Promoting the Health and Well-Being of People with Learning Disabilities [1st ed.] 9783030434878, 9783030434885

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Promoting the Health and Well-Being of People with Learning Disabilities Pauline Heslop Crispin Hebron Editors

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Promoting the Health and Well-Being of People with Learning Disabilities

Pauline Heslop  •  Crispin Hebron Editors

Promoting the Health and Well-Being of People with Learning Disabilities

Editors Pauline Heslop Norah Fry Centre for Disability Studies School for Policy Studies University of Bristol Bristol UK

Crispin Hebron Gloucestershire Health and Care NHS Foundation Trust Gloucester Gloucestershire UK

ISBN 978-3-030-43487-8    ISBN 978-3-030-43488-5 (eBook) https://doi.org/10.1007/978-3-030-43488-5 © Springer Nature Switzerland AG 2020 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

Foreword

In writing the foreword for this book, I reflected on how things were 40 years ago, when I was a second-year student nurse. Many people lived in large institutions where wards were large, impersonal and segregated by gender. The hospitals were self-sufficient, run by doctors and senior nurses and where residents had little power, choice or control. Apart from occasional day trips to the coast, most activities were organised collectively and carried out within the extensive grounds. People lacked independence or the ability to make their own decisions. If anyone was unwell or dying, ‘patients’ were cared for on site within sick wards. There was minimal contact with families or partnership work with professionals from outside ‘in the community’. Although too many people remain in specialist hospitals in 2020, there have been many improvements and advancements in the ways people with learning disabilities are included and treated within the world today. Due to individual needs being different, it is important that those people supporting them understand how support can best be delivered. This book Promoting the Health and Well-Being of People with Learning Disabilities helps in providing this valuable information. Having been written by partnerships of people with different expertise, the voice and experience of people with a learning disability and family members are integrated with that of different professionals working in this area. By sharing their collective knowledge, they provide an important resource from which to help others learn how to offer high-quality support. This book consists of ten topic-specific chapters, written by different authors. Chapter consistency is maintained in the use of narrative examples and self-­ reflection. This discursive format helps all readers to make links between different topics and apply the learning to their own situation. Being happy and healthy is a requisite for living a fulfilled life and a concept that we all strive to achieve. The first chapter outlines the building blocks we all require in this area and how they can best be enabled in people with learning disabilities. The two subsequent chapters address communication and decision-making, both essential aspects of supporting people to express themselves, interact with others and make decisions to enable them to optimise their independence. Chapter 4 focuses on behaviour. It helps the reader to understand what ‘challenging’ behaviour really means and how approaches to managing this can be used effectively. All people with learning disabilities have health needs, but some have additional health needs. All will require support, intervention v

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Foreword

and treatment from many different agencies. Individuals also need active support to look after and take responsibility for themselves. Chapter 5 helps the reader get to know what health services are available and explains the difference between health prevention, planned, and urgent care. Chapters 6 and 9 identify how to build the strengths, motivation, and purpose for everyone to learn to look after themselves and to make decisions in life in which to stay healthy. Chapter 7 considers the role that medication plays in people’s lives, how this effects people and how it should be managed safely. We care for people’s health, but it is important that we recognise and also care for people that are dying. Chapter 9 highlights how we can do this well and also consider the support needs of the bereaved. Chapter 10 identifies how and where to access the resources to help everyone learn to live happy, healthy lives. The principles of partnership, inclusion and independence are integral not only to this book, but also to the lives of people with learning disabilities within society. They are principles advocated by the MISFITs theatre company, who I have the privilege of working with regularly in delivering education to doctors, nurses, council, police, care provider agencies and others. The last words in this foreword sit with them. In meeting with them and asking them what they would want to say to staff reading this book, Clare said ‘I know all about Winterbourne View. I want staff to know how people like me can be kept safe’. Kathryn has recently come out of hospital. She said, ‘Staff in hospitals, as well as in my home, must know that my needs are different to those of other people and I want to be treated differently so my needs can be met’. Alistair said, ‘Staff need to take time to talk to and listen to me so that they can really get to know me’. Lesley Russ Independent Learning Disability, Nurse Consultant and trustee of the MISFITS Theatre Company Bristol, UK

Introduction

I am who I am. I was born to be me. So don’t say I can’t, cos I can. Just see me, not my disability.—(Beth Richards) ….we are the friends and family who Love, support, enable, champion Want equality for—build links for—find out, campaign and question for Enjoy, value, identify with, adapt to include Take pride in, marvel at, celebrate Teach skills, extend, reassure, motivate Listen to, learn from, care about, reflect on Hold knowledge of, hold records on Want to believe in a good future for Risk-assess, monitor quality, may whistle blow for The person who brought us together with you So we Appreciate you chose this work Warmly welcome your interest, energy, knowledge, insights, skills Expect communication, anticipation of what we need to know, explanation when you cannot say Count on you to support our own rights as carers, including us in decisions when you should Accept we may challenge each other Hope to share trust, confidence, respect Ask you to work with us as allies, partners …. Just as you would if the person who brought us together was your friend or family member—(Robina Mallett)

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Contents

1 Being Happy and Healthy ������������������������������������������������������������������������   1 Pauline Heslop, Crispin Hebron, Robina Mallett, and Sally Anne Hillman 2 Communication������������������������������������������������������������������������������������������  17 Sam Bradley, Hannah Crawford, and Hilary Nozedar 3 Decision-Making����������������������������������������������������������������������������������������  33 Sally Wilson and Liam Abraham 4 Behaviour����������������������������������������������������������������������������������������������������  47 Dave Williams and Michael Mulhall 5 Accessing Health Services ������������������������������������������������������������������������  57 Mo Gharraph, Jonathon Lenaerts, and Gwen Moulster 6 Providing Holistic Care ����������������������������������������������������������������������������  75 Daniel Marsden and Susan Cooper 7 Medication��������������������������������������������������������������������������������������������������  89 Danielle Adams and Barry Jubraj 8 Death and Dying���������������������������������������������������������������������������������������� 107 Irene Tuffrey-Wijne and Jean Willson 9 Staying Healthy������������������������������������������������������������������������������������������ 125 Jackie Fletcher, Jill Parker, Jordan Smith, and Dave Robinson 10 Some Things to Think About When Looking for Resources������������������ 139 Sue Turner, Anna Marriott, and Beth Richards Supporting Steven’s Health—A Poem by Suze Cooper �������������������������������� 149

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Contributors and Editors

About the Editors Pauline Heslop  comes from a nursing background, but now works as a researcher at the University of Bristol. She led the Confidential Inquiry into premature deaths of people with learning disabilities and established the English learning disabilities mortality review programme. Crispin Hebron  is a learning disability nurse who has worked in a range of different settings with a focus on improving health and well-being. Crispin has published articles and book chapters and has developed tools and resources for staff, families and people with learning disabilities.

About the Authors Sally Anne Hillman  is an independent woman with learning disabilities. Several years ago, she worked with Pauline as a co-researcher on a study about medication, and they have remained friends since then, sharing social activities and celebrations. Robina Mallett  is a powerful advocate for the involvement of families in policy and practice so that people with learning disabilities and their families lead inclusive and ordinary lives. Hilary Nozedar  is the mother of Alasdair, a young man who loves being around people and listening to their conversations. Alasdair loves listening to music and watching cookery and quiz programmes. He has physical, sensory and learning disabilities. Hilary has looked after Alasdair all his life and continues to do so, as part of his care team. Hilary is happy to share her and Alasdair’s stories in the hope that this helps others to learn, and with the aim of improving the lives of people with a learning disability.

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Sam  Bradley  is a Highly Specialist Speech and Language Therapist working with adults with learning disabilities in the community. She has expertise in working with individuals who have eating and drinking or communication difficulties. Sam uses a range of innovative interventions to support people with learning disabilities with their communication and encourage the safety and enjoyment of mealtimes. She has published research on Intensive Interaction and is a regular guest lecturer at Leeds Beckett University, having also lectured at Teesside and Leeds Universities. Hannah Crawford  is a Consultant Speech and Language Therapist working with adults with learning disabilities in community and inpatient settings. She also has experience working with adults with mental health difficulties. She is a professional advisor for the Royal College of Speech and Language Therapists. She has research interests in understanding and working compassionately with family carers of adults with profound and multiple disabilities. Liam Abraham  has been a powerful advocate for people with learning disabilities for over 10 years and is described as giving 100% to making things better for people with learning disabilities. He was a member of ‘New Ideas’, an advocacy group for people with learning disabilities, and this led to Liam’s involvement in a number of regional forums and steering groups, including being co-chair of the North Warwickshire health sub-group for people with learning disabilities, where he was instrumental in shaping policy and process for improving access to health services. Liam has been a member of a Learning Disability Partnership Board and worked as a Peer Reviewer for a local County Council, visiting supported living environments and making sure that the people living in these placements were getting the right support. He was also a member of ‘Health Act’, a group which performs short sketches about meeting health outcomes. Liam is a keen cyclist and a member of a local gym and Slimming World. He had a hip replacement aged 49 but continues to maintain his exercise routine. Sally Wilson  has worked as a registered learning disability nurse for over 20 years, in a variety of inpatient, assessment and treatment and community settings, and with all age groups from children to older adults. She is currently working in an acute hospital as Matron for Vulnerable Patients and Safeguarding Adults Lead. Prior to taking this post, she worked in an acute liaison role for 5 years in a district general hospital; it was during this time, she became aware of the needs of other vulnerable patient groups, specifically frail elderly patients. Over 20 years after first working with people with learning disabilities, Sally is still passionate about all things to do with their care. She is a founder member of Team @WeLDNurses, which runs a fortnightly twitter chat for specialist learning disability professionals and anyone else who is interested in the support of people with learning disabilities. Through this work, undertaken as a volunteer, Sally remains committed to improving networking opportunities and the use of social media for people providing support to people with learning disabilities.

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Sally is currently studying for her Master’s in Advanced Nursing Studies and will be focusing her dissertation on the use of the Mental Capacity Act in acute services. Michael Mulhall  lives in his own home with his own tenancy, sharing with two others and receiving 24-h support from experienced staff. He enjoys gardening, word searches and jigsaws, swimming, shopping, holidays, looking after tropical fish, and following his favourite football team, Blackburn Rovers. He goes to a social group one evening a week and enjoys visiting his sister, niece and nephew. Michael is in a relationship. He also enjoys volunteering at a tourist attraction nearby and voluntary work in a local charity shop 2 days a week. Prior to this move Michael was at an assessment and treatment unit for 12 years, where staff used medication and physical restraint as part of his support plan; now that he is living in his own home with support Michael is much happier! Dave Williams  has worked in Learning Disability services for over 23 years and qualified as a Learning Disability nurse in 2001; over this time, Dave has worked in a range of roles and settings including Community Teams for people with Learning Disabilities, managing provider services and leading on development and implementation of Positive Behaviour Support within an integrated Learning Disability Service, which included the development of policy, training and working with providers on implementation. Mo Gharraph  lives with his mum (Mama Nevine). His dad (Baba) works abroad and visits twice a year. Mo loves spending time with his girlfriend Sophie. He is a proficient Makaton signer and likes anything to do with the theatre, singing, dancing, acting and going to shows, especially sing-along musicals. Mo enjoys sports; he has been described as a ‘demon’ table tennis player. Although he does not like heights, Mo loves scary rides like rollercoasters, anything fast! Mo does voluntary work in a charity shop a couple of hours a week. Jonathon Lenaerts  lives with two other young men in a supported living house. He loves music and theatre, plays the drums and guitar and likes to sing and dance. He enjoys cooking and watching TV. Jonathon was the first person who has a learning disability to be on the Student Union committee at college. He now attends Speaking Space, a total communication day service for people with learning disabilities and/or autism (see http://www.speakingspace.co.uk/), where he has a job as a Communication Assistant, helping staff to facilitate effective communication. He helped make Romsey the first Makaton friendly town in the country. Jonathon is deputy editor of Speaking Space Newsletter. He would like to get a full-time job and has always wanted to join the police force. Gwen  Moulster  lives with her husband Steve and her dog Penny. She has one grown up son and three grandsons. Gwen is a learning disability nurse with many years of experience.

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Daniel  Marsden  met his co-author Susan (Suze) Cooper initially in the early 2000s when Daniel was a Community Nurse in Learning Disabilities and ran a clinic for people with profound and multiple disabilities in Kent. They were reintroduced via a social media conversation regarding a clinical issue involving Suze’s brother—Steven—in 2018. Steven has Wolf Hirschhorn Syndrome (WHS)—a deletion of the short arm of the fourth chromosome (4p-) and was only the third person in the world to be diagnosed. His parents were told to take him home and love and care for him one day at a time as there was no information available and no expectations, time limits or others to measure against. His parents gathered what information they could and ensured other families receiving the same diagnosis would benefit from their experience by creating a UK-wide support group which, 40 years on, stands at more than 400 members. Steven has profound and multiple disabilities and lives in an independent living arrangement with 24-h support. He is a football and snooker fanatic; he is uncle to two nephews and a niece and has a ‘wicked’ sense of humour. Susan Cooper  is an expert in her brother’s health and care. She has a voluminous understanding of her brother’s communication and behaviour, and vast experience of the systems of support and legal frameworks that can enable her to advocate with and for him, with the aim he lives a healthy, safe and fulfilled life. Danielle  Adams  is a specialist mental health pharmacist with over 25 years of experience in clinical practice within a range of healthcare settings. She has a special interest in supporting healthcare teams and people with learning disabilities to get the best out of using medicines. She is the author and co-author of several publications about using medicines with people with learning disabilities and is currently a PhD student at the Centre for Educational Development, Appraisal and Research Centre (CEDAR), University of Warwick. She is mum to a young man in his 20s with learning disability. Barry Jubraj  is dad to Alexander who was born in 2016 and has Down’s Syndrome, a severe learning disability and complex medical needs. Also trained as a pharmacist and teacher, Barry has made it his mission to translate his own experience with Alexander’s medicines into writing articles, teaching healthcare practitioners, and speaking at meetings. His aim is to share the family’s lived experience in ways that equip health and social care professionals to manage medicines better. Barry is regularly invited to contribute his personal and professional experience and with Danielle Adams co-wrote the foreword of a national training package for pharmacy staff about learning disability. Irene Tuffrey-Wijne  is Professor of Intellectual Disability and Palliative Care at Kingston University and St George’s University of London. She qualified as a nurse in Amsterdam (the Netherlands) before moving to London in 1997. She has extensive clinical experience in both intellectual disability and palliative care services.

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Since 2001, Irene has led a programme of research on intellectual disability, cancer and palliative care. Listening to the voices and experiences of people with intellectual disabilities and carers have been important aspects of her research. She has published widely and presented her work in the UK and across the world and has been instrumental in setting international standards in the area of palliative care for people with intellectual disabilities. Irene is chair of the Palliative Care of People with Learning Disabilities Network and of the Reference Group for Intellectual Disabilities of the European Association of Palliative Care. Jean Willson  is a retired social worker. She led large organisations working for people with learning disabilities and their family carers in the voluntary sector, and later as consultant, assessor and trainer. During this time, she became a committed activist, campaigning to improve the quality of lives for children and adults with learning disabilities and their family carers; working locally and nationally, sitting on Government groups. In 1991, Jean and another mother set up the first supported housing in England for people with profound and multiple disabilities, for their daughters, and co-authored the book about this called ‘Home at last’. Jean was awarded and OBE in 2011 for services to people with learning disabilities and their family carers. In 2013, she was made Honorary Freeperson of the London Borough of Islington in recognition of her major and unique contribution made to the life of the borough. She has dedicated her life to improving the lives of adults and children with learning disabilities. In recent years, since the death of her daughter Victoria, this has focused on ensuring all people with learning disabilities get good end of life care. Jackie Fletcher  is an Executive Director of Quality, Public Affairs and Policy for Dimensions, a national provider to people with learning disability and/or autism. Her background is in direct delivery of support in the not-for-profit sector. Jill  Parker  is a consultant in social care, specialising in quality, policy, co-­ production and engagement. She has a background in the delivery of support services to people with learning disabilities primarily in the not-for-profit sector. Jordan Smith  is a campaigner for health equalities for people with learning disabilities and autism.  Jordan has experienced first-hand health inequalities and now speaks out nationally for change. Jordan works for Dimensions as Health Equalities Lead. In addition to this role, he is the Chair, Dimensions Council (representative body), an NHS Learning Disability and Autism Advisor and a representative for Learning Disability England. Dave Robinson  is Health and Wellbeing lead for Dimensions. Dave has worked with supporting people with learning disabilities for over 30 years and currently works alongside Jordan in understanding and addressing health inequalities experienced by people with learning disabilities and autism.

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Sue Turner  trained as a nurse for people with learning disabilities. She has worked within training, as a Nurse Advisor in Gloucestershire, and has managed a variety of services for people with learning disabilities in Gloucestershire and Bristol including community learning disability teams. Sue was the Valuing People Lead for the South West Region for four and a half years, initially job sharing the role with Carol Robinson. Sue previously led the Improving Health and Lives (IHaL) project for the National Development Team for Inclusion for 3 years and was the Learning Disability Lead for the NDTi. She wrote many of the earlier reasonable adjustment guides for IHaL (now Public Health England) as well as health-related guidance for practitioners and commissioners. Anna Marriott  has considerable experience of working directly with adults with learning disabilities and a particular interest in issues around health inequalities. In her role in Public Health England (on the IHaL project), she promoted better health outcomes for people with learning disabilities by sharing evidence-based best practice. She shared learning with a wide audience including commissioners, providers, people with learning disabilities and family carers. This was through training events, conferences, webinars and written guidance. She produced a series of reasonable adjustment guidance reports and created resources for social care staff to help them in supporting the health needs of the people with learning disabilities they work with. Prior to this she worked on the Confidential Inquiry into premature deaths of people with learning disabilities and is now a member of the steering group for the Learning Disabilities Mortality Review (LeDeR) Programme, with a specific role co-ordinating the self-advocate advisory group. Beth Richards  is a young person with a learning disability. She is an actor and a poet. As a member of The Misfits (a theatre company for people with learning disabilities), she has a lot of experience in using drama to train medical professionals. She has taught about the barriers people face and about how best to communicate with people with learning disabilities. She works at the University of Bristol doing research to find out why more people with learning disabilities are not on television. Beth uses her poetry and performance to help change attitudes. Beth studied at the University of the West of England to become a health trainer and worked in this role for 4 years. She worked on a one-to-one basis with people with learning disabilities to help them look after their health. During this time, she also gave advice to the CIPOLD programme.

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Being Happy and Healthy Pauline Heslop, Crispin Hebron, Robina Mallett, and Sally Anne Hillman

1.1

Overview

We start this chapter by exploring the concepts of health and happiness and considering the key influences and essential building blocks of health and happiness. We consider how these might impact on people with learning disabilities, and strategies to support the happiness and health of people with learning disabilities. The two key factors—knowing the person well and providing the right support at the right time— are explored through narrative examples. The chapter finally offers a framework to guide our thinking when supporting people with their health and happiness, drawing on the influences, building blocks, strategies and factors explored throughout the chapter.

1.2

Initial Reflections

This chapter is about being happy and healthy. It is something that we probably all want for ourselves, and those we care most about. But beliefs about what makes us happy and healthy vary considerably across people and between cultures. What makes one person feel happy may not be the case for another. What makes one person feel unhealthy may not be the case for another person. To start this chapter, we want you to reflect on what makes you feel happy and healthy. As authors, in a short period of joint reflection, we came up with 56 things that can make us feel happy and healthy. Some of these included: following our own preferences, having the opportunity to learn new things, feeling included in

P. Heslop (*) · C. Hebron · R. Mallett · S. A. Hillman Norah Fry Centre for Disability Studies, School for Policy Studies, University of Bristol, Bristol, UK e-mail: [email protected] © Springer Nature Switzerland AG 2020 P. Heslop, C. Hebron (eds.), Promoting the Health and Well-Being of People with Learning Disabilities, https://doi.org/10.1007/978-3-030-43488-5_1

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activities, having a sense of belonging to a group, not being in pain or discomfort, not worrying too much, and having a break from routine. Exercise 1.1 Self-Reflection

Reflect on the following three questions. Write your ideas down. We will come back to your list later in this chapter. 1 . What do you need in your life to feel happy? 2. What do you need to feel healthy? 3. What do you need from others to feel happy and healthy? When thinking about what you need to feel happy and healthy you may have been thinking about: (a) Material items, such as having enough money to go on holiday, or taking vitamin tablets every day. (b) Some of the wider external or environmental influences on our happiness and health, such as having a wide social network, or living in a safe and pleasant environment. (c) Personal characteristics related to feeling happy and healthy, such as feeling as though your views matter or not getting too tired. Looking again at your list, you will probably notice that the material items could change—for example, if you inherited a large amount of money, affording a holiday may no longer be an issue. Some of the wider external or environmental influences on our happiness and health tend to be more stable, but may also change; for example, changes to our working environment or to our housing situation may affect our happiness and health. The personal characteristics are associated with both material items and the wider external or environmental influences on our happiness and health. It is the interrelationship between these that we will focus on in this chapter, particularly in relation to supporting people with learning disabilities.

1.3

Key Concepts

1.3.1 Happiness The Oxford dictionary definition of happiness is ‘the state of feeling or showing pleasure’ or ‘the state of being satisfied that something is good or right’. The concept of happiness is often described in relation to one’s satisfaction with life, or sense of well-being. Thus, there are two aspects of happiness: happiness being a state of mind, and happiness being a value judgement by the individual about their life going well.

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In a cross-cultural study exploring adults’ understanding of happiness across countries, Delle Fave et al. (2016) identified the most common components of happiness to be inner harmony together with a balanced and positive connectedness with others. Socrates, the Greek philosopher, considered happiness to be attained by living a life that’s right for the soul—something we will come back to.

1.3.2 Health The World Health Organisation defines health as a ‘state of complete physical, mental and social well-being and not merely the absence of disease or infirmity’ (World Health Organisation 1946). In the 1980s, the definition was refined to clarify that health can be a dynamic, not a fixed, state. In other words, we may be less healthy at some times in our lives (e.g. if we have an accident and injure ourselves) but could then recover our good health. Health was additionally defined as ‘the extent to which an individual or group is able to realize aspirations and satisfy needs and to change or cope with the environment’ (World Health Organisation 1984). So a person may have one or more chronic conditions (such as diabetes or epilepsy) that they live with, but they could be healthy if they can adapt to their condition without it getting in the way of them living their life as they wish to. Evidence suggests that people with learning disabilities are more likely to have one or more long-term chronic conditions than people without learning disabilities (Tyrer et al. 2019). That does not necessarily mean that people with learning disabilities will be less healthy. With the right support at the right time, people with long-term chronic conditions can remain healthy. Although happiness and health are different concepts, we are considering them together in this chapter because they share elements related to wellness and physical and mental well-being. This can help us to move away from a model of health that is based on symptoms of illness, and towards a more dynamic understanding of happiness and health that pays attention to the variety of influences that may be relevant, and our own role in being able to affect the health and well-being of those we support.

1.4

Influences on Our Happiness and Health

A helpful starting point for thinking about the range of influences on our health and happiness is the Dahlgren–Whitehead ‘rainbow model’. This is illustrated in Fig. 1.1 below. Göran Dahlgren and Margaret Whitehead developed the Dahlgren–Whitehead ‘rainbow model’ in Dahlgren and Whitehead 1991. The model sets out the relationship between an individual and the social and environmental factors that determine their health. The model has been widely used to help explain the root causes of inequalities in health. At the centre of the model is the individual and our own personal characteristics. These could be considered the ‘cards we are dealt with in life’—our age and gender

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Living and working conditions Work environment

Unemployment

Water and sanitation

Education

Agriculture and food production

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Age, Sex and hereditary factors

Health care services

Housing

Dahigren, G.(1995) European Health Policy Conference: opportunities for the Future.Vol 11 - Intersectoral Action for Health. Copenhagen: WHO Regional Office for Europe

Fig. 1.1  The Dahlgren–Whitehead ‘rainbow model’

and the genes or health conditions we have inherited from our family; they are usually fixed characteristics of ours. Surrounding the centre is several layers of influence that can affect how healthy we are. These are potentially modifiable and depend on our own actions, our individual resilience, the support or resources we have available to us, and the wider social, political and economic circumstances in which we live. The first of the layers of influence relates to individual lifestyle factors, such as the type of food we eat, how much exercise we get or whether we smoke or not. Such individual lifestyle factors are commonly understood to impact on how healthy we are, or our likelihood of developing long-term health conditions in the future. The second layer of influence relates to the social and community networks we have in our lives. Social contact is an important influence on health and happiness and there is growing evidence that identifies loneliness as a major determinant of poor health and even premature death (Holt-Lunstad et al. 2015; Valtorta et al. 2016). The outer layers relate to the more general socio-economic, cultural and environmental conditions of our lives which contribute a substantial part of the difference in health outcomes between people. Where we live can determine how much air pollution we are exposed to, how easy it is to get out into green spaces, the quality of our housing, and how likely we are to feel safe when out and about—all of which are factors related to our health. Having a very low income can influence our mental and physical health adversely, as can unemployment. People unable to access good healthcare services are more likely to have poor health than those with easy access to high-quality services. We can use this model as a starting point to look at two key things when considering supporting people with learning disabilities:

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• Some of the positive factors within each of the layers of influence that contribute to the maintenance of happiness and health. • How some of these positive factors may be different for people with learning disabilities resulting in unfair or avoidable differences compared with people without learning disabilities. When we look at these layers of influence, we can see that they impact on the factors we identified at the start of the chapter, creating an individual and dynamic experience for each of us, including people with learning disabilities. Let’s take the individual lifestyle example of diet and how the different layers of influence can affect this. For example, if I have little money, I may be unable to afford nutritious high-quality food; if I have no transport I may be dependent on a local shop that does not stock a good range of fresh products, including fruit and vegetables; if I do not receive appropriate education about the importance of a balanced diet I may eat the ‘wrong’ foods as a matter of course; and if I am dependent on others to select and make food for me, my diet may not be of my own choice. Now, look at the list of ideas you came up with in response to Exercise 1.1. Think about what you need to feel happy and healthy and how items on your list are affected by the layers of influence in Dahlgren and Whitehead’s model.

1.5

Building Blocks for Feeling Happy and Healthy

We have already mentioned that beliefs about what makes us happy and healthy can vary considerably across people and between cultures. However, we have identified several key characteristics related to feeling happy and healthy that apply to all of us. We have illustrated these in Fig. 1.2. They are: • • • •

Having choice and control Feeling valued Feeling safe and secure now and in relation to the future Having self-confidence and a feeling of self-worth.

These are the building blocks that people who feel happy and healthy tend to have, rather than must always have. So, for example, a person may have little choice about attending a particular event but may still feel generally happy and healthy. Being person-centred in the support we give can help these building blocks to become established and sustained and can increase the resilience of an individual in relation to their health and happiness.

Having choice and control

Feeling valued

Feeling safe and secure, now and in relation to the future

Fig. 1.2  Building blocks for feeling happy and healthy

Having selfconfidence and a feeling of self-worth

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1.5.1 Having Choice and Control The first building block is of having choice and control. Being able to exercise some choice and control in our daily life is important for most people, but our views about this may be influenced by interrelated environmental, interpersonal, and personal contexts. As a parent, for example, I may be happy to follow the choices of others in terms of what we do at a weekend, but at work I may perform better when I have choice and control over how I undertake required tasks. The Social Care Institute for Excellence (SCIE) suggests that having choice and control is one of the main factors that promotes dignity in care which contributes to a person’s sense of self-worth. It should be present in all care (For more information see: https://www.scie.org.uk/publications/guides/guide15/factors/choice/). But having choice and control goes beyond this too and it is considered to be fundamental to achieving citizenship, social inclusion and human rights.

1.5.2 Feeling Valued The second building block is feeling valued. Feeling valued is similar to feeling important and appreciated, or as though you matter. It is a key component of us feeling as though we have a place in the world. Think about how you feel when you feel valued at work. You are likely to feel motivated to do your best, positive about your work and unlikely to be dissatisfied and want to look for another job. When we feel valued, our sense of self-worth and self-esteem increases.

1.5.3 Feeling Safe and Secure The third building block is feeling safe and secure, now and in relation to the future. Psychologists suggest that feeling safe and secure is based on believing that the people closest to us care sufficiently about us to take care of us, and that we are worthy of their attention and love. A lack of a sense of safety and security can manifest itself as stress or anxiety in some people. Developing a feeling that the world is a predictable place where our needs will be met can be helpful in such circumstances.

1.5.4 Having Self-Confidence and a Sense of Self-Worth The final building block that we are considering here is having self-confidence and a sense of self-worth. Bénabou and Tirole (2002) define self-confidence as simply believing in oneself. It is about believing that we can successfully face day-to-day challenges and demands. For us to feel self-confident we need to have something to base this on, such as our past experiences of successfully negotiating challenges or

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having positive relationships with others. This then provides the basis for believing in ourselves in the present and the future.

1.6

The Effect of a Person’s Learning Disabilities

Thinking of these building blocks provides us with a basis for developing personalised support that enables a person ‘to live a life that is right for their soul’. This is especially important for people with learning disabilities who often encounter prejudice and discrimination at some time in their lives and may have fractured and inconsistent support and a tenuous sense of belonging. In general, people with learning disabilities face significant inequalities across multiple domains of life. In relation to health, the Confidential Inquiry into the Premature Deaths of People with Learning Disabilities (Heslop et  al. 2013) reported that people with learning disabilities die much earlier than people in the general population and that many of these deaths are preventable. The report from the Equality and Human Rights Commission (2018) ‘Is Britain fairer?’ concluded that people with learning disabilities continue to experience significant barriers to accessing healthcare services and that they have worse physical and mental health outcomes than the rest of the population. This is not due to people having learning disabilities per se. It is often due to the discrimination and prejudice, sometimes unconscious, that people with learning disabilities experience. This results in inequity between people with learning disabilities and the rest of the population. There is a moral dimension to this. Inequity is a different concept to inequality, although the terms are sometimes used interchangeably. Inequality refers to differences about which there may be little that could be done; for example, we know that older people are more likely to develop symptoms of dementia than younger people and that this is related to age. The term inequity, however, introduces a moral dimension because it relates to an unjust difference. It is unjust that people with learning disabilities have poorer access to healthcare than their peers, and this is a health inequity.

1.7

 trategies to Support the Happiness and Health S of People with Learning Disabilities

When supporting people with learning disabilities we need to try to: • Maximise the positive factors within each of the layers of influence that contribute to the maintenance of happiness and health. • Minimise any avoidable differences compared with people without learning disabilities. • Ensure the building blocks are in place for people to feel happy and healthy.

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1.7.1 M  aximising the Positive Factors Within Each of the Layers of Influence that Contribute to the Maintenance of Happiness and Health As supporters of people with learning disabilities, we need to maximise and find the right individual balance of the positive factors within each of the layers of influence that contribute to the maintenance of happiness and health for each individual. The right balance will be different for each person and may vary overtime—for example, playing football twice a week may be great for one person but not for another; the routine may need to be changed if the person is unwell or if the weather is unsuitable, and this of course would need to be balanced against appropriate rest opportunities for time alone. Another example is in supporting social and community networks which can influence the building blocks for feeling happy and healthy shown in Fig. 1.2. It is easy to see how a ‘virtuous circle’ can be created: having friends and being part of social networks helps us to feel valued, to exercise choice and control, to feel safe and secure, and to have a sense of self-worth. Such attributes are likely to lead to increased social contact and wider social networks.

1.7.2 M  inimising Any Avoidable Differences Compared with People Without Learning Disabilities As well as maximising the positive factors within each of the layers of influence that contribute to the maintenance of happiness and health, we need to minimise any avoidable differences compared with people without learning disabilities. One example is in relation to accessing healthcare. Having access to good-quality healthcare when we need it is essential to achieving and maintaining health and happiness. However, there is a growing body of evidence that suggests that people with learning disabilities experience difficulties in accessing healthcare on a par with the general population, and that the reasonable adjustments that they may need are not always provided (Michael 2008; Tuffrey-Wijne et al. 2014). As supporters of people with learning disabilities, we need to work hard at minimising this inequality by advocating for people with learning disabilities when needed so that they are not disadvantaged when accessing health services. In the example above we saw how a ‘virtuous circle’ could be created when the activity contributes to the essential building blocks of health and happiness. Of course, the reverse is also true. If we are unable to access healthcare when needed or we have a poor experience of healthcare, then we are likely to have less confidence and to feel less safe—and such feelings can lead to further difficulties with accessing health services. A ‘negative cycle’ may then be established resulting in a diminished chance of receiving good healthcare resulting in poorer health. Our aim in supporting people with learning disabilities should be to develop and enhance ‘virtuous cycles’ and reduce any negative ones.

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 nsuring the Building Blocks Are in Place for People E to Feel Happy and Healthy

Establishing and maintaining the building blocks for health and happiness is crucial (Fig.  1.2). Without these being in place people are likely to feel vulnerable, less healthy and less happy. Supporting people to have more choice and control, a sense of security and to feel valued and self-confident are therefore core elements of the support worker role. This is more than a theoretical principle we should follow. Working in this way should become the compass which directs our approach to supporting people to have the healthiest and happiest life possible whilst living a life that is fundamentally right for them. There are two key factors that will help us to establish and maintain the building blocks for health and happiness. The first is the importance of knowing the person well. Sal and Robina explain this in relation to their own lives below. Visiting My GP

‘I would really like to see the same GP every time I go but this doesn’t happen anymore. I find it hard to remember everything I want to say when I am there, I get nervous and I feel rushed. I will sometimes say what I think the doctor wants to hear because I don’t want to make a fuss so I usually prefer to have someone with me. If the person supporting me does not know me well they may not recognise what is happening – having someone with me who knows me well and understands me means they can help me to say what I mean, they can recognise when I am finding it difficult, they will know about things that have happened to me before. I feel much safer and more confident if I am supported by someone who knows me well’.

Interviewing New Staff

Choosing Staff ‘I like to go out for coffee with anyone applying to work with me. My senior support worker organises this – she selects the ones who fit what is needed (short list) as she knows me well. I then go for coffee with each of them separately and then I choose who I want to work with me – I get the final say’.

Different Needs

‘My two daughters’ needs are different, so I adjust the support I provide accordingly. I often need to support one with her balance and staying safe, especially in crowds, but if I helped my other daughter in the same way she would see that as patronising and over-protective. Whilst one daughter needs help to reduce her anxiety, and I can see by her face and body language when this is needed, her sister does this for herself very well and I would be de-­skilling her if I stepped in at such times’.

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Knowing someone well requires spending time, recording important information and sharing that information appropriately including responding to body language, recognising patterns of behaviour and triggers for anxiety and advocating appropriately. It is only by really getting to know someone well that we can begin to understand the different layers of influence in their life and how these influences are experienced by them. The second key factor that will help us to establish and maintain the building blocks for health and happiness is the importance of ensuring the right support at the right time. Again, Sal and Robina explain this below. Going on Holiday

‘I like to be supported on holiday by people who have got the same interests as me so we can do things together. I want someone who will ‘go with the flow’. They must be calm and relaxed, even though things are different. I want them to be organised and plan things, but still be fun. I need someone who makes me feel safe and who doesn’t panic’.

Going Out with Friends for Dinner

‘I like to go out for dinner with friends; I need some support, but I do not want support staff too close to me. I nearly lost a really good friend when two staff stayed with me all evening, in the same place. I didn’t feel I could tell them to go away, but I felt crowded out and very embarrassed’.

Self-Help Strategies

‘My daughters like to feel as independent as they can, and as their Mum this is what I want to encourage. If things don’t work out as they hoped (for example feeling they were ignored or not given enough time to make a decision) we work out together how they could try to make things different next time. If someone, say a doctor, looks at me instead of speaking to one of my daughters, I look at my daughter rather than the person who is speaking to me; they know I will do that and enjoy our plan – usually the other person soon starts directing their attention away from me. They know they can say “I need to think about that….’ to let other people know they need more time and that it’s better to say ‘I don’t know what you mean’ if they are getting confused. Little things like this help them feel more in control, able to cope and less anxious. They also mean that other people learn how best to help them in the future’. The right support at the right time takes both planning and knowing the person really well in order to be able to provide additional support at known times of stress; this might be planning a holiday that’s right for the individual, or knowing when to

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provide support and knowing when to stand back. Having support in place for the unexpected is really important and can include end of life planning and crisis planning. Knowing the person well and ensuring the right support at the right time will enable us to plan and deliver good person-centred, flexible support that will enhance both health and happiness. It should be key to all our interactions with the people we support. There is a range of tools and approaches available to help with this such as Essential Lifestyle Planning (Smull and Sanderson 2005) which helps to identify what is important to someone and what support they need to achieve it. The Health Equalities Framework (HEF) (Atkinson et al. 2015) is a tool that helps to identify areas of a person’s life that are causing them to experience health inequalities and helps to identify ways to reduce these influences.

Exercise 1.2 Supporting People with Learning Disabilities

Look at the list that you made in Exercise 1.1. We asked you to reflect on what you need in your life to feel happy, what you need to feel healthy, and what you need from others to feel happy and healthy. Now think about the support you provide to a person with learning disabilities. Write down some ideas about how you could best support them by: • Maximising the positive factors within each of the layers of influence that contribute to the maintenance of happiness and health: • lifestyle choices; social and community networks; living and working conditions; general cultural and environmental conditions. • Minimising any avoidable differences compared with people without learning disabilities: discrimination; negative assumptions; stigma; isolation; inequity. • Ensuring the building blocks are in place for people to feel happy and healthy: choice and control; feeling valued; feeling safe; self-confidence and self-worth.

1.9

 Framework Approach to Reflecting on How We Can A Support the Happiness and Health of People with Learning Disabilities

You can put this thinking about how we provide support to people with learning disabilities into a framework, similar to Dahlgren and Whitehead’s model above. You can use such a framework to think about a person and their life as a whole, or to think about a specific aspect of a person’s life. Figure 1.3 shows this framework as a model.

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Individual

Lifestyle factors

Social and community networks

Wider determinants

Maximise positive factors

Reduce avoidable differences

Having choice and control

Feeling valued

Feeling safe and secure, now and in relation to the future

Having selfconfidence and a feeling of self-worth

Fig. 1.3  Supporting the happiness and health of a person planning to move home

On the next page in Fig. 1.4 we have used a framework with Sal to help us plan her move to a new home. Our starting point in using the framework was the determinants of happiness and health that might be related to Sal moving home. We considered with Sal how we could maximise the positive factors within each of the layers of influence that contributed to the maintenance of happiness and health, and how we could minimise any differences between Sal and other people without learning disabilities. Finally, within our model, we used the building blocks of health and happiness to check that Sal would have choice and control, a sense of security and feel valued and self-confident. You could look at your thoughts from Exercise 1.2 and see if you could use the framework to guide your thinking about the support you are providing to someone with learning disabilities. You will see how important it is that you know the person well and that you focus on ensuring the right support at the right time.

1.10 Summary and Conclusions In this chapter we have thought about what we need in life for us to feel happy and healthy. We have identified some of the layers of influence that may be relevant, including individual lifestyle factors, social and community networks, living and working conditions, and more general social conditions. We have also identified the building blocks to feeling happy and healthy as having choice and control, feeling valued, feeling safe and secure, and having self-confidence and a sense of self-worth. In our work supporting people with learning our intention should be to maximise the positive factors within each of the layers of influence that contribute to the

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Determinants of health Individual

Lifestyle

Networks

Wider

Maximise positive factors

Help Sal keep active and fit. Support Sal’s independence. Maintain local roots. Maintain links with family. Keep up Sal’s regular physio. Help Sal manage her own health and medication with new GP.

Enable Sal to keep and look after her cat. Ensure there is a garden to use. Ensure shops and cafés are available locally. Check there is easy access to swimming and trampolining and larger supermarkets.

Find a home near existing networks of friends/family. Support Sal to keep up her Country and Western dance club. Support Sal to feel part of a community with activities and opportunities.

Respect Sal’s own beliefs. Support Sal to remain interested in local issues and have her say. Help find opportunities for voluntary and paid work for Sal. Register Sal to vote.

Reduce avoidable differences

Ensure easy access home that’s fit for the future. Ensure spare room is available for paid staff. Ensure adaptations are made to kitchen and bathroom.

Find a home that is not on a busy road, is in a welllit area, has level access so Sal can use her walker, has a bus stop nearby, and has disabled parking / parking for support staff outside the house.

Building blocks of health and happiness

Feeling valued

Make sure that Sal doesn’t lose contact with friends by moving to a new house. Ensure Sal has access to local information & community opportunities in the new area.

Champion accessible and flexible housing and employment options. Ensure benefits / rights optimisation. Keep alert to any reasonable adjustments needed for Sal to access new area.

Having choice and control Feeling safe and secure, now and in relation to the future Having self-confidence and a feeling of self-worth

Fig. 1.4  Thinking about maximising Sal’s health and happiness when she moves home

maintenance of happiness and health, minimise any avoidable differences compared with people without learning disabilities, and ensure that the building blocks are in place for people to feel happy and healthy. Such an approach requires us to really know and understand the person we are supporting, and to ensure that they receive the right support at the right time.

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Reflective Space

Before moving on to the next chapter, think about what you have learnt in this chapter and how it relates to your work supporting people with learning disabilities. In Exercise 1.1 you thought about what you need from others to feel happy and healthy. It is likely that people with learning disabilities will need the same or similar things from you as their supporter. How do you provide this? In Exercise 1.2 you considered how you could best support people with learning disabilities to establish and embed the building blocks that need to be in place for us to feel happy and healthy. What will you do now to apply this learning? What actions do you need to take so that the people with learning disabilities that you support can also live a life that is right for their soul?

Sources of Additional Information Atkinson D, Boulter P, Hebron C, Moulster G. HEF+ Health Equalities Framework v2.0 © 2015 https://www.ndti.org.uk/uploads/files/HEF%2B_manual_plus_final.pdf The Kings Fund. Broader determinants of health—future trends. https://www. kingsfund.org.uk/projects/time-think-differently/trends-broader-determinants-health

References Atkinson D, Boulter P, Hebron C, Moulster G. HEF+ Health Equalities Framework v2.0 © 2015 https://www.ndti.org.uk/uploads/files/HEF%2B_manual_plus_final.pdf accessed 01.05.2020. Bénabou R, Tirole J. Self-confidence and personal motivation. Q J Econ. 2002;117:871–915. Dahlgren G, Whitehead M. Policies and strategies to promote social equity in health. Stockholm: Institute for Futures Studies; 1991. Delle Fave A, Brda I, Wissing MP, Araujo U, Castro Solano A, Freire T, et al. Lay definitions of happiness across nations: the primacy of inner harmony and relational connectedness. Front Psychol. 2016;7:30. https://doi.org/10.3389/fpsyg.2016.00030. Equality and Human Rights Commission. Is Britain fairer? The state of equality and human rights. 2018. https://www.equalityhumanrights.com/sites/default/files/is-britain-fairer-2018-pre-lay. pdf. Accessed 14 Dec 2019. Heslop P, Blair P, Fleming P, Hoghton M, Marriott A, Russ L. The confidential inquiry into premature deaths of people with learning disabilities. Final report. University of Bristol. 2013. http://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf. Accessed 14 Dec 2019. Holt-Lunstad J, Smith TB, Baker M, Harris T, Stephenson D. Loneliness and social isolation as risk factors for mortality: a meta-analytic review. Perspect Psychol Sci. 2015;10(2):227–37. Michael J. Healthcare for all: report of the independent inquiry into access to healthcare for people with learning disabilities. 2008. https://webarchivenationalarchivesgovuk/20130105064250/http:// wwwdhgovuk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/ DH_099255. Accessed 14 Dec 2019.

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Smull MW, Sanderson H.  Essential lifestyle planning for everyone. Stockport: The Learning Community; 2005. Tuffrey-Wijne I, Goulding L, Giatras N, Abraham E, Gillard S, White S, et al. The barriers to and enablers of providing reasonably adjusted health services to people with intellectual disabilities in acute hospitals: evidence from a mixed-methods study. BMJ Open. 2014;4:1–11. Tyrer F, Dunkley AJ, Singh J, Kristunas C, Khunti K, Bhaumik S, et al. Multimorbidity and lifestyle factors among adults with intellectual disabilities: a cross-sectional analysis of a UK cohort. J Intellect Disabil Res. 2019;63(3):255–65. Valtorta NK, Kanaan M, Gilbody S, Ronzi S, Hanratty B. Loneliness and social isolation as risk factors for coronary heart disease and stroke: systematic review and meta-analysis of longitudinal observational studies. BMJ Heart. 2016;102:1009–16. World Health Organisation. Preamble to the Constitution of WHO as adopted by the International Health Conference, New York, 19 June–22 July 1946; signed on 22 July 1946 by the representatives of 61 States (Official Records of WHO, no. 2, p. 100) and entered into force on 7 April 1948. 1946. https://www.who.int/governance/eb/who_constitution_en.pdf. Accessed 14 Dec 2019. World Health Organization Regional Office for Europe. 1984. Health promotion: a discussion document on the concept and principles: summary report of the Working Group on Concept and Principles of Health Promotion, Copenhagen, 9–13 July 1984 (ICP/HSR 602(m01)5 p). Copenhagen: WHO Regional Office for Europe. https://apps.who.int/iris/handle/10665/107835. Accessed 14 Dec 2019.

2

Communication Sam Bradley, Hannah Crawford, and Hilary Nozedar

2.1

Overview

Communication is the means by which we, as social creatures, engage with others. This chapter considers communication in various forms from the perspective of our authors, a young man with a severe learning disability, his mother, and two Speech and Language Therapists. We consider the ways that communication skills normally develop and the strategies that we, and the people we work with, use to let others know our thoughts. We consider what is needed for communication to be successful and why this might be more difficult for people with learning disabilities. Factors that might influence communication, such as the complexity of a person’s mental and physical health, the environments in which they communicate, and the approach of people supporting them, are considered. Relevant legislation and strategies to support better communication are discussed with examples of where ‘reasonable adjustments’ have improved access to healthcare.

2.2

Initial Reflections

It is estimated that 50–90% of people with learning disabilities also have communication difficulties (Jones 2002). This may be problems understanding others, expressing themselves, or understanding the complex verbal and non-verbal information that enables people to make a connection with others, develop relationships and navigate social situations. Communication difficulties could be considered a S. Bradley (*) · H. Crawford Speech and Language Therapy, Tees, Esk and Wear Valleys NHS Foundation Trust, Darlington, UK e-mail: [email protected]; [email protected] H. Nozedar Darlington, UK © Springer Nature Switzerland AG 2020 P. Heslop, C. Hebron (eds.), Promoting the Health and Well-Being of People with Learning Disabilities, https://doi.org/10.1007/978-3-030-43488-5_2

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‘hidden disability’; they make it much harder for a person to tell others how they feel or what they need and can contribute to people with communication difficulties feeling isolated and unsupported. Exercise 2.1 Self-Reflection

1 . How do you communicate with others? 2. Why do you communicate with others? 3. What do you need to be in place for communication to be successful? Put your answers in three separate circles of a diagram as follows:

1

2

3

This diagram was suggested by Money and Thurman in 1994 and is known as the ‘Means, Reasons and Opportunities’ model. Question 1 addresses the Means of communication—how do we understand information and how do we get our message across to other people? For most people this will include a range of verbal and non-verbal methods. Your list may include speech, texting, email, emojis and writing and you may also have noted your use of facial expressions, body movements, eye contact and gesture. Other considerations might be your use of touch, personal space or even silence. The clothes we choose, the possessions we display and the hobbies we pursue also communicate information about our values, identity and motivations to others. Now think about some of the people you know with learning disabilities and consider their means of communication. Some of the options available to us may not be available to them. If a person can’t say ‘I’m really upset, I need some space for a minute to calm down’, they may develop behaviours to get what they need, such as hitting, spitting or screaming. It is our responsibility to identify the signs someone is becoming upset and find a better way for them to negotiate their time out. Question 2 considers the reasons for communication—why do we communicate? What do we do with the skills we have acquired?

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You may well have described various ways to get your needs met, to share and receive information, to take instructions, problem-solve or direct others. Have you included more social conversations? They are essential to how we are perceived by ourselves and others, and just as important for the people we support. Question 3 looks at what needs to be in place in order for communication to be successful—the opportunities for communication. In essence this is having adequate time and a suitable place, a partner and a shared language. This seems a short and achievable list but how often do we give our total attention to listen and be with another person? Successful communication sits in the central portion of the diagram. Without the means to communicate we can only be together, without a reason we have nothing to talk about. Are there wasted opportunities where attempts at communication are missed? Hilary says: ‘Alasdair can show you what he wants, it’s just going to take him longer. He can communicate in so many ways. Some days that may just be body language or facial expressions, he might vocalise and if it’s something he’s getting really distressed about he will vocalise. He can’t form the words but he can make simple signs, based on Makaton but adapted to the movements that Alasdair can make. When Alasdair was in hospital, we were asked if we would work with some junior doctors to help them practice their communication skills. One doctor was examining Alasdair, he was making his notes and later he was talking them through with the examiner. He said “he has involuntary movements”, and he’s right Alasdair does have some involuntary movements, but when he was asked for the evidence he said well when I was checking his reflexes his hands were making this movement. The examiner looked at me and said, can I clarify, is that a part of Alasdair’s communication? I said it is, it’s Alasdair’s sign for finish. Because he’d had enough. Alasdair was communicating with the doctor, but the doctor didn’t understand’.

2.3

Key Concepts

2.3.1 Communication Communication is the way in which we convey information from one individual to another using methods that both can understand. This can include talking and listening, but also may include reading and writing, facial expressions, pictures, objects, vocalisations and behaviours.

2.3.2 Comprehension Comprehension means ‘understanding’. With respect to communication, comprehension means that the individual has been able to pay attention when another was communicating, using whatever means, and was able to understand and interpret this communication appropriately.

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2.3.3 Expression Expression is how we communicate with others. There is a vast range of things we might want to communicate and could include our wishes, feelings, needs, thoughts and intentions. We can use a range of expressive methods which might include speaking, signing, writing, our facial expressions and our behaviours; we could use objects, or we could make sounds—vocalisations.

2.4

 hy Might Communication Be More Difficult for People W with Learning Disabilities?

2.4.1 Communication Effective communication relies on adequate levels of hearing and vision and the ability to focus on which movements and sounds are relevant in the sensory information being received. If the coordination of muscle movements is difficult, speech, signing, facial expressions and body movements will also be affected. People with autistic spectrum conditions are more likely to experience sensory stimuli from the environment in a different way, sometimes having hypo- or hyper-sensitivities to, for example, sound, light or touch (Leekam et al. 2007). The ability to tune in or out of the sensory information that we constantly receive is integral to coping with social situations and developing effective communication. Our communication skills are developed from early infancy, initially learning about eye contact, facial expressions, movements and sound-making from intimate contact with a caregiver. As the individual produces a sound or movement, they are generally either rewarded through a response (ideally positive) or ignored. The attempts that are consistently encouraged persist and those that are ignored are discontinued. In this way, behaviours are shaped into communication according to the response from the communication partner, a theory first introduced by Skinner in 1938. Staffing in the care sector can be a problematic issue, whether this relates to the permanence of staff employed to support people with learning disabilities or adequate staffing ratios that give time for relationships to develop and for staff to understand the person they support (Kings Fund 2019). Care organisations often rely on agency workers to supplement safe staffing levels which can affect the consistency of support a person receives. Staff may feel under pressure to complete household chores which appear relatively straightforward. If they feel unsure of how to interact with a person who uses a different or unfamiliar communication style, this may further demotivate staff from attempting interaction or positively reinforcing and engaging in communication with the people they care for. Where a person’s interactions are limited to their receiving directions and seeing staff prioritise other tasks over spending time with them, a reduction in well-being and self-esteem might be expected to follow.

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2.4.2 Comprehension It is not uncommon for people with learning disabilities to learn and repeat phrases or comments without fully understanding what they mean, which can give the impression of a higher level of understanding than they have. People develop strategies to cover up continued misunderstanding, such as acquiescence, nodding or repeating what others have said. Speech is often regarded as the most valued form of communication, but it is often the hardest to understand. It is only fleetingly available, requiring sufficient auditory memory to retain and process the instruction or comment. The meaning of some phrases may not be obvious or may be the opposite of the words used, for example, when using sarcasm. Metaphors and idioms such as ‘it’s raining cats and dogs’ and ‘he is green-fingered’ either need explicit explanation or to be avoided entirely. Some words are easier to understand because we have been exposed to them more often (higher frequency) or because they represent concepts that are easier to imagine (higher imageability). More abstract words (having lower imageability) can be harder to understand and use, and descriptions of time (hour, tomorrow, weekly) are often difficult. Concepts such as prepositions (an object’s position in space relative to something else, i.e. between, next to, behind) and pronouns (words to describe nouns, i.e. you, it, they, we) have the additional complexity of changing according to who is using them (i.e. the words ‘you’, ‘she’ and ‘her’ could all be used to describe the same person). Carers and other professionals often overestimate the understanding of people they support (Banat et al. 2002). It may be that the speaker has provided enough clues alongside their speech for their message to be understood. If you are feeling hungry (internal cue) and you eat your tea at the same time every evening (knowledge of routine), you can smell food cooking, hear cutlery being put onto the table, and see your family or friends sitting down to eat (multi-sensory cues), you may not need someone to say the words ‘it’s teatime’.

Exercise 2.2 Comprehension

Try to find a short clip of a TV drama show in a foreign language. Can you broadly follow the plot? Consider what helps if you don’t understand the words and jot down your thoughts. If you are familiar with the characters or the show you may have been able to guess what they are doing or have some insight into their behaviours. • How does their voice sound—think about how they alter their pitch (high and squeaky or low and bassy), volume (quiet to loud) and intonation pattern (rhythm) to let you know their emotional state, whether they are asking a question or making a statement, how urgent that message is or how they feel about the person they are talking to. • How do they use touch and what does this convey?

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• How close do they stand to the other person, how close are their faces? • What sort of gestures do they use and are these made with broad jerky movements or smaller and more fluidly? • What does their facial expression tell you? • What does their muscle tone and more general movements tell you about their emotional state? Are there any other behaviours that give information, for example, running away, laughing or crying? Although you may not have been able to get the full detail of the story you watched in Exercise 2.2, you are likely to have been able to read the feelings, relationships and intentions of the characters—and this is true of people who struggle to understand speech. We are more likely to trust the non-verbal over the verbal information and difficulties arise when the two do not match. For example, if someone is saying ‘everything is ok’ but has tense muscles, a frightened facial expression and high pitched, halting speech, we are still likely to feel afraid. Hilary says: ‘We had a terrible experience in hospital. Alasdair was really poorly, and I asked to meet with the consultant. When he arrived on the ward, he didn’t even look at Alasdair’s level of cognition or ask if he could communicate. He certainly didn’t try to communicate with Alasdair but approached his bedside and announced that his chest would eventually kill him. He didn’t contemplate what effect it would have on either of us, but he kept going in front of Alasdair. As far as he was concerned Alasdair didn’t have functional communication, so he didn’t need to alter what he was saying. Alasdair wouldn’t have been able to understand about the problems with his chest and the long-term plans, but he could certainly understand how distressed his mother was. The doctor hadn’t even registered Alasdair’s existence, introduced himself or even talked to me. I could tell he couldn’t make time to include Alasdair and it made me feel like Alasdair was worthless. If people don’t take the time or make an effort to engage with him, it doesn’t give Alasdair the chance to engage with them, to show them he can make choices. He had made no attempt to find out how much my child can understand or express himself. He told me he had found no evidence of communication, but he didn’t look for it. I went from being confident, trusting of people, able to leave him for short times in the care of others to having massive panic attacks. I lost all my confidence to care for Alasdair, I was so sure he could communicate’.

2.4.3 Expression Levels of understanding and expression are often assumed to be equivalent but there are many reasons why this may not be true. Many people experience some level of difficulty with expressive communication and this can result in reduced self-­ confidence and self-esteem as they struggle to let others know what they need or feel. The difficulty may be speech-based such as problems articulating sounds, or stammering, or it may be word-finding problems. Some people may be verbally fluent but

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experience difficulty with their pragmatic and social use of language, such as understanding how close to stand, how much touch to use, how loud to speak or how to use eye contact. The rules governing how we use these skills are often not explicitly taught and are influenced by culture, gender and age, so they may be expressed in different ways from person to person. For a person with cognitive or perceptual difficulties this can mean learning these skills are difficult. The consequence of poor pragmatic communication can be social isolation and low self-­esteem which are associated with poorer health outcomes (Trzesniewski et al. 2006; Jackson et al. 2014). For some people with more profound disabilities, their expression may be more reactive, a response to external or internal stimuli rather than an attempt to interact. For these individuals, there is a greater reliance on others to interpret what their behaviour might mean and to respond appropriately. Communication, like many skills, is refined with practice throughout a person’s life. We continue to employ those communicative overtures that are successful and abandon those that are not. Where a person has had limited opportunities to practice these skills, they are more likely to re-use the same comments or behaviours to start or end a conversation. This can often result in repetitive questions or statements. Echolalia is the condition in which an individual repeats words over and over, often the speech they have heard from others. This may be a device to help the person remember and support their auditory memory, for example, verbally repeating a telephone number while finding a pen to write it down. Some individuals with autism may remember phrases of speech and repeat them to either soothe or occupy themselves. Where a person is using echolalia when making choices, it will be important to check their decision by reversing and representing the options to them in a different way. Hilary says: ‘I usually felt I could read his non-verbal signs but once he could make hand signs it made such a difference. He has signs for yes, food, kisses, finish, more… it’s a small vocabulary but he can control an awful lot with these signs. It’s hard for him to make the signs so they start off quite small but eventually they get really big and I think of that as him shouting. We are so fortunate cos his carers read him like a book. So many times, he is starting communication and other people don’t realise’.

2.4.4 Making Contact Communication is not just about getting our daily needs met, it is about contact with others and it underpins our self-esteem, our self-worth, our identity, knowing who we are and how we fit into our communities. This might be our family unit, our home or the wider society we live in. Having social communication for the sole purpose of making connections is vitally important. Hilary says: ‘It’s not all functional. It’s so important to have a relationship with someone. Alasdair demonstrates that. He doesn’t get the opportunity to have physical contact unless it’s during personal care or physiotherapy. One of the carers will make a joke of it and you can see his face lighten when she does. He will sign for cuddles or kisses. He knows he isn’t allowed to have cuddles during personal care,

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but he will ask you to wind you up and then he starts grinning. He is having a laugh with you, but he needs to have some physical contact and he’ll request it’. Using an approach such as Intensive Interaction (Hewett and Nind 1998; Firth et al. 2008) can have a significant impact on the well-being of people with learning disabilities. Intensive Interaction asks carers to observe the movements and sounds that a person makes to either soothe or entertain themselves and to interact with these appropriately and so develop a positive interaction. This enables people and their carers to enjoy interactions that follow the same flow as verbal conversations, developing shared attention, turn taking and other foundation communication skills. More importantly it allows the person to know they are valued, that their company is worthwhile, and their personality is sufficient to keep us engaged. Hilary says: ‘Alasdair has had practice at initiating interaction, and he knows he deserves a response. For him it’s massive. When your needs are as complex as Alasdair’s it’s so important to build up that relationship so that he trusts you and wants to communicate with you. Because he’s dependent on other people he needs to know he can control some things, whether it’s asking for food or a hug or kiss’.

2.4.5 Symbolic Development To familiarise yourself with the concept of symbolic development, try Exercise 2.3. Exercise 2.3 Symbolic Development

Find an apple and hold it in your hand. Think about how you know it’s an apple? What clues are there? Jot these down as a list and then come back to this exercise. Hopefully, you have a list that includes size, colour, temperature, texture, weight, shape, smell, taste, stalk, core, pattern on skin, etc. but also experience—you’ve seen an apple before or that someone once told you something similar was an apple. Now consider tokens that also represent ‘apple’ and tick off the features on your list: 1. A plastic toy apple—which features from your list still apply? Size, colour, shape—but how about temperature, weight, smell, taste, etc.? 2. Colour photograph of an apple—again which features still apply? Is this true from all angles? 3. Black-and-white line drawing of an apple—again which features still apply? 4. Symbol of an apple—how much does this still resemble an apple. 5. Hand sign (BSL, Makaton, Signalong, etc.)—how much information remains to tell you this is an apple? 6. The sound of the word apple—how many clues remain to tell you what this is?

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The concept we are considering, ‘an apple’, is a concrete, high imagery concept that we are likely to have experienced many times before. The closer our ‘token’ for apple resembles a real apple, the easier it is to process and understand. As we move to less permanent, more abstract representations of the apple we become more reliant on remembering that certain shapes, movements or sounds represent the fruit that we have experienced before. When someone has a severe learning disability, this information may not have been retained in this way and so additional, more concrete clues are needed. This is the idea of symbolic representation and symbolic understanding. The toy, the photograph, the line drawing, spoken words and all the other ways of representing the apple are symbols. We can represent a range of, for example, concepts, items, actions, people with symbols. When we present information to someone, we should consider how best they can understand that information and whether additional clues are needed. For some people, having a choice of photographs will help to make an informed decision, for others real objects will need to be offered.

2.5

 trategies to Support the Communication Skills S of People with Learning Disabilities

2.5.1 Objects of Reference Understanding the development of symbolic understanding helps guide which approach is best for the person you are supporting or communicating with. People with more concrete understanding, who may have higher support needs, may benefit from real objects being presented when making choices or when moving from one activity to the next. For example, the individual could hold their horse-riding helmet while driving to a riding session. Offering a yoghurt or a piece of fruit may help the person to make an informed choice about which snack to have. Objects of Reference (Ockelford 1994) represent activities or items the person may wish to request and cannot access independently. Carers introduce a specific object alongside the activity to scaffold the person’s understanding that the object can be used as a token to exchange for the real activity or desired object, for example, using a flannel to represent having a foot spa. Over time it is hoped that the person understands that presenting the flannel to their carer will result in a foot spa being given. This approach is reliant on carers being consistent in their approach but can be very effective in allowing a person who has non-verbal methods of communication to make clear choices about activities and to anticipate what will happen next.

2.5.2 Visual Information The term ‘visual structures’ encompasses a range of symbolic tools, from formal and structured programmes such as Picture Exchange Communication System

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(PECS) (Bondy and Frost 1994) to more informal picture-based activity planners, shopping lists or recipe cards. Talking Mats™ (Murphy 1998; Watson et al. 2003; Murphy and Cameron 2005) is an evidence-based approach that supports people to focus their attention to the conversation, make meaningful choices and express their wishes and needs using a visual format. This approach is particularly useful for those with limited attention or memory problems as the information remains visible throughout the conversation. Technology increasingly offers helpful solutions in relation to communication aids that can be operated using fingertip touch, head or limb movements, or tracking eye gaze to produce speech output from a computer. Whether a communication aid is high tech (e.g. computerised voice output device), low tech (e.g. button switch to produce a recorded greeting) or no tech (paper-based communication book) the key to their success is in knowing how much information to offer and in the best format for the individual, e.g. drawings, photographs or symbols.

2.5.3 Hand Signing While objects and pictures provide a more permanent record of the topic under discussion, using simplified hand signing systems such as Makaton (Walker 1987; Lindsay et al. 2012) or Signalong (http://www.signalong.org.uk/) identifies the key words of a message while providing longer lasting but still temporary visual information. Hand signing requires no specialised equipment, only that users are sufficiently trained and encouraged to keep using signs. Signing naturally slows speech rate down which can allow additional processing time. In addition, Makaton signs are always used alongside speech, they do not replace speech, so they provide two methods with which to convey the speaker’s message.

2.5.4 Social Stories A social story (Gray and Garand 1993) is a story with pictures and/or objects of reference that features the person experiencing a particular situation. They are a tool that can help enable people with learning disabilities and/or autism to understand situations or learn new information. They do not seek to directly change a person’s behaviour, rather they offer education, an alternative perspective and an understanding of how social situations can work. By using a format that the person can understand, healthcare interventions can be described with prompts for what to expect to happen, who can help and why this would be beneficial. The story needs to be prepared well in advance of the anticipated experience, if possible, and repeatedly rehearsed, read, listened to and talked about with the person in a calm and supportive environment so that any concerns or questions can be addressed and the person can feel more able to manage. For example, having X-rays taken may feel frightening to someone and as a result they may resist going to the hospital. An accessible story, featuring the individual and showing pictures of the X-ray suite, the waiting

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area and staff, with a description of how the appointment will run, how long it will take and what will happen afterwards, may reduce the person’s level of concern.

2.5.5 Total Communication Approach Importantly, when presenting information verbally, we should be mindful of our own non-verbal communication and the potential message this is sending. A Total Communication approach asks people to make good use of their facial expressions, gestures and voices to support what is being said. This may include using objects or pictures from the environment as props to help illustrate a point. Avoiding complicated grammatical structures and presenting information in the order we expect things to happen is helpful. Shorter sentences and familiar vocabulary reduce the demand on the person’s auditory memory. Options may be offered as open questions, or limited according to the person’s processing skills; for example, it may be necessary to offer choices as forced alternatives such as ‘do you want coffee or tea?’ rather than ‘what would like to drink?’ The communication environment itself can influence how much a person feels able to interact with others, including how many people are in the room, the proximity in which people are seated, and whether there are distractions from a television, passageways or other noise sources.

2.5.6 Documentation and Sharing of Information The DisDAT tool (Regnard et al. 2007; Gibson et al. 2008) is a useful tool to identify situations that may distress individuals, and provides a detailed inventory of the subtle cues that indicate a person may be becoming distressed or in pain so that carers can intervene quickly to improve the situation. Effective documentation and sharing of information increases the likelihood of consistent support being offered. Communication passports (e.g. https://www.mencap.org.uk/advice-and-support/health/health-guides) describe the person’s communication style but also preferred partners, places and topics to engage with them. If the person is able and interested, they might like to help develop their own health passport. Families might be interested in helping too, as it’s important to involve those who know the person well to make sure all relevant information is included. Some areas or services have standardised formats for health passports; if this is the case you may have to consider whether any adjustments should be made to make it work for the person you support, for example, by adding photographs, a pain identification profile, or a box with Objects of Reference. Exercise 2.4 Communication Passport

Produce a communication passport for yourself. See: https://www. communicationpassports.org.uk/creating-passports/ You should consider how you communicate most effectively, the optimum environmental conditions for you, who you prefer to talk to and what you need them to do or not do.

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Relevant Legislation and Guidance

2.6.1 Mental Capacity Act As we will see in Chap. 3, the Mental Capacity Act (2005) provides a legislative framework to protect people who are unable to make their own decisions. Each step of the decision-making process requires carers and professionals to consider the person’s needs and to adapt their communication and the information they are presenting so that it is appropriate to them. Carers or professionals should consider how much information should be presented, whether the information could be explained in a more accessible way, or by a trusted person known to the individual. Additionally, it may be more appropriate to present the information at a particular time of day or in a specific location to maximise the person’s alertness and understanding, or to delay the decision until such time as the person is better able to engage in the process. For fuller information about the Mental Capacity Act see Chap. 3.

2.6.2 Accessible Information Standard In 2016, the government introduced the Accessible Information Standard (https:// www.england.nhs.uk/ourwork/accessibleinfo/). This requires all publicly funded health and social care organisations to adapt their communication to effectively meet the needs of disabled people. This necessitates a person-centred approach to identify the individual’s specific needs and tailor information to make it accessible and understandable for them. Information may need to be produced in an easy read format, recorded onto audio or video, or translated into sign, braille or other languages. With the person’s consent this information should be shared with other health and social care agencies to ensure that their preferred method of communication is documented, and appropriate support is consistently offered by everyone involved in their care.

2.6.3 Five Good Communication Standards The Royal College of Speech and Language Therapists ‘Five Good Communication Standards’ describes the reasonable adjustments to communication that should be made for people with a learning disability and/or autism (RCSLT 2013). The document recognises the challenges people may have and gives advice about good communication and what should happen in order to facilitate good communication. It also provides information about where to find resources and a checklist for individuals and organisations to check the standards are being met. The five standards are: 1 . There is good information that tells people how best to communicate with me. 2. Staff help me to be involved in making decisions about my care and support. 3. Staff are good at supporting me with my communication. 4. I have lots of chances to communicate. 5. Staff help me to understand and communicate about my health.

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 he Communication Needs of People When T Accessing Healthcare

Difficulties with communication, and professionals not understanding the needs of people with learning disabilities, are significant obstacles for people seeking support for their health needs. Hilary says: ‘I always tell people to introduce themselves. Alasdair doesn’t see so I ask them to touch his hand, talk to him, tell him what you’re going to do. If you do that, he will be so much more compliant with you. We had a difficult session with an orthotist. Because Alasdair can’t see he is going to startle if you just grab him and that shock of being touched suddenly can trigger a seizure. So often people don’t think to ask, so nowadays I tend to launch into a planned speech about Alasdair, and how to introduce yourself etc. I’m confident to do that now, but not everyone is going to feel able to do that with health professionals’. When professionals do make the right effort and adjustments, it can improve the experience of the person and the relationships between those communicating, and can also make tangible improvements to the success of the work. Hilary says: ‘Someone who got it right was Alasdair’s new physiotherapist. I didn’t have to tell her a thing. She had obviously looked at his notes before coming out to see us and knew something about his understanding and his communication. She introduced herself to me but then stepped around me to introduce herself to Alasdair. She asked if she could shake his hand to say hello and I could tell he liked her straight away. He responded so well with her. It is such a massive plus to the work, every time she can engage with him and he will engage with her. She did a big review of his posture needs which was really needed, it took a long time and was hard work for him, but they got through it together’. Professional carers who take the time to get to know people, to observe their communication style and preferred manner can also make greater achievements by adapting their approach. Hilary says: ‘Alasdair is quite tactile defensive around his face. One carer has worked out that, if she does a silly squeaky voice when she’s washing his face, he is really happy for her to keep going and actually signs for more. When his carers hoist him they tell him to ‘do the X-Factor’ - to keep his hands out of the way of the equipment. He can do it if you ask him in the right way, but then you have to let him know that he did the right thing and you can do that with lots of praise’.

2.8

Summary and Conclusions

Communication is the effective transfer of messages between individuals, using methods that both can understand. A primary method of communication is speaking and listening, but there are many other methods including reading and writing, behaviours, touch, use of objects, facial expressions and vocalisations. Between 50 and 90% of people with a learning disability have some difficulties with communication, either comprehension, expression or both. People with communication difficulties may have already developed strategies in response to these

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difficulties, so you need to check how much the person you are communicating with understands, and to think about ways to support your communication so that it is accessible for others to understand. If it is clear that an individual with a learning disability has preferred methods of communication and strategies that help them express themselves or understand the communication they receive, it is very important that these strategies are supported and used by all in a consistent way. When communicating think about the ‘mean, reasons and opportunities model’ for successful communication and take time to share in meaningful and rewarding communication.

Reflective Space

Before moving on to the next chapter, think about what you have learnt in this chapter and how it relates to your work supporting people with learning disabilities. In Exercise 2.1 you thought about the means, reasons and opportunities for communication to be successful both in terms of your own communication and that of people with learning disabilities. In Exercise 2.2 you considered how much information can be received from a verbal interaction without understanding the words that are being used. In Exercise 2.3 you thought about the additional information that might be needed to understand certain concepts. In Exercise 2.4 you considered what is important for your own communication in terms of partner approach, topic and environment. We have discussed a range of intervention strategies and described how these might relate to accessing healthcare. What will you do now to apply this learning? What actions do you need to take so that the people with learning disabilities that you support can communicate effectively with you?

2.9

Sources of Additional Information

DisDAT (disability distress assessment) tool. https://www.stoswaldsuk.org/medianew/1845/disdat-20.pdf Mencap Health Guides (for hospital passports). https://www.mencap.org.uk/ advice-and-support/health/health-guides Royal College of Speech and Language Therapists. Five Good Communication Standards. https://www.rcslt.org/-/media/Project/RCSLT/good-comm-standards.pdf. Accessed 16 Dec 2019. National Autistic Society. Social Stories and Comic Strip Conversations. See: https://www.autism.org.uk/about/strategies/social-stories-comic-strips.aspx

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References Banat D, Summers S, Pring T. An investigation into carers’ perceptions of the verbal comprehension ability of adults with severe learning disabilities. Br J Learn Disabil. 2002;30(2):78–81. Bondy A, Frost L.  The picture exchange communication system. Focus Autistic Behav. 1994;9:1–19. Firth G, Elford H, Leeming C, Crabbe M. Intensive interaction as a novel approach in social care: care staff’s views on the practice change process. J Appl Res Intellect Disabil. 2008;21(1):58–69. Kings Fund. (2019). Closing the gap: key areas for action on the health and care workforce. https://www.kingsfund.org.uk/publications/closing-gap-health-care-workforce Accessed 14 Dec 2019. Gibson L, Mathews D, Regnard C. Distress may be hidden but it is never silent! J Assoc Practitioner Learn Disabil. 2008;24(1):5–8. Gray CA, Garand JD. Social stories: improving responses of students with autism with accurate social information. Focus Autistic Behav. 1993;8(1):1–10. Hewett D, Nind M, editors. Interaction in action: reflections on the use of intensive interaction. London: David Fulton Publishers; 1998. Jackson C, Cavenagh P, Clibbens J.  Communication and self-esteem in adults with Down syndrome. Int J Lang Commun Disorder. 2014;49(3):275–87. Jones J. Factsheet: Communication, Worcester: British Institute of Learning Disabilities. 2002. Leekam S, Nieto C, Libby SJ, Wing L, Gould J. Describing the sensory abnormalities of children and adults with autism. J Autism Dev Disord. 2007;37(5):894–910. Lindsay G, Dockrell J, Law J, Roulstone S.  The better communication research programme: improving provision for children and young people with speech, language and communication needs. London: Department for Education; 2012. https://www.bettercommunication.org. uk/BCRP/DFE-RR247-BCRP1.pdf. Accessed 13 Dec 2019 Money D, Thurman S.  Talkabout communication. Bull College Speech Lang Therap. 1994;504:12–3. Murphy J.  Talking Mats: speech and language research in practice. Speech Lang Ther Pract. 1998;Autumn:11–4. Murphy J, Cameron L. Talking Mats: a resource to enhance communication. Stirling: University of Stirling; 2005. Ockelford A. Objects of reference. London: RNIB; 1994. RCSLT.  Five good communication standards. London: RCSLT. 2013. https://www.rcslt.org/-/ media/Project/RCSLT/good-comm-standards.pdf. Accessed 16 Dec 2019. Regnard C, Reynolds J, Watson B, Matthews D, Gibson L, Clarke C. Understanding distress in people with severe communication difficulties: developing and assessing the Disability Distress Assessment Tool (DisDAT). J Intellect Disabil Res. 2007;51(4):277–92. Skinner BF.  The behavior of organisms: an experimental analysis. New  York: Appleton-­ Century; 1938. Trzesniewski KH, Donnellan MB, Moffitt TE, Robins RW, Poulton R, Caspi A. Low self-esteem during adolescence predicts poor health, criminal behavior, and limited economic prospects during adulthood. Dev Psychol. 2006;42(2):381–90. Walker M. The Makaton vocabulary—uses and effectiveness. Paper presented at the International Afasic symposium of specific and language disorders in children, Reading, England. 29 March–3 April 1987. Watson J, Cameron L, Murphy J. Don’t just make the font bigger: talking Mats™—a tool for improving consultation with people with a learning disability. Learn Disabil Pract. 2003;6(7):20–3.

3

Decision-Making Sally Wilson and Liam Abraham

3.1

Overview

In this chapter the co-authors Liam and Sally explore the concepts, dilemmas and legalities of decision-making. The chapter starts with an explanation of what we mean by ‘decision-making’ and the key concepts of ‘capacity’, ‘supported decision-­ making’ and making decisions in a person’s ‘best interests’. A considerable focus of the chapter is the Mental Capacity Act (2005a) which applies to those who support people aged 16 and over living in England and Wales who may be unable to make some or all decisions for themselves. Using the Mental Capacity Act (2005a) as a framework, the chapter will discuss the process of making our own decisions, supporting others to make decisions, and making decisions on behalf of others.

3.2

Initial Reflections

When we started to consider this chapter, we reflected on the number of decisions we make every day, and this realisation was quite overwhelming. We all make decisions all the time. Sometimes they are ‘everyday’ decisions we make, almost subconsciously, for example, when we are choosing what time to get up, whether to have tea or coffee, what clothes to wear. If the decision is a big one, which could potentially change our lives, we often ask ourselves ‘Am I making the right decision?’ Making the big, potentially life-­ changing decisions can be tough, especially when the impact of those decisions lasts a long time and has a significant effect on our life. These are the decisions we naturally ponder over more, they often require the advice and support of others, and we may need more time to think about the decision. S. Wilson (*) · L. Abraham George Eliot Hospital NHS Trust, Warwick, UK e-mail: [email protected] © Springer Nature Switzerland AG 2020 P. Heslop, C. Hebron (eds.), Promoting the Health and Well-Being of People with Learning Disabilities, https://doi.org/10.1007/978-3-030-43488-5_3

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Exercise 3.1 Self-Reflection

What do you consider to be a big decision for you? Think about the last ‘big’ decision you had to make. What did you do to help you make the decision? Who did you talk to about the decision? What did you need from others to help you make the decision? We often take making decisions for ourselves for granted, but for some people this is not always the case. Some people with learning disabilities can make most of their own decisions, some just need some extra help, and some may be unable to make certain decisions at particular times and require the support of those in their lives to facilitate this. Some people with learning disabilities have a tendency to acquiesce or simply ‘go along’ with what a health professional suggests with no clear understanding of what the decision is (Mughal 2014). Others, particularly people with profound and multiple learning disabilities, are likely to have had fewer decision-making opportunities than others, and may need time for people to get to know and understand their communication and to understand their ability to make decisions. We will discuss the process of making our own decisions, supporting others to make decisions, and making decisions on behalf of others in this chapter.

3.3

Key Concepts

3.3.1 Decision-Making Decision-making is a cognitive process in which we identify a number of options based on our experience, values and ethics, and then choose one option to form the decision. Decision-making as a process can be broken down into seven stages: 1 . Identification—being aware there is a decision to be made. 2. Gathering information—it is always important to collect some information pertinent to the decision. 3. Identify possible alternatives—the process of gathering information usually results in finding a number of possible options which may or may not be considered. 4. Considering the evidence—it is important to evaluate the research and information gathered to ascertain which option would be the best to achieve the desired outcome. 5. Choose the option—once the evidence has been weighed up, the right option can be taken. 6. Take action—make the decision and implement the option chosen in Step 5. 7. Review the decision—consider the results of the decision-making.

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Using a staged process like this can help to make informed, considered and deliberate decisions and maximises the effectiveness of the decision-making.

3.3.2 Capacity Having mental capacity means that a person is able to make their own decision. Support workers will often have to assess a person’s capacity to make particular decisions. The first of the key principles of the Mental Capacity Act (2005a) is that we have to assume a person has capacity unless we can prove otherwise, so we need to assess their capacity every time a decision is needed. It must be remembered that any assessment of capacity must be date, time and decision specific. If you need to assess a person’s capacity to make a decision, the Mental Capacity Act (2005a) states that you need to apply the two-stage test of capacity: 1. Does the person have an impairment of mind or brain? (a) Is this impairment likely to be reversible with treatment? (b) Does this impairment mean the person is unable to make the decision for themselves? If the person does have an impairment of mind or brain, you need to check the second stage of the test of capacity: 2. Can the person fulfil these four requirements? (a) Can the person understand the information given to them? (b) Can they retain the information? (c) Can they weigh up the benefits versus risks involved in the decision-making? (d) Can the person communicate what they choose? It is important to note that just because a person has an impairment of their mind or brain, or cannot, for example, understand the information given to them, this doesn’t automatically prohibit them from being able to make their own decision, but they are likely to need additional support (see below). Another key principle of the Mental Capacity Act is that if a person chooses to make a decision that other people think is unwise, this does not necessarily mean that they do not have the capacity to make that decision—you would need to test their capacity in the way described above.

3.3.3 Supported Decision-Making Another key principle of the Mental Capacity Act (2005a) is that we have to help people to have capacity, for example, using pictures, symbols or audio prompts, before we decide that they lack capacity to make a decision. Supported decision-­ making is about reducing or removing any barriers that could prevent a person from being able to make a decision for themselves. Note that this is different to shared decision-making which is when the person makes a decision in collaboration with others.

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3.3.4 Best Interests Decision-Making If a person has been assessed as lacking capacity to make a particular decision, the principles of best interests must be followed. The fourth key principle of the Mental Capacity Act is that when making decisions for people who have been assessed as lacking capacity, they must be made using the Best Interests decision-making process—this includes speaking with next of kin, considering the least restrictive option and considering what the person may want if they were able to make the decision for themselves. Best interests decisions are bespoke individual plans and there is clear guidance for professionals and support workers about the delivery of best interests decision-making: • The person must be involved even if they lack capacity. • The person’s next of kin must be involved. • Consideration must be given as to what the person would want. While persons’ views are not paramount in the best interest’s decision-making, those making the decision must have strong justification for overruling a person’s wishes (Griffith and Tengnah 2015). • Consideration must be given as to whether the person will regain capacity to make the decision for themselves, and if it is possible to delay decision-making until this happens. • Options relating to the decision must be recorded. • Advantages and disadvantages of each option must be recorded. • The final decision must be the least restrictive that is possible (this is the fifth and final key principle of the Mental Capacity Act (2005a)). • All members of the best interests’ decision meeting sign the plan. • Where there is disagreement about what would be in the person’s best interests in relation to the decision to be made, there may need to be an application to the Court of Protection for an independent ruling on the decision.

3.4

The Legal Framework of the Mental Capacity Act (2005a)

The Mental Capacity Act (MCA) applies in England and Wales and is relevant to those who support people aged 16 and over who may be unable to make a particular decision for themselves at a particular time, be that for a temporary or permanent reason. It was implemented in 2007 and provides the first legislative framework to protect people who are unable to make informed decisions for themselves. The Act covers who can make a decision on a person’s behalf, and in what circumstances they can make specific decisions. It also sets out roles for decision makers with the aim of reducing the risk of abuse of vulnerable people. Furthermore, the Mental Capacity Act criminalises the wilful neglect or mistreatment of a person who lacks capacity to make decisions about their care and treatment (Manthorpe et al. 2013).

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As a support worker you may be very familiar with helping people to make day-­to-­day decisions about what they will wear, the food they eat, or the activities they engage in. For some people you support it may be easy to ascertain their capacity to make decisions for themselves and their capacity to make certain decisions may not change over time. Other people may be able to make some decisions, but not others. In general, decisions that have serious consequences, such as a change of residence or major surgery for example, require the most structured approach to decision-­making. The Mental Capacity Act applies whenever there is doubt about a person’s capacity to make a particular decision for themselves at a particular time. In essence, the Mental Capacity Act has a very simple framework with five key principles which we have already mentioned. As a reminder they are: 1 . Assume the person has capacity unless you can prove otherwise. 2. Help people to have capacity to make their own decision wherever possible. 3. People who have capacity are entitled to make decisions that other people may think are unwise. 4. When making decisions for people who have been assessed as lacking capacity, they must be made using the Best Interests decision-making process. 5. Decisions made on behalf of people who cannot make their own decisions should be the least restrictive possible. In addition, and fundamental to the Mental Capacity Act is the four stage assessment where people must consider whether the individual for whom the decision needs to be made can (1) understand the information (2) retain this understanding for long enough to (3) weigh up the risks and benefits of the decision before (4) communicating the decision. Being unable to fulfil any stage of this process can result in the person being deemed to lack capacity to make a decision. The Mental Capacity Act Code of Practice explains how the Mental Capacity Act works on a day-to-day basis and gives examples of it in practice (see the Resources section below). All professionals and support workers have a legal duty to follow the Code of Practice as well as the Mental Capacity Act itself, but in a recent survey of qualified nurses in England and Wales, over half of the respondents felt the Act was not being used in clinical practice as much as it should be (Santry 2016). In order to comply with the Mental Capacity Act Code of Practice it should be the person most closely connected with the specific decision who should assess the person’s capacity to make that decision. For example, the decision to have one-to-­ one support in an acute hospital to minimise risk of falls is a nurse-led decision and therefore the nurse’s responsibility to complete the assessment; on the other hand, a decision to perform a surgical procedure is a clinician-led decision and as such the consultant prescribing the treatment should complete the assessment. In any care setting, professionals and support workers must assess the person’s capacity prior to delivering interventions (McHale 2009). If the person lacks capacity to make a particular decision, the professional must assess what plan of care, procedure or intervention is in the patient’s Best Interests, following the

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process described above. Best interest care plans for people who lack capacity to make decisions about their own care and treatment can pose significant ethical dilemmas for health and social care providers; adults who have capacity can make what others might consider to be unwise decisions about their care, such as refusing treatment or discharging themselves from hospital, but people who lack capacity, under the Mental Capacity Act, may be subject to what they perceive to be restrictive practice. We have already seen that the Mental Capacity Act allows restraint and restrictions to be used, but only if they are in a person’s best interests, and decisions should be the least restrictive possible. Where a planned intervention may restrict the person, Best Interest planning must facilitate the best outcomes for the person whilst also protecting the staff delivering the intervention (Cowley and Lee 2011). If the restrictions or any restraint used would deprive a person of their liberty in a care home or hospital, extra safeguards are required. These are called the Deprivation of Liberty Safeguards (DoLS). In other settings, it is the Court of Protection that authorises the deprivation of liberty. DoLS are an amendment to the Mental Capacity Act (2005a) and apply only in England and Wales. Care homes or hospitals must ask a local authority if they can deprive a person of their liberty (it is called ‘requesting a standard or urgent authorisation’). There are currently six requirements for a person to be considered for DoLS: 1 . The person is aged 18 or over. 2. The person has an impairment of mind or brain. 3. They lack the capacity under the Mental Capacity Act to decide to be accommodated in the hospital or care home. 4. They have not made any valid advanced decisions about their care and treatment and they do not have a Lasting Power of Attorney for their health and welfare, or their Lasting Power of Attorney has not made any decisions about care and treatment. 5. They are not eligible to be detained under the Mental Health Act. 6. It is in the person’s best interests to be deprived of their liberty. In addition to this, there must be the application of the ‘Acid Test’ following the 2014 Cheshire West court cases in which we must consider: 1 . Is the person subject to continuous supervision and control? 2. Is the person free to leave? For a person to be deprived of their liberty they must be subject to both continuous supervision and control AND not be free to leave (see Samuel 2014). If a DoLS authorisation is given, a key safeguard is that the person has someone appointed with legal powers to represent them. This is called the relevant person’s representative and will usually be a family member or friend.

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Other safeguards include rights to challenge authorisations in the Court of Protection, and access to Independent Mental Capacity Advocates (SCIE 2017). There is a current proposal with government which seeks to change some of the legal processes within DoLS and these are anticipated to become live in Autumn 2020 (Department of Health and Social Care 2018). The Care Act 2014 strengthened safeguarding responsibilities for healthcare providers and set out statutory responsibilities for all care providers including nurses who are delivering care to people with care and support needs. A key aspect of the Care Act is making sure that people are supported to make their own choices and decisions as much as possible without coercion (Green 2015). It has been acknowledged that failure to include patient and nurse in clinical decisionmaking may threaten dignity and safety for vulnerable patients (Nyholm and Koskinen 2015).

3.5

 ecision-Making in Practice Within the Framework D of the Mental Capacity Act

Here we consider decision-making in practice within the framework of the Mental Capacity Act, using the experiences of Jane who is a lady with learning disabilities who Sally used to work with. At Jane’s request we have changed her name and some of the diagnostic detail to protect her identity. Jane’s Story Part 1

Jane lived alone in a warden controlled flat. She had moderate learning disabilities and some physical health needs. She had a good network of friends who helped her to read and respond to her letters, but no formal paid support. Jane had a problem with her toe and required a procedure under general anaesthetic to remove her toe. At Jane’s request, the learning disability liaison nurse at her local hospital supported Jane before and after her surgery. Jane was clear that she did not want carers; she had planned how she would manage with the help of her friends. There was some discussion about whether Jane had the capacity to make this decision, but she recovered well after her operation. Three months after her surgery, Jane bought a pair of shoes she liked. She wore them while out shopping with her friend, and they rubbed a blister on her ankle. Her health support worker (who was visiting Jane to help her manage her asthma) advised her not to wear the shoes until the blister healed, but Jane ignored that advice and the blister became infected and ulcerated.

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Jane’s Story Part 2

Jane’s infected ulcer continued to get worse. The district nurse applied dressings but Jane was unable to keep them on and on one occasion asked her friend to change the dressing because it had become soiled and she didn’t like its smell. Jane’s support worker learned how to change the dressing so that it could be changed more frequently but after a few months the ulcer required surgery. After the surgery Jane was unable to weight bear, her mobility was significantly compromised and she was struggling to move from her bed to a chair. The physiotherapist was not happy for her to be discharged from hospital without some care being in place for her. Jane declined to have a carer saying that her friends would help her.

Pause for Reflection

Do you think that Jane understood the risks she was taking? What would you do if you were Jane’s support worker?

Pause for Reflection

Do you think that Jane had the capacity to make the decision about her care when she was discharged from hospital? How would you assess her capacity to make the decision?

Jane’s Story Part 3

An assessment of Jane’s capacity to make a decision about her care when she was discharged from hospital concluded that Jane did not have the capacity to make this decision. In particular, she was unable to weigh up the risks of not having support at home with her. Jane was, however, able to contribute her views as to what she wanted for herself. A Best Interests decision-making process was followed and it was agreed that Jane should be referred to the Intermediate Care Team for short-term care.

Pause for Reflection

Who should be involved in the Best Interests decision-making process? What should be considered when making a decision in Jane’s Best Interests?

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Making Decisions for Ourselves

Decision-making can be complicated and diverse; we all use a variety of mechanisms and resources when making decisions. This can range from asking family and friends for advice, using internet search engines and online forums, to reading formal research papers. Liam shares his experience of making a particular decision below. Liam’s Story

Several years ago, Liam was in a lot of pain and finding it difficult to move about. He was told that he would need to have a total hip replacement. It was a big decision for him to make. Initially Liam did not want to have surgery as he was frightened of being put to sleep and having an operation. Liam discussed the decision with his health support worker and his family. Liam’s family advised him to have the surgery; his mum had had a good experience of limb surgery herself and was keen to make sure that Liam’s pain was better controlled. Liam’s consultant also advised him to have the surgery. They discussed how important his mobility and his independence were to him. Without the surgery Liam risked having to have carers and/or move to a supported living setting. It took Liam some time to weigh up the risks and benefits, and he eventually chose to have the surgery. When Liam was in hospital, he did not have his hearing aids with him. This meant that he had additional difficulty understanding some of the nurses as he was not able to hear them clearly. Liam has some good reading skills, but he needs any print to be on yellow paper and in large font. This was not available in the hospital. Liam felt the hospital staff, particularly the nurses, made a lot of decisions for him and this made him feel “weak” and disempowered. For example, at home Liam can menu plan, shop and cook his own meals from scratch, but in hospital the nurses chose his food for him because there was no pictorial menu and Liam was not able to hear the options being read to him. Liam suggested that ‘It’s not always what you know but it is always who you know’.

Exercise

Think about Liam’s experience in hospital. As a support worker, how could you help him to make decisions for himself? Now think about what you considered in the exercise at the start of this chapter in relation to making decisions for yourself. How could you help Liam to have the support that you needed when making your decision?

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Helping Someone Else to Make a Decision

Supporting people to be able to make decisions for themselves can be time consuming, but it can make a real difference to the person being supported and it is a vital part of supporting people with learning disabilities. When supporting a person to make a decision for themselves, the Mental Capacity Act Code of Practice requires that we need to consider the following: • Does the person have all the information they need to make the decision? • Could the information be presented differently to support their understanding, such as in pictures or in sign language? Could you suggest any alternative ways for the person to tell you their decision if they cannot tell you in words, such as by eye gaze, nodding, blinking or squeezing your hand? • Help the person to feel at ease. Are there any particular times of the day, or certain places or different words we could use which will improve the person’s understanding? Can you remove any distractions such as background noise to help the person to concentrate? • Is there anyone who can help the person make the decision? You could involve the person’s family, friends, carers or other professionals, or seek advice from someone who has experience of making a similar decision, or someone who has expert knowledge of the decision to be made. So how can we ensure that the person being supported fully understands the information they need? There are many ways in which we can support the delivery and understanding of new information. As support workers we must be sure to assess the specific needs of the person and to tailor the information to suit them. First, therefore, we need to understand what the person requires to support their understanding. Some people prefer verbal information, conversations and discussions about the decision and what is needed to make it happen. Other people prefer information to be written down, or in pictures or symbols to help them understand what will happen if they make a particular decision and what it will involve. Using pictures and symbols can be effective as the person can return to it several times to remind themselves of the information. Audio visual information is also very useful to support people to understand what will happen, and it can help the person to visualise what will happen to them—something that is especially useful for medical procedures as the person can see the environment they will be in and what they can expect to happen. Everyone can be supported to make some everyday decisions for themselves, and this forms a good grounding for making more significant decisions at another time. The best way to learn to make decisions is to practice. One way you can support decision-making is to start with helping people to make small decisions. For example, helping someone to choose what clothing to wear, even from a choice of two outfits, through talking, or touching, or eye pointing, can be a small but significant step in building confidence to increase the number of decisions and the extent of decisions.

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Making a Decision in a Person’s Best Interests

The ‘Best Interests’ decision-making process requires consultation with close relatives or friends, and anyone engaged in caring for them, an attorney appointed under a Lasting Power of Attorney or Enduring Power of Attorney, or a deputy appointed by the Court of Protection to make decisions for the person. The consultation should seek to establish: • What the views of the person themselves would be in relation to the specific decision that needs to be made. • The person’s past and present values and wishes, including moral, political and religious views. It is clear from the Mental Capacity Act that relatives and those supporting the person should ‘put themselves in the shoes’ of a person without the capacity to make a specific decision, and to contribute their views about what they think the person would want. Everything possible should be done to encourage the person to take part in the decision-making, including, if necessary, postponing the decision until they are able to contribute to it. You could also consider what the person has told you is important to them in the past; look at other sources of evidence about their preferences, such as films or pictures or notes they have written; or notice and record their behaviour and reactions to events—this can tell you about their wishes and feelings that they may not be able to express in words. The Act also specifies that assumptions should not be made on the basis of age, appearance, health condition or behaviour. Someone making a decision on behalf of a person who lacks capacity must also consider whether it is possible to minimise any impact on the person’s rights and freedom. When a person’s wishes about their own care differ from the treatment proposed by their doctors, it can pose ethical dilemmas as health professionals struggle to balance their legal obligations against safety requirements, personal choice and a person’s inclusion in decision-making. Griffith and Tengnah (2015) have noted that since the introduction of the Mental Capacity Act in 2007, there appears to have been an increased trend in risk aversive practice when people are unable to make their own decisions. The principle of autonomy should be one of the guiding principles in decision-­ making for vulnerable patients. Not only the Mental Capacity Act but also the Francis Inquiry (2013) and the Care Act (2014) emphasise that people should have as much involvement in decision-making as possible. However, the principle of autonomy is not absolute in the complex arena of decision-making for complex situations (Purtilo and Doherty 2005). Given the complexity of decisions that may need to be made in relation to the serious medical treatment of a person who lacks capacity, Dimond (2015) argues that healthcare professionals should have a working knowledge of moral and ethical issues and the law in relation to healthcare delivery.

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3.9

Summary and Conclusions

In this chapter we have discussed the complexities of decision-making, how we get support for making our own decisions and who helps us. We have also thought about the legal framework of the Mental Capacity Act which supports people when they cannot make decisions for themselves. The five key principles of the Mental Capacity Act are essential to remember and to put into practice in our work supporting people with learning disabilities. The first principle is that everyone is assumed to have capacity unless proved otherwise. If we are assessing the capacity of a person to make a decision, we should be considering if the person can understand the information given to them, if they can retain the information, if they can weigh up the benefits versus risks involved in the decision-making, and if they can communicate what they choose. If we are involved in making a decision in the Best Interests of a person without capacity to make a particular decision at a particular time, we need to put aside our own views and place ourselves ‘in the shoes’ of the other person to focus on what their own views or wishes would be. Although our focus in this chapter has been making decisions relating to health and healthcare, the principles we have discussed are relevant for all decision-making.

Reflective Space

Before moving on to the next chapter, think about what you have learnt in this chapter and how it relates to your work in supporting people with learning disabilities. In the first exercise you thought about a decision you had made, and what support you needed to make it, such as access to information, talking about it with people you trust, having a trial period of something if that was possible, etc. Now think about the people with learning disabilities that you support. How do they make decisions, and how do they access the support they need? What more could you do to help they become more confident in making their own decisions? Think about the people you support who may not have the capacity to make specific decisions. We considered Jane’s story. Jane appeared to have fluctuating capacity and a particular decision needed to be made in her Best Interests. Do you now feel more confident to follow the Mental Capacity Act, assess a person’s capacity and contribute to a Best Interests decisionmaking process? And do you now also feel confident enough to challenge those who don’t follow the Mental Capacity Act as they should? If not, what additional training do you need so that you work within the law? You should speak to your manager about this.

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Sources of Additional Information Mencap Mental Capacity Act Resource Pack for family carers of people with a learning disability.https://www.mencap.org.uk/sites/default/files/2016-06/mental% 20capacity%20act%20resource%20pack_1.pdf Mental Capacity Act (2005b). Code of Practice. London: The Stationary Office. https://www.gov.uk/government/uploads/system/uploads/attachment_data/ file/497253/Mental-capacity-act-code-of-practice.pdf Skills for Care. Mental Capacity Act pocket-sized guidance. https://www.skillsforcare.org.uk/Documents/Standards-legislation/Mental-Capacity-Act/MentalCapacity-Act-card.pdf Social Care Institute for Excellence. Mental Capacity Act resources. https://www. scie.org.uk/atoz/?f_az_subject_thesaurus_terms_s=Mental+Capacity+Act+2005

References Care Act. 2014. http://www.legislation.gov.uk/ukpga/2014/23/contents/enacted. Accessed 29 Jan 2020. Cowley J, Lee S. Safeguarding people’s rights under the Mental Capacity Act. Nurs Older People. 2011;23(1):19–23. Department of Health and Social Care. Department of Health response to the Law Commission’s consultation on mental capacity and deprivation of liberty. 2018. https://www.gov.uk/ government/publications/deprivation-of-liberty-standards-dols-consultation-response/ department-of-health-response-to-the-law-commissions-consultation-on-mental-capacityand-deprivation-of-liberty. Accessed 29 Jan 2020. Dimond B. Legal aspects of nursing. Harlow: Pearson Publishers; 2015. Francis R. Report of the mid Staffordshire NHS Foundation Trust Public Inquiry. 2013. https:// www.gov.uk/government/publications/report-of-the-mid-staffordshire-nhs-foundation-trustpublic-inquiry. Accessed 29 Jan 2020. Green, D. Safeguarding and protection of vulnerable adults. Nursing and Residential Care Journal. 2015;17(5). Griffith R, Tengnah C. Determining a patient’s best interests. Br J Community Nurs. 2015;16(5):250–3. Manthorpe J, Samsi K, Rapaport J. Capacity is key. Investigating new legal provisions in England and Wales for Adult Safeguarding. J Elder Abuse Neglect. 2013;25:355–73. McHale J. Capacity to consent—healthcare and adult patients. Br J Nurs. 2009;18(10):639–41. Mental Capacity Act. 2005a. London: The Stationary Office. http://www.legislation.gov.uk/ ukpga/2005/9/contents. Accessed 29 Jan 2020. Mental Capacity Act. Code of practice. London: The Stationary Office; 2005b. https://www.gov. uk/government/uploads/system/uploads/attachment_data/file/497253/Mental-capacity-act-­ code-of-practice.pdf. Accessed 29 Jan 2020 Mughal F. Understanding and using the Mental Capacity Act. Nurs Time. 2014;110(21):16–8. Nyholm L, Koskinen, CA. Understanding and safeguarding patient dignity in intensive care Nursing Ethics [online] 2015 available at https://journals.sagepub.com/doi/abs/10.117 7/0969733015605669?journalCode=neja (last accessed January 2020). Purtilo RB, Doherty RF.  Ethical dimensions in the health professions. London: Elsevier Saunders; 2005. Samuel M. Supreme Court ruling heralds sharp rise in Deprivation of Liberty Safeguards cases. Community Care Online. 2014. https://www.communitycare.co.uk/2014/03/19/supremecourt-ruling-heralds-sharp-rise-deprivation-liberty-safeguards-cases/. Accessed 29 Jan 2020. Santry C. Improved Mental Capacity Law training wanted ‘by majority of staff’. Nursing Times 2016. https://www.nursingtimes.net/news/education/improved-mental-capacity-law-trainingwanted-by-majority-of-staff-08-11-2016/. Accessed 29 Jan 2020. SCIE. Deprivation of Liberty Safeguards (DoLS). At a glance. 2017. https://www.scie.org.uk/mca/ dols/at-a-glance. Accessed 29 Jan 2020.

4

Behaviour Dave Williams and Michael Mulhall

4.1

Overview

This chapter focuses on how to work alongside people who have been described as having ‘challenging behaviour’. In particular, it describes the key components of Positive Behaviour Support, a values-based, person-centred approach used for supporting people with learning disabilities whose behaviour challenges others. The chapter draws on the reflections of Michael, a man with learning disabilities who has been receiving Positive Behavioural Support since moving from an Assessment and Treatment Unit many miles from his home town to his own home in his local community.

4.2

Initial Reflections

Have you ever become frustrated when things go wrong? Have you ever shouted to get your point across? Have you ever slammed a door in frustration? If so, you have displayed what is often called challenging behaviour. Whilst we can find it easy to justify why it occurred in ourselves and continue our daily routine, if you have a learning disability then it is highly likely that you will be ‘labelled’ as having challenging behaviour. This label often remains with the person; over time the reason (function) for the behaviour will get lost and only the label remains.

D. Williams (*) · M. Mulhall Salford Royal NHS Foundation Trust, Salford, UK e-mail: [email protected] © Springer Nature Switzerland AG 2020 P. Heslop, C. Hebron (eds.), Promoting the Health and Well-Being of People with Learning Disabilities, https://doi.org/10.1007/978-3-030-43488-5_4

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Exercise 4.1 Self-Reflection

Think about your own life. List ten behaviours you have displayed over the last 6 months. Can you identify the reason why you displayed these behaviours? If you were introduced to new friends by the ‘challenging’ behaviours you may have displayed, how would this make you feel? When Dave first started working in learning disability services the person’s label and their behaviour seemed far more important than the person’s name and something positive about them. This was so when he first met Michael—Dave was told far more about the negative parts of Michael’s life than Michael actually wanted him to know. It was only when they started to approach this differently that they could work together to help Michael to plan the next stage of his life, make friends with others, move out of the Assessment and Treatment Unit and into a new home with his friends. What they did differently was to use Positive Behaviour Support.

4.3

Key Concepts

4.3.1 Challenging Behaviour Behaviour is described as challenging when it: ‘is of such an intensity, frequency, or duration as to threaten the quality of life and/or the physical safety of the individual or others and it is likely to lead to responses that are restrictive, aversive or result in exclusion.’ (Royal College of Psychiatrists et al. 2016. p. 8). Challenging behaviour can include aggression, self-harm, destructiveness or disruptiveness. The term ‘challenging behaviour’ is intended to emphasise that some behaviours pose a challenge to carers, professionals and services. However, as highlighted above, although we all display behaviours that could be described as challenging at times, describing a person with learning disabilities in this way can often result in the label being attached to them for life.

4.3.2 Functional Assessment A functional assessment looks at the function of (or reason for) the person’s behaviour. It is based on the idea that our behaviour serves a purpose, whether we realise it or not. If we can understand the function of, or reason for, a person’s behaviour, we can devise strategies that will help them to find alternative behaviours to achieve the same outcome. The Challenging Behaviour Foundation (n.d.) suggests that there are four main functions of behaviour:

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• To obtain social attention: a person’s behaviour may be a good way of getting other people’s attention, even if it is negative. • To obtain something: a person may learn particular behaviours that will help them to get what they want, such as food, or certain objects. • To escape something: a person’s behaviour may help them to avoid things they don’t like or don’t want to do. • For sensory stimulation: sometimes people enjoy the feeling that certain behaviours give them, such as rocking or humming.

4.3.3 Positive Behaviour Support The core aim of Positive Behaviour Support (PBS) is to improve the quality of life of the person and those around them by preventing and reducing challenging behaviour. The key elements of PBS are: • Developing an understanding of the challenging behaviour displayed by an individual, based on a comprehensive assessment of the social and physical environment and broader context within which it occurs, and including the views of those involved in supporting the person. • Using this understanding to develop, implement and evaluate the effectiveness of a PBS plan which provides personalised strategies as alternatives to these behaviours to enhance the quality of life for the person concerned and those supporting them (Gore et al. 2013). The strategies suggested in a PBS plan may be proactive or reactive. Proactive strategies identify approaches to be used before the behaviour starts—these should be used to support the person all the time, for example, in relation to supporting them to communicate well or to develop their day-to-day living skills. Reactive strategies are the least restrictive interventions that maintain everyone’s safety whilst supporting the person as they are displaying the behaviour.

4.4

The Key Components of Positive Behaviour Support

Positive Behaviour Support became government policy in England in 2014 as part of the ‘Positive and Proactive Care’ approach (Department of Health 2014). In 2015, the National Institute of Clinical Excellence (NICE) published guidance about the support that should be provided for people displaying challenging behaviour, which included some of the key components of PBS, such as functional analysis (NICE 2015). PBS should now guide the delivery of an evidence-based range of strategies that place the person with challenging behaviour at the centre of their support plan.

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Table 4.1  The key components of PBS (adapted from Gore et al. 2013) Values

Theory and evidence base

Process

The prevention and reduction of challenging behaviour is directly associated with: • Improved quality of life • Inclusion in one’s community • Participation in one’s community • Valued social roles PBS should lead to reductions in restrictive practices, whilst increasing and improving: • Confidence • Skills • Opportunities • Assessment • Positive interventions • Evidence-based practice Plans, decisions and interventions are informed by and delivered through: • Data about the challenging behaviours being displayed • Assessment of the function of the behaviours • Proactive strategies to be used before the behaviour starts • Reactive strategies to be used when the person is displaying the behaviour • Monitoring and recording • Evaluation

The key components of PBS adapted from Gore et al. (2013) are summarised in Table 4.1 below.

4.4.1 Values PBS is underpinned by a number of human rights and values-based approaches, including person-centred planning (O’Brien and O’Brien 2002). It develops and builds the skills of the person and of those who support them, rather than using aversive unpleasant or restrictive interventions. Partnership working is key, and practitioners work together with the person and those who support them to actively include them in the PBS approach.

4.4.2 Theory and Evidence Base The conceptual model underpinning PBS regards challenging behaviours as being functional and serving a purpose; the behaviours are learnt by the person as they attempt to exert influence and control over their life and are maintained because of the way that they are responded to. Thus, the behaviours are not considered to be due to a mental health condition or a deliberate attempt by the individual to cause problems for themselves or others (Hastings et al. 2013).

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The evidence base for the PBS plan for an individual should be based on a comprehensive assessment (previously described as functional assessment or understanding the purpose of behaviours), which also recognises the impact of previous experiences on a person, and a range of views, including those of the person themselves and those who support them.

4.4.3 Process The PBS process is underpinned by clear human rights values, and based on the best available evidence, not personal opinion or circumstance. The PBS process is structured in the following way: • Collection and analysis of data relating to the behaviour concerned. This includes an examination of what happens before, during and after the behaviour, how intense it is, how often it happens and how long it lasts. • The design and implementation of a number of strategies to reduce the person’s unwanted behaviours and enhance their lifestyle opportunities and well-being. • The regular review and revision of support plans to ensure that they reflect the person’s current needs. Specialists in PBS may undertake the assessment and design of the PBS support plan, but support workers have an important role in contributing information and evidence at the assessment process, supporting the behaviour support strategies and evaluating their effectiveness. The better the quality of information from support workers, the more likely it is that the assessment will be accurate and lead to effective strategies and improved outcomes for the person. PBS isn’t something to only use when something isn’t going well; PBS needs to be used all the time as an approach that continually supports the individual with their behaviours. Its aim is to reduce the likelihood of challenging behaviour occurring, and although particular behaviours may stop, the PBS approach should then be reviewed and adapted to meet the new circumstances, rather than withdrawn altogether. PBS is person centred, so no two PBS plans will be the same, even for people living in the same environment as each other.

4.5

 upporting People with Learning Disabilities Whose S Behaviour Challenges

4.5.1 Always See the Person Rather than Their Behaviours We have already mentioned that challenging behaviours almost always have a function and will have been maintained by the responses of others. It is vital to see beyond the behaviour itself, and to focus on the person and what that behaviour might mean to them.

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It is important to remember that any differences in behaviour could indicate physical discomfort, so you will need to ensure a person’s physical health is checked if they behave differently. Because of the difficulties many people with learning disabilities have in explaining symptoms of illness, there is a danger that their behaviour is what is noticed and addressed, not the physical health problems at the root of their behaviour change. It is vital that support workers have a good understanding of the person themselves and can recognise how a person’s behaviour might change when they are physically unwell. Susan Cooper, in Chap. 6, describes how she recognised that the change in her brother’s behaviour was due to a health problem although his support workers had thought that it was because he had had a busy day. It is also important that people with learning disabilities are supported to have annual health checks and regular dental and eye checks to identify any potential health problems early. We all have differing attitudes, formed during our early stages of life and shaped by a wide range of experiences and exposure to different influences. The people you support may have had a number of different placements and some may have been subjected to or witnessed abusive practices. These experiences can influence a person’s ability to trust others and their feelings of security. When supporting people, whether they are displaying challenging behaviours or not, it is important to be aware of their history and the ‘journey’ they have had to get to the place they are now. Our past experiences of trauma have a significant impact on our future lives and the effectiveness of any care and support we may need. The support we provide needs to take account of such experiences—this is referred to as Trauma Informed Care (Becker-Blease 2017). Trauma Informed Care focuses on the physical, psychological and emotional safety of a person, and helps them to build a sense of control and empowerment.

4.5.2 Enhance Your Communication Skills It is vital to be able to understand the messages people are trying to tell you, but also to be able to communicate in a way that the person can understand you. The importance of good communication has been highlighted throughout this book and is the focus of Chap. 2. Understanding an individual’s own communication and considering how we communicate with people using appropriate strategies (for example, Makaton) is vital to the success of PBS. All communication is important in helping us to build rapport with people, implement PBS plans and help people to develop new skills. Alongside developing and using our own communication skills, it is vital that we help the people we support to develop their communication skills too. Supporting people who may have challenging behaviour requires constant consideration of the person and any messages that they may be trying to communicate.

4.5.3 Provide a Capable Environment and Active Support Challenging behaviour is more likely to occur in environments that are poorly organised and unable to respond well to the needs of the person (British Psychological

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Society 2016). In 2012 and 2019, the BBC exposed abusive practice in hospital settings and reported it in the ‘Panorama’ programme. This stimulated discussion about the ‘right model’ of support for people with learning disabilities, the importance of people with challenging behaviour to remain in their own homes and communities, and the need for ‘capable environments’. ‘Capable environments’ are characterised by positive social interactions, support for meaningful activity, opportunities for choice, encouragement of greater independence, support to establish and maintain relationships, and mindful and skilled support and care workers and family members (NHS England et al. 2015). Capable environments make people feel safe which supports the development of trusting relationships between the staff and those they support. Within a capable environment, support staff should use the model of ‘active support’. The provision of active support has a demonstrable impact on the quality of life of people with learning disabilities (Mansell and Beadle Brown 2012). Active support enables a person to engage in meaningful activity and relationships at home and in the community, and to gain greater control over their lives, become more independent and become more included as a valued member of their community. Learning new skills and making our own choices are an important part of becoming more independent and of ‘active support’. We should never underestimate how powerful it can be to be able to make choices and for people to respect those choices.

4.5.4 B  e Reflective About Our Own Attitudes and the Support We Provide A focus of PBS is evaluating if the support plans in place are effective. There are many ways we could measure this, including the number of incidents of challenging behaviour, being able to live in the least restrictive environment possible and improvements in the person’s quality of life. Accurate and good quality recording forms and diary sheets, for example, can be used to evidence this. When we are writing support plans or PBS plans it is vital that we involve the person themselves, their families and other services involved in delivering support. This co-production approach will support the person to understand their plans, and involving the family means that any information or appropriate history can be reflected in the plan. If all services are involved the writing of the plan this should help with the consistency of delivery and the person will know exactly what support they should expect to receive, whatever the setting. The effectiveness of a support plan will depend in large part, on our own attitudes towards the people we support and the impact of the support we provide. Working with people who are displaying behaviours can be difficult and at times distressing; accepting this and letting managers know should not be seen as a sign you aren’t able to do the job. Staff must have regular supportive and reflective supervision with their manager to allow a safe space to express their feelings and examine their own beliefs and attitudes, in order to reduce the danger of impacting negatively on the person being supported. Supervision should provide an opportunity for

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support staff to receive feedback on their performance and to develop their skills and knowledge. It can also provide a preventative function if the support worker is demonstrating signs of stress or compassion fatigue. As well as routine supervision sessions, support staff should have the opportunity to debrief following any incidents of challenging behaviour, in order to reflect on the situation and the impact it has had on them and others around them. The aim of a debriefing session should but to learn how to support people better in the future.

4.6

 imple Strategies to Support People S with Challenging Behaviour

Below are some simple strategies that can be incorporated into day-to-day work with people with learning disabilities that could help avoid or manage challenging behaviour. • Do get to know the people you support and care about them as well as for them. • Don’t make assumptions about people; their behaviour usually has meaning for them. • Communicate well with those you support. Listen to their views and feelings and help them to express themselves in ways that do not involve challenging behaviour. • Give people choices in their lives. Encourage people to be independent by expressing their needs and wishes and having support to do what they want to in their life. • Reflect on what happened before and after any incidents of challenging behaviour. Complete relevant documentation accurately and as fully as possible. Reflect honestly on your own or others’ role in contributing to, or maintaining a person’s challenging behaviour. • Keep up to date with current best practice. Don’t be too busy to attend training and up-date courses, and regular supervision.

4.7

Summary and Conclusions

This chapter described the key components of Positive Behaviour Support for people with learning disabilities and challenging behaviour, and some practical ideas, drawn from Michael’s experience, for staff to provide safe and effective support. Key to this is the need to provide person-centred support. When we work with someone with challenging behaviours it can sometimes feel difficult to identify solutions, and it may take some time before we feel there is a noticeable difference. You will make a significant difference if you always respect the person you are working alongside and have a clear aim (as individuals and a team) as to the opportunities you are going to be able to provide for the person you are supporting. There

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is sometimes a pressure to stop challenging behaviours, but this can often reduce opportunities for people and limit their engagement in activities. Ensuring that the person is doing as many fun activities that they are interested in is important in effecting a reduction in challenging behaviour.

Reflective Space

When Dave and Michael meet up and Michael tells Dave about the things he is doing (with and without support) and the plans he has for the future, it is difficult for Dave to recognise the Michael he first met. Think about the content of this chapter and any people with challenging behaviour that you support. • What do you know about their past and the experiences they have had? • What do you know about their feelings and thoughts and what they currently like doing? • What skills would they like to develop and what experiences would they like to have during the next 12 months? Sources of Additional Information  British Institute of Learning Disabilities Centre for the Advancement of Positive Behaviour Support. http://www.bild.org.uk/ capbs/capbs/ Challenging Behaviour Foundation. A charity for people with severe learning disabilities whose behaviour challenges. https://www.challengingbehaviour.org.uk/ supporting-you/for-families/for-families.html Positive Behaviour Support Academy. A collective of organisations and individuals in the UK who are working together to promote Positive Behavioural Support in the UK. http://pbsacademy.org.uk/ Skills for Care. Positive Behaviour Support. https://www.skillsforcare.org.uk/ Learning-development/ongoing-learning-and-development/behaviours-whichchallenge/Behaviours-which-challenge.aspx

References Becker-Blease KA.  As the world becomes trauma–informed, work to do. J Trauma Dissoc. 2017;18(2):131–8. British Psychological Society. Challenging behaviour—a unified approach. Update. 2016. https://www.bps.org.uk/news-and-policy/challenging-behaviour-unified-approach-updatedapril-2016. Accessed 24 Jan 2020. Challenging Behaviour Foundation. What is it. n.d.. https://www.challengingbehaviour.org.uk/ learning-disability-files/Page-6.pdf. Accessed 25 Jan 2020.

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Department of Health. Positive and proactive care: reducing the need for restrictive interventions. 2014. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/ attachment_data/file/300293/JRA_DoH_Guidance_on_RP_web_accessible.pdf. Accessed 25 Jan 2020. Gore NJ, McGill P, Toogood S, Allen D, Hughes C, Baker P, et al. Definition and scope for positive behavioural support. Int J Positive Behav Support. 2013;3(2):14–23. Hastings RP, Allen D, Baker P, Gore NJ, Hughes CJ, McGill P, et al. A conceptual framework for understanding why challenging behaviours occur in people with developmental disabilities. Int J Positive Behav Support. 2013;3(2):5–13. Mansell J, Beadle Brown J. Active support: enabling and empowering people with intellectual disabilities. London: Jessica Kingsley Publishers; 2012. NHS England, Local Government Association and ADASS.  Building the right support. 2015. https://www.england.nhs.uk/wp-content/uploads/2015/10/ld-nat-imp-plan-oct15.pdf. Accessed 25 Jan 2020. NICE.  Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges. London: NICE; 2015. https://www.nice. org.uk/guidance/ng11. Accessed 25 Jan 2020 O’Brien J, O’Brien CL, editors. Implementing person-centred planning, voices of experience. Toronto: Inclusion Press; 2002. Royal College of Psychiatristy et al. Challenging Behaviour: a unified approach-update. 2016

5

Accessing Health Services Mo Gharraph, Jonathon Lenaerts, and Gwen Moulster

5.1

Overview

In this chapter Jonathon and his dad Martin explain how healthcare has worked for them and for Jonathon’s brother Matthew. Mo and his mum Nevine also describe their experiences. Emotional and physical health issues are included with a focus on their experiences of access to preventative, planned and emergency care and the provision of any reasonable adjustments required for this.

5.2

Initial Reflections

Accessing healthcare and information about our health can be confusing, frightening and complicated for some people. Health staff do not always have a good understanding of the needs of people who have learning disabilities or autism (Ali et al. 2013; Hemm et al. 2015; Pelleboer-Gunnink et al. 2017) and some may not recognise the value of the knowledge that a family member or carer has of the person (Parliamentary and Health Service Ombudsman 2009; Heslop et al. 2013; Mazars 2015). Modern technology designed to help people can add to the confusion. For example: • Automated booking can be off-putting, especially if a person needs ‘reasonable adjustments’ (see below) to access an appointment at all. • Asking for results of tests can be difficult, especially when a phone call connects the caller to a machine. • Access to the internet enables people to find out more about what a problem might mean and how and where to get help; however, information found online can be inaccurate, incorrect or complicated. M. Gharraph · J. Lenaerts · G. Moulster (*) Gwen Moulster Consultancy, Hampshire, UK © Springer Nature Switzerland AG 2020 P. Heslop, C. Hebron (eds.), Promoting the Health and Well-Being of People with Learning Disabilities, https://doi.org/10.1007/978-3-030-43488-5_5

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For those who can’t read, any written information or correspondence provided may be ignored, given to someone else, or even thrown away. There are risks associated with this, a vulnerable person may share personal and confidential information inappropriately or may miss an important health appointment. Invitations to screening programmes can worry people who don’t understand why they are asked to attend a health appointment they haven’t requested. Hospital care can also be fraught with difficulties, and in an emergency a person may wait a long time to see someone, adding to their distress. Exercise 5.1 Self-Reflection

Think about the last three times you accessed healthcare. • What did you want from the healthcare professional? Did you want a diagnosis or a prescription? Were you attending for specific treatment? • How did you know where to go and what to do when you got there? Did you need a map or to ask someone for directions? Did you know where to wait, did you have a choice? • How did you feel?

5.3

Key Concepts

5.3.1 Preventative Healthcare Preventative healthcare aims to prevent disease or illness occurring, and to identify and detect disease before any symptoms of it are noticeable. Examples of preventative healthcare activities include screening programs to support the early identification of ill health, annual health checks, vaccination or immunisation programmes, sports and fitness activities, healthy eating advice and support, sexual health checks, oral health checks, and the provision of well-being support. Preventative healthcare can be provided by a person’s GP and a range of other services in the community.

5.3.2 Planned Care Planned care is when a person is referred to hospital by their GP for further tests or treatments. Their care is planned in advance and thus not an emergency.

5.3.3 Emergency or Urgent Care Emergency care is available for life-threatening illnesses or accidents which require immediate, intensive treatment. Emergency care can be provided by ambulance services and emergency departments at hospitals.

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Urgent care is provided for illnesses or injuries that require urgent attention but are not life-threatening. Urgent care services in England include a phone consultation through the NHS 111 Clinical Assessment Service, pharmacy advice, out-of-­ hours GP appointments, and/or referral to an urgent treatment centre.

5.3.4 Reasonable Adjustments to Care The Equality Act 2010 requires healthcare professionals to make ‘reasonable adjustments’ to enable equal access to healthcare for disabled people. Reasonable adjustments are intended to overcome the disadvantage disabled people experience in accessing and receiving effective care, so any adjustments must enable a person to receive the same effective care that is provided to all patients if it is reasonable to do so. This is different from merely providing good quality care, which should be provided to all people; reasonable adjustments build on the provision of good quality care to ensure that disabled people are not disadvantaged (Heslop et al. 2019). The Act describes three main ways in which reasonable adjustments may be provided: • Changing a practice, policy or procedure that makes it challenging for disabled people to access or use services. • Changing a physical feature to remove, change, or provide a reasonable way of avoiding barriers such as steps, doors, toilets or signage. • Providing additional aids or services where it would assist disabled people, such as using British Sign Language interpreters, or providing information in an alternative format. Reasonable adjustments can be made at an individual or service level. Individual level reasonable adjustments are adjustments made for a specific person, e.g. this could be enabling someone to take a meaningful possession with them when they go to have a procedure that causes them anxiety. However, it is crucial that reasonable adjustments made for an individual are personalised, rather than simply selected from a checklist. For example, giving easy-read information to a person who cannot read is not an appropriate reasonable adjustment. A reasonable adjustment ‘flag’ is currently being piloted which is built into the NHS England Information Technology system. Health professionals can create the flag with the patient and/or carer (taking account of Best Interest decision making processes— see Chap. 3). The flag contains details of the reasonable adjustments an individual requires and can be accessed by authorised health professionals and administrative staff across the country. It complements the existing recording of reasonable adjustments locally and enhances the effectiveness of initiatives such as the national accessible information standard (see Chap. 2). Service level reasonable adjustments are made by services for groups of people who may have similar needs. These could be in the form of alterations to buildings by providing lifts, wide doors, ramps and tactile signage; or changes to policies,

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procedures and staff training to ensure that services work equally well for disabled people. The acute liaison nurse role is an example of a service-level reasonable adjustment. The role of the nurse is to champion the needs of people with learning disabilities in hospital by providing or advising about clinical care, providing education about the needs of people with learning disabilities to staff, and ensuring that policies, guidelines and resources are mindful of people with learning disabilities (Tuffrey-Wijne et  al. 2013). In addition, identifying the information needs of patients with learning disabilities is a vital aspect of the acute learning disability liaison nurse role (MacArthur et al. 2015). Information about investigations, treatment or possible reasonable adjustments must be adjusted to the person’s level of understanding and given at an appropriate time (Brown et al. 2016). Family carers also value the role of acute liaison nurses in relation to aiding communication and providing information (Castles et al. 2014). Family carers, paid supporters and people with learning disabilities may not be aware of the types of reasonable adjustments that services can put in place. Therefore, good information about the support that can be given should be made available. See the resource list at the end of this chapter for sources of information.

Jonathon and Mo’s Top Tips for Making Reasonable Adjustments When Supporting Someone to Access Healthcare

• It may help for the person to have easy to understand information about what to expect before attending a health appointment. A social story (see Chap. 2) might help to prepare a person for what to expect. • Don’t make a person who may be scared wait too long. Some people get worried and anxious and the longer they wait the worse they feel. • Arrange somewhere quiet for the person to wait, if possible. • Look at any information the person brings or that is available online before seeing the person. • Give the person time to speak and listen carefully to them. • Talk slowly and clearly and check if the person understands what you are saying. Don’t use words that others can’t understand. • Look at the person, not the computer or any notes when speaking with a person, as they may not hear you very well. • Some people don’t like being talked about, so don’t talk to their family or carer about them when they are in the room, without checking if that’s ok first. • Explain what the things in the room are for and if you might want to use any of them. Allow extra time so you can explain or show the person things, using pictures, Makaton, or other easy to understand information. • Some people prefer to see professionals they already know, particularly if they find change difficult, so they don’t have to keep repeating their story and they feel better understood. If the person does need to see someone new, explain who the health professional is and what they do.

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• Some people need someone who knows them well and knows what has been happening with their health to come with them to the doctor. Check that the carer supporting a person knows them well. If they don’t, check the information with someone who does know the person well. Remember I am me! I am not the same as everyone else, so getting to know me well, the things I like and the things I dislike or fear, will be the best way you can help me access good health care. I need to feel safe and to trust the people who are caring for me.

Exercise 5.2 Making Reasonable Adjustments

Reflect on the information above about reasonable adjustments. Can you think of an example of where you have made a reasonable adjustment so that the person you were supporting was able to access healthcare? What difference did it make to the person you made it for? What do you think could have happened without it?

5.3.5 C  onsent, Mental Capacity and Best Interests Decision-Making In order to access health services and to consent to treatment we need the mental capacity to do so. If a person lacks the capacity to decide by themselves, a Best Interests decision-making process must be followed, as required by the Mental Capacity Act. For more information about the Mental Capacity Act, see Chap. 3.

5.4

 ccess to Healthcare for People A with Learning Disabilities

5.4.1 Preventative Healthcare Helping a person to access preventative healthcare can be an effective way of reducing their likelihood of ill health. In this section we will focus on how you can help people to access Learning Disability annual health checks, screening programmes and flu vaccinations.

5.4.1.1 Learning Disability Annual Health Checks Annual health checks for people with learning disabilities are a useful way of checking for existing illness that is not yet noticed and/or for unmet health needs that can be addressed. They are particularly important for those who are unable to say how they feel. Research has shown that when people get these checks, they are less likely

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to have preventable hospital admissions (Carey et al. 2017) and more likely to have previously unrecognised health needs identified (Robertson et al. 2011). At the health check the doctor or nurse will check the person’s weight, blood pressure and heart rate and they usually take blood and urine samples. They ask quite a lot of questions so they can find out if the person has any health problems or needs help to stay well. They will check for any concerns about epilepsy, problems with swallowing or constipation, or if they have any emotional or mental health issues. If the person has a health condition like diabetes or asthma, the doctor or nurse will check how they are doing. They will check any medication the person takes and find out about care the person is getting from other health providers like the dentist or the podiatrist. They will also ask about any specialist health or social care, for example, from members of the learning disability or mental health team. Part of the check includes questions about how the family or carers are doing and any help they need to support the person with their healthcare. The doctor or nurse may make referrals to others if necessary. At the end of each health check the person should receive a Health Action Plan, a personal support plan, which details what the person or those who support them can do to maintain or manage any existing health concerns and to stay healthy. Families and carers can help in the development of health action plans and make sure these are implemented by supporting the person to access the healthcare advised. At the annual health check the GP should update the person’s Summary Care Record. The Summary Care Record is an electronic record of a small amount of important health information about an individual that is available across the whole of the NHS; people can request additional information to be shared if appropriate. Families and carers can help by providing information to the GP on how the person is when they are well, how they respond to pain or illness and how they have been since the last health check. Keeping a record of health events such as appointments, illnesses, and use of unprescribed medication like paracetamol for pain is useful to contribute to the annual health check.

5.4.1.2 Health Calendars and Records There are a variety of health calendars in use. Some are a visual person-centred prompt that detail a person’s upcoming health appointments, screening and events. Using pictures of people like the dentist or podiatrist, places like the GP surgery or hospital and those who will provide support like a family member or carer can help to prepare someone for a health appointment. Health Calendars can also be used as part of anticipatory care when someone has a long-term life limiting condition. For example, the Cheshire and Merseyside clinical network and Merseyside and Cheshire Cancer Network have developed an Anticipatory Care Calendar for people with learning disabilities or dementia (see the Resources section below). This provides a record of how a person is month by month and helps improve the daily oversight of a person’s health and well-being. It can highlight when changes are happening so carers can respond quickly.

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Other health calendars or diaries are designed to record health incidents such as seizures and asthma attacks. These calendars detail dates, times, duration and what happened before, during and after an incident to aid diagnosis, a review of the person’s medication and their treatment plans.

5.4.1.3 Health Screening Programmes All people should be able to access health screening programs, and where required, services should make reasonable adjustments to enable access for people with learning disabilities. Table 5.1 summarises the screening programmes applicable to people with learning disabilities. Some people may find it difficult to attend health screening, even with the provision of reasonable adjustments, and you may need to ask for support from a specialist learning disability nurse or clinical psychologist who has skills in desensitizing anxiety about frightening health situations. You could also ask specialist learning disability health professionals to help by providing accessible health education information about the screening required. 5.4.1.4 Flu Vaccinations In addition to health checks and screening programmes, flu vaccinations are a key priority for people with learning disabilities (Public Health England 2018). Respiratory conditions are a major cause of death of people with learning disabilities, and since 2014 they have been entitled to a free annual flu vaccination and a pneumonia vaccination if they have respiratory problems. Where someone is anxious about needles, the nasal spray flu vaccination, which is a less invasive alternative, can be used as a reasonable adjustment. Each year the GP practice will send out a letter inviting the person with a learning disability to attend for a flu vaccination. Families and carers have an important role in supporting people to understand where possible and in reassuring and supporting people to have the vaccination. Public Health England (2018) provides easy read leaflets and posters giving advice on why flu vaccination is Table 5.1  Health screening programmes applicable to people with learning disabilities Screening programme Learning disabilities annual health check NHS health check Eye test Auditory check Cervical screening Cervical screening Breast screening Bowel screening Abdominal aortic aneurysm screening

Frequency Yearly Every 5 years Every 2 years or as directed by your optician Every 3–4 years Every 3 years Every 5 years Every 3 years Every 2 years Once

Eligibility People with learning disabilities aged 14 years and over Men and women aged 40–74 Adults with learning disabilities Everyone Women aged 25–49 Women aged 50–64 Women aged 47–73 Men and women aged 60–74 Men aged 65

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important, signs to look out for that might mean someone has flu and where to get a flu jab. Side effects are very rare, after the injection the person may have a slightly achy arm for a few days, or mild cold symptoms. If the person is not happy to attend the surgery, a reasonable adjustment might need to be made. As with any medical intervention it is important to seek consent if the person has capacity, or to consider if it is in the person’s best interests. It may be necessary to ask for support from the learning disability team to help ensure the least restrictive approach.

5.4.2 Planned Health Care Planned healthcare is care when a person is referred to hospital by their GP for further tests or treatments—it is planned in advance and thus not an emergency. There are several tools that support workers could use to help a person with access to planned healthcare. A hospital or healthcare passport is one of these. The passport contains key information about the person, identifying who is involved in their care package and supporting effective collaboration and coordination of care. It can be used when the person is admitted to hospital and at other health appointments. Community learning disability teams and hospital liaison nurses or primary care facilitators often help in developing these, but the knowledge the family and carer have of the person they support is essential to make sure the passport is truly person-centred. Up-to-date healthcare passports that include information not normally gathered though routine history taking or assessment can really help health professionals. Most hospitals now use a version of a healthcare passport, but you can create your own version if you prefer, some examples are included in the resources section of this chapter. Some care providers have standardised health passports; if this is the case, consider whether any reasonable adjustments should be made to make it work for the person you support. For example, adding photographs, advice on signs, a pain identification profile, or a box with objects of reference. The community learning disability team can help by working with you and the person to find out what they might find difficult about accessing healthcare and introducing strategies that might help, e.g. desensitization, advance visits, familiarisation of people and equipment and assisting other health staff to make reasonable adjustments. Hospitals often have acute liaison nurses who can support planning hospital admission, treatment and discharge.

5.4.3 Emergency or Urgent Healthcare Families and carers have an important role in establishing baselines for wellness and in identifying changes signifying deterioration in the health of the person they are supporting. Early recognition of these changes can be crucial in preventing

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hospital admission or in initiating timely treatment. It is essential that any deterioration in a person’s health is detected and acted on quickly. We know from reviews of deaths that some people die because those caring for them have not noticed or reacted quickly enough to a change in the person’s health (Heslop et  al. 2013). People with learning disabilities are particularly vulnerable because they often rely on others to spot the signs that they are unwell. Signs of potential deteriorating health can include any of the following: Change in consciousness or awareness—including subtle changes such as increased anxiety, confusion or restlessness; changes to the heart or pulse rate, dizziness or feeling faint; a high (above 37.50C) or low (35.0C or below) body temperature, chills or shivering; a change in breathing—breaths sounding different to usual, using effort to breathe, nostrils flaring when breathing, or having a cough; a change in skin colour—mottling of skin, rash, pallor, blueish tinge to lips; a change in bowels—diarrhoea or vomiting, distended abdomen; a change in urine output—in quantity, colour or smell of urine; or other changes including pain, the person not feeling well, or showing changes in their appearance or behaviour. Families, support workers and others who know the person well often need to follow their own intuition about a person. If they think the person is deteriorating, they should take action quickly. A person may show small changes in behaviour that are known indicators of a change in their health. For example, they may become more sleepy than usual, or they may be increasingly restless. They might demonstrate an increase in behaviours that challenge, for example, hit themselves or others, or damage things around them. The sounds they make might change—quieter, louder, different tones or at different times to usual. Other changes might be noticed, for example, facial expressions, type and range of movement, or responses to touch may differ. These more subtle signs can be essential in early detection and appropriate responses to ill health and should never be ignored. If someone needs to access emergency care, make sure you give the health professional as much information as possible. Health professionals often use a process called SBAR (Situation, Background, Assessment, Recommendation) recommended by NHS Improvement, to improve communication between multiple professionals and ensure health changes are responded to appropriately. SBAR is a helpful way of structuring information when reporting your concerns about a person’s health: Situation—who you are, who the person is, signs and symptoms, what your concerns are; Background—how long the person has been ill, when their condition changed; Assessment—what you think the problem is; Recommendation—what you want to happen. It provides clear information meaning people are more likely to access emergency services when they need to, even though some of the signs and symptoms of their illness may be different from those displayed by people in the general population. For more information see the resources at the end of the chapter. Families and support workers could also helpfully have an emergency grab sheet at home, or a ‘message in a bottle’ in the fridge, so they always know where to find

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it in case of a health emergency. A grab sheet might include information on known health conditions, medication and how it is taken (e.g. liquid, tablet, in food), information about how to communicate effectively with the person, how the person responds to pain, important information about next of kin, personal information such as date of birth, the name and contact details of the GP and other important phone numbers. The number of emergency hospital admissions in England has risen by 42% over the past 12  years, despite efforts to reduce this number (Steventon et  al. 2018). Evidence suggests that people with learning disabilities are more likely than people in the general population to be admitted to hospital as an emergency for an ambulatory care sensitive condition (ACSC). ACSCs are those where effective management at the primary care level should avoid admission to hospital. Glover and Evison, for example, reported that compared to people in the general population, people with learning disabilities were 25% more likely to be admitted to hospital as an emergency, and 70% more likely to be admitted to hospital as an emergency related to an ACSC.  Common ASCS conditions for which people with learning disabilities are admitted to hospital are epilepsy and convulsions, constipation, complications of diabetes and influenza/pneumonia (Glover and Evison 2013). Kelly et al. (2015) also raised concerns about preventable readmissions to hospital of people with learning disabilities, reporting that 60% of emergency readmissions within 7  days could have possibly been prevented, indicating that discharge planning for people with learning disabilities may be problematic.

5.5

 upporting People with Learning Disabilities S to Access Healthcare

5.5.1 Accessing a Service that Meets the Needs of an Individual Person-centred care is important. It ensures the person is at the heart of decision making, planning and intervention. It considers their likes and dislikes, their worries and fears and the things that really matter to them. When services are inflexible and people are expected to fit in, it can create problems for people who need a bespoke approach to enable them to access good healthcare. The lack of person-centred approach can result in considerable distress and even in someone not being able to access the healthcare they need. Sometimes a simple change can make a lot of difference, e.g. the time or location of a meeting or appointment. At other times, a comprehensive reasonable adjustment approach is needed. Jonathon, Matthew and Mo share their stories below about the importance of accessing health services that meet their needs.

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Jonathon’s Story

Jonathon’s future was uncertain, but his friends were planning to go to University and get jobs. At the same time, health problems in his family and the death of his grandfather meant things at home were changing. It made Jonathon feel different, but not in a good way. Jonathon started to worry to a degree that significantly affected his life. He was referred to the specialist health team and seen by the consultant psychiatrist who prescribed medication and referred him to an art therapist for support. Jonathon didn’t find the art therapy helpful and didn’t understand why the therapist wanted him to draw pictures. Later, Jonathon changed to a different therapist and he found him more helpful. He listened to Jonathon and helped him express his feelings.

Matthew’s Story

Matthew has Down’s syndrome, learning disabilities, autism and severe epilepsy. He finds lots of things frightening, dislikes noise and finds hospital waiting rooms distressing. Matthew uses the special dental service and the staff do everything they can to make the environment feel calm and safe for Matthew. They always explain what everything in the room is for and let him get used to the room and look at equipment first. They are aware that Matthew doesn’t like to feel restricted or constrained and take measures to avoid this.

Mo’s Story

Mo used to be scared of going to the dentist and had lots of problems with his teeth. The dentist allowed him to just sit in the chair until he got used to it. Now the dentist explains what is going to happen (e.g. ‘a sharp scratch’ or ‘a little pinch’). He has a TV on the ceiling, and lets Mo choose what he wants to watch, or he can bring his own video. These are examples of services meeting the needs of an individual and, if necessary, making good reasonable adjustments so that they can access appropriate healthcare. The service that Jonathan was accessing provided a different therapist for him when it became clear that the existing approach was not working for him; Mo coped well with visiting the family dentist, who had identified the things that made him feel safe so that he was able to cooperate with treatment; Matthew was provided with a specialist service that was better able to meet his complex needs.

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5.5.2 P  roviding Effective Advocacy to a Person Accessing Health Services People who have learning disabilities often need others to help them to speak up for themselves or to advocate on their behalf. This may be because a person cannot communicate well verbally, the assumptions of others about quality of life, or diagnostic overshadowing where the health professional assumes that the person’s behaviour or symptoms of illness are due to them having learning disabilities, without exploring other causes such as pain or a health condition. You may want to consider what additional training (e.g. epilepsy training, training in assertiveness) you might need to be able to effectively advocate for someone. Some people who have learning disabilities belong to self-advocacy groups where they develop confidence and learn how to speak up for themselves. When someone is unwell, they may not feel able to self-advocate, and will require someone to help them. Advocates are often family members, carers, friends, professionals or paid professional advocates, who help by speaking up for the person to help them to express their views and wishes, and to support them to get their needs met. Even advocates can face challenges though, as Matthew’s story below indicates.

Matthew’s Story

Matthew has complex epilepsy. He was taken to hospital because he was having lots of seizures. The doctor admitting Matthew to hospital insisted Matthew shouldn’t be given any medication until after tests. The carers explained he needed his medicine, or he would continue to have seizures. When Matthew’s dad Martin got to the hospital, he spoke to staff on the ward asking them to give Matthew his medicine, or let his care staff give it, but they refused. Matthew was in hospital for 7 hours still having seizures before he was seen by the ward doctor. She was surprised his medicine hadn’t been given. Martin and Matthew’s carers had unsuccessfully challenged the hospital staff who were refusing to give Matthew his seizure medication. They did not listen to those who knew Matthew best, and did not go back to the doctor to check the instructions or request these be reconsidered. This could have resulted in Matthew becoming more unwell and increased his risk of dying prematurely.

5.5.2.1 Making Advocacy More Effective Using the example of Matthew’s circumstances, a carer could try the following: • Always carry a letter from the usual consultant/GP about what to do about medication in case of emergency admission. • Make sure hospital passport and health action plan is up to date and this is given to and read by healthcare staff. • Ask if there are good medical reasons for the decision not to give Matthew his medication, to help you to understand the decision.

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• Ask the admitting doctor to check the instruction with the consultant. • Ask to speak to the matron responsible for care, explain the potential catastrophic outcome of Matthew not being given his anti-epileptic medication. • Ask to speak to the consultant as a matter of urgency, on the phone if necessary. • If within normal working hours, contact any healthcare professionals already involved in Matthew’s care. • Ask to speak to the learning disabilities liaison nurse/safeguarding lead nurse. • Contact an advocacy service for help. • Make a formal complaint and ask for a follow-up learning event to be held (this wouldn’t help at the time but could prevent reoccurrence). All involved would be able to learn from the situation, what went well and what didn’t go well. • Bear in mind that if sedation or general anaesthetic is required, ask for any interventions Matthew might find difficult (e.g. taking blood) to be done at the same time. The acute liaison nurse or community learning disability nurse can help with planning this.

5.6

Our Four-Step Plan

When supporting a person who has a learning disability it is often the carer’s responsibility to make health appointments and support the person to attend preventative, planned and emergency healthcare. This can be difficult, as seen in Matthew’s story. Mo, Jonathon and Gwen, as authors of this chapter, have developed a four-step plan for support staff helping people with learning disabilities to access healthcare.

5.6.1 Step 1: Talking About Health All people make unwise decisions about their health sometimes. Even fully informed people may still make unhealthy choices. For families and carers this can be difficult to accept. You can help by supporting people with learning disabilities to access accurate information about health and maintaining good health in a variety of formats (e.g. easy read information, videos or stories). You could also support the person to attend a health focused group, e.g. a healthy eating club, or exercise group. It’s important to recognise that if people are anxious or have had previous poor experiences, this may stop them accessing the healthcare they need. There is a range of strategies to help prepare people, e.g. talking about what to expect, visiting health services at quiet times, meeting health staff in advance, and role playing potentially worrying situations and experiences.

5.6.2 Step 2: Taking a Person-Centred Approach A person-centred approach when supporting someone to access healthcare will help you meet their health needs by focusing on the things they want and what they think

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is important. Carers usually know a lot about what a person likes and dislikes, what they fear, and their responses to pain or situations they find anxiety-provoking. The better we know someone, the better able we are to recognise health changes, intervene appropriately and seek help when needed. Involve the person and those who know them well in developing or updating their healthcare passport to ensure that important information is included.

5.6.3 S  tep 3: Sharing Appropriate Information with Health Professionals Communicating well with others involved in a person’s healthcare is essential, and the appropriate sharing of information is key to this. Ensure that the person is provided with information about, and encouraged to attend, their Learning Disabilities Annual Health Check where key information can be shared and updated with the GP. You could ask the GP for information about the reasonable adjustments required for the person to access healthcare to be included in their Summary Health Record. For all health appointments, if needed, ensure that someone who knows the person well goes with them to provide support. Ensure that they are prepared, have thought in advance about what they may be asked and taken any necessary paperwork with them. If appropriate, you could send or give any relevant information in advance. You might find it helpful to phone ahead and explain what the person needs, for example, if someone can’t wait in a crowded space, warning a clinic of this in advance should enable alternative arrangements to be made. If you think that a health professional is not responding appropriately to the person, for example, they are not looking into a health problem because they think the way the person is relates to their learning disability and not a possible illness or injury, don’t be afraid to challenge this. You could advise health staff on the reasonable adjustments that you make to help them to understand how best to support the person to be able to access appropriate healthcare.

5.6.4 Step 4: Getting Specialist Help and Support if You Need It As we saw from Matthew’s example above, there are times when we need to get specialist help and support for people with learning disabilities to be able to access healthcare. You should not hesitate to do so when required. You could contact a family member or paid carer who is expert in their knowledge of the person and what might work best for them. You could also contact your local community learning disabilities team who will have a range of health professionals with expertise in supporting people with learning disabilities to access healthcare. If the person is already in hospital, contact the hospital learning disabilities liaison nurse if there is one. You may need to be assertive but not confrontational when requesting specialist help. Provide as much information as you can, being careful of your own assumptions,

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e.g. a long waiting time might be because health staff are seeking the best solutions. Request a capacity assessment (see Chap. 3) and an independent advocate if appropriate.

5.7

Summary and Conclusions

This chapter has considered some of the challenges that people with learning disabilities may face in accessing preventative, planned and emergency healthcare. There is, however, much that support workers can do to help people with this. In Chap. 1 we considered the importance of knowing the person well and ensuring that they receive the right support at the right time. This is particularly important when helping people to access healthcare. We also need to be clear about the reasonable adjustments that a person may need, and to work in partnership with the person themselves and others to ensure that their health needs are met. Good access to healthcare is often the key to achieving good health outcomes. By developing confidence to speak out, challenge and advocate for people with learning disabilities, support workers can make a significant difference to a person’s well-being.

Reflective Space

Before moving on to the next chapter, think about what you have learnt in this chapter and how it relates to your work supporting people with learning disabilities. We all face problems accessing healthcare sometimes, but our role as supporters of people with learning disabilities is to ensure that they are not disadvantaged in doing so. How could the four-step plan and the top tips be helpful to you? Think of an example where this would have made a difference to how someone you support was able to access healthcare. What will you do now to improve access to healthcare for the people you support? Sources of Additional Information About the NHS Kings Fund. How the NHS works https://youtu.be/DEARD4I3xtE Advocacy BILD Factsheet about advocacy. See: http://www.bild.org.uk/resources/ factsheets/ MIND. Advocacy in mental health. See: https://www.mind.org.uk/informationsupport/guides-to-support-and-services/advocacy/#.XfzV3W52vg8 Promoting access to healthcare

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NHS Quality Improvement Scotland. Best Practice Statement—February 2006 Promoting access to healthcare for people with a learning disability—a guide for frontline NHS staff. See: https://www.jpaget.nhs.uk/media/186386/promoting_ access_to_healtcare_for_people_with_learning_disabilities_a_guide_for_frontline_staff.pdf https://www.ndti.org.uk/uploads/files/Social_care_guidance_final_revised.pdf Public Health England guides on how reasonable adjustments should be made to help people with learning disabilities to access services. https://www.gov.uk/government/collections/reasonable-adjustments-for-people-with-a-learning-disability Public Health England (2016) Guidance: Reasonable adjustments: a legal duty. Available at https://www.gov.uk/government/publications/reasonable-adjustmentsa-legal-duty/reasonable-adjustments-a-legal-duty Public Health England. Working together 2: Easy steps to improve support for people with learning disabilities in hospital. Guidance for hospitals, families and paid support staff. See: https://webarchive.nationalarchives.gov.uk/20160704150213/ h t t p : / / w w w. i m p r o v i n g h e a l t h a n d l iv e s . o rg . u k / p u b l i c a t i o n s / 1 2 4 7 / Working_together_2:_Easy_steps_to_improve_support_for_people_with_learning_disabilities_in_hospital Accessing preventative healthcare Anticipatory Care Calendar. See: http://www.qualityincare.org/oncology/case_ studies/development_and_implementation_of_an_anticipatory_care_calendar_ for_people_with_learning_disabilities_or_dementia NHS England Communications toolkit to aid increased awareness and understanding of the GP learning disability register, Annual Health Checks, Health Action Plans and Summary Care Records. See: https://www.england.nhs.uk/south/wp-content/uploads/sites/6/2017/03/Communications-Toolkit-Dont-Miss-Out.pdf NICE Quality Standard. Learning disability: care and support of people growing older. Annual Health Checks. See: https://www.nice.org.uk/guidance/qs187/chapter/Quality-statement-4-Annual-health-check Public Health England. Easy read information about flu and flu vaccination. See: https://www.gov.uk/government/publications/flu-leaflet-for-people-with-learningdisability Royal College of General Practitioners. Health checks for people with learning disabilities toolkit. https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/health-check-toolkit.aspx Royal College of General Practitioners. Example of a Health Action Plan. See: https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/-/media/623D 6C827D0044AB88BD0815A7B2436E.ashx Summary Care Records. See https://digital.nhs.uk/services/summary-carerecords-scr Accessing planned care Example of healthcare passport from East Kent Hospitals University NHS Trust. See: https://www.england.nhs.uk/6cs/wp-content/uploads/sites/25/2015/03/healthcare-passport.pdf Mencap provides lots of useful information including information on hospital passports, see: https://www.mencap.org.uk/advice-and-support/health/health-guides

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NHS England provides useful information to help with going into hospital. See: https://www.nhs.uk/conditions/learning-disabilities/going-into-hospital/ NDTi has published a guide to improve support for people in hospital and how to work together better. See: https://www.ndti.org.uk/resources/useful-tools/workingtogether-2-easy-steps-to-improve-support-for-people-with-learning-d Accessing emergency care Message in a Bottle. See https://carers.org/article/message-bottle NHS Improvement. SBAR communication tool—situation, background, assessment, recommendation. See https://improvement.nhs.uk/documents/2162/sbar-communication-tool.pdf

References Ali A, Scior K, Ratti V, Strydom A, King M, et al. Discrimination and other barriers to accessing health care: perspectives of patients with mild and moderate intellectual disability and their carers. PLoS One. 2013;8(8):e70855. https://doi.org/10.1371/journal.pone.0070855. Brown M, Chouliara Z, MacArthur J, McKechanie A, Mack S, Hayes M, Fletcher J. The perspectives of stakeholders of intellectual disability liaison nurses: a model of compassionate, person-­ centred care. J Clin Nurs. 2016;25(7–8):972–82. Carey IM, Hosking FJ, Harris T, DeWilde S, Beighton C, Shah SM, et al. Do health checks for adults with intellectual disability reduce emergency hospital admissions? Evaluation of a natural experiment. J Epidemiol Community Health. 2017;71:52–8. Castles A, Bailey C, Gates B.  Experiences of the implementation of a learning disability nursing liaison service within an acute hospital setting: a service evaluation. Br J Learn Disabil. 2014;42(4):272–81. Equality Act. London: The Stationery Office. 2010. https://www.legislation.gov.uk/ukpga/2010/15/ contents/data.pdf. Accessed 19 Dec 2019. Glover G, Evison F. Hospital admissions that should not happen. Admissions for ambulatory care sensitive conditions for people with learning disability in England. 2013. https://www.ndti. org.uk/uploads/files/IHAL-2013-02_Hospital_admissions_that_should_not_happen_ii.pdf. Accessed 19 Dec 2019. Hemm C, Dagnan D, Meyer TD. Identifying training needs for mainstream healthcare professionals, to prepare them for working with individuals with intellectual disabilities: a systematic review. J Appl Res Intellect Disabil. 2015;28:98–110. Heslop P, Blair P, Fleming P, Hoghton M, Marriott A, Russ L. The Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD). 2013. http://www.bristol.ac.uk/ media-library/sites/cipold/migrated/documents/fullfinalreport.pdf. Accessed 18 Dec 2019. Heslop P, Turner S, Read S, Tucker J, Seaton S, Evans B. Implementing reasonable adjustments for disabled people in healthcare services. Nurs Stand. 2019;34(8):29–34. Kelly CL, Thomson K, Wagner AP, Waters JP, Thompson A, Jones S, et al. Investigating the widely held belief that men and women with learning disabilities receive poor quality healthcare when admitted to hospital: a single-site study of 30-day readmission rates. J Intellect Disabil Res. 2015;59:835–44. MacArthur J, Brown M, McKechanie A, Mack S, Hayes M, Fletcher J. Making reasonable and achievable adjustments: the contributions of learning disability liaison nurses in 'Getting it right' for people with learning disabilities receiving general hospitals care. J Adv Nurs. 2015;71(7):1552–63. Mazars. Independent review of deaths of people with a Learning Disability or Mental Health problem in contact with Southern Health NHS Foundation Trust April 2011 to March 2015.

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2015. https://www.england.nhs.uk/south/wp-content/uploads/sites/6/2015/12/mazars-rep.pdf. Accessed 18 Dec 2019. Parliamentary and Health Service Ombudsman. Six lives: the provision of public services to people with learning disabilities. 2009. https://assets.publishing.service.gov.uk/government/ uploads/system/uploads/attachment_data/file/250750/0203.pdf. Accessed 18 Dec 2019. Pelleboer-Gunnink HA, Van Oorsouw WMWJ, Van Weeghel J, Embregts PJCM.  Mainstream health professionals’ stigmatising attitudes towards people with intellectual disabilities: a systematic review. J Intellect Disabil Res. 2017;61(5):411–34. Public Health England. Flu vaccinations: supporting people with learning disabilities. 2018. https://www.gov.uk/government/publications/flu-vaccinations-for-people-with-learning-disabilities/flu-vaccinations-supporting-people-with-learning-disabilities. Accessed 19 Dec 2019. Robertson J, Roberts H, Emerson E, Turner S, Greig R.  The impact of health checks for people with intellectual disabilities: a systematic review of evidence. J Intellect Disabil Res. 2011;55:1009–19. Steventon A, Deeny S, Friebel R, Gardner T, Thorlby R.  Emergency hospital admissions in England. Which may be avoidable and how? London: The Health Foundation; 2018. https:// www.health.org.uk/publications/emergency-hospital-admissions-in-england-which-may-beavoidable-and-how. Accessed 19 Dec 2019 Tuffrey-Wijne I, Giatras N, Goulding L, Abraham L, Butler G, Adeline P. Identifying the factors affecting the implementation of strategies to promote a safer environment for patients with learning disabilities in NHS hospitals: a mixed-methods study. NIHR Journals Library: Health Services and Delivery Research, No. 1.13. Chapter 9. The role of the learning disability liaison nurse. 2013. https://www.ncbi.nlm.nih.gov/books/NBK259497/. Accessed 18 Dec 2019.

6

Providing Holistic Care Daniel Marsden and Susan Cooper

6.1

Overview

This chapter focuses on the need to understand and coordinate holistic care with people who may have multiple health conditions, the challenges this can pose to a sometimes fragmented healthcare system and the particular preparation you will likely need to make for a person with learning disabilities. It starts with the authors’ reflections of providing or receiving holistic care. We then outline a model for describing how we might contribute and facilitate the provision of holistic care and support for people with long-term and multiple healthcare conditions, the House of Care, and how the model can be applied to people with learning disabilities.

6.2

Initial Reflections

A coordinated care project that Daniel was running (see Marsden and Bridgeman 2004) was initiated by the concerns of families about the number of hospital admissions being experienced by a group of people that attended a social care service. The project introduced holistic health check meetings with families, health and social care providers, and the person themselves wherever possible. They identified numerous people living with multiple health conditions, requiring proactive, reactive and sometimes urgent care interventions. Many of the people needed information to be shared across different professional groups. In one case, a speech therapist working with a hospital gastroenterologist to plan the insertion of a percutaneous endoscopic gastrostomy (PEG) tube into the stomach of a person discovered that the occupational D. Marsden (*) · S. Cooper Faculty of Health, Social Care and Education, Kingston and St. George’s University of London, London, UK e-mail: [email protected] © Springer Nature Switzerland AG 2020 P. Heslop, C. Hebron (eds.), Promoting the Health and Well-Being of People with Learning Disabilities, https://doi.org/10.1007/978-3-030-43488-5_6

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therapist was arranging for a new moulded wheelchair for the person, but the person’s position could make the PEG tube inaccessible while they were using the wheelchair. Exercise 6.1 Self-Reflection

Create a map or diagram of the people and services in your life. How do these interact and work together to make sure that you remain healthy?

6.3

Key Concepts

6.3.1 Holistic Care Holism was first posed as a philosophical position by Smuts in 1926; our current understanding of holism focuses on intimate inter-connection and inter-­dependability of systems and people, and the idea of the whole being greater than the sum of its parts. In the context of health, holism considers the many and various internal and external systems and the interactions that constitute health and well-being. At the turn of the century, Benner (2001) reflected on the changing face of healthcare, acknowledging that there was an increasing number of people requiring support for long-term and multiple health conditions. These conditions increase the number and complexity of choices as to their care and treatment, and the number of professionals that may be involved. Aligned with this, health professionals were encouraged to consider the implications of stress associated with these health conditions and the impact on recovery. A new perspective was proposed which supported people with long-term health conditions to manage their own health and where possible to become experts in it (Department of Health 2004). McCormack and McCance (2017) observe that caring and supporting a person holistically is integral to person-centred care. This entails focusing equally on the physical, psychological, social, cultural and spiritual elements of the person. It is a dynamic process of rapport and relationship-building between a clinically competent professional and the person with health issues. As such, a broad perspective on physical health is required for communicating effectively with the person and for considering the wider implications of a healthy lifestyle. It can lead to an empowering approach to actions to be taken and for maintaining any behaviour change. While holistic care is not different for people with learning disabilities, we may need to consider what adjustments are required for it to be successful.

6.3.2 Multimorbidity In the UK, the National Institute of Health and Care Excellence guidance (NICE 2016) defines ‘multimorbidity’ as two or more long-term conditions that could

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include physical or mental health diagnoses, learning disabilities, frailty, sensory impairments and/or substance misuse. Evidence advises of the increasing number of people living with multimorbidity, suggesting this is fast becoming the norm rather than exception (NICE 2016). Multimorbidity can have a profound impact on someone’s quality of life (Fortin et al. 2004), their admissions to hospital (Payne et al. 2013) and their life expectancy (Nunes et al. 2016). Work undertaken at the University of Bristol (Heslop et al. 2013; University of Bristol 2018, 2019) relating to mortality offers some insight into the lives of people with learning disabilities who experienced multimorbidity. The 2013 study of 247 deaths of people with learning disabilities reported that people with learning disabilities were likely to die 15–20 years earlier than those in the general population and the majority had three or more long-term conditions, including epilepsy, cardiovascular disease, hypertension, arthritis, dementia, hypothyroidism and/or osteoporosis, along with treatable medical conditions such as constipation, pressure sores, gastro-oesophageal reflux and/or pneumonia.

6.3.3 Care Coordination Care coordination is the intentional arrangements of care between two or more parties, including the person themselves (McDonald et al. 2014). Vargas et al. (2015) identify that this can be arranged on several levels via policy at a national level, between local healthcare organisations and between healthcare professionals and the person. Traditionally, much of the coordination responsibilities fell to the person’s General Practitioner (GP), but policy and guidance is encouraging a new direction with Lead Clinical Coordinator and Health Navigator roles to ensure those with the most appropriate healthcare experience are explicitly identified to oversee and support clinical decision-making with individuals (Academy of Medical Royal Colleges 2015). These developments provide significant opportunities for people with learning disabilities. For instance, Susan’s brother, Steven could be accompanied to his appointments by a Lead Clinical Coordinator or Health Navigator, in doing so they could share Steven’s relevant health information, and facilitate the relationship and discussion with other healthcare professionals and his family enabling all to understand how Steven appears when he is unwell.

6.3.4 Partnership Working Partnership working is based on relationships between professionals and the person using a service, agreed ways of working together and a common purpose that enables shared decision-making and participation (Baillie 2016). Smith et al. (2015) observe that some people—including people with learning disabilities—will require extra support with these activities, and as such the development of relationships with the person’s family and care workers might be required to maintain the person’s health and well-being as the central concern. In some circumstances it could

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be necessary to engage advocates to support this process either through short-term or longer-term relationships with the person.

6.4

 Framework for Improving Care and Support A for People with Long-Term and Multiple Healthcare Conditions: The House of Care

The House of Care model (Coulter et al. 2013) provides a framework for improving care and support for people with long-term and multiple healthcare conditions and with some adjustments is applicable to people with learning disabilities. It acknowledges that healthcare has been successful at increasing life expectancy and treating illness, but that current healthcare systems tend to focus on individual health problems whereas increasingly, more people are experiencing multiple long-term health problems. Figure 6.1 is an adapted form of the House of Care model. Contained inside the House of care are the elements of holistic care—relating to the individual and their support networks, and how these can be harnessed in a caring and supportive relationship with a healthcare professional. The foundations, walls and roof of the House of Care are the parts of the system that can support holistic, coordinated care to happen effectively. Here we will look at the different elements of the House of Care Framework.

Organisational and supporting processes

Holis t

C ic

o

Person

k or w

– Suppo rt n care tic et il s i d v o are In idual d s ain m

Engaged, informed individuals and carers

H

Holistic Coordinated Care Relationship

Commissioning – purchasing the right services

Fig. 6.1  Adapted version of House of Care (Coulter et al. 2013)

Health and care professionals committed to partnership working

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6.4.1 The Centre of the House of Care At the centre of the House of Care is the person. Chapter 1 introduced the two key factors that help us to establish and maintain the building blocks for health and happiness. The first is the importance of knowing the person well, and the second is the provision of the right care at the right time. Encompassing the person are the individual domains we need to consider when providing holistic care. These are:

6.4.1.1 Physical Being An awareness of the person’s medical history, the conditions they are currently being treated for, and those that someone of their age, culture and lifestyle choices could be prone to are significant in building a relationship necessary to enabling the person to manage independently. 6.4.1.2 Emotional and Psychological Being Mental well-being is of significance in empowering a person and enabling them to make independent choices. Enabling people to make sense of and manage their thoughts and feelings includes education, recognising the early warning signs of illness and developing coping skills for persistent issues (Mueser et al. 2002). 6.4.1.3 Spiritual Being Our spiritual well-being is deeply personal, and context driven (McEvoy and Duffy 2008). To some, quality of life can be based on traditional religious, cultural beliefs and community customs, while for others spiritual care can be achieved through being present and attentive to the individual’s wants and needs in the context of their long-term aspirations. 6.4.1.4 Self-Awareness To be able to offer holistic care and support, we need to be aware of our own ‘whole’ as well as that of the other person. Self-awareness and reflection are important skills for us to manage our own thoughts and feelings and focus on the provision of holistic care. Exercise 6.2 Supporting People with Learning Disabilities

On a piece of paper write freely about your physical, emotional/psychological and spiritual being, what support you might have had in the past with these, what worked, what felt right and what didn’t. Now consider the people you are supporting. Do you have any concerns about supporting a person holistically? Are there elements with which you would feel more comfortable? How do you know what works best for them?

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Surrounding the individual in the House of Care is their support network. This can be provided by a range of different people or services, and we need to consider how they work together when providing holistic care. A person’s support network might include the following.

6.4.1.5 Family and Friends Family and friends usually have considerable knowledge and awareness of a person. They may be the people who either encourage the person to seek their own support or who request support for the person themselves. Their observations and assessments of how the person appears to be is almost always a valuable indicator of the person’s health, although it is not always expressed in medical language. 6.4.1.6 Social Care Support Social care staff have a significant role in supporting people to identify long-term aspirations and in maintaining daily activities. Developing a person-centred plan with the individual, close family and friends and health and social care professionals as necessary, is an important activity to gain a shared purpose, enabling everyone to contribute. A PATH tool (O’Brien and Pearpoint 2010) can support the process of developing a clear plan of action and can then provide a framework to monitor changes in behaviour which could indicate a change in health. 6.4.1.7 Primary Care Support Primary care professionals are encouraged to identify and tailor care for people with complicated multimorbidity, assigning a named clinician wherever possible and running clinics for people with common clusters of long-term health conditions (Wallace et al. 2015). These types of initiatives are designed to support continuity and the management of multiple treatments including medications, while promoting shared decision-making by drawing on the reflections and expertise the individual has through their own experience. Clinics such as these can also be an opportunity to refer to local community services, such as education, sports, and volunteering or arts related activities. Social prescribing recognises the wider influences on health and well-being, enabling primary care staff to signpost people to activities that might encourage greater fulfilment, which in turn may have positive impact on their holistic being and ultimately their health (Kings Fund 2017). For people with learning disabilities, initiatives such as these are dependent on collaborative and coordinated work across each of the communities around the individual (Marsden and Giles 2017). This requires a practical understanding of the legal frameworks for choice-making, including associated roles and responsibilities, an awareness of those significant in the individual’s life, which could include specialist learning disability health and social care professionals, and for someone to take the lead in facilitating a plan of achievable actions. For more about decision-­ making see Chap. 3.

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Steven and Susan’s Story

Susan had heard from Steven’s support workers that he had not been his usual chatty self; care workers interpreted his quiet and languid demeanour as due to having a busy day, but also noted he was less enthusiastic about his favourite foods. On visiting, Susan initially found Steven to be watching TV with his head resting on his hand. On closer inspection, Susan could see Steven’s fingers were in his mouth, beyond the knuckle and he was clinging to his jaw. On sitting next to him, he leant into Susan and he let her stroke his head, which wasn’t usual—and he stared at her with what ‘felt like desperation’ according to Susan. Susan questioned whether Steven was in pain, and a test dose of an overthe-­counter painkiller improved how Steven appeared to be. GP and dental appointments were arranged, and regular painkillers were prescribed until the dentist could assess and treat Steven. How Steven had demonstrated pain was then recorded in his care plan at the care service and in the GP records for future reference.

6.4.2 The Walls of the House of Care There are two ‘walls’ to the House of Care. The first is the input of engaged, informed individuals and carers who act as advocates for the person requiring holistic care. The second is the availability of health and care professionals committed to partnership working.

6.4.2.1 Engaged, Informed Individuals and Carers Who Act as Advocates Healthcare is increasingly concerned with enabling people to take a greater control of their health and care, including people with learning disabilities. In some parts of the UK there are professionals whose sole responsibility is to support people to navigate the health and care systems. Health Navigators (Academy of Medical Royal Colleges, 2015), where available, can be accessed in a variety of ways, including primary care and hospitals, via specialist learning disability multidisciplinary teams, or through independent advocacy. They can provide effective practical and social support, enhancing the person’s experiences, reducing admissions to hospital, and promoting independence. In places where specialist learning disability care navigators are available, they tend to support people to learn new skills, discuss worries and concerns and develop supportive social networks to aid interdependence. 6.4.2.2 The Availability of Health and Care Professionals Committed to Partnership Working The second of the ‘walls’ of the House of Care is the availability of health and care professionals committed to partnership working.

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With the internet, health and care information is readily available, some of which is accessible and understandable to all. It could therefore be assumed that people are better informed about their health, and there is a growing recognition of the central role that people play in managing their own health based on this information. As such, Coulter et al. (2013) observe that professionals are turning to problem-solving and coaching skills to develop trustful, mutual relationships, consensus building, managing risk and ultimately encouraging healthy lifestyle choices. For people with learning disabilities, these skills may need to be adapted and applied in different contexts and circumstances. Establishing the person’s understanding and capacity to make decisions (see Chap. 3) may require the skills of a specialist learning disability professional. The person may also benefit from having a learning disability professional to facilitate their access to healthcare and to coordinate their care. This is particularly important at transitions and hand-over times, such as the move from children’s to adults’ services, and admission and discharge from hospital care. James’s Story

James—an 18-year-old autistic man with learning disabilities and unstable diabetes—had recently moved from children’s to adults’ diabetes services. James wished to manage his diabetes and clinic appointments more independently, causing concern for his parents due to the risks involved. A referral for a Community Learning Disability Nurse was made to support James to manage his diabetes independently, facilitate working relationships with the diabetic services, and support the familial relationship at home. Through this process it became clear that James was also socially isolated and struggled to maintain relationships. The community nurse and James developed a rapport, they went to diabetes appointments together, where James was advised to adhere to a specific diet and increase his level of exercise. The community nurse sought out information about various social sports activities; James chose to go to football training twice a week and was chosen to play in a team in the local disability league. In this example, James was keen to manage his own health, and under the Mental Capacity Act (see Chap. 3) would be assumed to have capacity to make his own choices. The community nurse took the navigator’s role in James’ care, developing a partnership with James, his family and the diabetic services to enable James to maintain his own health, and also sourced the football club that has empowered James to become fitter, healthier and more confident as a young adult.

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6.4.3 T  he ‘Roof’ of the House of Care: Organisational and Supporting Processes The ‘roof’ of the House of Care is formed by strong organisational and supporting processes for the provision of holistic care. These include processes for sharing information safely, identifying those who may require ‘reasonable adjustments’ (see Chap. 5) made to their care, or recording significant information about a person that others involved in their care can access. Information sharing is significant in the management of health and care, but it can often be restricted to ensure safety and security aligned with General Data Protection Regulations (NHS Digital 2018). Innovative online and information technology systems are being developed to ensure that the right information is shared with the right people at the right times, for example, the NHS is developing a ‘flag’ or marker to be placed on the Summary Care Record of a person, indicating that they may require ‘reasonable adjustments’ to their care (NHS Digital 2019). The Summary Care Record is an electronic record of a small amount of important health information about an individual that is available across the whole of the NHS; people can request additional information to be shared if appropriate. The statutory requirement for service providers to make ‘reasonable adjustments’ under the Equality Act 2010 is explained in Chap. 5 and these digital systems can enable the delivery of personalised information securely and swiftly (Marsden and Treston 2018). It can also facilitate links with other care workers and family members at short notice should this be required.

6.4.4 The ‘Foundation’ of the House of Care: Commissioning The foundation of the House of Care is the commissioning process, the purchasing of appropriate services that work in conjunction to provide holistic care for an individual. Purchasing care and support services for an individual provides an opportunity to evaluate what is in place with a view to the future (Coulter et  al. 2013). Commissioners are required to consider whole populations, which might range from those with multiple long-term conditions who are frequently unwell to those that require less intervention but close monitoring and support to live as independently as possible. As such, commissioning will include paying attention to information sharing systems, the availability of health professionals able to work in partnership and help an individual navigate healthcare systems, and the provision of innovative community services able to provide support to those with specific needs, such as healthy cookery classes, gardening groups, or social sports services. Commissioning services that work collaboratively and holistically with a person are dependent on the development of a clear vision, and utilising the people and

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services in that area; for this it is advantageous to develop networks and relationships across health, care, education and research to support holistic care delivery. For more individualised care and support, direct payment or personal health budgets can enable people to have greater power to purchase services not available elsewhere. These can be accessed via a local council (for social care) or NHS Continuing Care team (for healthcare). This enables the person or those supporting them to identify and commission their own health or care services as required, with local health or care services supporting this through monitoring the effectiveness of the care and facilitating the payments. The Anticipatory Care Calendar Project

The Anticipatory Care Calendar project (Marsden 2018) was funded by commissioners to test out the use of an innovative, electronic, free-to-use tool to enable care staff to recognise and respond to changes in the health of the people they support, and to ensure that changes in a person’s health are reported to their GP at an early stage. The framework of the Anticipatory Care Calendar covers 12 domains of health including, amongst others, pain, behaviour, mobility, sleep, sepsis, eating and drinking. A Learning Disability Matron led the project, engaging local services as partners to test the systems. While this project found the infrastructure was unprepared to support implementation in practice, one service provider has applied the tool in their personalised care planning process, identifying it as useful to record a person’s baseline health information and record and monitor changes.

6.5

 upporting the Provision of Holistic Care for People S with Learning Disabilities

Exploring the individual’s wants and needs with the person, their family and support services using a person-centred planning process is important in gaining a shared purpose, and progressive set of actions. Any adjustments required for communication (Marsden and Giles 2017) and how we interpret an individual’s appearance and behaviour are important in excluding any potential physical health causes. Support workers have a valuable role to play in knowing how to engage the individual in choice making, so that health and social care professionals who are less familiar with the individual can be assured of taking appropriate actions. Support workers could also bring engaging pastimes to healthcare settings, to support the person to remain positive, and absorbed in activities while waiting for healthcare appointments. It is useful for support workers to be aware of the complexity of healthcare services and to identify people that could help with navigating this. Positive working relationships with the local primary care service and the community learning

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disability team could aid this process. Support workers may also find it helpful to have knowledge of specific health conditions and their treatments for those they support. There are reliable online resources produced by the NHS that can help with this. Finally, reflective practice is important for all in a caring role, in order to develop our own skills and knowledge, to be able to articulate and advocate for those we support, and influence in the future.

6.6

Summary and Conclusions

This chapter has sought to define and give examples of holistic care in the context of the individual, their family and friends and the services they might access and how these are designed. In particular, people with learning disabilities are more likely to experience multimorbidity and are more vulnerable than others to care that is not collaborative or coordinated. Building a relationship based on the individual’s strengths and motivation to be healthy and live a fulfilling life is an important starting point. Establishing plans or care with the individual and those around them is vital to gain a shared purpose, while acknowledging both the opportunities and challenges with supporting and facilitating care across the complexity of the health, care and community systems. The House of Care model provides a contemporary perspective on health and care systems, the push for working together across organisational boundaries and ensuring that professionals have the right information at the right times in order to provide holistic care. These are important elements in supporting people to live healthy, safe and fulfilled lives.

Reflective Space

Consider a recent experience of supporting someone with multimorbidity to access health services. What was their experience of joined up holistic healthcare? How can the House of Care model help you think about the different elements needed for the provision of holistic care? Sources of Additional Information  Kings Fund. What is social prescribing? https://www.kingsfund.org.uk/publications/social-prescribing NHS How to access your health records. https://www.nhs.uk/using-the-nhs/ about-the-nhs/how-to-access-your-health-records/ NHS Long-term conditions scenarios and other Rightcare resources. https:// www.england.nhs.uk/rightcare/products/ltc/

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Future Learn. Supporting people living with long-term conditions. https://www. futurelearn.com/courses/supporting-long-term-conditions Future Learn. Improving health assessments for people with an intellectual disability. https://www.futurelearn.com/courses/health-assessment The Open University. Learning through reflective practice. https://www.open. edu/openlearncreate/course/view.php?id=2159

References Academy of Medical Royal Colleges. Coordinating care: in primary, community and outpatients settings. London: Academy of Medical Royal Colleges; 2015. https://www.aomrc.org.uk/ wp-content/uploads/2016/05/Coordinating_care_pcos_1015.pdf. Accessed 10 Nov 2019. Baillie L. Working in partnership with patients and carers. Nurs Stand. 2016;31(15):42–5. Benner P.  From novice to expert. Excellence and power in clinical nursing practice. London: Prentice Hall; 2001. Coulter A, Roberts S, Dixon A. Delivering better services for people with long-term conditions: building the house of care. London: The King’s Fund; 2013. https://www.kingsfund.org.uk/ sites/default/files/field/field_publication_file/delivering-better-services-for-people-with-longterm-conditions.pdf. Accessed 16 Dec 2019 Department of Health. Chronic disease management—a compendium of information. London: Department of Health; 2004. Fortin M, Lapointe L, Hudon C, Vanasse A, Ntetu AL, Maltais D. Multimorbidity and quality of life in primary care: a systematic review. Health Qual Life Outcomes. 2004;2:51. https://doi. org/10.1186/1477-7525-2-51. Heslop P, Blair P, Fleming P, Hoghton M, Marriott A, Russ L. The confidential inquiry into premature deaths of people with learning disabilities (CIPOLD) Final report. Bristol: University of Bristol; 2013. http://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf. Accessed 16 Dec 2019 Kings Fund. What is social prescribing? 2017. https://www.kingsfund.org.uk/publications/socialprescribing. Accessed 10 Nov 2019. Marsden D, Bridgeman L. Health matters: an evaluation of health action planning pilot at enhancedcare unit. Journal of the Association of Practitioners in Learning Disabilities. 2004;21(2):12–6. Marsden D, Giles R. The 4C framework for making reasonable adjustments for people with learning disabilities. Nurs Stand. 2017;31(21):45–53. Marsden D, Treston R. Reasonable adjustments workshop evaluation report. 2018. https://www. ekhuft.nhs.uk/patients-and-visitors/about-us/people-with-learning-disabilities/hekss-reasonable-adjustments/. Accessed 10 Nov 2019. Marsden S.  Anticipatory care calendar validation report. 2018. https://www.kentcht.nhs.uk/ wp-content/uploads/2019/01/Anticipatory-care-calendar-validation-report.pdf. Accessed 10 Nov 2019. McCormack B, McCance T. The person-centred practice framework. In: McCormack B, McCance T, editors. Person centred practice in nursing and healthcare. Oxford: Wiley Blackwell; 2017. McDonald K, Schultz E, Albin L, Pineda N, Lonhart J, Sundaram V et al. Care coordination measures atlas. AHRQ publication no. 14-0037-EF. 2014. https://www.ahrq.gov/sites/default/files/ publications/files/ccm_atlas.pdf. Accessed 10 Nov 2019. McEvoy L, Duffy A. Holistic practice—a concept analysis. Nurse Educ Pract. 2008;8:412–9. Mueser KT, Corrigan PW, Hilton DW, Tanzman B, Schaub A, Gingerich S, et al. Illness management and recovery: a review of the research. Psychiatr Serv. 2002;53:1272–84. NHS Digital. General data protection regulation (GDPR) guidance. 2018. https://digital.nhs.uk/ data-and-information/looking-after-information/data-security-and-information-governance/

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information-governance-alliance-iga/general-data-protection-regulation-gdpr-guidance. Accessed 16 Aug 2019. NHS Digital. Helping doctors and nurses to improve care for patients with a learning disability. 2019. https://digital.nhs.uk/news-and-events/latest-news/reasonable-adjustments-flagging. Accessed 16 Aug 2019. NICE. Multimorbidity: clinical assessment and management. NG56. London: NICE; 2016. Nunes BP, Flores TR, Mielke GI, Thumé E, Facchini LA. Multimorbidity and mortality in older adults: a systematic review and meta-analysis. Arch Gerontol Geriatr. 2016;67:130–8. O’Brien J, Pearpoint J. The PATH & MAPS handbook. Person-centred ways to build community. Toronto: Inclusion Press; 2010. Payne RA, Abel GA, Guthrie B, Mercer SW. The effect of physical multimorbidity, mental health conditions and socioeconomic deprivation on unplanned admissions to hospital: a retrospective cohort study. Can Med Assoc J. 2013;185(5):E221–8. https://doi.org/10.1503/cmaj. Smith J, Swallow V, Coyne I.  Involving parents in managing their child's long-term condition—a concept synthesis of family-centered care and partnership-in-care. J Pediatr Nurs. 2015;30:143–59. Smuts J. Holism and evolution. New York: Macmillan; 1926. University of Bristol. Learning Disability Mortality Review (LeDeR) Programme Annual Report 2017. 2018. https://www.hqip.org.uk/wp-content/uploads/2018/05/LeDeR-annualreport-2016-2017-Final-6.pdf. Accessed 16 Aug 2019. University of Bristol. Learning Disability Mortality Review (LeDeR) Programme Annual Report 2018. 2019. http://www.bristol.ac.uk/media-library/sites/sps/leder/LeDeR_Annual_ Report_2018%20published%20May%202019.pdf. Accessed 16 Aug 2019. Vargas I, Mogollón-Pérez AS, De Paepe P, Silva MRF, Unger JP, Vázquez ML. Do existing mechanisms contribute to improvements in care coordination across levels of care in health services networks? Opinions of the health personnel in Colombia and Brazil. BMC Health Serv Res. 2015;15:213. https://doi.org/10.1186/s12913-015-0882-4. Wallace E, Salisbury C, Guthrie B, Lewis C, Fahey T, Smith S. Managing patients with multimorbidity in primary care. BMJ. 2015;350:h176. https://doi.org/10.1136/bmj.h176.

7

Medication Danielle Adams and Barry Jubraj

7.1

Overview

This chapter outlines some key concepts about the use of medication. The medicines process is outlined in detail together with examples of additional challenges that may be experienced by people with learning disabilities. Much of the chapter focuses on the concept of ‘medicines optimisation’—how people can be helped to get the most out of their medicines. It affirms how we all have a part to play in this so that those we support can achieve positive health outcomes.

7.2

Initial Reflections

Some medicines are prescribed, and other medicines can be obtained without a prescription. In order to ensure that medicines are being taken in a safe way and are working well for those you are supporting, we need to understand how medicines are used, how to get the best out of medicines, how to use medicines safely and how to access good-quality information about medicines. People with learning disabilities are more likely to experience poor health than the general population and therefore their use of medicines is often greater (Krahn et al. 2006; van Schrojenstein Lantman-de and Walsh 2008; Doan et al. 2013; Heslop et al. 2014). Using more medicines than many other people in the general population

D. Adams (*) Centre for Educational Development, Appraisal and Research (CEDAR), University of Warwick, Coventry, UK e-mail: [email protected] B. Jubraj Medicines Use & Safety Team, NHS Specialist Pharmacy Service, London, UK e-mail: [email protected] © Springer Nature Switzerland AG 2020 P. Heslop, C. Hebron (eds.), Promoting the Health and Well-Being of People with Learning Disabilities, https://doi.org/10.1007/978-3-030-43488-5_7

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can present challenges including understanding what the medicines are for, why they are needed and how to take them (Duerden et al. 2013). Guidelines for health and care professionals encourage effective communication with those they are supporting, stressing the importance of making decisions together, referred to as ‘shared decision-making’ (Coulter and Collins 2011; for more information about decision-making see Chap. 3). The understanding that a person might have about medicines can be influenced by the severity of their learning disability, conditions such as dyslexia and autistic spectrum disorders, or the availability of accessible information. The ‘Accessible Information Standard’ specifies the responsibility of health services to provide information that is accessible to people with learning disabilities (see Chap. 2 for more information). At the outset of this chapter, we would like you to look at Exercise 7.1. Think about all your own medicines, either prescribed or bought without a prescription, including those for your physical and mental health. Remember that not all medicines are pills and there are many different medicine forms available. If you do not currently take any medicines you may like to think about the medicines that your close friends, relatives or a partner take. You may wish to make a note of your thoughts when completing this exercise, as we will come back to them later in this chapter. Exercise 7.1 Self-Reflection

Thinking about the medicines you (or a close relative, friend or a partner) take, try and answer the following questions. • • • • • • • • • •

Do you know why you are taking them? What are your treatment goals? Do you know the best way to take your medicines? Do you experience difficulties in taking your medicines? Do you find it difficult to remember to take your medicines? Are you concerned that the medicines that you take are safe? Are you worried about side effects? Do you consider that the medicines are working? What information about your medicines is important to you? When buying medicines without a prescription how do you make sure they are right for you and that they will mix well with other medicines that you take? • Do you have opportunities to discuss the medicines you take with healthcare professionals? • Who would you contact to discuss the above issues?

Barry says: My son who has a severe learning disability also has complex medical problems including an unsafe swallow. We are unable to explain to him the need for his many medicines and it is draining to have to remember everything for him.

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We also have to try and find creative ways to safely administer his medicines and we have often sought the advice of a specialist paediatric pharmacist. One example of the challenge of having a child with a learning disability is how hard it can be to tell if they are in pain or have a fever. Our son can’t tell us, and we have to monitor him all the more closely – and then work out a way of safely administering his medicines with his swallowing difficulty.

7.3

Introduction to Key Concepts

7.3.1 Drugs and Medicines A drug is a chemical that is taken into the body and changes the way the body works. Examples are medicines, illegal drugs, caffeine, alcohol and nicotine. A medicine contains a drug in a specially prepared form to cure, prevent or treat the symptoms of an illness and/or to keep us well. Medicines are available in many forms: tablets, soluble tablets, melt in the mouth tablets, capsules, liquids, suppositories, patches, ear/eye/nose drops, creams, ointments, inhalers and injections. Sometimes healthcare professionals use the word ‘drug’ when they specifically mean ‘medicines’. The word ‘medication’ and ‘medicines’ mean the same thing.

7.3.2 ‘Generic’ and ‘Branded’ Medicines Most medicines have two names—one generic and one brand (proprietary) name. The brand name is created by the pharmaceutical company that manufactures the medicine whereas the generic name refers to the name of the active ingredient in the medicine. An example of a simple analogy could be the various washing powders that are available: non biological washing powder is the general (or generic) name for the substance whereas there are different brand names made by different manufacturers. If the prescription remains unchanged, then the generic medicine name will be the same each time a new supply of medicine is received. However, the medicine may be produced by a different manufacturer and so may have a different brand name and may look different. Importantly, for some medicines it is essential that the same brand is dispensed each time. If a specific brand of a medicine is not specified, the pharmacy will supply a generic version. This is entirely appropriate and is routine. However, this can be confusing for people due to the number of generic versions of the same medicine.

7.3.3 ‘Adherence’ to Treatment with Medicines Adherence relates to the extent that the person takes their medicine as prescribed by the healthcare professional. If a person does not take their medicine as prescribed, it

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is described as non-adherence. Non-adherence can be unintentional (e.g. intending to take the medicine but, for example, forgetting or being unable to physically take the medicine) or intentional (e.g. the person makes an active decision not to take the medicine because of their health beliefs or fears about treatment such as side effects). Healthcare professionals are often unaware that the medicines are not being taken as prescribed. We discuss this later in the chapter.

7.3.4 Polypharmacy Polypharmacy is when a person is taking several different medicines at the same time. Polypharmacy may be ‘appropriate’ if all the medicines have been considered in combination to provide overall benefit. In many cases, however, polypharmacy can be problematic, for example, because of the risk of side effects, interactions or the potential for non-adherence. Evidence suggests that polypharmacy may indeed increase the risks of side effects, poor adherence and reduced positive health outcomes (Duerden et al. 2013).

7.3.5 Licensed and Unlicensed Medicines A licensed medicine is a medicine that has authorisation for marketing from the UK Medicines & Healthcare Products Regulatory Agency (MHRA), enabling it to be prescribed in the UK. Medicines can only be granted a license following research and clinical trials. Sometimes a healthcare professional may recommend an ‘off-­label’ or unlicensed medicine. Off-label use means that the medicine is not licensed for treatment of the condition for which it has been prescribed, although it will have a license to treat another condition. Unlicensed medicines are usually only prescribed if there are no appropriate licensed or off-label alternatives to treat the condition effectively and the benefits are considered to be greater than any risks (NHS 2019).

7.3.6 The Legal Categorisation of Medicines There are three legal categories of medicines: • General Sales List (GSL): medicines that can be sold in any shop without a prescription, but advice about these medicines can only be obtained from pharmacists. • Pharmacy Only (P): medicines that are restricted to being sold under the supervision of a pharmacist. • Prescription only Medicine (POM): medicines that need to be prescribed by a General Practitioner (GP), Psychiatrist, Hospital doctor, Dentist or a non-­medical prescriber. A non-medical prescriber may be a pharmacist or a nurse or another healthcare professional who is specially trained and qualified to do so.

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Prescription only medicines are usually dispensed by pharmacists and pharmacy technicians at a community pharmacy (chemist), a hospital pharmacy or online pharmacies with delivery or postal services. Over-the-counter medicines (OTC) include both general sales list (GSL) medicines and pharmacy only medicines (P).

7.4

The Process of Using Medicines

Here we outline the stages involved in providing medicines to people and what happens after the medicines are taken or administered. The purpose of the medicines use process is to provide a framework for safe pharmaceutical care within the healthcare environment together with the aim of obtaining maximum benefit for the individual (Elliott et al. 2018).

7.4.1 Prescribing Prescribing is the recommendation and authorising of a specific medicine for a specific person by a prescriber, who does this by printing or writing out a prescription with an authorised signature or providing an electronic prescription to a pharmacy.

7.4.2 Clinical and Legal Checking of the Prescription Before a medicine can be provided to an individual, the prescription must be checked by a pharmacist to confirm that it is legal, clinically appropriate and safe for the person in terms of choice of medicine for the individual, choice of medicine for the condition that is being treated, dose of medicine, interactions, side effects, allergies and monitoring. A person’s kidney and liver function can affect the dose and choice of medicine for a particular condition. This is because medicines are typically foreign substances that the body will try to get rid of via these organs. Some medicines are changed to other chemicals by the liver before reaching the kidneys. People with reduced kidney or liver function may require lower doses of some medicines or alternative medicines to reduce the risk of the medicine building up in the body. This checking process, also called ‘screening’, is a recognised and accepted part of the medicines use process and improves safety in the use of medicines. Barry says: We were so grateful to the pharmacist when we presented our son’s prescription for a particular medicine. They looked at it and asked us if the dose was what we were expecting. It turned out that the prescriber had mistakenly prescribed too much and the prescription needed correcting. The pharmacist doesn’t just dispense medicines, they check it as well.

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7.4.3 Dispensing Dispensing is preparing and packaging a prescription medicine in a container and labelling the container with information as to how to take the medicine together with some additional warnings. This usually occurs in a pharmacy by pharmacy staff. Further information about the medicine can be found on the patient information leaflet supplied with each dispensed medicine.

7.4.4 C  onsultation with the Person Who Has Been Prescribed the Medicine Pharmacy staff should discuss the prescribed medicine with the individual, beginning by asking them about their questions and concerns. Barry says: Our son goes to an after-school club for children with learning disabilities which means they have to give him his medicines around supper time. Quite rightly they need us to send the medicines in a properly labelled container. If his medicines come in a pot and it gets tipped over, we have lost the whole pack. So, we have asked our pharmacy to order in another brand that comes instead as strips in a box. We can send a labelled part box with one strip and keep the rest at home – it makes it easier for us to monitor everything – the pharmacy has been brilliant and makes a note of it for us. The importance of consulting with the person or their family as appropriate is explained again by Barry: Our son was diagnosed with an underactive thyroid and was prescribed the replacement called levothyroxine. The hospital pharmacy didn’t ask us if our son can take tablets, so they gave us a box of tablets and a tablet-­ crusher. We tried the tablet-crusher but the tablets are so tiny that most of the crushed tablet got stuck in the screw thread. We then found out that there is a liquid alternative, but it is more expensive. If we hadn’t gone to the GP and asked to have the liquid, we’d have been forced to try and keep using the tablet-crusher and I’m convinced that our son wouldn’t have got the correct dose.

7.4.5 T  aking the Medicine, or Administering/Supporting Self-Administration Administering medication relates to how the person takes the medicine, e.g. some medicines should be taken before or after food, some require dissolving in water and some need to be swallowed whole. This information should be provided on the dispending label, the patient information leaflet or by the pharmacy professionals. Barry says: We try really hard to keep up with giving our son’s medicines but as tired carers we’ve discovered that having a regular routine is everything. He has a preventative course of antibiotics every two weeks and it’s easy to lose track, so my wife makes a note in the calendar on the fridge and in the diary. I know it’s ‘belt and braces’ approach, but we can’t afford for him to miss a dose. Not only will he get sick because of his impaired immune system, but we’ll get ill too.

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7.4.6 Monitoring and Feedback Monitoring is the process of checking that the medicine is having the intended effect (this is known as ‘effectiveness’) and if it is causing any harm. Monitoring is a continual process and may involve physical examinations, blood tests and consultation with the wider healthcare team. The patient, paid carers, support workers and relatives have an important role in feeding back to doctors, nurses and pharmacists about how they feel the medicine is working and any concerns they have.

7.5

Medicines Optimisation

The term ‘medicines optimisation’ may sound like medical jargon, but it is important as it is a set of principles that professionals should abide by in order to help people to get the most benefit from their medicines. Medicines optimisation aims to help people get the most out of their medicines by improving outcomes, avoiding unnecessary medicines, reducing wastage and improving patient safety (Picton and Wright 2013). The four principles of medicines optimisation are shown in Fig. 7.1.

7.5.1 Principle 1: Aiming to Understand the Patient Experience It is important to ensure that the medicines process focuses first and foremost on the individual receiving care, known as ‘person-centred care’. The person is the expert with regard to their preferences, personal circumstances, goals, values and beliefs Fig. 7.1  The medicines optimisation process

Principle 1 Aiming to understand the patient experience

Principle 4 Making medicines optimisation part of routine practice

Person Centred optimisation of medicines improving patient outcomes

Principle 3 Ensuring medicines use is as safe as possible

Principle 2 Evidence based choice of medicines

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and should be empowered with choice and control over their care, enabling them to make decisions that are right for them (Coulter and Collins 2011). For people with capacity to make decisions for themselves (see Chap. 3 about decision-making) and in order to make an informed shared decision, an individual should be given choices of the available medicines if this is possible, supported with necessary information. It is important that people are helped to weigh up the benefits and harms of treatments carefully so that they can come to a decision about whether or not they wish to take a suggested medication. For people without capacity to make such a decision, the decision should be made in their ‘Best Interests’ (again, see Chap. 3 about decision-making). Barry says: ‘Our son had a blood test which showed he was slightly anaemic. The doctor wanted to prescribe a full dose of iron, but we were worried about it causing constipation because our son, with his learning disability, needs full care with toileting and he can’t tell us if he has a ‘sore tummy’ or if he’s constipated. We asked if a lower dose could be prescribed but for longer, because we were aware that iron could be prescribed at different doses – it’s not like some other medicines where you must have a specific dose. The doctor was reluctant to start with but when we discussed our concern about constipation in detail and said that the anaemia was mild, they prescribed a lower dose for longer – and he didn’t get constipated which was a huge relief’. Understanding the experience of the person also involves reflecting on what medicines have worked well in the past, both in terms of how effective they were in treating a particular condition and whether there were any particularly troublesome side effects. To achieve this person-centred approach, we need to provide opportunities for people to discuss their medicines, to raise questions or concerns and for the agenda of each consultation to be jointly shared. Effective two-way communication is essential to address the issue of the increased risk of medication errors as patients move between different healthcare providers, e.g. moving from secondary to primary care or to a new healthcare team (Jubraj et  al. 2016; World Health Organisation 2016). The level of support that people with learning disabilities need to manage their medicines depends on many factors including the level of their learning disability, the provision of information tailored to them, and their ability to adhere to the required schedule for administering the medicine. Barry says: ‘We have a tool called ‘My Medication Passport’ for our son where we document all of his medicines (See: Jubraj and Thakkar 2015). It has been really useful to hand it over to different clinical staff at the many appointments we go to with him, rather than having to reel off the list when we’re tired. There was one appointment with a surgeon who wanted to prescribe an antibiotic that actually interacts with one of our son’s regular medicines. Having the record there in front of us meant that they didn’t prescribe that antibiotic’. There is a need to support people with learning disabilities to take advantage of all the medicines services that are open to them across primary and secondary care. The local community pharmacy is a good starting point and supporting people with learning disabilities to arrange a medicines consultation with the pharmacist can

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provide an opportunity to optimise the use of medicines. Services offered by community pharmacists may differ from one pharmacy to another as well as there being regional differences in commissioning arrangements. GP practices often employ pharmacists who carry out medication reviews.

7.5.1.1 Education About Medicines Good-quality accessible information about medicines is required for shared decision-­making, to empower people with learning disabilities and their support workers to feel included in the medicines optimisation process and to enable informed consent. Following the Montgomery Judgement in 2015 (Supreme Court 2015), all patients with capacity must be made aware of the risks of recommended treatment and of alternative treatments in order to provide informed consent to treatment. People are more likely to take their medicines appropriately if they have had the opportunity to discuss their medicines with a healthcare professional and to learn about their medicines and the conditions for which they are prescribed. Opportunities for people to have these discussions should be routine practice. 7.5.1.2 Exploring Missed Doses and Supporting Adherence Routine regular review is necessary to check if the medicine is being taken as prescribed. When doses are missed intentionally, or stopped, and the person has the capacity to understand, there should be a supportive, non-judgemental discussion with the person, respecting their right not to take a medicine that has been prescribed for them. Reasons for intentionally missing doses or stopping medicines suddenly without liaising with the healthcare team can be caused by a person experiencing side effects, perceiving that the medicine is no longer required or is ineffective, a lack of accessible information about the treatment plan, difficulties with swallowing, or not wanting to tell the health or social care team that the medicine does not suit them. Unintentional non-adherence may be due to difficulties with administering the medicines, inability to obtain further supplies and misunderstandings about how long the medicines are to be continued. Strategies to support unintentional non-adherence such as a reminder chart if remembering is a challenge, a compliance aid as long as the patient is not confused, or the use of mobile phone apps to prompt medication taking may be useful. Person-­ centred discussions around the administration of the medicines not only when medicines are started but at regular intervals can be helpful. If a person with a learning disability has been assessed as having capacity to manage their medicines and refuses to take their medicines, they are entitled to do so unless they have been detained under the Mental Health Act. However, if the person has been assessed as not having capacity to decide whether to take their medicines, a decision should be made about what would be in their Best Interests, as required by the Mental Capacity Act. One strategy that is sometimes agreed by a multi-disciplinary team and those who know the person best is for a covert medication plan. Administering medicines covertly is when a medicine is hidden (usually in a food) so that the person is unaware that they are taking it. Not all tablets may be crushed and taken mixed with food, particularly tablets or capsules that are

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modified release (MR) or enteric coated (EC) preparations. MR preparations are designed to dissolve a medicine over a longer period of time in order to be released slowly into the bloodstream, so can be taken less frequently than immediate release tablets. EC tablets protect medicines from stomach acid and protect the stomach from irritant effects of the medicine by releasing the medicine in the intestine. Consideration should also be given to the effects of adding crushed tablets or capsule contents to a food that is eaten regularly as they may alter the texture and taste of the food which can, in turn, discourage a person from eating and affect their nutrition.

7.5.1.3 Problems with the Administration of Medicines Professionals may assume that once a medicine is prescribed and dispensed the person will simply go ahead and take it. This is not always the case and people often have practical difficulty taking medicines, for example, because of swallowing difficulties, opening the container or reading the instruction label. Difficulties in swallowing tablets can sometimes be easily addressed by prescribing and dispensing alternative size tablets or capsules, melt in the mouth tablets (also known as orodispersible), soluble tablets or liquids or alternatives to oral administration, e.g. inhalers, creams and injections.

7.5.2 Principle 2: Evidence-Based Choice of Medicines Evidence-based medicine is based on research about a treatment to ensure that it works to treat symptoms, prevent illness or cure disease. Researchers look at many more patients than a single healthcare professional will ever treat. Sometimes the evidence cannot tell which treatment is best for an individual person and there may be differences in the medicines recommended to different people. Healthcare professionals routinely access evidence-based medicine guidelines from the National Institute for Health and Care Excellence (NICE). NICE evidence-based recommendations for health and care in England are also available to the public (see: https:// www.nice.org.uk/).

7.5.3 Principle 3: Ensuring Medicines Use Is as Safe as Possible Although problems with medicines can occur at any time, the risk is higher when a new medicine is added, a medicine is stopped, a dose is changed or there is a change in healthcare provider (World Health Organisation 2016). All medicines, both prescription and over the counter, have risks and benefits. Problems with medicines frequently occur when too much medicine is taken (a larger dose than prescribed), not enough medicine is taken (a reduced dose than prescribed or missing doses), the medicine is given to a different person than the person it was prescribed for, the person has not followed instructions carefully, or prescribed and over-the-­counter medicines have been mixed without telling the doctor, pharmacist or nurse.

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7.5.3.1 Medicines in Children and Young People Some medicines are only recommended for use in children and some are only recommended for use in adults. For many medicines the dose required is calculated according to the body weight of the child and is often less than a standard adult dose; as the child grows the dose required may increase. When supporting children and young people who are taking medicines for long-term conditions, this should be discussed with prescribers. Some medicines may be prescribed for children although the medicines may not have a marketing authorisation for prescribing in children. Barry says: Our son’s paediatricians in the hospital and community have prescribed some medicines that that the GP practice isn’t able to prescribe – either at all or only if the paediatrician states explicitly that they want it. For medicines that they aren’t able to prescribe, we have to take a hospital prescription to the hospital pharmacy which is really draining as a carer, but we do understand that there is a policy. We always ask the paediatrician to document in their clinic letter why they want our son to have the specific medicines, so we can signpost the GP to the letter when they ask us about it. It saves a lot of stress. 7.5.3.2 Medicines for Older Adults As we age, organs that eliminate medicines from the body, such as the kidney and liver, decline so medicines are removed from the body more slowly. In older people, smaller medicine doses may be needed to reduce the risk of harmful side effects which older people may be more sensitive to. 7.5.3.3 Pregnancy and Breastfeeding Many medicines are not recommended in pregnancy and breastfeeding. Women who are pregnant, or breast feeding, should not take ‘over-the-counter’ medicines without consulting the doctor or pharmacist first. People who are taking prescribed medicines and are planning a pregnancy should speak to the GP to discuss treatment options during a pregnancy. If a woman discovers she is pregnant while taking prescription medicines, she should be supported to arrange to see her GP as soon as possible. It is important that the prescriber is informed if a woman is pregnant or if she is breastfeeding in order that appropriate prescribing decisions can be made. 7.5.3.4 Interactions Between Medicines or Between Medicines and Foods A medicine or drug interaction is a change in the action or side effects of a medicine caused by taking another medicine or certain types of food or drink at the same time. An example is that drinking alcohol with some types of medicines can make a person very sleepy or unwell. Care is also required when taking complementary (alternative) medicines (e.g. herbal medicines or homoeopathic medicines) with prescribed or over-the-counter medicines, and they should be documented in the list of medicines taken by a person. This enables the prescriber to have an accurate list and to take into account any medicines interactions, something that is frequently forgotten.

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7.5.3.5 Side Effects (Adverse Effects) The terms ‘adverse effects’ and ‘side effects’ of medicines are frequently used interchangeably. Side effects can be mild, such as feeling a little drowsy or sick, to rarer severe life-threatening conditions. Although the majority of medicines can have side effects, different medicines have different side effects, and supporters of people with learning disabilities should be aware of what to look for. Barry says: One of the most anxious things about giving our son new medicines is him not being able to tell us how they make him feel - either feeling better or if he is getting any side effects. As well as having a learning disability he is non-verbal and his sign-language skills aren’t robust enough. Some side effects are visible, for example a rash, which we would see when we are changing him. But if he felt sick with a medicine, unless he was actually sick, we wouldn’t know – he’d just be listless. There are other reasons why he may be listless so we would struggle to know. We find that really hard. 7.5.3.6 Allergies Some people are allergic to some types of medicines. Allergic symptoms can range from itchy skin and rashes to breathing difficulties and anaphylactic shock which can be fatal. If the person you are supporting is allergic to a specific medicine, they should keep a note of the name of this medicine so that it is easily available, and tell the doctor, nurse, pharmacist or dentist during discussions about medicines. Sometimes side effects or intolerances to medicines can be mistaken for symptoms of allergy. 7.5.3.7 Storing Medicines Safely When storing medicines appropriately you need to consider the following points: • Most medicines should be stored at room temperature away from direct sunlight or sources of heat. • If a prescription medicine requires refrigeration (such as some antibiotic liquids), it will be mentioned on the pharmacy dispensing label, on the box and on the leaflet with the medicine. • Some medicines (such as eye drops that have been opened) have short expiry dates. Other medicines, especially liquids used on an as required basis, should be discarded within a set time of opening. Medicines stored at the wrong temperature or passed their expiry date may not work properly. This can wrongly be misunderstood as the symptoms, illness or disease getting worse and as a result the dose may be increased, or the medicine changed unnecessarily. • Medicines need to be kept in a safe place so they can be easily accessed when required but out of reach of people who may take them in error, young children and pets. • Out-of-date medicines and medicines that are no longer required can be disposed of by returning them to the community pharmacy. They should not be given or sold to another person.

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Barry says: Our son is on a sleep medication because of his learning disability and we only use it if necessary. However, once the bottle is opened, it is only ok to use for a few weeks before we have to discard it. It seems a shame to have to return an expired bottle of medicine to the pharmacy, but we know that if we try and use it, it just won’t work.

7.5.3.8 The STOMP Programme In 2011, the BBC Panorama television programme uncovered poor care and horrific abuse by staff at Winterbourne View, a hospital for people with learning disabilities in South Gloucestershire. The following year the report, Transforming Care: A National Response to Winterbourne View Hospital (Department of Health 2012) raised concerns about the overuse of psychotropic medicines (medicines that affect mood, thoughts, emotions and behaviours) in people with learning disabilities and recommended that services should have systems and policies in place to ensure medicines are reviewed regularly. Further reports indicated that more psychotropic medicines are prescribed for people with learning disabilities than in the general population, often with no mental health diagnosis and without regular review, and that there is poor communication with parents and carers, and between different healthcare providers (Public Health England 2015; Sheehan et  al. 2015). It was also found that patients, carers and families did not always understand why these medicines had been prescribed (NHS Improving Quality 2015). This has led to the introduction of the STopping Overprescribing of Medication in People (adults) with learning disability, autism or both (STOMP) campaign by NHS England which is aiming to decrease the prescribing of psychotropic medicines in people with learning disabilities, autism or both in the absence of a documented mental health diagnosis (NHS England 2017). In addition, the Supporting Treatment and Appropriate Medication in Paediatrics (STAMP) programme has been introduced to ensure that children and young people with learning disabilities, autism or both who need medicines to manage behaviour that challenges are prescribed it for the right reason, in the right amount, for as short a time as possible, with regular review and monitoring, helping them, together with their relatives and carers, to understand more about these medicines (NHS England 2019). Why do we need to review psychotropic medicines? Side effects of psychotropic medicines and a lack of monitoring can affect the physical health of people with learning disabilities. Some psychotropic medicines have the side effects of weight gain, diabetes, high blood pressure and high cholesterol contributing towards poor health outcomes, increased morbidity and premature mortality. It is therefore important that the physical health of people with learning disabilities is checked regularly. In addition, there is limited evidence regarding the long-term use of psychotropic medicines to manage behaviour that challenges. Further information about strategies to support behaviour can be found in Chap. 4.

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7.5.4 P  rinciple 4: Making Medicines Optimisation Part of Routine Practice 7.5.4.1 Monitoring Medication Routinely Monitoring medicines use is a continual process and should be part of routine practice. This may involve regular medication reviews—meetings with the doctor, pharmacist or nurse to talk specifically about medicines. It is important that medicines are reviewed regularly at agreed specific time intervals to check if: • • • • • • • • • •

The medicine is still required. The medicine is working well. The medicine is being taken as prescribed. The form of the medicine is still appropriate. The dose may need changing. The medicine may need changing to an alternative. The medicine is still appropriate for the person. The timing of the medicine administration is still appropriate for the person. The person is experiencing any side effects. The person is attending appointments for monitoring their physical health.

As people with learning disabilities are more likely to experience poor health, they are more likely to be prescribed several medicines. If they also have difficulties in accessing healthcare, their medicines are less likely to be monitored and reviewed regularly putting them at increased risk of problematic polypharmacy. Barry says: We are very fortunate that our son is under the care of paediatricians, who have a good overview of all his conditions and issues, so they routinely review his medication list as a whole, at least annually. We worry about when he turns 18 and transfers to adult services, where there may not be a specialist who has an overview of all his medicines together. Sure, he may see one specialist for his asthma and another for his thyroid, but one doctor may not know what the other one has prescribed. And the GP may not want to question what each specialist has prescribed, even if the medicines interfere with each other. Therefore, it is very important that everyone involved in the medicines use process remains vigilant and feels confident to question any medicines that don’t appear correct. Addressing polypharmacy by reviewing all medicines, and deprescribing where appropriate, should be a routine part of medicines optimisation for people with learning disabilities. Some GP practices employ pharmacists to carry out medicine reviews. If this service is available, you may wish to support the person with learning disabilities to request and attend an appointment. Monitoring may also involve observing the person to determine if the medication is working, being used appropriately and not appearing to cause harm. People with learning disabilities, their carers and relatives, have a significant role to play in

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monitoring the effects of medicines and providing feedback to the prescriber and the wider healthcare team. Therefore, it is important to stress the value of this communication in contributing to improved benefit and safety from medicines, and is of particular importance when starting new medicines and changing a dose of medication.

7.6

Key Tips to Get the Best Out of Medicines

When supporting people with learning disabilities with their medicines, the following key tips may be useful: 1. Keep an up-to-date list of all medicines, and any allergies to medicines. (a) This list can be in paper format, electronic or on a mobile phone. (b) Remember to update the list every time a medicine or dose is changed. (c) This list should include prescribed medicines and any over-the-counter or herbal medicines. (d) All types of formulations of medicines should be included, e.g. medicines taken by mouth, injections, patches, creams, inhalers or drops. (e) Some specialist medicines are only available from hospital prescribers and hospital pharmacies. It is particularly important that these medicines are included on the list as they can easily be forgotten. (f) Take the list of medicines to any healthcare or dental appointments. (g) Any problems with your medicines should be written down and taken to the appointments. (h) In addition to planned healthcare appointments, it can be helpful to carry the list of medications when going out, in case the person becomes unwell unexpectedly and needs the assistance of a healthcare professional who may not be familiar with the person. 2. When a new medicine is started, changed or reviewed at appointments you or the person you are supporting may wish to consider asking the following questions: (a) What is the name of the medicine and what is it for? (b) How and when do I take it and how long do I take it for? (c) How do I obtain more medicine when this supply is finished? (d) What side effects can I expect and what should I do about them? (e) What should I do if I miss a dose? (f) Does the medicine need to be taken regularly or just when required? (g) When should I expect the medicine to begin working? (h) Do I need to take this medicine with food? (i) Where should I store the medicine? (j) Do I need to avoid any other medicines, foods or alcohol? (k) Is there any additional printed information I should read? (l) Will I need regular blood tests while I am taking this medicine?

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Exercise 7.2 Supporting People with Learning Disabilities

Look at the list that you made in Exercise 7.1. We asked you to reflect on your thoughts about the medicines that you (or a close family member) take. Now think about the support you provide to people with learning disabilities. Consider what is important to you and what will be important to people with learning disabilities. Write down some ideas about how you could best support people with learning disabilities by: • Helping to empower people to be equal stakeholders in the medicines use process. • Maximising their access to healthcare, in order to help reduce health inequalities. • Being aware of local services that support medicines optimisation. • Maximising the effectiveness of medicines to improve positive health and treatment outcomes. • Reducing the risks and side effects of medicines by maximising the safety of medicines. • Thinking about your own role in monitoring and feedback about the use and effectiveness of medications.

7.7

Summary and Conclusions

In this chapter we have considered the medicines optimisation process: how we can get the most out of our medicines in a safe patient-centred way. The medicines optimisation process places the person at its centre, and is based on four principles: 1 . Aiming to understand the patient experience. 2. An evidence-based choice of medicines. 3. Making medicines use as safe as possible. 4. Making medicines optimisation part of routine practice. We have also discussed how medicines fit in with shared decision-making and how people with learning disabilities can be empowered as much as possible to be equal partners in the medication process.

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Reflective Space

Before moving on to the next chapter, think about what you have learnt in this chapter and how it relates to your work supporting people with learning disabilities. In Exercise 7.1 you were thinking about why you take the medicines you are prescribed, who you would contact for advice about your medicine or any side effects, how you remember to take medicines regularly, and understanding what medicines are appropriate to buy without a prescription. Having completed the chapter we hope that you feel more confident in answering these questions. In Exercise 7.2 you were thinking how best to support people with learning disabilities in optimising their medicines. Now you have completed this chapter on medicines, what will you do to apply this learning? What actions do you need to take so that the people with learning disabilities that you support can get the best out of their medicines?

Sources of Additional Information Pharmacists and the community pharmacy team can provide information and advice on a wide range of medicines and healthcare related issues. For more information about the role of the pharmacist, and to check the register of pharmacists see https://www.pharmacyregulation.org/raising-concerns/raisingconcerns-about-pharmacy-professional/what-expect-your-pharmacy/what-does-0 For information on medicines, see NHS Choices. http://www.nhs.uk/pages/ home.aspx For information on medicines in children, see Medicines for Children. https:// www.medicinesforchildren.org.uk/general-leaflets For information on psychotropic medicines, see: Choice and medication website (includes easy read material) http://www.choiceandmedication.org/ Royal College of Psychiatrists public website http://www.rcpsych.ac.uk/ expertadvice.aspx MIND http://www.mind.org.uk/information-support/drugs-and-treatments/ For information about prescription charges and exemptions, see: https://www. nhs.uk/using-the-nhs/help-with-health-costs/get-help-with-prescription-costs/

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References Coulter A, Collins A. Making shared decision-making a reality. London: The King’s Fund; 2011. Department of Health. Transforming care: a national response to Winterbourne. 2012. https:// www.gov.uk/government/uploads/system/uploads/attachment_data/file/213215/final-report. pdf. Accessed 18 Dec 2019. Doan TN, Lennox NG, Taylor-Gomez M, Ware RS. Medication use among Australian adults with intellectual disability in primary healthcare settings: a cross-sectional study. J Intellect Dev Disabil. 2013;138(2):177–81. Duerden M, Avery T, Payne R.  Polypharmacy and medicines optimisation. Making it safe and sound. London: The King’s Fund; 2013. Elliott R, Camacho E, Campbell F, Jankovic D, St James MM, Kaltenthaler E et al. Prevalence and economic burden of medication errors in the NHS in England. Rapid evidence synthesis and economic analysis of the prevalence and burden of medication error in the UK. 2018. Universities of Sheffield and York: Policy Research Unit in Economic Evaluation of Health and Care Interventions. 2018. http://www.eepru.org.uk/article/prevalence-and-economic-burdenof-medication-errors-in-the-nhs-in-england/. Accessed 17 Dec 2019. Heslop P, Blair PS, Fleming P, Hoghton M, Marriott A, Russ L.  The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study. Lancet. 2014;383(9920):889–95. Jubraj B, Deakin A, Mills S, Grimes L. Pharmacy consultations with people with learning disabilities. Pharm J. 2016;296(7885):43–5. https://doi.org/10.1211/PJ.2016.20200330. Jubraj B, Thakkar K. My medication passport. Down’s Syndrome Assoc J. 2015;132:23–4. Krahn GL, Hammond L, Turner A.  A cascade of disparities: health and health care access for people with intellectual disabilities. Ment Retard Dev Disabil Res Rev. 2006;12(1):70–82. NHS.  Overview. Medicines information. 2019. https://www.nhs.uk/conditions/medicines-information/. Accessed 17 Dec 2019. NHS England. Supporting treatment and appropriate medication in paediatrics (STAMP). 2019. https://www.england.nhs.uk/learning-disabilities/improving-health/stamp/ Accessed 19 Dec 2019. NHS England. Stopping over medication of people with a learning disability, autism or both (STOMP). 2017. https://www.england.nhs.uk/wp-content/uploads/2017/07/stomp-gp-prescribing-v17.pdf. Accessed 18 Dec 2019. NHS Improving Quality. Winterbourne medicines programme. 2015. https://www.england.nhs. uk/6cs/wp-content/uploads/sites/25/2015/03/winterbourne-medicines-flyer.pdf. Accessed 19 Dec 2019. Picton C, Wright H. Medicines optimisation: helping patients to make the most of medicines. Good practice guidance for healthcare professionals in England. London: Royal Pharmaceutical Society; 2013. Public Health England. Prescribing of psychotropic drugs to people with learning disabilities and/or autism by general practitioners in England. 2015. http://clok.uclan.ac.uk/17970/1/ Psychotropic%20medication%20and%20people%20with%20learning%20disabilities%20 or%20autism.pdf. Accessed 19 Dec 2019. Sheehan R, Hassiotis A, Walters K, Osborn D, Strydom A, Horsfall L, et al. Mental illness, challenging behaviour, and psychotropic drug prescribing in people with intellectual disability: UK population based cohort study. BMJ. 2015;351:h4326. https://doi.org/10.1136/bmj.h4326. Supreme Court. Judgment. Montgomery (Appellant) v Lanarkshire Health Board (Respondent) (Scotland). 2015. https://www.supremecourt.uk/cases/docs/uksc-2013-0136-judgment.pdf. Accessed 17 Dec 2019. van Schrojenstein Lantman-de HM, Walsh PN. Managing health problems in people with intellectual disabilities. BMJ. 2008;337:a2507. https://doi.org/10.1136/bmj.a2507. World Health Organisation. Medication errors: technical series on safer primary care. Geneva: World Health Organization; 2016.

8

Death and Dying Irene Tuffrey-Wijne and Jean Willson

8.1

Overview

This chapter helps readers to understand what happens when someone reaches the end of life. We explain what good palliative care and end-of-life care looks like and how it can be achieved. We focus on the following areas: • Involving the right services, including a range of health and social care professionals. • Managing pain and other symptoms such as nausea, breathlessness or exhaustion. • Providing emotional, spiritual and social support, to ensure support for all areas of life. • Involving and supporting family and friends. Palliative care extends to all the people who are important to the dying person. • Advance care planning, a process where the person, their families and professionals talk about options and wishes for future care. • Shared decision-making, to help people be involved, as much as possible and as much as they want to, in treatment and care decisions that affect them. • Information and communication, to help people talk about illness and dying and cope better with their situation. • Death, and knowing what to expect. • Bereavement support for all those left behind, including family, friends and staff. We will illustrate these issues through the story of Victoria Willson, who had profound learning disabilities and died aged 43 following a long period of declining health. I. Tuffrey-Wijne (*) · J. Willson Faculty of Health, Social Care and Education, Kingston and St. George’s University of London, London, UK e-mail: [email protected] © Springer Nature Switzerland AG 2020 P. Heslop, C. Hebron (eds.), Promoting the Health and Well-Being of People with Learning Disabilities, https://doi.org/10.1007/978-3-030-43488-5_8

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Initial Reflections

Have you ever supported a person with learning disabilities who was terminally ill? Have you ever been around when a person with learning disabilities was dying? It’s not easy to think about, but it is important. One hundred percent of the population will die. That includes every single person with learning disabilities that you know. We hope that all people with learning disabilities live long and fulfilling lives, and we want to help them achieve it. But sooner or later, when the end comes, are you prepared? We will guide you through some of the issues that you need to think and know about when it comes to death and dying. We will do this with the help of Victoria Willson, who died in 2013 at the age of 43. Hers is a real-life story, told by her mother Jean, who co-authored this chapter. Let’s meet her. Victoria Willson was six months old when she was diagnosed with tuberous sclerosis. This affected her brain, skin, and later her kidneys. She had profound physical and learning disabilities, scoliosis, uncontrolled epilepsy, and behaviour which could challenge. She did not understand or use words but communicated with her eyes. She was a full-time wheelchair user and was totally dependent on others for all her needs. Throughout her life she had major health problems and was often in hospital with critical conditions. Victoria lived an amazingly full and active life, in spite of her disabilities. She had a wicked sense of humour and loved music, food, men, fun and adventures; going to operas, concerts and pubs; and hosting parties in her house. Unusually for a woman with such profound disabilities, Victoria lived safely and happily as a tenant in her own house, together with Lisa, who also had severe multiple disabilities. They had a package of support from a learning disability service provider, with staff present in the house 24 hours a day. Victoria’s parents and sister lived nearby, and she also had a ‘circle of friends’ who advocated for her. In 2006 her renal team diagnosed many tiny tumours in her kidney. They explained that transplant and dialysis were not an option. So began the long process of kidney failure. For the last 20 years of her life, everyone knew Victoria was dying, but no-one knew when. She became weaker and weaker, needing more and more support. Victoria was deeply loved, and her family, friends and carers were devastated by her advancing illness.

Exercise 8.1 Self-Reflection

Write down your thoughts and answers to the following questions: • How would you describe a ‘good death’ for people without learning disabilities? • What would be a ‘good death’ for you? • How do you imagine a ‘good death’ for Victoria—and is that the same, or different, from people without disabilities?

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• What do services need to do, to make sure Victoria has a ‘good death’? • What would be your role in this situation? • How could you help and support Victoria and her family, and what difficulties and challenges would you face? • On a scale from 1 to 10, to what extent would you be… Confident? Worried? Frightened? Distressed? • What would be your main worries and fears? • What help and support would you need, and do you know where to find it? When you described a ‘good death’, you may have included the following: • • • • •

Free of pain and other distressing symptoms. Free of fear and anxiety. In a place where you feel comfortable and safe. Surrounded by the people you love (who also need to be well supported). Supported by competent staff.

This is not an exhaustive list, but it includes all the things Victoria needed. In order to make it as likely as possible that she had all this, she needed good palliative and end-of-life care.

8.3

Key Concepts

8.3.1 Palliative Care Palliative care is the care, treatment and support of people who have a life-limiting illness (that’s an illness that can’t be cured, and that the person is likely to die from), and their families and friends. The aim of palliative care is to have as good a quality of life as possible in the time that is left. Most people think of palliative care in relation to cancer patients, but it is also available for people with other life-limiting conditions, such as dementia or end-­ stage heart failure. Increasingly, there is recognition of the need for palliative care of people who have ‘frailty’, usually associated with older age: people who have multiple co-morbidities, are increasingly weak and tired, find it more difficult to recover from trivial illnesses, and are generally going gradually downhill. Every time they recover from a setback (a chest infection, for example), they are not quite as strong as they were before. Palliative care can be given anywhere: in people’s own home, in hospital, in a hospice, a nursing home, or in residential homes for people with learning disabilities. Most day-to-day palliative care is given by primary care teams, including GPs, district nurses, social workers and spiritual care providers. The community learning disability team can also help. Specialist palliative care professionals are experts

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who can help when things are more complex; they include palliative care doctors, specialist nurses, social workers, counsellors and therapists. They are usually based in hospices or hospitals but will visit patients and families at home.

8.3.2 End-of-Life Care End-of-life care is part of palliative care. It’s the treatment, care and support people receive in the last year of life (although it can be very difficult to predict how long someone has left to live). In addition to the bullet points above, an important part of end-of-life care is talking to patients and families about what to expect towards the end of life, what their needs and wishes are, and making sure that as much as possible, they receive the care that they want. Some of the key concepts within palliative and end-of-life care are: • Involving the right services. It is likely that a whole range of services is needed, and these all need to work together. This can include primary care professionals (the GP is most likely to be involved; for people staying at home, the district nursing team is also likely to be important), hospital teams (especially if the person is still undergoing treatments and tests) and the specialist palliative care team, but referrals may be made to many other professionals. It is important that someone coordinates all these professionals. • Managing pain and other symptoms (such as nausea, breathlessness or exhaustion). Assessing physical symptoms, finding out what causes them and then treating them (for example, with medication and/or complementary therapies) is a key part of good palliative and end-of-life care. It is very hard to have a good quality of life or die a ‘good death’ if you are in pain. • Providing emotional, spiritual and social support. There is a strong emphasis on holistic care, supporting all areas of life, and recognising the interplay between them. Being emotionally or spiritually distressed can make it more difficult to cope with pain, for example. • Involving and supporting family and friends. Palliative care is not just for the person who is ill, but for all the people who are important in their life. • Advance care planning. This is a process where the person, their families and professionals talk about the options and wishes for future care. It includes not only what treatment people want or don’t want, but also, for example, where they like to be cared for in their final months and where they would like to die; what they would like to do with their time; or who they would like to be involved in their care. Advance care planning is helped by an understanding of the likely illness trajectories and the available options, so it needs the help and support of professionals who know about this. • Shared decision-making. This is closely linked to advance care planning. People should be involved, as much as they want to, in treatment and care decisions that affect them, and decide who should make the decisions for them if they cannot do it themselves.

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• Information and communication. People cannot be involved in advance care planning or shared decision-making unless they know and understand what is happening to them. Furthermore, many people find it easier to cope with difficult life events if they understand what is happening. Talking about dying is difficult, and not everyone wants to; but it is important to create the space and opportunities to do it, and to address any questions or worries. • Death. Most people within our society are unfamiliar with death and do not know what to expect. Patients and families may be frightened of what will happen. Good palliative care includes supporting and reassuring everyone and helping the patient to have calm and peaceful death. • Bereavement support. Support for family and friends continues after the death. They, too, need to be given the space and opportunities to talk about death and dying, both before and after the person dies.

8.4

 alliative and End-of-Life Care for People P with Learning Disabilities

The key concepts within palliative care are just as important for people with learning disabilities, but they can be much more difficult to achieve. Let’s look at the challenges and see what happened with Victoria, who was supported to stay in her own home during her final illness and die there.

8.4.1 Involving the Right Services People with learning disabilities are less likely than the general population to be referred to specialist palliative care services (Heslop et al. 2013). The reasons for this are not clear. It could be that it is much more difficult to know when people with learning disabilities are in the last year of life. They often have multiple and sometimes life-long comorbidities, like Victoria. The signs of progressive illness or deteriorating health may be obscured by unconventional behaviour or communication. It is also possible that mainstream services are unsure about supporting people with such diverse needs, or that learning disability staff and families are worried about referring someone to a hospice. Involving the right services requires services to work together and learn from each other. It helps if it is clear who coordinates the care. Jean says: ‘During Victoria’s last year of life, many professionals were involved and visited her at home. They were her GP, community nurses, physiotherapist; occupational therapist; social services; masseuse, hairdresser and a psychologist. Two years before Victoria died, the palliative care team entered her life after I had asked about this. I had heard that palliative care professionals might be able to help, even though Victoria’s illness was highly unpredictable, and she might live another few years. I spoke to Victoria’s renal consultant about it, who referred Victoria to their local palliative team. The team was based at the local hospital, but also covered the community. They contacted me the following day and met Victoria

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in her home a week later. The palliative nurse knew a lot about supporting people and families at the end of life but had never worked with people with learning disabilities. The learning disability care provider provided a highly skilled and well-­ staffed team, who were very able to support someone living in the community but were inexperienced in supporting someone at the end of life. As Victoria’s parents, together with her sister and two friends, we were able to demonstrate and articulate how Victoria and us wanted Victoria to remain living in her own home. Everyone had to learn to work together. Using good listening skills, reflecting back and being honest, it began to work well. Initially the palliative team were surprised by our experience and expectations! We were relieved when we found that the palliative care team could open doors and had the professional ability to apply and get other medics to follow what we knew Victoria wanted’.

8.4.2 Managing Pain and Other Symptoms Pain and symptom management can be particularly complex in people with comorbidities and chronic medical conditions; multi-pharmacy is not uncommon. Pain is often not recognised, validated or treated in people with learning disabilities: they receive less opioid analgesia in their final illness than the general population (Heslop et al. 2013). Pain and symptom assessment are complicated by the unconventional ways in which many people with learning disabilities express their symptoms. Selfreporting can be difficult, and standard pain assessment tools may not work well for this population. Jean says: ‘As Victoria’s kidneys were failing and her physical condition deteriorated, great care had to be taken with hygiene, eating and drinking, showering, changing and moving her. She developed chronic anaemia, itchy skin and bouts of nausea and diarrhoea. She needed great encouragement to eat and drink and take her medication. Everyone worked together on solutions, such as giving crackers before eating and using a particular cream for her skin. With the advice and support from professionals, Victoria’s team of care staff became even more patient, inventive and highly skilled.’ Victoria’s palliative care nurse specialist appreciated the skills of the carers in interpreting Victoria’s communication. She said: ‘I’ve learned that there are communications that can extend beyond verbal and nonverbal cues – like transmission of a feeling. For months I had to rely a lot on people who knew her well for insights and then one day, I got it – Victoria let me see something. It wasn’t that she couldn’t communicate with me, or that I wasn’t able; she took her time to decide whether I was OK or not. It’s very precious when you get that look’.

8.4.3 Providing Emotional, Spiritual and Social Support The emotional, spiritual and social needs of people with learning disabilities can also be easily overlooked. In addition, their emotional capacities (including the capacity to cope with illness, death and bereavement) are often underestimated.

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Jean says: ‘As Victoria grew weaker and more tired, pacing her and her moods was imperative. Now the world came to her, and to keep up everyone’s spirits there were themed tea parties and visitors at her house. Her family and care staff worked together, trying to find new things for her to experience when she was awake. Her bedroom became an emporium full of smells, sounds, things to look at, and tactile objects to feel. It was made more colourful with fairy lights and flowing silk drapes. Music, Victoria’s passion, was used to pacify or stimulate and her carers became experts in reading her body language.’ Her team leader said after Victoria died: ‘I remember some emotional and frustrating lows but also some unexpectedly jolly highs. One of the challenges was watching Victoria become less able to go out and do as she pleased but it was also fun creating ways that we could make the day enjoyable if it’s going to be a day in bed or a day without food!’ Her palliative care nurse specialist said: ‘I hope that the carers, who were with her all the time, realise how grateful wider health care professionals were to see the quality of the care that Victoria was in receipt of from them and how impressive their adaptability was as Victoria’s condition deteriorated. I will always remember a happy, tinfoil and pink feathers laden home where the workers wanted to be there and where the love and protection of the family was always present’.

8.4.4 Involving Family and Friends Families and carers are often hugely important in the lives of people with learning disabilities, and they can be effective advocates. They play a crucial role in helping the person cope with their situation, providing communication support and helping with decision-making. The social networks of people with learning disabilities can be very different from those of the general population, with fewer partners and children, and more important roles for siblings and parents. It also includes friends who may need help in keeping the friendship going, and professional carers who may have become very close to the person. They need to be involved as partners in care, and they need support. ‘Victoria’s parents, sister, and five of her ‘circle of friends’ were a constant source of support and guidance. For the last two years of her life, her mother Jean visited the house every day. For two long years, Victoria and Lisa’s home was always full of marvellous music, fun, love and laughter, with visitors raising their spirits. Jean set the tone, telling everyone it was very important for Victoria and Lisa’s morale and the staff ’s well-being. Visitors sometimes told them they were apprehensive about visiting a dying woman, especially one with such profound disabilities. However, all of them left inspired and humbled by the love and care that surrounded Victoria, and Victoria certainly showed enjoyment at seeing guests! Gradually Victoria’s strength diminished. She became more and more tired and crises were coming more frequently. In the week leading up to her death, many people popped in to say goodbye. For one week, someone was always holding her

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hand. We all sat in her bedroom, gossiping, drinking tea, telling her what was happening in our world. Very moving precious moments.’

8.4.5 Advance Care Planning There is evidence that the deaths of people with learning disabilities are poorly anticipated and poorly planned for (Heslop et  al. 2013). Advance care planning requires everyone involved to be open and honest about the illness and prognosis. There should be an understanding that it is not a one-off discussion, but a process that involves discussions over time. It can be hard to initiate these conversations. Jean says: ‘Victoria had the most detailed health action plan, health passport and care plan. Her palliative care nurse introduced the need for an advance care plan and took the lead in making sure that Victoria had one. The documents were jointly written by her teams and parents and proved invaluable working guidelines. For example, Victoria’s advance care plan stated that she did not want to go hospital anymore, but should, wherever possible, be treated either at home or in an ambulance. Both provider and palliative team followed these wishes. During the final months of Victoria’s life, the family and teams worked together to write her End of Life Advanced Care Plan. They all agreed that no radical treatment would be given. Victoria did indeed remain at her own home, happily, and died there’.

8.4.6 Shared Decision-Making, Information and Communication People with learning disabilities are particularly vulnerable to being excluded from making decisions that affect them. Being involved in decision-making requires the person to have as much information as they need, in a format that they understand. This can be difficult to achieve. Talking honestly, open and clearly about illness and death, and about the options available, is difficult. There is consistent evidence that people with learning disabilities are often not told about death and dying and are not involved in death-related rituals. ‘Throughout Victoria’s life, Jean talked to her about every aspect of her life, even though she was never sure if Victoria understood her. So, Jean began to talk to her about dying, and told her she could go whenever she wanted. Jean never knew whether Victoria understood these words, but she had always felt it was important that Victoria was included in everything about herself  – so why not the biggest thing, her death? Victoria did not have the capacity to make decisions about her treatment and care, so these became ‘best interest’ decisions that involved her ‘circle of friends’ and her family. Together with her renal consultant, they decided that she would not have dialysis or kidney transplant because they felt that she would not have wanted it. Later a ‘best interest’ meeting was held with family, her circle and social services when Do Not Resuscitate was placed on all her medical files, including her Acute

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Care Plan. Victoria’s family and her team of care staff knew she would have chosen to remain in her own home and die with dignity. They planned her funeral and ‘celebration of life’ service mostly around Victoria’s bed, which gave them a sense that she was included. What to tell Lisa was not easy to agree on. Lisa’s parents found it particularly hard to deal with difficult subjects. A ‘best interest’ meeting was held for Lisa, where it was decided that Lisa would want to know information about her flatmate who she had lived with for years. Together with Lisa’s staff team, Jean and Victoria’s care staff told Lisa that Victoria was going to die soon. The family and care staff invited Lisa into Victoria’s bedroom every day, so she could sit with her friend and say goodbye to her’.

8.4.7 Death Many of the staff working in learning disability services are unfamiliar with the process of death and can be very frightened. ‘What if I’m on duty when she dies?’ In their final days, the deaths of people with learning disabilities are not so very different from those of the general population. Primary care and palliative care professionals will know how to manage and support this, but they need to understand that families and care staff need significant support. Friends with learning disabilities may also need encouragement and support to be included and to say goodbye. Jean describes Victoria’s last day: ‘On Saturday 21 September, the palliative team told us to stop food and drinks, and we, her family knew this would be her last day. We told her staff and Lisa to say goodbye. This was poignant and heart-­ breaking, as each of them spoke personally and movingly to her. At 11 pm I told my husband and daughter to go home and get some rest. I would stay with Victoria and her night worker. At 3  am, with Emma (one of her care staff) and I holding her hands, in her own beloved bedroom, surrounded by things she loved, soft twinkling lights, and ‘Namaste’ her Buddhist Monk’s music quietly playing, Victoria died very gracefully and peacefully. Her face immediately lost its pain and grey colour, and once again our much-loved daughter became beautiful and at peace. My husband and her sister arrived. We all cried and said our goodbyes. When the death is good all the pain is forgotten. We three women then washed and dressed Victoria in her specially chosen clothes. This was our last and final gift to her. It was a colourful pink funeral, with a pink coffin – a celebration of her life. A staff member, her three friends, a doctor and all her family spoke. Her favourite music was played. It was held in our local church, which has strong links with our learning-disabled community. Over 400 people attended, including Lisa and many people with learning disabilities. Everyone wore something pink, orange or red, Victoria’s colours. Victoria died on 22 September 2013, aged 43. We, her family, look back now with peace and pride in being part of the team that enabled Victoria to live happily and die majestically’.

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8.4.8 Bereavement Support When people with learning disabilities die, they often leave a huge hole in other people’s lives. The grief of families and friends mourning the loss of someone with learning disabilities is sometimes disenfranchised, not recognised as hugely significant. Paid care staff are also affected by the death and may be grieving, which needs to be recognised and supported. Victoria’s family and the people who knew her, including her friends and the staff who supported her, come together to remember her birthday and anniversaries. Jean feels it is very important to keep talking and remembering what a remarkable woman and daughter Victoria was. Since her death, Jean has actively worked to tell Victoria’s story, so that others may know that it is possible to have a good death, and so that her name and memory live on. This book chapter is part of Victoria’s legacy. To help Lisa grieve for Victoria, her staff team often showed Victoria’s photos and talked about the good times they had. Exactly a year after Victoria died, Lisa herself died unexpectedly (but peacefully) in her sleep. Lisa’s mother said she was never the same after Victoria died. Twenty-four years is a long time to live together. Some staff members needed emotional support after both women died. It was a particularly difficult time for the organisation that provided care for Lisa and Victoria; within that two-year period, five more people with profound learning disabilities died in their thirties and forties.

8.5

 trategies to Overcome Potential Difficulties S in Providing Palliative and End of Life Care for People with Learning Disabilities

8.5.1 Involving the Right Services Few professionals and services will hold all expertise, so it is important that they work together. • If you work in learning disability service, make contact with your local palliative care team. Where are they based? Who are they? Have they ever supported people with learning disabilities? • If you work in a primary or secondary healthcare or in palliative care, make contact with your local Community Learning Disability Team. Where are they based? Who are they? Have they ever supported a person who was dying? Once those contacts are made, it is much easier to put the right services in place when the need arises. Together, you may find that you can exchange knowledge and expertise. You could set up mutual staff training sessions. It is a good idea to tell professionals from other services what you know and what your area of expertise is, but also, what you don’t know. Healthcare professionals may not realise, for

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example, that learning disability support staff are often inexperienced in working with ill people and may be very anxious about supporting someone who is terminally ill.

8.5.2 Managing Pain and Other Symptoms This is an area where collaboration between staff and families who know the person, and healthcare professionals who know about pain and other symptoms, is absolutely crucial. If someone doesn’t communicate their pain and other symptoms in a conventional way, or is unable to explain exactly what their pain is like, it may be impossible for doctors and other healthcare professionals to know how to treat it—or even to know that there is a problem at all. Continuous communication between everyone involved is key. If your expertise is in pain and symptom control (doctors, nurses, palliative care teams etc.): • Listen carefully to the person. They may be able to tell you or show you more than you think. • But… beware that they may simply say ‘yes’ to your questions, or (if you give a list of options) repeat the final option or say what they think you want to hear. • Find out from the carers whether they are concerned about the person being in pain or discomfort. • Find out whether there is a change in the person’s usual behaviour. A normally gregarious person who has now become withdrawn may be in pain, for example. • Consider the most likely causes of the distress, and treat that, based on your ‘educated guess’; then get the carers to monitor the effects of your treatment (e.g. new medication) and report back to you very regularly. • Remember: it is usually better to get the treatment wrong (and adjust it until you get it right) than to leave the person in pain or distress. If you are care staff or a family member: • Beware that any changes in normal behaviour could be a sign of pain or other symptoms (such as nausea or fatigue). Report it to the doctor. • Healthcare staff might need help in understanding that the person you support may not express pain or other symptoms in usual ways and may even say they have no pain. • Ask the doctor or specialist nurse what symptoms to look out for. They will know what the most common symptoms are. • Observe carefully. Keeping an observation diary might help. If the person shows distress, is it constant? Related to eating? Related to movement? This is all useful information for doctors. • If new medication is prescribed, ask doctors and nurses what to expect and what the side effects are.

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A very useful tool to help you with all this is the Disability Distress Assessment Tool, which you can access online (https://www.stoswaldsuk.org/how-we-help/weeducate/education/resources/disability-distress-assessment-tool-disdat/). For more information about the Disability Distress Assessment Tool, see Chap. 2.

8.5.3 Providing Emotional, Spiritual and Social Support The changes that come with terminal illness and approaching death can be very frightening, especially for people who find it difficult to cope with change at the best of times. Everybody is different, so it can be difficult to know what someone’s support needs are. Some people are helped by talking about what is happening to them, while others find it easier to cope if they don’t think or talk about it. Many people are comforted by familiar rituals and routines and like to keep them going as long as possible, even if it needs a bit of creativity to achieve it. Someone may like to go to work or to their day centre every day, even if they can only stay for a short time and can’t do any work. Someone may want to keep drinking tea even if it means putting thickeners in it. Keeping an open mind about what someone’s needs are and being honest about everyone’s feelings and emotions (including your own), is important. You may want to involve people who are more comfortable in addressing emotional, spiritual and social needs, and who are able to sit with the person, talk with them, and also support your team. This could be anyone—such as an experienced staff member, a religious leader, a social worker (most palliative care teams have highly experienced social workers) or a volunteer.

8.5.4 Involving Family and Friends The final months, weeks and days of someone’s life are highly emotional times, especially for families. The person with learning disabilities is likely to have a very important place within their family, even if family members have not been in touch for a long time. Great sensitivity is needed to involve and support families in a way that suits them. Feelings of guilt are not uncommon, especially if family relationships have not been straightforward. Sometimes, there can be friction between families and care staff at this difficult time, especially if there is disagreement about the best way to support the person. Talking with families and trying to understand their needs, perspectives and concerns will benefit everyone. It is, of course, also important to try and understand what the person with learning disabilities wants, and who they want to have around. A good question to ask is: ‘What makes a good day? What makes a bad day?’ It is all too easy for someone who is ill to become isolated. They may be in hospital or unable to leave their bedroom, as was the case with Victoria. If their friends also have disabilities, it is sometimes not possible for them to visit without support or without someone organising it for them. Sometimes, friends (especially those with learning disabilities) are protected from seeing the ill person, in case it is

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upsetting. However, it is almost always best to involve and include everyone as much as possible, to ‘bring the world to the bedside’, and to ensure that contact with family and friends is kept going. This will not only benefit the ill person, but also the friends themselves—it will make their grieving process a little easier.

8.5.5 Advance Care Planning There are a lot of choices and decisions to be made with regard to the end of life, including decisions about treatment, care, best place of care and place of death, bucket lists, funeral wishes and what should happen after death. Most people with learning disabilities are not involved in making these choices, but they should be. It is a good idea to set up meetings with everyone involved (as happened for Victoria), and to record what is decided. For the most important decisions, such as whether or not to have further treatment, a ‘best interest’ meeting and decision is crucial. There are documents available that can help record advance care planning choices, including easy-read documents that can be used with people with learning disabilities (although many of these have a focus on funeral planning rather than end-of-life care planning). See the Resources section for further details. Remember, however, that advance care planning is not a one-off event. There should not be a one-off document, but a working document that is constantly changing. Advance care planning is a process of conversations that continue until the end. Situations change, people’s condition may change, and people’s wishes and preferences may change. In the general population, for example, it is not uncommon that during the final days of life, patients change their minds about where they want to die.

8.5.6 Death Supporting a person towards the end of life can be scary. Make sure that staff know exactly who they can call for help, support or advice, at any time of the day or night. Having confident carers is a huge part of ensuring a ‘good death’. Having someone available who has seen people die before, who is not afraid of the dying process and who can reassure both the dying person and the staff, making them feel more confident, is essential. The person’s care needs are likely to increase significantly towards the end of life, so higher staffing levels are probably needed. It is a good idea to anticipate this and plan ahead. It is also important that staff know exactly what to do immediately after the death. Who should be contacted? (This should include a doctor to certify the death; family and friends; service managers; and a funeral director who will come and take the body away; and perhaps a religious leader.) If the person dies at home, what will happen with their body? Would people like them to stay in their bed for a while after they die, so friends and staff can say goodbye? (This is perfectly possible when someone dies at home and should also be possible if they die in

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hospital.) If so, who will straighten up and perhaps also wash the body? These are practical questions that cause distress and worry (and possibly regret afterwards) if they are not thought of beforehand.

8.5.7 Bereavement Support Bereavement has a huge impact on people’s lives. It can also have a significant impact on people’s mental health. Many people with learning disabilities face significant bereavements, including the death of a parent, for example. The death of a housemate or friend will not only bring grief for the person who has died but can also trigger painful memories of previous losses. Grief is often under-recognised in people with learning disabilities. They may express grief atypically (for example, withdrawal, anger, or usual behaviour) or late—even years later. All staff should be familiar with the way in which people with learning disabilities might express grief. They can help by talking about the people who have died and looking at photographs; or by facilitating rituals (such as planting a tree, visiting the grave, or lighting a candle). Involving people in the rituals immediately after death (such as visiting the body and taking part in the funeral) is a good start. Be careful to use the person’s own vocabulary about death, and to avoid euphemisms. ‘We lost Victoria’ or ‘She has gone to a better place’ could be very confusing. Support should also be available for care staff, who can be hugely affected by the death of someone they cared for. Managers should facilitate and encourage staff to talk about this in teams; enable them to attend the funeral; and be sensitive to staff stress. Staff may not ask for help or support, but this does not mean that it is not needed. Some families may want to stay in contact with the staff and the organisation who supported their relative. Consider getting in contact with them at times of anniversaries, or perhaps inviting them for a remembrance gathering (even if it’s just tea with the person’s favourite cake and an opportunity to share memories). It is OK to be creative in supporting the grieving process!

8.6

Summary and Conclusions

Supporting people with learning disabilities at the end of life can be a daunting prospect. There are so many things to think about and to get right—which means that there are also many things that can go wrong. Good palliative and end-of-life care needs to involve many people, who all need to work together and contribute their skills. Healthcare professionals, who hold expertise in providing treatment, care and support for people at the end of life, will need the experience and knowledge of carers and families in order to be able to ‘translate’ their skills to suit the needs of people with intellectual disabilities. Ensuring the right physical care is crucial and should be a priority; someone who is in pain or discomfort will not be able to focus on much else. Providing emotional, social and spiritual support is also important. It is likely that care needs to be highly individualised, so

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everyone needs to be flexible and prepared to do things differently. In order to ensure that the person with intellectual disabilities is kept at the centre of care, listening to and involving carers is essential. It is also important to communicate openly with everyone, including the person with learning disabilities themselves, in a way that takes account of their communication ability. This will ensure that decisions are made, and care is provided, in accordance with the person’s needs and preferences. Supporting people at the end of life is demanding and often difficult, but the care is as good as it can be, it can be hugely rewarding. Difficult deaths are remembered for a long time, but so are ‘good’ deaths. It is important to get it right.

Reflective Space

We have thought a lot about Victoria’s story in this chapter. How might this relate to your work? Doctors sometimes use the ‘surprise question’ to help identify whether someone is nearing the end of life. The question is: Would you be surprised if this person were to die in the next year? Think about the people you support. Is there anyone for whom your answer would be, No, actually, I wouldn’t be completely surprised. If so, answer the following reflective questions with that person in mind. If not, you can think of any other person with learning disabilities when trying to answer these questions. 1. Involving the right services. What services are already involved in this person’s care and support? If they needed end-of-life care, who else would need to be involved? Do you know how to find them? 2. Managing pain and other symptoms. How does this person usually express pain? How would you know if they were nauseous, or constipated, or dizzy? You could download the DisDAT tool (see the Resources Section) and complete it for the person, together with other team members and perhaps their family. It will be a useful thing to have, even if they will live many more years! 3. Providing emotional, spiritual and social support. What makes a good day for this person? What makes a bad day? What do you think this person’s emotional, spiritual and social support needs might be during the final months of their life? 4. Involving family and friends. Who is the person currently close to? Who are they in contact with? Who are their friends? How would you ensure that these bonds could continue if the person was weaker and more frail? Are there any relationships that could (or even should) be re-established or strengthened? 5. Advance care planning. Try to imagine what the person would want to happen if they were as ill as Victoria was. Where would they like to be

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cared for, and by who? Who would they like to have around? Is there anything on their ‘bucket list’? What would they like to happen after they die (e.g. funeral wishes)? Who would they like to make choices for them if they themselves can no longer make them? Who should be in their ‘best interest’ meetings? It is possible to start these conversations well before someone is dying, but this needs sensitivity. Next time there is a death in a ‘soap’ on TV, or a celebrity dies, could you use that to start conversations with a person with learning disabilities? 6. Death. How confident would you be if you were supporting this person on the day they died? What would you want to know? Are there policies and guidelines in your organisation that would help you? If you are not sure, see if you can raise this with your managers. 7 . Bereavement. How would you involve the person’s friends and family in the funeral? Think of one thing you could organise during the year following the death, to remember the person.

8.7

Victoria’s Legacy

Let’s give the final words to Victoria’s family and the people who supported them. They show us that death and dying is hard, but it does not have to be scary. If everyone works together and is well supported, and the person with learning disabilities is kept at the centre of care, it can be one of the most powerful and rewarding times. Victoria’s death left a deep impression on the people around her—she left a great legacy. Victoria’s staff team leader said this about Victoria’s death: ‘I’ve learned that supporting someone in their death is just, if not more, rewarding and important than supporting them in their life. I’ve also learned the meaning of a ‘good death’ which was a term I hadn’t really heard or understood before. I’ve learned that when it’s my time to go I hope to do so just like Victoria, in the comfort of my own bed with loved ones and fairy lights and music’. Her palliative care nurse specialist said: ‘It feels to me that Victoria was a pioneer. Some of us who were involved in her care had very little previous experience of taking care of such a vulnerable but simultaneously powerful person in the final stage of her life, so she was a great teacher who has helped prepare us to care for others in similar circumstances’. And her mother Jean said: ‘My daughter Victoria left an extraordinary legacy as a courageous and inspirational young woman, who made us realise what is possible for people with profound and multiple learning disabilities. She was able to make everyone who met her give her unconditional love; she brought out the very best in people, she made family and professionals work in a team. The amount of love, energy and drive that Victoria inspired around her was undeniable. She taught us patience, tolerance, and some understanding of what it was like to have such a

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profound disability, and how she made sense of the world, and in doing so we have worked hard to improve the lives and also the deaths of other people with learning disabilities’. Sources of Additional Information For more information on palliative, end-of-life and hospice care, see: • Marie Curie. (2019). What are palliative care and end of life care? https://www. mariecurie.org.uk/help/support/diagnosed/recent-diagnosis/palliative-care-endof-life-care. • World Health Organization. (2019). WHO Definition of Palliative Care. https:// www.who.int/cancer/palliative/definition/en/. Accessed 3 Jul 2019. The Palliative Care for People with Learning Disabilities (PCPLD) Network provides excellent resources, networking and learning opportunities for anyone involved in supporting someone with learning disabilities who needs palliative and end-of-life care. They give the ‘Linda McEnhill Award’ for best practice (see: Tuffrey-Wijne and Davidson 2018), which was won by Victoria Willson’s team in 2014. You can find a range of information and resources, as well as Victoria’s story (including photographs), on their website: www.pcpld.org. ‘Delivering high quality end of life care for people who have a learning disability’ (2018) is a resource produced by NHS England and the PCPLD Network, providing tips and resources for commissioners, service providers and health and social care staff. See: https://www.england.nhs.uk/publication/delivering-high-quality-end-oflife-care-for-people-who-have-a-learning-disability/ The Books Beyond Words series has books designed for people with learning disabilities, using only pictures. This can help people understand what is happening, ask questions and make sense of their own experiences, including emotions. Relevant titles include: Am I going to die? When Dad died. When Mum died. When somebody dies. See: https://booksbeyondwords.co.uk/ The ‘Breaking bad news’ website has information and training materials about how to break bad news for care givers of people with learning disabilities. There is also a book by Irene Tuffrey-Wijne (2013). See: http://www.breakingbadnews.org/ The Disability Distress Assessment Tool (DisDAT) was developed by St Oswald’s Hospice (n.d.). It is available at: https://www.stoswaldsuk.org/how-we-help/weeducate/education/resources/disability-distress-assessment-tool-disdat/ disdat-tools/. Information and resources about advance care planning can be found at: • North East Lincolnshire NHS Trust, St Andrew’s Hospice, and Care. “What if”: Celebrating my life. End of life care plan. https://pcpld.double-click.co.uk/wpcontent/uploads/What-If-Celebrating-My-Life-Plan-EOL-2013.pdf • Calderstones NHS Trust. When I Die. http://www.easyhealth.org.uk/sites/ default/files/when_i_die_1_0.pdf.

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• All-Ireland Institute of Hospice and Palliative Care. Glancing back, thinking forward: End of life care planning for people with intellectual disabilities. http:// www.professionalpalliativehub.com/resource-centre/glancing-back-thinking-forwardend-life-care-planning-people-intellectual. Professor Irene Tuffrey-Wijne’s website has information about her research and publications, films and a blog. See: http://www.tuffrey-wijne.com/

References Heslop, P, Blair, P, Fleming, P, Hoghton, M, Marriott, A, Russ, L. (2013). Confidential inquiry into premature deaths of people with learning disabilities (CIPOLD). Bristol: University of Bristol. http://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf. Accessed 18 Dec 2019. St Oswald’s Hospice. Disability Distress Assessment Tool (DisDAT). (n.d.). https://www.stoswaldsuk.org/how-we-help/we-educate/education/resources/disability-distress-assessmenttool-disdat/disdat-tools/. Accessed 29 Aug 2019. Tuffrey-Wijne, I. (2013) How to break bad news to people with intellectual disabilities: a guide for carers and professionals. London: Jessica Kingsley Publishers. Tuffrey-Wijne I, Davidson J. Excellence in palliative and end-of-life care provision for people with intellectual disability. Int J Palliat Care Nurs. 2018;24(12):598–610.

9

Staying Healthy Jackie Fletcher, Jill Parker, Jordan Smith, and Dave Robinson

9.1

Overview

This chapter explores a wide range of lifestyle and environmental factors which affect our health. How we behave and respond to these factors plays a significant role in our capacity to stay healthy and get the most from life. We consider how these factors impact on the lives of people with learning disabilities and look at potential strategies, approaches and activities for supporting them to develop healthy behaviours and lifestyles and secure their rightful access to services which assist them to live a healthy life.

9.2

Initial Reflections

This chapter is about staying healthy and the support that can be provided to people with learning disabilities to achieve the best possible health. Our life circumstances, the choices we make and the way we live our lives, along with the support we receive, all impact either positively or negatively on our health. Adopting a healthy J. Fletcher Quality, Public Affairs & Policy, Dimensions UK, Berkshire, England, UK e-mail: [email protected] J. Parker (*) Just Leaders, Stroud, UK e-mail: [email protected] J. Smith Health Equalities Lead, Dimensions UK, Berkshire, England, UK e-mail: [email protected] D. Robinson Health & Wellbeing, Dimensions UK, Berkshire, England, UK e-mail: [email protected] © Springer Nature Switzerland AG 2020 P. Heslop, C. Hebron (eds.), Promoting the Health and Well-Being of People with Learning Disabilities, https://doi.org/10.1007/978-3-030-43488-5_9

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lifestyle, with regular monitoring and support to make positive changes, can reduce the possibility of developing a range of long-term health conditions and help us get the most out of life for longer. Exercise 9.1 Self-Reflection

Draw a line down the middle of a piece of paper to create two columns. In the first column list the factors in your life that help you stay healthy. In the second column list the factors in your life that impact negatively on your health or put your health at risk. Think about which are the most important to you and identify your top three factors in each column. Looking at your lists you may realise that there are things that you would like to change in order to live a healthier life. What steps could you take to make that change? The factors in your lists are likely to include your lifestyle, behaviours, relationships, the resources available to you, the environment in which you live and the services you access. You may find that some things appear in both lists: for instance, you may stay fit by working out at the gym but have sustained a long-term injury as a result. As you think more deeply you may be surprised by the range of factors which are relevant to your health. Making lifestyle and environmental changes to improve our health can be a challenge, but it is often more difficult for people with learning disabilities because of the particular barriers they face. For example, they may find it more difficult to eat healthily if they are supported by people who themselves have a low awareness of what makes a healthy diet, or if they do not have access to information about nutrition in a suitable format.

9.3

Key Concepts

9.3.1 A Healthy Lifestyle A person with a healthy lifestyle is someone with the opportunity for secure housing and meaningful relationships, healthy behaviours, support to manage longterm conditions and who accesses preventative health services. In Chap. 1 we were introduced to the Dahlgren and Whitehead ‘rainbow model’ which sets out the relationship between an individual and the social and environmental factors that determine their health—the social determinants of health (The Health Foundation 2018). A healthy lifestyle is also influenced by the individual behaviours that promote good health (Khaw 2008) and access to services that prevent ill-health.

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9.3.2 Health Monitoring Health monitoring aims to help people live longer, healthier lives by offering health checks to spot the early signs of ill-health and support to reduce the risk of a range of conditions such as heart disease, diabetes and dementia.

9.3.3 Health Promotion Health promotion involves giving people the information and resources they need to increase control over and improve their health. An example would be promoting sexual health by sharing information about safe sex.

9.3.4 Managing Change in Relation to Health A key role of support staff is to encourage people to develop the knowledge, skills and confidence that underpin healthy habits. Health action planning is a key tool to support this, which we will consider later in the chapter.

9.4

Components of a Healthy Lifestyle

Your lists from Exercise 9.1, and your reading in Chap. 1, will illustrate to you that there is a complex, inter-relating set of components of a healthy lifestyle. These include: • • • • • • • • • •

Good quality housing in safe neighbourhoods. Warm, loving relationships and emotional well-being. Eating a healthy diet and drinking plenty of fluids. Keeping to a healthy weight. Taking regular exercise. Getting enough good quality sleep. Maintaining a good standard of personal hygiene. Stopping smoking and limiting alcohol consumption. Keeping a regular check on our health and managing long-term conditions. Making good use of preventative health services, such as inoculations and cancer screening.

Next, we will explore how each of these factors contributes to maintaining our health, how and why they can be more difficult for people with learning disabilities to attain and strategies we can apply to enable them to overcome the barriers to living a healthy life.

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9.4.1 Housing Housing is about more than bricks and mortar. Our homes are the places where we unwind, invite friends, eat together and share some of our most intimate moments. They are filled with our possessions. They are our refuge from the world and a reflection of the people we are. Consequently, good quality housing is a key building block for living a healthy life. Housing that is damp or in a poor state of repair can lead to physical health problems such as asthma, respiratory illnesses and heart disease. Unstable or poor-­ quality housing is also associated with stress, anxiety and depression. Research by Mencap (2011) found that nearly 20% of people with a learning disability known to local authorities lived in accommodation that needed improvement. This included one in three people living in registered care homes and one in four people living with family and friends. Housing can contribute to living a healthy life when it provides a secure base, is affordable and household members feel safe. It must also meet the requirements of occupants, including any necessary adaptations, and be located so that people have good access to their community, work and services. Where people with learning disabilities are in housing that does not meet their needs this, and the consequences for their health, should be raised and addressed through the social services review process.

9.4.2 Relationships and Emotional Well-Being Our personal relationships and broader social connections play a vital role in our feelings of psychological well-being and our physical health. Healthy relationships affirm us, bring us joy, help us deal with stress, support us in times of trouble and provide a sense of belonging and security. Conversely, American researchers (Holt-­ Lunstad et al. 2010) have found that loneliness and social isolation are as great a health risk as smoking and alcohol consumption and exceed the risk associated with other factors such as physical inactivity and obesity. People with learning disabilities face multiple barriers to developing friendships and intimate relationships and so are at increased risk of social isolation. They have often received inadequate education around sex and relationships and may have very limited opportunities to meet people. They may live in circumstances where there is a lack of privacy and where their choices about intimate relationships are restricted by others, even when they have capacity to make their own decisions. Social prescribing is an approach where people who are isolated, need support with their mental health or have complex social needs that affect their well-being can be assigned a link worker who will give them time to focus on what matters to them (The Kings Fund 2017). Link workers may support people to get involved in community groups which enable them to take part in activities, form new friendships and build peer support.

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While social prescribing is only available in some areas, people in many roles can be effective in getting alongside a person with a learning disability and giving them the space to consider what is important to them and the lifestyle changes they want to make to live a healthier and more fulfilled life.

9.4.3 Eating and Drinking Good nutrition and hydration are essential to living a healthy life. The nutrients in the food we eat support our capacity to carry out daily activities, protect and repair our cells and promote a healthy immune system. In 2018, an unpublished study was undertaken by a small group of social care providers to explore the nutritional value of what people with learning disabilities eat and drink in residential care and supported living settings (Unpublished 2018). Overall, the findings indicated inadequate levels of nutrition and hydration. Many people with learning disabilities are reliant on support to make informed decisions about eating and drinking and to maintain good dietary habits. Support staff should encourage people to plan their meals around The Eatwell Guide by Public Health England (see the Resources at the end of this chapter) which offers guidance about how much fluid we need and how much we should eat from each food group to achieve a balanced diet.

9.4.4 A Healthy Weight Maintaining a healthy body weight can reduce the risk of a wide range of conditions including stroke and heart disease, type-2 diabetes, several types of cancer, back and joint pain and mobility difficulties. People with learning disabilities are at increased risk of being obese due to a complex mix of lifestyle, environmental and biological factors. These include poorly balanced diets, low levels of physical activity, the effects of some genetic conditions and the side effects of some psychotropic medications. For people who are overweight, support should be available to exercise more and eat appropriate amounts of healthy food. Many people find that participating in a weight management programme is a helpful approach to reaching and then maintaining a healthy weight (Public Health England 2016a). Carl explains how a weight reduction programme worked for him.

Carl’s Story

My name is Carl and I’m a person with a mild learning disability. I’d like to share my experience of eating healthily and starting exercise. I had heard of schemes like Weight Watchers and I spoke to friends about starting it and one of them said to try Slimming World because they did it and

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it really worked for them. So, I started it and learnt lots of things about what foods were healthy and what foods to limit. It was also suggested to me that I do exercise at the same time as eating healthily, so I started to do 5 km runs. In the course of 2 years I went from 15 stone to 12 stone 7 lbs. I have now been vegan for 4 years and have managed to keep my weight between 12 stone 7 lbs and 13 stone 7 lbs because I keep eating healthily and doing exercise. When I am healthy, I feel confident, happy and I do things with people who are interested in health and fitness.

9.4.5 Exercise To stay healthy, adults need to do both aerobic and strength exercise. How much exercise you need depends on your age. We should all try to be active every day and break up long periods of sitting, which can affect our ability to metabolise fat and regulate blood sugar and blood pressure. According to NHS guidance (NHS 2019), every week, adults aged 19–64 should do: • At least 150 min of moderate aerobic activity such as cycling or brisk walking or 75 min of vigorous aerobic activity such as running and • Strength exercises on two or more days per week that work all the major muscles (legs, hips, back, abdomen, chest, shoulders and arms). Typically, people with learning disabilities have lower levels of physical activity than the general population. Dairo et al. (2016) reported that only 9% of people with learning disabilities had levels of physical activity that met the minimum recommended guidelines. However, there is an increasing focus on making opportunities to participate in sport more inclusive (Disability Rights UK 2019) and you should be able to find out what is available in your area through the local gym or sports centre.

9.4.6 Sleep Good restorative sleep is fundamental to everyone’s overall physical and mental well-being. It helps to regulate our mood, improve our memory and maintain our physical health. While we are asleep our brains are organising and storing our memories from the day before. Meanwhile, our bodies are growing muscle, repairing tissue and replenishing energy. Sleep problems are more common in people with learning disabilities than those without. Challenging behaviour, respiratory disease, visual impairment, psychiatric conditions, high blood pressure and using psychotropic, antiepileptic and/or antidepressant medication are all associated with sleep problems or a lack of sleep.

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Sleep is also important for good physical and mental health. The best sleep habits involve having a consistent routine which enables us to meet our sleep needs every night and feel rested when we wake up. Most adults need 7–9 hours sleep each night. Where a person with a learning disability has trouble sleeping without obvious cause, a good way forward may be to consider well-used strategies for a good night’s sleep, such as: • Encouraging the person to stop using electronic devices 2 hours before they go to sleep. • Minimising light and background noise and ensuring the room is at a comfortable temperature for sleep. • Supporting the person to try relaxation exercises if they are worried or anxious. • Avoiding caffeine, alcohol and high sugar foods late in the day. • Discouraging the person from napping during the day.

9.4.7 Personal Hygiene Maintaining personal hygiene, including oral care, is essential to our physical, emotional and social well-being. It helps us to prevent infection and odour and present a positive body image. However, a good standard of hygiene may be more difficult for a person with learning disabilities to maintain due to their capacity to develop and retain skills and/or the impact of any associated physical disability. Oral hygiene is especially important for people with dysphagia (difficulty chewing and swallowing) (Public Health England 2019). This is because they are at risk of inhaling food, drink and saliva into their lungs when swallowing. Aspiration of harmful bacteria from poor oral care can lead to life-threatening respiratory difficulties and chest infections. Handwashing after using the toilet, coughing and sneezing, emptying bins and before and after food preparation is essential to preventing the spread of many illnesses. People with learning disabilities may need support to establish an effective personal care routine and reminders to maintain it. This may be an area we find difficult to discuss, but we can help people by being clear and specific. Developing a pictorial plan with the person of their hygiene routine may by a helpful reminder for them to follow. We can make attention to hygiene more meaningful by connecting it to positive outcomes, such as staying well, looking and smelling good and feeling accepted by others. Where people need physical assistance with personal cleansing or oral hygiene, this should be provided as an essential component of maintaining their health.

9.4.8 Substance Misuse, Smoking and Alcohol The use of illegal substances, alcohol and tobacco can result in significant long-term harm to our health. In order to keep the health risks of drinking to a low level, the NHS

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(NHS 2018) advises that adults stick to a limit of 14 units of alcohol per week. This is the equivalent of six pints of average-strength beer or ten small glasses of low-strength wine. Smoking is one of the main causes of coronary heart disease, so quitting smoking is the single best thing that a smoker can do for the health of their heart. Public Health England (2016b) identified that people who have borderline or mild learning disabilities, young males and people who have mental health problems are more likely to misuse substances, including alcohol, than others. The report also noted that substance misuse has negative health and social effects on people with learning disabilities, including: • • • • • • • • • • •

Deterioration in physical and mental health. Alienation or social difficulties. Cognitive deficits. Challenging behaviours. Risk-taking behaviour, including suicide. Increased epileptic seizures. Inpatient admissions. Greater risk of offending behaviour. Being vulnerable to exploitation. Financial impact, including potential loss of housing. Effects of stopping prescribed medication to be able to drink alcohol.

While only a small proportion of people with learning disabilities are known to have substance misuse problems, they are a doubly disadvantaged group and there is difficulty in finding services to meet their needs. While there is a lack of evidence-­based guidance, the following approaches may be helpful (Public Health England 2016b): • • • • • • •

Collaboration between addiction services and learning disability teams. Taking a personalised approach that tailors support to the individual. Using a one-to-one approach rather than group work. Providing information in a format that meets the person’s communication needs. Supporting the person to widen their social network. Involving the person’s family in treatment. Helping the person access support services such as bereavement and sexual abuse counselling to address the reasons behind their substance misuse.

A support worker accompanying a person with a learning disability to an annual health check should encourage the person to discuss their use of illegal substances, alcohol and tobacco with the GP.

9.4.9 Managing Long-Term Conditions Many of us lead full and active lives while also managing one or more long-term conditions through a mixture of self-care and support from health services.

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Careful management of our health conditions enables us to remain as fit and well as possible and to enjoy life. Many people with learning disabilities have more than one health condition. Some may have an associated physical disability such as cerebral palsy that affects their movement, posture and coordination. In these circumstances good postural care is essential to preserving the person’s body shape and muscle tone. Failure to provide postural care will result in a deterioration of the person’s body shape resulting in pain, further health problems and increased physical dependence. Joe’s example highlights this. Joe’s Story

Joe has cerebral palsy, resulting in scoliosis (curvature of the spine) which affects his breathing. Joe’s physiotherapist recommended a sleep system to prevent further deterioration of his spine, to support some degree of correction and to maintain his airway. The sleep system is a set of foam blocks (designed by Simple Things Work) which are positioned around Joe’s body and result in his body being as straight as possible when lying down. He has a pictorial plan of how to correctly position the blocks. He started using them for short periods during the day and the time periods were increased slowly as he became comfortable with using them for longer. Eventually he was able to use the blocks for long enough to use them at night. Joe also uses a wheelchair but finds that the usual types of head support do not keep his head in an upright position. Therefore, the physiotherapist introduced a foam tube which supports his neck and wraps around his wheelchair; this helps to protect his airway. As a result of good postural care Joe has had fewer chest infections and experienced less coughing and wheezing. He has maintained his level of movement and not experienced any further deterioration in his posture.

9.4.10 Accessing Preventative Health Services Preventative healthcare aims to prevent disease or illness occurring, and to identify and detect disease before any symptoms of it are noticeable. Preventative health services include check-ups, cancer screening and immunisations. Chapter 5 covers access to preventative health services in more detail.

9.5

Supporting the Best Possible Health

It is often the case that people with learning disabilities can encounter social, emotional, practical and environmental barriers in finding, starting and maintaining participation in healthy activities. These may include having previously lived within negative cultures around healthy living, problems accessing facilities, few suitable

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local activities being available, a lack of information about local activities that a person may like to take part in, poor self-confidence or low self-esteem. Encountering these kinds of barriers can lead to feeling a lack of control and becoming disempowered, which can negatively affect a person’s motivation in seeking to live a healthier lifestyle. Supporting people to plan and organise structured exercise programmes has generally been found to improve the health of adults with learning disabilities (Calders et al. 2011). Motivated support staff can really help with this by promoting a positive ‘can do’ attitude towards healthy living, exercise and activity, and supporting the person to find the kind of activities that they are best suited to and that are available in their area. Support staff and carers with a good working knowledge of the locality, people and resources, can empower people with learning disabilities to take responsibility for their own health and lifestyle, and help the person to exercise more control over moving towards a healthier lifestyle. Ideally, paid supporters should receive training in the type of effective interventions and support that can promote good health and prevent common health issues such as obesity or constipation. Supporters simply role modelling a healthier lifestyle with increased levels of activity and a good healthy diet can be a great start in helping to inspire and motivate the person that they are supporting to do the same. Careful matching of supporters to the people needing support can also be a great help. Where two people have the same interests, enjoy the same things and possibly even have the same goals, they can work on them together, and the experience can be much more positive, enjoyable, rewarding and productive for both! We all know that many things in life can seem easier, more achievable and less daunting, if we buddy up with a like-minded person for the journey. The attitudes of others can be vital in encouraging participation in any activity, especially when people may have had poor or negative experiences in the past, and may have lost the confidence to make changes in their own life. Suggesting a new activity to a person (with learning disabilities or not) can be done in many different ways, and can lead to many different outcomes. A genuine enthusiasm for an activity can be infectious, and can help to get another person moving, or to carry a person along when their own motivation or enthusiasm dips. On the other hand, if an activity is suggested with a lack of enthusiasm or within an air of negativity, it becomes much easier for a person to say ‘no’ or ‘another time’ or to just keep on doing the things that they have always done. Shields and Synnot (2016) stress the importance of positivity from those around the person who is trying to live a healthier lifestyle, and suggest that whether or not peers have a positive and accepting attitude towards the physical activity of people with learning disabilities is key. Usually, it is a good idea to start small and make sure to keep things manageable and enjoyable. Aiming too high or having targets that are unattainable in

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the short term can be very unmotivating. Identifying small realistic goals that can be achieved (and celebrated) in a relatively short timescale can be very motivating indeed. Increased confidence is built upon a series of successes (and lack of confidence on a series of failures). It is a good idea to support a person to identify initial health targets that can be a ‘quick win’ for that person, whether that be around taking more exercise, having a healthier diet or participating in new activities. We can then celebrate the achievement and plan the next target together. Some people prefer to engage in physical activity alone, whereas others feel more motivated when they are a part of a group of people who are doing the same thing or who have the same kind of goals. Some people like competitive activities and some people really don’t. It is possible that some people with learning disabilities may find that they become more motivated and engaged in physical activities if these activities generate more opportunities for inclusion and social involvement. Also, being in an environment where we can see the achievements of others can be very motivating. Supporters who understand from good support planning generally, what works and what doesn’t for the person they are supporting, will have a greater chance of successfully finding the right pathway to a sustained healthier lifestyle for that person. While participation in group exercise is motivating for many people, a person who is new to an activity could be easily overwhelmed by it, and it could be that making a start on a new activity on an individual basis may allow the activity to be tailored specifically for that person’s particular needs at that particular time. This could of course lead to more inclusive activity further down the line if the person so desires. Most people have access to a wide range of healthy activities, whether they be around taking exercise or keeping a healthy diet. We often try out lots of activities before choosing one to stick with, and of course our preferences can change over time as we get bored with a particular activity, or if our interests change. The key here is the availability of choice. Sometimes, people with learning disabilities may not have had the same kind of access to the range of choices available to other people, or the range of activities that they think are available to them may actually be quite small. Supporting a person to increase the visible choices that they have available is an essential part of effective support planning towards a healthier lifestyle, and presenting these choices to a person with learning disabilities in a way that they can understand is crucial in enabling them to make the choice that is right for them. This will mean finding out about, and using, the person’s preferred communication methods. Finally, probably the best way of making sure that any lifestyle change or new activity is maintained, is making sure that it is, and remains, enjoyable and fun. Mark’s story below illustrates the approaches taken by his support network to help him to become healthier.

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Mark’s Story

Mark had been unwell for a while with shortness of breath, difficulty walking and was seriously obese. His GP and carers had been trying to encourage Mark to lose weight, but despite advice and support, Mark remained at the same weight with only small fluctuations. Mark stated he didn’t mind being bigger and didn’t think his weight was affecting his breathing or mobility. When asked what his dreams and wishes were, Mark was very clear that his main dream was to be able to fly to America to see his brother. Mark’s size meant he could only fly if a larger seat was purchased. His new health action plan was focused on what was needed to help him achieve his dream. Being well enough to fly included a goal of losing weight, improving his stamina and strength and increasing his mobility. All those supporting Mark (his family, his carers, his GP, the healthy eating club) changed the way they talked to him. Instead of talking about him losing weight, they talked about his goals and his dreams. For example, instead of setting a target of losing 4 stone, they set a target of feeling well enough to go to America within 12  months. Mark joined a healthy eating club and was prescribed gym access by his GP. His brother phoned regularly to encourage him and talked about all the things they might do when he visited. Mark was encouraged by this approach and took pleasure in telling people how much time he had increased on the bike at the gym, and how much weight he had lost. He also started to make serious plans for his trip by opening a savings account. As well as a monthly saving plan, he deposited money he had saved by not buying extra food. Ten months after he started working towards his dream, Mark flew to America where he had a holiday of a lifetime. By that time, he had lost 4½ stone. Following his return, Mark maintained his new healthier lifestyle, his next dream was to marry his long-term girlfriend Louise.

9.6

Summary and Conclusions

In this chapter we have considered a range of interrelating individual, social and environmental factors which can impact on our health. How we respond to these, the behaviours we develop and the support and services we receive play a determining role in our ability to live a healthy life. People with learning disabilities face multiple barriers to creating the circumstances and developing the behaviours that will help them stay healthy. We have identified some key areas and put forward a range of strategies that can be used to support them to overcome these disadvantages through support to make lifestyle changes. Staying healthy is fundamental to

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our ability to get the most from life. In the words of Mahatma Gandhi, ‘It is health that is real wealth, not pieces of gold and silver’.

Reflective Space

Repeat Exercise 9.1 with a person with a learning disability in mind. As before, draw a line down the middle of a piece of paper to create two columns. In the first column list the factors that help the person to stay healthy. In the second column list the factors that impact negatively on their health or put their health at risk. Ask the person about which are the most important to them and tick their top three factors in each column. Now looking at the lists ask the person if there are things they would like to change in order to live a healthier life. Consider the strategies we have explored in this chapter. What steps can you take or how can you adjust the support you offer in order to help them make the changes they want? Source of Additional Information Books Beyond Words has co-created wordless stories for people who find pictures easier than words so that they can explore and understand different aspects of health including common physical and mental illnesses, cancer screening, healthy living and how services work. The stories can help individuals directly by reading the printed books or assist clinicians to elicit information, check someone’s understanding, explain a procedure or support decision-making through the BWStoryApp, a searchable communication tool. See https://booksbeyondwords.co.uk/ Accessible information about a wide range of health issues is available at www. easyhealth.org.uk Accessible information about healthy eating and exercise, including an accessible app are available at www.downs-syndrome.org.uk The Public Health England Eatwell Guide is available at: https://www.gov.uk/ government/publications/the-eatwell-guide

References Calders P, Elmahgoub S, Roman de Mettelinge T, Vandenbroeck C, Dewandele I, Rombaut L, et al. Effect of combined exercise training on physical and metabolic fitness in adults with intellectual disability: a controlled trial. Clin Rehabil. 2011;25(12):1097–108. Dairo YM, Collett J, Dawes H, Oskrochi GR. Physical activity levels in adults with intellectual disabilities: a systematic review. Prev Med Rep. 2016;4:209–19. https://doi.org/10.1016/j. pmedr.2016.06.008. Disability Rights UK. Get yourself active. 2019. http://www.getyourselfactive.org/. Accessed 17 Nov 2019. Holt-Lunstad J, Smith TB, Layton JB.  Social relationships and mortality risk: a meta-analytic review. Utah: Brigham Young University; 2010.

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Khaw KT. Combined impact of health behaviours and mortality in men and women: the EPIC-­ Norfolk prospective population study. PLoS Med. 2008;5(1):e12. https://doi.org/10.1371/journal.pmed.0050012. Mencap. Housing for people with a learning disability. 2011. https://www.glh.org.uk/wp-content/ uploads/2013/04/2012.108-Housing-report_V7.pdf. Accessed 18 Dec 2019. NHS. Alcohol units, alcohol support. 2018. https://www.nhs.uk/live-well/alcohol-support/calculating-alcohol-units/ Accessed 19 Dec 2019. NHS.  Exercise: physical activity guidelines for adults. 2019. www.nhs.uk/live-well/exercise/. Accessed 8 Jul 2019. Public Health England. Making reasonable adjustments to obesity and weight management services for people with learning disabilities. 2016a. https://www.ndti.org.uk/uploads/files/ Obesity_RA_report_final.pdf Accessed 19 Dec 2019. Public Health England. Substance misuse in people with learning disabilities. 2016b. https:// www.gov.uk/government/publications/substance-misuse-and-people-with-learning-disabilities/substance-misuse-in-people-with-learning-disabilities-reasonable-adjustments-guidance. Accessed 18 Dec 2019. Public Health England. Oral care and people with learning disabilities. 2019. https://www.gov. uk/government/publications/oral-care-and-people-with-learning-disabilities. Accessed 18 Nov 2019. Shields N, Synnot A.  Perceived barriers and facilitators to participation in physical activity for children with disability: a qualitative study. BMC Pediatr. 2016;16:9. The Health Foundation. What makes us healthy? An introduction to the social determinants of health. 2018. https://www.health.org.uk/sites/default/files/What-makes-us-healthy-quickguide.pdf. Accessed 18 Dec 2018. The Kings Fund. What is social prescribing? 2017. https://www.kingsfund.org.uk/publications/ social-prescribing. Accessed 17 Nov 2019. Unpublished. Social care providers food and drink pilot. Anecdotal evidence from Voluntary Organisations Disability Group (VODG). 2018. See: https://www.vodg.org.uk/news/ pilot-week-for-the-vodg-food-and-drink-audit/

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Sue Turner, Anna Marriott, and Beth Richards

10.1 Overview ‘Health is everybody’s responsibility. Whether you have learning disabilities or not you need information you can understand. This must be accessible. Like everybody else, people with learning disabilities should get information about staying healthy throughout their lives. Like everybody else, people with learning disabilities will want information when they get ill. This is needed before, during and after treatment, whether they go to hospital or not. Like everybody else, if someone with learning disabilities has a health problem the important people in their life will also need information about this. This means people who are paid to support them, their family members and friends. Health is everybody’s responsibility.’—Beth Richards, co-­ author of the chapter. This chapter is about accessing information about a person’s own health or that of the people you support. It has a different structure to the other chapters and covers people’s rights to accessible information and resources, things to think about when searching for advice, where resources can be found, how resources should be used, co-production and resources, and resources for when things go wrong. The chapter draws on the experiences of The Misfits, a theatre group of people with learning disabilities who have made films about the health of people with learning disabilities.

S. Turner (*) · A. Marriott National Development Team for Inclusion, Bath, UK e-mail: [email protected]; [email protected] B. Richards Norah Fry Centre for Disability Studies, School for Policy Studies, University of Bristol, Bristol, UK © Springer Nature Switzerland AG 2020 P. Heslop, C. Hebron (eds.), Promoting the Health and Well-Being of People with Learning Disabilities, https://doi.org/10.1007/978-3-030-43488-5_10

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10.2 T  he Rights of People to Have Accessible Information and Resources It is not only obvious that people need information in a format that they can understand, it is also a legal obligation. The Accessible Information Standard described in Chap. 2 says that by law all organisations that provide NHS care or adult social care must make sure that disabled people get information that they can access and understand. Under the Equality Act 2010, public sector organisations have to make changes in their approach or provisions to ensure that services are accessible to disabled people as well as everybody else. Information about the Equality Act can be found at: https://www.gov.uk/guidance/equality-act-2010-guidance The duty to make these ‘reasonable adjustments’ is ‘anticipatory’, meaning that services should think in advance about what support a person might need, rather than just respond to difficulties as they emerge. Further information about the duty to make reasonable adjustments can be found at: https://www.gov.uk/government/publications/reasonable-adjustments-a-legal-duty/reasonable-adjustments-a-legal-duty and in Chap. 5. An important aspect of accessing services is getting the information you need about them in a way you can understand. One reasonable adjustment that services should be making is providing accessible information. Exercise 10.1 Self-Reflection

Can you think of an example of reasonable adjustments you have noticed when supporting someone with learning disabilities to access information? What difference did the reasonable adjustment make to the individual? Can you think of a situation where reasonable adjustments were not put in place, and what this meant for the person with learning disabilities?

10.3 Searching for Advice Many people turn to the internet when looking for advice and information about health. There is a lot of information available, but some of it is not good quality, and the amount of information available can be confusing. So, how do you know if the information you find is reliable? One way is to look at the source of the information; where has it come from? The Misfits were aware that not all information on the internet is reliable, with one person saying it was important to him to get information from “official sources, from an actual medical service so I know I am on the right track”. It can be difficult to judge if something is an official source though and someone acknowledged “some of the information is good, some of it is bad. It can be difficult to sort out”. NHS England provides a wealth of information through their website, and Public Health England has information on the Gov.UK website. However, a lot of this

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information is not in easy read and may not cover issues relating specifically to people with learning disabilities. Searching for information can also be difficult if you are not sure what is actually available. When searching for information, it is therefore important to think about your ‘search terms’. For example: ‘annual health checks and people with learning disabilities’ rather than just ‘annual health checks’ or just ‘learning disabilities’. Sometimes, even if the search term is accurate it is important to be aware that the internet will put other options (often sites selling goods or services) first. For example, a search for Healthwatch, the independent national organisation for people who use health and care services, brought up ‘HealthWatch Official’ site and ‘Health Watch Official’ site (both of which are selling things) before the actual Healthwatch site. Information can become out of date, if, for example, there are changes to the law, or new advice has been issued, and the internet may not always offer you the most recent version. Therefore, it is important to look at the date of the information, and if it is quite old, check to see if there is a more up-to-date version. Weblinks in other documents can also become out of date when the originating organisation updates their website. In these cases, it is worth searching the organisation’s own website, as the information is likely to still be there, even though it is in a different place. The range of resources available can make it easier to find something that makes sense to the individual. Some people prefer video clips, some prefer easy read with photographs or pictures. You may need to personalise the resource for the individual and some websites provide templates you can use for this. For example, NHS Lanarkshire has a number of templates and tools to create personalised letters. See: http://www.healthelanarkshire.co.uk/letter-templates It is always worth looking at what is out there first, even if it needs adapting, rather than starting from scratch.

10.4 Where to Find Resources and Get Advice Some websites are easier to search than others. NHS England has a website with a section dedicated to information about, and to an extent for, people with learning disabilities. At the time of publication this could be found at: https://www.england. nhs.uk/learning-disabilities/ Public Health England also has a lot of information about people with learning disabilities, but you have to search the GOV.UK website as it is not all in the same place. However, putting in ‘Public Health England learning disabilities’ now takes you to a webpage which includes: • Data on people with learning disabilities (the learning disability profiles and health and care data sets). • Summaries of information about specific health inequalities. • A link to guidance on reasonable adjustments. • A link to a study and report on the use of psychotropic medication. • Information on the Autism Self-Assessment framework. • Guidance for social care staff. The link to the webpage is: https://fingertips.phe. org.uk/profile/learning-disabilities

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The Reasonable Adjustment Guides are for specific service areas and conditions and include links to further resources. Many of the resources are in accessible formats including easy read and film clips, although please be aware that weblinks within this type of document can sometimes become out of date. The guidance for social care staff includes the Health Charter for social care providers and a number of fact sheets on health issues for people with learning disabilities such as health checks and pain management. The fact sheets also include links to presentations that can be used for staff training purposes. However, if you want accessible information on screening tests for people with learning disabilities who are going to become parents, you need to go to: www.gov. uk/government/publications/screening-tests-for-you-and-your-baby-easy-guides There are eight easy read guides which explain the screening tests offered during and after pregnancy including screening for thalassemia and sickle cell disease. Some websites are dedicated to providing accessible information for people with learning disabilities. Easy Health is perhaps the best-known example and includes a wealth of information in easily searchable categories. See: http://easyhealth.org.uk/ Picture of Health is another example. See: http://www.apictureofhealth.southwest. nhs.uk/ This is a repository of accessible information collated across the South West of England in 2014. There are also websites dedicated to particular health topic areas. Seeability: https://www.seeability.org/ is a good example. This includes information for children and adults with learning disabilities, their supporters and eye care professionals. The website includes a database of optometrists and dispensing opticians who have shared information on their services for people with learning disabilities and given examples of the reasonable adjustments they can make. Information includes wheelchair access into the practice and examining room, accessible toilets, extended appointments, eye tests split into separate appointments, and disabled or blue badge parking nearby. Many local health and social care websites will have information specifically about local services for people with learning disabilities including easy read information. For example, in Gloucestershire the Health Facilitation team, as well as having information about the team, have easy read information covering health, mental health, team leaflets and other useful information such as hospital passports and health action plans. See: http://www.2gether.nhs.uk/our-teams-and-services/ health-facilitation-team/ Health facilitators, primary and acute care liaison nurses and social workers can all help with accessible resources and advice. For example, one of The Misfits told us that when she was due to have a heart operation, a nurse visited her at home and gave her a DVD about someone with learning disabilities going into hospital to have open heart surgery. She hadn’t known what to expect and found this helpful. She said it was easy to understand and the nurse left it with her so she could watch it again. As there was a lot to take in, she learnt more when she watched it a second time, so this was useful. Despite there being some websites dedicated to providing accessible health information these are not always well known, by either health professionals or

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people with learning disabilities and their supporters. Although the Misfits provide training to health professionals, none of the members we spoke to said they would know how to find easy read information about a specific health problem. They were more likely to ask family members or go to the GP surgery or the pharmacy.

Exercise 10.2 Looking for Resources

Provider organisations also produce easy read information and resources. Look at three provider websites and see what information about health you can find that is in an easy-to-read format. You might want to look at providers who provide services in your area. See how much information you can find on health that might help you in supporting people with learning disabilities. Were you surprised at what you found? Were the websites very different, and if yes, why might that be? The Choice Forum has been running since 2000 and is an open access forum for people who want people with learning disabilities to have a better life. It is free to join. Members include people with learning disabilities, parents, friends, relatives, people working in the field, national and local policy makers, service providers and commissioners. Members can ask questions, exchange knowledge, experience and information, resources, discuss concerns and get support. For more information see: www.choiceforum.org/ Learning Disability England is a membership organisation made up of people with learning disabilities, family members, professionals, allies, and organisations of any kind that share their aims. At the time of publication, it cost £12 a year for individuals to join (2019 prices). There are regular newsletters that include links to new resources. Self-advocacy groups often provide training and information on healthy living and sometimes on first aid and what to do in an emergency. Some of the Misfits had had first aid training and talked about how important it was to know what to do if someone had a seizure. Self-advocacy groups also develop their own resources, sometimes in partnership with local professionals. Three examples are included below. ‘Get Checked’ Films

In Gloucestershire the Clinical Commissioning Group (CCG) wanted to develop some films about important health issues for people with learning disabilities, as part of their overall strategy for reducing health inequalities. To do this, they worked in partnership with the provider trust in the area, the 2gether NHS Foundation Trust and a local user-led organisation, Inclusion Gloucestershire. Inclusion Gloucestershire have a drama group ‘Dramatic Change’, and the Foundation Trust worked with them to develop aims and

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objectives for the films as well as identifying some health professionals to take part. The films are introduced by people with learning disabilities who also interview the health professionals. The films were signed off by the Health Action Group. The films cover medication management, mental health, diabetes, epilepsy, audiology, the dentist, the optician, stay well (about Annual Health Checks), going to the emergency department and the Learning Disability Hospital Liaison Team, and can be viewed at: https://www.youtube.com/channel/UCPtMb2HMGTpHOt5ijpRiGrA

Working in Partnership—Making the Film ‘Health is Everyone’s Responsibility’ with the Misfits

The Misfits Theatre Company are a theatre and social group led by people with learning disabilities. In 2017, NHS England asked the National Development Team for Inclusion and the Misfits Theatre Company to work together to produce a film aimed at social care providers, along with some guidance to improve the uptake of Annual Health Checks by people with learning disabilities. NHS England gave us a list of key messages that they wanted the film to convey, such as: • The importance of being on the GP learning disability register. • Needing to be on the register to get a health check. • What a Summary Care Record was and why it is important. These messages needed quite a lot of careful explanation, and consideration of how to get the information across in an accessible and interesting manner. We had to think about what the proposed audience may or may not understand, and what could reasonably be included in a short film without overloading it with information. As this film was aimed at social care providers, we also wanted to make sure the messages were right for them, so at an early stage we had a meeting with provider representatives as well as the NHSE commissioner to check we were on the right track. The film-maker was also there which was helpful as he had worked with the Misfits before. He knew their strengths and was also able to keep us on track about what was and was not possible. Making this film was not an easy task for anyone, but the Misfits were able to do it because of the way they work, which is not to a script, but by trying out different scenarios until they get something that makes sense and is entertaining as well. View the film at: https://www.youtube.com/watch?v=p4T9QrUchTU&t=2s The guidance can be downloaded from: www.ndti.org.uk/resources/publications/better-health-for-people-with-learning-disabilities For more information about the Misfits see: https://misfitstheatre.com/

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An Example of Co-Production in Practice—the Skills for People Courses About Mindfulness

Mindfulness for Life is a programme run by Skills for People, a charity working across North East England. The programme started in 2015 when two staff from Skills for People attended an 8-week mindfulness-based stress reduction course and started working with a local clinical psychologist and expert in mindfulness from Northumberland, Tyne and Wear NHS Foundation Trust. They wanted to explore how the course could be adapted and delivered in a more flexible and accessible way to people with learning disabilities. Mindfulness is a way of training the mind so that our attention stays in the present. Regular practice can help us to feel calmer and less stressed. It also teaches us to be kind to ourselves and others. This is particularly important for people with learning disabilities who experience significant health inequalities including discrimination, but who are less likely to have either the support or the skills to cope with the difficulties of life. Not surprisingly, many people with learning disabilities experience mental health problems. A growing body of evidence suggests that mindfulness can be helpful to people with learning disabilities and their supporters (Chapman and Mitchell 2013; Hwang and Kearney 2013). Since 2015, the Mindfulness for Life programme has been rolled out across the North East and Cumbria, reaching over 300 people. Not only have many attendees gone on to maintain and support their own practice through weekly sessions, they are now central to the delivery of the course, and have become an essential part of a hub promoting mindfulness across the North East and Cumbria by: • Leading mindfulness meditations and giving guidance to others about what helps to support and maintain practice. • Supporting people who wish to be part of the Newcastle-based practice group using IT such as Zoom, from either their home or another practice session. • Making a library of mindfulness-based films that people can watch and refer to, to help keep their own practice going from the comfort of their own home. • Contributing to the design of the course content and the accompanying adapted resources. • Being an inspiration to other people with learning disabilities, their supporters and the wider mindfulness community, who can now follow their journey by watching their Mindfulness for Life film (see below). • Spreading the word through keynote speeches at conferences. Family carers and supporters who accompany people on the courses report they have noticed a difference in themselves too. Benefits include being better able to manage stress in their personal and work life and feeling better able to

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offer compassionate care to those whom they support. Perhaps it is not surprising that an approach based on our common and shared humanity has benefits for us all. To find out more visit the Mindfulness for Life hub see: http://skillsforpeople.org.uk/groups-courses/courses/mindfulness/mindfulness-hub/ To watch the Mindfulness for Life film see: https://www.youtube.com/ watch?v=v1fl7gqKYRQ For more information about Skills for People see: http://skillsforpeople.org.uk/ For more information about Mindfulness see: https://www.nhs.uk/conditions/stress-anxiety-depression/mindfulness/ The resource hub can be accessed at: http://skillsforpeople.org.uk/groupscourses/courses/mindfulness/mindfulness-hub/

10.5 Resources for When Things Go Wrong Unfortunately, people with learning disabilities and their families do not always get good care and support from services, and need clear, accessible information about what to do when things go wrong. Members of The Misfits said that even when things go wrong several times, they were not always keen to make a complaint. They also said they would not know how to do this at a GP surgery but they thought that at a hospital they would speak to the ward nurse or get help from the acute liaison nurse. NHS England have produced some resources for people with learning disabilities and families about what to do when this happens. They are called ‘Ask Listen Do’. Although they are produced by NHS England, they give advice about what to do if people are not happy with health, social care or education services. They set out what to do if people want to give feedback about a service, raise a concern or make a complaint. They also give advice about what to do if people are not happy with the way the concern or complaint was dealt with. There is a form that people can use if the service does not provide an easy read form. The resources can be downloaded from https://www.england.nhs.uk/learning-disabilities/about/ask-listen-do/people-information/ The webpage has a film for people with a learning disability, autistic people, families and carers, and some blogs from people with first-hand experience of raising concerns. The blogs include some ideas about how to have better conversations between service recipients and professionals. The Parliamentary and Health Service Ombudsman has published some accessible information about what to do to make a complaint about the health service or other government organisation. The Ombudsman makes final decisions on complaints that have not been resolved by the NHS or other government organisations.

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There is an easy read leaflet and Service Charter, a video and some easy read posters. The information can be found at https://www.ombudsman.org.uk/making-complaint/before-you-come-to-us/complain-change/information-for-peoplelearning-disability-Easy-Read With regard to making a complaint about adult social care services, some information can be found at the following websites, but it is not in easy read: https://www.citizensadvice.org.uk/health/nhs-and-social-care-complaints/ complaining-­about-social-care-services/who-you-can-go-to-when-you-have-aproblem-with-an-adult-social-care-service/organisations-that-can-help-you-make-a -complaint-about-adult-social-care-services/. Exercise 10.3 What Makes a Good Resource for You?

Think of an example of a good resource you found while reading this chapter. What made it good? How can you use this resource to improve access to services for people with learning disabilities in the future?

10.6 Summary and Conclusions Public services must provide information in accessible formats and make reasonable adjustments to their services so that people with learning disabilities can use them. In this chapter we have given a number of national and local examples of where to find resources and get advice. It is important that any information is reliable, and we have given you some tips about how to determine this. We should be supporting people with learning disabilities to make informed choices about their health where possible, as like everybody else, this can help them live a healthier and therefore more enjoyable life.

Reflective Space

In Exercise 10.1 we asked you to think of an example of a reasonable adjustment, and to reflect on the difference reasonable adjustments can make to people with learning disabilities. In Exercise 10.2 we asked you to look at some potential sources of information and resources; in Exercise 10.3 we asked you to think of an example of a good resource and how you might use it. Having read this chapter, do you think you will search for resources and information differently in the future, and how will you apply your learning so that the people with learning disabilities you support get better information and access to services in the future?

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References Chapman MJ, Mitchell D. Mindfully valuing people now: an evaluation of introduction to mindfulness workshops for people with intellectual disabilities. Mindfulness. 2013;4(2):179–89. Hwang YS, Kearney P.  A systematic review of mindfulness intervention for individuals with developmental disabilities: long term practice and long-lasting effects. Res Dev Disabil. 2013;34(1):314–26.

 upporting Steven’s Health—A Poem by Suze S Cooper

Maybe I didn’t hold you down the right way Or maybe they just should have listened Maybe I didn’t say what I needed to say Or maybe they just should have listened How could I let them do that to you? As the blood trickled down and spread into the sheet My heart filled with tears - there would be no repeat With those wondering eyes that said ‘what’s going on? Why did you do that? What have I done wrong?’ When I think of those moments my world falls apart The cut on your arm is a scar on my heart As she steps back Colour drains from her face That was a failed attempt.

© Springer Nature Switzerland AG 2020 P. Heslop, C. Hebron (eds.), Promoting the Health and Well-Being of People with Learning Disabilities, https://doi.org/10.1007/978-3-030-43488-5

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