CHAPTER 1
INTRODUCTION
This book is intended for those health care assistants, nursing students and staff nurses who are not learning disability specialists but who, as a result of working with those who have a learning disability, would like to learn more about and understand learning disability as a condition and hence provide better care and support for those with a learning disability. As the following three boxes show, learning disability registered nurses are facing and are likely to continue to face a number of professional challenges. Consequently, the support that the non-learning disability specialist will be able to offer both those with a learning disability and learning disability nurses is likely to become increasingly important.
Indeed, given these professional challenges facing many learning disability nurses, it is possible for the non-specialist health care assistant (HCA), student nurse or staff nurse to come into their own here and make a significant and positive impact upon the care experienced by those who have a learning disability.
Why the need for another book on learning disability nursing, care and support? Indeed, is there a need?
This may seem to be a slightly odd way to open a new book which aims to support those who provide non-specialist nursing, health and social care support for those with learning disabilities, as there are a number of other books that will be useful in supporting and caring for both adults and children with learning disabilities. Mark Jukes (2009), Ian Peate and Debra Fearns (2006), Louise Clark and Peter Griffiths (2008) and Helena Priest and Michael Gibbs (2011) spring to mind here. There are also an increasing number of books about autism spectrum conditions that may be of use, including Barber (2011). However, the reason for this book is to provide the non-learning disability specialist care professional with practical suggestions, which are easy to both follow and implement, for supporting this client group. It is not the intention to replicate the contents of other books but to highlight areas that seem to 'fall between the cracks' and consequently are rarely if ever mentioned within other books: discrimination, spirituality, 'informal care givers' and sexuality, as well as dying, death and bereavement. Please, do not be put off by the occasional 'confrontational' comment that may be found within these pages. It is not meant to suggest that nursing care for those with a learning disability is poor; indeed, far from it! However, there may be occasions when the attitudes and practices of some HCAs, nursing students and registered nurses may need to be challenged. If through the process of this challenging, people have been offended, then apologies are offered and forgiveness sought.
As can be seen from the quotes that began this chapter, we live and work in interesting times. There are a large number of books, journals and journal articles by countless authors around those with a learning disability, the families of those with a learning disability, learning disability nurses and learning disability care workforce in general. However, there still appears to be a real and serious gap in the knowledge of many non-specialist nurses, doctors, social care staff and the 'professions allied to medicine' (PAMS: physiotherapists, occupational therapists and paramedics) regarding the lives and needs of those with a learning disability.
Let me pose a small number of simple challenges:
PAUSE FOR THOUGHT 1.1
How much do you really know about learning disability and those with a learning disability?
PAUSE FOR THOUGHT 1.2
In any given week where you work, how many of your patients or service users do you think have a learning disability?
PAUSE FOR THOUGHT 1.3
Is your knowledge of learning disability enough to provide the type and level of care and support that you would like and that your patients or service users need?
If the non-learning disability specialist nurse, nursing student or health care assistant experiences challenges such as these, this may well impact upon the quality of care that those with a learning disability could experience (Mencap, 2007).
As far back as 1979, the Jay Report (Jay Committee, 1979) recommended the ending of learning disability as a nursing branch. Such recommendations have been echoed over many years during debates at RCN Congress. Even the Nursing and Midwifery Council (2008) tried to restructure pre-registration nurse training with a view to establishing a generalist nurse who would, in theory, have enough knowledge and skills to work in any clinical setting and with any clinical group. Learning disability, mental health and paediatric branches could all be followed at post-registration level. Indeed, such an approach received much, but by no means universal support within nursing's senior management and senior leadership, and was also resisted by many nurses. It may be likely that groups of other health care workers such as physiotherapists, occupational therapists and paramedics may also be debating their roles in engaging with and supporting those with a learning disability whom they encounter through their work.
But what of the roles of the 'non-learning disability' nurse, nursing student, HCA, physiotherapist, occupational therapist, paramedic or social care worker? After all, one criticism that could be levelled, possibly with some validity, at existing books is that perhaps the bulk of these books that are available on the subject of learning disability and the care and support of those with a learning disability are aimed, primarily, at those working within the field of learning disability care and support. However, do not all nurses, HCAs, social care staff and many physiotherapists, occupational therapists and paramedics come into contact and work with people with a learning disability at some point in their careers?
Partly to answer this criticism, four 'colleagues' would like to introduce themselves:
Sally is a senior staff nurse with five years' post-qualifying experience, first in an A&E department and then in an acute medical ward of her local general hospital. Sally says that she occasionally encounters patients who have a learning disability but does not feel confident in meeting their specific care needs.
Hanif is a '40-something' second-year student nurse who is following the 'adult branch'. Before commencing his nurse training, Hanif worked as an HCA in the same A&E department as Sally. Hanif would like to learn more about learning disability than he feels that he currently learns from his training.
Jill is an HCA who has worked at her local GP practice and community health centre for the past six years after working in an office for a year. Jill has a younger sister who has Down's syndrome.
Chris is a registered nurse for those with a learning disability and is the author of this, his second book. Chris, who has Asperger's syndrome / high-functioning autism, currently works as a full-time care giver for his wife and son.
Sally, Hanif and Jill have very kindly asked to act as 'critical and questioning friends' who will ask the odd question and make the occasional comment and observation on the care and support of those with a learning disability from their own perspectives and experiences. Chris will re-appear in the final chapter.
A BRIEF OVERVIEW OF THE BOOK
In order to fill some of these gaps in knowledge and understanding, this short book will focus on a number of issues pertinent to the understanding, care and support of those with a learning disability.
At this point, Marcel, Ziva and Thomas would like to introduce themselves.
Marcel is a '30-something' man who was born in Morocco and who happens to have Down's syndrome. He lives at home with his parents who are in their 60s and his pet cat that he calls 'Moggy'. Marcel works part time at the café at his local supermarket. His elder sister, Ziva, is married and has two children. Marcel's hobbies include music, 'Red Dwarf', country walks and meeting people.
Ziva, who is Marcel's sister, has Asperger's syndrome / high-functioning autism. She is married and has two children, one of whom is also on the autism spectrum. Ziva works part time as a university lecturer in pure and applied maths.
Thomas is 65 years old and has a profound and multiple learning disability with additional severe mobility problems, pre-verbal communication skills, inability to digest food, arthritis and epilepsy. Thomas lives within a social care home.
Marcel, Ziva and Thomas have asked if they can be your guides throughout the following chapters.
Chapter 2 gives a definition of learning disability. There are a number of definitions and unless one is able to understand what learning disability is, it could be suggested that health and social care and support of those with a learning disability will be impoverished. The lived meaning and experience of having a learning disability will be highlighted through the eyes of Marcel, Ziva and Thomas.
The meaning of profound and multiple learning disability will be focused on in Chapter 3 and will be informed by the experiences of Thomas.
There have been many government and independent sector reports over the last 40 years or so around the services for, and the quality of life of those with a learning disability. These have included reports into some of the learning disability hospitals in the early 1970s, the Jay Report in the late 1970s, the 2001 White Paper ('Valuing People') and the Mencap report 'Death by Indifference' in 2007. Chapter 4 will focus on and explain what these reports and any subsequent legislation mean for nurses, nursing students, HCAs, social care staff and PAMs working with people with a learning disability.
Many, if not most nurses and HCAs are likely, at some point in their work, to encounter and provide health care support to those with a learning disability. Chapter 5 will focus on how to provide high quality support within a number of generalist health care environments including health centres, GP practices, outpatient departments and acute / medical or surgical wards of a general hospital.
Chapter 6 will focus on the often complex area of consent to treatment and intervention with regards to those with a learning disability. Just because a person has a learning disability does not necessarily mean that they cannot give, withhold or withdraw consent.
Although learning disability and mental ill health are not the same thing, there is an overlap between the two. Chapter 7 will focus on the mental health needs of those with a learning disability.
Some of those with a learning disability will commit crimes; occasionally, some of these crimes will be of a very serious nature including assault, murder, sexual assault, rape and arson and will require specialist forensic services. Chapter 8 will focus on the care and support of those with a learning disability who require such specialist services.
The subject of sexuality, relationships and those with a learning disability as parents has always been very controversial. Chapter 9 will focus on the sexual and relationship needs of those with a learning disability.
The challenges and delights of ageing for those with a learning disability and those who care for them will be highlighted in Chapter 10.
Although learning disability does not necessarily equate to having a short life span as once it did, dying and death are part and parcel and are the inevitable conclusion of all life, of all humanity. Chapter 11 will focus on end of life processes and the role of the nurse and HCA in this process.
Many, if not most, people with a learning disability will live at home with their parents and siblings rather than in a non-family residential setting such as a learning disability hospital or community home. Chapter 12 will focus on the experiences and needs of families who look after a person with a learning disability.
There has been a long and very sad and painful history of discrimination against those with a learning disability and their families. Following on from the previous chapter on the care and support of 'informal carers', Chapter 13 will focus on this history and the role of the nurse, HCA, social care staff and PAMs in combating such discrimination and prejudice.
Spirituality is not about ticking the 'Church of England' box on the service user's assessment form or attention to the cultural and religious dimensions of diet, clothing and personal hygiene. Chapter 14 will focus on and explore a definition and applicability of spirituality to those with a learning disability.
The final chapter will look back and reflect in order to look forward, with a view to suggesting a small number of future developments in learning disability services and care. This chapter will also include a conversation between Hanif, Ziva, Thomas, Sally, Marcel and Jill.
The appendices comprise a brief glossary of learning disability terms and a short selection of resources on learning disability, those with a learning disability and practical suggestions on how to support those with a learning disability.
Ziva, being a university lecturer, may be an odd person to act as a guide in a book about learning disabilities as the inclusion of Asperger's syndrome, or high-functioning autism as it is sometimes known, in the umbrella term of learning disability is debatable. However, Ziva says that she will delve into this issue in the next chapter. On the other hand, being Marcel's sister, she is able to provide much useful information regarding life with a learning disability. The stories of Thomas, Marcel and Ziva will unfold over the coming pages and chapters, but at the moment they would just like to say "Hi"!
All that remains to be said here is welcome to this short book. I hope that you will enjoy reading it, that it will challenge how you think about and interact with those who have a learning disability and that it will be of use and benefit to you in your daily work.
CHAPTER 2
WHAT IS LEARNING DISABILITY?
AIMS AND LEARNING OUTCOMES:
The aims of this chapter are to:
• Present two 'dictionary' type definitions of 'learning disability'
• Discuss these two definitions
• Highlight the identity of learning disability.
By the end of this chapter you will have gained:
• A basic understanding of the definition and meaning of learning disability from a number of different standpoints
• A basic understanding of how these meanings have changed over time.
Marcel, a 39-year-old man with Down's syndrome is admitted, having had a stroke, onto the general medical ward on which Hanif works as part of a 2 year student nurse placement. This is the first time that Hanif has had a patient with Down's syndrome and he knows very little about learning disability in general and Down's syndrome in particular. At the handover at the start of Hanif's shift, he asks: 'What is learning disability?'
PAUSE FOR THOUGHT 2.1
A nurse, who during a debate at RCN Congress said that he considers himself to have Asperger's syndrome, was asked: 'What is this disease called Asperger's?' Do you, the reader, consider learning disability to be a disease? Do you consider that learning disability is catching?
INTRODUCTION
What is learning disability? Hanif would be forgiven for asking this question, particularly as he has not previously worked with people who have a learning disability. Following on from this initial question, it may be appropriate that a number of further questions could be asked: What does it mean to have a learning disability? Indeed, to develop this further, what does it mean to be 'learning disabled'?
A careful reading of the above questions seems to highlight three different issues:
• A possible need for a basic, clear and factual definition of learning disability
• A possible need for a discussion around learning disability as possession in much the same way as having or possessing a broken leg or a broken arm or having a headache
• A possible need for a discussion around learning disability as personal identity.
These are all valid and perfectly reasonable questions to ask, particularly if Hanif has had very little if any previous knowledge or experience of, or exposure to learning disability as either an 'abstract' or a 'physical' concept or reality. Appropriate theoretical learning and clinical experience opportunities around learning disabilities may not always be available to Hanif.
Again, there could well be a perception that learning disability is a 'childhood' condition or there may well be some confusion as to 'learning disabilities' and 'learning difficulties', with some people thinking that these two terms refer to the same condition or phenomenon. Learning difficulties or specific learning difficulties usually refer to the specific conditions of dyslexia, dyspraxia and dyscalculia. Specific Learning Difficulties (SpLDs) affect the way information is learned and processed. They are neurological (rather than psychological), usually run in families and occur independently of intelligence. They can have significant impact on education and learning and on the acquisition of literacy skills (British Dyslexia Association, 2012).
