This is a beautifully and sensitively written book. Although it has been aimed at health care professionals and students, it is equally applicable to carers and families of people living with learning disabilities. It follows the life course of those with learning disabilities, and the use of case studies makes it an exceptionally realistic information guide. Every chapter is significant and has a crucial role in the care and nurturing of this population.
Three of the themes covered touched me in particular. Firstly, at a time when dementia care is at the forefront of delivery of appropriate care and support, it is encouraging to highlight the condition and its impact on people with learning disability as overall life expectancy increases. Using the scenarios to support the level of care, and addressing the gaps in care provision for people with learning disability, assists in increasing awareness for health workers.
In Chapter 9, the author covers a subject that health care professionals, families and carers alike find it difficult to mention and even discuss with the person with the learning disability. It is, in my view, important that sexuality is not treated as a taboo subject but as a human right, with the appropriate support to change attitudes of stakeholders and carers.
In Chapter 12, informal carers are addressed; these are unpaid carers whose needs and wellbeing are often ignored or overlooked. The author examines this and offers the reader an understanding of the important role they play and the need to be rewarded for their contribution. Thank you to you all.
Chris Barber’s book is an enjoyable, touching and inspirational read for all those involved in the lives of people with learning disabilities.
Cecilia Anim
President of the Royal College of Nursing (2015)
Acknowledgements
I would like to thank my wife Jean and my son Freddie for their support and patience during the writing of this book.
Furthermore, I would like to thank the reviewers for their kind and thoughtful comments and suggestions regarding the text.
Finally, I would like to thank Mark Allen Publishing for their kind permission to reproduce text that was first published by the British Journal of Health Care Assistants.
01
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.
“At a time when the number of people with learning difficulties is growing, the size of the learning disability workforce is shrinking, along with available nursing support”
(Lowthian, 2011, page 6)
“There are currently big issues for learning disability nurses around networks of support and a sense of isolation when it comes to accessing them. At present there’s nothing in place to assist the learning disability workforce”
(Michael Brown, Chair of the RCN’s learning disability forum as cited by Lowthian, 2011, page 6)
“Learning disability nurses need to be given sufficient training, status and recognition by the NHS. Without this recognition, fewer nurses will choose to specialise in this area and the quality of care offered will only get worse”
(David Congdon (Mencap) as cited by Lowthian, 2011, page 6)
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
