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