Caring for the Physical and Mental Health of People with Learning Disabilities

Louise Hammond, Geoff Marston, Sherryl Gaskell, James Eva, David Perry

• Publisher: Jessica Kingsley Publishers
• Year: 2010
• Print ISBN: 9781849051316
• eBook ISBN: 9780857002259
• Topic: Education
• Subtopic: Learning Disabilities

People with learning disabilities are at greater risk of physical and psychiatric illness than the population at large, but their health needs are often not adequately supported.

This book is a practical guide for those caring for people with learning disabilities living in community settings. It is designed to help the carers to better understand what the service users' health needs may be, how to recognise problems, and how to meet their needs. Chapter topics include physical health issues such as epilepsy, common health problems and diet and well-being; mental health issues such as dementia, depression, bipolar disorder and anxiety; and information related to common issues such as sleep and swallowing problems. The book also includes advice on screening programmes and health checks.

Written in an accessible and straightforward style, this book will be an invaluable guide for anyone caring for someone with a learning disability, including social carers, health facilitators, community nurses and family carers.

Section 1

The Physical Health
and Mental Health
Needs of People with
a Learning Disability

Chapter 1

About This Book

In the past 25 years there has been significant change in the way people with learning disabilities are cared for in the United Kingdom and many other parts of the world. Following the closure of longstay residential hospitals in many parts of the world, people with learning disabilities have returned to live in community settings. This has borne fruit in terms of many advantages relating to improved accommodation, work and leisure and opportunities, thus enabling more rewarding and fulfilling lives for these people. However, it has become increasingly apparent that some physical and psychological needs are not being satisfactorily met, and frequently this is because such needs are not detected, or acted upon, in a timely manner.

When people with learning disabilities lived in the confines of large residential hospitals they were under 24-hour supervision by qualified nursing staff, and the ‘care’ of doctors. For many people with learning disabilities this was unnecessary, and often the physical conditions in which they lived were poor. However, staff developed a degree of expertise in assessing and managing both physical and psychiatric illnesses in their clients.

Following closure of the hospitals, and the move into community residential provision, staffing arrangements changed. People with learning disabilities were now looked after by care staff with vocational qualifications, and their medical needs were met by local general practitioners (GPs).

Currently in the UK, medical schools devote little time to training students about the specific health-care needs of people with learning disabilities, usually no more than one or two days in a five-year course. Furthermore, many GPs have few such patients on their books. Not surprisingly, therefore, their knowledge in this area is often scant, particularly with respect to the health issues related to specific genetic syndromes.

Difficulties in this area are compounded by the ways in which doctors are taught to diagnose. Traditionally, this has been done by taking a history of an illness, carrying out a physical examination, and then, if necessary, arranging special investigations, such as blood tests or various scans. Unfortunately, people with learning disabilities, particularly those with more severe degrees, do not neatly fit this model. Often they have problems that do not have a simple or easily understood history. Sometimes they resist physical examination, and are frightened and disturbed by physical investigations like blood tests or scans.

This often means that physical health problems are unidentified until they have progressed to a late stage. Successful treatment may then prove more difficult, with poorer outcomes as a result. This is particularly true of non-verbal clients, who may only respond to pain or distress with disturbed behaviour.

It is more recognised today that psychiatric disorders present in atypical ways in people with learning disabilities, and that this can lead to delays in diagnosis. Illness is often misunderstood, and erroneously attributed to other reasons. This is particularly sad considering the fact that people with learning disabilities are at as much as two and a half times the general risk of a wide range of physical health problems.

Who is this book for?

This book is intended to be useful for the following groups of people.

Family or paid carers

Family members or paid carers may be in a position where they need to:

•support a person with learning disabilities to access services by attending appointments with them, and providing accurate information about health matters

•prepare a person to access services, e.g. by taking them for a preparatory visit

•monitor health outcomes, e.g. by weighing a person who is dieting or on certain medications, or monitoring blood sugars (if a person is diabetic)

•liaise with specialist professionals to ensure the person’s health needs are met.

This support might also be described as ‘health facilitation’ – ensuring that the health needs of the person are represented and met.

Professional health facilitators

This group includes community nurses and social workers who have a wider remit, including the following:

•work with people with learning disabilities and carers to discover their experiences of primary health care, with a view to contributing to future service developments

•set up, administer and monitor annual health checks

•assist paid and unpaid carers in providing up-to-date, useful and evidence-based information on personal health needs

•update the knowledge-base and skills of members of the Primary Health Care Team, including GPs

•assist with the continuing identification of people with learning disabilities

•encourage general practitioners to use a standardised computer code on their information systems so that patients with a learning disability can be easily identified. (This would be useful for identifying people for particular screening programmes, e.g. Down’s syndrome.)

•assist with good health promotion, particularly amongst people from minority ethnic groups

•act as route for information between Primary Health Care Trusts, specialist services (e.g. consultant learning disability psychiatrists or psychologists) and clients/carers

•provide quality information to commisioners so better services can be developed.

For the purposes of this book, we will simply use the term ‘carers’ throughout, unless sections are written specifically for one group or the other (and in those cases, we will make this explicit). A glossary at the end of the book provides an explanation of all technical terms.

Why is support required?

People with learning disabilities are at much greater risk of physical and psychiatric illness than the population at large – some estimates suggest up to two and a half times the general risk. The chapters that follow list the common health problems that arise, along with information about their relationship with learning disability and advice on how to support those who experience them.

These problems may be related to, or resulting from, the underlying cause of the learning disability – e.g. Down’s syndrome is often associated with thyroid or heart disease, tuberous sclerosis and epilepsy. Others may be related to lifestyle circumstances, e.g. lack of exercise and poor dietary intake, which contribute to the likelihood of having problems associated with obesity, diabetes or cerebrovascular disease.

The following difficulties are commonly found in relation to the illness of people with learning disabilities:

•People with learning disabilities have difficulty accessing primary care.

•Carers may not recognise health needs, or the presence of illness.

•There is poor uptake by such people of screening programmes, e.g. cervical cytology.

•There is over-reliance on psychotropic drugs for the management of challenging behaviour.

•Health outcomes for people with learning disabilities fall far short of expectations for the general population.

•People with learning disabilities have a reduced life expectancy of approximately ten years.

Carers not only need to overcome the problems of higher rates of illness and difficulties of initial identification of such illness, but also face difficulties in dealing with staff who may have limited experience in dealing with people with a learning disability, and access to primary (general practitioner) and secondary (hospital) care.

Table 1.1 gives a range of practical tips suggesting steps that can be taken by a carer acting as a health facilitator to ensure that access to, and experience of, health care for the person for whom they care is improved.

T...

Table of contents

• Cover
• Of Related Interest
• Title Page
• Copyright
• Contents
• Foreword
• Section 1 – The Physical Health and Mental Health Needs of People with a Learning Disability
• Section 2 – Associated Conditions and Issues
• Section 3 – Accessing Services
• Appendix
• Glossary
• References
• Index