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Links and resources
Content
- Resources for people with learning disabilities
- Leaflets from the NHS screening programmes
- Articles & Academic papers
- Reports, Acts and Government Guidelines
- Books
- Resources for professionals
- Training and advice
- Useful services and organisations
Resources for people with learning disabilities
“We are living well but dying matters”. A DVD to encourage people with learning disabilities to express their thoughts and questions about death, dying and planning for the end of life. Available to download: Download here
Easyhealth
A website with links to health information that is easy to understand. Over 40 organisations from across the UK have put their information onto this website.
Books Beyond Words
Books Beyond Words is a series of picture books that has been developed to make communicating easier for these people with learning disabilities, and to enable discussion about difficult topics. The pictures are designed to help the reader make sense of what is happening to them, and help them to ask questions or share their concerns. Supporting text and guidelines are also provided for carers, supporters and professionals
Selected useful titles in the Books Beyond Words Series, all available through their website:
Am I going to die?
This book is based on the real-life experiences of people with learning disabilities who were terminally ill. It tells the story of a man who has learning disabilities and who is dying. The pictures follow him in his illness and his final days.
Getting on with cancer
This book is based on the real-life story of the author, Veronica Donaghey, a woman with Down Syndrome. Veronica had cancer. The book tells the story of a woman who is diagnosed with cancer, and then has surgery, radiotherapy and chemotherapy. It ends on a positive note.
When Dad died and When Mum died
These books tell the story of the death of a parent in a simple but moving way.
When somebody dies
This book shows people with learning disabilities that they need not be alone when they feel sad about someone’s death, and that talking about it to a friend or to a counsellor can help them get through this difficult time.
Going to the doctor
This book illustrates a variety of experiences which may occur at a GP practice, including having one’s ears syringed, a physical examination, a blood test and a blood pressure check.
Going to out-patients
This book explains what happens in out-patient departments, covering tests such as ultrasound, X-ray and hearing test.
Going into hospital
This book explains what happens in hospital, including a planned admission for an operation and an emergency admission.
Looking after my breasts
Designed to support women who are invited for breast screening, including a woman having a mammogram and a woman who demonstrates how to be aware of changes in your own breast.
Keeping healthy ‘down below’
Designed to support women who are invited for a smear test.
Six easy-read accessible books about cancer, produced by CHANGE
These illustrated books are for people with learning disabilities and their carers. They cover: Symptoms, screening and staying healthy; Diagnosis and treatment; Palliative care, end of life care and bereavement. Macmillan Cancer Support distributes the books free of charge, but they are not unlimited.
We are living well but dying matters’:
A DVD to encourage people with learning disabilities to express their thoughts and questions about death, dying and planning for the end of life
Leaflets from the NHS screening programmes
The following picture leaflets are designed to give people with learning disabilities information about certain types of screening, and where to get further information. They can be downloaded in PDF format from the following links:
50 or over? Breast screening is for you
An easy guide to bowel cancer screening
An easy guide to having a colonoscopy
FAIR Multimedia booklets and CD Rom
Fair (Family Advice and Information Resource) are an organisation who provide information for people with learning difficulties. Their booklets, CD roms and other materials have easy to read information on a range of subjects including checking for cancers, living with cancer, bowel cancer and maintaining good health. To order, visit their website.
Articles & Academic papers
View all articles & academic papers
Reports, Acts and Government Guidelines
Healthcare for All (2008)
Sir Michael’s report of the Independent Inquiry into access to healthcare for people with learning disabilities.
Death by Indifference (2007) (Standard or easy read version)
Mencap’s campaign for equal healthcare for people with learning disabilities. It reports the death of six people with learning disabilities in NHS care.
Six lives: the provision of public services to people with learning disabilities (2009)
The ombudsman report of the investigations of the six deaths in Mencap’s “Death by Indifference” report.
Treat me right (2004) (Standard or easy read version)
Mencap’s campaining report calling for better healthcare for people with a learning disability.
Mental Capacity Act 2005 (England and Wales)
Adults with an Incapacity (Scotland) Act 2000
Valuing People: a new strategy for learning disability for the 21st century
UK Government White Paper 2001
Valuing People Now: a new three year strategy for people with learning disabilities (2009)
Seeking consent: working with people with learning disabilities (2001)
Books
End-of-life care for children and adults with intellectual and developmental disabilities
by Sandra Friedman and David Helm.
A comprehensive textbook published by the American Association on Intellectual and Developmental Disabilities. It has a strong focus on ethics and medical decision making at the end of life, although there are also some helpful chapter on social, emotional and spiritual support.
Living with learning disabilities, dying with cancer: thirteen personal stories
by Irene Tuffrey-Wijne (2010).
A powerful and moving account of the experiences of thirteen people with learning disabilities who were living with cancer, most of whom died of the disease. An invaluable resource for anyone involved in the care of people with learning disabilities who are facing cancer or other life-threatening illness, including staff working in learning disability services, health professionals and family carers.
Caring for people with learning disabilities who are dying
by Noëlle Blackman and Stuart Todd (2005)
A concise, clearly written and practical book full of advice for service managers and staff working in learning disability services.
Loss and learning disability
by Noëlle Blackman (2003)
This book is for care staff, therapists and counsellors working with people with learning disabilities. It talks about how people with learning disabilities can be affected by bereavement. It includes ways to prevent normal grief from becoming a bigger problems and ways of helping people when the grief process ‘goes wrong’.
Resources for professionals
Learning disabilities and dementia
“Supporting Derek” is a DVD and training pack for staff working with people who have a learning disability and dementia. It covers many of the key issues related to diagnosing and responding to dementia in people with learning difficulties. The short drama included on the DVD (acted out by people with a learning difficulty) gives a powerful insight into the reality of dementia and how it might feel to the individual affected.
Gold Standards Framework
The GSF is a systematic evidence based approach to optimising the care for patients nearing the end of life delivered by generalist providers. This includes primary care, care homes and acute hospital settings. For example, the GSF runs a national training and quality assurance programme for care homes, aimed at building confidence and experience, and based on up-to-date evidence of best practice. This involves preparation, training workshops, and consolidation leading to accreditation.
Living and dying with dignity: The best practice guide to end-of-life care for people with a learning disability
A practical guide produced by Mencap and the University of Keele. There is also an easy-read version and a summary of key messages. Both versions can be downloaded in PDF format from the Mencap website.
Dementia and People with learning disabilities
This training pack has been devised by Respond in partnership with the GOLD group – a group of older people with learning disabilities who have been working together for the past decade on helping others to understand what it means to grow older with a learning disability. It has been designed primarily with the staff team of a residential home in mind, but is flexible for other training situations. Contains 2 DVDs, training and action cards, and a resource list. To order visit the website.
Understanding Intellectual Disability and Health
A web-based learning resource for medical, nursing and other healthcare students, incorporating a wide range of articles.
Disability Distress Assessment Tool (DisDAT)
This tool is intended to help identify distress cues in people who because of cognitive impairment or physical illness have severely limited communication. It is usable by any carer, both lay and professional. The tool gives you more confidence in the observation skills you already have which in turn will help you improve the care of your client or patient. It is a means of providing a clearer picture of a client’s ‘language’ of distress.
End of Life Care Checklist
This tool is intended for learning disability staff who are supporting people with learning disabilities at the end of life. It can be used as a checklist to ensure that all areas of care and support are considered. The checklist is still being improved; users are invited to fill in an evaluation form to help this process.
The route to success in end of life care – achieving quality for people with learning disabilities
This publication from the National End of Life Care Programme aims to provide a practical guide which supports anyone caring for people with learning disabilities to ensure that those who may be in the last months of their life receive high quality end of life care. It may also be useful to health or social care professionals who come into contact with people with learning disabilities in clarifying what measures need to be taken to ensure that they can access appropriate care.
Training and advice
ENFOLD
ENFOLD c.l.c. provides bespoke courses and interventions to support the end of life care for people with learning disabilities. From diagnosis through treatment or into bereavement the training is based on both the most up to date research and significant hands-on experience of caring directly for people with learning disabilities who are ill or bereaved, their families and the professionals who care for them. A range of stand-alone courses are also on offer, including communication, end of life care and bereavement. The services is co-ordinated by Linda McEnhill.
Contact details:
Tel 01223 573173
Email info@enfold.org.uk
Patient Advice and Liaison Service (PALS)
Mencap Learning Disability Helpline
If you have a problem accessing healthcare, speak to the Patient Advice and Liason Service (PALS) at your local hospital, or contact the Mencap Learning Disability Helpline.
Email info@enfold.org.uk
Useful services and organisations
Mencap
Mencap supports people with learning disabilities in a range of different ways. It works in partnership with people with a learning disability, and all their services support people to live life as they choose. Mencap’s work includes:
- providing high-quality, flexible services that allow people to live as independently as possible in a place they choose
- providing advice through our helplines and websites
- campaigning for the changes that people with a learning disability want.
Mencap is an individual membership organisation and their work is shaped by what their members tell us about their needs and wishes.
Mencap has strong relations with a local network of more than 500 affiliated groups. Their local groups are individual charities in their own right, but Mencap works closely with them to ensure people with a learning disability and their families have support locally as well as nationally.
For a wide range of resources, including resources on health care, visit here.
For details of Mencap’s telephone helpline, visit here.
Community Teams for people with Learning Disabilities
These are specialist multidisciplinary health teams that support adults with learning disabilities and their families and carers by assessment, by supporting access to mainstream healthcare, and by providing a range of clinical interventions. Your GP or social services department should have the details of your local team.
Hospice Information Service, Help the Hospices
Provides information about hospice care and about locally available hospice and palliative care services.
Macmillan Information Line
Provides practical, emotional, medical and financial advice for people affected by cancer in general. Also provides information about Macmillan services as well as other cancer organisations and support agencies.
Cruse Bereavement Care
Offers free bereavement counselling, support and information to anyone affected by death (including paid carers).
Respond
This organisation supports people with learning disabilities, their carers and professionals around any issue of trauma, including bereavement.
Patient Advice and Liaison Service (PALS)
Mencap Learning Disability Helpline
If you have a problem accessing healthcare, speak to the Patient Advice and Liason Service (PALS) at your local hospital, or contact the Mencap Learning Disability Helpline.
Membership
You are very welcome to browse the website, and take advantage of the information and expertise we offer. However, to benefit fully from opportunities to share and network, you may want to join us as a member.
Membership is free, and open to anyone who is interested in promoting excellent palliative and end of life care for people with learning disabilities.
Our members are mostly professionals, but also include some (family) carers, and some people with learning disabilities.
How to join
The PCPLD Network is a professional association of Help the Hospices
This website is funded and supported by Mencap
