Whilst every effort is made to ensure that the information is accurate, practice in this field is constantly evolving. If you have concerns about any information please contact us. Listing and links to wbesites and resources should not be seen as an endorsement. Although regular checks are made, the availability of linked pages cannot be guaranteed.
When I die pictorial guide from Sunderland People First to give an example of what a person centred approach to the ‘end of life’ should look like.
When I die – example of a person centred plan from Calderstones NHS Trust
Community Learning Disability Team, North East Lincolnshire have developed end of life care planning resources: What if? – Celebrating my life (plan) / What if? – Celebrating my life (explanation). Backgound information can be found here.
British Institute for Learning Disability (BILD) About dementia series, for people with learning disabilities
NHS North Tyne Liverpool Care Pathway group have produced two booklets entitled “When someone is dying” (about the LCP) and “Grieving – How it might feel”. Download here
Dying Matters Coalition: “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. Download here
Booklet on grief
This booklet, from Scope, explains grief and the emotions associated with grief, in simple words and pictures. There is also a section for carers and professionals.
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 are a series of picture books that developed to make communicating easier for these people with learning disabilities, and to enable discussion about difficult topics. Supporting text and guidelines are also provided for carers, supporters and professionals:
Am I going to die?
Getting on with cancer
When Dad died and When Mum died
When somebody dies
Ann has dementia
Going to the doctor
Going to out-patients
Going into hospital
Looking after my breasts (for women who are invited for breast screening)
Keeping healthy ‘down below’ (for 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.
A number of hospitals have now got easy-read information in their website. Here is a good example:
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:
We are developing a comprehensive list of journal articles, please click on the link below for more information.
Report of the Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD)
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.
Valuing People: a new strategy for learning disability for the 21st century
UK Government White Paper 2001
How to break bad news to people with intellectual disabilities: a guide for carers and professionals by Irene Tuffrey-Wijne (2013)
A practical guide to help people with intellectual disabilities understand major changes in their lives, from death and bereavement to moving house and changes in routine. Written in straightforward language. See also www.breakingbadnews.org
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’.
Making it Work: shared decision making and people with learning disabilities. RCN Policy Briefing 41/12
A summary of resources to support palliative and end of life care for people with Learning Disabilities complied by the National Council for Palliative Care
Macmillan Cancer Support and Yorkshire Cancer Network, end of project report: ‘Researching Inequalities in Cancer Black & Minority Ethnic Communities and People with Learning Disabilities’
Easy read version available here
The Anticipatory Care Calendar is a simple tool to improve the daily surveillance of health for adults with learning disabilities or dementia. It prompts staff to think about the health of residents daily, and improves early detection of cancer and other diseases.
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.
Learning disability and dementia: information, resources and training
Breaking bad news
This website provides unique and practical guidelines that can be used by practitioners, families and carers to ease the process of breaking bad news to people with intellectual disabilities. The guidelines are adaptable to individual communication ability and level of understanding.
Publication by Linda McEnhill, published by Help the Hospices – Widening access to palliative care for people with learning disabilities: guidance and resources for professionals Download here
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.