People with learning disabilities
People with learning disabilities are some of the most marginalised groups in society. Many of the 1.5 million people with learning difficulties in the UK have to cope with death, dying and bereavement without being fully informed about what is going on. They also face particular barriers if they come to need end of life care and support.
Below are some useful links and resources for people with learning difficulties.
Film: We're Living Well but Dying Matters
Short film 'We’re living well but Dying Matters', produced by CHANGE for Dying Matters and the National End of Life Care Programme, is about including people with learning difficulties in discussions around death, dying and bereavement.
Book: Am I going to die? Sheila Hollins and Irene Tuffrey-Wijne
From the Books Beyond Words series for healthcare professionals, parents and carers who support people with learning disabilities. John has a terminal illness. This book tells his story, dealing with both physical deterioration and the emotional aspects of dying in an honest and moving way. John is shown getting weaker and needing more help. He looks back at his life and makes choices about how to spend his time. The pictures highlight the importance of going on special outings, of remembering good times, and of saying proper goodbyes to family and friends. The final images show John dying at home.
When I die: The Choices that Tony has made for the end of his life
This free, downloadable booklet produced by easyhealth.org.uk is an example of what a person-centred approach to the end of life planning should look like.
Mencap Bereavement Factsheet
This factsheet looks at some of the ways a parent or carer can help a person with a learning disability to understand and cope with loss, bereavement and death.
Planning for choice in end of life care; Educational Guide – Peer Education Project Group: Download PDF here
Mencap End of Life Care Best Practice Guide
The best practice guide to end-of-life care for people with a learning disability.