Useful services and organisations

Community Teams for people with Intellectual Disabilities (UK)

These are specialist multidisciplinary health teams that support adults with intellectual disabilities and their families and carers in the UK. The provide assessment, support for access to mainstream healthcare, and a range of clinical interventions. Your General Practitioner 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 in the UK.

Palliative Care of people with Learning Disabilities (PCPLD) Network
Encourages and contributes to the development of good practice in the palliative care of people with intellectual disabilities, through networking and organising national and regional study days.

Cruse Bereavement Care
Offers free bereavement counselling, support and information to anyone affected by death (including paid carers).

Respond
This London-based charity supports people with intellectual disabilities, their carers and professionals around any issue of trauma (including bereavement) by offering advice, training and psychotherapy.

Skylight Trust
A New Zealand based organisation supporting people in traumatic situations. The website has very useful guidelines on supporting children and teens through bereavement.

The National Autistic Society
The services of this charity include advice, information and training on all aspects of autism.

Carers UK
A UK charity set up to help and support people who care for family or friends.

Alzheimer’s Society
Telephone and online services provide information on all aspects of living with dementia. As a support and research charity, this is a membership organisation working to improve the quality of life of people affected by dementia in England, Wales and Northern Ireland.

Mencap
A campaigning charity in the UK working closely with people with intellectual disabilities and carers to improve lives. Also provides a wide range of information and resources on living with intellectual disabilities.

Web-based training resources on intellectual disabilities

General Medical Council
This website has a useful section for doctors and other general health care staff on people with intellectual disabilities, addressing issues of assessment and communication. There is also a helpful Resources page.

Understanding intellectual disability & health
This website, hosted by St George’s University of London, is a comprehensive learning resource for medical, nursing and other healthcare students on understanding issues around intellectual disabilities and health. It includes guidance on communication and consent.

Resources for people with intellectual disabilities

Books Beyond Words

www.booksbeyondwords.co.uk
Books Beyond Words is a series of picture books that has been developed to make communicating easier for these people with intellectual 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. The website also includes a video and advice on how to use the books.

Selected useful titles:

Am I going to die? Am I going to die?
It tells the story of a man who has intellectual disabilities and who is terminally ill, showing how he is affected by the physical and emotional aspects of dying. It highlights the importance of making good use of the time left, and of saying goodbyes.

When Dad died and When Mum died
These books tell the story of the death of a parent in an honest, straightforward and moving way.

When somebody dies
The book shows how two people are upset when someone they love dies, but help from friends and counselling helps them to deal with their grief.

Ann has dementia
This book shows what happens to Ann as her dementia causes her to behave in an unusual way. Her family doctor and supporter try to provide the right care for her at home in the early days of her dementia, until Ann becomes so confused that she moves into residential care.

Getting on with cancer
This book tells the story of Veronica, a woman with Down’s Syndrome, who has cancer. She has surgery and also radiotherapy and chemotherapy. The book deals honestly with the unpleasant side of treatment.

We’re Living Well but Dying Matters

http://www.dyingmatters.org/page/were-living-well-dying-matters
A video about including people with intellectual disabilities in discussions about death, dying and bereavement. It shows a group of people with intellectual disabilities discussing what they would like to happen when they die.

Easy-read accessible books about cancer

http://www.changepeople.co.uk/productDetails.php?id=1727
These book are produced by CHANGE. There are three titles, each with an illustrated book for people with intellectual disabilities and a book for carers:

  • Symptoms, screening and staying healthy
  • Diagnosis and treatment
  • Palliative care, end of life care and bereavement.
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Easyhealth

http://www.easyhealth.org.uk/

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.