About learning disability / intellectual disability

Resources from the UK often use the term “learning disability”. Outside the UK, the term “intellectual disability” is commonly used.

Explanations of what learning/intellectual disability is:

National Health Service (NHS) UK 

Palliative care and learning disability

Delivering high quality end of life care for people who have a learning disability A guidance document produces jointly by NHS England and the PCPLD Network. Resources and tips for commissioners, service providers and health and social care staff providing, or delivering care to people with a learning disability at the end of their lives. Summary of the document

Overview | Care and support of people growing older with learning disabilities | Guidance | NICE This guideline covers care and support for adults with learning disabilities as they grow older.

Marie Curie booklets A series of easy-read booklets for people living with an illness that they will probably die from, and easy-read booklets for carers.

Widening Access to Palliative and End of Life Care for People with Intellectual Disabilities An open access online learning resource for health and social care professionals, hosted by All Ireland Institute of Hospice and Palliative Care (AIIHPC). You will need to register at first use. 

The dying process A resource from Australia, designed for the general population. It explains what happens during the dying process.

Website of Irene Tuffrey-Wijne Professor of Intellectual Disability and Palliative Care, containing information on her publications and latest research.

Improving end of life care for people with learning disabilities: Resource pack Developed by interdisciplinary team in Nottinghamshire

Mike’s Journey: resource for developmentally disabled facing hospice care. Personal story of Mike (who died of cancer), written by his family in the USA.

Pain and distress

How social care staff can recognise and manage pain in people with learning disabilities A guide from Public Health England

Microsoft Word – My Pain Profile Nov 2018 Self reporting pain assessment tool

Microsoft Word – My Pain Profile Nov 2018 Pain profile with on the day assessment tool

Disability Distress Assessment Tool 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.

End of life care plannning / Advance Care Planning / funeral planning

End Of Life Care Planning | The Victoria And Stuart Project end of life planning toolkit with resources and approaches to support staff with end of life care planning with people with learning disabilities

No Barriers Here© – Advance Care Planning No Barriers Here is a unique and innovative approach to advance care planning for people and communities who experience inequity accessing palliative and end of life care

Glancing back, thinking forward: End of life care planning for people with intellectual disabilities Guidance and a template document to write down end of life choices from the Trinity Centre for Ageing and Intellectual Disability, Ireland

Advance care planning toolkit: guidance for staff working with young people with learning disabilities developed by University of Surrey.
Easy-read summary of the toolkit 

Easy-read end of life care plans: templates

 When I die An example of a completed end of life book from Sunderland People First

Living well: Using person centred thinking tools with people who have a life limiting illness  A demonstration of how person-centred planning tools can be applied to end of life.

“What if”: celebrating my life Advance care plan and funeral plan from North East Lincolnshire NHS Care Trust

Breaking bad news / talking about death and dying

How to break bad news to people with intellectual disabilities Website with information and training materials for care givers of people with learning disabilities on how to break bad news. There is also a book by Irene Tuffrey-Wijne (2013)

The Books Beyond Words series Books designed for people with learning disabilities, using only pictures. This can help people understand what is happening, ask questions and make sense of their own experiences, including emotions. Relevant titles include:
Am I going to die?
Getting on with cancer
Anne has dementia

Talking end of life with people with intellectual disability A website from Australia containing information, training materials and resources on teaching people with learning disabilities about end of life and death

Loss, grief and mourning

Making a difference toolkit- End of life healthcare A collection of resources from the UK designed for people with intellectual disability and caregivers.

Grief and bereavement Resources from Connectability Canada to support a client who is grieving, such as creating a book of memories and planning for the anniversary of a death.

Helping people with intellectual disabilities cope with loss Tips and resources for caregivers to assist people with intellectual disability cope with loss.

The Books Beyond Words series Books designed for people with learning disabilities, using only pictures. This can help people understand what is happening, ask questions and make sense of their own experiences, including emotions. Relevant titles include:
When Dad died
When Mum died
When somebody dies

BackPocketTeacher provides training & support for everyone who works with children & adults with learning disabilities/SEND 

Screening

Leaflets and guidance from Public Health England

Breast screening: easy guide

Bowel scope screening: an easy guide

Cervical screening: an easy guide

Breast screening programme: supporting women with learning disabilities Information for health professionals to support women with learning disabilities to access breast screening.

Books Beyond Words

Pictorial books to help people with learning disabilities understand and cope with screening procedures

Keeping Healthy “Down Below” about having a smear test
Looking After My Breasts about breast screening
Looking After My Balls about testicular screening