Resources

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 websites and resources should not be seen as an endorsement. Although regular checks are made, the availability of linked pages cannot be guaranteed.

We would like to keep this page as relevant and up to date as possible. Do let us know if you are aware of any resources that we might include. Please note that we only include resources with direct relevance to the end-of-life and bereavement support for people with learning disabilities.

We have now included information and resources related to coronavirus. People with learning disabilities will be particularly affected by the challenges of illness, death and bereavement from coronavirus. This information changes quickly and may be different depending on where you live.

Covid-19

There are various other places where you can find up-to-date guidance and resources. The following are good places to go to:
Learning Disabilities Health Intelligence Network
Down Syndrome Association
LDCoronavirusResources
Mencap

Easy-read resources about Covid-19

Coping with coronavirus picture books  & guides free downloads from Books Beyond Words
Covid-19 guided self-help booklet series from Scottish Commission for Learning Disability
Coronavirus Poster Set from Photosymbols

Planning ahead / advance care planning
Jack plans ahead for coronavirus: a guide for family and carers free download from Books Beyond Words
Advance Care Planning Guidance for Coronavirus and Learning Disabilities from Mary Stevens Hospice and Dudley Voices for Choice
Covid-19 Hospital Communication Passport and supporting resources from Include Me TOO

Bereavement support
When someone dies from coronavirus: a guide for family and carers free dowload from Books Beyond Words
Let’s talk about… when someone is ill or dies from coronavirus Resource to support conversations with people with learning disabilities online, from Books Beyond Words
Keeping in touch when you can’t be with someone who is so ill that they might diefrom National Bereavement Alliance

Resources and guidance for health and social care professionals

Coronavirus (COVID-19) guidance for health professionals and other organisations, from Public Health England
Guidance on protecting the most vulnerable people, from Public Health England
Visitor guidance from Public Health England (incl: people with learning disabilities can have one visitor if needed)
Providing community palliative care Various guidance documents available on the Resource page of the Royal College of General Practice, including symptom control and providing support to carers

Academic articles
Guidance for the treatment and management of COVID-19 among people with intellectual disabilities R.Alexander et al. Journal of Policy and Practice in Intellectual Disabilities, May 2020

 

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 

American Association on Intellectual and Developmental Disabilities (AAIDD) 

 

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

White Paper on Intellectual Disability and Palliative Care from the European Association of Palliative Care (EAPC) A document from the European Association of Palliative Care (2015), setting out 13 norms for good practice, as well as background information and resources.

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).

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

A Good Death Guide for learning disability staff A guide about end of life care for staff and carers of people with learning disabilities.

A Good Death Guide for acute and palliative care staff A guide about working with people with learning disabilities, for staff in acute and palliative care settings.

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

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

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 

An easy to read guide to making a will An example from Ireland about will making, designed for people with intellectual disability.

Wills for people with intellectual disability A fact sheet about making a will, published by the Intellectual Disability Rights Service in Australia.

Advance decisions and Do Not Attempt Resuscitation decisions (DNAR) Explanation and guidance for staff and carers, about DNAR orders for people with learning disabilities

Easy-read cardio-pulmonary resuscitation (CPR) information

Easy-read end of life care plans: templates

Taking control: my end of life support plan Easy-read end of life care plan from Treat Me Right! 

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

My end of life choices book A template document to write down end of life choices from Australia.

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

My funeral wishes: Get peace of mind by planning ahead Information about the kinds of wishes that some people make for their funeral, from Dying Matters

Let’s talk about death An easy-read booklet about death and funerals for adults who have a learning disability,  from Down’s Syndrome Scotland

 

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

PicTTalk: Keele University PC compatible software designed by and for people with intellectual disability that can be used to facilitate conversations about illness, life, the impacts of illness, and the future.

A Good Death An easy-read resource to help people with learning disabilities understand end of life choices, dying and death.

Dying matters A wide range of resources to help people in the general population think and talk about dying, and plan ahead for the end of life. Many of the resources are also suitable for people with learning disabilities.

 

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

Grief and loss An easy read document about grief and loss developed by NSW Health.

Loss and learning disability, a book by Noëlle Blackman (2003). This book is for care staff, therapists and counsellors working with people with learning disabilities. It explains 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’.

 

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