Learning disabilities and dying well
Talking about dying can be difficult, but it happens to all of us and people with learning disabilities may find information helpful and comforting. You may find it helpful to have someone be with you whilst you read this information.
Bereavement means that someone close to you has died, this might be your family, your partner, or friends.
Advanced care planning means to make clear plans that helps families and carers to respect a person’s choices about their health. It may explain how they would want to be cared for as they prepare to die. Making an advanced care plan can be done at any time in your life.
My_future_wishes_West Yorkshire Easy Read
Coping with Death: Making a Will Video
Coping with Death: Advanced Decisions Video
End of Life Care Planning Toolkit| Victoria and Stuart
Talking About Dying is a coproduced project which provides accessible resources and training created and presented by people with learning disabilities from their lived experience.
The aim of the training is to provide guidance to services, carers and families to support people with learning disabilities to think about the kind of care they would like to receive at the end of their lives.
The training demonstrates the use of The Victoria and Stewart Project Toolkit, No Barriers Here and My Future Wishes to support these discussions.
Local information and support in Kirklees
- Kirklees learning disability website– with video.
- Family Care Team – Kirkwood Hospice. Provides support to help with bereavement caused by being unwell.
- 01484 557908.
- Family Care Team
- Cruse Bereavement Care. Cruse offers face-to-face, telephone, email and website support.
- National helpline: 0808 808 1677
- Website: https://www.cruse.org.uk/
- Mencap. Information on dealing with a loss, including resources about how to discuss death with a person with a learning disability .
- Dealing with bereavement and support with grief | Speak to a bereavement counsellor | Mencap
- Grief Chat Easy Read.pdf (mencap.org.uk)
Marie Curie
Marie Curie provides information for bereaved family and friends.
- Coping with grief
- Coping with grief as a teenager
- Supporting a child when someone dies
- Organising a funeral
- Practical, legal and financial matters
- 0800 090 2309 (Calls are free from landlines and mobile phones)
- www.mariecurie.org.uk/help/support/bereaved-family-friends
- Easy Read
The Government website includes practical information on what to do when someone dies
Winston’s Wish.
Support and information for bereaved children, young people and families.
There is also an interactive website with resources for young people, parents/carers, schools and professionals.
- 088 020 021 (Freephone)
- Website: www.winstonswish.org.uk
Professionals and care providers
Inclusion North have crated a video to help support clinicians having end of life conversations with patients who have a learning disability. https://youtu.be/68MzoA8Veuw
- The NHS England
- Bereavement support for people with learning disabilities and their carers
- Palliative Care for People with Learning Disability
- Mencap. Information on dealing with a loss, including resources about how to discuss death with a person with a learning disability
Healthwatch Kirklees and Dying Well
Healthwatch Kirklees has worked with local people to create a report which was launched at the Dying Well event in 2023
dying-in-kirklees-what-matters-dying-well-kirklees (healthwatchkirklees.co.uk)
You’ll see that one of our recommendations is around improving training for staff who support people with Learning Disability so that they feel better equipped to have conversations about dying and grief.
LeDeR
Learning from Lives and Deaths of people with a learning disability and autistic people (LeDeR).
To find out more or to report a death please visit the LeDeR nhs website
Do Not Attempt Cardio Pulmonary Resuscitation orders (DNACPR)
A Do Not Attempt Cardio Pulmonary Resuscitation order is a medical document.
This is sometimes called DNACPR or DNAR or DNR.
DNACPR is the official name. Learning Disability England have made an easy read document to help people learn more about it DNR: A guide for understanding your rights and challenging decisions – Learning Disability England
“The terms “learning disability” and “Down’s syndrome” should never be a reason for issuing a DNACPR order or be used to describe the underlying, or only, cause of death … Learning disabilities are not fatal conditions.”
In May 2019 the National Medical Director, Professor Stephen Powis, wrote with regard to Learning disability, death certification and Do Not Attempt Cardio Pulmonary Resuscitation orders (DNACPR)orders, emphasising that:
These universal principles should be used to drive improvements in inclusion, equality and diversity everywhere across the country.
The Learning Disability England Support pack has information for professionals about Do Not Attempt Cardio Pulmonary Resuscitation orders (DNACPR) including template letters
Easy read checklist about DNACPR.
DNACPR Information Pack (turning-point.co.uk)
The Care Quality Commission review of Covid-19 and DNACPR.
The ReSPECT document and process helps health staff understand what is important to you if you became seriously unwell.
ReSPECT for patients and carers | Resuscitation Council UK
ReSPECT :: West Yorkshire Health & Care Partnership (wypartnership.co.uk)