Palliative care and Huntington’s Disease
To better understand how we could support people living with Huntington’s Disease and improve access to hospice care, Severn Hospice completed a grant funded service improvement project.
This page explains how we can support people with Huntington’s Disease (HD) at different stages of the illness. You’ll also find a referral framework and resources for healthcare professionals. The information is based on work co-produced with people living with Huntington’s Disease, family carers, healthcare professionals and partner organisations.
Why palliative care?
Huntington’s Disease affects movement, thinking, emotions, and behaviour, progressively changing over time. Alongside specialist neurological and community care, many people and families experience uncertainty about where to turn for additional support.
Specialist palliative care works alongside existing services to help people live as well as possible. It focuses on improving quality of life, supporting families, and helping people feel more in control of their care.
Palliative care is not only for the end of life. Many people benefit most when support is introduced earlier.
How Severn Hospice can help
All our support is free, works alongside other healthcare services, and is always optional. Our services are flexible and our support may vary depending on need. People find our help particularly beneficial during times of change, uncertainty, or when symptoms become more complex.
Our weekly social coffee mornings, held at our Shrewsbury and Telford sites, are a relaxed way to find out more about our services and the support available over a hot drink and a piece of cake – they are completely free with no booking required.
Why earlier support matters
People living with HD and families have told us that support often comes too late, and that earlier conversations make planning easier and more reassuring.
Earlier access to palliative care can offer more choice and control, better coordination of care, earlier support for the families as well as greater reassurance at every stage.
Palliative care is about living well, not giving up.
About this project
These resources were developed through co-production with people affected by HD, NHS Specialist Centres in Birmingham, Wrexham and Cardiff, the Huntington’s Disease Association (HDA), HD Voices, the Shropshire HDA support group and local health and social care partners. Our project, “Taking Action Earlier: Redefining Palliative Care in Huntington’s Disease for Lasting Impact“ was funded by the Freemasons’ Charity in partnership with Hospice UK (until August 2026).
