Palliative care and Huntington’s Disease
At Severn Hospice, we wanted to better understand how we could support people living with Huntington’s Disease and improve access to hospice care. To do this, we carried out a service improvement project.
This page provides an overview of how we can support people with Huntington’s Disease at different stages of the illness. It is based on our project, “Taking Action Earlier: Redefining Palliative Care in Huntington’s Disease for Lasting Impact”, which was co-produced with people living with HD, family carers, clinicians and partner organisations.
Why palliative care?
Huntington’s Disease can affect movement, thinking, emotions, and behaviour, often 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
Hospice care is free, works alongside other healthcare services, and is always optional. Our support is flexible and can increase or reduce depending on need, particularly during times of change, uncertainty, or when symptoms become more complex.
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, HD Voices, and local health and social care partners. The project was funded by the Masonic Charitable Foundation in partnership with Hospice UK (until August 2026).
