Redefining palliative care in Huntington’s Disease
At Severn Hospice, we’re working to make palliative care for people with Huntington’s Disease more timely, compassionate, and tailored to individual needs.
Our project, “Taking Action Earlier: Redefining Palliative Care in Huntington’s Disease for Lasting Impact” aims to improve how and when people can access palliative care — support that focuses on comfort, dignity, and quality of life at every stage of the condition.
We’re working with people who have personal experience of Huntington’s Disease to:
- Understand how palliative care can best support daily life and future planning
- Identify when palliative care should start
- Help healthcare professionals make timely and appropriate referrals to palliative care
- Improve access to support within our local area
- Share learning to benefit the wider Huntington’s community
How you can help
We’d like to hear from people affected by Huntington’s Disease – whether you’re living with the condition, a family member, or a carer.
You can help by:
- Share your experience or awareness of palliative care in Huntington’s Disease
- Help us understand how and when to have care planning conversations
- Advise us on creating accessible, appropriate palliative care support services
You don’t need any special knowledge – just your perspective as someone living with, or caring for someone with Huntington’s Disease.
Take part by completing one or both of our short surveys (each takes around 10–30 minutes). Every response helps us build a clearer picture of what truly matters to families.
Questions? Email us at huntingtons@severnhospice.org.uk
About the project
This project is run by Severn Hospice and funded by the Masonic Charitable Foundation in partnership with Hospice UK.
