A Severn Hospice project: improving palliative care for Huntington’s disease
Severn Hospice is leading a service improvement project to reshape how and when palliative care is introduced for people living with Huntington’s disease (HD).
The aim of our project is to develop a Huntington’s disease referral framework that supports earlier identification of patients who could benefit from palliative care – ensuring timely, compassionate support for individuals and their families.
Our project, “Taking Action Earlier: Redefining Palliative Care in Huntington’s Disease for Lasting Impact” is funded until August 2026 by the Masonic Charitable Foundation in partnership with Hospice UK.
Project goals
Develop a referral framework: Created collaboratively with Huntington’s specialists to guide the timing of palliative care conversations and referrals.
Encourage earlier referrals: Helping professionals bring palliative care into the picture sooner, to improve quality of life for patients and their families.
Improve local access: Lay the groundwork for a dedicated Huntington’s palliative care service at Severn Hospice, shaped by the needs of local patients and families.
Work together: Collaborating with NHS HD Specialist Centres (Birmingham, Wrexham, Cardiff), local health and social care teams, the Huntington’s Disease Association professionals, HD Voices, and community groups to share learning and shape better care.
A collaborative approach
Our project is a joint effort, developed with those who know Huntington’s disease best – specialist clinicians and allied health professionals, caregivers, and most importantly, people living with the condition.
We are actively working with regional HD Specialist Centres, local health and care professionals, HD Voices, local support groups and the Huntington’s Disease Association.
Together, we aim to create a clear, practical framework that supports earlier, person-centred palliative care.
Get involved
Are you a healthcare professional, carer, or individual affected by Huntington’s disease? Your experiences and insights can help us shape and improve palliative care for people with HD – particularly during this project’s active period – and we’d love to hear from you.
Contact us: huntingtons@severnhospice.org.uk
