Support for you and your family earlier, not just at the end.
You are not alone
Living with Huntington’s disease can be challenging for both the person diagnosed and the people who love and care for them. Huntington’s disease can affect movement, thinking, emotions, and behaviour, often changing slowly over time. Even when many professionals are involved, families tell us they can feel alone and unsure who to ask for help as things become harder. They tell us they need safe spaces where they feel supported and heard.
Specialist palliative care offers extra support to help you live as well as possible alongside your usual care.
What is palliative care?
Palliative care describes care that supports people living with a serious illness with the aim to help you:
- Feel as well as possible
- Manage symptoms
- Get emotional and psychological support
- Tackle difficult questions and worries about planning ahead for the future
- Deal with the changes caused by your illness
- Make sure your wishes are understood, recorded and respected
I don't feel like a patient I am recognised as me and not a diagnosis - Claire
Hospices are organisations that provide specialist palliative care, they are free to access. Palliative care supports you, your family and carers to manage the impact of your Huntington’s disease, helping you to live as well as possible.
They lifted a weight off his shoulders and allowed him to carry on being a brilliant Dad. - Family member about Hospice support.
Is palliative care only for the end of life?
No - Palliative care can be helpful at any stage of Huntington’s disease. Many people find it most helpful when support starts earlier, rather than waiting until things feel overwhelming.
Think of palliative care as an extra layer of care, added to the care you already receive from your Huntington's disease team, GP, and other professionals.
Will palliative care take over my care?
No. Your usual doctors, Huntington’s disease specialists, GP, and other teams remain involved. Palliative care works alongside them, helping everyone work together and communicate better.
How can palliative care teams help in Huntington’s disease?
There are palliative care specialists in hospitals and also in many communities. Because everyone’s experience of Huntington’s disease is different, specialist palliative care is flexible and based on your needs.
Help with symptoms
- Palliative care can support people living with Huntington’s disease by helping manage symptoms such as:
- Pain, stiffness, movement problems, restlessness or agitation
- Swallowing or feeding difficulties
- Tiredness, sleep problems, or breathlessness
- Nausea, bowel or bladder problems
- Behaviour changes such as anxiety, low mood, or emotional distress
They work closely with your other healthcare teams to find the best approach for you.
Support for planning ahead
Huntington’s disease can affect thinking and decision-making over time. Palliative care can help you talk about what matters most to you and help you to make plans for the future whilst you are still able to make decisions. It can help you to think about decisions such as hospital care, feeding support, and other help around advance care planning and sharing your wishes. Many people find these conversations reassuring and empowering, not frightening.
Support for families and carers
Palliative care is not just for the person with Huntington’s disease. It can also:
- Support carers emotionally
- Help families feel listened to and included
- Support children and young people in the family
- Help during times of change or crisis
- Offer bereavement support when needed
Support when things change
Huntington’s disease does not follow a straight path. There may be times when things are stable, and times when support is needed more urgently. Specialist palliative care can step in either when symptoms worsen, when care needs to change or when the decisions feel difficult. They can also help during periods of crisis. The support you get can increase or reduce depending on what you need at the time.
Do I have to accept specialist palliative care?
No, it is always your choice. We understand that talking about palliative care can feel difficult. Support will always be offered at your pace. You can ask questions and take time to think about it. You don't have to accept all the support offered to you, just what suits your needs. You can also change your mind at any time.
Why are we talking about palliative care now?
If palliative care is spoken about earlier it would give people more choice, more control, and more support when it matters most. People living with Huntington’s disease and their families have told us that support often arrives too late which makes planning harder. Knowing help is available can bring reassurance to carers and family members.
It supports you and the people who care about you and can be involved at different times, depending on your needs. You are not alone, there is lots of support available
This information has been kindly shared by Severn Hospice to help anyone affected by Huntington’s disease. Please be aware that palliative care support varies depending on your location not all hospices offer the same services. We encourage you to contact your local hospice or Specialist Advisor to find out what is available in your area.
