Treetops Hospice is a peer support group that runs in partnership with the Huntington’s Disease Association. 

Treetops and the support group have been phenomenal. There’s support for me, support for my husband as a carer, and support in place for our children. It’s been life-changing.

The group is for people living with Huntington's disease, along with their family members and caregivers. They can share experiences, offer and gain advice and support, all in a welcoming environment. The group meets monthly, as well as hosting special themed events for Awareness Month, Odds And Socks Day, and Christmas.

Huntington’s Disease Association Specialist Adviser, Lindsey Hughes, plays a key role in organising and attending these support groups. Lindsey said:

Not long after joining the Huntington’s Disease Association, I became aware of how few services were available in Derbyshire for families living with Huntington's disease. Two separate families with young men with Huntington's disease asked me if there was anyone similar to them, which prompted me to approach Treetops about hosting a Huntington's disease group there to provide a safe space for families to come together, which they agreed to.

Treetops provides the venue and volunteers, plus staff are also on hand to support if needed. They will let group members know about any events they are hosting that may be of interest to the people attending. The group has gone from strength to strength, with a number of families who attend the meetings on a regular basis. Over the years, the group have enjoyed fun activities together and the group members have created a strong community who support one another.

The importance of support groups

Huntington’s disease doesn’t just affect one person, it affects whole families. The progressive nature of the condition, combined with its genetic impact, can create uncertainty, fear and emotional strain for everyone involved.

Support groups offer a safe space where people don’t have to explain themselves, where they have a shared understanding of the symptoms and changes that they or their loved ones are going through. 

Anne-Marie was diagnosed with Huntington’s disease two years ago and has been attending the support group with her husband Richard for just over a year. She describes the early months after her diagnosis as incredibly difficult.

Coming to terms with having the disease and knowing that your mental capacity is deteriorating is a real challenge. This time last year, I wasn’t myself. I was sad and depressed. [At Treetops] you can share experiences with others in a similar situation and it’s sociable. The support Treetops has to offer keeps your quality of life for as long as possible.

Treetops doesn’t just support Anne, but her husband and children. Both family carers and other family members need to get support as well. Caring for a loved one can be emotionally draining and physically demanding.

Anne’s husband, Richard, also attends the support group and explains the impact it has on him.

Although I enjoy caring for Anne-Marie, coming here is a break and I can relax. It’s like a battery recharge. At home I’d be thinking, the washing’s on, I need to do the ironing, what shall we have for tea. But here, that’s all gone.

Support groups like this play a vital role in improving the quality of life for people living with Huntington’s disease and those who care for them. They provide understanding where it’s needed most, reduce isolation and create a strong sense of community.

Whether you’re living with Huntington’s disease, supporting someone who is, or looking for ways to help, peer support makes a lasting difference.