Greater opportunity for peer support and community involvement.
AGM and family conference
The decision on whether the conference had to be held in person or online had to be made earlier in the year, due to the uncertainty of Covid. The online conference was well attended and the speakers were recorded to be shared as online webinars. We were pleased to have join us our patron George Rainsford, Nicci Robertson shared an update on Enroll HD, Chloe Holmes shared her journey with HDYES and Jenny Townhill gave a clinical trials update. At the conference, we premiered our new co-created animation that explains ‘What is Huntington’s disease?’ Feedback about the animation included:
“This is great” "When can we see this on TV?"
We asked attendees what they wanted for the next AGM through online polls, making sure the community’s opinions were at the heart of our decision-making for next year’s conference.
We were delighted to create a new post this year, the new Volunteer Manager whose responsibilities include supporting Branches and support groups. Branches and support groups play a big part in our community and we now need to do more to ensure these groups are supported. The role also includes supporting the wider volunteer network.
Juvenile Huntington's disease weekend 3 - 5 June
This year we were excited to return to the Calvert Trust for our first in-person family event in three years. The weekend was packed full of activities for those affected with Juvenile Huntington's disease and their families. It is always very powerful to see the families all together and see them relax together as the weekend progresses. Some of the young people as well as some of the parents have made some really deep friendships which have continued outside of the weekend. A comment which regularly comes up on the evaluation forms is that this is the one environment where they feel they can completely relax.
“A welcoming and informative weekend where there is no shortage of chat and laughter as well as the opportunity to make new friends.”
- Weekend attendee
Isle of Man event
The year also saw a return to family days, as mentioned previously the Isle of Man held a successful event with over 100 professionals attending. Other family events included Brockenhurst and Hampshire family days. It was fantastic to see people from the community connect again.
Peer support and counselling
We continued to offer online support through a mix of peer support groups for carers and families affected by Juvenile Huntington's disease. These events are well-attended and offer an easy way for people to stay connected.
We trialled Narrative Therapy a respectful, non-blaming approach to counselling and community work which centres people as the experts in their own lives. The sessions were received extremely positively and narrative therapy as a tool to support people will continue to be a feature on the events calendar.
“Made me realise I have a lot of skills, people, beliefs and hopes to help me when facing challenges. I felt lighter, less burdened and able to cope with difficulties in a more positive way”
- Narrative therapy attendee
Policy and Public Affairs
With a new Policy and Public Affairs Manager recruited we could begin work on our policy asks. Our top five policy asks are:
- Access to community mental health services when psychiatric symptoms are present
- A named care coordinator in each area to ensure people can navigate the many professionals they need and those professionals have knowledge and understanding of this disease
- Specific NICE guidelines for Huntington’s disease to ensure there is consistent care for this complex illness
- A review of the blanket refusal to enter the armed forces unless have had a negative predictive test
- Uplifting of benefits to reflect inflation as many people with Huntington’s disease have higher energy and nutritional needs
Key successes already include:
- Increased awareness of the problem of mental health in people affected by Huntington's disease
- Agreement by Hilary Benn MP to become a parliamentary champion for the Huntington’s Disease Association - it an honour to have such a well-respected MP supporting our cause
Hilary Benn organised a Westminster Hall debate in the Autumn of 2022, to engage MPs on the issue of Huntington’s disease and raise awareness of the issues members of the community were facing with the government. Ahead of the debate, Huntington's Disease Association staff briefed Hilary Benn, ministerial advisors and MPs. A briefing was sent to all politicians about Huntington's disease, the main issues and our policy asks. A dozen MPs attended the debate, with a good spread of MPs from across the country and different political parties. MPs eloquently raised the big issues facing those with Huntington’s disease at present - from the postcode lottery of services, the need for NICE guidelines, to the exclusion to mental health services that so many are experiencing. Helen Whately, the Social Care Minister attended the debate on behalf of the government and agreed to take away several actions: looking into NICE guidelines for Huntington’s, the exclusions to mental health services and the possibility of having a named care coordinator for Huntington’s disease in every part of the country.
While these issues were being looked into by the minister behind the scenes, the public affairs work switched to building a stronger base of support with more MPs, Lords and Baronesses.