Huntington’s in Mind: Improving mental health support in Wales

Happy St David’s Day!/Dydd Gŵyl Dewi Sant Hapus!

We thought this national day of celebration would be a good opportunity to update you on our work to improve mental health support for people living with Huntington’s disease in Wales. We know that this is an important issue for many of you. Almost half of people (44%) who responded to our recent campaign survey said we should prioritise improving mental health support for people with Huntington’s disease. 

We shared the findings of our mental health report with all seven local health boards in Wales. This has led to opportunities to work with health professionals to raise awareness of Huntington’s disease and mental health. Health boards are organisations responsible for planning and delivering NHS services in their areas.  

In January, we had a joint meeting with the Huntington’s disease services in North and South Wales. 

David Stephenson, Head of Policy and Public Affairs said,

“It was great to meet with colleagues in South Wales and the Huntington’s Disease Association. It was a good opportunity to share knowledge and identify opportunities to work together to improve patient care”

In February, we presented to NHS mental health professionals who support patients in Carmarthenshire, Ceredigion and Pembrokeshire (Hywel Dda University Health Board). Carol Davies, our specialist advisor for these areas, gave an overview of the relationship between Huntington’s disease and mental health, and explained her role.

In April we’ll be presenting at a Royal College of Psychiatrists event to mental health doctors across Wales on the need to improve specialist support for people living with Huntington’s disease. During this month, we’ll also be speaking to senior mental health doctors at Cwm Taf University Health Board, who support people living in Bridgend, Merthyr Tydfil and Rhondda Cynon Taf. This is to raise awareness of the challenges people with Huntington’s disease face in getting support from mental health services.

If you want to join us in fighting for better support for people affected by Huntington’s disease, you can sign up to be a campaigner. You'll be the first to hear about campaigns we’re planning and ways you can get involved.