Today we have launched our report Unseen and Unheard: The Need to Improve Mental Healthcare for People Living with Huntington’s Disease.
This report highlights the mental health challenges faced by people living with Huntington’s disease community and sets out recommendations for change.
If you are a person living with Huntington’s disease who is struggling with your mental health then you want help from professionals who understand your needs and how to offer support. We’ve found that time and again this isn’t happening.
Young people who at risk of Huntington’s grow up in the shadow of the disease, facing daunting choices around starting a family and genetic testing. Many people also care for relatives with Huntington’s disease while coping with worries about developing the disease themselves. The damage to the brain caused by Huntington’s disease can have a profound impact on a person’s mental health. Almost all of the 83 health professionals we surveyed (99%) said the Huntington’s disease patients they supported had experienced mental health issues.
“As a partner of an Huntington’s disease sufferer, I have been on the receiving end of aggression/mood swings. We (partners/carers) also need help which is difficult to come by. Was advised by a consultant/GP to contact the local mental health crisis team in an emergency. There was an emergency one weekend and the mental health crisis team was useless as they had no idea what Huntington’s disease was.”
Family member
The UK government committed in its manifesto to giving mental health the same attention and focus as physical health. A priority for NHS England in 2024/2025 is to improve access to mental health services so that more people of all ages receive the treatment they need. We support these goals but fear that the mental health needs of people with rare diseases, such as Huntington’s disease, are being overlooked.
We’re calling for people living with Huntington’s disease to have improved support from community mental health services, access to a health professional who is a local expert on their care needs, and investment in specialist mental health support.
It’s clear that many NHS mental health services are not meeting the needs of people living with Huntington’s disease. We’re delighted that Mind’s new ‘Big Mental Health Report’, which also launched today, is calling for services and interventions that address current gaps in NHS funded provision, including for people with long-term physical health conditions.
Nobody with a Huntington’s disease diagnosis should struggle to get the mental health care they need. We will now be working alongside people living with Huntington’s to push for change.