A mental health guide
Support
Huntington's in Mind: Striving for better mental health support.
Huntington’s disease and mental health: our report
Read our report, Unseen and Unheard, which sets out the challenges people living with Huntington’s disease face in getting mental health support and the changes that need to happen.
What we found
The mental health system isn't working for people living with Huntington’s disease.
When people seek help, mental health services can be reluctant to offer it. People tell us they have to wait until they reach a crisis point before support is offered. If someone’s referral is accepted by a mental health team, there is often a lack of understanding about their condition, which leads to poor care.
Our report sets out the findings of our 2023 surveys of both people affected by Huntington’s disease (109) and health professionals (83). It also includes case studies, which highlight the need to improve mental healthcare for people living with Huntington’s disease.
We found that:
- People are often unable to get the support they need from mental health services. Almost a third (29%) of people said they or their relative were denied access to mental health services because of having Huntington's disease.
- For people who were denied access to mental health services, 8 in 10 (81%) experienced worsening mental health, with some sectioned in a mental health hospital.
- Almost all of the health professionals we surveyed (99%) said the Huntington’s disease patients they supported had experienced mental health issues.
The changes that need to happen
Nobody living with Huntington’s disease should struggle to get the mental health care they need. Our recommendations are for the UK Government, Welsh Government and NHS providers and commissioners to:
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Improve support offered by community mental health services to people living with Huntington’s disease.
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Ensure that every person living with Huntington’s disease has a named health or social care
professional, who can coordinate their care and act as a local expert on their care needs.
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Give every person with Huntington’s disease access to specialist mental health support.
Ychydig sy’n sylweddoli bod byw gyda chlefyd Huntington yn gallu effeithio ar iechyd meddwl. Mae ein hadroddiad diweddaraf yn ymdrin â’r problemau iechyd meddwl mae'n cymuned yn eu hwynebu, a’r cymorth sydd ei angen.
Mental health news
Psychosocial impacts and support needs of young people in Huntington's families
Studies
Unseen and Unheard - Mental Health in Huntington's disease
Awareness, Campaigning
United for change in Parliament
Awareness, Campaigning
Mental Health - an update
Campaigning
Access to mental health - your opinion
Campaigning, Professionals
How you can get involved
Join us and help campaign for better support for people affected by Huntington’s disease. When you sign up to be a campaigner, you'll be the first to hear about campaigns the Huntington’s Disease Association is planning and ways you can get involved. Please tick the campaign box below when you fill out the form.
