A campaign has been launched to highlight the mental health impact of Huntington’s disease and the need for equitable access to support services.
Huntington’s In Mind comes in response to findings around mental health challenges of people living with the disease, and the current lack of access to suitable services.
The campaign, to coincide with Huntington’s Disease Awareness Month in May, is designed to raise awareness of the needs of people with the rare, incurable, hereditary and degenerative disorder of the brain.
Launched by the Huntington’s Disease Association, the campaign has been developed with the community and centres around the stories of three families affected by Huntington’s disease.
Their stories, told via films to be released through the month, each highlight the mental health impact and challenges in accessing mental health support, while also offering some encouraging and inspiring reflections of hope and advice.
Huntington’s in Mind – supported by HDA patron and actor George Rainsford – launches as new research identifies substantial gaps in the numbers of specialist centres being able to access mental health professionals.
Centres treating Huntington’s disease describe access to services as “inadequate”, with many centres reporting that less than 25 per cent of people living with Huntington’s disease are able to access psychologists, psychiatrists, or counselling when required.
Many services also report limited access to community mental health support, with some people living with Huntington’s disease excluded due to lack of awareness by health care professionals.
Professor Hugh Rickards, consultant neuropsychiatrist and chair of the Huntington’s Disease Association, said: “I see first-hand the challenges faced by patients, who must firstly deal with the psychological issues of their diagnosis but then the complex mental health impacts that the disease itself causes.
“This is not widely recognised or understood and at an institutional level, so we need to do more to ensure people living with Huntington’s disease and mental illness have the same access to specialist mental health services as people living with other conditions like schizophrenia.”
The multi-faceted nature of Huntington’s disease and the complex testing process means that even if not directly impacted by Huntington’s symptoms, the mental health burdens can ripple across families.
The psychological and emotional impact goes beyond diagnosis and is complicated by the aetiology of the disease itself, which impacts mental health as it progresses.
A Huntington’s disease community survey carried out last year highlighted that 69 per cent of those who are symptomatic have experienced significant problems with their mental health, with 71 per cent of carers feeling that their mental health has been severely impacted as a result of their caring responsibilities.
Furthermore, 72 per cent of family members who tested negative for the gene felt guilt or shame about relatives who do, or who may, have Huntington’s.
Cath Stanley, chief executive of Huntington’s Disease Association, said: “Many find it difficult to receive equitable access to information and specialist services leading to limited physical and mental support following diagnosis.
“We know people living with Huntington’s disease can often fall into a referral loop due to a lack of understanding of how their condition affects mental health.
“We need to do more to educate health care professionals to recognise and provide the right mental health support at the right time for people living with Huntington’s disease. That is why we are determined to raise awareness around particularly the mental health issues around living with the condition so that those affected feel they are adequately supported.
“The Huntington’s in Mind campaign marks the beginning of a longer journey to ensure equitable access to mental health services.”