More than half of Huntington’s disease patients have been denied access to mental health services because of having the condition, new research has shown.
The research also indicates that, of those who were refused access, 92% of professionals said their patients’ mental health deteriorated – just over one in 10 (12%) of these people were eventually admitted into hospital or reached a crisis point, with 11% being sectioned.
These concerning new figures come from the Huntington’s Disease Association (HDA) which, with the support of MPs and various public figures, has recently launched its new Mindful of Huntington’s campaign.
Marking Huntington’s disease awareness month, the new campaign is looking to inform people of the affect the disease has on people cognitively and how the non-physical symptoms can impact mental health.
The HDA’s chief executive, Cath Stanley, explained: “Many people think of Huntington’s as a disease which impacts movement, but that is only half the story, and the non-physical symptoms are often overlooked. At the HDA, we find people will most commonly be referred to mental health services due to cognitive symptoms such as irritability and aggression.
“Throughout May, we will be focusing on these cognitive symptoms and the life changing impact they can have. The stark findings we’re announcing can’t be ignored – people are asking for much-needed mental health support, being turned away, and their health is deteriorating further. It is disappointing but not surprising to see that there’s still a lot of misunderstanding around Huntington’s.”
As part of the campaign, the organisation will today host an event in Parliament with Hilary Benn MP in a bid educate policymakers on Huntington’s and explore what can be done to improve service provision.
During the event, the HDA will cover a range of key topics, including:
- Access to mental health service when patients are presenting psychiatric symptoms;
- Care co-ordinators being in each area to efficiently signpost relevant services;
- Fleshed-out guidelines from the National Institute for Health and Care Excellence to ensure consistency of care;
- An investigation into why people can’t join the armed forces unless they’ve tested negatively for the disease.
Hilary Benn, who is the MP for Leeds Central and a Huntington’s disease champion in Parliament, added: “People living with Huntington’s and their families face extraordinary challenges, and I have seen first-hand the huge impact it has on people’s lives. Through the Mindful of Huntington’s campaign, we want to focus particularly on the less visible symptoms of Huntington’s – the cognitive ones and their debilitating effects.
“We are calling for improved access to mental health services, specific guidelines to ensure consistent care, and additional financial support to offset unavoidable costs such as higher energy usage associated with symptoms of the condition because the current level of provision is simply unacceptable.
“Action now will really make a difference and will ensure families get the support they need and deserve.”
