More than half of people living with Huntington’s Disease have been denied access to mental health services because of their condition, shocking new research has revealed.
While 85 per cent of patients with Huntington’s have tried to access community mental health services, of those denied access, 92 per cent of professionals said their patients’ mental health worsened.
More than one in ten – 12 per cent – of this group was ultimately admitted to hospital or reached crisis point, with 11 per cent sectioned, the Huntington’s Disease Association (HDA) research has found.
The Mindful of Huntington’s campaign, led by the HDA and backed by celebrities and MPs, has been inspired by such dire need for mental health support.
The campaign runs throughout this month – Huntington’s Disease Awareness Month – and is targeting raising crucial awareness of Huntington’s-related cognitive impairment and how non-physical symptoms can impact on mental health and quality of life.
“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,” says Cath Stanley, chief executive of the HDA.
“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.”
Huntington’s disease damages nerve cells within the brain, progressively impacting movement, behaviour, and cognition, usually from mid-adult life.
Neurological symptoms include irritability, sudden mood change, depression, and problems with memory, thinking and judgement.
Throughout the month, the HDA are campaigning for better services and support, and is hosting a parliamentary drop-in event alongside Hilary Benn MP. The event aims to educate policymakers around the challenges faced by people living with Huntington’s including how the condition affects cognition and what needs to be done to improve services.
Hilary Benn MP, who is a Huntington’s disease champion in parliament, said: “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.”
At the parliamentary event, the HDA will address government with the following key asks:
- Access to community mental health services when psychiatric symptoms are present
- A care coordinator in each area to ensure people can navigate the many professionals they need, and those professionals have knowledge and understanding of this disease
- Specific NICE guidelines for HD to ensure there is consistent care for this complex illness
- A review of the blanket refusal to entry to the armed forces unless proof of negative test
Actor George Rainsford, HDA patron whose character Dr Ethan Hardy in Casualty was diagnosed with the condition, said: “Through the role I’ve played in Casualty, I’ve worked closely with the HDA, and several families impacted by Huntington’s disease.
“Something that really struck me was how often the cognitive changes that people with Huntington’s disease experience are overlooked or forgotten about.
“It’s often the physical symptoms that get the focus, yet the ‘invisible’ cognitive changes have a profound effect on a person’s ability to manage daily life.”
Celebrity impressionist, actor and singer Jess Robinson, is also backing the campaign.
“I’ve seen how my sister Jojo deteriorated with the neurological symptoms of Huntington’s. She used to be a professional Jazz pianist – now, heartbreakingly, she can barely remember how to play her favourite song,” she said.
“While Jojo tested positive for the gene in 2005, her increasing paranoia and psychotic behaviour wasn’t actually linked to the disease until after she was sectioned in 2018. It was so devastating to see her go through this.
“The cognitive symptoms of Huntington’s disease often go under-acknowledged and if someone isn’t displaying physical symptoms, it can be extremely difficult to access support.”
