Over half of people with Huntington’s Disease are being denied access to mental health support services because of their condition

  • Huntington’s disease is a rare incurable, hereditary and degenerative disorder of the brain which significantly reduces life expectancy.The cognitive and behavioural symptoms of the disease can both directly cause and exacerbate mental health problems.
  • New research reveals that for patients denied access to mental health support services, the majority (92%) of professionals said that their patients’ mental health worsened.
  • Huntington’s Disease Association launches Mindful of Huntington’s, a campaign raising awareness of the cognitive impairment symptoms and calling for greater access to adequate mental health for people living with the disease.

New findings from the Huntington’s Disease Association (HDA) reveal that over half (56%) of patients have been denied access to mental health services because of having Huntington's disease.[i] While 85% of patients living with Huntington’s have tried to access community mental health services, of those denied access, 92% of professionals said that their patients’ mental health worsened with over 1 in 10 (12%) of this group ultimately admitted to hospital or reaching crisis point, and an alarming 11% being sectioned.

Huntington’s disease damages nerve cells within the brain, progressively impacting movement, behaviour, and cognition, usually from mid-adult life.1 Neurological symptoms include irritability, sudden mood change, depression, and problems with memory, thinking and judgement.[i] The Mindful of Huntington’s campaign, led by the HDA and backed by celebrities and MPs, aims to raise awareness of Huntington’s disease related cognitive impairment and how non-physical symptoms can impact on mental health and quality of life.

Cath Stanley, Chief Executive of the Huntington’s Disease Association, said:

“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 Huntington’s Disease Association, 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"

Alex Fisher, Senior Occupational Therapist, Clinical Lecturer and HD Module Lead on the UOB MSc Neuropsychiatry comments:

“We often take for granted things like the speed of our thinking, our ability to recall information or problem solve, or even simply how we process language when someone is speaking to us. These cognitive processes can be hugely impacted for someone living with Huntington’s disease. When you think about these things, you can really start to imagine how simple daily tasks, such as washing, cooking safely, cleaning, remembering medication and medical appointments – all the basic things that keep someone safe and healthy can become much more challenging. As well as daily tasks, things like relationships and social interactions become compromised, and this understandably leads to a lot of frustration and demoralisation. These are what we would sometimes call ‘hidden disabilities’ as they can’t always be seen.”

Throughout Huntington’s Disease Awareness Month, the HDA are campaigning for better services and support, and will be hosting a parliamentary drop-in event alongside Hilary Benn MP on the 10th of May. 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:

  1. Access to community mental health services when psychiatric symptoms are present
  2. 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
  3. Specific NICE guidelines for HD to ensure there is consistent care for this complex illness
  4. A review of the blanket refusal to entry to the armed forces unless proof of negative test

Actor George Rainsford (Casualty, Call the Midwife) and patron of the HDA, 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. 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.”

If you're struggling with Huntington's disease, or your family or loved ones are, or if you want to find out more about the Mindful of Huntington’s campaign, information is available on the Huntington’s Disease Association website at www.hda.org.uk/get-involved/campaiging/huntingtons-disease-awareness-month-2023/.  

NOTES TO EDITORS

About Huntington’s disease

Huntington’s disease affects the body’s nervous system – the network of nerve tissues in the brain and spinal cord that co-ordinate your body’s activities. This leads to progressive deterioration – physically, cognitively, and mentally until the individual becomes dependent on the help of others. Symptoms include motor (movement), mental health (for example mood) and cognitive (for example learning and thinking) disturbances, which in most cases appear in mid-adult life.1

 

Huntington’s disease affects around 8,000 people in the UK or 1 in 10,000 people.[i] Up to 32,000 people in the UK live at risk of developing the disease.4 It can start at any age, but symptoms usually first appear between ages 30 and 50. Symptoms gradually get worse over 10 to 25 years until the person dies. Every child conceived naturally to a parent who has the faulty Huntingtin gene that leads to Huntington’s disease has a 50% chance of inheriting it.1

 

 References:

[i]  Huntington’s Disease Association. Impact Report. 2019. Available at: https://www.hda.org.uk/media/3014/impact-report-2019-final-3.pdf [Accessed 14 April 2023].

[1] Huntington’s Disease Association. What Is Huntington's Disease. Available at: https://www.hda.org.uk/huntingtons-disease/what-is-huntingtons-disease/symptoms-of-huntingtons-disease [Accessed 14 April 2023].

[1] Mindful of Huntington’s survey “Access to mental health” Health care professionals survey. Conducted online 26 February 2023 to 14 April 2023. Data available on file.

[1] Huntington’s Disease Association. Huntington’s disease symptoms. Available at https://www.hda.org.uk/information-and-support/huntingtons-disease/huntingtons-disease-symptoms/ [Accessed 14 April 2023].

[1]  Huntington’s Disease Association. Impact Report. 2019. Available at: https://www.hda.org.uk/media/3014/impact-report-2019-final-3.pdf [Accessed 14 April 2023].