As we approach World Mental Health Day on the 10 October 2023, we are continuing this year's #MindfulOf Huntingtons with a campaign to demand access to mental health services for people affected by Huntington's disease. 

How can you get involved? 

Send this letter to your MP so they can write to the Secretary of State to demand action for access to mental health services for people with Huntington's disease .

You can find who your local MP is on the parliament webpage.

Letter template

Dear {Insert name of MP}

I am writing to you to ask you to send this letter to the Secretary of State.

Dear Secretary of State,

I am writing to you as I recently heard from the Huntington’s Disease Association (HDA) about the challenges those living with Huntington’s disease face.

For background, Huntington’s disease is a rare, genetic, neurodegenerative disorder that affects 8,000 people in the UK and up to 32,000 people live at risk of developing it. Since this complex disease is not fully understood, there is no cure and only limited treatment options are available to help manage symptoms.

Every child conceived naturally to a parent who carries the Huntington’s gene has a 50% chance of inheriting it. Symptoms can develop before the age of 20 - this is known as Juvenile Huntington’s disease, however, most develop symptoms between 30-50.

Based in Liverpool, the Huntington's Disease Association was founded in 1971 with the objective of providing support, advice and care for people living with Huntington’s disease in England and Wales. The charity supports people living with the disease and their families and carers.

On top of navigating life with an incurable disease, the Huntington’s community faces significant challenges in accessing the support, services and guidance they need to live the best life possible. This is particularly the case with accessing mental health services.

Huntington’s targets nerve cells within the brain causing a triad of symptoms: motor, cognitive and psychiatric, which get progressively worse. While the symptoms of the condition are different for everyone with the disease, psychiatric symptoms are extremely common.

In a recent community survey with 109 respondents about exclusion from mental health services, the Huntington's Disease Association found that 46% of respondents who have Huntington’s disease have experienced mental health issues. This corresponds with findings from the HDA’s survey of health and social care professionals - 99% of respondents said that patients they supported who are affected by Huntington’s disease have experienced mental health issues.

Despite the likelihood of people with the disease having mental health issues as a result of the condition, those affected are finding it very challenging to access mental health services when they need it. Often patients are declined from services just because they have Huntington’s disease, which is known as an ‘organic brain disorder’. This is an issue experienced across the country. This is backed up by the HDA’s recent professional survey, which found that 60% of patients were denied access to mental health services because of having Huntington's disease.

Of those who were declined access to mental health services, over a quarter of respondents said this was because of Huntington's disease being a neurological condition/organic brain disorder (28%). Over a fifth said it was because Huntington's disease is not seen as a condition with mental health symptoms (21%).

The Huntington's Disease Association are keen to ensure that this is stopped, as the condition has both physical and mental symptoms and limiting patient access to mental health services is worsening their mental health. Those denied access to services are more likely to end up in crisis situations - such as being admitted to hospital, being sectioned or increasing the risk of self-harm.

I would be grateful if you could discuss this issue with your team and see if it can be resolved, working with key partners such as the NHS England and Integrated Care Systems. In short, those affected by Huntington’s disease should be able to access mental health services when they present with mental health symptoms. This change would make an immeasurable difference to the quality of life people with Huntington’s disease have.

I look forward to hearing from you.

Yours sincerely,

MP signature

Thank you for your help in ensuring people with Huntington's disease have better access to mental health services. 

Yours sincerely,

Your name