People with Huntington's shouldn't be excluded from mental health services
We know that accessing mental health support has long been a challenge for people affected by Huntington’s disease. Thanks to the incredible voices of our community, we are delighted to share that NHS England has listened and change is happening.
‘Huntington’s in Mind’ is our campaign to ensure that people with Huntington’s can get the mental health support they need. We’ve been working with NHS England (the organisation which leads and manages the NHS nationally) to help ensure that people with Huntington’s disease do not face unnecessary extra barriers when they need to access mental health services.
We’re pleased to share that NHS England has now added to their guidance on adult and older adult mental health services to make clear that mental health services shouldn’t exclude anyone because they have a neurological condition, such as Huntington’s disease.
This update follows the publication of our mental health report (Unseen and Unheard) in 2024. Almost a third (29%) of people we surveyed said they or their relative were denied access to mental health services because of having Huntington's disease. For people who experienced this, 8 in 10 (81%) had worsening mental health, with some sectioned in a mental health hospital.
Our mental health campaign has also received support from health professionals. Earlier this year, 16 consultant neuropsychiatrists representing Huntington’s disease services across England, wrote to a committee of MPs carrying out an inquiry into community mental health services, calling for an end to referrals being rejected because someone has a diagnosis of Huntington’s disease. This clarification from NHS England now makes it explicitly clear that this practice is not acceptable.
“Mental health symptoms are a core part of Huntington’s disease and the treatment of these symptoms can make a tremendous difference to quality of life. Yet time and again, patients with Huntington’s are turned away from mental health services. We acknowledge that community psychiatric services are under significant pressure, however people with Huntington’s, and other neurological conditions, must have fair access to their local mental health services along with specialist support. That is why I am delighted with this update from NHS England - it is a big step forward for the Huntington’s disease community and all patients with neurological disorders seeking support with their mental health." Dr Akshay Nair, Co-Chair of the UK Huntington’s Network; Consultant Neuropsychiatrist, Regional Huntington’s Disease Service, Department of Neurology, St. George’s Hospital.
“Thank you to everybody who shared their experiences of mental health services and helped achieve this change. We also appreciate NHS England making clear that having a neurological condition should never lead to someone being denied mental health support. We’ll continue to build a better life for anyone affected by Huntington's disease, including by fighting for improved mental healthcare”. Cath Stanley, Chief Executive, Huntington’s Disease Association.
NHS England mental health update: full text
The new text is copied below and available here:
"Access to services
Mental health services shouldn’t exclude anyone because of any physical health diagnosis, neurodevelopmental condition (for example autism or ADHD) or neurological diagnosis (for example Huntington’s Disease, Parkinson’s or Dementia). Services should be offered based on need and the likelihood of them being helpful, rather than determined by these diagnoses.
Very often, adjustments to standard treatments can be made to adapt them if needed and services should bear in mind they ought to be making reasonable adjustments where necessary to support access to services and treatments.
In specific instances, some types of mental health treatment may not be possible to deliver or may not be helpful for some people because of particular communication, cognitive, or physical difficulties, and in this situation clinicians should advise on alternatives”.
