Written evidence submitted by Huntington’s Disease Association (CMH0094)
Response: Health and Social Care Committee’s Community Mental Health Services Inquiry
About us
We are the Huntington’s Disease Association. Our aim is to help people living with Huntington’s disease in England and Wales to live a better life. We provide support for people with Huntington’s disease and their families, educate health professionals, and champion people’s rights.
About Huntington’s disease
Huntington’s disease is a rare, genetic, neurodegenerative disorder and there is no cure. Around 8,000 people in the UK have the condition. It is caused by a complex genetic mutation that leads to widespread and irreversible brain damage, making it difficult to develop effective treatments. Despite ongoing research in areas like gene therapy, current treatments can only help to manage symptoms rather than stop or reverse the diseases progression. Every child conceived naturally to a parent who has the faulty Huntington gene has a 50% chance of inheriting it. If a person is 18 or over they can take a genetic test to find out if they have the faulty gene.
Symptoms of Huntington’s disease can include:
● Movement (movements may happen that you don’t expect, while doing what you want to do becomes more difficult)
● Cognitive (difficulties in thinking and processing information)
● Mental health (changes in behaviour and personality)
Symptoms can start at any age, but they commonly appear between 30 and 50. Huntington’s disease is usually fatal after a period of up to 20 years. In the later stages of the disease, people will find communication and daily activities increasingly difficult and need full-time nursing care.
Our response
Summary
We welcome the Health and Social Care Committee’s inquiry into community mental health services and would value the opportunity to provide oral evidence at a later stage of the inquiry.
People living with Huntington’s disease and their families face significant challenges throughout their lives. Young people who are at risk of Huntington’s grow up in the shadow of the disease, facing daunting choices around starting a family and genetic testing. Many people also care for relatives with Huntington’s disease while coping with worries about developing the disease themselves. The damage to the brain caused by Huntington’s disease can have a profound impact on a person’s mental health. Almost all of the 83 health professionals we surveyed (99%) said the Huntington’s disease patients they supported had experienced mental health issues. When people living with Huntington’s disease seek help, mental health services can be reluctant to offer it. People tell us they have to wait until they reach crisis point before support is offered. If someone’s referral is accepted by a mental health team, they are often faced with a lack of understanding about their condition, which leads to poor care[1]. A 2023 study asked 153 people affected by Huntington’s disease to identify their top three care needs. Mental health needs were mentioned most frequently, in relation to the person living with Huntington’s disease and to caregivers’ own unmet mental health needs[2].
If you have Huntington’s disease and are experiencing severe mental illness, then you want help from professionals who understand your needs and how to offer support. We have found that time and again this is not happening. The UK Government has committed to giving mental health the same attention and focus as physical health. We support this goal but fear that the mental health needs of people with rare diseases, such as Huntington’s disease, are being overlooked.
We urge the Committee to recommend that NICE, the UK government, NHS and local authority providers, and Integrated Care Boards work together to:
● Give every person with Huntington’s disease access to specialist mental health support: Many people with Huntington’s disease do not have access to a neuropsychiatrist. The NHS should also provide specialist talking therapies programmes that meet the needs of people with rare neurological conditions, such as Huntington’s disease.
● Prevent people being excluded from mental health services because they have an organic brain condition: We support the recommendation from the Neurological Alliance, which represents over 90 organisations and professional bodies supporting people with neurological conditions, that no-one should be denied access to mental health services on the basis of having an organic brain condition, unless they can be referred on to a more suitable service. We are also calling for the UK government to publish a Rare Diseases Action Plan for 2025, which calls for mental health services to offer support based on need and to not exclude anyone because of a neurological diagnosis.
● Develop guidelines for health professionals on Huntington’s disease, including on mental health: Due to Huntington’s disease being a rare and complex neurological condition, health professionals often lack an understanding of how to provide effective support for people living with the disease. This increases the risk of a person reaching crisis point and requiring a hospital admission because they are not getting the care they need.
● Ensure that every person living with Huntington’s disease is supported by a health or social care professional, who coordinates their care and acts as a local expert on their care needs: The complex nature of Huntington’s disease means there are frequently multiple professionals involved in a person’s care, often with little knowledge of the disease. This is why it is vital that everyone who has the disease is supported by a health or social care professional who can help coordinate their care.
Response to questions
Question 1. What does high-quality care look like for adults with severe mental illness and their families/carers?
Mental health support for people living with Huntington’s disease
There are a number of specialist clinics for people with Huntington’s disease in England and Wales and many have a neuropsychiatrist linked to them. Neuropsychiatrists assess and treat mental illnesses related to neurological conditions, such as Huntington’s disease. However, many people with Huntington’s disease do not live in an area where they can receive support from a specialist team. The Neurological Alliance has identified gaps in specialist mental health support for neurological conditions, such as Huntington’s disease. The Royal College of Psychiatrists found there were just 64 consultant neuropsychiatrists in the UK, with people waiting up to two years for inpatient support[3]. It is also estimated that there were less than four (3.61) psychologists per every 100,000 people in the UK undertaking working sessions in neuropsychology[4].
Even if a person can see a neuropsychiatrist, they may still need support from community mental health services. This is likely to be when they are experiencing a mental health crisis, which cannot be managed in specialist services. We recognise that community mental health services are overstretched and have limited knowledge of Huntington’s disease. However, neuropsychiatrists within specialist Huntington’s disease services are often willing to provide in-reach and advice on cases to colleagues from community services. There is nothing about Huntington’s disease that prevents the treatment of any mental illness. Generally, people with depression, anxiety and psychosis can be treated in the same way as people with these conditions who do not have Huntington’s disease. Everybody with Huntington’s disease will need a named health or social care professional to coordinate their care in the community (see our response to question 5).
Improving the service user journey
It is essential that every person living with Huntington’s disease can access specialist multi-disciplinary team care, which provides support with physical health, mental health and social care. People living with Huntington’s disease need support from a range of services including neurology, psychology, nursing, dietetics, occupational therapy, speech and language therapy, physiotherapy and access to mental health services.
We support the Neurological Alliance’s consensus statement on mental, emotional and cognitive health provision[5]. This states that all people with neurological conditions should have integrated, joined up care from their physical and mental health teams, that takes account of all the care and treatment they are undergoing.
If every person living with Huntington’s disease had this support then their service user journey would be improved within community mental health services and it would be easier to access support provided by other services/agencies.
Question 2: What is the current state of access for adults with severe mental illness to community mental health services?
Almost a third (32) of 109 people we surveyed said they or their relative was denied access to mental health services because of having Huntington’s disease. Of those whose referrals were rejected, over half (57%) said it was because of their Huntington’s disease diagnosis. Often, there was a lack of understanding from mental health services that mental health symptoms are a part of Huntington’s disease. This leaves patients with nowhere to turn for help with one of the most challenging aspects of their condition. For people who were denied access to mental health services, 8 in 10 (81%) experienced worsening mental health, with some sectioned in a mental health hospital[6].
“People with Huntington’s disease who are denied access to mental health services often can access it when in crisis. At this point, the Huntington’s disease has declined further, the neuropsychiatric symptoms take longer to treat - people often stay in hospital for 6-9 months (usual stay is a few weeks). This enforces institutional behaviour and needlessly separates the person from their home environment for longer than necessary.” Health professional (response to our 2023 survey) |
The case studies below highlight the challenges that people with Huntington’s disease face in accessing support from community mental health services.
CASE STUDY: Andrew (name has been changed) Andrew is a man in his 50s living with Huntington’s disease. He has a diagnosis of mixed anxiety and depressive disorder, which led to him previously being under the care of NHS community mental health services. The wellbeing of Andrew and his family has been significantly impacted by his Huntington’s disease diagnosis. His dad died of Huntington’s disease and one of his siblings has the disease, as does one of his four children. Andrew has grandchildren and fears they will inherit the condition. After experiencing a deterioration in his mental health, including severe paranoia, Andrew was referred by a neuropsychiatrist to a Community Mental Health Team (CMHT) for ongoing support. His referral was rejected without an assessment taking place, on the basis that the CMHT was unable to provide care because Andrew’s mental illness was related to his physical health needs. |
CASE STUDY: Sam (name has been changed)
Sam’s daughter was concerned after he became increasingly agitated and paranoid, refusing to take his antidepressants. Sam started to believe his neighbour was listening to his conversations. He would send texts and call family members every day, threatening his neighbour and making paranoid claims about them. He also told family members that he was struggling to cope with life.
A referral was made to social services, who forwarded it to a Community Mental Health Team (CMHT). The CMHT’s response was that this was an inappropriate referral and they sent it to another mental health team, who told the CMHT they would not be able to offer support. This situation continued for four weeks, during which time Sam’s mental health deteriorated. He was eventually assessed by the CMHT, who were satisfied by Sam’s assurances that he would take his medication and declined to offer further support. This is despite the fact that Sam’s refusal to take medication had contributed to his referral to mental health services.
Two weeks after his assessment by the CMHT Sam attempted suicide and was left with head injuries and broken bones. He spent over a month in hospital and required multiple surgeries.
Sam’s family have been left devastated by what happened to him. They are also frustrated that, despite their repeated warnings to different health and social care services, not enough action was taken to keep him safe. |
Question 3: Has the Community Mental Health Framework been an effective tool for driving the delivery of more integrated, person-centred community mental health services?
The Community Mental Health Framework aims to achieve “…radical change in the design of community mental health care by moving away from siloed, hard-to-reach services…”.
It also states that people with mental health conditions should be able to “…access support, care and treatment in a timely manner and from wherever they seek it…”, including their GP and community mental health services[7]. Unfortunately, this is still not the reality for many people living with Huntington’s disease, who find that services are hard to access and do not communicate with each other effectively (see quote below and our response to question 2).
“ A lady with advanced Huntington’s disease was trying to decorate and was going to cut through live electric wires with a pair of scissors because they were in the way. The GP made an urgent referral to the mental health team. Referral was refused by the mental health team as they informed the GP her mental illness was because of Huntington’s disease.”
Health professional (response to our 2023 survey) |
Question 4. How can community mental health services work with social care, the third sector and local government to better address service users’ health and wider social needs that are wider determinants of mental health outcomes?
Please see our response to question 5, which highlights the need for all people living with Huntington’s disease to have a care coordinator.
Question 5: What blockers or enablers should policy interventions prioritise addressing to improve the integration of person-centred community mental health care?
Enablers
A care coordinator for people living with Huntington’s disease
It is understandable that many people with Huntington’s disease are unable to coordinate their care. People living with the disease and their families face significant challenges throughout their lives.
We would like all people living with Huntington’s disease to be supported in their community by a named health and social professional who coordinates their care and acts as a local expert on their care needs. The format and job title of a care coordinator role can vary depending on patient need and the way services are designed. This role can help people get the care they need in the community and avoid them experiencing a crisis, which requires a hospital admission. Given the budgetary challenges facing NHS commissioners and providers, we recognise that a care coordinator may cover a range of rare diseases and not just Huntington’s disease.
A recent study of people affected by Huntington’s, including family members, highlighted how important it is to have a care coordinator. Although 90% (112) people said it was very important or extremely important to have a care coordinator, less than one in five (19%) had one. Among those with a care coordinator, four out of five (81%) reported being somewhat or extremely satisfied with their services[8].
There was recognition from the previous government that a lack of coordinated care is a significant challenge for those living and working with rare diseases. In 2021, the UK Rare Diseases Framework was published, which set out a five-year goal to ensure rare disease patients experience better coordination of care throughout the patient journey. More needs to happen to make this a reality.
The reasons why people living with Huntington’s disease need this role is because:
● It is a disease which requires complex, multi-disciplinary team care: People living with Huntington’s disease need help from a range of different physical, mental health and social care. The frequency of their interactions with the NHS and other services mean that their care is complex and therefore requires coordination.
● Huntington’s is rare, meaning health professionals often lack an understanding of the condition: A care coordinator can educate professionals about Huntington’s. They can also act as a link between a person’s specialist Huntington’s disease service and community teams.
● Many people are unable to coordinate their care on top of managing their own condition: Care coordinators provide expert advice on care, along with practical and emotional support, helping people with Huntington’s disease to manage their condition throughout their lives. Care coordinators can liaise with the range of providers a person may need support from, in areas including mental health, benefits and social care.
● Safeguarding issues related to people with Huntington’ disease: Due to cognitive changes, a person may display more risky behaviours or be at higher risk of drug or alcohol use than the general population. Cognitive changes can also make people with Huntington’s disease vulnerable to exploitation.
EXAMPLE: First Community Health and Care (NHS Surrey Heartlands Integrated Care Board (ICB)) First Community Health and Care has a specialist practitioner caring for people living with Motor Neurone Disease (MND) and rare neurological conditions, including Huntington’s disease, in east Surrey. They ensure patients have access to the services, support, equipment, and specialist care they need, and provide advice on appropriate referral pathways to patients, GPs and other community services. The service provides holistic support and advice to Huntington’s disease patients, their carers and family members living in east Surrey to coordinate clinical care and improve overall quality of life. |
Developing guidelines on Huntington’s disease
We want all mental health professionals to understand what good care or support looks like for people with Huntington’s disease, so that they can feel confident in offering support.
We are calling for NICE to develop guidelines for Huntington's disease to help ensure that people with the condition get the best possible care.
Blockers
Requirement for self-referral
A person with Huntington’s may be reluctant to engage in activities and become apathetic. If left alone, they may stay in bed or spend the whole day watching television. This behaviour is due to changes in the parts of the brain, which are crucial for drive and initiative. The person may also not recognise that they have the disease, including their mental health symptoms.
These changes mean that people with Huntington’s disease can struggle to initiate getting help. This is a particular challenge, given the shift towards self-referral for many mental health services. Self-referral can benefit people who are struggling with their mental health who are motivated to seek help. However, it is a barrier for people living with Huntington’s disease who are apathetic and/or lack insight, meaning some of the most severely affected people are not getting the help they need. The only other means of referral is often a written referral from the GP.
“If I want to access mental health services for someone who will not self-refer, I have to go through their GP. It is increasingly unlikely that you can phone a surgery and get to speak to the GP of someone you are concerned about. It can be difficult to get past the receptionist and if you want to leave a message for a GP, they are reluctant to phone you back to discuss the case, without the patient's signed consent.
When I have spoken to a GP and they have sent a written referral to the mental health team, often the person does not attend the initial appointment and is then simply discharged for not engaging with the service”.
Chris, Specialist Huntington's Disease Adviser (2025)
|
NHS structures and commissioning barriers
Although most patients with Huntington’s are too young for older adult and dementia services, their cognitive and neurological symptoms often sit outside the comfort zone of general adult services. As such, if they are not rejected, referrals are often passed between teams, who are reluctant to take responsibility for seeing the person. This can lead to significant delays in accessing support.
Improving coordination of care for people with rare diseases has not been a priority for ICBs
The UK Rare Disease Framework set out a shared vision for how the UK will improve the lives of those living with rare diseases. A priority is to promote better coordination of care. However, in many areas, this is still yet to happen[9].
Question 6. What are the examples of good or innovative practice in community mental health services?
The Leicestershire Huntington’s Disease service is one of the Leicestershire Partnership NHS Trust’s specialist services and is part of its mental health directorate. The service works closely with local authorities, health commissioners, social services and the Huntington’s Disease Association to provide clinical, social and practical support for patients with Huntington's disease and their families.
The service provides the following support:
● Specialist inpatient unit: There is a highly specialised 14 bedded inpatient unit with dedicated multi-disciplinary team (MDT) input from a range of health professionals, including a consultant neuropsychiatrist and clinical neuropsychologist. The team supports people living with Huntington’s disease who need to be admitted for a period of assessment and treatment before being discharged to the community with a package of care recommended by the specialist MDT.
● Community MDT team: This team supports Huntington’s disease patients and their families (including those with Juvenile Huntington’s disease) within Leicestershire. The team benefits from psychology, speech and language therapy, physio, dietetic, and nursing and occupational therapy input, as well as a consultant neuropsychiatrist.
● Advisory Service: There is an advisory service to support patients in the neighbouring county (Northamptonshire), which provides neuropsychiatric and nursing advice for Huntington’s disease patients. The service is offered both face to face and remotely (phone, email, virtual calls). The number of active cases open to the team is about 60 to 70 patients who are visited at their place of residence for a review on a 6-12 monthly basis.
February 2025
[1] Huntington’s Disease Association. 2024. Unseen and Unheard: The need to improve mental healthcare for people living with Huntington’s disease. Available here: https://www.hda.org.uk/seecmsfile/?id=405
[2] Sandra Bartolomeu Pires et al (2024). Are people living with Huntington’s disease experiencing person-centered integrated care? Journal of Huntington’s disease. Available here: https://journals.sagepub.com/doi/full/10.1177/18796397241288449
[3] Royal College of Psychiatrists. 2021. Census 2021. Workforce figures for consultant psychiatrists, specialty doctor psychiatrists and Physician Associates in Mental Health. Available here: www.rcpsych.ac.uk/docs/default-source/improving-care/workforce/census-2021-completed-draft.pdf
[4] The British Psychological Society (BPS). 2021. Huntington’s disease. Available here: https://explore.bps.org.uk/content/report-guideline/bpsrep.2021.rep143/chapter/bpsrep.2021.rep143.4
[5] Neurological Alliance. 2021. Consensus statement on mental, emotional and cognitive health provision. Available here: www.neural.org.uk/wp-content/uploads/2021/04/Mental-Health-Consensus-Statement.pdf
[6] Huntington’s Disease Association (2024). Unseen and Unheard: The need to improve mental healthcare for people living with Huntington’s disease. Available here: https://www.hda.org.uk/seecmsfile/?id=405
[7] The Community Mental Health Framework for Adults and Older Adults. September 2019. NHS England and NHS Improvement and the National Collaborating Central for Mental Health. Available here: https://www.england.nhs.uk/wp-content/uploads/2019/09/community-mental-health-framework-for-adults-and-older-adults.pdf
[8] Sandra Bartolomeu Pires et al (2024). Are people living with Huntington’s disease experiencing person-centered integrated care? Journal of Huntington’s disease. Available here: https://journals.sagepub.com/doi/full/10.1177/18796397241288449
[9] Department of Health and Social Care. January 2021. UK Rare Diseases Framework. Available here: https://www.gov.uk/government/publications/uk-rare-diseases-framework