Commons Sense

House of Commons · Westminster Hall

Huntington’s Disease

09 November 2022 · 11 other contributors · 11,970 words

Opened by Hilary Benn Lab Leeds South

Responding minister: Helen Whately

ScotlandMental HealthNHS

Summarised by AI from the official record, so it can contain mistakes.

Read the full transcript on Parliament.uk

At a glance

Hilary Benn raised concerns about huntington’s disease in Westminster Hall. A government minister responded.

Key points

  • Huntington's disease affects approximately 8,000 people in the UK and puts around 32,000 at risk due to its hereditary nature.
  • Mr Benn urged the government to develop NICE guidelines for Huntington's disease and improve mental health support for those affected.
  • The minister acknowledged the importance of research funding, noting 32.6 million invested over the past five years.

Key requests to Government

Mr Benn urges the Minister to raise awareness about Huntington's disease, improve access to mental health services, establish a care coordinator for every community, develop NICE guidelines specific to Huntington's treatment, reconsider medical fitness criteria for military service, and encourage further research towards potential treatments or cures. The lead MP asked the government to produce NICE guidelines for Huntington's disease, improve mental health support for those affected by the condition, and consider more flexible recruitment policies in the armed services for individuals with the gene but who are unlikely to develop symptoms. Additionally, he acknowledged the importance of continued research funding.

How the debate unfolded

MPs spoke in turn to share their views and ask questions. Here's what each person said.

Opened the debate

Hilary Benn Lab Leeds South

Mr Benn is concerned about the devastating impact of Huntington's disease on individuals and families. The condition affects approximately 8,000 people in the UK but around 32,000 are at risk due to its hereditary nature. It leads to a wide range of symptoms including cognitive decline, depression, anxiety, physical disabilities, and difficulties in daily living activities such as eating and speaking. Families often face stigma, financial strain, and limited access to appropriate care and support services. The speaker highlighted the impact of Huntington's disease on individuals and families, noting issues with Personal Independence Payment (PIP) assessments and the high overturn rate in tribunals. The speaker also mentioned the high incidence of Huntington's in Scotland and the ongoing struggle for better care co-ordination.

Other contributors (11)
  • David Anderson Lab Blaydon

    I draw attention to the funding gap for Huntington's Disease research and care services, highlighting a need of £5 million annually to bridge current unmet needs.

  • Gavin Newlands SNP Paisley and Renfrewshire North

    Mr Newlands highlighted the ongoing stigma and discrimination faced by individuals at risk of Huntington's disease, noting that only 37% of UK adults are aware of its neurological impact. He also pointed out issues with insurance coverage for those affected or at risk from HD. The Scottish Huntington's Association (SHA) has developed a person-centred national care framework in Scotland, supported by the Scottish Government, which focuses on delivering change through specialist staff and youth advisors. The framework aims to ensure sufficient HD specialists across NHS board areas but gaps still exist despite significant strides made in Scotland.

  • Jim Shannon DUP Strangford

    Mr Shannon highlighted the challenges faced by Huntington's patients and their families in Northern Ireland, noting only two qualified nurses for a population of 2 million. He stressed the importance of mental health services, research funding, and equitable care across the UK. Mr Shannon also emphasized the need to categorize Huntington's as a rare disease under government policy and advocated for more trained specialists and respite care.

  • Liz Kendall Lab Leicester West

    Ms Kendall highlighted the impact of Huntington's disease on individuals and their families, emphasizing the need for comprehensive mental health services, specialist nurses, and improvements in social care workforce. She mentioned 8,000 people living with the condition in the UK, including about 100 in Leicester and Leicestershire, and their 32,000 children facing a terrible burden of uncertainty. The speaker called for NICE guidelines to ensure consistency in treatment and support, improved coordination of care pathways, and addressed financial strains due to higher costs and lower incomes.

  • Liz Saville-Roberts PC Dwyfor Meirionnydd

    I am immensely grateful to the right hon. Gentleman for giving way, and I congratulate him on securing the debate. One thing that has been emphasised to me is how important it is to remember the carers—particularly the family carers—affected by this condition. Members will be concerned when we hear from constituents who are being refused personal independence payments. The procedure that applicants with Huntington's disease and their families have to go through is almost a test of their perseverance. As MPs, many have to deal with these issues, but there must be a better way of dealing with families affected by conditions such as Huntington's.

  • Liz Twist Lab Blaydon and Consett

    I thank my right hon. Friend for securing this debate. As the chair of the all-party parliamentary group on rare, genetic and undiagnosed conditions, I am glad this issue is being discussed. According to a Genetic Alliance UK survey, 71% of those with rare diseases co-ordinate their own care.

  • Matthew Pennycook Lab Greenwich and Woolwich

    The Minister is generous in giving way. The available figures suggest that 8,000 people are affected by Huntington's disease, but due to diagnosis problems, stigma, and misrecorded deaths, the true prevalence is uncertain. He asked the Department for a more accurate estimate of the number of people affected.

  • Patrick Grady

    The right hon. Gentleman is making a powerful speech. As he is demonstrating, this debate is about raising awareness of the challenges, and I know from the constituents I have heard from that that is one of the key things that family groups would like to see happen.

  • Philip Dunne Con West Dorset

    I add my congratulations from the Government side to the right hon. Gentleman on securing this debate and raising awareness of this appalling condition, and on his very powerful speech. He is talking about the support services available to the families and victims of this disease; because there is no national guidance, that is now a matter for the individual integrated care boards. Philip Dunne agrees with the need for NICE guidelines specific to Huntington's disease treatment, similar to those available for other neurological conditions. He supports efforts to improve understanding and care in areas without specialist support.

  • Stephen Bonnar Lab Glasgow North East

    I am concerned about the challenges faced by those affected by Huntington's Disease, noting that there are approximately 6,700 people living with it in Scotland and 12,000 across the UK. I call for increased support for families impacted by this genetic disorder.

  • Steven Bonnar SNP Ayr, Carrick and Cumnock

    Recognises the prevalence of Huntington's disease in Scotland, noting that around 1,100 people are living with it. Emphasises the importance of research into slowing disease progression and increasing understanding of potential cures. Highlights the work done by Scottish researchers to develop age-appropriate information for children and young adults affected by the condition.

Government Response

Helen Whately

I congratulate the right hon. Member for Leeds Central on securing this debate on Huntington's disease, and on shining a light on this condition, which we all recognise has a truly devastating impact on those affected by it and their loved ones. I also thank the hon. Member for Strangford for his speech. The minister highlighted that Huntington's disease is estimated to affect one person in 10,000 in the UK and emphasised the importance of research funding. Over the past five years, £32.6 million has been invested into Huntington's disease research through the National Institute for Health and Care Research (NIHR) and UK Research and Innovation (UKRI). The minister also mentioned the NIHR's clinical research network that has supported 43 studies over this period to translate scientific breakthroughs into treatments. She discussed England's first rare diseases action plan, which includes £40 million of new funding for the NIHR BioResource to understand rare disease genetics better. The minister responded to concerns about mental healthcare by stating an additional investment of £2.3 billion per year will go into mental health care by 2023-24. She also addressed questions related to NICE guidelines and clarified that while there is no specific guideline for Huntington's, it falls under a recent neurodegenerative condition guideline. The minister assured the right hon. Member for Leeds Central that the armed forces do not conduct genetic testing but candidates can provide medical evidence showing they are unlikely to develop the disease during service. She concluded by thanking those who contributed and expressing her commitment to improving conditions for people with Huntington's.

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