Huntington’s Disease

Debate between Matthew Pennycook and Helen Whately

Wednesday 9th November 2022 Westminster Hall

[The Minister of State, Department of Health and Social Care (Helen Whately)]

I congratulate the right hon. Member for Leeds Central (Hilary Benn) 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 (Jim Shannon) for his speech. It is a pleasure to be together in Westminster Hall for the second day running. The hon. Member for Paisley and Renfrewshire North (Gavin Newlands) gave a perspective from Scotland, and we also heard from my right hon. Friend the Member for Ludlow (Philip Dunne) and the right hon. Member for Dwyfor Meirionnydd (Liz Saville Roberts), which shows the interest in and concern about care for people suffering from Huntington’s disease.

The right hon. Member for Leeds Central spoke powerfully and clearly drew on his own experience, as he mentioned that he knows somebody with Huntington’s disease. It is important that we all bring to this place our own experiences, whether they arise from speaking to our constituents or from contact with family and friends, because they add to what we can do here in Parliament.

The right hon. Gentleman gave a long list of the symptoms of Huntington’s and their consequences, and described how all that can play out for individuals with the disease—agonisingly slowly over 15 to 20 years. He also spoke about what that means for those around the sufferer, not only as carers, but as family members who might carry the gene, but who might choose not to have a test and to live without knowing whether they have it. Clearly, that brings its own challenges, including mental health challenges. He made a point that I found very powerful: he said that Huntington’s is a thief that slowly steals family, friends and the person someone used to be. I am sure that rings true to people who are suffering from the disease and those who love them. I thank him for bringing the issue here, and for speaking so powerfully.

The right hon. Gentleman asked several questions, which I will come to, but I want to start from the top: Huntington’s disease is estimated to affect one person in 10,000 in the UK, so it is a rare disease. Rare diseases are those that affect fewer than one person in 2,000. While rare diseases are individually rare, sadly, they are all too common collectively. One person in 17 will be affected by a rare disease at some point in their life, and in the UK that amounts to more than 3.5 million people. We must ensure that they get the best possible diagnosis, treatment and support.

[Matthew Pennycook (Greenwich and Woolwich) (Lab)]

The Minister is generous in giving way. The available figures suggest that 8,000 people are affected by this truly awful disease, but in truth, owing to the problems with diagnosis that have been described, and due to stigma and misrecorded deaths, the prevalence of Huntington’s is uncertain. Will she give us a sense of what the Department is doing to secure a more accurate estimate of the figure, which would give us a better grasp of the scale of the challenge?

[Helen Whately]

The hon. Gentleman makes a good point. As the right hon. Member for Leeds Central said, some people choose not to find out whether they carry the gene. Let me look into the hon. Gentleman’s question. I am happy to write to him with an answer.

Research is the key to swifter diagnosis, for those who want to know whether they carry the gene, and to better treatment of Huntington’s, which will ultimately give those who carry the gene the hope of better prospects. Through research, we are making major advances in diagnosing and treating Huntington’s disease. The Government primarily fund research on rare diseases such as Huntington’s via the National Institute for Health and Care Research, as well as through UK Research and Innovation. We have funded £32.6 million-worth of research on Huntington’s disease through those organisations over the past five years. Through its clinical research network, the NIHR has supported 43 studies into the disease over that period, particularly ensuring that scientific breakthroughs can be translated into treatments that will actually benefit patients. An example of that comes from researchers at the NIHR’s biomedical research centre at Guy’s and St Thomas’s NHS Foundation Trust, who have pioneered research on diagnosis of Huntington’s disease. Their work has led to the world’s first genetic test using nanopore-based DNA sequencing technology, which may be able to diagnose even the most complicated cases of Huntington’s disease in a matter of days, instead of weeks.

As part of England’s first rare diseases action plan, published in February this year, we announced £40 million of new funding for the NIHR BioResource, a bank of genetic data that is helping us understand the genetics of rare diseases. That action plan commits us to mapping the rare disease research landscape, so that we can identify gaps and priorities for future research funding. The results of that analysis will be published in the new year. NHS England recently published “Accelerating genomic medicine in the NHS”, a five-year strategy that sets out an ambition to accelerate the embedding of the use of genomic medicine across the health service. That includes continuing to deliver equitable genomic testing for improved prediction and diagnosis of conditions such as Huntington’s disease.

Many Members spoke about the experience of caring for people with Huntington’s, and the challenges involved in navigating the health and social care system. As this rare disease has such a complex range of symptoms, people have to navigate physical and mental healthcare, and of course social care. The right hon. Member for Leeds Central called for a Huntington’s care co-ordinator in every community. The current approach to improving care for people with Huntington’s and other neurological conditions is in the NHS England neurosciences transformation programme, which is identifying and setting out what good care looks like for people with neurological conditions, and what services they need. Those findings will be used to inform and advise integrated care systems on the services that they commission. The ICCs should then commission that range of services for people with diseases such as Huntington’s, who can then better access the support that they need. However, I will take away the right hon. Gentleman’s specific request for care co-ordinators, look into the matter, and get back to him.

The right hon. Gentleman also spoke about NICE guidelines, as did my right hon. Friend the Member for Ludlow and the shadow Minister, the hon. Member for Leicester West (Liz Kendall), and it is true, as was stated in the answer to his parliamentary question, that there is no NICE guideline specific to Huntington’s. In advance of this debate, I looked into that, and the expert view that I have been given is that Huntington’s sits under a recent NICE guideline on a range of neurodegenerative conditions that are grouped together, albeit that we recognise the differences in progression, prevalence and severity of those conditions. That said, I have heard the argument made by the right hon. Member for Leeds Central, and I will ask again about the case for doing something more specific to Huntington’s.

The right hon. Gentleman spoke about symptoms, and about mental healthcare for people with Huntington’s, as did the shadow Minister. The right hon. Gentleman talked about the mental health ramifications of the disease, which are an aspect of it that makes it so distressing and difficult for those who have it and their loved ones. People with Huntington’s should of course receive mental healthcare and support, and the Government are investing in mental health: an extra £2.3 billion per year will go into mental healthcare by 2023-24 to improve access and capacity in our mental health system. That said, I was concerned to hear from him that some people might not be receiving mental healthcare, and might be being excluded as a matter of policy, because of the nature of Huntington’s. I will take that point up with the mental health Minister, my hon. Friend the Member for Lewes (Maria Caulfield).

The right hon. Member for Leeds Central spoke about the Ministry of Defence. I reassure Members that the armed forces do not conduct genetic testing for Huntington’s disease in their medical assessments. That said, I am told that if a candidate knows of a family history of Huntington’s, it is for the candidate to provide medical evidence that they are unlikely to develop the disease in the service. I am aware that the genetics of Huntington’s disease are complex, and that the likelihood of an armed forces candidate developing the disease and the likely age of presentation depend on the number of repeating sections in the gene responsible for it. More repeats cause an earlier age of onset. I am sure that the right hon. Member knows that, as will other experts in the condition. I am told that, if there is clear evidence that a candidate is unlikely to develop Huntington’s disease during a service career, they may, on a case-by-case basis, be considered medically fit for service; however, the right hon. Member made an important point about young people being able to fulfil their dream of serving in our armed forces, and I will take that message to my colleagues in the Ministry of Defence, as he asked me to.

Once again, I thank the right hon. Member for leading today’s important debate, and other Members who spoke in it. I too extend my thanks to the rare diseases community, including carers, clinicians, patient organisations, Huntington’s disease charities across the UK, and the researchers who work tirelessly to improve the lives of people affected by Huntington’s disease and all other rare conditions. It has been very helpful to have this debate. The right hon. Member made specific points that I will take away and respond to. Overall, it is a very good thing that we have shone a light on what people suffering from Huntington’s disease, and their family and friends, are going through. I will do all that I can as the Minister with oversight of this area to make things better for them.