Huntington’s Disease

Debate between Hilary Benn and Liz Twist

Wednesday 9th November 2022 Westminster Hall

[Hilary Benn]

I am extremely grateful to the right hon. Gentleman for making that point; he anticipates my argument exactly. I and many other people think that is exactly what ought to happen for the very reasons he set out.

What needs to be done and how can the Minister help? That is why we are here today. First, we have to raise awareness of the impact of the disease and the suffering of those with it and their families. By acknowledging what it is and talking about it, we can help families who all too often choose the path of silence and shame because they do not want to talk about it to anybody else. We should say with one voice that no one should have to carry this burden alone.

Secondly, families need more support, including financial help and better care. There is some wonderful expertise in hospitals and a number of centres of excellence throughout the United Kingdom, including the Huntington’s Disease Centre at University College London, but outside those specialist centres it is a different story. At the moment, it is hit or miss; it was put to me recently that it is more miss than hit in areas without specialist support. Social care is of course vital to help those with Huntington’s to manage day-to-day life. The cost of private care for someone with Huntington’s can amount to thousands of pounds a week—who can afford that? Some councils provide specialist care homes, but not all.

Let us begin by having a care co-ordinator—a Huntington’s disease specialist—in every community to help to identify and keep in regular contact with Huntington’s families in their area and guide them through the range of support that they need to meet their requirements. They would also help to improve understanding of the disease on the part of other health and social care professionals. It is hugely complex, and how it presents itself and the sheer scale of support that sufferers require are much misunderstood.

[Liz Twist (Blaydon) (Lab)]

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. He has powerfully explained the difficulties. According to a Genetic Alliance UK survey, 71% of those with rare diseases co-ordinate their own care, and that is often the case for people with Huntington’s. Does he agree that it is really important that framework priority 3 of the rare diseases framework is used effectively to improve the co-ordination of care and make the situation much better?

[Hilary Benn]

I agree completely with my hon. Friend and congratulate her on her work chairing that all-party group.

There is a need for a Huntington’s disease clinical lead in every area, which is not the case currently. We need consultants in psychiatry, genetics or neurology who can run clinics in collaboration with a local care co-ordinator or Huntington’s disease specialist. As my hon. Friend identified, in the absence of that, carers carry a heavy load. Let me read what another person wrote to me:

“We learn to be our loved one’s nurse, dietitian, speech and language therapist, risk assessor, health impact assessor, cognitive ability trainer, physiotherapist, medicine dispenser, advocate and care manager, amongst many other things.”

That is one carer talking about their experiences. Those words reflect the fact that access to the right support is limited and varies across the UK, even though we have had commitments in the past decade, including the UK rare diseases framework in January last year.

Thirdly, we need better access to mental health services and support. I asked the Secretary of State for Health and Social Care about this in a recent written parliamentary question, and the answer said:

“Access to mental health services is based on clinical need, including for people with organic brain disorders such as Huntington’s disease.”

I must tell the Minister that I have been advised by the Huntington’s Disease Association that some mental health trusts exclude people with organic brain disorders, regardless of their presenting symptoms. If that is the case—I am sure the Minister will check after the debate—such practice would be at odds with what I was told in that answer. If that is the case, it cannot be right, because patients who experience mental health problems—those who are, for example, profoundly depressed or suicidal—need help regardless of the reason for their experiencing those symptoms. We need good support everywhere.

Fourthly, to come on to the point raised by the right hon. Member for Ludlow (Philip Dunne), we need NICE to produce specific guidelines on the treatment of Huntington’s disease, because there are currently none; that is in marked contrast to the situation for motor neurone disease, Parkinson’s disease, multiple sclerosis and epilepsy, for which there are NICE guidelines that have helped to improve treatment. Scotland already has a national care framework for Huntington’s, which was developed by the Scottish Huntington’s Association and funded by the Scottish Government. It makes clear that all NHS boards must have a Huntington’s clinical lead and an adequate number of Huntington’s specialists to support the local community. I am told that the majority of boards, although not yet all, now have such posts.

Formally setting out the needs of Huntington’s families for all to see in NICE guidelines would surely be beneficial to the whole UK. I anticipate that the Minister will probably argue, in response, that

“There are no current plans for the National Institute for Health and Care Excellence to develop a guideline on Huntington’s disease”,

and that

“NHS England is developing a neuropsychiatry service specification”.

I say that because that is what she said to me this week in answer to another of my written parliamentary questions. If that is still the Government’s position, I urge the Minister to think again.

Huntington’s disease is not just about neuropsychiatry. It is frankly so unique, it has such a complex range of symptoms and the challenges that it presents are so difficult, that all the UK’s Huntington’s disease organisations together believe—and I agree with them—that there is an overwhelmingly strong case for the development of NICE guidance on Huntington’s that can support the care and management of patients and help to avoid the unwarranted variation in diagnosis and care that currently occurs. Apart from anything else, there are many clinicians and nurses who, on first encountering someone with Huntington’s disease, have to admit that they know absolutely nothing about it—they have never seen it before. That is another powerful argument for NICE guidelines: they would set an expected standard and be backed up by NHS England, and sufferers and their families could draw attention to them if the services offered in their community fell short.

Fifthly, there is a specific issue related to our armed forces. Those who are known to be carriers of the gene are normally graded medically unfit for service, as are candidates with a proven immediate family history of the condition, unless they are known, as the result of a genetic test, not to carry the gene. By contrast, I am advised that some individual police forces do recruit candidates with the gene, but ask them to undergo a yearly meeting with a neurologist and have an MRI scan as a form of MOT.

I was encouraged by the answer to my written question to the Secretary of State for Defence, because it said:

“If there is clear evidence that a candidate is unlikely to develop Huntington's disease during a Service career”—

that can be as short as eight or 10 years, although it can be longer—

“then they may, on a case by case basis, be considered medical fit for service.”

I ask the Minister simply to pass on my words to the Defence Secretary, in the hope that young people in particular aged 16, 17 and 18 who have always dreamed of a military career will have the chance to fulfil their dreams.

The final thing I want to raise is research. Recently, we have seen the development of covid vaccines. We remember how antiretrovirals were created and turned HIV from a terminal illness into a disease that can be lived with. Science, as we know, has an astonishing capacity to change lives. As I said earlier, there is currently no treatment for Huntington’s, but scientists have identified the gene, and that leads some people to argue that Huntington’s is—this is a wonderful phrase—the most curable of the incurable diseases. That is why lots of research is going on—because the gene is known—and about eight or nine pharmaceutical companies are involved.

The disease is caused by a faulty protein, and Huntington’s-lowering drugs, as I think they are called, aim to tell cells, “Make less of that.” That is sometimes referred to as gene silencing. There have been drug trials, including the Roche GENERATION-HD1 study, and the UK trial sites included Leeds—where my constituency is—Glasgow, Aberdeen and Cardiff. Unfortunately, last year that trial was halted, which was a terrible shock to the global Huntington’s community. However, the treatment that was being tested is to be investigated in a new trial with a different cohort of patients, and other trials are looking at easing the impact on cognitive impairment. Yes, there have been setbacks, but there will be further trials. Other scientists, with very powerful microscopes, are peering at the make- up of the sticky proteins—if I may use that phrase—that seem to be associated with this disease, but also with Alzheimer’s disease and Parkinson’s disease.

I thank all the scientists who are searching for ways of lessening the impact of this awful disease and, ultimately, for a cure, as well as all those who participate in the trials, because, when a treatment does come, we will remember them as the pioneers who made it happen. I am sure that the Minister and all of us here today offer our best wishes to the scientists and researchers, hope they have every success on their journey and want to encourage them—including, where necessary, by providing more funding—in order to speed us towards the extraordinary day, which the scientists are confident will eventually come, when the awful shadow of this disease can be lifted from those who feel so helpless today. Until that day dawns, we must unite in our resolve to ensure that the families and their loved ones who have this appalling disease visited upon them have the support they need and deserve, regardless of where they live in our United Kingdom.