Huntington’s Disease — [Mr Laurence Robertson in the Chair]

– in Westminster Hall at 9:30 am on 9th November 2022.

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Photo of Hilary Benn Hilary Benn Labour, Leeds Central 9:30 am, 9th November 2022

I beg to move,

That this House
has considered Huntington’s disease.

It is a great pleasure to serve under your chairmanship, Mr Robertson, and to see the Minister in her place. I thank all the Huntington’s disease organisations in England, Scotland, Wales and Northern Ireland for the vital work they do and for the help and expertise they have given me in preparing for this debate. Back in May I tabled early-day motion 72 on Huntington’s, and I am really grateful for the support it received from Members on both sides of the House. My colleague Jackie Baillie tabled a similar motion in the Scottish Parliament, which I am told secured record support. I should also declare that my interest in this subject is the direct result of knowing someone who has the disease.

Huntington’s is a rare genetic neurodegenerative disorder that, over time, basically stops the brain working properly. It affects some 8,000 people in the UK, but around 32,000 people are living at risk of developing it for the simple but deadly reason that Huntington’s can be passed from generation to generation. This means that a diagnosis of Huntington’s does not just affect the person who has it; it also affects their children, who have a one in two chance of carrying the gene. There is a predictive genetic test to find out whether someone has the faulty gene that causes the disease, but I am told that on learning of, say, their parent’s diagnosis, the vast majority of people do not want to know and prefer to travel in hope. For all those reasons, it is a devastating diagnosis, because there is no cure, and there is only limited palliative care.

Imagine for a moment the questions that go through somebody’s mind when a loved one gets the diagnosis. How long has my spouse or my parent got? What is going to happen when they can no longer look after themselves? Which of our children has it? Should we tell the rest of the family? Will my loved one’s personality change, so that they end up shouting at me or even assaulting me? In many ways that is probably the most difficult thing to cope with, because we are losing the person we love not just physically but emotionally. This horrible disease makes them no longer the person they once were, and there is nothing—absolutely nothing—we can do about it.

It is very hard fully to convey what this means, so let me quote a letter I have received from someone who writes of

“being forced to witness the agonisingly slow degeneration of someone you have known and loved for nearly forty years, and how hard it is to keep remembering the person that they once were. That man—a loving, supportive spouse and utterly devoted father—was erudite, kind, attentive, with a wickedly dry sense of humour. He bears little resemblance to the unsteady figure with unclear speech, alternating between bouts of aggression, anxiety and apathy, with whom I now share my home.”

That is what sufferers and their families have to live with.

The symptoms of Huntington’s are many, and the list I am about to give is by no means exhaustive. They include early onset dementia; difficulty concentrating; lapses of memory; cognitive decline; depression; anxiety; obsessive disorders; psychosis; stumbling and clumsiness; involuntary jerking or fidgety movements of the limbs and body; difficulty moving; mood swings; personality changes; irritability; apathy; disinhibition; problems swallowing, speaking and breathing; fatigue; loss of weight; incontinence; and sexual dysfunction. In the later stages, full-time nursing care is needed.

Photo of Liz Saville-Roberts Liz Saville-Roberts Shadow PC Spokesperson (Home Affairs), Shadow PC Spokesperson (Women and Equalities) , Plaid Cymru Westminster Leader, Shadow PC Spokesperson (Justice), Shadow PC Spokesperson (Business, Energy and Industrial Strategy), Shadow PC Spokesperson (Transport), Shadow PC Spokesperson (Attorney General)

I am immensely grateful to the right hon. Gentleman for giving way, and I congratulate him on securing the debate. He is speaking very movingly.

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. I am sure the right hon. Gentleman will join me in impressing upon the Minister the importance to families who are going through this experience of granting the facility of respite care for family carers at a time of real carer shortages.

Photo of Hilary Benn Hilary Benn Labour, Leeds Central

I am profoundly grateful to my right hon. Friend for attending this debate, and I agree completely with what she has said. I will come to the question of the needs both of people who have the disease and of those who care for them.

In short, those affected will lose the ability to walk, talk, eat, drink, make rational decisions and care for themselves. Partners and children are turned into carers, and children know that they themselves have a 50% chance of going through what they see unfolding in front of their eyes—a prospect that often results in self-harm, low esteem, low confidence, low mood, anxiety or depression.

Professionals, and indeed families, can sometimes mistake Huntington’s for other conditions such as Parkinson’s or Alzheimer’s. That is especially true when the family has no idea that Huntington’s exists in their family, and those living with it face a great deal of stigma and discrimination. It is not uncommon for a loved one to be wrongly accused of being drunk or on drugs due to their symptoms. The symptoms can start at an early age, and about 5% to 10% of sufferers experience them before the age of 20, although they usually appear between the ages of 30 and 50, and some 10% of sufferers develop them after the age of 60. The average survival time from first onset of symptoms is about 15 to 20 years.

Needless to say, people living with Huntington’s and their families face extraordinary challenges in their lives because the condition affects everyone who comes into contact with it: those experiencing symptoms and their families, those who have tested positive but do not yet have symptoms, and people at risk of developing it. Even those who test negative can suffer from survivor guilt, and in some cases might be ostracised by their families.

Photo of Patrick Grady Patrick Grady Scottish National Party, Glasgow North

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. Even though health is a devolved matter, there is a consensus across the parties and throughout the UK that more needs to be done to ensure access to specialist services and to improve clinical research, and there are examples of collaboration, such as that between the University of Glasgow in my constituency and University College London.

Photo of Hilary Benn Hilary Benn Labour, Leeds Central

I say to my hon. Friend, which he is on this occasion, that I am grateful for his attendance today and I agree with every point he has made. I will discuss research towards the end of my speech.

Young people who grow up in the shadow of Huntington’s face daunting choices about genetic testing and whether to start a family. Should a young person tell a new partner about the condition? When should they tell their partner? How will the partner react? Many young people care for relatives while worrying that they will get the disease themselves. A Huntington’s family member put it like this:

“Huntington’s is a thief that slowly steals your body, energy, health, family, friends and the person you used to be.”

Last year, a community survey undertaken as part of the Huntington’s Disease Alliance UK and Ireland Family Matters campaign—that is quite a title—found that 98% of carers felt that Huntington’s had negatively affected their loved one’s emotional wellbeing; 88% said the disease had changed their relationship forever; and 70% went so far as to say that the impact had been either extremely difficult or life ruining, saying, “It has ruined our lives.”

The disease has a huge effect on family finances and on the ability to work of the person and those who care for them. Sufferers eventually cannot hold down a job, their carer may have to give up their job to look after them, and all the while the bills mount. Income support and financial assistance to meet the cost of equipment and home adaptations is available, but it is limited and difficult to access. That is particularly the case for someone with Huntington’s who does not yet display physical symptoms, and is therefore incorrectly believed not to be symptomatic and not entitled to financial support. That means that people who display only the less visible symptoms—say, mental health or cognitive ones—cannot get the help despite their debilitating effect. That cannot be right.

Photo of Philip Dunne Philip Dunne Chair, Environmental Audit Committee, Chair, Environmental Audit Committee

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, which have replaced clinical commissioning groups. Does he agree that one of the outcomes of his securing this debate might be that the Minister commits to at least consider encouraging the National Institute for Health and Care Excellence to establish national guidelines to ensure consistency of support throughout the country?

Photo of Hilary Benn Hilary Benn Labour, Leeds Central

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.

Photo of Liz Twist Liz Twist Opposition Whip (Commons), Shadow Minister (Scotland)

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?

Photo of Hilary Benn Hilary Benn Labour, Leeds Central

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 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.

Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health) 9:52 am, 9th November 2022

It is always a pleasure to speak in this Chamber. As the DUP health spokesperson, I wanted to add my contribution today. I congratulate Hilary Benn on setting out the case so well and on doing so from a passionate, intimate and obviously knowledgeable point of view. It was hard to listen to some of the things he said, not because he does not put them over right, but just because, when we hear the emotion in his voice, we understand that he has a very personal interest in this subject. So, again, I thank him personally, as I think we all do in the Chamber today. I just want to add my contribution and, as I always do, to give a Northern Ireland perspective.

This is a difficult subject to deal with. As the right hon. Gentleman said, this disease does not just affect the person who has it; it can potentially affect the children as well. I think that makes things harder, because if someone has any doubt whatever as to whether they carry the gene, that will impact what they do when it comes to marriage, having children and having relationships, but also what will potentially happen to them in the latter part of their life. Therefore it is important that we take the right action to make our services better, and that is what we want to try to do.

May I say what a pleasure it is to see the shadow Ministers, the hon. Members for Leicester West (Liz Kendall) and for Paisley and Renfrewshire North (Gavin Newlands), and to see the Minister in her place two days running? We are doing well here, so we are. The Minister tries extremely hard to answer the questions that we put forward, so I thank her for that. I am very pleased to see the Labour shadow Minister—a fellow Leicester City supporter—in her place. We won 3-0 last night, which was a good result. That is by the way and nothing to do with this debate; it is just for the hon. Lady and me to glory in that victory, as we do, personally and collectively.

We need to have better mental health services for patients suffering with this disease and to encourage more funding into research. The right hon. Member for Leeds Central was right about the importance of research; I will comment on research later, but he was right to mention the need for it. In a way, this debate follows on from some of the questions about research in the debate on pancreatic cancer that I secured in Westminster Hall yesterday. We have to focus on research in a deeper and stronger way, and I look forward to hearing the comments of others about what we can do for our constituents.

Health is a devolved matter for Northern Ireland and is not the Minister’s responsibility, but I want to sew a Northern Ireland perspective into the debate. I will replicate the perspective heard in the right hon. Gentleman’s comments, and talk about what we in the United Kingdom need to do in Northern Ireland, Scotland and Wales. I look forward to hearing from my friend and colleague in the SNP, Steven Bonnar, who always makes a significant contribution on health issues.

Huntington’s services across the UK lack efficiency and funding, especially in Northern Ireland. That is not the Minister’s fault, but it shows what this is all about. One of my constituents made me aware of the fact that there are only two Huntington’s-qualified nurses across the whole of Northern Ireland—for a population of 2 million. Wow! It shocks me to the core when I read that and have to convey the situation in Northern Ireland. As a result of the right hon. Gentleman raising my awareness of this matter, I will take a deeper interest in it from a Northern Ireland perspective. I will follow this up with Robin Swann, the Northern Ireland Health Minister.

In that population of 2 million, the rate of Huntington’s has increased from 6.4 people per 100,000 in 1991 to 12 per 100,000—almost doubling over that period of time. Approximately 223 people have been diagnosed with the disease back home, leaving many with the possibility of getting it genetically. That is one of the worst things: someone could be carrying the disease without knowing—this rare condition is also known as the disease of families.

Liz Twist, who has left her place, is the chair of the all-party parliamentary group on rare, genetic and undiagnosed conditions. Huntington’s is a rare condition, and sometimes the symptoms are not as prevalent, making it even more essential for people to be aware of them. I would subscribe to the hon. Lady’s line of thought that this should be categorised as a rare disease: statistically, the numbers suffering from this disease are not large, and it is rare in the effect that it has. Government have a policy to deal with rare diseases, so maybe it is time to consider this as one of those, Minister.

Huntington’s Disease Association Northern Ireland has been instrumental in providing support for families—it is not all doom and gloom in Northern Ireland for the families and those who support them. The association has a lovely motto: “Families at the heart of all that we do”. That conveys the importance of what it does, bringing families together so that they can help and reach out to each other. The right hon. Member for Leeds Central referred to that point, and I would reiterate it.

The organisation offers care to loved ones and encouragement throughout the process. Not only that, but it provides hope for those dealing with Huntington’s. Currently, 15 clinical trials of different treatments are under way. We should take some encouragement from that and have hope of a cure. With 15 clinical trials taking place, there is hope that one day soon—not too far away—we will have a cure. If we have that cure, we can deal with these issues better personally.

Sorcha McGuinness of HDANI has stated that, by the late stages of the condition, people will require 24-hour care, as the right hon. Gentleman referred to. They will be unable to move, speak or sometimes even swallow. Other diseases we have spoken about, such as motor neurone disease, are similar.

Photo of Liz Saville-Roberts Liz Saville-Roberts Shadow PC Spokesperson (Home Affairs), Shadow PC Spokesperson (Women and Equalities) , Plaid Cymru Westminster Leader, Shadow PC Spokesperson (Justice), Shadow PC Spokesperson (Business, Energy and Industrial Strategy), Shadow PC Spokesperson (Transport), Shadow PC Spokesperson (Attorney General)

The hon. Gentleman is speaking movingly and powerfully. Members will be concerned when we hear from constituents who are being refused personal independence payments. The procedure that applicants—people with Huntington’s disease and their families—have to go through to get PIP, to which they are entitled, is almost a test of their perseverance. As MPs, many of us have to deal with these things, but there must be a better way of dealing with families affected by conditions such as Huntington’s. Given what they are likely to need and that their care needs are so great, we must find a better way of dealing with this issue.

Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health)

I thank the right hon. Lady for her intervention, which clearly outlines another issue. It is not always health alone that is an issue; it is also about not being able to work again, as the right hon. Member for Leeds Central said. There is the financial impact on families. There is going on to benefits, which are probably alien to those applying. The system needs a wee bit more compassion for those who are under financial pressure. When they state that they have Huntington’s disease, the reality of what that means should figure in how they are helped through PIPs and other benefits. More often than not, we—elected representatives—come to an acknowledgment and knowledge of those matters through constituents who apply for PIPs. We understand a bit better what they are doing. There is one lady in my office who does nothing but benefits—five days a week. That gives Members an idea of the magnitude of this issue. The right hon. Lady is right, and I thank her for her intervention.

As the disease becomes increasingly debilitating, there is a need for more trained specialists in it. I ask again the question asked by the right hon. Member for Leeds Central, and we look to the Minister for help: what can be done, and what is being done, to increase the numbers of trained nurses? The disease affects the whole of this great United Kingdom of Great Britain and Northern Ireland, so what discussions has the Minister had, or will she have, with the devolved Administrations to ensure that there is a universal strategy for moving forward that encompasses us all?

A nurse who is qualified in Huntington’s plays a key part in the patient’s life, as the link to mental health. Physically, the patient’s body is dying—that is what is happening. Mentally, the disease affects them with anxiety, depression and all those issues. They feel it as it overtakes them and as their bodies decay. The nurse is also the link to neurology, GPs, social services and occupational therapy. I come back to the comment about PIPs made by Liz Saville Roberts. When our staff fill in PIPs forms, we look at how occupational therapy can add aids that help patients around the house. There is only so much that can be done for Huntington’s, and perhaps other diseases, but there is a key role for the occupational therapist in helping families to deal with it, whether that means a bed downstairs, an extension to the house or a walk-in shower. At certain stages of the game, of course, those things will not help, but perhaps early on they can.

In the area covered by the South Eastern Health and Social Care Trust, which includes my constituency, patients are referred to the Belfast Health and Social Care Trust specialist nurse, and the cost is covered by the Health and Social Care Board. Patients living in the western, northern and southern trust areas in Northern Ireland have no access to Huntington’s disease specialist nurses. Some sufferers have described the condition as a vacuum of silence—that is what it is. They feel almost isolated—on their own—and they are very much dealing with all the issues without help. When people are living in complete isolation, with no assistance, it is important that there is someone they can turn to.

Although I appreciate that health is devolved in Northern Ireland, the situation unfortunately remains the same in the rest of the UK, as the right hon. Member for Leeds Central said and as others will as well. There is no equality of care, and Huntington’s disease patients still feel left behind. Through this debate and through awareness raising, we must try to address that. If the number of people diagnosed with Huntington’s disease continues to rise, the Government must review its status as a rare disease. I said that earlier on, and I say it again. Perhaps we need to move it into a priority category as soon as we can.

I look to the Minister, as I will continue to do whenever she is responsible for the answers, and to her counterparts in the devolved Administrations to initiate funding for greater care for those in the early and latter stages of the disease. We referred to those 15 clinical trials earlier. The right hon. Member for Leeds Central referred to the clinical trials and how important it is to find a cure, help that research and bring new symptoms to light.

Familial carers desperately need their loved one to have professional care, so that they can seek some respite, without being sick with worry about them. They need respite care—we say that often, but Huntington’s disease is such an all-encompassing disease that it totally takes over the life of families. That respite care has to be there to give them a half-day or even a few hours off from the 24/7 focus they have. Some indication in the Minister’s response that there will be some help with respite care would be helpful.

Photo of Gavin Newlands Gavin Newlands Shadow SNP Spokesperson (Transport) 10:05 am, 9th November 2022

It is a pleasure to serve under your chairship, Mr Robertson, and to follow Jim Shannon, who is so often left until the end in these debates. I congratulate Hilary Benn on securing this important debate on what is a very serious issue and on setting it out so thoroughly with his typical style and power. It is very apposite that the debate is being held today, just a few days before the Scottish Huntington’s Association has its first family gathering since the start of the pandemic, which is taking place in Falkirk this Saturday. I hope they enjoy themselves.

As the right hon. Member for Leeds Central set out so well, this is a complex, hereditary neurological condition that impacts not only individuals but entire families across many generations. There is currently no cure, and children of parents diagnosed with Huntington’s are at a 50% risk of inheriting it. In 2019, I was contacted by the Scottish Huntington’s Association, which is based in my constituency, regarding the ongoing stigma and discrimination faced by the children of parents with Huntington’s disease, due to the possibility that they may inherit it. The need to raise awareness of the challenges that individuals and families in the Huntington’s community experience is as prevalent today as it was then. Indeed, a recently published YouGov survey on the disease shows the scale of the challenge: only 37% of UK adults were aware that Huntington’s is related to the brain; only 36% were aware that it is incurable, gets worse over time and is ultimately fatal; 45% did not know that the primary cause is an hereditary condition; and, crucially, 25% had never even heard of Huntington’s.

People and families living with HD face multiple challenges, many of which have been highlighted by the right hon. Member for Leeds Central. Another issue that the SHA highlighted to me is insurance. Something that most of us take for granted can be entirely unobtainable or unaffordable for those with, or at risk from, HD.

The SHA is the only charity in Scotland dedicated exclusively to improving the lives of people impacted by Huntington’s. The organisation takes a family-centred approach, with a focus on delivering change for local communities through a team of specialist staff, youth advisers and financial wellbeing services. Their work has been not only recognised but replicated at both national and international levels as a model of excellence for the care and support of the Huntington’s disease community.

In 2015, the person-centred national care framework, which has been referenced, was developed by a multi- disciplinary expert group led by the SHA, with funding and support provided by the Scottish Government. At the core of that framework was the need for every NHS board area to have a sufficient number of HD specialists available to support families in their Huntington’s journey, as well as a Huntington’s disease clinical lead. The SHA said at the time:

“The development of this Framework—the first of its kind in the world—presents Scotland with a unique opportunity to significantly drive up health and social aspects of care and support provided to HD families throughout the country.”

I want to stress that this is entirely party apolitical: the framework had the support of all parties in the Scottish Parliament.

There are five guiding principles of the national care framework. The first is a person-centred approach:

“An approach to providing health and social care which puts an emphasis on understanding the world from each individual’s perspective.

The Person Centred Approach makes the quality of the relationship between the individual and those providing support central to the process. Understanding the emotional life of each individual is important to ensure that care can be tailored accordingly.

In HD this also includes understanding the unique ways that HD changes how someone might think or behave and adapting care around the person to take account of this.”

The second principle, which is also crucial, is a family systems approach:

“An approach ensuring that the needs of the whole family are taken into consideration.

The Family Systems Approach promotes an understanding that the impact of HD affects not individuals but entire families.”

The third principle is a biopsychosocial—that is a bit of a mouthful—model of health and disability:

“An approach that ensures that—as well as understanding the health impact of HD—health and social care staff also consider the social and psychological impact of the disease for each person.

This approach fits closely with the person centred approach.”

The fourth principle is personalisation:

“A way of thinking about delivering services that tries to design them to suit each individual rather than people fitting into predefined service ‘boxes’.”

Finally, and sadly, comes the palliative care approach:

“The active total care of clients whose disease is not responsive to curative treatment. Control of pain, of other symptoms and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best quality of life for clients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with treatment.”

Since the publication of the framework, services across Scotland have grown significantly, and the country is now edging closer to having an HD specialist and clinical lead in every mainland NHS board. To be clear, we have made massive strides in Scotland, but gaps still exist and more still needs to be done. I really hope that lessons can be learned from that approach for the rest of the UK, or indeed elsewhere. Astri Arnesen, the president of the European Huntington Association, has said:

The Framework stands out to me as an invaluable resource on how to deal with HD. It is exactly what we need—not just information about HD but insight on how life with HD can be and how it can be managed whether you are impacted by HD directly or a relative, friend, colleague or anyone in touch with an HD affected family. The framework manages to cover the immense complexity of the disease in a very structured and straightforward way. A wonderful tool—hereby warmly recommended for Scotland and beyond its borders. I hope it will be widely shared and used!”

The support delivered by specialist services such as the SHA can provide invaluable care to individuals and families during their time of need and can be the difference between families coping and not coping. In Scotland, about 1,000 people have been diagnosed with Huntington’s, and an estimated 4,000 are at risk of inheriting the condition. In about 5% to 10% of cases, symptoms of the disease develop before the age of 20. A study by the University of Aberdeen highlighted that the number of HD cases in northern Scotland is now five times the global average, an increase of almost 50% over the last 30 years. Those numbers are, sadly, expected to be replicated across the rest of Scotland.

The SHA continues to highlight the challenges that specialist staff face due to the significant increase in cases over the years. However, that is still not reflected in the availability of resources, with some areas having no specialist services, despite the strides that we have made.

The chief executive of SHA, Alistair Haw, has said:

“Huntington’s disease is a hugely complex, widely misunderstood, and extremely difficult to manage condition. Specialist services are not some nice to have optional extra but an absolute necessity. Given the rise in cases over recent years a commensurate rise in specialist services is now required. Our Parliaments have backed this proposition resoundingly. The time has come for Scotland’s health and social care providers to take heed, and act.”

The growing need for specialist HD services has never been more prevalent, given the ongoing increase in demand. To conclude in a similar fashion to the right hon. Member for Leeds Central, the inexcusable burden placed on those caring for loved ones with Huntington’s must be addressed, in the hope of ensuring that all individuals and families impacted by the disease receive the highest quality and consistency of care, regardless of whether they live in Aberdeen, Aberavon, Ansty or Antrim. I hope that the Minister will take on board the contributions of all Members here today.

Photo of Laurence Robertson Laurence Robertson Conservative, Tewkesbury

We come to the Front Benchers’ speeches. I call Stephen Bonnar.

Photo of Steven Bonnar Steven Bonnar Shadow SNP Spokesperson (DEFRA Team Member) 10:15 am, 9th November 2022

It is a pleasure to see you in the Chair today, Mr Robertson. I thank Hilary Benn for securing this debate on what is an increasingly prevalent feature across our communities. He made a powerful and heartfelt contribution, and I thank him for it. I also place on record my full support for his early-day motion 72, whose aims echo those of a motion already passed in Holyrood by 98% of Members of the Scottish Parliament—we would like that sort of unity in this place—which aims to expand the range of specialist services available to all those with Huntington’s disease.

This has been an excellent debate, with powerful and thoughtful contributions. Jim Shannon spoke of the long-term impact on the life of a young person with the gene and how it can affect their whole life, marriage, opportunities, finances and all that goes with them as they go on their journey through this world.

My hon. Friend Gavin Newlands spoke of Scotland’s national care framework for Huntington’s, and its five principles. For obvious reasons, we are keen to champion that excellent body of work, and I hope that the Minister will take note of it. I thank all Members who have contributed to this morning’s excellent debate.

Huntington’s disease is an inherited condition. It is a progressive disease that slowly leads to the loss of the ability to walk, talk, eat, drink and make decisions of care for oneself, as well as the many other issues outlined by the right hon. Member for Leeds Central. It causes the progressive breakdown of nerve cells in the brain. That gets gradually worse over time and is ultimately fatal after between 10 and 25 years.

We have heard that each child of a person with the Huntington’s gene has a 50% chance of inheriting this awful condition. Affected children can likewise pass the gene to their own offspring.

According to the Scottish Huntington’s Association:

“Around 1 in 5000 people in Scotland has Huntington’s disease”,

which means that about 1,100 people are living in Scotland with Huntington’s disease,

“and an estimated 4,000-6,000 others…are at risk of inheriting it from their parents.”

Recent research has highlighted alarming figures, showing that the prevalence of Huntington’s disease in Scotland is almost three times greater than reported elsewhere in Europe, North America and Australia, and, as has been mentioned, is more than five times greater than the worldwide average. Those are not mere figures or statistics, worrying and sobering as they are. They are people’s lives—our citizens—and it is the duty of all of us to do our utmost to protect our people wherever possible.

With that principle in mind, the Scottish Government have released funding to allow University of Aberdeen academics and NHS Grampian Huntington’s disease clinic staff to lead pioneering research into tackling the disease. They have done so by leading on international drug trials, attempting to find ways to slow the progression of the disease and to increase our understanding of potential generational cures. The researchers have also gone one step further by engaging in close partnership with families affected by Huntington’s and working with the Scottish Huntington’s Association—we have heard much about its work already, and I place on record my thanks for it.

We must always remember that the disease is not about one individual, as we have heard. It is a cruel disease that has the power to destroy entire families. My heart goes out to all those who have lost loved ones through this horrible illness.

Children and young people have informed that body of work by agreeing to be interviewed about their experience of Huntington’s. That has allowed tools to be developed to support parents who face dilemmas about how, when and what to tell their children about the genetic condition. The use of such interviews is groundbreaking, taking a fully holistic approach to medical research within this field, and guided by one of the principles of Scotland’s national care framework—a family systems approach. I hope that that approach will be considered by other academics and Governments across the other nations of the UK.

Dr Karen Keenan, who conducted those interviews, explains:

“Living with a parent who has a serious hereditary degenerative condition like Huntington’s disease (HD) can be extremely difficult for children and young people. Many witness the loss of a parent as the illness progresses, whilst also discovering they are at 50% risk of developing the disease themselves in adult life.”

Families with Huntington’s disease can also face or feel considerable stigma, as my hon. Friend the Member for Paisley and Renfrewshire North outlined. There are higher rates of family breakdown and often there is secrecy about the existence of the disease within a family. The readiness to deal with a diagnosis is so important.

The Scottish Huntington’s Association is the only charity in Scotland exclusively dedicated to supporting families impacted by HD. It does this through a team of Huntington’s specialists, specialist youth advisers and a finance wellbeing service. The lifeline service provided by the association can and does make the difference between families coping and not coping. We can all find out more about its work by visiting hdscotland.org. I encourage all to do so.

Scottish-led research has been instrumental in identifying a need for age-appropriate information and support for children and young people impacted by the disease, and a need for parental guidance about disclosure to children and young adults. Over the last two decades, studies conducted by Scottish researchers have built an evidence base that has been used to inform support services for young people across Scotland, Europe and the rest of the world. It has influenced health and training, and social care professionals in the work that they do each and every day. I am sure we would all like to place on record our thanks and gratitude to them for that work.

I look forward to hearing what the Minister has to say on the Government’s approach as we all go forward together. Cross-party support in both the Scottish and the UK Parliament is quite apparent. The togetherness in this room during debates such as this, where we are all in total agreement, is another step forward in the right direction of raising awareness of this genetic illness.

Photo of Liz Kendall Liz Kendall Shadow Minister (Health and Social Care) 10:22 am, 9th November 2022

It is a pleasure to serve with you as Chair, Mr Robertson. I really congratulate my right hon. Friend Hilary Benn on securing this debate. He spoke with great authority and passion, including about the person he knows. It means a lot that this place can reflect how people really feel when they have to live with this terrible disorder and the impact it has on their families.

As we have heard, it is a totally life-changing disorder, impacting on not just the person’s health but, I would argue, everything that makes them human, which is their relationships with the people they love most. We are the sum total of our experiences and memories, and our relationships with people. When someone we love loses those memories and becomes a different person, it has a deep effect on us, too. As Members have already said, it is about not just the 8,000 people who are living with this diagnosis in the UK—including about 100 in Leicester and Leicestershire, which is the part of the country that I represent—but their 32,000 children. Growing up knowing that the disease may end up affecting them too is a terrible burden.

The support that should be available needs to be very broad, and I know from my experience of working in health and care over the last 30 years that that is one of the key areas where we fall down. When so many different types of services and support are needed, bringing those all together for a very specialist and rare condition is one of the biggest challenges we face in the health and care system. As we begin to know more about diseases, particularly through genetic developments, we are going to see more and more of this in future. If we can get it right for Huntington’s, we know that we may be able to get it right for other conditions.

There are three areas that I want to talk about today. The first is obviously the critical issue of access to mental health services. Provision of comprehensive, specialist psychological care is an essential component of treating and dealing with Huntington’s disease, yet we know that access to that specialist care is limited and varies significantly across the country. Despite clear commitments from statutory bodies over many years—over the past decade, at least—the situation has improved little for families.

Research from the Huntington’s Disease Association shows that a quarter of people living with the disease are unable to access psychologists, psychiatrists and other counselling when required. I was really struck when Jim Shannon said that there are only two specialist nurses for 2 million people in Northern Ireland. That simply is not good enough. Specialist nurses provide unbelievable support to families, and have the ability, knowledge and time to talk things through, so that has to change. That is part of a wider picture of significant staff shortages in mental health. Currently, one in seven mental health doctor posts and one in five mental health nursing posts are vacant. We simply cannot provide the access or standards of care that we need, including for people with Huntington’s disease, unless we tackle that problem.

As part of Labour’s plan for mental health, we would recruit 8,500 more mental health professionals, funded by closing tax loopholes for private equity fund managers and removing the VAT exemption from private schools. That would give us the extra staff we need across the board, including for people suffering from Huntington’s disease and their families. People often suffer from anxiety and depression after a diagnosis. My right hon. Friend the Member for Leeds Central talked about the impact on children and young people, who experience anxiety, depression and self-harm as a result of what they fear may lie ahead of them. We must focus on that issue.

Labour’s plan for mental health will also help to improve the quality of services, including by broadening the range of services available to those with severe mental illness. They will also require talking therapies and other interventions to help them live as well as they can as the disorder progresses. I hope the Minister will set out in detail what the Government will do to increase the mental health workforce, both in community services and in the specialist services that people with severe conditions require.

Staff shortages in mental health are a critical issue, but there are wider barriers. Many people with Huntington’s disease say that they struggle to get a specialist referral in the first place because there is a lack of awareness of the issue. My mental health trust has talked about the issues we have faced across county borders. We are developing specialist services for Huntington’s disease, but neighbouring counties are not, so it is challenging to get cross-county referrals.

The real issue is the problem of co-ordinating the care pathway for people with Huntington’s disease. People and families feel that they are in a constant battle with support services, and have to tell their story time and time again. The last thing that people faced with this terrible situation want is to battle the services.

The charities working in this area and my right hon. Friend have called for the development of NICE guidelines to ensure greater consistency in treatment and support for people with this condition. There is a very strong case for that, not simply because NICE guidelines exist for people with other conditions, but because unless something is set out for rare conditions, it is a real challenge to improve the quality of care and support. I ask the Minister to engage further on this issue with my right hon. Friend, the Huntington’s Disease Association and NICE, to see what progress can be made.

Families do not just need help from the NHS; they need help from social care too. The average survival time after a diagnosis of Huntington’s disease is between 15 and 20 years. During that time, the condition targets nerve cells in the brain, causing motor, cognitive and psychiatric symptoms that get progressively worse. The person living with the disease needs various sorts of care, including from the social care sector, but too often the burden is being shouldered by families in an unsustainable way. Many families say that, until the onset of the symptoms, they do not get the support they need. Again, there is a huge number of vacancies in social care—160,000, which is the highest it has ever been. Families have no choice other than to take on more of that burden themselves, which has a huge impact on their jobs, relationships and careers.

At the heart of Labour’s plan for social care is a new deal for care workers. It would allow us to recruit and retain the staff we need by ensuring fair pay and terms and conditions, and by improving training and career progression. We simply cannot give the families of people living with Huntington’s the support they need unless we have a properly staffed care workforce. We would also have a new partnership with families, so that they get proper information, advice and breaks, and so that we join up services and people do not have to battle their way around the system.

We cannot improve the quality of care and support for people with rare conditions such as Huntington’s unless families are equal partners. That needs to be at the heart of any future development, and particularly the NICE guidelines. The people who know how best to join up care and support are the families, because they do not see their loved one’s needs in separate departmental service silos. They do not think, “They have a social care need over here, and a health need over there”—they see their loved one as one person. We need families to help develop the NICE guidelines.

Last but by no means least, we need to touch on the financial strain facing those with Huntington’s disease. People with Huntington’s and their families tend to have lower incomes. That is often because the person has to give up work, as do their family members in order to care for them, but lower than average incomes are compounded by higher than average costs. Because of the involuntary movements associated with the condition, people with Huntington’s need higher-calorie diets, which means increased food bills. They also have to stay at home, which means higher energy costs, and extra washing is required, too.

The Huntington’s Disease Association recently did a survey looking at cost of living issues. It found that many people were cutting back on the absolute basics and were really worried about the increasing risk of debt and homelessness. Indeed, it wrote to the Chancellor about this issue on 26 October. Could the Minister encourage the Chancellor to reply to that letter? This is a pressing and immediate issue that people are facing. Members will know that Labour has called for a windfall tax on gas and oil profits in order to support struggling families during the cost of living crisis, and I wonder whether the Government will now agree to that.

There is hope for the future. As my right hon. Friend the Member for Leeds Central said, there have been developments on diseases that we thought nothing could ever be done about. There is hope for scientific developments, especially in genetic technologies, but there are also things we can do in the here and now to better support families, such as improving the mental health and social care workforce, and dealing with the cost of living pressures that families face. I hope that the Minister will address those points.

Photo of Helen Whately Helen Whately Minister of State (Department of Health and Social Care) 10:34 am, 9th November 2022

I congratulate 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 Jim Shannon for his speech. It is a pleasure to be together in Westminster Hall for the second day running. Gavin Newlands gave a perspective from Scotland, and we also heard from my right hon. Friend Philip Dunne and 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.

Photo of Matthew Pennycook Matthew Pennycook Shadow Minister (Levelling Up, Housing, Communities and Local Government)

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?

Photo of Helen Whately Helen Whately Minister of State (Department of Health and Social Care)

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, 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 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.

Photo of Hilary Benn Hilary Benn Labour, Leeds Central 10:46 am, 9th November 2022

I thank all colleagues who have been present—those who were able to stay to the end of the debate, and those who obviously had other matters to attend to. There has been a striking unity of purpose and resolve. I thank Jim Shannon for his contribution. He will clearly follow up on the point about Huntington’s nurses in Northern Ireland. I did not know that statistic. I am sure that he will do so with his normal dedication.

I thank Liz Saville Roberts, who made a really important point about PIP. It is a more general point about something that many of us will have experienced. We know what it can be like to make a PIP application. Figures for tribunal cases—I looked a couple of years ago at the figures for Leeds—show that more than 50% of people who appeal to the tribunal have the decision overturned, so we have not got that process right. To draw a parallel, if 50% of people convicted in a criminal court had their conviction overturned in a court of appeal, there would be a national scandal and outrage; yet over half of the cases that eventually get to the tribunal—after months, because there is a long delay—find that the original assessment by the Department for Work and Pensions was not correct. There will undoubtedly be people with Huntington’s in that group, so the right hon. Member raised a really important point.

I thank the hon. Members for Paisley and Renfrewshire North (Gavin Newlands) and for Coatbridge, Chryston and Bellshill (Steven Bonnar) for talking about the work being done in Scotland, and for highlighting the high and increasing incidence of Huntington’s in that part of our United Kingdom. Why that might be, and whether it is due to better diagnosis, we probably do not know. I also thank my hon. Friend Liz Kendall, who talked about the constant battle. She made the powerful point that if we could get it right for Huntington’s, it will help us to get it right for other diseases.

That brings me on to what the Minister had to say. I am genuinely grateful for her response and its tone. She said that she would take things away and look at them. The Huntington’s disease community will be back. I look forward to her response, because the request for a care co-ordinator is, as she can tell, heartfelt. She is going to go away and look at it, and I am sure that is the most one can ask for, but we would like to see a result in guidance and policy. On NICE guidelines, I heard her argument, which I anticipated she would make, but I welcome the fact that she will go away and look at the issue again. We have NICE guidelines for the other conditions that I mentioned. Given the nature of this disease, its all-encompassing impact, and what we have heard, including from Huntington’s disease associations around our country, about the difficulties that people experience, the case is overwhelmingly strong for NICE guidance to be produced on Huntington’s. We shall return to that. I suppose I take what she said as perhaps a slight opening of the door.

I am very grateful to the Minister for saying that she will go away and look at the issue of mental health, and will pass on to the Defence Secretary the point that I raised about the armed services. In one sense, of all the replies to the parliamentary questions that I asked, the one to my question to the Defence Secretary was the most encouraging; he said that the services would be willing, in the right circumstances, with evidence, which I accept that candidates will need to provide, to consider recruiting those with the gene who they do not think are likely to get the disease.

I thank the Government for the money that they are putting into research. There is always a need for more funding for all sorts of research. The Minister was right to start with that, because if we can find a way of eradicating this gene, treating it, and preventing it from being passed on, all the other things that we have talked about will be echoes of the past for those who lived in an era when there was not a cure. All of us recognise that that day cannot come soon enough, but in the meantime, we need to be better at helping those who have the disease, and the families and loved ones who care for them.

Question put and agreed to.

Resolved,

That this House
has considered Huntington’s disease.

Sitting suspended.