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.
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.
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.
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.
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.
MP for Leeds Central