New Hospitals

Hilary Benn Excerpts

Thursday 25th May 2023 Commons Chamber

[Steve Barclay]

There are different issues around construction and service design. In terms of service design, there will need to be discussions with local clinicians and others. As my hon. Friend knows, with his scheme in North and Mid Hampshire, there are issues around the new site for junction 7 of the M3, where there is significant work on potential land acquisition and what upgrading of the motorway would be required. There is a question about the size of the hospital versus other services offered locally. Those are the issues we are keen to get in discussion with the North and Mid Hampshire trusts on, and that will be part of the rolling programme we take forward.

[Hilary Benn (Leeds Central) (Lab)]

On the Leeds project, I welcome the announcement by the Secretary of State, but can I press him on the detail? How much money is going to be allocated to the Leeds project? Will the standardised approach that he has talked about have any flexibility within it, given the particular characteristics of the Leeds site, which he knows about, and the fact that, as he is also aware, it is cleared and ready to go?

[Steve Barclay]

For reasons of commercial confidentiality, which I am sure the House will recognise, it would be unwise to say what each scheme is allocated—that would be most interesting to the developers bidding for that work. That is why we will not set out individual allocations. As the right hon. Gentleman knows, I have been to see Leeds and I recognise the importance of the work there. On the modular design 2.0, I pay tribute to the work that Lord Markham has done; he brings real commercial experience into the use of modular methods of construction. Those schemes are designed to have some flex. I sat for four years on the Public Accounts Committee, and one of the recurring themes during my time there was costs increasing because specifications were changed mid-build. One of the advantages of the modular method of construction is that, by putting all the advice into the design at the front end, we can standardise design, have the benefits of scale and maximise the “national” in National Health Service, rather than having individual schemes, all of them at risk of specifications changing and costs inflating.

Brain Tumour Research Funding

Hilary Benn Excerpts

Thursday 9th March 2023 Commons Chamber

[Hilary Benn (Leeds Central) (Lab)]

The reason that I rise to participate in this debate is that just under two years ago a constituent wrote to me. He revealed that he had a brain tumour and asked me to go along to an APPG meeting to discuss ways in which we could try to find a cure. I went along and I must confess that little did I know then that I would end up taking part in the inquiry. We had, I think, six evidence sessions and we heard from a lot of people. The report, which the hon. Member for St Ives (Derek Thomas) referred to, distils into its recommendations what we heard from those who contributed and who were very patient in answering the many questions that we put to them.

I pay tribute to the hon. Member, who chairs the APPG and who chaired the inquiry. He has done so brilliantly, cheerfully and in a way that has brought out the best from all of the people who appeared before us, who came along to let us draw on their expertise, to share their frustrations and to offer their ideas and suggestions. It has been an honour and a privilege to work with him and all the other hon. Members here who took part. I also thank the wonderful secretariat from Brain Tumour Research for supporting us in our work and for pulling the report together so skilfully.

A cancer diagnosis is a terrible thing, although statistics tell us that one in two of us will receive such a diagnosis during our lifetime. I think most of us, if we are honest, would say that we wince when we hear the word “cancer”, because all too often it conjures the idea of a downward path to the end of our lives. Any of us who has been through that experience, either ourselves or, in my case, with those we love, knows exactly how that feels, but death is not always the outcome. Our lives are not preordained, and we have seen real advances in the treatment of certain types of cancer in recent years—breast cancer is a good example—and, overall, I am advised that cancer survival rates in the UK have doubled in the last 40 years.

But when it comes to brain tumours, the blunt truth is that there has been almost no progress at all. The five-year survival rate for glioblastoma, the most aggressive form, is 6.8%, and the average length of survival is between 12 and 18 months.

[Siobhain McDonagh (Mitcham and Morden) (Lab)]

My right hon. Friend refers to the average length of survival as being 18 months. Actually, it is nine months. His figure suggests that everybody completes treatment. Nine months is the life expectancy of somebody diagnosed with glioblastoma.

[Hilary Benn]

I absolutely take my hon. Friend’s point, which reinforces, in all of us, our awareness of just how awful this diagnosis is, and it is the answer to the question that every person who receives such a diagnosis asks their doctor: “How long have I got?” Eight or nine months is no time at all.

Dr Matt Williams, a clinical oncologist, is quoted in the report:

“Every week I have to tell patients that there is nothing more we can offer. I have now been a consultant for 10 years and these conversations are the same now as when I started.”

That is why a brain tumour is a devastating diagnosis. A patient quoted in the report says:

“It’s devastating and living with a time bomb in your head.”

That is a very good description of what it must feel like. In those circumstances, what do patients and loved ones want? What we would all want is to make sure that we are doing everything we possibly can to try to change that.

[Mr Carmichael]

I speak about this publicly from time to time, and I am always struck by the number of people who say to me, “Thank you for doing that, because this took my father”—or their brother, their neighbour, their friend or whoever—“and I had no idea that this had been their life experience.” When I was growing up, 40 or 50 years ago, a cancer diagnosis really was not talked about—it was almost taboo—and I think we are in the same place with brain cancers. If we are to make the progress we need, we all have to start talking about this much more. The experience has to be shared.

[Hilary Benn]

I agree completely with what the right hon. Gentleman has said. To borrow a phrase, it’s good to talk about brain cancer. That is why we are here in this Chamber today. We are here to raise awareness, because loved ones dying remains, among some people, a great taboo, about which we are fearful of saying anything. When my late first wife died of cancer at the age of 26, I was struck by the fact that my colleagues at work, though wonderful people, found it almost impossible to mention what had happened when I went back to work. I understand why, because before it happened to me I would have been like them. I would have thought I would say the wrong thing or cause someone to break down in tears. When it happens to you, you come to realise that there is nothing special to say; you just have to go up to the person and say, “How are you?” and listen. Yes, they will cry and you will cry, but that is so much better than people hiding it inside, with the suffering that it brings.

That is what this report is trying to do—it is trying to make sure that we are doing everything we can. There are good reasons why brain cancer is proving so difficult to treat. I learnt about that, as did the other members of the inquiry panel. The brain is a complex organ. I had never heard of the blood-brain barrier before. I am not sure I still understand it, but I heard a lot about it in the evidence we received. We learnt about treatments that had been tried and had failed, and about the desperation of those with brain tumours to get on to trials that might just offer some hope, not of a cure, but of a few more months. For someone who has received a diagnosis of a brain tumour, every second—let alone every minute, week or month—is extremely precious. We heard of the despair of people who are unable to get this for themselves or their loved ones, and it is so particularly poignant when it is children who have a brain tumour.

So we are calling for a renewed and determined focus on doing every single thing we can to change the situation, not because we are naive about the difficulties, which are many, but because it is the very least we can do for the people who find themselves in this position. So, of course, we have called for greater investment. I thought the hon. Member for St Ives explained well why the funds that have been made available and set aside for brain tumour research—I welcome them enormously—have not all been allocated and spent. It is not for want of willingness; it relates to the point he made about the lack of suitable research proposals coming forward and the frustration, which came across so clearly in that one evidence session in particular, of those who have put their research proposals to the research bodies, have been knocked back and feel, “They did not really understand what we are trying to do.” That is because those who sit on those panels may not have expertise in the field of brain tumour research, which is why we strongly encourage the research councils to look more widely at, and more favourably upon, proposals for brain tumour research.

We have a funding system that has been built in silos. It needs to be better joined up, from basic science through to clinical trials. At this point, I wish to pay tribute, as we all would, to the clinicians, scientists, doctors and others who work their socks off to try to crack this problem and find a treatment. That is why we have made some very specific recommendations. The example of biobanking and tissue samples seemed so simple when people talked about it. When we are dealing with any disease, but particularly this one, does it not make sense to pool all of the information that we have available about what we have learnt, what we still do not know, what may work and what may not? Clearly, that is not happening, even though it is a simple thing to do so that anyone undertaking research can draw upon all the available material as they apply their mind, scientific skill and determination to finding a cure.

We are also calling for patients with brain tumours to have equity of access to trials of new anti-cancer drugs that currently may be available only to patients with other types of malignant cancers. There can be a fear that if other people are brought into the trial, it will somehow skew the result. However, if a person is dying, that is not their concern. Their concern is: “Might this possibly work to save my life or the life of the person I love?”

I hope that this report and the views of all those people who so generously gave their time—we thank all of them—will have an impact as, collectively, we roll up our sleeves, redouble our efforts, and express an even greater determination to find treatments and cures for this cruel disease that shortens the lives of so many people whom we have come to know or know already and love. What keeps us going in difficult times is hope, and I think these recommendations offer exactly that. As one patient said, “If you have hope, you have life.”

--- Later in debate ---

[Will Quince]

I will specifically address brain tumour research, but clinical trials are taking place in acute trusts across the country. There are fewer clinical trials in this area than I would want, and I will explain why a little later. Finally, I pass on my very best wishes to Margaret.

My hon. Friend the Member for Buckingham (Greg Smith) urges us to act on the report’s recommendations, and he is right to do so. I will look at those recommendations very carefully. He touched on the £40 million, and I will come on to that a little later. He also mentioned childhood brain tumours. There is insufficient time to go into the level of detail I would want to on that subject, and I would be happy to meet him and members of the all-party group to discuss what more we can do on childhood brain tumours and the treatment thereof.

The right hon. Member for Hayes and Harlington talked about the courage and fortitude of families. He shared Sonya’s experience and talked about the importance of support for loved ones, and I will raise those issues with my counterparts at the Department for Work and Pensions. My hon. Friend the Member for Meon Valley (Mrs Drummond) shared the impact on the Fearn family, which outlines why it is so important that we get this right. She touched on the importance of awareness, and how in this area there is a high prevalence of late presentation and late diagnosis, and the impact that has on prognosis.

The hon. Member for Luton North (Sarah Owen) told Amani’s story and how the family had to fundraise to travel to take part in an international clinical trial. Of course, I send my condolences to Amani’s family, and I would be happy to meet Khuram and Yasmin to discuss this further. The hon. Lady asked where the money allocated is. It sits within NIHR and remains there; funding is allocated and it awaits suitable, fundable applications, so that is where we need to focus our efforts.

My hon. Friend the Member for Great Grimsby (Lia Nici) rightly praised the work of the all-party group, which probably makes this the right time to turn to the report, “Pathway to a Cure”. I very much welcome the group’s investigation and report. I acknowledge the problems and issues that have been identified. Let me be clear: we want to fund more high-quality research to accelerate the field and help patients. The report makes a number of recommendations for actions by research funding agencies, such as the MRC and NIHR, on co-ordinating action and making funding available. Crucially, the report is clear that to make advances in brain tumour research we must bring together diverse disciplines. There are detailed recommendations here, with potentially far-reaching consequences, and the MRC, NIHR and I will consider responses and come back to colleagues.

Members from across the House will understand that this debate is not necessarily the place for a detailed response to the report and every recommendation. Notwithstanding the strong case made today on the importance of research, we have to tread carefully. This is not the first condition into which I have probed and asked lots of questions about why we have not been funding all the research, and why funding is sitting unallocated, given the bids that have come in. We have to tread carefully because the clinicians and scientists rightly push back, saying that lowering the scientific quality bar for access to scarce public research funds, which would not be won in open competition, is unlikely ultimately to be a good solution. We must get this right, and at the heart of that is ensuring that we support applicants to make high-quality bids, which will then translate into funding awards. Of course, we want to fund the best science to help patients and ensure that our country remains at the forefront of scientific progress.

All Members, from across the House, rightly mentioned the crucial importance of research in tackling cancer. A theme of the report and the debate has been that of co-ordinating action along the translational pathway; that starts with the fundamental science and early translation, typically supported by the MRC, and goes through to the applied health and care research, which is funded by the NIHR. Working with the NIHR, the MRC has developed guidance and toolkits for teams to help them to navigate the scheme that is best suited to their proposal. However, I have heard today that we are not giving the right support to those making applications, and where applications are rejected we need to look into that further.

[Hilary Benn]

I am listening carefully to the Minister. What does he say to the argument that we heard during the inquiry that the people who sit in judgment, quite properly, on bids might not have a sufficient degree of expertise in this area to be able to judge whether the research proposals are suitable to be funded? I do not expect an answer now, but will he undertake to go away and look at that point?

[Will Quince]

I thank the right hon. Gentleman for his question, and I shall try my best to answer it. It is a question that I listened to very carefully when he posed it in his contribution, and it is one that I have posed myself when looking at the NIHR and what it does. The committees for NIHR and the programmes that come forward receive a diverse range of applications, which is understandable. Their make-up, therefore, is that of a broad range of expertise. As I said a few moments ago, they may or may not contain experts in the field of brain tumour research. However, having said that, the NIHR committees then use peer review from appropriate experts, which would include brain tumour expertise as relevant to the brain tumour proposal that is under review in each individual case. That is there deliberately to inform their decision-making. They co-opt particular expertise on to the committee, which is an option always available to NIHR if the committee needs that particular input. If clinicians and scientists are telling the right hon. Gentleman that that is not happening, or is not happening to the degree that we would want and expect it to, I would want to take that away and look at that further.

I wish to come back to a comment that the right hon. Gentleman made about brain tumours and why they remain a challenging area for research. There is the complexity of the brain itself as an organ, and the way that perception, memory, and emotion— everything the brain does—can be affected differently by different types of tumour. Brain tumours are different diseases that can differ in terms of histology, molecular characteristics, and clinical behaviour, meaning that many different treatments must be developed. Brain tissue is precious and obtaining it for research purposes can be difficult. Obtaining biopsy samples is risky and invasive, and animal models are of limited applicability. Additionally, the community of active clinical researchers is relatively small—it is certainly small in relation to the scale of need. This all makes research on brain tumours challenging, as has been well articulated today, and progress, if we are to make it—and I am determined that we will—requires a collaborative effort between researchers, clinicians, and funding agencies.

How do we grow the field of brain tumour research? This was a challenge from the shadow Minister. We have been taking action to grow the field by supporting researchers to submit high-quality research bid proposals. That has been supported by working with the Tessa Jowell Brain Cancer Mission, which hosts workshops for researchers, and provides research training specifically for clinicians.

Since the initial Government announcement of £40 million over five years ago, we have spent £33.9 million on brain cancer research across Government. I am conscious that there is a difference in the two figures, but that is because we are combining spending from UK Research and Innovation with the spending of NIHR. However, as I have made clear already, we want to spend more and the NIHR welcomes funding applications for research into brain tumours, and the Department of Health and Social Care priority call on brain tumours remains open. Critically, all applications that have been assessed as “fundable” in open competition have been funded, and that will continue.

As I have said, brain tumour research is one of the most difficult scientific challenges of our age. We need to invest across the translational pipeline, from fundamental science through to effective treatments. These are long-term challenges and we are committed to them for the long term. To be clear, the £40 million announcement was a signal to the research community that we are serious about funding research in this space. It is not a ceiling. If we can spend more on the best quality science, let me assure the House that we will do so. I understand and share the frustrations that only a proportion of the £40 million on brain tumour research has been allocated so far, but this funding will remain available. I genuinely believe that the funding for brain tumour research is promising and we look forward to considering the all-party group recommendations with colleagues across Government. I am confident that the Government’s continued commitment to funding will help us make progress towards effective treatment.

Oral Answers to Questions

Hilary Benn Excerpts

Tuesday 6th December 2022 Commons Chamber

[Steve Barclay]

I know they are raring to go because I personally have spoken to the chief exec about this scheme, but I can offer my hon. Friend something better: the Minister of State, Department of Health and Social Care, my hon. Friend the Member for Colchester (Will Quince), will personally be visiting shortly to discuss this further. But I also need to be transparent with the House: we are fundamentally changing how we are going to be building hospitals in the NHS estate—[Laughter.] I am not sure why something as important as new hospitals—learning from the Department for Education and the Ministry of Justice through a more standardised model that allows us to deliver more at a cheaper unit price and get them built quicker—is a source of mirth to Opposition Members. It is important that we standardise those designs, and that is what my colleague the Minister of State will be discussing with my hon. Friend.

[Hilary Benn (Leeds Central) (Lab)]

The new children’s hospital, the new adult building and the maternity centre at Leeds General Infirmary will bring much-needed new facilities to Leeds and the region, as well as wider economic benefits. It is unusual among the hospital building schemes. As the Secretary of State knows, the site is clear and the plans are ready, so may I urge him to give the go-ahead as soon as possible?

[Steve Barclay]

I visited that scheme over the summer. The right hon. Gentleman will know that the costs have inflated significantly since what was signed off by the Treasury in 2019. I think the point that has been missed by Opposition Members is that the way we deliver these schemes is to grip the cost better by using standardisation, and that is what I will be discussing with Leeds General. I agree with him that it is important that the scheme goes ahead, and we need to work together to make sure that it does so at a price that is affordable.

Huntington’s Disease

Hilary Benn Excerpts

Wednesday 9th November 2022 Westminster Hall

[Hilary Benn (Leeds Central) (Lab)]

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.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

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.

[Hilary Benn]

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.

[Patrick Grady (Glasgow North) (Ind)]

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.

[Hilary Benn]

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.

[Philip Dunne (Ludlow) (Con)]

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?

[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.

--- Later in debate ---

[Hilary Benn]

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 the hon. Member for Strangford (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 the right hon. Member for Dwyfor Meirionnydd (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 the Member for Leicester West (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.

Ambulance Services and National Heatwave Emergency

Hilary Benn Excerpts

Wednesday 13th July 2022 Commons Chamber

[Maria Caulfield]

We are not waiting for a crisis. I have set out the funding that we have put in place this year—£150 million extra funding for the ambulance service—and highlighted how we are boosting the workforce. In case the hon. Gentleman did not hear my opening remarks, there were nearly 2,300 more 999 call handlers at the start of June, and we have invested £50 million in NHS 111 capacity, to help us reduce demand. We have been doing this. There will be pressures on the ambulance service and our emergency services at times. We saw that with covid and the heatwave this week will put pressure on the NHS. There will also be pressures in winter. Opposition Members may think there is some magical way to avoid pressures, but there is not. We need to provide resources and capacity to ensure that the service can meet that demand.

[Hilary Benn (Leeds Central) (Lab)]

Further to the question about strokes, as we know, every minute counts. The Minister just told the House that in not every case is the ambulance response meeting the 18-minute time that she said is the target. Given that, what advice would she give to members of the public who think that a loved one has had a stroke? Should they ring 999 and hope that the ambulance will turn up within the 18 minutes? If not, should they put the person in a car or taxi and take them to A&E? When they arrive at A&E and say, “I think my loved one has had a stroke”, what confidence might they have that they will be seen quickly, given that time is of the essence?

[Maria Caulfield]

As someone who has suffered a stroke myself, I am very aware of the urgency of seeing stroke patients on time. I am not going to give clinical advice at the Dispatch Box. It is important that, if a person suspects a stroke is occurring, they dial 999 immediately. The ambulance callers will normally stay on the line with that person, advise them on what to do, depending on their symptoms, and get an ambulance to them as quickly as possible. Once they arrive in hospital, if a stroke is suspected, they will be seen immediately—we are not seeing reports of stroke patients being delayed once they are in hospital. It is crucial that those patients are seen urgently, and the advice is to dial 999 and clinical advice will be given to them over the phone.

Access to GP Services and NHS Dentistry

Hilary Benn Excerpts

Tuesday 21st June 2022 Commons Chamber

[Sajid Javid]

I absolutely agree with my right hon. Friend’s important point. In fact, I met my hon. Friend the Member for South West Bedfordshire (Andrew Selous) about that last week, and I agree with them both.

[Hilary Benn (Leeds Central) (Lab)]

Last month, a constituent contacted me who had developed severe dental pain. He phoned 40 dentists and not one of them could take him on as an NHS patient. It got so bad that he phoned 111 but was told that he was not eligible to see an emergency dentist. What advice would the Secretary of State give to someone in those circumstances? Many other hon. Members on both sides of the House will be able to tell similar stories. In the end, my constituent had to pay to go private, but that should not have happened. Why are our constituents being placed in that position?

[Sajid Javid]

I am sorry to hear about the right hon. Gentleman’s constituent. If he will allow me, in a moment, I will come on to the pressures that dentistry is facing and, most importantly, what we are doing about them.

Those pressures have come about for two reasons. First, there was a fear of infection, which was understandable in a context where 10 minutes in a dentist’s chair during the pandemic could have meant 10 days in self-isolation or, perhaps, worse. Dental practices were almost uniquely at risk of spreading covid, so their activity was rightly severely constrained across the world—not just here in England and across the UK—by the infection prevention rules that were necessary at the time. Despite all the innovations in dentistry over the last few years, dental surgeries do not have a Zoom option.

Secondly, the British people stayed away because of their innate sense of responsibility during the pandemic. As all hon. Members saw in their constituencies, people understood our critical national mission. Our GPs were doing their duty vaccinating people in care homes and in thousands of vaccination centres up and down the country, protecting the most vulnerable and working hard to keep us all healthy and safe.

When omicron struck—we all remember that period, which was not that long ago—I stood before this House and asked GPs to stop all non-emergency work once again. I did not take that decision lightly, but we were faced with a stark choice of having more lockdowns or accelerating our vaccine programme. We chose to accelerate, with help from all corners of the NHS and with the backing, at that time, of the hon. Member for Ilford North. I remember him standing at the Dispatch Box pledging his full support for that effort and rightly stating that the Government were acting

“in the best interests of our NHS, our public health, and our nation.”—[Official Report, 13 December 2021; Vol. 705, c. 795.]

He recognised that it was the right thing to do then; he has now conveniently changed his mind. I wonder why.

Oral Answers to Questions

Hilary Benn Excerpts

Tuesday 14th June 2022 Commons Chamber

[Maria Caulfield]

I cannot comment on health in Northern Ireland specifically as it is a devolved matter. IVF will be a significant factor in the women’s health strategy, because we recognise the disparities that exist across the country in how couples currently access IVF.

[Hilary Benn (Leeds Central) (Lab)]

The site for the new Leeds children’s hospital and the adult hospital building, the Leeds General Infirmary, will be cleared by the end of this month. The trust is raring to go to build these wonderful new facilities. Can the Secretary of State tell me when the final go-ahead for the construction will be given?

Childhood Cancer Outcomes

Hilary Benn Excerpts

Tuesday 26th April 2022 Commons Chamber

[Dame Caroline Dinenage (Gosport) (Con)]

I beg to move,

That this House has considered improving outcomes for childhood cancer.

I am grateful to the Backbench Business Committee for allowing us this debate, and to all the medical professionals, scientists, charities and, above all, the bereaved parents who have helped to inform it.

This debate is in honour of Sophie Fairall. Sophie was just 10 years old when she died last September, 12 months after having been diagnosed with a very aggressive form of cancer, rhabdomyosarcoma. During her illness, Sophie created a bucket list. It included lots of fabulous things. She wanted a pair of high heels and she wanted to cook with Gordon Ramsay. But Sophie’s list was very special, because she also wished for improvements in the way we look after others who were in the same position that she was. She wanted better play facilities for children in hospital wards. From her bed she painted ceramics, which were sold to raise £6,000 to buy new toys for her ward. Most hospitals only have play specialists at very limited hours. No data is even collected on the numbers of play specialists working in the NHS. So, on Sophie’s behalf, I ask the Minister to look at the provision of play specialists.

Sophie also wanted better hospital food for poorly children. She was worried about the parents who spent hours at the bedside and often did not get to eat at all. Often during her own treatment Sophie felt poorly at set mealtimes. Later, when she was feeling a bit better, there was no capability at the hospital to make her anything to eat. That is little surprise, because in Portsmouth hospitals the meals get sent from Wales, 200 miles away. In October 2020, following a review led by Prue Leith, the Government launched a new blueprint for hospital food. Can the Minister provide an update on how that work is progressing and how they plan to ensure nutritious, child-friendly food that can be delivered flexibly during children’s treatment in hospital?

After Sophie’s death, her fantastic mother, Charlotte, vowed to continue to highlight all the failings and missed opportunities she experienced in how we research, detect, treat and care for children with cancer, and how we improve cancer outcomes. Charlotte Fairall is here today and I pay tribute to her determination and devotion to that cause. [Hon. Members: “Hear, hear.”] I want to start with a spoiler alert for the Minister. Today, I am going to be asking for a new childhood cancer mission, a concerted effort to bring together the very best in research, genomics, training, treatment, philanthropy, medical and allied health professionals, the brightest and the best, to really change our approach to childhood cancer once and for all.

Childhood cancer is often referred to as rare, but it is the biggest killer of children under the age of 14. In this age group, there are around 1,800 new cancer cases every year. One in 320 people will be diagnosed with cancer before their 20th birthday, and 12 children and young people diagnosed every single day in the UK. How can that be described as rare?

The most overwhelming concern is around diagnosis. Early detection is the next frontier in adult cancer and for children it is even more vital, yet for so many children that diagnosis comes far, far too late. Sophie had suffered for a few months with tummy problems. The GP first suggested Gaviscon and then that it could be irritable bowel syndrome, but when Sophie started bleeding her very worried mum was advised that she might have started her periods. Sophie had just turned nine. By the time her worried parents took her to accident and emergency, the paediatrician found a 12 cm tumour in her little tummy.

Sophie’s story is not unusual. Over 53% of childhood cancers are picked up through A&E rather than through primary care, compared to 22% of adult cancers. In terms of diagnosing advanced cancer, as a nation we rank near the bottom of the European league tables. There is little or no training for general practice and let me reiterate that we are talking about the biggest killer of children under the age of 14. There are also no national referral guidelines for GPs with concerns that a young person may have cancer. A local GP from Gosport, who has practised for over 30 years, told me that he has no specific training on childhood cancer and would readily attend any training available. The Government are investing in 100 new diagnostic centres, but there must be robust referral guidelines in place, specifically regarding children, to help ensure that that improves the diagnosis of paediatric cancers.

The game changer would be paediatricians in primary care, which so many other countries have. Until then, we need childhood cancer training for healthcare professionals. We need national referral guidelines specifically for children, and we need an education campaign for parents on the signs and symptoms of childhood cancer. I know that is not straightforward. There are 88 types of childhood cancer with various symptoms, but we only need look at the success of the training and publicity surrounding the signs and symptoms of meningitis, which has seen numbers fall, with 461 cases of meningitis last year and 30 deaths. It is time to do the same with childhood cancer.

[Hilary Benn (Leeds Central) (Lab)]

I congratulate the hon. Lady and colleagues on securing this debate. She is making an outstanding case. One of the cancers that affects children is brain cancer. If we take glioblastoma, the five-year survival rate for children is only 20%. I am sure she recognises that not only do we need improved diagnosis—the point she is making—but more research. That is what the Tessa Jowell Brain Cancer Mission is about: more research to understand the make-up of those cancers, so we have more effective treatment and more children may survive.

[Dame Caroline Dinenage]

The right hon. Gentleman is absolutely right. I shall talk about research in a moment, but childhood cancer research is currently the Cinderella of cancer research and we need to do much more to address that.

Once a child has been diagnosed, the gruelling process of treating the cancer begins. Between 1997 and 2018, only 18 new drugs were approved for 22 paediatric oncology indications, and they were generally for quite specific or relapse cases. That means many children are often given the same treatments as adults—incredibly aggressive chemotherapies and radiotherapies—and in many cases children’s treatments have not changed for decades. Even if the cancer is beaten, the child’s body is often so ravaged by the treatment as to leave long-term impacts from which they may never recover.

Vaccination: Condition of Deployment

Hilary Benn Excerpts

Monday 31st January 2022 Commons Chamber

[Hilary Benn (Leeds Central) (Lab)]

This has always been a difficult issue, because it involves balancing two different sets of rights, and I think that the Secretary of State has made a sensible choice. He talked about changing circumstances, but the one thing that has not changed is the fact that a considerable number of NHS staff remain unvaccinated. In reaching this decision, what representations did he receive from NHS leaders about the impact that those staff having to leave—which they will not now have to do—would have on the ability of the NHS to cope, and was that a factor in the reaching of the decision? I think most of us sitting here today know that it probably was.

[Sajid Javid]

I hoped that my statement had been clear enough to answer a question such as that asked by the right hon. Gentleman, but I am happy to emphasise what I said earlier. As I said, when coming to any decision, but certainly this decision, we must bear in mind that there are benefits and there are costs. The costs to which I referred related to the fact that obviously some people would no longer be employed in the NHS or in care settings, and that balance remains important. Because of the change in the variant and real change in the benefit part of the equation, the scales tilted, and that is why I no longer think that the policy as set out is proportionate.

Covid-19 Update

Hilary Benn Excerpts

Wednesday 8th December 2021 Commons Chamber

[Sajid Javid]

That is a very fair question, and it requires a full explanation. There is new data since I was last at this Dispatch Box on the rate and growth in transmissibility, and there is new data, to which I referred in my statement, on the impact of the variant on vaccines. My right hon. Friend will know that if the vaccines were even a little bit less effective, especially against severe disease and therefore against hospitalisation, and if there was also a hugely growing infection rate, a smaller percentage of what would be a much larger number would still result in significant hospitalisations.

[Hilary Benn (Leeds Central) (Lab)]

Could the Secretary of State tell the House what his understanding is of the development of a new vaccine specifically to target omicron and when it might be available? Secondly, can he tell us what the latest evidence is on the protection against this new variant that two doses plus the booster will give to people?

[Sajid Javid]

From the moment they learned about omicron, the vaccine manufacturers, particularly those that make the so-called mRNA-type vaccines, started work on new omicron-targeting vaccines. It is hard to put a timing on this, not least because the companies themselves are unable to, but it is reasonable to think that they can move very quickly. Some of the conversations I have had suggest that they may well be able to have vaccines ready for trial within weeks. There would obviously have to be a trial to ensure that they were safe and effective, but there may be cases where they could be used in emergency situations. On the question about the two doses and a booster, we do not have reliable data on that at this point. However, the information I referred to in my statement on the impact of vaccinations showed that South Africans, in this case, who had had two doses of the vaccine and who had also had an infection had a higher level of protection than those who had not had an infection. This suggests that that hybrid outcome, where someone has had an infection and two doses, is not too dissimilar from having a booster shot and that it had a positive outcome.