(5 days, 1 hour ago)
Commons ChamberI call Dame Siobhain McDonagh, who will speak for up to 15 minutes.
I beg to move,
That this House notes that survival rates for brain tumours have seen little improvement in decades and that brain tumours remain the biggest cancer killer of children and adults under 40; expresses concern at the limited availability of clinical trials for brain tumour patients; calls on the Government to set out a clear plan to increase survival rates, including accelerating access to clinical trials and innovative therapies; further calls on the Government to support the expansion of tissue freezing and storage to enable research and the development of new treatments; and also calls on the Government to ensure the timely deployment of the research funding committed in 2018 through the National Institute for Health and Care Research for brain tumour research.
I thank the Backbench Business Committee for the allocation of this time, and I am grateful to have secured the debate, alongside the hon. Member for Witney (Charlie Maynard), following the publication of the national cancer plan.
Now is the time for honesty about where the system is failing. For me, this is a deeply personal debate. My remarkable, brave sister Margaret died from a glioblastoma. I cared for her for 19 months, taking her to Germany for many months because there was no treatment in the UK to offer her. I learned far more about brain tumours, the clinical trials system and the barriers to access to trials for patients than I would ever have wished to know.
It is from a place of experience that I make this speech, but it is about more people than just my sister. It is about Phil Woolas, the Member of Parliament for Oldham East and Saddleworth between 1997 and 2010 and a friend of many in the House today, who is currently in a hospice and could count his life in days and weeks, having been diagnosed with a glioblastoma. It is about the father-in-law of my hon. Friend the Member for Edinburgh South West (Dr Arthur), who inspired him to do the amazing work that he has been doing on the Rare Cancers Bill, which I understand will go to the other place for its Committee stage on Wednesday. It is about the Minister’s auntie, who I understand brought him up, and who also died of a glioblastoma. It is about Sophie Kinsella, author of the best-selling “Shopaholic” series of novels, whose funeral I attended over at St Margaret’s a few weeks ago, and all those who saw her wonderful husband Henry and their five children follow her coffin. It is about Terry Long, who I met at his family’s fundraiser. He set up Liberty Flowers in Romford, raising thousands for glioblastoma research; he died just before Christmas. I would also like to dedicate this debate to Christine, who died of a glioblastoma on 20 January. She was the mother of a civil servant who is watching this debate, and who thanks all of us for discussing this matter tonight in the House in the belief that some progress may be made.
My speech is also about the thousands of people diagnosed each year for whom time is brutally short and options are limited. When someone is diagnosed with a glioblastoma in the UK, they are told to expect the “gold standard” of treatment, but in reality, that “gold standard” has barely changed for decades. It means surgery, radiotherapy and chemotherapy. It offers management for a short time, but no cure, and when it runs its course, patients are expected to accept the inevitable—to go home, and prepare to die. The reality is reflected in the outcomes. The UK now ranks 22nd out of 29 comparable countries for survival from brain cancer. That did not happen by accident. Outcomes like this are produced by systems—by priorities, structures and choices made over many years. The question before us is not whether we care. We all care. The question is whether the system as it is currently designed is capable of delivering something different.
The same institutions, structures and priorities have been in place for years, and we need to be honest about where responsibility sits. Is the current leadership of the National Institute for Health and Care Research going to make a difference for rare cancers, for brain tumours, if it has not done so already? Is the Medicines and Healthcare products Regulatory Agency going to? Is Cancer Research UK? These bodies have been in place for years, and yet, for glioblastoma, nothing meaningful has changed. The five-year survival rate has barely shifted. There are no routine, nationally available drug trials for patients at diagnosis. For most people, the pathway remains exactly as it is presented at diagnosis: surgery, radiotherapy, chemotherapy, then reoccurrence.
This is not due to a lack of talented clinicians. I have met some of the most brilliant, dedicated and innovative medical professionals through this journey, one of whom I call my closest friend. It is the result of something far more dangerous: a system that is content with the status quo and able to deliver the illusion of progress, and organisations that are not held to account. When strategies are published, when funds are ringfenced and institutions endure, there is a real risk that activity is mistaken for progress. We cannot afford to confuse motion with change.
Let me give one concrete example of what I mean. Cancer Research UK recently highlighted what it describes as a flagship clinical trial for glioblastoma, a major national effort intended to bring new treatments to patients. In an organisation of such scale and influence, it is held up as the clearest example of what the system can offer patients. It is mentioned on page 77 of the national cancer plan. So far, however, only 13 patients have been recruited to that trial since 2024. This is an organisation that spent £715 million in 2023-24, and committed £419 million to cancer research. That is not a criticism of the trial, or of the clinicians delivering it—I sincerely hope that it delivers real benefit for those enrolled—but it is a criticism of how little the system has to offer people facing a diagnosis that amounts to a death sentence. To patients, this does not feel like progress; it feels like a system that has little to offer when it matters most.
There is something else that we need to be honest about. I know that many Members on both sides of the House who have fought for change in our medical system will recognise this: the system feels like a club, and if you are not already part of that club, you are positively excluded. Too often, the largest and most established institutions set the pace, define the terms, and face no real consequences when progress is slow. New ideas, new approaches and new entrants face procedural barriers at every stage. Innovation is talked about constantly, but is structurally discouraged.
That brings me to my own experience. Many Members of this House will know that, against the odds, a glioblastoma drug trial is now under way, in memory of my sister. Patients have been recruited, and although it remains at an early stage, we are encouraged by what we are seeing. But the road to starting this trial is an indictment of how the system treats rare cancers. The trial did not happen because the system was built to support rare cancer trials; it happened because an extraordinary number of obstacles were overcome by a small number of people, who were driven by grief and a refusal to take no for an answer. It required the backing of an exceptional clinician, who is based in a major London teaching hospital and supported by a leading university. It required a group of friends to campaign relentlessly and to raise more than £1 million in two years by selling teas, running marathons and organising fundraisers. And it required the direct engagement of the Secretary of State for Health and Social Care, who was willing to listen and to help us get the trial over the line.
Even with all that in place, barriers were still put in our way, so we must ask ourselves an uncomfortable question: if it takes that level of access, funding and political intervention simply to begin a single trial, who else can realistically hope to do the same, and what does that say about a system that talks about innovation but is not structured to support it? The experience raises a simple question: what does the system count as progress? If something truly matters, we measure it, yet when it comes to rare cancers, there are no clear targets for clinical trials, no meaningful benchmarks for progress and no real accountability when nothing happens.
The absence of targets tells us something important about priorities. If we are serious about improving outcomes for rare cancers, the standard is clear: we should be able to say how many clinical trials we expect to see, how many patients will be recruited and who is responsible for delivering. Such targets create urgency. Without them, rare cancers will continue to be left behind, and without clear, measurable standards for both the number of trials and the number of brain tumour patients entering them, we have no way of knowing whether access is actually improving.
I note the Government’s recent announcement on greater access to breakthrough trials for rare cancers patients, including improved routes into trials through the NHS app. Any step that genuinely expands opportunity for patients is welcome, but access only matters if there is something to access. For many people with rare cancers, and particularly those with glioblastoma, the problem is not finding the right route into a trial; it is that there are so few trials to enter. An app cannot direct patients to options that do not exist. Until we address the shortage of clinical trials, improvements in navigation risk becoming improvements in presentation, not in reality.
Much of the focus remains on the development of entirely new drugs. Of course, new science matters. In the hierarchy of research, the prestige rests with foundational research; it does not rest with repurposing drugs that already exist. Countless existing drugs that are already licensed, and which are already curing or controlling other cancers, could be tested for rare cancers, including brain tumours.
The hon. Lady is making a very powerful speech, and I pay tribute to her for all her efforts in this area. I have a dear friend who was diagnosed with glioblastoma last summer, who has been through surgery and radiotherapy, and who is now in a clinical trial at the Royal Marsden hospital—I am not sure if it is the trial to which the hon. Lady refers. May I ask her about a different drug, vorasidenib, which is licensed in the UK for low-grade gliomas? Two residents in my constituency, who are in their 20s, desperately need this drug. The National Institute for Health and Care Excellence is still considering whether it should be available on the NHS. Will the hon. Lady join me in urging the Minister to engage with NHS England and NICE to make sure that Servier makes the drug available, so that these young patients can continue to live their lives?
Together with a number of Members here, I met representatives of Servier, and people are now in receipt of vorasidenib. I would be happy to talk to the hon. Lady about how we went about that.
On its own, foundational research is not enough for the people who will be diagnosed with glioblastoma this year, next year or in the next decade. There are existing drugs that we can use, but the system provides little incentive to repurpose them for small patient populations, and there is little prestige in doing so. This is, at heart, a market failure. There are only two routes to more trials. One is the public and charitable route, which requires a real change in priorities and funding, and a pivot towards trying repurposed drugs. The other is the private sector, which will not deliver for rare cancers without intervention. If we want commercial trials for rare cancers, we must be honest about the tools available to us. Either we require pharmaceutical companies to test major cancer drugs on rare cancers, or we incentivise them to do so. There is no third way—and that is painful for a Blairite like me to say.
I hope that the national cancer plan will signal real change. Without our Secretary of State for Health and Social Care, and without the cancer Minister, my hon. Friend the Member for West Lancashire (Ashley Dalton), there would be no rare cancer chapter in the national plan. However, if the current system carries on, we will be having this debate forever, without progress, and our loved ones will continue to die in shocking circumstances. That is why this debate matters, and why a shake-up is not radical, but long overdue.
Charlie Maynard (Witney) (LD)
I thank the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh) for securing this really important debate. She has been excellent in driving forward this issue, and is so determined. She demonstrates how to go after an issue and pursue it relentlessly. That is great, but ultimately, as she points out, words are pointless. We have a real problem here, and our loved ones are being taken down far too effectively.
My sister Georgie is alive, and I am very grateful for that. She was diagnosed with GBM two and three quarter years ago, and has had surgery, chemo and radio. The survival rates are not good. I resent the fact that we always have to churn out our own stories in this Chamber; that, it seems, is what counts. Yes, I am going to churn out my own story, but it is irritating that I have to. She has been brave as hell and utterly determined, and is up there with the hon. Member for Mitcham and Morden. Like her, Georgie takes no prisoners. She has gathered people to her cause and has never taken no for an answer. That is obviously to her credit, but more importantly, it has made a difference to this debate. Well done, Georgie.
I also give a shout-out to the hon. Member for Edinburgh South West (Dr Arthur), whose Rare Cancers Bill has made a real difference, and to Labour Front Benchers. I know that I am on the Opposition Benches, but I do not really care, because this issue is too important for us to mess around. I do not know about the Secretary of State, but I think he is interested. I do know about the Minister for cancer, who has her own story, and who stood up in front of a room of angry people. Those of us affected by brain cancer do anger quite effectively, and she has withheld it, despite having her own cross to bear. She has worked extremely hard in this area, and I am very grateful to her for that.
I am not going to rehash all the points that the hon. Member for Mitcham and Morden made so well, but we obviously have some very bad issues. Pinned in front of me in my office is a chart, with arrows going from left to right, which basically shows how survival rates for different cancers have changed over the last 40 years. Up at the top, there are testicular cancer and thyroid cancer, and down at the bottom left, with virtually no arrows, are pancreatic, brain, oesophagus and a number of other cancers. People do not believe that they will be able to change that situation; they are not spending any money on them, because they are really difficult. There is no point pretending that these cancers are not really difficult, and brain cancer is particularly difficult because of the blood-brain barrier. The body does everything it can to stop things getting into the brain, which is mostly good for us, but when it comes to treating a brain tumour, it is bad for us.
I am grateful for the national cancer plan, but we need more, and we should be taking steps to deal with that issue. The plan says:
“Some rare cancers, such as brain and pancreatic cancer, have stubbornly low survival rates—and few treatment or diagnostic breakthroughs. We need new diagnostic tools, research into biomarkers, and targeted therapies to achieve any major changes to survival.”
What we need on the back of the plan is a comprehensive, actionable strategy, with specific, measurable goals and targets, each with clear deadlines, so that we can ensure accountability in critical areas such as workforce recruitment and retention, infrastructure development, and incentives for pharmaceutical companies to develop drugs for cancers on which so little progress has been made. I get that the Minister has just published a plan, but I look to him to take this further and set out as concrete a set of goals as possible, with a clear timeline.
I will go through a few headings. On participation and research, the regulatory landscape is too restrictive. It often pushes families to seek treatment abroad, where clinicians have greater freedom to investigate novel therapies. A lack of accessible, up-to-date information is contributing to missed opportunities to partake in research. Although some registries exist, such as the National Institute for Health and Care Research’s “Be Part of Research”, they are often difficult to navigate—there are over 120 types of brain tumour to search for—and they quickly become outdated. The cancer plan states:
“We will make increasing research into rare cancers a priority for DHSC”—
the Department of Health and Social Care—
“and NIHR (with the support and oversight of our new national lead for rare cancers research).”
I would welcome the Minister providing further details on how he and his team plan to effect that.
Bobby Dean (Carshalton and Wallington) (LD)
My hon. Friend is talking about the importance of research and the low survival rates. This is, of course, a global problem and a global battle, but Britain has a unique opportunity to lead on this. Just last week, a £1 billion project was approved at the London Cancer Hub, centring around the Institute of Cancer Research and the Royal Marsden, two world-leading operators that want to expand this. Can he talk a little bit about how Britain has the opportunity to lead the world in discovering solutions to rare blood cancers?
Charlie Maynard
I thank my hon. Friend for that excellent intervention. I am going to talk out of two sides of my face here, because on the one side, the UK has a lot going for it, but on the other, it does not. Since Brexit, clinical trials in the UK are down 60%, which is really bad news. That is just business logic talking. Businesses say, “Why would I do my trial in the UK, when the market there is six times smaller than the EU’s? I’ll do it in the EU.” We are living this, and some of us are dying as a result. However, we just plough on, saying, “Never mind. That’s a bit of a mistake, but there we go.” It would be a delight to find a way through that, and to get our clinical trials up and running, exactly as my hon. Friend says. I do not have the answer to that one, apart from the obvious; I am really looking for that.
I come to whole genomic sequencing. The Minister understands the issue better than me; I remember him mentioning it when I was having a coffee with him just after I joined the House. I really like what the team are doing, so well done to them. However, brain cancer patients lack the legal right to request whole genomic sequencing of their tumours. Instead, healthcare decisions on genomic testing are made solely by clinicians. As a result, many patients are systematically excluded from genomic testing, which significantly limits opportunities for tailored treatment options, and potentially affects their prognosis. The Government really need to rectify this injustice. We are after whole genomic sequencing for everybody who has brain cancer.
Vaccine programmes do exist, and it is now time—I do not often do this—for me to be polite about the Conservative Government. They launched an ambitious initiative aimed at improving outcomes for all cancer patients: the NHS cancer vaccine launch pad, which is a great achievement. As the Minister has said, it is
“speeding up access to clinical trials for cancer vaccines and immunotherapies”.
However, brain cancer is not included on that platform, despite ongoing efforts to expand its scope to cover this disease. Furthermore, it remains unclear whether the pharmaceutical industry is fully aware of the platform. My question is: why are brain cancer patients still left out of this programme?
On workforce and infrastructure, the key to achieving the Government’s cancer plan is encouraging multidisciplinary teamwork among oncologists, neurosurgeons, artificial intelligence professionals, imaging experts and immunologists. The Government need to clarify how many—I am looking for numbers—new research, fellowship and training positions will be introduced across neuro-oncology, neurosurgery, neuropathology and radiography. What are the plans for setting up laboratories and trial facilities at major centres, and when are they expected to be up and running?
On tumour tissue, we have a real mess, and I am looking to the Minister for help in sorting this out, because it is a real thicket of legal and medical complexity. Tumour tissue excised from the brain really matters, but how is it stored, what consents are used, and what control does the patient have over it, not only when they are alive, but after their death? What are the rules around tumour tissue, because we have a whole load of tumour tissue around the UK that is locked down and not accessible for research? I think many of the families would be absolutely delighted if that tumour tissue was used for research. I ask the Minister to have a look at that. What I am really asking is for the Secretary of State or the Minister to convene a series of meetings with all the key parties—the Human Tissue Authority, the Medicines and Healthcare products Regulatory Agency, the NHS and anybody else he thinks needs to be in the room—to work through that issue.
We have made great progress on organ donation; the law changed a few years ago, and consent is now given by default. We have good laws on what happens to egg and sperm tissue, so can we try to get our laws for cancer tumour tissue up to date? I am wrapping up. Will the Minister give a commitment to improving public and patient awareness of consent, including for tissue use in research and treatments; ensure that clear, consistent national messaging is developed with experts, patients and carers about how consent works in cancer care; and ensure that there is support for the public giving advance, informed digital consent, rather than doing so at moments of crisis?
Paul Davies (Colne Valley) (Lab)
Each year, around 13,000 people in the UK are diagnosed with a primary brain tumour, including 900 children and young people. Despite that scale, progress in survival rates has lagged behind other cancers. Just 13% of adults survive five years after a high grade diagnosis, and brain tumours remain the leading cancer killer for children and adults under 40.
I recently spoke with one of my constituents in Colne Valley whose husband was diagnosed with two brain tumours earlier this year. He now faces a long period of recovery to relearn many of the day-to-day functions that most of us take for granted. His courage and their campaign highlight the urgent need for renewed investment in brain tumour research, treatment and care, so that everyone affected has the best chance at life.
Brain tumour research currently receives just 1% of the total UK cancer research funding. I therefore welcome the Government’s national cancer plan as a vital step forward, particularly the £13.7 million investment in the NIHR Brain Tumour Research Consortium, which will accelerate much-needed innovation. I am also encouraged by the commitment to implement the provisions of the Rare Cancers Bill, which will expand the access to clinical trials.
Brain tumour patients must fully benefit from these measures. They face the lowest clinical trial recruitment rates of any cancer type, with the Brain Tumour Charity reporting that just 12% of patients have taken part. Too often, it is the distance from specialist cancer centres that stands in the way. Investment in research must therefore stand hand in hand with improved access, because postcode should never determine the support patients receive.
Palliative care, too, must be integral to our strategy. I have seen first-hand, through the remarkable work of the hospices serving my constituents, the difference it can make. By helping patients manage physical and emotional side-effects, supporting physical activity where possible, and caring for families and loved ones who are also affected, palliative care can offer life-extending support for those with brain tumours.
I echo the calls for a renewed effort to tackle the devastatingly low survival rates for brain tumours. Through greater investment in research, better access to innovative treatments and stronger support for those living with the disease, we can give every person facing a brain tumour the best possible chance—the same chance I had when I was diagnosed with colon cancer, which was curable through the appropriate treatment I received by some amazing clinicians.
Susan Murray (Mid Dunbartonshire) (LD)
I thank the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh) and my hon. Friend the Member for Witney (Charlie Maynard) for securing this important debate. I am here speaking tonight on behalf of my friend George, who is now in his eighties and still fundraising for research into brain tumours in the name of his son, David, who he lost far too soon.
Brain tumours remain one of the clearest examples of a condition where outcomes have not improved quickly enough. They are the biggest cancer killer of people under 40 in the UK. Each year, more than 12,000 people are diagnosed with a brain tumour and only a quarter of adults with a primary brain cancer survive for five years after diagnosis.
That reality is compounded by late diagnosis. Studies have shown that around 45% of brain tumours are diagnosed in an emergency setting—far higher than for other cancers—meaning too many people start their treatment far later than they should. That is why I support calls for a national cancer plan to increase survival rates of those diagnosed with brain tumours.
We have national campaigns to spread information on bowel cancer and other types of cancer to raise awareness, and a campaign would allow people to spot the early signs of brain tumours, but awareness on its own is not enough, as we have been hearing. Earlier recognition has to be matched by specialist services that can respond quickly and consistently.
Health and social care are devolved, but brain tumour patients should not find that their chance of being offered a trial or the speed of a referral depends on the nation in which they live. I would therefore like to urge the Government to work with the Scottish Government and other devolved Administrations on a joint approach, with research supported properly across the UK and funding used as effectively as possible.
This is about improving outcomes and ensuring fair access. It requires co-operation between the UK Government, the devolved Administrations and research institutions. Research is essential to saving lives and it relies on the co-operation, shared strategy and consistent support for trials. A disjointed approach without co-ordination slows the innovation that is possible. That is a failure not just for researchers, but for patients and the families of those affected. A national strategy is needed to push for awareness to facilitate co-ordination and, most importantly, to save lives.
Dr Scott Arthur (Edinburgh South West) (Lab)
What an honour it is to follow my fellow Scot, the hon. Member for Mid Dunbartonshire (Susan Murray), on this topic. I thank my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) for the way she introduced this debate. I think she said she was guided by experience, but I know she is also guided by the love she has for her sister. I thank her for securing the debate. She highlighted a real inequality at the heart of this matter—if she does not mind me saying so—as her sister was able to access the best treatment in Germany. Some people are able to pay a bit more or to run a Crowdfunder when they are faced with a brain tumour or another type of rare cancer; really, though, we should all have access to the same excellent treatment here in the UK.
I will speak a little about my private Member’s Bill and a little about the treatment for people with brain tumours in Scotland. Every year, more than a thousand people in Scotland will be diagnosed with a brain tumour. That may not sound like a large number, but, as we have heard already, while survival rates for many other cancers have improved, the needle for brain tumours has barely moved at all. Only 15% of adults in Scotland diagnosed with a high-grade brain tumour will survive beyond five years.
I know the weight of those numbers personally. My father-in-law was fit, active and full of life at the time of his diagnosis. It turned out that he had glioblastoma—the most aggressive form of brain tumour. He went from being a healthy man who enjoyed spending time with his grandchildren to having less than six months to live. As we have heard, that sudden, brutal trajectory is a story shared by far too many families. I always say that my father-in-law was a very dignified man, but the condition did not respect that at all in the impact it had on him and my wife’s family.
My father-in-law inspired my private Member’s Bill, the Rare Cancers Bill, which we have heard about today. It starts Committee stage in the Lords on Wednesday—let us hope there are no amendments. I thank everyone who has helped me to get the Bill this far, particularly my hon. Friend the Member for Mitcham and Morden and her colleague Baroness Elliott, who is supporting us in the Lords very ably. I thank the Secretary of State for Health and Social Care for his support—my hon. Friend the Member for Mitcham and Morden arranged a meeting for us very early on. I also thank the Under-Secretaries of State for Health and Social Care, my hon. Friends the Members for West Lancashire (Ashley Dalton) and for Glasgow South West (Dr Ahmed), who is in the Chamber today and who has been a fantastic advocate from day one. Even the Opposition spokesperson, the hon. Member for Sleaford and North Hykeham (Dr Johnson), has been a fantastic supporter.
I have to add my thanks to the hon. Member for Wokingham (Clive Jones)—I was going to call him Mr Cancer, but that does not sound like a great title. He is passionate about this and is widely respected across the sector. Of course, I also thank the hon. Member for Witney (Charlie Maynard). I have met his sister many times; she is—if I could put it this way—a very forthright person. When I first met her, at a reception for a cancer charity, she said that she was driven not through self-interest, but because as a mother, she wanted to spend longer with her children and to see them grown up. Who can argue with that?
Lastly, I thank the many charities—more than 40—that have been supporting us. Of particular relevance to this debate is Brain Tumour Research and the Brain Tumour Charity. I also thank H/Advisors for the work it is doing in helping us to keep the campaign pointing in the right direction, which is not always easy, I have to say.
Over the past year, I have been moved by the courage of so many people I have met, including Georgie. Through meeting both patients and families and through broader engagement with charities, clinicians and survivors, I have learned that there is no single easy solution to the problem that we face.
I have been guilty of saying that nothing has been happening in the sector, but the reality is that a lot is happening—it just needs a push in the right direction, or, as some would say, a kick up the backside. I do not know if that is acceptable language, Madam Deputy Speaker. There are promising breakthroughs in development, particularly in genome testing and targeted therapies, and crucially there is now national momentum behind this. The newly announced national cancer plan allocates £13.7 million to the NIHR brain tumour research consortium; through this and other significant partnerships, we will accelerate the volume of high-quality, innovative brain tumour research taking place right across the UK. This is a promise that we all—including the Minister—have a duty to ensure is delivered. I hope that we debate this subject regularly and that we can be impressed at the progress our Government are making.
Importantly, the plan recognises a long-standing problem in cancer research: too much early-stage discovery science never makes it through to translational research that delivers real diagnostics and treatments for patients. The commitment to link discovery scientists with translational researchers, to connect research infrastructure and to co-fund the Cancer Research UK brain tumour centres of excellence is exactly the kind of approach that this field has needed for many years.
For Scotland to truly benefit from this progress, we must ensure that our systems are ready to plug in to this UK-wide effort. One of my constituents, Dr Faye Robertson, is a consultant clinical oncologist and honorary clinical senior lecturer at the University of Edinburgh. She is at the forefront of this fight as part of a team on a mission to deliver breakthrough treatments and pursue cures for thousands of patients and families facing devastating diagnoses each year.
Faye’s team’s spin-out company Trogenix has secured £70 million of new finance to expand, upscale and develop. That sounds like a lot of money, but I understand that £70 million is just a drop in the ocean if real progress is to be made. They are doing fantastic work. Pre-clinical studies have shown that the biotech company’s breakthrough Odysseus platform could kill cancerous brain cells and stimulate the immune system against the tumours, while leaving the surrounding healthy cells and tissues untouched. This massive investment will accelerate Trogenix’s lead programme in glioblastoma multiforme, including a move to clinical trials.
By chance, I was at a mosque just outside my constituency on Saturday evening welcoming children from Gaza into the UK and meeting some of the health workers who have been supporting them. Among them was a neurologist who knew about the Trogenix work, which, he said, has made breathtaking progress although there is still a long way to go. It is work like that which gives me hope.
I met Faye in my office. She is hugely impressive, a fantastic communicator and a real intellect—if she is listening I have probably embarrassed her. I trust her when she says:
“Whole-genome sequencing is changing the outlook for treatment of many cancers, unlocking the promises of precision treatment. Yet in Scotland, out patients are still waiting.”
This is not a political point; it is just a matter of fact.
I also spoke to Dr Sarah Kingdon, who is the Tessa Jowell neuro-oncology clinical fellow at the Beatson cancer centre in Glasgow and also at the Edinburgh cancer centre—these people always seem to have long titles—and she absolutely agreed that there is a real gap when it comes to Scotland being able to access treatment because of the lack of testing. The neurologist I met on Saturday said that he was sending samples way down to the south of England and would have to wait for those samples to return. It is completely unacceptable that we do not have ready access to this technology in Scotland.
While other parts of the UK are moving toward routine whole-genome sequencing, Scottish patients face what has been described as a “genomic gap”. We have the scientific expertise—that is beyond doubt—and we have world-class infrastructure in Edinburgh. What we lack is a consistent policy commitment to make genomic testing a standard part of care. Without genomic testing, clinicians are fighting in the dark.
We owe it to the families who have watched loved ones fade in a matter of months to ensure that Scotland is not just a place where research happens but one where research reaches the patient. The national cancer plan shows that momentum is building right across the UK, and I hope breakthroughs in brain tumour research will be with us soon. Let us ensure that Scotland is ready to be part of that future.
I thank my hon. Friend the Member for Mitcham and Morden again for opening this debate and for the leadership she is showing. Very briefly, I want to highlight three fantastic campaigns, and then I have one ask of the Minister. The first campaign is Brain Cancer Justice, which Georgie is a part of. It advocates increased funding, research and support for brain cancer patients and families who are impacted by this deadly disease. I am sure that all Members here give those involved in the campaign our full support—otherwise I think they might be in the wrong debating Chamber.
The second campaign is for Owain’s law, which aims to standardise the process for storing and using brain tumour tissues, as we heard from the hon. Member for Witney. Ellie, who runs the campaign, is a fantastic communicator—it is impossible to disagree with her, because she is so passionate. She held a reception last week with someone called Samantha—I cannot quite remember where in the north of England she was from. Like Ellie, she has lost her husband to a brain tumour. She is devastated because she still loves her husband and is bringing up their children. She was explaining her predicament to us, all the while clutching pictures of her husband. It is awful that women are coming into this place so desperate but still hanging on to the love that they have for their loved ones. We have to listen to these people and demand action.
The last campaign I want to mention is for Hugh’s law. This is a campaign for paid leave and financial support for parents of critically ill children. Brain tumours are one of the biggest cancer types for children, so it really applies to this debate. I pay tribute to Brentford football club, which has already accepted the actions of this campaign. It has not waited for the Government to encourage companies or make it mandatory; it has just got on and done it because it is the right thing to do. I hope that others follow.
I have one ask of the Minister. I met Cancer Research UK on Monday last week—a fantastic charity, despite the challenges it faces, which we heard about earlier. One of those challenges, its representatives explained to me, is that each year it spends £870,000 on visa costs to bring the best researchers into the UK to help in the fight against this awful condition and others. If life sciences are a key part of our economy, and if we want to tackle these cancers, perhaps colleagues elsewhere in Government might be encouraged to waive the visa costs for these fantastic researchers, and hopefully more will then follow them.
Clive Jones (Wokingham) (LD)
I thank the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh) and my hon. Friend the Member for Witney (Charlie Maynard) for securing this evening’s important debate. Brain cancer is a particularly nasty and lethal form of cancer, and one of the least improved cancers in terms of survival rates. Brain tumours are the biggest cancer killer of adults and children under 40 and are largely unpreventable. After years of Conservative neglect of cancer care, the Government’s recent national cancer plan takes steps to address the crisis in cancer care. That is definitely to be welcomed, but it is clear that brain cancer care still needs urgent attention.
A big cause of low brain cancer survival rates is slow diagnosis. In England, 45% of patients are diagnosed in an emergency setting—over two times the rate of all other cancers. Emergency diagnosis means that patients often face worse chances of survival and fewer treatment options, especially options that avoid harm. The Government must act to ensure that brain cancer is caught earlier to give patients a better chance of survival. That is why the Government must speed up the diagnostic pathway by improving GP access to diagnostic imaging and improve the patchy access to MRI and CT scans.
Even when a patient gets a diagnosis, many experience delays in starting treatment. In 2024, 75% of brain cancer patients at the Royal Berkshire hospital near my constituency began treatment within 62 days of an urgent referral. That is below the standard expected proportion of 85%. Even more shocking is that, in 2023, 25% of brain cancer patients at the Royal Berks waited longer than 124 days to begin treatment after an urgent referral. That is just not good enough, which is why my colleagues, and many others in the House, are calling on the Government to introduce a guarantee for 100% of patients to start treatment for cancer within 62 days of an urgent referral. The Government must start to listen to the people who are calling for that.
A key step towards this aim is improving access to effective treatment. In the Buckinghamshire, Oxfordshire and Berkshire West integrated care board, which covers Wokingham, just 30% of cancer patients receive radiotherapy treatment within the 62-day treatment standard. This means that many brain cancer patients in Wokingham are missing out on the effective and timely treatment that would drastically improve their survival outcomes. To help address this, the Government need to replace ageing radiotherapy machines as soon as possible and invest in new ones, so that no one is denied access to treatment or has to travel far from home.
There is also a serious issue with equal access to new advanced treatments for brain cancer. Personalised immunotherapy vaccines have proven to be an effective treatment for brain cancer. This treatment, as well as advanced diagnostics and research, requires brain tissue from a patient to be flash-frozen to preserve DNA and RNA. It is then used to develop rounds of an immunotherapy vaccine. Due to a lack of nationwide regulations and practices on brain tissue freezing, however, there is a shameful inequality in brain cancer care. Sadly, the Royal Berkshire hospital and Frimley hospital, both used by my constituents, do not have the capability to flash-freeze or store brain tissue. As a result, many in Wokingham and across Berkshire cannot access advanced technologies such as personalised immunotherapy treatment and the more accurate genome sequencing that are key to attacking the cancer effectively.
This is why the Government must ensure equal access to high-quality tissue storage pathways across the country. It is not right that where someone lives affects the treatment they get, and thus their chances of survival. These steps to speed up diagnosis and improve treatment, along with investment in staff and research, will start to improve survival rates for the 12,700 people diagnosed with a brain tumour every year in the UK. Lastly, much has been mentioned about clinical trials in this debate. They are needed desperately, and it is my hope that Ministers will make this their personal priority in their discussions with drug companies in the next few months, and that we will see some real progress, with many more clinical trials starting in the next few years.
I thank my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) yet again for leading these debates. Just so that people know, her sister was a friend of mine. She was a Labour party organiser who rose in the ranks and over the years supported me in my various general election campaigns. She was very supportive but, at the same time, quite terrifying for anyone politically stepping out of line. She was an absolutely wonderful woman. The reason I intervene in these debates is because I am inspired by hon. Friend, who I call a dear friend.
In my constituency, I have a Mr and Mrs Atwal, who lost their daughter tragically and who every year undertake —with the Milan Asian ladies group and Councillor Kuldeep Lakhmana, who organise it—a sort of mini-mela to raise funds. I pay tribute to them and I want to thank them sincerely for not putting my Hindi singing or my bhangra dancing on social media.
There are two small points I want to make. The first follows on from the speech by the hon. Member for Wokingham (Clive Jones). The issue about access to scanning is absolutely critical. One of the issues that we have found is that there is not just a postcode lottery but a lack of awareness among some GPs about the national guidance. I know that GPs are incredibly busy, but we need to do something to raise awareness about that.
I chair a group of unpaid carers—we had a meeting this afternoon—and the second issue for me is the need for an acknowledgment in Government that if someone becomes a carer, perhaps over a long period of time, and usually with children survivors, they are almost certain to come across living in poverty. We need to look at how we support carers overall, including on the additional burden they face. My hon. Friend the Member for Mitcham and Morden explained in the previous debate the transport needs she had and the way she was having to pay for accommodation for her sister when she was being treated. That is the same for so many other people—they cannot bear the costs. The briefing from the Brain Tumour Charity said that the total financial burden for those seeking to care was something like £78 million a year. The ongoing costs are incredibly significant.
For many of the carers in the group I chair—they care for a whole range of conditions—of course the Government have assisted them greatly in raising the income they can arrange through employment themselves, but there are issues with flexible employment. My hon. Friend the Member for Edinburgh South West (Dr Arthur) raised that. There is not yet adequate acknowledgment of the need for flexible employment to enable people to earn a level of income that will help them survive. The issue, for those who literally cannot take on employment because of the hours they have to care, is that the level of carer’s allowance is abysmal.
There is a recent report by the Institute for Public Policy Research, and further reports are coming out from the University of Sheffield, which is doing a lot of work on this. Somehow, we have to come to terms with the fact that we will have to raise the level of carer’s allowance. It needs to be related at least to the minimum wage. Then, on that basis, we may be able to help some of these carers cope with the work they are undertaking for their loved ones, but also ensure that they are not living in poverty, because so many of them are at the moment.
We all supported the cancer strategy, and there is overwhelming support in the House to get on with the job, but looking at some of these fine details could transform people’s lives and how they are dealing with the situation at the moment. Part of it is about advocacy. What came out of my meeting today—this will sound a bit harsh—was that in the carers’ dealings with the various agencies, including the Department for Work and Pensions, they reported almost unanimously a lack of empathy in the way they are dealt with. If we can transform the cancer strategy to ensure that we embed that understanding and empathy, to understand what people are going through, and that they should not have to risk living in poverty and the whole family being impacted because of the financial consequences of the care they will have to undertake, we could transform the whole atmosphere around carers and the role they provide.
We have produced figures for the £180 billion that carers save the country overall through the unpaid care they do, but we never then acknowledge that in the actions we take. In this coming period, it is the 50th anniversary of the introduction of the first carer’s allowance—it was called invalid care allowance back then. This is the opportunity to address that issue because for many of those people who are caring for people with these conditions, particularly children, it desperately needs addressing.
Alex Brewer (North East Hampshire) (LD)
I thank the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh) and my hon. Friend the Member for Witney (Charlie Maynard) for bringing this important debate to the House.
I want to talk briefly about two things. First, I want to acknowledge and put on the record the bravery of my very close, lifelong friend, Karin Buschenfeld. She, like 45% of those diagnosed with a brain tumour, received that diagnosis in A&E in a very haphazard manner last month—that is double the rate for other cancers. She and her family are now adjusting to a very difficult new reality.
The other reason for my speaking today is to celebrate the amazing work of the Brain Tumour Charity. Founded and still based in my constituency of North East Hampshire, it was originally called the Samantha Dickson Research Trust, founded by Angela and Neil Dickson in memory of their daughter who died aged just 16 in 1996. The charity now supports thousands of people all across the country, including my friend. It also funds research, and the founders raised with me the unspent funding that languishes while survival rates remain stubbornly low. I call on the Minister to ensure that the Government work with researchers so that the best-quality research can help to change outcomes for future generations.
Peter Prinsley (Bury St Edmunds and Stowmarket) (Lab)
It is an honour to speak in this debate. I thank my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) and the hon. Member for Witney (Charlie Maynard) for securing it. We have heard many fine and very heartfelt speeches this evening, particularly those recounting personal stories about Members’ families.
Our new cancer strategy was announced last week. Sadly, political events of the past few days have somewhat submerged its importance, but we should be talking about it, as it is much the most important political development as far as I am concerned. We have seen little progress in brain tumour care—that is the truth of the matter. Those tumours are devastating; they rob victims of years of life, and wreck families. I have seen such patients over the years, and I can say that diagnosis may be very difficult, even with the help of hindsight.
An average general practitioner will see a new brain tumour once every seven years, but they will see thousands of patients in that time, so it is not surprising that the tumours are difficult to diagnose. I hear that a patient with a brain tumour will often have visited their general practitioner five or six times before a diagnosis is made. We must do what we can to raise awareness. In ear, nose, and throat care—which, as Members may know, is my specialty—we see a condition called acoustic neuroma. It is a brain tumour on the nerves that lie between the ear and the brain—the balance nerves. Such tumours are rare, even in ear, nose and throat clinics. I would see only a handful of them each year. Sometimes they present with a little hearing loss in one ear, or with just a little ringing. Sometimes they present incidentally.
Some of the other brain tumours we see in the ENT world are very rare. One that sits in the roof of the nose —an olfactory neuroblastoma—is so rare that I probably saw fewer than six or seven cases throughout my career, yet it presents with a loss of sense of smell, which is a very common problem for people who come to see ear, nose and throat surgeons or general practitioners. We must not deceive ourselves that we are dealing with an easy condition, for this is a difficult one.
I believe that we must support research into these mysterious diseases. As I have said before in this Chamber, this country is desperately short of medical researchers and clinical academics. Many of our clinical academics are getting towards the end of their careers, and we are not doing enough to recruit new academics in the early part of theirs. I would like us to think about what policies we might develop to encourage that—this is a political problem. My hon. Friend the Member for Mitcham and Morden said that given we have made so little progress, we must be content with the status quo. I beg to differ; we are not content with the status quo, and that is why we are all here this evening to discuss this matter.
We know that this is a promising time for some areas of medical research. Genetic research, for instance, is now becoming very important. I am not sure that whole genome sequencing, if that were available for everybody, would solve the problem, but it is the way we are going. Before I came to this place, I was involved in research into a rare ear disease called cholesteatoma. We did genetic research on that—genome sequencing—and we were able to identify some of the genes that probably cause the condition, but that does not make it any easier for us to prevent it, for we cannot choose our genetic code.
The problem with brain tumours is that they are deep-seated and inaccessible. We cannot see them or feel them, which is why curative approaches are so elusive. We can debate this in the Chamber until the cows come home, but that debate will not bring the cure, so we must decide what politically we can do to help. I welcome the £32 million boost to brain cancer research, and our new approach to clinical trials. I thank my hon. Friend the Member for Edinburgh South West (Dr Arthur) for his Rare Cancers Bill, and I congratulate him on getting it to advance so far. Like me, he is a new Member of Parliament, and I am in awe that you have managed—
Peter Prinsley
Yes, I am in awe that my hon. Friend has managed to achieve so much; you see, Madam Deputy Speaker, I am a new Member of Parliament!
Let us encourage clinical trials, for as Lord Vallance has said:
“Clinical trials are the route by which promising research can be turned into treatments”,
which will save lives.
May I say what a pleasure it is to follow the hon. Member for Bury St Edmunds and Stowmarket (Peter Prinsley), and thank him for his knowledge of the subject matter, and the way that he portrays it with such empathy and understanding? I also thank the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh) who set the scene incredibly well, as she always does. She has that deep personal belief, with her sister—a journey that we have often heard about in this House, and we sympathise with her. I thank the hon. Member for Witney (Charlie Maynard) for his contribution, including for speaking about his sister. Finally, I thank the Backbench Business Committee for selecting this topic.
It is always a pleasure to see the Minister in his place. I wish him well, and we look forward to his response to the debate. In the short time that we have known him, he has shown an aptitude in responding to those of us who ask questions, which we appreciate. I look forward to how he can encourage us all at the end of the debate.
I would like to give a Northern Ireland perspective. I always try to do that, as it adds to the flavour of the debate, and gives an opinion from Northern Ireland where health is devolved but where the issues are the same; they do not stop at the Irish sea, at Hadrian’s wall or at Cardiff—they are everywhere in this great United Kingdom of Great Britain and Northern Ireland.
In Northern Ireland, 2,043 cases of malignant and non-invasive brain tumours were diagnosed between 2017 and 2021, averaging some 409 cases per year. At the end of 2021 there were 5,465 people living with a brain tumour, with diagnosis occurring between 1997 and 2021. That gives us an idea of the perspective and magnitude of brain cancer. During that period, some 53.2% of brain tumour cases were among women, which has been illustrated by the examples shared by those with personal knowledge of this issue. As we know, cancer is no respecter of colour, creed or class, and the increase in incidence means that so many more families are grieving or worried, and so much more must be done not only to support families who are going through cancer, but to carry out research and find a cure. Last week, I attended an event in the House on cancer, and I was encouraged when the lady I spoke to told me that 60% of people diagnosed now survive cancer. That is a wonderful figure, but unfortunately the numbers are not as good in relation to brain cancer.
Brain tumours are the biggest cancer killer of children and adults under 40. In the UK, some 16,000 people are diagnosed each year with a brain tumour and the incidence of brain tumours is significantly higher in Northern Ireland. Some of the figures in Northern Ireland and Wales are incredibly worrying, compared with England and Scotland. Brain tumour cases in Northern Ireland are projected to increase by some 36% by 2035, with glioblastoma being the most common and malignant adult brain tumour, accounting for some 70% of all new diagnoses. Given that projected increase by 2035, which is not too far away, what discussions will the Minister have with the relevant Minister, Mike Nesbitt, in Northern Ireland to ensure that we can combat this terrible disease together? That is the outcome that I seek from this debate.
GBM has the worst outcome for patients, as those tumours are resistant to therapy. Despite such treatments as surgery, radiotherapy and chemotherapy, unfortunately GBM tumours regrow, leading to patient relapse and death after 15 months, which is incredibly worrying. Although the picture is dark, with sadness there is always hope. Brain tumour survival rates in Northern Ireland show that for malignant cases there was a one-year survival rate of 49.9% between 2017 and 2021—a significant increase from 37.4% between 1997 and 2001, which is really good news. Non-invasive tumour survival is high, with 88.3% of people surviving for five years.
There is much work being done in Northern Ireland to combat the darkness and bring light, such as through rapid diagnosis. This major project, launched in late 2025, uses rapid nanopore sequencing to reduce brain tumour diagnosis times from weeks to just hours. The technology reads tumour DNA almost immediately, helping clinicians to choose treatments faster. It is one of the incredible advances that have been made in cancer diagnosis; we are responding better than we have in the past.
While not a cure in itself, this research is giving people more time and a choice. Researchers have also identified existing FDA-approved drugs that could potentially be repurposed to treat brain tumours, specifically targeting how genes change as cancer progresses. All these steps bring forward something that every cancer sufferer and their loved ones need: hope.
May I plug, as I always do, Queen’s University, Belfast, and its wonderful work at the forefront of cancer diagnosis and cures? It gives me great pleasure to mention Queen’s University, because it shows that Northern Ireland is actively engaged in trying to find the cure. It has developed partnerships with big business, has students from all over the world and is always trying to find the cure. The adverts on television and elsewhere always encourage people to donate to cancer research so that the ultimate cure can be found. It will be a great day when that ultimate cure is found, and Queen’s University is leading the way.
Funding for cancer research based at Queen’s University is bringing a dividend. We can and must allow the university to do more research and development to find the ultimate cure—the cure for cancer. More funding means more work, which means more breakthroughs and more hope, and I think we can all agree that this House and this great nation of the United Kingdom of Great Britain and Northern Ireland will certainly do better with the light of more hope.
I call the Liberal Democrat spokesperson.
Helen Maguire (Epsom and Ewell) (LD)
I congratulate my hon. Friend the Member for Witney (Charlie Maynard) and the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh) on securing this really important debate in the Chamber, and I thank them for campaigning so tirelessly on this issue. I know how closely it affects families, including the family of my hon. Friend the Member for Witney. I was pleased to work with Georgie and Brain Cancer Justice on a letter to the Minister for public health and prevention, the hon. Member for West Lancashire (Ashley Dalton), regarding brain cancer vaccination trials before Christmas.
For brain cancer patients in the UK, no vaccine trials are running. The national cancer plan, published last week, committed to delivering up to 10,000 cancer vaccines. The ambition is that this kind of treatment will be more widely available by 2035. However, for many, that will be too late. Around 35 families every single day hear the news that a loved one has been diagnosed with a primary brain tumour, and many see that as a life sentence.
I have met Moderna, a leading company in developing cancer vaccines. I asked if it would give University College London a cancer vaccine for free for a trial on glioblastoma brain tumours, but it refused. Its excuse was that it could not make enough of the drug for 16 people. This is the rub: commercial companies do not get involved because there simply is not enough money in it, unless the Government intervene.
Helen Maguire
The hon. Lady brilliantly describes the real nub of the problem.
One of my constituents got in touch to tell me that in the space of a few months, four people that she knew received a brain tumour diagnosis. With symptoms ranging from seizures to changes in behaviour, the diagnosis process for brain tumours can be dramatic, lengthy and hard fought. That is why we urgently need improvements in diagnosis. The national cancer plan aims to make great strides in speeding up diagnosis, but I was disappointed that the Government did not take up the Liberal Democrats’ calls for 8,000 more GPs, to ensure that everyone can get seen quickly and be referred for treatment.
Once a referral is successful, the brain tumour should be treated. To see delays because of equipment shortages is a disgrace. The Government have pledged funding for 28 new radiotherapy machines, which is a step in the right direction, but the Liberal Democrats have long called for 200 new, fully staffed machines, so that we can end radiotherapy deserts and stop delays to vital treatment. Will the Minister set out when we can expect funding for more machines?
Brain cancer has a more complex element; it does not occur in stages like other cancers, but is defined by grades. The grading system can also differ, depending on the type of brain tumour that the patient has. The national cancer plan has looked to offer some relief to patients by giving a commitment that a clinical nurse specialist or other named lead will support them through diagnosis and treatment to hopefully make the path clearer. I look forward to seeing how the Government intend to support this ambition by providing enough staff through the 10-year workforce plan. While we are waiting for that plan, will the Minister give some clarity on how he plans to implement the commitment to providing 5,000 learning and training opportunities per year for the first three years of the plan for people in cancer-critical roles?
It is important that I mention benign brain tumours. Just because they are not cancerous, it does not mean that people do not experience a life-changing impact from being diagnosed with them. Those living with benign brain tumours must also receive the right treatment, care and lifelong support.
I really hope that we are at a turning point in cancer care, especially for brain tumours, which kill more children and adults under the age of 40 than any other cancer. I am pleased to see many organisations, including Brain Tumour Research, welcome the national cancer plan, especially the proposed access to clinical trials and increased research. There is a lot of ambition in the plan that must be accounted for, so will the Minister confirm that the annual summary of progress for the national cancer plan will be presented in the House every year for proper scrutiny?
I thank the hon. Members for Mitcham and Morden (Dame Siobhain McDonagh) and for Witney (Charlie Maynard) for bringing forward this debate on a very important subject. The hon. Member for Mitcham and Morden talked about the people she had met who had experienced brain cancer and brain tumours. For me, this debate is about my grandfather, who sadly died of a brain tumour some years ago.
Some 12,000 people have a brain tumour diagnosed each year, and this debate is supposed to focus on how we improve the survival rates for this condition, which are very poor. It is the leading cause of cancer deaths among children and adults under 40. The five-year survival rate is poor and—unlike the rate for many other cancers over the last few years—has not really moved at all. How can we improve the survival rates for people with brain tumours? There are essentially three areas that we can look at: prevention, early diagnosis and better treatment.
On prevention, if we look on the NHS website to see how we can prevent a brain cancer or brain tumour, it talks about having a good diet and preventing obesity. These things are important, but not specific to brain cancer. It also talks about trying to avoid head injury, for example by wearing helmets. What about early diagnosis? Some people have genetic conditions, such as neurofibromatosis, Li–Fraumeni syndrome, tuberous sclerosis and Von Hippel-Lindau syndrome, that make them genetically predisposed to having tumours in their central nervous system. Those individuals can receive regular screening, which can help identify these tumours at a much earlier stage, but what about people who do not have such conditions?
I apologise, Madam Deputy Speaker, for intervening despite not being here for the beginning of the debate. My hon. Friend will know that I chair the all-party parliamentary group for acquired brain injury, and I am also president of the Lincolnshire Brain Tumour Support Group—she is right about the connection between the two. Does she think it would be advisable for those who have suffered a brain injury to be screened routinely, given the correlation between an earlier brain injury and the later advent of cancer?
My right hon. Friend invites me to speak outside my area of expertise; I am afraid I do not know the answer to that.
I will, particularly if the hon. Gentleman has an answer for my right hon. Friend.
Peter Prinsley
I cannot understand how there can be a relationship between head injury and brain tumour. Repeated injury causes some neurological conditions, particularly for footballers, whom we see getting early dementia, but I do not see a connection between head injury and brain tumour. Does the shadow Minister?
It is certainly something that I have read about. I am happy to be corrected by the hon. Gentleman if he feels that my resources are incorrect, but that was certainly one of the suggestions for how to prevent these tumours. I do not think that prevention will necessarily be the major way in which we improve the survival rate. I also do not think that it will be early diagnosis, but I would like to finish talking about that. Regular screening for people with genetic disorders can really help to identify tumours early, and the second thing that can help is access to diagnostic tests. The Conservative Government introduced community diagnostic centres across the country, which increased the number of scanners available to those who needed a scan to identify whether they had a brain tumour. This Government have said that they will double the number of scanners available. Can the Minister comment on whether they are on track with that?
We need the workforce plan, so that we have the people to perform and interpret the scans. I do not know whether the Minister has had any tips on whether the workforce plan is imminent, but can he give us a date for when it is likely to be published? It has been delayed, but it is important. We have the cancer plan, but so much of it is dependent on the workforce plan. Thirdly, opticians have a role to play. Since a South Tees project pioneered in 2015, opticians have been able, during regular eye tests, to identify people who have signs of brain tumours, and to refer them, when necessary. Encouraging people to get regular eye tests may contribute to early diagnosis.
The fourth thing that can help with early diagnosis is symptom awareness—among both the general public and healthcare professionals. I want to talk about HeadSmart, a 2011 programme about the types of symptoms that could help identify a brain tumour. It had quite significant cut-through with both healthcare professionals and the public. It halved the time for a scan, and for diagnosis of children with brain tumours. It also improved the cognition of survivors, but it did not significantly improve the survival rate. While early diagnosis helps a bit, it is very difficult—particularly in children, who are quite neuroplastic, so symptoms appear quite late. The location and type of tumour are more important in the treatment and prognosis, and there are many different types. That makes this area of medicine extremely complicated, so I think the answer is that we need better treatments.
Treatments currently include steroids, chemotherapy, radiotherapy and surgery, but there are many others with promise. Convection-enhanced delivery enables chemotherapy to be delivered across the blood-brain barrier more effectively. Many hon. Members have talked about freezing, and last month there was a debate on the topic of freezing brain tumour samples; does the Minister have an update following that debate? His colleague, the Under-Secretary of State for Health and Social Care, the hon. Member for West Lancashire (Ashley Dalton), said that she would look at the detail and report back, so I hope that he will have an update for us this evening. Gene therapy has also shown a lot of promise, and there has been talk this evening about the trial in which an adeno-associated virus is used as a vector to seek out the glioblastoma cells and use the patient’s immune system to kill the tumour cells. That trial has promise; if it works, it could lead to real improvements in treatment.
Research will be key. BioNTech’s 2023 partnership promised that there would be 10,000 patients in cancer vaccine trials by 2030, but new innovators face barriers. This is a global fight; work is going on right across the globe, and we need to make the UK’s environment one that stimulates and supports research, so that British people can have the earliest possible access to the newest treatments. At the moment, the wider economic picture for research is not great, and we have seen some researchers pull out of investments in the UK. Taxation, national insurance, employment rules and the speed of adoption by the NHS are all factors that I hope the Minister will try to improve.
The hon. Members for Edinburgh South West (Dr Arthur) and for Strangford (Jim Shannon) talked about the devolved Administrations. Could the Minister comment on how he and his team are working with those Administrations to encourage research right across the United Kingdom? I also wanted to talk about rural areas, because it is all very well encouraging trials in the UK or England, but so many of those trials are in the centre of London, or in the other big cities; it is much more difficult for people living in rural areas, such as my constituents in Sleaford and North Hykeham, to access them. Could the Minister please update the House on how he is making it easier for research to occur in rural spots?
The hon. Member for Witney summed it up perfectly when he said that ambition is important, but actions, not words, are the key. We need specific, measurable targets, not just warm words—this Government have been very good at warm words on health, but much poorer on delivery. For the sake of the one in two people who will get cancer, and all their friends and loved ones, I hope that on this occasion, there is more action, not just words.
The Parliamentary Under-Secretary of State for Health and Social Care (Dr Zubir Ahmed)
I start by thanking my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh), and the hon. Members for Witney (Charlie Maynard) and for Kingswinford and South Staffordshire (Mike Wood) for supporting this important debate. I would like to take a few moments to acknowledge the contributions of all hon. Members across this House—from personal experience, I know how hard it is to talk about these issues when people close to your family are lost to brain tumours. They include my aunt, who was instrumental in my pursuing a career in medicine. She passed away in 1997, only four months after a diagnosis of glioblastoma.
The hon. Member for Witney asked about consent in relation to tumour tissue research, which is a really important and pertinent topic. I am very happy to go away and consult with the Human Tissue Authority regarding the facility we have at the moment, which is quite sizeable, for securing consent to research on tissue from living persons and deceased persons. As a transplant surgeon, I am relatively au fait with some of the consent issues that can arise in using tissue from deceased persons, and I am always very happy to encourage consideration of those issues wherever possible. The hon. Member rightly challenged us to improve our architecture for digital consent. We continue to do so through our “analogue to digital” platform, on which the 10-year health plan is based, not only for care but for research.
I thank my hon. Friend the Member for Colne Valley (Paul Davies) and the hon. Member for Mid Dunbartonshire (Susan Murray) for their thought-provoking contributions to this debate, as well as my hon. Friend the Member for Edinburgh South West (Dr Arthur), who talked so passionately about these issues. I thank him once again for bringing forward his private Member’s Bill, which will do so much to move the dial on research, not only on brain tumours but on rare cancers more generally. He had a specific ask about visa costs for talent coming from elsewhere in the world, and I assure him that we are looking seriously into these issues. Only today, I was chairing a session of the Life Sciences Council, where we talked about the global talent fund. That is pertinent to the discussions that my hon. Friend is having, and I am happy to put the council in touch with him to further those discussions regarding how we attract the brightest and the best to our country to advance the cause of life sciences generally, as well as the cause of researching rare cancers.
The hon. Member for Wokingham (Clive Jones) talked more specifically about referral targets. I can reassure him that we are totally committed as a Government to hitting those national standards on 62-day waits. He challenged us to go to 100%. I caution him that although 85% is possible, 100% is not, usually for clinical reasons. There may be genuine clinical reasons why patients cannot access treatment within 62 days in terms of planning and specialist access.
My right hon. Friend the Member for Hayes and Harlington (John McDonnell) talked about diagnostics. That issue is close to my heart, and I reassure him that through the continued opening of community diagnostic centres up and down the country and £2 billion of funding, I am determined to ensure that diagnostics is improved and available closer to home wherever possible.
The hon. Member for North East Hampshire (Alex Brewer) talked about her friend being diagnosed with a brain tumour in A&E. As someone who was a young casualty officer many years ago, that resonated strongly with me. The A&E department is the last place where any tumour should be diagnosed, but I remember it happening far too frequently as a young casualty officer. One litmus test of the success of our cancer plan will be that much fewer of those diagnoses will be undertaken in an unplanned fashion in A&Es up and down our country.
I am always grateful for the learned remarks of my hon. Friend the Member for Bury St Edmunds and Stowmarket (Peter Prinsley). I always feel like I learn so much from him. In fact, I learned so much tonight that I might add his contribution to my portfolio of continuing professional development when I submit myself back to the General Medical Council to extend my licence.
The hon. Member for Strangford (Jim Shannon) always raises thought-provoking issues about four-nation working. I assure him that I continually and frequently discuss many matters pertaining to the health of our four nations with the Minister of Health in Northern Ireland. I can also reassure him of our UK-wide commitment to the life sciences sector plan and life sciences project. On that note, it was my great pleasure to meet academics from Queen’s University Belfast in this place only a few months ago, where I reaffirmed my commitment as life sciences Minister to the life sciences sector plan being a true four-nation project. That of course includes Northern Ireland, and I know from my own academic interests that much expertise resides in Northern Ireland.
The hon. Member for Epsom and Ewell (Helen Maguire) talked about benign tumours not being forgotten, and she is absolutely right. Those of us from a medical background know that it is a spectrum between benign and malignant tumours. Many benign tumours can evolve into malignant tumours, and they must be captured by plans such as the national cancer plan. She challenged me about publishing regular outcomes from the national cancer plan, and I can certainly commit to that. Those can be scrutinised in the normal way by the Health and Social Care Committee.
The shadow Minister, the hon. Member for Sleaford and North Hykeham (Dr Johnson) talked about screening. She will know, as I do, that screening is important when it is evidence-based and where the benefits outweigh the harms. Screening is never harm-free, so it is important to ensure we are calculating these things based on expert evidence. Neither she nor I are experts in screening, so we always defer to the UK National Screening Committee and its deliberations and opinions on these matters.
The shadow Minister asked me about the workforce plan. I can assure her that that is in play and will be published shortly, in the spring or very early summer. She asked how that might interact with diagnostic capacity, and I can assure her that we are working at great speed to ramp up diagnostic capacity through the funding envelope that I mentioned. She will know that it is important, when we plan both for workforce and diagnostic capacity, to take account of AI moving at a rapid pace. We have already been able to eliminate one radiologist from breast cancer diagnoses, and it is entirely possible that we will be able to have a similar impact with technology on the rates of other cancers and, for example, lung cancer diagnostics. It is important that, as we work through the workforce plan, we take account of what the future will look like in that context.
When we came to the topic of the potential association between traumatic brain injury and brain tumours and my hon. Friend the Member for Bury St Edmunds and Stowmarket intervened on the hon. Member for Sleaford and North Hykeham, the medical man in me could not help himself. I looked at PubMed quickly to check whether there was indeed an association, and I picked out a paper that may be of interest to the medical people in this place. Following 24 years’ worth of data from Mass General Brigham hospital, with 75,000 patients on each arm looked at retrospectively, there would seem to be a mild association between severe traumatic brain injury and the diagnosis of malignant brain tumours.
As the Minister is now referring to my specialist subject, I thought that I had better intervene. Although I defer, of course, to the immense experience of the hon. Member for Bury St Edmunds and Stowmarket (Peter Prinsley) in these matters, I think that this is associated with lesions and scarring, and that is why, as the Minister said, there is a mild association. As the hon. Member said, there is a much more profound association with other neurological conditions, particularly dementia.
While I am on my feet, may I ask the Minister to address the issue of research? The hon. Member for Bury St Edmunds and Stowmarket is right: diagnostics are terribly difficult, but 1% of the expenditure on cancer research currently goes towards brain tumour research. Can we increase that?
Dr Ahmed
I am grateful to the right hon. Member for his remarks. At the risk of turning this into some sort of medical journal club—I will move on quite swiftly, Madam Deputy Speaker—let me point out that the association is based on retrospective data, and we all know that we have to be a little bit cautious with retrospective data. As for the question of research, I can assure the right hon. Member that we are committed to spending more of the £2 billion NIHR budget on rare cancer research, some of which is ringfenced.
The hon. Member for Sleaford and North Hykeham asked about rural areas. In the workforce plan, we are committed to ensuring—
May I take up the point about funding? I apologise for not having been here at the beginning of the debate, but I want to pay tribute to my two incredible constituents Khuram and Yasmin. Their daughter Amani was diagnosed with glioblastoma, and tragically passed away in February 2022 at just 23 years old. Amani’s parents devoted themselves to taking care of her 24/7 as the cancer progressed, but they had to fundraise £100,000. Does the Minister not agree that parents and others should be spending their time with their loved ones, not spending their time fundraising for experimental drugs?
Dr Ahmed
I thank my hon. Friend for all her advocacy on behalf of all her constituents, but particularly Amani’s family. This is a story with which I am very familiar, and I can reassure my hon. Friend that I am committed to ensuring that medical research is properly funded so that, indeed, it is not the duty of bereaved parents or parents to raise the money.
We all know that, while money is important, if the institutions that are given money do not spend it, we are all left frustrated and wondering what will happen. I have met cancer Ministers in both the last Conservative Government and this Government, all of whom have been well-intentioned and meaning to bring progress, but it requires intervention with those organisations to ensure that the money that is made available is spent.
Dr Ahmed
I am hearing my hon. Friend’s call to action loud and clear. I can report to her that—this is in addition to the other ongoing clinical trials in the area of brain tumour and glioma research—in October 2025, RECURRENT-GB opened for recruitment. This is a new UK multi-centre randomised controlled trial, supported by nearly £2 million of NIHR funding, which will explore, for instance, whether surgery can improve the quality of life for patients with glioblastoma when the glioblastoma comes back after treatment. I know that my hon. Friend will hold our feet to the fire when it comes to recruitment and the money being used appropriately, and I am delighted to continue working with her in that regard.
Since this Government took office, over 213,000 more people are getting a cancer diagnosis on time, over 36,000 more people are starting treatment on time, and rates of early diagnosis are hitting record highs. Despite these vital signs of recovery, we know that our NHS is still failing far too many cancer patients and their families, as Members from across the House have highlighted this evening. We know that brain tumours remain one of the hardest cancers to treat, and it remains a challenging and underserved area of research.
Last week, the Government published our national cancer plan. We now have a blueprint to shift the dial on rare and challenging cancers, underpinned by three key targets. First, we aim to save 330,000 more lives by 2035 by ensuring that three in every four people diagnosed in 2035 will be cancer-free or living well with cancer five years after diagnosis. Secondly, we will achieve the three cancer performance targets, which I mentioned earlier, by the end of March 2029. Finally, we will improve the quality of life for people living with cancer.
Rare and less common cancers are a priority for the Government, and this is the first ever cancer plan with a whole chapter dedicated to rare cancers. We aim to be in the top quartile of European countries for 14 rare cancers, including brain tumours, where we currently rank 22nd out of 24. We will pull every lever available to drive improvements for these cancer types. We know that one of the most effective ways to improve survival from cancer, including brain cancer, is to catch it and treat it early, so we have committed to reducing the number of rare cancers diagnosed in emergency settings, including brain tumours, which cannot be staged like other cancers and have therefore not been previously captured by early diagnosis measures.
Dr Arthur
This is about equality. There is a fantastic charity called The Eve Appeal, which is focused on gynaecological cancers. It makes the point that a disproportionate number of people with these cancers end up being diagnosed in A&E, by which time it is too late. Through a meeting I had with Blood Cancer UK, I know that ethnic minorities are much more likely to face a diagnosis in A&E than in a doctor’s surgery. This is something that we should do, not just because it is the right thing to do but because it is a matter of equality.
Dr Ahmed
I could not agree more with my hon. Friend, and that is why NIHR funding has been specifically allocated. One of the tests for a grant is the diversity of the population it will serve.
We recognise the challenges presented by brain tumours. By publishing regular performance data at a more granular level and adding diagnosis in emergency settings to our basket of early diagnosis metrics, we are committed to moving the dial on these issues. For all patients diagnosed with rare cancers, we will prioritise access to specialist treatment and multidisciplinary teams to ensure that they benefit from the best of evidence-based care. We will work with charities to support rare cancer patients, and to ensure that they have access to the right information to manage their cancer care. We wish to be held accountable on these commitments and to drive forward progress for rare cancer patients, and we will therefore appoint a national clinical lead for rare cancers, who will provide independent arbitration.
The actions I have listed make up just a small part of our plan. It will turn cancer, which is one of the country’s biggest killers, into a treatable chronic condition. We have developed our plans with patients, charities, families and clinicians, and have heard from many Members today. We are grateful for the continued campaigning on rare cancers and brain tumours.
The chapter on rare cancers says that a named individual at NIHR will be responsible for progress in rare cancers. If there is no progress, will they get the sack?
Dr Ahmed
Sacking people is above my pay grade, so I will revert to the Secretary of State’s opinion on that, but my hon. Friend can certainly be reassured that we will hold them accountable, just as she will hold me accountable. She might give me the sack at this rate, so I had better be careful.
We are grateful for the continued campaigning on rare cancers. We look forward to working further with partners to deliver improvements in outcomes for brain cancer patients, and we know that the improvements promised through this plan rely on good research.
That research has already begun, with over £25 million invested in the NIHR brain tumour research consortium, which aims to transform outcomes for adults and children —and their families—who are living with brain tumours, ultimately reducing the number of lives lost to cancer. Furthermore, we are partnering with Cancer Research UK to provide £3 million to co-fund the CRUK brain tumour centres of excellence. This will ensure that we accelerate the move from foundational research to delivering innovative treatments for patients. These investments have the potential to shift the dial and the UK’s position as a leading location for brain tumour treatment research.
As reaffirmed in the national cancer plan, this Government are proud to support the Rare Cancers Bill, introduced by my hon. Friend the Member for Edinburgh South West, which passed its Second Reading in the other place last month. I thank my hon. Friend the Member for Mitcham and Morden and other hon. Members for their support and their moving contributions to the debates on the Bill. This important legislation will make it easier for researchers to connect with patients living with rare cancers, including brain tumours; streamline recruitment into clinical trials; and ensure that our regulatory system delivers for patients. As set out in our 10-year health plan, we will ensure that the UK is a global leader in clinical research. This Bill will accelerate the clinical trials needed to deliver the most effective cutting-edge treatments and the highest-quality care for patients facing a rare cancer diagnosis. I look forward to seeing it progress towards Royal Assent.
I once again thank hon. Members for giving me the chance to set out our plans on rare cancers. I hope I have reassured them that we are determined to improve survival rates for patients, and ensuring that everyone has access to the highest-quality care and the highest-quality research. The national cancer plan embodies these ambitions and sets out how we will achieve them. Through our significant research investments and our support of the private Member’s Bill on rare cancers, in 2026 we will begin to shift the dial on outcomes for brain tumour patients.
I call Dame Siobhain McDonagh to wind up.
Madam Deputy Speaker, I think I have wound up enough people this evening, but I thank all Members, from all parties, who have spoken in tonight’s debate. It is my view that the contributions of Members of this House have brought about a real and material change in what is going on at the NIHR, Cancer Research UK and other organisations, because we are watching and speaking out. We need to do that, because if we do not, they will simply continue along the same path, and we cannot allow that to happen.
Question put and agreed to.
Resolved,
That this House notes that survival rates for brain tumours have seen little improvement in decades and that brain tumours remain the biggest cancer killer of children and adults under 40; expresses concern at the limited availability of clinical trials for brain tumour patients; calls on the Government to set out a clear plan to increase survival rates, including accelerating access to clinical trials and innovative therapies; further calls on the Government to support the expansion of tissue freezing and storage to enable research and the development of new treatments; and also calls on the Government to ensure the timely deployment of the research funding committed in 2018 through the National Institute for Health and Care Research for brain tumour research.