Brain Tumour Survival Rates

Charlie Maynard Excerpts

Monday 9th February 2026 Commons Chamber

[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?