Brain Tumour Survival Rates

Siobhain McDonagh Excerpts

Monday 9th February 2026 Commons Chamber

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

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.

[Munira Wilson (Twickenham) (LD)]

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?

[Dame Siobhain McDonagh]

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.

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[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.

[Dame Siobhain McDonagh]

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?

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[Dame Siobhain McDonagh]

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 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.

[Dame Siobhain McDonagh]

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.

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[Dame Siobhain McDonagh]

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.