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 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 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.