Brain Tumour Survival Rates

I 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 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.

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.

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?

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”.

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 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.

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 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.

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.