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I beg to move, That this House has considered e-petition 738881 relating to brain cancer research and treatment. It is a pleasure to serve under your chairmanship, Mrs Barker. I thank Sarah Bainbridge and the rest of Brain Cancer Justice for creating the petition that has led to this debate. Although it was established only last year, it has already built a remarkable campaign and secured support from more than 109,000 people for the petition—well done and thanks very much. The petition calls for increased funding to accelerate discoveries and clinical trials, improved access to whole-genome sequencing with personalised treatment and the protection of the right of patients to try innovative treatment options. It is not the first time that Parliament has debated this issue. Just over a decade ago, a petition calling for greater funding for brain tumour research received more than 120,000 signatures, which led to a Petitions Committee inquiry report.
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I am very glad that my hon. Friend has brought this debate to us. The petition to which he refers was in memory of the son of my constituent; his name was Stephen Realf, and sadly he died in 2014. The petition calls for increased funding to reach parity with the funding for leukaemia and breast cancer. Stephen’s father Peter is in the Chamber today. Would my hon. Friend care to comment on the importance of the work done by Stephen Realf’s sister Maria back then in raising the profile of this vital issue?
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I absolutely agree. I have spoken to Peter, and it was remarkable what they did then. The inquiry—there have not been many petition inquiries—was a result of the work they did, and it has certainly made sure that the subject has not gone away. That petition recognised that brain tumour patients have been failed “at every stage” of the research and funding process. As a result of that and the inquiry, some progress followed: a task and finish working group was established, and in 2018 the Government pledged £40 million for brain tumour research. However, by 2024 only £15 million of it had been delivered. Many further petitions have been brought forward by campaigners, but meaningful progress continues to stall.
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I thank my hon. Friend for the moving way in which he is opening today’s debate. It has been really heartbreaking to hear from my constituent Hayley about the battles that her granddaughter Lily has had to go through to try to find effective treatments for her brain tumour. The Brain Tumour Charity has highlighted that fewer than 40% of patients with brain tumours are informed about clinical trials. Does my hon. Friend agree with its recommendation that the Government need to reflect on how every eligible patient can be informed about, and ideally have access to, clinical trials to ensure that the widest possible range of treatment options is available?
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Absolutely. That is a key element of the work that needs to be done to help patients with this issue. I will refer to that later, but it is fundamental. We know that, without that research, nothing will improve and we will continue to see the terrible conditions and quality of life that people have to face.
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On the brain tumour research consortium, I understand that none of the moneys to which the hon. Gentleman refers have made it to Northern Ireland’s research facilities. Does he share my concern about the need to ensure that the money reaches the whole United Kingdom to benefit our collective research, including at Queen’s University Belfast, and find a cure for everyone in this great United Kingdom of Great Britain and Northern Ireland?
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I was not aware of that, but clearly it is unacceptable and makes no sense whatever. We really need to use our experience right across this nation. I absolutely agree with the hon. Gentleman. It is a fact that in the UK brain tumours remain the biggest cancer killer of children and of adults under the age of 40. Approximately 13,000 people are diagnosed each year. For those who are diagnosed with a high-grade brain tumour, the five-year survival rate remains just 12.9%.
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Alex Sobel Lab/Co-op
My constituent Emma has long been committed to achieving justice for people with brain cancer and has been writing to me about it ever since I became an MP. She has highlighted the survival rate of 12.9%. As we have already heard, research funding in this area is very low, at just 1% to 2% of overall cancer research funding. Does my hon. Friend agree that we need to increase the research funding to improve that five-year survival rate?
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Absolutely. I use the word again: it is fundamental. Without it, there is no real way forward. We will continue to repeat the same treatments that we have seen for many years. Those treatments are not fully effective, as we know, so we need research to develop new and innovative approaches. I have referred to some statistics, but we have to remember that behind every statistic is a family. Each family are pursuing every available treatment, and all too often they are turning to crowdfunding to travel overseas in search of a cure, because significant barriers continue to block progress here at home. Workforce shortages also limit access to care. Only 40% of patients have a clinical nurse specialist, and there is a 30% shortfall in consultant radiologists. Early-career researchers lack funding and support, which pushes talent away from this field. That is especially damaging because scientists from diverse disciplines are essential for the development of new treatments. System failures also prevent the limited available funding from reaching patients in a meaningful way. Whole-genome sequencing is not routinely available at diagnosis, and access to a clinical trial remains severely restricted.
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The Mount Vernon hospital in my constituency has a cancer centre, both for trials and for treatment. Does the hon. Gentleman agree that one of the key asks that we all have of Government is to improve the international join-up so that the people doing this research can tap into the expertise of the clinicians treating patients in other countries, who in turn can learn from the expertise in the UK? Too often, because these tumours are very rare, identifying effective treatments and effective numbers for trials can be difficult for one single hospital or clinical institution.
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The hon. Gentleman is absolutely correct. This work cannot be done by just one centre, either in this country or elsewhere in Europe or the world. It certainly makes sense to connect expertise more, both within our nation and with our partners, particularly in Europe but also across the US. As of May this year, only 15 active trials were available to brain tumour patients, compared with 54 for pancreatic cancer, which is another disease of unmet need.
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A constituent of mine, Daniel, passed away while he was part of the BRAIN-MATRIX study. Daniel’s tumour progressed from stage 2 to stage 4 before the pathway could properly inform his care. Does my hon. Friend agree that much more needs to be done, not only to improve primary care recognition and referral pathways for brain tumours, but to maximise access to clinical trials?
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Yes, I do. At the front end, we need to improve diagnosis. I have personal knowledge of that through my youngest daughter. Unfortunately, it took some time for one of her friends to be diagnosed with this awful disease, and he is now at a similar stage, where it is extremely difficult for him to receive the treatment he needs. Diagnosis is extremely important. Clinicians continue to raise concerns about the collection, storage and use of tumour tissue, despite the fact that it is vital to supporting research and innovation. Unfortunately, NHS trusts differ markedly in capacity and resources, creating a postcode lottery for diagnosis and advanced treatments. As we know, brain tumours are complex; there are more than 100 distinct types, nearly 40% of patients in England are diagnosed in emergency care, and the blood-brain barrier limits the effectiveness of medicines. Such challenges have led many to dismiss tackling brain cancer as “too difficult”. That is clearly still an obstacle. We have to break the view that brain cancer falls into that box. In my meetings with campaigners, patients and families, their frustration with that notion is unmistakable. They know, as we do, that with the right support these barriers can be overcome. The Government have recently announced welcome initiatives, including those in the Rare Cancers Act 2026, the national cancer plan and the brain tumour research consortium, supported by the £13.7 million to unite 48 hospitals, universities, cancer centres and charities in partnership with patients. However, that must be seen as just the first step. Much of this activity simply disburses the remainder of the existing funding pledged, and brain tumours still receive just 3.2% of national cancer research funding.
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I have been contacted by constituents on behalf of young adults and children who are fighting for access to treatment. I am afraid that this all became far too real for me this time last year, when a dear friend of mine was diagnosed with glioblastoma; they are now in palliative care, probably with only a short time to live. Does the hon. Gentleman agree that we need to boost Government funding into research? As he said, too many companies think that this is just too hard to do, so we need a Government initiative, in partnership with the amazing life sciences innovators in our universities up and down the country, as well as those in industry, to really crack this problem so that families do not face this devastation year after year.
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The simple answer is yes, I totally agree. The hon. Lady has summed it up perfectly. In 2023-24, charities provided 74% of all investment, which of course left just 26% coming from Government. There is a clear link between funding and survival. Investment enables more clinical trials, better patient recruitment and improved access to innovation. I therefore call on the Government to set out how much funding will be ringfenced, and to raise their contribution to between £45 million and £50 million by 2029 in line with the recommendations from Brain Tumour Research. At the same time, we must recognise that funding alone will not deliver the progress we urgently need. The wider research and innovation environment must be reformed so that discoveries progress more efficiently into clinical development and patient access. Discovery research is essential, yet many innovations still fail to cross the translational valley of death, where fragmented, high-risk and unsupported pathways cause breakthroughs to stall. Stronger collaboration between institutions is needed to accelerate early-stage research, and the Government should also clarify the role of UK Research and Innovation within the national cancer plan, given its central contribution to discovery science. In addition, health technology assessment reform is required so that appraisal bodies adopt fairer and more flexible cost-effectiveness thresholds for rare and less survivable cancers, including brain tumours. Patient awareness is essential. As Professor Kathreena Kurian highlighted, many patients are left unaware that they must give consent for their tumour tissue to be used in advanced diagnostics and research. Every eligible patient must have proactive conversations with their clinical team about research opportunities. Greater participation is essential to attract investment, and when trials are easier to set up and recruit for, commercial and academic partners are more likely to set up further studies in the UK. Alongside that, we must address an issue repeatedly raised by patients and families: the right to pursue innovative treatment when standard options have been exhausted. Too many families find themselves travelling abroad, seeking repurposed drugs or raising money online to access treatments. No family should be forced to remortgage their home, empty savings or appeal to strangers online simply to pursue the possibility of more time. These improvements depend on one further requirement: strong national leadership. Currently, no single body within the Government, NHS England or the wider health system holds clear ownership of brain cancer outcomes. Where responsibility is spread everywhere, accountability exists nowhere. Patients deserve to know who is responsible for delivering change. Before I close, I will return to the reason the petition exists. In October 2022, Sarah Bainbridge’s daughter Jess was diagnosed with glioblastoma, an aggressive brain cancer that, until then, her family had never heard of. Jess underwent treatment, including two operations, but her family soon realised that once the standard options were exhausted, very few alternatives remained. Like many other families, they found themselves searching beyond established pathways. Jess died in November 2023. She was just 35 years old, and had three children: Alfred, who was five, and one-year-old twins Billy and Alba. In Sarah’s words: “If I am honest, we have needed Jess every single day since she died, and we still do.” This is not just Jess’s story; it is the story of thousands of families across the UK. Following Jess’s death, Sarah met Georgie Maynard, a young mother living with glioblastoma. Although their circumstances were different, they shared the same frustration: that patients and families were still facing many of the same barriers identified decades earlier. Together, they founded Brain Cancer Justice, not for sympathy or recognition, but to call for urgent change. It was my privilege to meet with Brain Cancer Justice in the lead-up to this debate, and I encourage Ministers to do the same. This should not only be about recognition or reassurance but about ending broken promises, raising ambition and protecting delivery. Patients and families have waited long enough: we must turn “terminal” into “treatable”.
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Order. I am sorry to all hon. and right hon. Members, because I will have to impose a two-minute time limit straightaway, and it is clear that we will not get everyone in.
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It is a pleasure to serve under your chairmanship, Mrs Barker. I thank the hon. Member for Colne Valley (Paul Davies) for opening the debate on behalf of the Petitions Committee with his extremely well thought-through and detailed opening remarks. I pay tribute to the many individuals who have campaigned, and to the advocacy groups that work tirelessly, to improve outcomes for brain cancer patients. As the petitioners request, investment in research is key. I join them—some are my constituents—in calling on the Government to increase research funding and to go further in legally enshrining the right to try genome sequencing, trials, immunotherapy, and repurposed drugs and vaccines. I will use my time to highlight some of the progress that has been made in treatment options, because there is some hope. Trials in the USA have shown very promising results for sonodynamic therapy as a treatment for children with the brain cancer known as diffuse intrinsic pontine glioma. DIPG is an inoperable brain tumour primarily affecting children, and it is deemed terminal on diagnosis. The only form of treatment offered is radiotherapy, which may prolong life for a few months at best. On average, the survival rate is less than 10 months. Sonodynamic therapy uses focused ultrasound to produce a light that interacts with an administered prodrug. It is being worked on now in the USA and progress is being made. I am delighted to say that St Mary’s hospital in London is following suit with some promising results. I am therefore keen to understand from the Minister what the Government’s plans are for rolling out this type of therapy across the UK, and in particular for rolling it out to trials of vulnerable children who are willing to get involved. I conclude by paying tribute once again to those of my constituents who signed the petition and want to see the Government do their bit.
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I thank the hon. Member for setting a fine example of keeping to the time limit.
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I thank the Petitions Committee and my friends from Brain Cancer Justice, who I affectionately think of as the provisional wing of the all-party parliamentary group on brain tumours. In July last year, we launched Margaret’s trial at University College London hospital. Thanks to the donations of thousands of supporters and the work of brilliant researchers and clinicians under Dr Paul Mulholland at UCLH, we are testing whether immunotherapy before surgery can help newly diagnosed glioblastoma patients. It is exactly the kind of innovation that we need more of. I was not prepared to wait for the institutions that we look to for progress. We decided to do it ourselves, and that is precisely what we are doing. We have five people on the trial and space for 11 more. I urge anyone who hears of anybody diagnosed with glioblastoma to consider our trial. It is for newly diagnosed patients pre-treatment. It is free. It is available. There will be excellent care. The trial will not only hopefully extend the lives of those who decide to go on it, but give us the information to find out how we can use repurposed drugs to treat this truly terrible cancer as early as possible.
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My brother-in-law Pip Harding, who is with us in the Public Gallery today, was diagnosed with a glioblastoma in March 2024 and given nine months to live. He is still here today, thank God—looking amazing—because he received treatment that cost a huge amount of money, which was crowdfunded. That highlights a very uncomfortable truth in our society: the treatment is there and available, but only for those who can crowdfund or afford it. I will not go through the challenges, because I know the Minister is well aware of them, but I will talk about the needs. We need clear national accountability for improving brain tumour outcomes. We need sustained and protected investment in brain tumour research so that the funding finally reflects the devastating impact of this disease. We need brain cancer care to be recognised as genuinely time-critical, because while tumours can progress in weeks, the system responds in years. We need a truly national brain cancer clinical trials pipeline, and we need the routine collection and storage of fresh frozen tumour tissue for all brain cancer patients. For families facing diagnosis today, the cost of delay is measured not in statistics, but in lives. The science is advancing. The clinicians are ready. Patients and families are demanding action. The challenge for all of us now is to ensure that the pace of policy finally matches the pace of the disease. Will the Minister set out how the Government will deliver on these priorities: clear accountability, greater research investment, improved access to clinical trials, routine access to genomic testing and tissue preservation, and better outcomes for brain tumour patients by the end of this Parliament? How will Parliament be able to hold the Government accountable for delivering them? If the system cannot match the pace of brain cancer, it will continue to fail and “terminal” will remain the outcome. We must move from “terminal” to “treatable”, so other families can have the second chance that we have now had with our Pip.
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First, I thank all those families in my constituency who have been raising funds for years for the Brain Tumour Charity. I also thank my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh), who has pioneered our debates on this issue over recent years so effectively, and I thank my friend Sonya Kean, who has consistently brought me up to speed on all the recent developments. I just want to ask one question, which comes out of the opening speech of my hon. Friend the Member for Colne Valley (Paul Davies). Let me just run through again the stats from the Brain Cancer Justice provisionals, as they have been described: there is a 30% shortfall in consultant radiologists, which he referred to; only 40% of patients report having access to a clinical nurse specialist; there are only 40 consultant neuro-oncologists nationwide, so there are huge regional gaps; many trusts lack dedicated trial nurses and clinical nurse specialist support; 60% of pathologists report inadequate staffing and resources; and there is no mandatory neuro-oncology training or protected research time. I have just one question, because it is important to give the Minister time to respond to the debate. I just want to know what immediate action will be taken—now—to address the workforce shortages and how we can develop, in a very limited time, a workforce strategy that addresses some of the issues identified in this briefing.
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It is a pleasure to serve under your chairmanship, Mrs Barker. I was reflecting with my constituents Greg and Sally, whose son has a brain tumour, when I met them in my constituency office this morning—they also attended the all-party parliamentary group meeting a few weeks ago—on what has actually changed since I last spoke in a Backbench Business debate on brain tumours in 2023, and the sorry answer on funding is not a lot, and certainly not enough. In the few moments I have in the debate this afternoon, I want to cut to the chase and ask the Minister some direct questions about how we get that money spent and how we get real results to find cures and ways to prolong lives. To start on that, we must have a clear breakdown of the total spend on brain cancers by year over the last decade and how that breaks down by actual treatments; research into treatments, including into how much has been spent on trials; research into other areas with a bearing on brain cancer outcomes; research into how each of those involves artificial intelligence; and infrastructure. Specifically, I would very much like the Minister to address the issue of how the Government are planning to make the radical change in approach to brain tumour detection and treatment that is necessary for the UK to achieve its ambition to move from the fourth to the first quartile for survival in nine years. That is a worthy ambition, but we need to see the detail and the concrete steps that will be taken. It will involve answering big questions about artificial intelligence and other innovations. What I will say in my last few seconds is, given that brain cancer is the biggest killer of under-40s, we need to challenge the idea that it is really a rare cancer and ask whether the definition of “rare” is fit for purpose in the modern age.
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I will use my time today to share the words of Jackie Hall, mum of 14-year-old Max Hall. She says: “Dear Members of Parliament, Max should be worrying about school, football, friends, and what he wants to be when he grows up. Instead, our family is living with the reality that he has a high-grade brain tumour and that there is no cure available to him. We have discovered that many of the treatments currently offered to children with aggressive brain tumours have changed very little over decades. What makes this even harder is knowing that before Max’s diagnosis, he suffered headaches for around a year. Max is funny. He is kind. He is intelligent. He is brave beyond words. He is a child who deserves the same urgency, investment, innovation, and hope that would be demanded for any child standing in front of you today. Children with aggressive brain tumours cannot wait years for discussions, consultations, reports, and strategies. We need meaningful investment in brain tumour research. We need greater access to clinical trials. We need better awareness and earlier diagnosis. If this were your child, would you be satisfied with the options available? Please do not let another generation of children face the same future. Yours sincerely, Jackie Hall Mum to Max”. I will not stop until I get Jackie answers and get policies changed for young people like Max. Mandatory MRIs for long-term sufferers of headaches would be a good start, but after 12 years of warm words and broken promises, the motto of my constituency is deeds, not words. In the name of Max, Jackie and their family, and for the sake of all the people who are suffering, now is the time for this Government to be the one who finally deliver.
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It is a pleasure to serve under your chairship, Mrs Barker. I thank the hon. Member for Colne Valley (Paul Davies) for speaking on behalf of the petitioners, and I thank the petitioners, who are in the Public Gallery today, for all the work they have done. A particular shout out goes to Sarah—I am thinking of Jess. The issue is not rare. In my constituency alone, Claire in Appleton lost her husband, William, while Stevie in Appleton lost her dad Bubba a month ago tomorrow. In Farmoor, Cumnor and Besselsleigh, three people are fighting for their lives, including my sister, Georgie. Her courage and determination has been fantastic. I want to focus on a few things. First, I want to advocate for flash frozen tissue nationally, on a mandatory basis. The genetic code in those tumours is the key to solving that cancer and fighting it. At the moment, we are taking a lot of those tumours out and putting them in the bin. That is killing people. If we had a mandatory focus on that at scale, it would be more possible economically, in addition to our moral duty to keep everybody alive for much longer. We should try to push towards that, so that we have whole-genome sequencing of those tumours. That is key to making the UK a leader, and it would drive a lot of research funds into the UK. I ask the Minister to consider that. I have another request for the Minister. There is no single accountable lead for brain cancer now. Thanks to the hon. Member for Edinburgh South West (Dr Arthur), the Rare Cancers Act 2026 introduced a lead, which is equivalent to 0.1 full-time employee. The national cancer plan has put £5,000 towards a lead. Getting a rare cancer lead who is full time and fully accountable would be a great help.
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Helena Dollimore Lab/Co-op
It is a pleasure to serve under your chairship, Mrs Barker. It is great to see Members in the Chamber in such great numbers. I pay tribute to my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) for her determination in this area. Through her sheer force of nature, she has raised the funds to start these trials that are now ongoing in memory of Margaret, who we all miss dearly. That is testament to her sheer determination to put this situation right. We are all behind her. Unfortunately, the experience described by so many Members today—such as that of Margaret, of my cousin Ewan and of so many of our constituents, where fit, healthy individuals are told that there are no further treatments available for them and there is nothing to try or test—is too common across the country. It is what so many of our constituents are told. I want to press the Minister on some points. As a Government, we have announced more training places in recent weeks. To the point made by my right hon. Friend the Member for Hayes and Harlington (John McDonnell), there are just 40 neuro-oncologists with a specialism in brain cancer around the country. Are we allocating some of those training places specifically to solve this problem of the pipeline of doctors coming through? There are just 15 trials going on for brain cancer, compared with 54 for pancreatic cancer. What measures is the NHS taking to inform patients of the trials available to them? Members are in the Chamber today in great numbers, which sends a clear message to the pharmaceutical industry that we want more emphasis on trials in this area. We will not stand for their inaction any longer. For too long, they have put brain cancer in the “too difficult” box. By showing up in these numbers today, we are showing that the market is failing patients and that they must act. The Government must also use all levers at their disposal to act on this.
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Mike Wood Con
Behind every statistic is a human face. For me, it is my senior parliamentary assistant, Dan Horrocks—a father, husband, a four-time cancer survivor and a brilliant colleague who has fought this disease for 14 years. We are incredibly proud of Dan’s strength and his tireless campaigning, for which he was deservedly awarded the British Empire Medal in the new year honours list. Dan’s journey began with persistent headaches. Three separate GPs missed it. It was only caught because of the keen eyes of a local optician at a free eye test. That is the first hurdle: diagnosis. Far too often, symptoms are dismissed as routine migraines, but the second hurdle is even more devastating. Once a patient is diagnosed with an aggressive glioblastoma, they are offered the NHS gold standard of treatment: surgery, radiotherapy and chemotherapy. Let us be honest: that gold standard has barely changed in decades. It is designed to manage the disease for a short time, not to cure it, and when it runs its course, our constituents are effectively told to go home and to prepare to die. These outcomes do not happen by accident. They are the direct result of structures and choices made over many years. When a clinical trial does happen, like the groundbreaking trial established in memory of Margaret, the sister of the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh), it happens because a handful of grieving, determined people refuse to take no for an answer. If it requires extraordinary political intervention just to start one trial, the system is fundamentally broken, and we need a radical shift. First, we must demand clear, measurable targets, specifying exactly how many clinical trials we expect to see, how many patients will be recruited and who is accountable. Secondly, we need an immediate, aggressive focus on repurposing existing licensed drugs that already control other cancers to see whether they can cross the blood-brain barrier and save lives today. We cannot allow the next generation of patients to be left stranded. Dan and the thousands of families like his are not asking for miracles; they are looking for justice.
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It is wonderful to see you in the Chair, Mrs Barker. There cannot be many areas of policy where campaigners are asking not for more money, but simply for money that has already been promised to be used. I really hope that the Minister can offer some good news today about the remaining £23 million to £25 million, because there are so many areas where it could make a big difference—and fast. There are doctors and scientists who can see this money but cannot reach it. It is an enormous waste of talent, goodwill and, importantly, hope. We are three years beyond the point at which all of the £40 million should have been awarded already, yet at the last indication not even half has been issued and spent. That must be beyond frustrating for so many families across the country. Colleagues will have heard me speak about my two amazing constituents Khuram and Yasmin. Their daughter Amani tragically passed away from a glioblastoma in February 2023 aged just 23. Before her death, the family organised Luton Walk of Hope. Amani spoke to those attending, and her words summarised the mission of so many cancer sufferers: “It might be too late for me, but I want to make a difference for others.” As Amani’s cancer progressed, her parents had to fundraise £100,000 for treatments. No one should have to fundraise to access a drug that could save their lives. Amani’s mum, Yasmin, is in the Public Gallery. She has said that all the fundraising they do is in the hope that brain tumour diagnosis will not have to be a life sentence for others. But brain tumour sufferers and their families need more than hope; they need concrete promises and actions that follow through. That means the dedicated money being spent, expert doctors being listened to, improved diagnosis, timelines for research being set—and, importantly, honoured—and clinical trials being massively expanded. The urgency felt by families needs to be mirrored by policymakers in Whitehall.
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It is an honour to serve under your guidance, Mrs Barker. In April 2025, my constituent Phil was diagnosed with aggressive, incurable glioblastoma. Due to the tumour’s location, surgery was not possible, and Phil was given a prognosis of just 12 to 18 months. As parents of two young children, Phil and his wife found themselves navigating a complex system and researching treatments, clinical trials and emerging therapies, and doing so pretty much on their own. Despite evidence suggesting that immunotherapy could help Phil, NHS funding for treatment was denied, and he could only access it through his own tenacity and pharmaceutical company support. Phil’s experience is typical for brain cancer patients, represented by everyone here and beyond: limited treatment options, barriers to clinical trials and being forced to fight your own corner to get anywhere at all. I thank Phil and his family for sharing his story with me and allowing me to share it with you, Chair, and with the Minister. I also thank the 1,241 people who signed the petition in my constituency, many of whom are directly affected. Alongside everybody here, we simply ask that the Government deliver the full funding promised for brain tumour research. Given that only 12% of patients get to participate in trials, we also ask the Government to ensure comprehensive access to those trials for Phil and for everyone.
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It is a pleasure to serve under your chairship, Mrs Barker. I thank the 54 constituents of Newport West and Islwyn who signed the petition calling for an increased focus on tackling brain cancer. I will speak about Owain’s law, a campaign that seeks to end the postcode lottery across the UK in accessing brain tumour tissue freezing. That is critical for preserving the fresh DNA and RNA samples needed for later advanced genomic testing, clinical trials and personalised treatment. The current postcode lottery in accessing fresh brain tissue freezing means reduced treatment options for many and barely improving survival rates for decades. I was really pleased to meet Ellie James again last week, after her husband Owain died from a grade 4 brain tumour aged just 35. During his treatment, Owain and Ellie pursued a personalised cancer vaccine using Owain’s tumour tissue. However, just 1 cm of the 7 cm tumour removed during the surgery was fresh frozen. While that allowed three personalised vaccines to be made, when the tumour returned no further treatments could be made. Owain later died in June 2024. No one had discussed with Owain or his family how the tissue would be preserved or the implications of that decision. Like others, I again press the Minister on whether she will set out a funded delivery plan to close these gaps in freezer capacity. No one should have a postcode lottery on those important matters of life and death. Will she commission new national guidance on the removal and freezing of suitable brain tissue following diagnosis? Owain’s tragic case needs to be learned from if we are to improve treatments for those with brain cancer. Relatively small investments, which are already waiting to be spent, could close the postcode lottery in freezing capacity, ensure uniform quality of care and have the potential to be truly transformational.
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It is a pleasure to see you in the Chair, Mrs Barker. There are moments that remind us why we are MPs and what we are here to do, and there are people who do the same. Archie Goodburn is one of those people. I met Archie when he was 23. He is an elite athlete—a Commonwealth swimmer for Scotland. However, Archie has an inoperable brain tumour, and through the most unforgivable sequence of events he was being denied access to a drug that clinicians told him could make a difference and ultimately save his life. The drug is called Vorasidenib. It has been successfully trialled in our health board in Lothian and was available in other parts of Scotland, but not for Archie in Edinburgh. Instead, he was told he could have chemo or radiotherapy, both of which have side effects that could affect his cognitive and—terrifyingly for a potential Olympic athlete—physical ability. Archie’s story illustrates what is wrong with our current approach to brain cancer—to its research, treatment and the patients themselves. Archie and his family have done a fantastic job, but they should not have to. The money that was promised for brain cancer research 10 years ago is still not fully disbursed or spent. In the petition there are specific asks to ringfence not just that money, but new money; to have a dedicated full-time brain cancer lead who has personal experience of the disease; and the right to use drugs that are licensed in this country already for other conditions to see if they work for brain tumours. I feel that the Government are open to those suggestions, because when I raised Archie’s case in the Chamber, a Health Minister came to find me in the Tea Room to talk about it. Another stopped me in Portcullis House to ask about it. I know that the will is there, and I ask the Minister that she carry it through.

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