(2 weeks, 6 days ago)
Commons ChamberI 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.
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.
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.
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?
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.
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.
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.
(1 month, 3 weeks ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
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Debates on brain tumours are a bit like buses—there are none for ages, then they all come one after the other. I thank my hon. Friend the Member for Caerphilly (Chris Evans) for organising this debate—the second of two debates on this topic on consecutive days. I send my condolences to Ellie and her entire family on the death of Owain. I think, like a number of people in this room, I understand some of what she has experienced. I have to inform you, Mr Western, that a former Labour MP is close to dying of a glioblastoma—another politician after Tessa Jowell and my sister Margaret. I want to ask: when do we intervene to do something about this, rather than talk about it?
I am supportive of any measure that genuinely improves patient outcomes for glioblastoma patients. Anything that increases survival of this devastating disease is worth supporting, but in my own experience, working closely with clinicians and supporting my late sister through her glioblastoma treatment, the most effective way to improve outcomes for patients with brain tumours is by accessing clinical drug trials. Without trials there is no route to better treatment or lifelines, and for too many patients, no pathway at all.
I think we can all agree that the number of clinical trials under way for brain tumours is entirely inadequate. It is impossible to justify that, since 2008, the National Institute for Health and Care Research has invested just £13.7 million towards brain tumour research and none of the funding to date has supported using repurposed drugs—that is, using some of the immunotherapy drugs that are changing the face of the larger cancers and their outcomes.
Phil Brickell (Bolton West) (Lab)
I want to pay tribute to my constituent, Alex Davies, who sadly passed away last November, the day after his 50th birthday, two years after his glioblastoma diagnosis. He is survived by his wife Emma and their two daughters. Alex volunteered to have his brain tissue frozen after two surgeries, for ongoing research at the Christie hospital in Manchester.
Does my hon. Friend agree that the Government’s national cancer plan should include more and better-used funding for research and more clinical trials, particularly for poorly understood cancers such as glioblastoma on which she has campaigned tenaciously over many years?
My hon Friend is absolutely right. Let us be absolutely clear: there is no route for an improvement in any of the rare cancers unless there are more trials—and the system mitigates against that. There is a lot of talk at the moment about the Government of stakeholders. The stakeholders involved in drug trials—the major pharma companies and cancer charities—do not get involved in these trials because for pharma there is no money in it, and for the big charities, there seems to be more interest in primary science and mice work than there is in using some of these amazing drugs to find out whether they can provide some sort of support to people with rare cancers.
It is the lack of treatment options, and this inaction, that led me, alongside my sister’s extraordinary network of friends and supporters, to launch our own trial in her memory. When the system does not move quickly enough, patients and families are forced to take matters into their own hands. We have an established clinical trial now under way at the University College London Hospitals clinical research facility with encouraging early indicators, a wider trial programme mapped out and further trials ready to follow with protocols written.
We are seeking to clarify how to secure the funding needed to repeat and extend this work using alternative drugs, so that more patients can benefit. We continue to raise funds to support that goal.
Yesterday the hon. Member outlined the tremendous work being done to privately raise about £1 million for research. Does she agree that that needs to be supplemented and complemented by statutory funding to make the dramatic difference that she, and hopefully all of us, agree needs to happen?
I completely agree with the hon. Member. Anything that we have raised—£1 million over two years—is a drop in the ocean. It is an important drop in the ocean, and it has led to action, which is what we need, but in the longer term, it has to be the Government and the pharmaceuticals that are not intervened on if we are to make progress.
Monica Harding
May I pay tribute to the hon. Member for everything she is doing on glioblastoma? It has affected my own family: my brother-in-law, Pip Harding, was diagnosed with a glioblastoma. He has received oncothermia therapy, but only through crowdfunding. The cost of—I think—10 treatments was something like £40,000, which he got from his friends and family. That shows the generosity of the public, as well as how interested the public are in this, so does she agree that we should ask the Government to match the public spirit on this?
I thank the hon. Member for all the work she does; it is thrilling to hear that her brother-in-law has made such progress with the Oncotherm machine. The machine is in the UK because my sister raised the funds to bring it over, but it cannot go into an NHS hospital because it cannot get approval from the Medicines and Healthcare products Regulatory Agency, so it is for people who can raise the money to access it, as she rightly says. Forty thousand pounds is a lot of money, but in this world it is only a fraction of what other possible treatments may cost; people sell their homes, spend their pensions and leave themselves completely bankrupt on the death of a loved one. It is the wild west out there, as she knows.
We have established a trial at UCLH, and we have encouraging early indicators, but we need to do so much more. Our hope is to do 10 trials with repurposed drugs, and we want to clarify how we can bid for the money from the NIHR. We are not the only people doing this—we are not exceptional. Patients and families who see the lack of alternatives are getting involved and raising money, as the hon. Member just said, but anything we can raise is insignificant in comparison with what the Government or big pharma can raise. How is it that, upon Tessa Jowell’s death, the previous Government can have given the NIHR £40 million for research, in good faith, and none of it has been spent on testing out repurposed drugs?
I am grateful that in yesterday’s debate the Minister highlighted the letter that I received from the head of the NIHR, Lucy Chappell, setting out the routes for funding and how they can be accessed. As a result of that debate, I went back to read the letter. It does not take us any further; the funding routes are still impossible to navigate in any effective way. I therefore thank the Minister for her commitment to provide further guidance. I do not want that just for me, for the work that I do, or for the work that Dr Mulholland does at UCLH; I want to encourage all the flowers to bloom, because somebody may actually hit on the progress we need.
Even for an experienced clinical team with an established research base, the funding process is complex, fragmented and difficult to navigate. If it is challenging for clinical teams in major London teaching hospitals, I worry deeply about how many other clinical teams, without the same visibility or support, will simply fall away before a trial even has the chance to begin. Will the Minister consider how clearer, more navigable routes to accessing funding can be set out, and provide clearer direction, so that the money committed by the Government can reach the trials that patients so urgently need?
I thank my hon. Friend. That story makes today’s debate that bit more impactful for me and for us all. My friend is a veteran. He served in the forces with great courage. He has shoulders as broad as a rugby player. He is a man who could take on anything. He laid his life on the line for the freedom of everyone here. Yet, he could do nothing but watch—
The hon. Gentleman has been very kind to me in all these debates and has called me soft-hearted. If I am soft-hearted, that perhaps applies to both of us.
Clive Jones (Wokingham) (LD)
It is a pleasure to serve under your chairship, Mr Western. I thank the hon. Member for Caerphilly (Chris Evans) for securing this important debate, and all other hon. Members who have contributed. I would also like to highlight the incredible work done by the campaigners for Owain’s law—you are doing a most remarkable campaign.
Owain was diagnosed with a grade 4 tumour in 2022 and sadly died in 2024. Despite showing success, Owain stopped receiving effective treatment because not enough of his brain tissue was frozen to make further immunotherapy vaccines. Owain’s wife, Ellie, is calling for fair and equal access to brain tissue freezing, enabling every patient to access new treatments and research. The Government need to listen to the campaign, to act and to invest in brain tumour freezing so that we can start to save more lives.
Brain cancer is already the biggest killer of people under 40, and 45% of brain cancers are diagnosed in an emergency setting, meaning that the cancer has progressed untreated and that the patient is more unlikely to tolerate treatment.
Given so many factors affect survival outcomes for brain cancer patients, the Government need to start improving treatment of brain cancer now. Most brain cancer patients in Wokingham cannot access advanced technologies, such as personalised immunotherapy cancer treatments that rely on frozen tissue. The Royal Berkshire NHS foundation trust and the Frimley Health NHS foundation trust do not have any medical-grade freezers suitable for storing tissue samples, and they have no access to the rapid freezing equipment suitable for brain tissue. That situation needs to change.
The cost of providing the right freezers would be small for each hospital trust. I entirely agree with my hon. Friend the Member for Witney (Charlie Maynard) and other Members who have today called for other tissues to be frozen, not just brain tissue.
Like many other Members today, I am really pleased to see the Minister in her place. I have a very simple question for her: can she confirm that equal access to high-quality tissue storage pathways will be addressed in the upcoming national cancer plan?
On a point of order, Mr Western. I want to make a clarification. In my response to the intervention by the hon. Member for Esher and Walton (Monica Harding), I mixed up quangos. I suggested that it was the fault of the MHRA that the Oncotherm machine was not in an NHS hospital. It is, of course, the fault of the National Institute for Health and Care Excellence. I would not want anybody to think that that machine has not been approved and registered by the MHRA.
It is a pleasure to serve under your chairmanship, Mr Western. I thank my hon. Friend the Member for Caerphilly (Chris Evans) and all other hon. Members for their contributions, many of which were deeply personal and moving. I thank them all for their courage and soft-heartedness, and for bringing such compassion and insight to this debate.
Let me say how sorry I was to hear about the loss of Owain at the age of just 34. His story reminds us that many people lose their lives to brain cancer very shortly after diagnosis, and we are determined to do all we can to change that. I extend my deepest sympathies to his wife Ellie, who is here today, and his daughter Amelia. I would be honoured to meet Ellie and my hon. Friend to hear more about her and Owain’s story.
Just yesterday, I was here for a debate on less survivable cancers. These debates and the petition show how much progress on cancer matters to Parliament and the public. My hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) said that debates on brain cancer are a bit like buses: there are none for ages, then suddenly three at once. I want to acknowledge that her work has led to the higher profile for such debates in Parliament, more of which are taking place. I thank and commend her for her efforts in this field.
My hon. Friend the Member for Caerphilly raised incredibly serious issues about how informed consent, tissue freezing and innovation are impacting patients. I will take those points in turn. I will primarily address the context in England, although I acknowledge that areas of this policy apply across the UK. On informed consent and tissue storage, as a cancer patient myself, I find it very troubling when patients say they have not been informed about their tissue storage, as campaigners have reported. I completely understand why the Owain’s law petition calls for people to be properly informed about the choices available to them. Let me be clear: patients must always be fully informed about their rights, options and choices regarding the storage and future use of their tissue samples.
The Human Tissue Authority was established in 2004 to oversee and licence organisations in the removal, storage and use of human tissue in England, Wales and Northern Ireland. Under the Human Tissue (Quality and Safety for Human Application) Regulations 2007, consent must be sought to collect human tissues and cells that are to be used in patient treatment. The Human Tissue Authority ensures compliance against those regulations as part of its standards, inspection and licensing regime.
Consent should be sought in line with the suitable treatment options available to individual patients, which would be determined by their clinicians. That requirement extends to the collection of tumour samples that are to be used as the starting material in the manufacture of cancer vaccines. The Government expect establishments to be held to the highest standards to ensure appropriate and ethical use of human tissue. I understand that my hon. Friend is meeting with the Human Tissue Authority to discuss this matter further, and I know that he will keep me closely in the loop on that.
Owain’s law also asks for every NHS hospital to freeze suitable brain tumour tissue to allow patients to benefit from emerging cancer treatments. Individual pathology services in England have their own processes, known as standard operating procedures, for fresh freezing of tissue samples. NHS procedures mirror local capabilities, which means the capacity for fresh freezing often depends on the availability of neurosurgery services in the local area.
The human tissue regulations were introduced due to concerns that pathologists were retaining human tissues without appropriate consent. Any changes will need to be carefully considered by the Government. However, as was requested by my hon. Friend the Member for Caerphilly and the hon. Member for Strangford (Jim Shannon), I am happy to liaise with the devolved Governments on this issue, and I commit today to further exploring the current arrangements for freezing tissues and the options for change, particularly for brain tumour tissues.
Beyond improving access to emerging treatments through freezing, we know that the most effective way to improve survival rates from cancers, including brain cancers, is to catch them early. That is why we have agreed around £600 million of capital investment in diagnostics for this financial year. Over £100 million will go to histopathology services, automation and digital diagnostics to improve pathology laboratories.
I apologise for challenging the Minister’s assertion, but in the case of glioblastoma, it really does not matter how early it is detected; the consequence is the same. It is a stage 4 tumour that is going to kill the person and the average life expectancy is nine months.
I note my hon. Friend’s clarification, but with that in mind, we do know that it is important to diagnose all cancers as quickly as possible, and the diagnosis of brain cancers is equally important so as to start treatment as quickly as possible. To that end, the Chancellor announced further investment in diagnostics at the autumn statement as part of a £6 billion capital investment to deliver constitutional standards.
On genomics, I met the chief scientific officer for genomics yesterday to discuss how we ensure that the UK remains a world leader in genomics—which we are—and that we can apply genomics to improve cancer outcomes. We hope that our investment in diagnostics and pathology will mean that, in future, patients such as Owain will access a greater range of treatment options.
My hon. Friend the Member for Caerphilly and Ellie are entirely right to raise the importance of innovation, particularly for less survivable cancers such as brain cancer. The Government are proud to support the Rare Cancers Bill introduced by my hon. Friend the Member for Edinburgh South West (Dr Arthur). Next Friday, Baroness Elliott will move its Second Reading in the other place.
We will go even further to ensure that all patients with brain cancer have access to cutting edge clinical trials, innovation and lifesaving treatments. As part of our action, the National Institute for Health and Care Research announced the pioneering brain tumour research consortium to accelerate research into new brain tumour treatments across the UK. The NIHR is backing the consortium with an initial £13.7 million and more money to come this year. The world-leading consortium aims to transform outcomes for adults and children who are living with brain tumours and for their families, ultimately reducing the number of lives lost to cancer. As I confirmed yesterday, I will write to my hon. Friend the Member for Mitcham and Morden in detail regarding access to funding. I am happy to commit to seeking information and exploring how we can make access to funding much clearer and more transparent.
I am pleased to confirm that the national cancer plan for England will be published in just a few short weeks, in early February. It will focus on rarer cancers, including brain cancer, and will include further details on how we will improve outcomes and work with stakeholders such as the Tessa Jowell Brain Cancer Mission to do so. The plan will detail further action to speed up diagnosis and treatment in England, ensuring that patients have access to the latest treatments and technology and ultimately driving up survival rates.
(1 month, 3 weeks ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
I thank the hon. Member for Wokingham (Clive Jones) for organising this debate. My purpose is to find a cure for glioblastoma brain tumours, the biggest cancer killer of children and adults under 40, with a life expectancy from diagnosis of just nine months and a five-year survival rate of 5%. The only way to find a cure and improve outcomes for a cancer that has seen no improvement in 30 years is through drug trials.
In the absence of commercial or charitable glioblastoma drug trials, we launched our own trial in memory of my late sister, Margaret, in July last year. The trial is being run by Dr Paul Mulholland, Europe’s leading consultant on glioblastoma, who is based at University College London. It will include 16 newly diagnosed patients at University College hospital. This is a pre-surgery immunotherapy trial focused on patients who have received no prior treatment. The drug is given before surgery, allowing the immune system to attack the tumour before it is removed.
I am delighted to confirm that we have already recruited five patients and, while the trial remains at an early stage, we are encouraged by the early findings. This is only the start. This journey has proven extraordinarily difficult and has been possible only because of an alignment of factors that very few will ever encounter: access to one of Europe’s leading clinicians working from a major London teaching hospital, alongside a world-class university; a group of my sister’s friends who have campaigned tirelessly and raised more than £1 million in two years; and the engagement and backing of the Secretary of State for Health and Social Care to get the trial over the line.
Our ambition is to establish 10 such trials using 10 different immunotherapy drugs, but ultimately our ability to raise money will end. How can Dr Mulholland apply for funding to support the programme of trials using repurposed immunotherapy drugs? Can the Minister’s team provide a written explanation and a link setting out how a bid can be made to the NIHR to access those funds? It is a straight question, and I would welcome a straight answer.
(2 months, 3 weeks ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
I beg to move,
That this House has considered the potential merits of a comprehensive acquired brain injury action plan.
Dickens wrote,
“Reflect upon your present blessings—of which every man has many—not on your past misfortunes, of which all men have some.”
There are few greater misfortunes than an acquired disability. Among those, a brain injury can challenge every aspect of life, whether people can walk, talk or think—or at least think straight. The effects are various: they can be mild or severe, and recovery will often take not just weeks or months, although the initial trauma can be treated in that timeframe, but many years. However, an improvement can be made over the long term.
Most of us think, “This will never happen to me.” I guess that is true of most misfortunes, including ones of this severity. Brain injury is the leading cause of disability and death among people under 40 in the UK. It can happen at any time, in any place. The causes, again, are various. One thinks of sporting injuries, or perhaps an attack—a violent incident. Of course, the principal causes are things like road traffic accidents, motorcycle and car accidents. Acquired brain injury, for the reasons I have given, has long warranted more attention than it has received, both publicly and among policymakers.
While the Department of Health and Social Care plays a central role in dealing with the immediate trauma caused by the sorts of accidents I have described, many other Government Departments have a relationship with the effects of brain injury. That is well illustrated by the work done by the all-party parliamentary group for acquired brain injury, which I am now proud to chair, and published in a report to which I will refer later in my speech.
We made the case that a cross-departmental approach to brain injury is required, for exactly the reasons I have set out. Of course, it affects the Department of Health, but it also affects the Department for Culture, Media and Sport—I spoke about sporting injuries a moment or two ago. It affects the Ministry of Justice, because such a high proportion of the incarcerated have brain injuries. It affects almost all aspects of Government, on which I know other contributors to this debate will focus, so a lateral approach to the way that public policymakers consider brain injury and its effects is critical.
As you will know, Dame Siobhain, as an extremely experienced and very wise Member of this House, might I say—
I am grateful for the hon. Gentleman’s contribution. He makes a valuable point and an interesting suggestion that I will reflect on. He is certainly right that more can be done to affect brain injury in the first place. I have spoken a bit about its effects, but he is right to speak at greater length than I did about its causes. In the area of sport, of course, he is right that we now know that heading a football does all kinds of damage that no one imagined a generation or two ago. His suggestion is well made and worthy of further consideration.
Around 350,000 people a year are admitted to hospital with acquired brain injury—that is one every 90 seconds. About 125,000 of those are admitted following a traumatic brain injury, around 43,000 with brain tumours and others following strokes. I pay tribute to Lincolnshire brain tumour support group, of which I am president, and to Headway, which I will say more about in due course. The end result of those admissions is that about 1.3 million people are living with the consequences of acquired brain injury every day. They and their families, loved ones and friends, and the communities of which they are part, are dealing with the effects.
According to our all-party group’s latest report, the cost to the UK economy through healthcare, social care, lost productivity and wider public services is £43 billion annually, which equates to 1.3% of GDP. Of that, £20 billion is accounted for within the NHS and social care budget for acute long-term care, £21.5 billion is attributed to lost productivity, £1.5 billion is spent in the criminal justice system and the Department for Education—yet another Government Department that needs to be involved in the consideration of this issue in the lateral way I mentioned—and about £1.9 billion is spent on benefits. Leaving aside the human cost and the visceral effects brain injury can have on affected individuals and those who care for them, this has a considerable effect on Government, the Exchequer and the public purse.
Those ramifications only scratch the surface of the wider social cost. The real cost is in lives disrupted, plans abandoned and ambitions jettisoned as a result of brain injury; in parents seeing a child’s personality change overnight and carers stretched to their limits, with little or no respite, because symptoms are dismissed as being mild or imperceptible or attributed to some other cause entirely. Although less obvious, those effects are just as devastating. When those costs are added to the ones I have described, the all-party group estimates that the real cost of acquired brain injury is £91.5 billion. That is about half of what the NHS spends every year. It is extraordinary that this issue is not given greater consideration. I am delighted that this debate gives us a chance to do so, at least for this short time. I thank all colleagues across the House who have been part of these efforts.
We have argued for what we call a right to rehab. Putting aside the substantial financial cost, the physical and emotional costs are still higher. The estimates do not include many of the costs associated with homelessness, addiction, mental health services and psychiatric stays. The cost to the NHS and welfare of lengthy treatment and recovery is huge and rises quickly during spells in hospital before one even receives community support and longer-term social care provision. Much of this could be prevented, and many of the costs could be reduced, if we had the right to rehab.
Much work has been done on this subject, including by Headway, which I mentioned earlier, and the United Kingdom Acquired Brain Injury Forum. A report from earlier this year, commissioned by the APPG, urged the Government to invest in specialist neuro-rehabilitation to save long-term societal costs. The report called for brain injury to be treated on a par with cancer and dementia. A statutory right to rehab in every region means that specialist neuro-rehabilitation services after an acquired brain injury would be put in place.
None of the failures that we see today in response to brain injuries is inevitable. The Ministry of Defence already guarantees the right to rehabilitation for military personnel, so we have a precedent. We want to build on that precedent, across Government, for those affected by brain injury.
We know from the MOD the results of having that right for rehabilitation—shorter recovery times, better outcomes, restored lives and improved prospects. The same approach is being piloted by the National Rehabilitation Centre, where every £43,000 invested in rehab yields savings of up to £680,000. That is a remarkable 16:1 return on investment.
Now is the time to extend the entitlement adopted by the MOD much more widely. We must establish a national neuro-rehabilitation framework that guarantees that access to specialist care is not a lottery, but a certain path to recovery. In doing so, money would certainly be saved, but life chances would be improved immeasurably, too. High-quality rehabilitation reduces the risk of homelessness, addiction and a drift into lawlessness. It allows people to contribute, return to work and rebuild lives and relationships—to begin to stand tall again.
Now is the time for the Government to act. I have every confidence that the Minister will rise to her feet at the summation of this debate and tell us that she has not only thoroughly studied the all-party group’s report—daily, perhaps—but that she is ready to respond in the way that we invite.
I pay tribute to the hon. Member for Rhondda and Ogmore (Chris Bryant), who chaired the APPG before I did—I was his vice-chairman for many years. He drove the original version of the report, which was republished more recently. It is an outstanding piece of work. We all know that APPGs vary, but this one is focused on the subject for which it is responsible and is determined to make its voice heard, because of the all-party support it attracts and because of the salience and significance of this subject.
Given the number of people affected by brain injury, the comparatively low cost of effective interventions, such as rehabilitation and community support, and the ongoing lack of support services, there continues to be a strong need for a proper strategy to be put in place.
I spoke earlier about a lateral approach. We are calling for a national strategy on brain injury. Around 60% of prisoners report having an acquired brain injury. We discussed that at a recent APPG meeting, where we heard from experts in the field. I have served as a Minister in multiple Departments—I will not list them all—and I know that cross-departmental working is tough, and the Minister will know that too, but it can be done. It requires structures to be created that facilitate Ministers to come together. The Cabinet Office might be able to play a part. I served in the Cabinet Office and its purpose, in a sense, is to deal with those issues that could otherwise fall between the cracks and departmental silos. However it is done, we need a national strategy.
As far back as 2001, the Health Committee published a report on head injury, issuing 28 recommendations that included, as a matter of urgency, finding ways of improving methods of data collection on incidence, prevalence and severity. In 2005, the national service framework for long-term neurological conditions was launched; it contained many good ideas, but had no mandate and no funding. In 2010, the National Audit Office published a report, “Major Trauma Care in England”, which highlighted the need for improvement in major trauma care. That led to the establishment—you may remember it, Dame Siobhain—of trauma networks, with a centralised and specialised approach to trauma care and service across the country.
The excellent work of the APPG for acquired brain injury, which was reformed in 2017, showed that there was a strong case for a cross-party commitment to action. I have already spoken about the 2018 report, which called for a national reconsideration of rehabilitation and the collation of reliable statistics, given the problems with data collection and analysis that prevail.
To be fair to the previous Government, our report was well received by Ministers. Indeed, they responded to what we had called for by committing to publish a strategy on acquired head injury in 2021. The following year, there was a call for evidence to inform the development of such a strategy. The previous Government said that they were going to do it, committed to the principle and welcomed the work that we were doing. However, we then, of course, had the inconvenience of an election—one of the aspects of democracy that sometimes gets in the way of these sorts of things. Therefore, the work was not brought to a conclusion.
Earlier this year, the current Government announced their intention to develop an “action-oriented, and accountable” ABI action plan
“with input from NHS England and other Government departments”.
It was due to be published “this year”—well, the year is running out, Minister. However, there are still a couple of sitting weeks left: a statement could be brought to the House and perhaps a document could be published that responds to the calls that we have made. We have the work that the previous Government and this Government have done. There has been no party politics; over time, Ministers have recognised the challenge—the scale of the problem—and the reasons for addressing it, which I have set out.
We can hope that this Minister, who I know is dutiful and diligent, will rise to exactly that challenge. I do not know whether I am flattering her, Dame Siobhain—I am doing my best.
Following representations from myself and others, the Minister, who has responsibility for public health and prevention, kindly responded to say that the Government will publish an action plan in 2026. I hope that it will be published as early as possible—if not before Christmas, perhaps as an early new year’s resolution.
After years of campaigning by charities and MPs, the excellent news is that there now seems to be momentum on this issue, which is what sufferers and their families deserve; it is what they warrant and certainly what they need. The plan needs to include a focus on better community rehabilitation and on how that will help to achieve real change for people with ABI. It could also include national training for local authority and integrated care board commissioners, and for social workers, on the complexities of ABI. I have talked about the subtlety of the effects that ABI can have, including the changed personality that many people experience as a result of a brain injury. Addressing such subtle changes requires a level of understanding and expertise, so national training could be really important and of immense value.
I hope that the plan will also include funding for community-based specialist brain injury services. Staggeringly, the vital research by Dr Alyson Norman found that a third of serious case reviews in social services involved someone with a brain injury. Dr Norman lost her own brother to suicide after he suffered a lifetime of untreated brain injuries sustained in childhood.
Given that brain injury is no less than a hidden epidemic, it is imperative that the Government take further action to collect statistics about it, so that we can accurately ascertain the numbers impacted. We need a UK-wide consensus on which conditions are classified and coded as brain injury, and to make that data freely available. Access to hospital admission data on brain injuries must be free; currently, charities face significant costs.
The charity Headway, which has done so much in this field, is not an immensely wealthy organisation and so those costs are significant to it. I hope that we get some reassurance on that point. Research by Headway has shown that over three quarters of brain injury survivors encounter daily challenges due to the hidden nature of their injury, and that nine out of 10 people affected by a brain injury cite societal misunderstanding as a major obstacle in navigating life with a hidden disability. Collecting those facts and figures is important because of the nature of acquired brain injury.
I will not say too much more about the costs to the sector, except that over the past three years several local Headway charities have permanently closed, including one in the last month. Three local volunteer branches have also shut down. That is because of rising costs of all kinds, which I do not need to list here. Closures really do risk brain injury survivors feeling lost. This is an area of work and a need that can go unrecognised and unseen. The feeling of isolation and loneliness—this is, as I described, a hidden epidemic—can place immense strain on families as survivors are no longer able to access, for example, the specialist daycare centres that they might otherwise enjoy.
We need to find a way of granting exemptions for charities from things such as the employer national insurance charges. I hope that the Minister will look at that, or even speak about it in this debate. Some 57% of Headway charities say that they have experienced delays in receiving payments from local authorities and integrated care boards. Some charities have even had to employ additional staff members purely to chase the debts that they were owed. These are small organisations with limited budgets; they just need help.
I know that other hon. Members want to contribute to the debate and can see their eagerness to do so, so I will draw my remarks to a close. For survivors, a head injury is just the beginning; the real challenge after survival lies in the days, months and years that follow. Individuals and their families struggle to navigate, with minimal support, a fragmented and underfunded system of rehabilitation. I know that because more than 40 years ago, like so many other young people, I suffered a serious head injury. But the key for me is that it did not stop me from doing what I wanted or being what I became. That is fundamental for anyone with an acquired disability.
It is a matter of record that I decided to become a Conservative MP when I was seven—I was probably six, actually. That did not alter as a result of my head injury, but it might have done. I have seen those much more seriously affected by the traumatic injury they endured. As I looked at them I thought, “There but for the grace of God go I”, so I was determined thereafter to do all I could to fight for people with serious head injuries who struggle with their effects. I have been determined to champion their cause and to turn my hopes on their behalf, and their hopes too, into reality.
I started with Dickens, one of our greatest writers, and I will end with Tolstoy, the great Russian writer. He wrote:
“As long as there is life, there is happiness. There is a great deal, a great deal before us.”
For everyone, regardless of what they suffer, to be able to glean that happiness, through the care and support that they receive, should be the ambition of every Government Minister and every Member of this House.
Several hon. Members rose—
I ask that Members consider a four or five-minute time limit on their speeches so that everybody can be heard this afternoon, although I do not want to do that on a forced basis.
(4 months, 1 week ago)
Commons ChamberI do not know the details of that case, but if the hon. Gentleman writes to me, I can certainly come back to him on it. That sounds like a vital service that needs to be protected.
In the Secretary of State’s list of what has happened since his last oral questions, he failed to mention the appointment of our hon. Friend the Member for Glasgow South West (Dr Ahmed) as a Minister. He is particularly looking at life sciences. Without life sciences and drug trials, we will not see an improvement in outcomes for rare cancers. Can the Secretary of State make a statement on what will be done about rare cancers?
My hon. Friend is absolutely right to welcome my hon. Friend the Minister to his place. I will be honest: in effect, he has been a Minister since we came into government. We very much welcome the work that he has been putting in.
We are determined to do more on rare cancers, working with my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh). All the work that she is doing, particularly on rare brain cancers, is much appreciated.
(7 months, 2 weeks ago)
Commons Chamber
Monica Harding (Esher and Walton) (LD)
I once more thank the hon. Member for Edinburgh South West (Dr Arthur) for all he has done to bring the Bill forward. We, along with thousands of families throughout the UK, all owe him a huge debt. I am proud to have supported the Bill from the very beginning. I also pay tribute to the ongoing work of the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh), whose inspirational advocacy has set the example on these issues, particularly for new MPs like me.
I do not think I need take up much time restating why the Rare Cancers Bill matters; every hon. Member who sat alongside me in the Bill Committee knows that already, which is why we reported it to the House unamended. The Minister also knows, which is why the Government have repeatedly pledged their support, and organisations working with rare cancers know too. The Brain Tumour Charity describes this legislation as “a Bill of hope” and Pancreatic Cancer UK talks of its potential to transform survival for rare cancers. That potential sits with us today.
The Rare Cancers Bill takes concrete and common-sense steps to facilitate research into rare cancers, to improve the speed and quality of necessary clinical trials, and to help get orphan drugs—medicines often neglected because they target uncommon conditions—to those patients who so desperately need them. I urge the House to advance the Bill and ensure that its provisions become law as rapidly as possible. So much depends on getting this one right. To that end, I briefly remind the House what exactly is at stake today for families, including my own, throughout this country.
When I spoke on Second Reading, I told the story of Group Captain Pip Harding, my brother-in-law, who was diagnosed with an aggressive stage 4 glioblastoma in February 2024. His prognosis was such that he should not be here today. Pip is married with five children. He has served in the Royal Air Force in the Indo-Pacific, in Afghanistan and in Iraq. I am immensely proud of him, not least because of his battle against this devastating diagnosis.
Pip’s family, friends and those who loved him rallied around him. More than 600 of them set up a GoFundMe page to cover the cost of an experimental cancer treatment, oncothermia, which uses radio frequencies to target and treat malignant cancer cells. I am happier than I can say to be able to tell the House that Pip is alive and well, and that the tumour has shrunk from 7cm to less than 1 cm as a result of that treatment. For Pip’s loved ones, of course, that means the world—oncothermia is winning it for him. It means that there is more time for his family and more time for more treatments to come online to get his health back.
It is a matter of delight that the hon. Lady’s brother-in-law is still well and that the tumour has shrunk. But I should say to the House and all Members that that machine, which my late sister campaigned and raised funding for, is currently situated in a private hospital in London because it would get nowhere near an NHS hospital. That is the tragedy of the circumstances that we find ourselves in: our system is so restrictive that we cannot look for new innovations within our NHS.
I do not want to detain the House too long. I just want to put on record my admiration for my hon. Friend the Member for Edinburgh South West (Dr Arthur) in guiding the Bill to this point and now hopefully forward—with a former Member of this House, Julie Elliott, now Baroness Elliott, in the House of Lords. When I met my hon. Friend to berate him about why he should take up this issue, I did not know about his father-in-law, but I have to say how proud his family must be of what he has done here. I mention that point because it is a motivator for all of us. When we understand the true desperation of facing these problems, it can often be the driver to make us work harder for achievement.
I am delighted to say that 10 days ago, with the kindness of Mr Speaker, we launched the first glioblastoma drug trial in memory of my late sister. It will be run by Dr Paul Mulholland, who is, regrettably, too well known to many Members. He is Europe’s leading consultant on glioblastoma, based out of University College London, and the trial will include 16 patients at University College hospital who are newly diagnosed. They will have had no treatment and no surgery, and will be treated with immunotherapy. We are excited and delighted by the trial. It opened last Friday and Dr Mulholland met the first recruit last Monday.
This could be the start of great things, but it is the start of a journey. It is a journey that is incomprehensibly difficult and requires a wonderful set of circumstances: Europe’s leading consultant at a big teaching hospital in London, next to a world-leading university; a group of my sister’s friends who campaigned tirelessly to raise funds, raising over £1 million in the last year—the trial will cost something in that order; and a Secretary of State for Health and Social Care who gave us excellent support and intervened to help us to get to the point of starting the trial.
Those efforts are not available to everybody. We need to change things to get more trials. Without trials, there will be no progress, and I know from my own experience that there will be no progress, even with this brilliant Bill, unless we all, as Members, insist on progress and keep an eye on it. I am so thrilled that so many people, on the Labour Benches and in all parties across the House, are united in their commitment to see progress on glioblastoma. We want to see hope not only for glioblastoma victims but for the victims of all rare cancers. By starting with glioblastoma, we start with the worst. We will not cease our campaign until everybody has a fair chance of a cure.
Harpreet Uppal (Huddersfield) (Lab)
There have already been some emotional speeches, which are already making me cry. I thank everyone who has spoken today. I thank my hon. Friend the Member for Edinburgh South West (Dr Arthur) for introducing this important Bill. [Interruption.] I have started crying already. The Bill is particularly important to me, because my mum died of a brain tumour. Too many families face a diagnosis that often comes too late, with limited access to specialised care and clinical trials.
Does my hon. Friend agree that the Bill’s mechanism relating to orphan drugs is essential? Unless we can get the pharmaceutical industry to find it in its financial interest to start trials, we will not make any progress.
Harpreet Uppal
I thank my hon. Friend for her intervention. I agree with everything she said.
There is no doubt that, for patients and their families, an additional challenge of a rare cancer is navigating the systems themselves, many of which are not built with rare cancers in mind. I know from conversations with residents and organisations in Huddersfield just how isolating that can be. Being told that you have a rare form of cancer, and struggling to get answers or the standard of treatment that others receive, is really difficult. This Bill will play a part in extending the lives of people facing cancer, and it will help their families. Getting targeted research and clear care pathways will be really important, and I have no doubt that improving patient recruitment into clinical trials for rare cancers will mean so much to those families.
Again, I thank my hon. Friend the Member for Edinburgh South West, as well as the Ministers, my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh), and all the charities that have pushed this Bill forward.
(7 months, 2 weeks ago)
Commons ChamberWhen we talk about children’s health, we often think about the start of life—safe births, vaccinations and early years support—but we also need to talk about those children whose lives will be short, those with life-limiting and life-threatening conditions. Across the country, families caring for a seriously ill child face unimaginable challenges, yet too often the support they need simply is not there, especially at the end of life and especially at home.
In my constituency, we are incredibly fortunate to be served by Shooting Star Children’s Hospices, which supports over 700 children and families across 14 boroughs and throughout Surrey. However, because the number of children needing that care in each individual borough is small, those children can easily be overlooked. That is the problem with a system built around commissioning at such a local level: when the numbers are low, the needs get lost. That is why the ringfenced central funding—formerly the children’s hospice grant—is so important. It supports hospices such as Shooting Star to provide respite, symptom management, bereavement support and end-of-life care, and helps give families choice at the hardest possible time. I welcome the Government’s decision to confirm £26 million for children’s hospices in NHS England’s funding for 2025-26, alongside £100 million in capital investment across all hospices.
The truth is that the sector remains under real strain. According to Together for Short Lives, the leading voice for children’s palliative care, just 19% of ICBs formally commission 24/7 end-of-life care at home, and a third are still failing to meet even the basic national standards. I have three questions for the Minister: will the Government commit to maintaining and increasing the children’s hospice grant beyond 2025-26? Will they launch a proper review of how children’s palliative care is funded and planned, and will the Minister hold ICBs to greater account to ensure they meet their legal duty to commission that care and report transparently on progress? We are told that the 10-year NHS plan will bring care closer to home, but right now, there is no mention of children’s palliative care in that plan and no clarity on how those vital services will be funded. That has to change.
(7 months, 3 weeks ago)
Public Bill CommitteesDoes the Minister agree that keeping a list of people with rare cancers is only any use as long as there are some drug trials? Last night we launched a first trial, in my sister’s memory, for glioblastoma, with every penny raised by people donating, holding bake sales and running marathons. Is that any way to tackle rare cancer?
I congratulate my hon. Friend on the launch of the trial in her sister’s name. We do want to see more research and trials coming forward, particularly for rare cancers. She will be aware of the consortium that the Department has developed to work directly with the brain tumour community in particular, to improve the quality and number of research trials that come forward for funding.
(8 months ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
Several hon. Members rose—
Order. I remind Members to bob if they wish to be called. I ask for some self-restraint, with speeches restricted to six or seven minutes, so that we can get everybody in.
Martin Wrigley
I thank the Minister for the intervention. I am not quite sure what the protocol is; I do not think that that has ever happened. This is a most fantastic debate.
Capital investment in GP practices and buildings is welcome, but we have heard from across the Chamber that we need more. The problems with ICBs and the difficulties with trusts that are in NHS oversight framework segment 4 still impact GPs and how their funding works.
I will push my luck, because the Minister has been very generous with his time and very patient with us all: will he meet me and some practice managers to talk about the complexities of managing the practices with such a level of complication in funding, and to see whether the Government can identify further ways of making it easier to run these businesses, so that they can get on with delivering what they are there to deliver: healthcare for the greatest number of people with the maximum possible benefit? That would be helpful. I thank all hon. Members for their contributions.
I respectfully say to Members that, while I do not have the power to stop interventions from people who turn up 45 minutes, an hour, or an hour and three quarters into a debate, speaking on a personal level—I am not the most formal of Chairs—I think it very impolite to make an intervention when you have not had the opportunity to hear from other Members. I do not have the power to enforce that, but if I could, I would.
Question put and agreed to.
Resolved,
That this House has considered GP funding in the south-west.
(8 months, 2 weeks ago)
Commons ChamberI rise to speak to amendment 12, which stands in my name. I want to be clear that a decision on amendment 12 would not be a vote for or against assisted dying. The amendment is about preventing any Government of any political persuasion from rewriting the very purpose of the NHS, using a small group of MPs in a Committee Room rather than debate on the Floor of the House. The amendment seeks to protect the foundational document of our NHS and ensure that any changes to it are properly debated in open Parliament, as the public should expect. Let me explain why that matters.
In Committee, clause 38 was added to the Bill. The clause gives a future Secretary of State sweeping powers to amend existing health law through delegated legislation. Subsection (4) allows a future Government to change the very purpose of the NHS by amending section 1 of the National Health Service Act 2006.
Antonia Bance (Tipton and Wednesbury) (Lab)
My hon. Friend is setting out her concerns eloquently. What concerns does she have that the Bill writes a blank cheque for a future Health Secretary to change the nature of the NHS without parliamentary scrutiny?
That is the whole purpose of my amendment and my speech. Section 1 of the 2006 Act is the legal foundation on which every NHS duty rests, guaranteeing that our NHS will serve everyone, always. The section, which expresses the promise of
“a comprehensive health service designed to secure improvement…in the physical and mental health of the people of England”,
has remained virtually unchanged since 1946. Those words, spoken by Nye Bevan and enshrined in law, set out the purpose of the NHS: a national health service free at the point of delivery.
Andrew Pakes
I did use the facilities, Madam Deputy Speaker; I apologise for that. I am a gentleman of an age. [Laughter.]
I thank my hon. Friend for taking an intervention. We are about to reach the 80th anniversary of the landslide 1945 Labour Government, which set the NHS in train, and the 77th anniversary of the NHS. Fundamental to that is her point about the NHS being free at the point of need and being about care, compassion and life. What assessment has she made of how the Bill, if it goes through unamended, will fundamentally challenge that great victory and legacy that Labour Members cherish?
The power to alter the intentions, as mentioned by my hon. Friend, was not in the Bill we voted for in November. That is why I have tabled my amendment: to prevent anyone from tampering with the NHS as founded by our forefathers.
Let us be clear about what clause 38 would allow. It would allow a Minister, through delegated legislation, to rewrite the very purpose of our NHS; it would let them do so without the full scrutiny that primary legislation demands; and it would mean that Parliament could be denied any real chance to amend or reject that change. These are not abstract constitutional concerns; this is about whether the founding promise of the NHS can be quietly rewritten—not through open debate or an Act of Parliament, but by a handful of MPs behind closed doors in a Committee room. Once that pass is sold, there is no telling what future Governments might do or undo.
That is why this matters so deeply, because the NHS is not just a set of services, but a promise—a promise made right here in this House nearly 80 years ago, on Second Reading of the National Health Service Act 1946.
Ms Billington
It is important for my hon. Friend to be able to explain in detail what the philosophical and institutional implications are. But, fundamentally for ordinary patients, what does she think the Bill will do to change the relationship between the patient and the doctor?
Its potential is to alter everything in a very undemocratic manner. In this very Chamber, Nye Bevan told us that the NHS would
“lift the shadow from millions of homes...keep very many people alive who might otherwise be dead...relieve suffering...produce higher standards for the medical profession”
and
“be a great contribution towards the wellbeing of the common people”.—[Official Report, 30 April 1946; Vol. 422, c. 63.]
We have a duty in this place to defend that promise. We cannot allow the promise to be reworded without the full voice of Parliament. We owe it to the public, to patients and to the NHS staff who dedicate their lives to this service, to stand firm and protect what is sacred.
The amendment is simple but its impact is profound. It would ensure that any future changes to the core principles of the NHS must be debated openly, transparently and with the full consent of every Member—no short cuts, no sidestepping, no ministerial overreach. I urge colleagues across the House to support amendment 12, to stand with our NHS and with the people it serves. I urge my side—the Labour side—not to allow the assisted dying Bill to be the trojan horse that breaks the NHS, the proudest institution and the proudest measure introduced by our party in 120 years.
Calum Miller (Bicester and Woodstock) (LD)
I rise to speak in support of amendments 21, 103, 104 and 42, tabled by my hon. Friend the Member for Twickenham (Munira Wilson), the hon. Member for Newcastle-under-Lyme (Adam Jogee) and my hon. Friend the Member for Wimbledon (Mr Kohler). As other Members have said, this is a deeply consequential Bill. I want to record my thanks to the hon. Member for Spen Valley (Kim Leadbeater), to all members of the Bill Committee, and to all those who have contributed to its careful scrutiny through the tabling of amendments and debates over them.
The Bill is about the end of life. It is an emotive and sometimes painful topic, and I am grateful to the many constituents who have generously shared with me their experiences and opinions. I have also taken some time to consult palliative care practitioners, including those providing hospice care in my constituency. Those conversations reinforced the awe and admiration I hold for these caring professionals. Their expertise and deep commitment are always impressive. Contrary to the points made by the hon. Member for Gosport (Dame Caroline Dinenage), they are adamant that they can provide sufficient pain relief to the vast majority of those receiving end-of-life care. The issue is about not the efficacy of treatment, but access to it. In this, I echo the powerful points of the hon. Member for East Renfrewshire (Blair McDougall) on the present inequality of access to palliative care.
Amendment 21 would ensure that the availability, quality and distribution of palliative and end-of-life care is published within one year of the Act being passed. When assessing the provision of end-of-life care, it is critical that this House and the public can see how palliative care is being delivered. For the measures in the Bill to provide a genuine choice to those at end of life, palliative care must be much more widely available.
The hon. Member for Spen Valley (Kim Leadbeater) argues that there should be no false choice between palliative care and assisted dying, yet she and health Ministers know that there is a choice as resources are limited. When so many hospices have closed beds due to funding shortages and receive more than 70% of their funding from donations, I am concerned that we may see significant expenditures on a new regime for assisted dying, funded by the state as a health treatment, while the palliative care sector and hospices in particular remain chronically underfunded.