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Chris Evans (Caerphilly) (Lab/Co-op)
I beg to move,
That this House has considered patient access to tissue freezing for advanced brain cancer treatment, diagnostics and research.
It is a pleasure to serve under your chairmanship, Mr Western—you look remarkably like the man I had breakfast with 45 minutes ago.
I am pleased that this topic is getting the attention it deserves, and I am grateful to open this important debate, especially ahead of Less Survivable Cancers Awareness Week, which begins on 13 January. I must confess I knew relatively little about the effects of brain cancer until I met my constituent, Ellie James. Ellie has travelled from Wales today and is in the Gallery. I admire how tirelessly she has campaigned in memory of her late husband, Owain, who has brought us all here today.
Owain passed away from glioblastoma, the most common type of malignant brain tumour in adults, in June 2024. He was just 34 years of age. Since then Ellie has been campaigning for what she calls Owain’s law to be implemented in this country. Owain was young, fit and healthy, and he had his whole life ahead of him. He leaves behind a family, including a young daughter. Owain’s story highlights the importance of informed consent from patients and their families regarding treatment and the storage of their brain tissue.
Owain was diagnosed with a brain tumour in September 2022. Half of Owain’s 14 cm tumour was surgically removed, but only 1 cm of the removed tissue was stored fresh or flash frozen. The 1 cm was used to treat Owain with a form of immunotherapy treatment that requires the patient’s frozen tissue. Owain received three rounds of the vaccine before the frozen tissue ran out, at which point further surgery was not considered possible. The remaining 6 cm of tissue was stored in paraffin, making it unsuitable for additional vaccines.
Owain died a few months later, despite his cancer showing signs of regression during the treatment. If all the removed tissue had been fresh frozen, around 30 vaccines could have been created. If Owain and his family had been more informed about the practices surrounding brain tissue freezing and storage, and if the hospital had chosen the flash-freezing method for all the removed tissue instead of keeping it in paraffin, Owain could still be with us. His story is truly devastating, but what most stood out to me was that there was a real, achievable potential to extend, if not save, his life.
The amount of grief that Ellie and Owain’s family face must be tremendous and unimaginable. However, out of grief great change can take place, and I pay tribute to Ellie for her determination to turn her unimaginable grief into something positive that can help others. There is currently no consistent national guidance or sufficient infrastructure to ensure that brain tumour tissue removed during surgery can be stored in the fresh frozen state required for advanced therapies such as immunotherapy and cancer research. It is fundamentally wrong that Owain and his family learned of the small proportion of tissue initially frozen only once the vaccines ran out. I am sure they are not the only people that that will have happened to.
For every patient diagnosed with a less survivable cancer, the average one-year survival rate is 42%. That is compared with a one-year survival rate of 70% for all cancers. Those statistics need to improve. There are procedures surrounding brain tissue freezing that can be changed, which would have an undeniably positive impact on survival rates. There are already groups doing research and drawing attention to what can be done to improve outcomes for people with cancer, such as the all-party parliamentary group on the less survivable cancers. There are also charities such as Cancer Research UK and Macmillan that conduct valuable research and support cancer patients and their families. Again, I pay tribute to them.
There are, however, specific recommendations that I would like to mention, which link specifically to Owain and many others who face similar situations. The NHS needs an appropriate number of medical freezers to store fresh frozen tissue. In many cases, there is not enough freezer space to facilitate this type of brain tissue freezing. That must change. That long-term investment would save lives.
Monica Harding (Esher and Walton) (LD)
Brain cancer is one of the deadliest cancers, and it disproportionately affects young adults: it is the big cancer killer of people under 40. Does the hon. Gentleman agree that this proposal not only would save lives at a relatively small cost but has an economic benefit? The Brain Tumour Charity points out that most people diagnosed have to give up work, and so do their carers: 70% of carers also have to give up work to look after those afflicted. There is an economic benefit to doing this, at a relatively low cost, and of course it would save lives.
Chris Evans
The hon. Lady is absolutely right. We have to remember that a cancer diagnosis affects not just the person, but their family and loved ones. A lot of people have to leave work to care for those people, and they have to deal with the emotional impact too. Her economic point is absolutely right. The wider point is that we lead the world in life sciences. If we did what I am suggesting, we could be a world leader in brain cancer care and we could save lives too, so it is a win-win for everybody.
As the hon. Lady said, the change is cost effective. It is estimated that it would cost £250,000 to £400,000 to ensure that all NHS trusts have the necessary capacity and capabilities for flash freezing. Every brain cancer patient should be able to access the latest treatment and research and the most accurate genome-sequencing techniques.
In Owain’s case, there was enough freezer space, so storing his tissue in paraffin was a conscious decision not made out of necessity. That is why attitudes and established guidance protocols within the NHS about brain tissue freezing need to change. It should not be the norm to store removed brain tissue in something that makes it unusable for further research or treatment. I hope the Minister will commit to establishing national standards so that every suitable brain tumour sample is routinely frozen.
A brain tumour can happen to anyone. It could affect us or any of our loved ones. This change needs to happen now to save lives in the future. It needs to happen for people such as Owain who are no longer with us, for people who are currently unwell with brain cancer and for people who will unfortunately become ill in the future. This Labour Government have a real opportunity to enact meaningful, positive and feasible change. We must seize that, especially if it is achievable and affordable.
As I said earlier, we lead the world in life sciences, and brain cancer care is something that we can proudly be world leaders in. The national cancer plan, which will be published next month, must address the storage of brain tissue. Specifically, it must outline exactly how it will improve outcomes for patients with less survivable cancers. If we are serious about putting patients at the heart of cancer care, improving their awareness of the storage of their own tissue is one of the simplest places to start.
The way that treatment is allocated is deeply unfair. The postcode lottery of cancer treatment must end. It is wrong that a person’s ability to access cancer treatment is dependent on where they live: 40% of people with cancer in the UK have struggled to access treatment or care because of where they live. That is ineffective, unfair and discriminatory. Those are not the values that a Labour Government should uphold. For the cost of a few hundred thousand pounds, we could eliminate the postcode lottery that affects brain cancer patients. We need to ensure that all types of treatment, including experimental ones involving freezers and vaccines, can succeed in all areas, not only some. That exceptionally small investment could have a lifesaving impact.
It is not only treatment that is affected by current protocol, but research. Owain’s tissue was no longer suitable for research because it was stored in paraffin. It is also incredibly difficult for a person to have control over their own tissue post extraction. The confusion about who technically owns it makes it challenging for people such as Ellie to retrieve the remaining tissue for further testing or research. We need to stop putting unnecessary barriers in place. We are making things harder than they need to be, and these practices have a direct impact on people’s everyday lives.
It is just as alarming that all this is done without informed consent from the patient or their families. The importance of the storage method for brain tissue cannot be overstated when someone’s life relies upon it. Brain cancer patients and their families should have an absolute right to be consulted on and to give informed consent on how their tumour is stored. While we have the opportunity to make these changes in the national cancer plan for England, we must do so. It is a small, affordable change that could have a huge impact and improve cancer treatment nationwide.
This issue was debated in the Welsh Senedd in July, and I wonder if the Minister could liaise with the Welsh Government about introducing a similar plan. I understand that the Minister there said he was not minded to introduce legislation. Could she raise this topic with him in bilateral meetings at some point? I was also hoping to get a commitment from the Minister today to meet me and my constituent Ellie, so that Ellie can explain in detail her husband Owain’s experience and we can discuss how to prevent the same thing happening to current and future patients.
In matters of great importance like this, patients must be aware of what is happening to their tissue during treatment and afterwards. Families should be able to access their tissue if needed for future testing and research. I urge the Minister to think of real people like Owain, Ellie and their young daughter, whose lives could be so different now if patients were consulted, if the tissue was stored differently and if there were more medical freezers. I would specifically like to know the Government’s plans regarding brain tissue freezing, given the impact it would have on diagnostics, treatment and research. Do the Government plan to invest in freezer capacity, and do they intend to make flash freezing the norm?
While brain tumours will continue to happen to people like Owain or anyone in this room, diagnostics, treatment and research can get better. The Government can lead the way and begin to change the attitudes and practices surrounding brain tissue freezing—in fact, we must do so. I do not wish to hear another story like Owain and Ellie’s, which is absolutely tragic, and I want Ellie’s campaign to succeed; it can and must. The most devastating thing is that Owain’s outcomes could have been different if the established guidance protocol had been different. Perhaps if these things had happened, Owain could have been sitting with Ellie in the Public Gallery today.
Several hon. Members rose—
Matt Western (in the Chair)
I remind Members that if they wish to be called in the debate, they should bob.
Charlie Maynard (Witney) (LD)
It is a pleasure to serve under your chairmanship, Mr Western. I thank the hon. Member for Caerphilly (Chris Evans) for securing the debate, and I thank Ellie for all her work, as well as Hugh and the others who are pushing very hard on this issue—many thanks indeed.
I want to try to make this debate a bit broader in two directions. My sister, Georgie, also has a glioblastoma. She was diagnosed two and a half years ago and has been incredibly brave and determined, working with the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh) and Ellie to try to get more brain cancer justice, and driving that debate. That also applies to many people in my constituency of Witney who have brain tumours but also tumours of all sorts of cancers.
We ought to be considering two things. First, I ask the Minister to consider making tumour tissue freezing standard for all cancerous tumour tissues, not just brain. However close the issue is to my heart, I think it is inequitable to just focus on brain tumours. We have to try to get all tumour tissues frozen as standard, and the economies of scale mean that makes sense.
The other thing is how we have equitable and public health-oriented access to that tissue once it is stored, which we as a country are massively failing on. I ask the Minister to consider reforming the Human Tissue Act 2004, which could be broadened in terms of what is legally permitted in research contexts. That would create explicit legal pathways for retrospective clinical samples.
First, clinical tissue, such as biopsies and diagnostic archives, could be routinely made available for public health research under clear safeguards, without requiring separate project-by-project consent. Secondly, requirements for de-identified tissue could be simplified, clarifying that truly anonymised, non-identifiable samples can be used without consent or an HTA licence for a wider range of research, rather than just narrowly defined exceptions.
Thirdly, licences could be converted to broader authorisations. Instead of a licence for each tissue bank, accredited biobanks could be allowed to supply samples under nationally recognised frameworks. Fourthly, DNA analysis rules could be reworked. Barriers to genomic public health research could be reduced by redefining or narrowing the offence of having tissue for DNA analysis, provided that strong data protection is ensured. That is one big chunk.
The second big chunk I am asking for—there are only two—is that we reform the Human Tissue Act 2004 to apply a default system similar to the one we now use nationally for organ donation to tumour tissue data. To do so, Parliament would need to amend the HTA to introduce a deemed consent regime for residual tumour tissue and derived data. That would be limited to public interest cancer research, with a statutory and simple opt-out, strict purpose limits and enhanced oversight by the Human Tissue Authority.
The model would mirror the Organ Donation (Deemed Consent) Act 2019, but apply just to data derived primarily from tumour tissue. In plain English, that means that we have something that works for organ donations and saves lives day in, day out. If any of us die, our organs are taken and our next of kin can opt out if they choose. The great majority of people do not opt out. That has meant that many more organs have been available, which has saved lives. Somebody may want to dispose of their tumour tissue, but the great majority of us do not; we would want it used for public health and science, so having it as an automatic—
Monica Harding
I am sorry to stop my hon. Friend mid flow, because that is a really interesting concept. I draw his attention to a BBC article from today about using centuries-old samples of tumours from bowel cancer to work out why there is such a massive increase in bowel cancer among young people. I do not understand the science of it, but surely that is a step forward for our research as well.
Charlie Maynard
My hon. Friend speaks to the point. Of course, those people have been dead for many centuries, but we believe it is worth being able to access that information, and at the moment it is not accessible in most cases. That is something we really want to change.
I look to Denmark’s registry-first legal architecture, with mandatory health registries covering cancer diagnoses, pathology, genomics, and treatment and outcomes. The Danish cancer registry automatically records tumour data, covers the entire population and is used for research, oversight and quality improvement. Participation is automatic, with opt-outs rather than being consent-based. Our Government are seeking to rapidly expand our national genomics capabilities, and I applaud them for that, but without far better and more sensible access to the base tissue, with appropriate safeguards, there is no genomics-based, population-wide health service.
Dame Siobhain McDonagh (Mitcham and Morden) (Lab)
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?
Dame Siobhain McDonagh
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.
Mr Gregory Campbell (East Londonderry) (DUP)
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?
Dame Siobhain McDonagh
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?
Dame Siobhain McDonagh
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?
Jim Shannon (Strangford) (DUP)
It is a pleasure to serve under your chairship, Mr Western. I thank the hon. Member for Caerphilly (Chris Evans) for setting the scene so incredibly well, and the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh) for all that she does—I was impressed by her contribution yesterday, and she equalled it today.
I think we all know someone who has been touched by cancer. The youngest daughter of a close friend of mine was diagnosed with glioblastoma last Christmas, and she died a few weeks later. At that time, the diagnosis was bleak, and the lives of my friend and his wife were changed forever. Bleak does not even come close to the sense of loss.
Mr Campbell
I have personal experience of a very young constituent who lost her father for the exact same reason. The trauma affects not just the immediate family, but close friends too, and it lives with them for years. Hopefully, we can see some progress both today and in the next few weeks, whenever the cancer issue is addressed in the main Chamber.
Jim Shannon
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—
Dame Siobhain McDonagh
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.
Jim Shannon
We are both soft-hearted, as many other Members in this Chamber probably are.
This man was so strong. When his wee daughter died, life became very focused on that; it will be always focused on that. I can understand how Owain’s law has come about, because families are determined to ensure that their devastation is not replicated, if one single thing can be done to prevent it. I thank those in the Public Gallery for being here.
What can we do? Owain’s law is an indication of what we can do. Tissue freezing preserves DNA. Without this key, simple and cost-effective step, patients cannot access the latest cancer treatments, diagnostics and research. There is a way forward.
As the Minister knows, I am always pleased to see her in her place. We are all very fond of her, and she understands things better than most—we all know the circumstances. I am looking forward to her response to the ask from the hon. Member for Caerphilly and from everyone else. To help end this preventable postcode lottery, hon. Members should please consider entering the current ballot for Health and Social Care questions, which closes today. If they can get their question in before noon today, that would be good. Next week, they would then have an opportunity to ask it on the Floor of the House, to help prevent more brain cancer patients in our constituencies from missing out.
In the NHS, most brain cancer patient samples are stored in paraffin wax rather than being flash frozen in medical freezers. When this happens, patients lose access to potentially lifesaving newer treatments developed using these samples, to more precise diagnostic methods and to advanced research, including future testing to find out whether a patient’s condition is genetic and likely to be passed on to their children. That is important in the lives we lead. Some conditions are hereditary; they come from our mum or dad—maybe our grandparents—down to us, and may pass on to those who come after us.
I thank Ellie’s campaign for giving me their paper before the debate, as it really does help us to understand things just that wee bit better. I know that the Minister has seen it and the three questions to her, so I do not need to repeat them—she is probably very aware of what they are. Those are the campaign’s requests.
I have a couple of requests of my own, which will not come as a surprise to anyone in the Chamber, and certainly not to the Minister. New research from the Tessa Jowell Brain Cancer Mission shows that access to tissue freezing varies dramatically between trusts, meaning that eligibility for advanced treatments can depend entirely on where a patient lives. A postcode lottery is preventing my constituents in Strangford in Northern Ireland from benefiting from more precise whole genome sequencing, personalised immunotherapy and cutting-edge diagnostic options. My constituents are not the only ones affected—everyone is affected.
I have received information indicating that, for just £250,000 to £400,000, every brain cancer patient in the UK could have routine access to tissue freezing by default, unlocking the treatments the Government have committed to delivering. The three questions from the Owain’s law campaign are the important ones, but can the Minister look at this issue? When we think about what we are trying to achieve in this debate, it is important that we have some goals. I know that the Minister always replies helpfully and positively to us.
In Northern Ireland, funding for freezing brain tissue is primarily tied to research initiatives rather than standard patient care. A local charity called Brainwaves NI is currently funding a pilot scheme at the Belfast health and social care trust and Queen’s University Belfast, which uses rapid nanopore sequencing. I do not pretend to understand what all these things are—I am not a medical person, just an MP who tries to represent his constituents when he can. That process requires specialised tissue handling, often involving freezing, to reduce diagnosis times from weeks to hours.
It is clear from all the contributions to the debate, including from those who have personal knowledge, that we do not need pilots but more equitable access to tissue freezing throughout the United Kingdom. I support the calls the hon. Member for Caerphilly has made so well on behalf of his constituents and indeed all the United Kingdom. Glioblastoma is a death sentence, but tissue freezing could change that. It is right and proper that we do all we can to see that change in all of the United Kingdom.
My last request is that the Minister liaise with the regional Administrations in Scotland and Wales, and particularly with the Administration in Northern Ireland and with the Assembly. Brain cancer affects us all; it does not stop at the border of Scotland and England or in the Irish sea. It is all of us together, so we need to work together to find a way of funding a cure for advanced brain cancer. With that, I look forward very much to the Minister’s response.
Mr Jonathan Brash (Hartlepool) (Lab)
It is a pleasure to serve under your chairmanship, Mr Western. I start by saying how honoured I am to follow the hon. Member for Strangford (Jim Shannon), who demonstrates so ably that the high-minded ideals of representation, compassion and decency run right through this place, and perhaps more often than is fully recognised. I thank him for his contribution.
I also thank my hon. Friend the Member for Caerphilly (Chris Evans) for securing this important debate, and his constituent Ellie for her campaigning—I can say without hesitation that you have another signed-up supporter of Owain’s law here today in me. As my hon. Friend demonstrated, MPs do not generally come to these debates to have abstract policy discussions, but to do our most important job: to be the voice of our constituents.
That is where I want to start. I want to share the experience of my constituent, Samantha Jones, who came to see me alongside her father-in-law, Garry Jones, following the death of her husband, Trevor, from glioblastoma. Trevor was just 41 years old when he suddenly became ill on Christmas Day 2024. Until that moment, there had been no warning signs and no symptoms that anyone could reasonably have recognised. Tests revealed stage 4 glioblastoma, and he was given six months to live. He lived for nine months and died in September 2025.
Like so many families confronted with this diagnosis, they were plunged into a world of shock, fear and urgent decision making. A biopsy was taken, which confirmed and sequenced the cancer, and at that point the family believed that everything possible was being done. It was only later, through Samantha’s own research and through conversations with an oncologist experienced in international practice, that they learned something that they found deeply troubling. There were treatments that may have been available to Trevor on the basis of his biopsy, but they could not be used because the tissue sample had not been flash frozen. Instead, the biopsy had been stored in paraffin blocks, which is standard practice in much of the UK, as we heard from my hon. Friend the Member for Caerphilly. By the time the family discovered the significance of that, it was too late: Trevor was too ill to undergo another biopsy, too unwell to travel and unable to take part in clinical trials.
Samantha told me that in Germany brain tumour biopsies are flash frozen as a matter of course. That allows for far more advanced genomic and molecular testing, which can open the door to a wider range of treatments. In the UK, by contrast, flash freezing is done only if it is specifically requested, or if the patient is part of a clinical trial. For families who have just been told that their loved one has an aggressive and terminal brain cancer, that is not a realistic expectation. They are in shock. They are terrified. They are placing their trust in the system to do everything that it can, without knowing that one unmade request could close off future options entirely.
That raises a simple but profound question, which I put to the Minister: why does the NHS not routinely flash freeze all brain tumour biopsies as standard practice? What can we do to change that here and now? I am not suggesting false hope. I fully recognise that glioblastoma remains a devastating diagnosis with limited treatment options, but when options are already so few, it cannot be right that patients are denied even the possibility of certain treatments because of how their tissue samples were stored.
This is also an issue of fairness and equality. Access to the best possible diagnostics and research pathways should not depend on geography, chance or whether a family happen to know the right question to ask at the worst moment in their lives. Samantha and Garry came to see me not only in grief but with a determination—one reflected by Ellie, in the Public Gallery this morning—that something good might come from their devastating experience. They want other families to be spared the same sense of missed opportunity and unanswered questions.
More broadly, brain cancers remain under-recognised and underfunded compared with other forms of cancer, despite their severity and poor outcomes. If we are serious about improving survival, treatment and research, we must be willing to look honestly at current practice and ask whether it is good enough, because I think the consensus is that it is not.
I hope that the Minister will engage constructively on this issue and consider making the flash freezing of brain tumour biopsies standard practice across the NHS, because that could improve patient access to treatment, strengthen research and offer families reassurance that everything possible is being done. For Trevor, such a change has come too late, but for future patients it does not have to.
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?
Dame Siobhain McDonagh
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.
Helen Maguire (Epsom and Ewell) (LD)
It is a pleasure to serve under your chairship, Mr Western. I thank the hon. Member for Caerphilly (Chris Evans) for securing this very important debate on equitable access to tissue freezing for brain cancer patients.
My constituent’s son was first diagnosed at the age of 10 with a very rare brain tumour. When he should have been playing with friends and going to school, he underwent surgery and intense radiotherapy. After treatment, he returned to normality, but 13 years later the tumour recurred and he received the same treatment. Earlier this year, when he was 28 years old, and just three and a half years after his last treatment, the tumour was back again. Further radiotherapy was not safe, so he underwent six months of chemotherapy. His mum told me about the devastation of undergoing chemotherapy, knowing that it was never going to be a cure and that the tumour is expected to recur. In the 18 years that he has been living with the diagnosis and undergoing treatment, there has been no progress in treatment options, and a cure has not been found. Sadly, my constituent’s son is not alone; every year, 13,000 people are diagnosed with this brutal condition.
Like many people, I was struck by the story of Owain, who was diagnosed with a 14 cm grade 4 brain tumour in his right frontal lobe. Similar to my constituent’s son, Owain was told that the standard treatment of radiotherapy and chemotherapy could only hold the tumour back for a period of time, until he sadly died.
Owain’s campaign is now run in his memory by his brilliant wife Ellie, who is here today in the Public Gallery. The campaign has exposed the lack of communication, clarity and consistency in brain tissue freezing. Fresh tissue freezing can help to deliver personalised treatment, research and diagnostics, but across the country there is unequal access to it. Brain cancers are difficult enough to tackle. Even when tumours are surgically removed, cancer cells have already infiltrated the brain, often causing a tumour to regrow, sometimes within just a few months.
We know that current drug treatments struggle to have an impact on tumour mass and that radiotherapy can only delay recurrence. Consistent access to brain tumour storage across the country could help to save future lives and improve outcomes for existing patients. A recent study by specialists from the department of neurosurgery at King’s College hospital and Guy’s cancer centre aims to implement a robust pathway whereby tumour tissue can be stored as a fresh frozen sample. Their report concluded that although the implementation of this pathway appeared to be straightforward, the limiting factor was the need for a fridge. There were also difficulties in liaising with the multiple teams involved, which was very time consuming, and disagreements about who should fund the freezer.
Such concerns have been reflected by the charity Brain Tumour Research, which highlighted the variations in the basic infrastructure needed to support brain tissue freezing. The Tessa Jowell Brain Cancer Mission has also noted the numerous barriers to genome sequencing, which requires tissue freezing to enable precise diagnosis, prognosis and tailored treatments.
Therefore, we are not struggling with unknown barriers. The solutions are right in front of us. When battling brain cancer, every day counts. Because of the lack of communication with Owain, there was not enough tissue frozen appropriately to create the vaccines needed to help tackle his tumour. Now his young daughter Amelia must grapple with life without dad.
The Government have an opportunity to finally make a real difference to the thousands of people affected by brain cancer, by ending the postcode lottery of cancer treatments. The Conservatives spent 14 years failing to make any progress on improving cancer outcomes, and now it is time for action. The Liberal Democrats urge the Government to pay close attention to the specific difficulties facing brain cancer patients in the delayed national cancer plan. This includes setting out tangible improvements for brain cancer patients and equitable access to tissue freezing. We also cannot ignore that quick access to treatment saves lives, which is why I once again call on the Government to make sure that 100% of patients start treatment within 62 days of urgent referral.
There can be no more families torn apart, left in the dark or blocked from possible treatments. With the UK lagging severely behind our peers on cancer outcomes, it is time for this Government to turn around the Conservative Government’s failure to improve cancer outcomes, and finally to place the UK as a global leader in cancer research and outcomes.
Dr Caroline Johnson (Sleaford and North Hykeham) (Con)
It is a pleasure to serve under your chairmanship this morning, Mr Western. I thank the hon. Member for Caerphilly (Chris Evans) for securing this debate, and the cancer charities, including Brain Tumour Research and Brain Tumour Charity, who provide invaluable support to my constituents. I also thank Owain’s family for their important campaign. I want to recognise the contribution of the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh), who has shown such incredible energy and dedication to the cause over the last few years. It is impressive to get a trial up and running that offers real hope to people, so I thank her for that work.
Each year sees around 13,000 new cases of brain and central nervous system cancers and 5,500 deaths. As has been said already this morning, brain cancers are the leading cause of cancer-related death for those under the age of 40. As a doctor and a granddaughter, I have witnessed the devastation that brain cancers can exact on patients and their loved ones. Despite advances in detection, neurosurgery and radiotherapy, the mortality for brain cancers has barely changed since 2000, whereas the most common cancers have seen substantial decreases over the same period. Demographics are working against us. Epidemiological modelling indicates that a quarter of the growth in brain cancer cases can be attributed to population ageing, a pattern that is expected to continue in the coming decades.
Research published last year found that in England the median survival for patients with a glioblastoma was seven months. It rose to 16 months for patients with the most aggressive treatments. The reason those patients survived longer is because they had access to personalised treatments, experimental drugs or trial pathways, and much of that begins with tissue freezing. Two people can be diagnosed with glioblastoma, but their underlying genetics can be completely different. Frozen tissue enables a pathologist to undertake gold standard genomic sequencing, which not only leads to a more precise diagnosis, but helps doctors predict how a tumour is likely to behave, identify more personalised treatment strategies based on the genetic mutations driving the tumour, and determine whether the patient would be able to benefit from clinical trials that are available.
Unfortunately, as we have heard, access to genomic sequencing is characterised by stark geographic inequality. High volume specialist centres, typically in urban areas, are more likely to have established tissue freezing and integrated genomic diagnosis than centres serving more rural communities. A report by the Tessa Jowell Centre of Excellence found a nearly 300% increase in whole genome sequencing activity since 2021, and around three in 10 NHS centres within its network were still not requesting it. Among centres that do freeze tissue, the activity rates vary from zero samples to several hundred, and diagnostic times are worsening. The median time from tissue collection to final integrated molecular diagnosis in 2024 was 21 days, whereas the benchmark is 14 and only 30% met that. What does the Minister intend to do to improve that speed?
Tissue freezing is a basic requirement for advanced testing, but every year thousands of patients’ tissue samples are soaked in formaldehyde and embedded in wax blocks. Although formalin-fixed paraffin-embedded tissue preservation has been used in pathology labs since the early 20th century, it is not adequate for molecular work because it causes the cross-linking and fragmentation of nucleic acids and protein, meaning that any DNA or RNA that is extracted is degraded and often unsuitable for genomic sequencing and creating those important personalised cancer therapies. The British Neuro-Oncology Society has described FFPE as “suboptimal”. It results in patients being locked out of cutting-edge treatments, regardless of clinical suitability, with knock-on effects on patient outcomes and the pace of scientific research. Will the Minister explain why FFPE, rather than tissue freezing, is still determining access to personalised brain cancer treatment for some NHS patients?
The Government’s 10-year health plan anticipates that by 2035 half of all healthcare interactions will be informed by genomics. That is a bold mission, but the contributions to today’s debate show that there is a gap between where Ministers want to be and where we are at the moment. In response to a written parliamentary question, the Government acknowledged:
“Information on the number of NHS trusts in England that have facilities for fresh freezing brain cancer tissue samples is not currently collected.”
That is a serious problem, because without the data it is difficult for Members and cancer charities to ascertain whether progress is being made, and for the Minister to make progress on delivery. Will the Minister confirm whether her Department has plans to start collecting that information? If it does not, why not?
Patients should always be fully informed before they have treatment, and it has been disturbing to hear today that some have not been given all the information, particularly about what will happen to the tissue afterwards and the potential consequences of that. What are the Government doing to improve the consent process in such cases to ensure that, before the biopsy, patients are fully informed about what is happening to their tissue and are given the choice?
We have heard that sometimes only a small percentage of the tissue is frozen, limiting the treatment options available. Will the Minister tell us why that is the case, and what she is doing to improve the proportion that is frozen? Every trust taking brain cancer samples must have the capacity and facilities to freeze the tissue they obtain.
We are all waiting for the delayed cancer plan, which we expect to be published on World Cancer Day. I have said before that I think delaying it for presentational purposes is wrong, but I hope it will be published soon. Will the Minister confirm that the cancer plan will deliver fully informed consent, provide the necessary capability—both human resource and equipment—for freezing, and ensure that the research landscape improves, in terms of both ease of access and financial metrics, to encourage UK research investment?
Everyone in this House wants treatments to improve and a cure to be found. I know the Minister is hugely committed to this issue and is working hard on it. I am interested to hear her response and to see the cancer plan, which she has been working on, as soon as possible.
The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)
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.
Dame Siobhain McDonagh
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.
Ashley Dalton
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.
Jim Shannon
I thank the Minister for her comprehensive reply to all our questions. In my contribution, I mentioned that Queen’s University Belfast and the Belfast health and social care trust are doing a pilot scheme, which I hope will benefit England, Scotland and Wales. Can the Minister ask her Department’s civil servants to take that on board?
Ashley Dalton
I am happy to confirm that I will ask officials to look into that, and to give me some advice on that pilot and on having a conversation with those running it about what we could learn from them. I thank the hon. Member for raising that question.
I will close by paying tribute to our late colleague and Member of the Senedd, Hefin David. Through tireless campaigning, he brought Owain’s story to the Senedd. My hon. Friend the Member for Caerphilly has now brought it to this place and I thank him for that. I look forward to working with him and other hon. Members to make 2026 the year that we shift the dial for patients with brain cancer.
Chris Evans
In a debate where tears were shed, it was good to hear the Minister’s positive reply. I look forward to meeting with her and Ellie to discuss Owain’s case further. I pay tribute to my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) for her work on this issue. From a position of great grief, she has tried to bring about something good. I think that we can all endorse what she has been trying to do in her campaigns.
I am pleased that the Minister has committed to meeting with the devolved Administrations, because if one thing came out of this debate, it is that cancer is no respecter of age, where we live or boundaries. It affects everybody and we need a national effort to deal with it. I am pleased with the Minister’s response; I thought it was very positive. I look forward to working with her and all other hon. Members to provide the hope that we so desperately need in cases like these.
Question put and agreed to.
Resolved,
That this House has considered patient access to tissue freezing for advanced brain cancer treatment, diagnostics and research.