- 9:30 am
- 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.
- 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.
- 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.
- Several hon. Members rose—
- I remind Members that if they wish to be called in the debate, they should bob.
- 9:42 am
- 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.
- 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.
- 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.
- 9:48 am
- 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 2018, 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.
- 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.
- 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.
- 9:59 am
- 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.