Advanced Brain Cancer: Tissue Freezing

Siobhain McDonagh Excerpts

Wednesday 7th January 2026 Westminster Hall

[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?

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[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.

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[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.

[Matt Western (in the Chair)]

Thank you. Your point of order is noted.

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[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.