Advanced Brain Cancer: Tissue Freezing

Monica Harding Excerpts

Wednesday 7th January 2026 Westminster Hall

[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.

--- Later in debate ---

[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.

--- Later in debate ---

[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?