The speech made by Chris Evans, the Labour MP for Caerphilly, in Westminster Hall on 7 January 2026.
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.
