Advanced Brain Cancer: Tissue Freezing

Charlie Maynard Excerpts

Wednesday 7th January 2026 Westminster Hall

[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.

Less Survivable Cancers

Charlie Maynard Excerpts

Tuesday 6th January 2026 Westminster Hall

[Charlie Maynard (Witney) (LD)]

I thank my hon. Friend the Member for Wokingham (Clive Jones) for securing this fantastic debate. I also thank the Members in the room for all the work they have done, and the Minister for her engagement, particularly with the Brain Cancer Justice team. I really appreciate it.

My sister Georgie received a glioblastoma multiforme diagnosis two and a half years ago. She is well, has survived longer than they gave her and is fighting like hell for Brain Cancer Justice, alongside many in this room. I praise her and her colleagues, as well as so many people in my constituency in Witney who have helped her and who suffer with this range of cancers.

I will say only two things today. First, we should explore reforming the Human Tissue Act 2004 to apply to tumour tissue a default system similar to the one we now use nationally for organ donation. To do so, Parliament would need to amend the Act to introduce a deemed consent regime for residual tumour tissue and derived data, limited to public interest cancer research, with a statutory opt-out, strict purpose limits and enhanced oversight by the Human Tissue Authority. The model would mirror the Organ Donation (Deemed Consent) Act 2019, which means that if someone dies their organs are automatically taken, although people or their families can opt out. We are advocating the same for our tumour tissue. Very few of us really want to hang on to our tumour tissue if we are unfortunate enough to be in that situation, but that tumour tissue has huge scientific value and we should use the data as much as we can for the public good. Denmark is a fantastic model: it has a registry-first legal architecture with mandatory health registries covering cancer diagnosis, pathology, genomics, treatment and outcomes.

Secondly, we need to double the survival rates for all less survivable cancers in the next decade. If we put that mark in the sand as our goal, and it gets into the national cancer plan, it will draw global attention and will drag resources and talent to our cause and our country. It would be good for our country, good for our patients who are suffering, and good for our economy too. If we can make that a key demand of our national cancer plan, that will be a huge plus.

Budget Resolutions

Charlie Maynard Excerpts

Tuesday 2nd December 2025 Commons Chamber

[Blake Stephenson]

My hon. Friend is absolutely right—it makes it worse. The benefits of an increased minimum wage are meaningless for those who do not have a wage. We should be investing in a brighter future for young people, one of aspiration, hard work, investment and wealth. Only the Conservatives have a plan to do that, by bearing down on welfare spending, cutting taxes, and repealing every job-destroying, anti-business, anti-growth measure in the Employment Rights Bill. We will kick-start young people’s working lives with a £5,000 first jobs bonus.

[Charlie Maynard (Witney) (LD)]

Will the hon. Member give way?

[Blake Stephenson]

I have no time.

We will back young people to buy their first home. We will not stifle the chances of a good job, punish people with higher taxes when they do find employment, push graduates into higher student loan repayments or make it harder to save for retirement, which is what this Government are doing. The appeal of fleeing socialist Britain has never been more obvious, nor has it ever been so easy, and the exodus has already begun.

Access to NHS Dentistry

Charlie Maynard Excerpts

Thursday 22nd May 2025 Commons Chamber

[Claire Young (Thornbury and Yate) (LD)]

I thank the hon. Member for Great Grimsby and Cleethorpes (Melanie Onn) for introducing this debate.

Thornbury and Yate is a dental desert. According to a recent newspaper report, not a single dentist in Thornbury and Yate is taking on new NHS patients for the third year in a row, leaving people having to travel long distances for care, or forced to pay for private treatment. I am sure, as a fellow south-west MP, the Minister will be as concerned as I am to hear that in September 2024 the NHS dental activity delivery rate was lowest in the south-west, at 61.6%, compared to the highest in London, at 94.7%. Not surprisingly, in the south-west, around one in every 460 people had to be taken to A&E with a dental problem in 2023-24. That was substantially higher than in London, where the figure was only one in every 860 people. The area covered by the NHS Bristol, North Somerset and South Gloucestershire integrated care board is the worst of all worlds, with fewer dentists, adjusted for population size, and lower dental activity delivery rates alongside higher numbers of A&E visits with dental problems.

I want to highlight two cases that show the impact that is having on vulnerable people. One constituent wrote:

“Despite contacting more than a dozen dental practices in and around South Gloucestershire and Bristol, I have been told by every single surgery that no NHS appointments are available. However, I have been offered private appointments if I am willing to pay…The situation is even more distressing as my wife is currently pregnant and requires urgent dental care, which is crucial for her health and that of our unborn child. Pregnant women are entitled to free NHS dental care, yet this right is rendered meaningless when no NHS appointments are available.”

Another constituent wrote to me: a cancer patient who needed major dental treatment ahead of intense radiotherapy. Bristol dental hospital advised them they would need lifelong follow-up care, but during covid that treatment was stopped and they were discharged back to their NHS dentist. Soon after—surprise, surprise—the practice ceased to provide NHS dentistry and they could not find another, so they were forced to pay for their essential treatment.

[Charlie Maynard (Witney) (LD)]

There seems to be a consensus across the House that the NHS dental contract is broken. That is the consensus across the country as well, including in my constituency. If there is one thing we can get out of the debate today, it is a timeline to which the Government will commit to fixing the situation and to bringing legislation before the House. Does my hon. Friend agree that would be of benefit?

[Claire Young]

I do. We also need solutions for people like my constituent in the meantime; they have already had to pay £1,400 for treatment and they face another £2,000-worth of work to be able to eat normally. That is a stiff fee when you are reliant on personal independence payment and your spouse’s pension. My constituent feels that they have nowhere to turn.

To sum up, patients like my constituents deserve access to an NHS dentist. We need an emergency scheme to guarantee access to free NHS dental check-ups for those already eligible: children; new mothers; those who, like my constituent’s wife, are pregnant; and those on low incomes. We need a dental rescue package that brings dentists back into the NHS from the private sector by fixing the dental contract and using flexible commissioning to meet patients’ needs in the meantime.

Brain Tumours: Research and Treatment

Charlie Maynard Excerpts

Thursday 8th May 2025 Commons Chamber

[Charlie Maynard (Witney) (LD)]

I too thank and commend the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh) for securing the debate. It has been a pleasure to work with her and we are all in awe of her single-minded relentlessness on this topic, from which we can all learn.

I have a similar story. Two years ago, I received a call from my nephew and my two nieces asking me to come over quickly. I jumped in the car and drove as fast as I could to my sister’s house, where I found her semi-conscious on the floor, which was the start of a journey over the past two years. She was diagnosed with a glioblastoma. She underwent surgery, chemotherapy and radiotherapy. She is somewhere up there in the Gallery now, and she is doing incredibly well. She is an absolute inspiration to everyone who meets her in her raw courage, determination, empathy and joy in the world. We do not know how it goes from here, but she brings home in her thinking how wonderful and beautiful our world is. She has also been a driving force. We have raised £60,000 and counting so far for the Brain Tumour Charity, which does a wonderful job, and she has brought people in left, right and centre who have suffered or are suffering from GBM or have lost loved ones to GBM. She is engaged, thoughtful and determined, and my heart goes out to her.

I will mention the stats. We know that there are 120 types of brain tumours. Some 12,000 people are diagnosed with a brain tumour every year and—the nasty one—5,300 people die from a brain tumour each year in the UK. In May 2018, the Government announced a research fund of £40 million on the back of the death of Baroness Tessa Jowell to encourage new research into brain tumours, administered through the National Institute for Health and Care Research. On that day, the then Health Secretary, the right hon. Member for Godalming and Ash (Sir Jeremy Hunt), said:

“At this agonising time, I hope her family can draw comfort from the fact that her legacy will be lives saved and heartbreak averted for thousands of other families.”

However, three years later, in May 2021, the then Health Secretary reported that just £8.8 million of that £40 million had been allocated for dedicated brain tumour research. Three years after that, in March 2025, under a new Government, spending to date directly on brain tumour research was just £11.3 million. Concerningly, a little bit of text was added after that, which said:

“plus an estimated £31.5 million in infrastructure”.

I have three key questions for the Minister, which I would love some answers to, because more than 5,000 people dying each year is far too many. This has been going on for far too long. We need to do more and fulfil the promises that this House has made.

The three questions are as follows. Will the Minister confirm that the new wording is not an attempt to include the £31.5 million of infrastructure spend in the £40 million headline number, with a view to getting the NIHR and the Government off the hook on their commitment to spend the full £40 million that they have committed to new research into brain cancers? Will the Government commit to allocating and spending the £40 million within a decade, which is already far too long, of their original May 2018 commitment—by May 2028, which is three years from now? That is doable if we put our minds to it, and we need the Government’s help. Will the Government stand by the May 2018 commitment to host an annual global conference to bring together world experts on brain cancer? That has not been done, and we committed to that as a House. Will we stand by that, commit to it and kick off a conference by the end of the year?

Oral Answers to Questions

Charlie Maynard Excerpts

Tuesday 25th March 2025 Commons Chamber

[Ashley Dalton]

My hon. Friend is right: coastal communities face unique challenges when it comes to health inequalities. I will shortly attend the all-party group for coastal communities, where I will meet him and colleagues to discuss these issues.

[Charlie Maynard (Witney) (LD)]

As the Secretary of State will know, in 2018, this House allocated £40 million of funding in memory of Dame Tessa Jowell, who was killed by a brain tumour. Seven years on, less than half of that money has been spent. The money is doing no good sitting in a bank, so will the Secretary of State please commit to spending that money within a decade of Dame Tessa’s death?

[Wes Streeting]

I am grateful to the hon. Gentleman for his question, as it gives me the chance to pay tribute to the late great Baroness Jowell, as well as to the work taking place in her name through the Tessa Jowell Brain Cancer Mission. There have been frustrating delays in getting funding out the door for the purpose for which it is intended. Ministers are looking carefully at this issue, and we want to make more progress more quickly, to ensure that families do not receive the same death sentence that our late friend did.

Rare Cancers Bill

Charlie Maynard Excerpts

2nd reading
Friday 14th March 2025 Commons Chamber

[Charlie Maynard (Witney) (LD)]

I thank the hon. Members for Edinburgh South West (Dr Arthur), for Mitcham and Morden (Dame Siobhain McDonagh) and for Birmingham Erdington (Paulette Hamilton), because I have enjoyed working with them on the Bill. We all have our own stories. I should state my personal interest. My sister Georgie is sitting in the Gallery. She was diagnosed with a GBM—glioblastoma multiforme—nearly two years ago. I would like to say that she is alive and well, but let me just say that she is alive and she is doing well. She has been brave, determined and an inspiration to us all. It is particularly painful as she is a mother of three, a wife, a daughter and a sister. We have a lot to focus on, and it is on us collectively.

I will not rehash too much, and I will try to resist having a cry-fest, but it might be difficult. Our actions, and what we do as a team, are what we will be judged on. I am going to throw it over to the Labour side a little, because they are in government now and they have more power than we do in opposition. When we leave the Chamber today, I ask each Government MP to ask, “Okay, what are we actually going to do?” The talk in this Chamber is nice, but it is the actions that count.

I will pick up on two points. The first is the trial register. We have first-hand experience with Georgie of trying to find what trials are out there. Obviously, there are not enough trials; we know that, and that is something we need to fix. Also, matching patients with trials is not rocket science—that is a basic thing. I would also encourage the Government, rather than just starting from scratch and taking months to reinvent the wheel, to find out what is going on in the private sector and what trials and registers of people seeking trials are already out there, and to build on that. If there is a partnership with some company, that is fine, but let us move quickly, because speed really counts.

The second point is about orphan drug regulations. A key trigger for me getting into politics was Brexit. I thought it was a disastrous idea, and I still do. I struggle to find any possible gains from Brexit, but there is one thing that we could do. The EU has regulations on orphan drugs; ours could be more generous. We could pull research into the UK by giving patents for a few extra years, which would encourage people to dig into the research in these critical areas. I live in hope of that one potential gain.

Even if products are obtained, reimbursement has to be accessible on the NHS, which is far from certain. Ensuring that there is a robust, timely and accessible route to making these drugs available on the NHS for patients really counts. It is critical that that does not fall off the radar. Also, we are really falling behind in the number of clinical researchers active in the UK today. If we want to get this research moving, we must think about what we are doing to get clinical researchers working hard in this space and in others, because we are not doing a good enough job on that.

That is all I will say. Let me just return to my first point: we need action. It is good to have those in the Gallery here today.

Oral Answers to Questions

Charlie Maynard Excerpts

Tuesday 19th November 2024 Commons Chamber

[Stephen Kinnock]

We have pledged to bring back the family doctor, and we have already invested an additional £82 million in the additional roles reimbursement scheme to recruit 1,000 more newly qualified GPs in 2024-25. We are also committed to fixing the front door of the NHS, for example through £100 million of capital funding that was announced in the Budget. We are fully aware of the pressures, and we will set out further details on funding allocations for next year in due course.

[Charlie Maynard (Witney) (LD)]

T5. Will the Secretary of State give a clear date by which QR codes will be incorporated into the NHS app at the point of care, thereby making the process faster and safer, as was highlighted to me by Dr Steve Bright at the Windrush health centre in Witney?

[Wes Streeting]

I might resist the invitation to give a specific date today, but the hon. Gentleman makes a valuable point about the ease of use of the NHS app, and I will write to him further on that point.