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Derek Thomas (St Ives) (Con)
I beg to move,
That this House has considered brain tumour research funding.
I am hopeful that we will have nodding heads on both sides of the House for this debate this afternoon. I thank you for the opportunity to speak, Mr Deputy Speaker, and thank the Backbench Business Committee for making time for this debate.
I pay particular tribute to those families around the UK who are living with a brain tumour diagnosis. When I meet some of these families, I see an enduring hope, when so often their outlook seems hopeless. It is for that reason that the purpose of this debate is to demand a greater emphasis from Government and to accelerate the effort to find more effective methods to treat patients with brain tumours and ensure that they have the best care and rehabilitation possible.
Many hon. Members will remember that back in 2015, the Realf family presented a petition with 120,129 signatories calling for an increase in national funding for the research into brain tumours. The Petitions Committee picked it up and the following Westminster Hall debate led to the Government Minister at the time establishing a task and finish group to look at the issue. That group published its report in 2018 and the Government subsequently announced a £20 million fund for research into brain tumours, boosted by a pledge of a further £25 million by Cancer Research UK.
Mr Alistair Carmichael (Orkney and Shetland) (LD)
As the hon. Gentleman knows, I have been on this journey with him since that quite remarkable Westminster Hall debate in 2016. We said then that we needed the money; we got the money, but now we find that there are structural problems still standing in the way of the progress we need. To me, that says that there is probably nobody in charge of the strategy within the Department. Does the hon. Gentleman agree that if we can achieve anything in this debate, it will be to hear a commitment from the Treasury Bench that somebody will take charge of this strategy and make it happen?
Derek Thomas
Of course, I agree with the right hon. Gentleman. Actually, I want the Government to go further and make brain tumour research the priority of all cancer research, because we have not seen the progress that we should have in that time.
Margaret Ferrier (Rutherglen and Hamilton West) (Ind)
A constituent got in touch with me yesterday to tell the devastating story of her young niece, who struggled to obtain a diagnosis despite several GP trips and horrendous symptoms that left her unable to eat properly or attend school. Does the hon. Member agree that ringfenced funding, specifically for research into childhood brain tumours, must be agreed urgently?
Derek Thomas
I will come on to that point later. I am grateful for the contributions that we have already heard.
I pay tribute to the late Dame Tessa Jowell, who sadly received her own diagnosis of a brain tumour soon after that debate, when Government funding was being announced. At that time, about five years ago, she said in the other place:
“For what would every cancer patient want? First, to know that the best, the latest science was being used…wherever in the world it was developed, whoever began it.”—[Official Report, House of Lords, 25 January 2018; Vol. 788, c. 1170.]
Sadly, she passed away in May 2018.
Soon after, an additional £20 million of Government money was made available and the Tessa Jowell Brain Cancer Mission was established. I pay tribute to Dame Tessa Jowell’s daughter and the mission for the way that they have transformed the pathway and the care that brain tumour patients get, and for the work that they continue to do. I appreciate the way that they have engaged with me and others on the all-party parliamentary group on brain tumours in their work.
The provision of £65 million heralded a significant shift in focus towards brain tumours. Given the high-profile commitment to brain cancer research, we should not be here calling for a commitment and a focus on brain tumour research five years later. Sadly, however, despite the £40 million of Government funds that were committed to research, there has been a lack of grant deployment to researchers.
It is important to note that Cancer Research UK, since announcing its commitment to spend £25 million on strategic initiatives in brain tumour research in 2018, has committed almost £28 million to that cause. That is not the case for Government funding. To date, the figures of the National Institute for Health and Care Research—the body responsible for distributing that research funding—state that of the £40 million, between £10 million and £15 million has been deployed, and that depends on how we interpret brain tumour research.
The all-party parliamentary group on brain tumours, which I am privileged to chair—perhaps I should have declared my interest at the start—decided to conduct the “Pathway to a Cure—breaking down the barriers” inquiry, which aimed to identify barriers preventing that important funding flowing to its intended recipients. We felt the need to launch that inquiry only because a series of meetings, including with the National Institute for Health and Care Research, the Medical Research Council, the Department of Health and Social Care and a Government Minister, failed to reassure us that dedicated research funding would or could be used to ramp up the research needed if we want to discover the breakthrough that every brain tumour sufferer and their family longs for.
Those of us who serve on the all-party group were able to understand the severity of the issue and the lived experience for patients, families, clinicians and researchers only because of the sterling work of the charity Brain Tumour Research. It provides the secretariat for the all-party group and brings together thousands of people across the UK to share their experience, knowledge and understanding, and to make up what I affectionately know as the brain tumour family.
In February last year, we launched our inquiry and took evidence from clinicians, researchers and patients. We released our report last Tuesday. Today, part of the way into Brain Tumour Awareness Month, we will set out what we have unearthed during the inquiry and press the Government to review and reform their method of deploying research funds to those who can make best use of them.
From our work, we know that researchers find it challenging to access Government funding, because the system is built in silos. We know that cell line isolation and biobanking are happening, but at only a minority of sites across the research community; that the pool of talented researchers is finite; and that NIHR processes act as a disincentive to researchers who can apply their expertise and intellect more easily elsewhere in the medical research field.
We also found that there are a limited number of clinical trials available for brain tumour patients, and that the national trials database is not reliable. We found that pharmaceutical companies are choosing not to pursue the development of brain cancer drugs in the UK, and that funding is not ringfenced—specifically for research into childhood brain tumours, as has been mentioned, where survival rates for the most aggressive tumours have remained unchanged for decades.
Kirsten Oswald (East Renfrewshire) (SNP)
The hon. Member is touching on a point that I am sure will have been heard by every MP in this place. Constituents who, sadly, have children who have been or are affected by brain tumours know only too well that things have not changed for decades. That is why what he has come here today to talk about is so important. We need to shift the dial. It is not good enough, it is terribly unfair and the consequences of us not shifting it are obviously profound.
Derek Thomas
Sadly, I have met far too many parents who have lost loved ones. It is heartbreaking to speak to them, and to see how a juggernaut has charged through and destroyed much of their lives. They give me so much hope that we can do this work because of the commitment they have to this subject.
Before I address the specific recommendations of the report, may I thank colleagues—many of them are here today—who have given up the last year to interrogate witnesses and to take evidence? I want particularly to mention my hon. Friend the Member for Scunthorpe (Holly Mumby-Croft), the right hon. Member for Leeds Central (Hilary Benn), my hon. Friend the Member for Buckingham (Greg Smith), the hon. Member for Ceredigion (Ben Lake) and Lord Polak CBE from the other place, but also Sue Farrington Smith MBE of Brain Tumour Research, Dr David Jenkinson of the Brain Tumour Charity, Professor Garth Cruickshank, Dr Antony Michalski and Professor Tony Marson, who took part in the inquiry, and most importantly, Peter Realf, whose son was lost and who triggered the petition back in 2015.
To turn to the findings, the Government must recognise brain tumour research as a critical priority. Five years ago, a remarkable effort was made by Government to respond to the shocking statistics that surround brain tumours. Brain cancer remains the biggest cancer killer of children and adults under 40. In order for survival rates to increase, the Government must go further and treat brain tumours as a key priority. This has been achieved in other countries through legislation, and I urge the Minister to see what can be achieved here. A brain tumour champion, which has already been hinted at, is needed to co-ordinate the funding and implementation of a strategy between the Department of Health and Social Care and the Department for Science, Innovation and Technology.
In order for brain tumour research to lead to tangible changes in survival rates for patients, it needs to receive funds across the research pathway, including discovery, translation and clinical research. I recognise the recent advances and improvements in molecular testing and prognostic information, but there is a requirement for further discovery research. That will improve the understanding of disease biology, and how best to frame and support pre-clinical trial research. For instance, a particular issue for tackling brain tumours is the complexity of drug absorption through the blood-brain barrier.
It is crucial that the Government enable the building of critical mass in these elements of the research pipeline. With no ringfenced funding to support poorly funded disease areas such as brain tumours, investment in the disease is not always prioritised. Focused calls for multidisciplinary research into brain tumours through organisations such as the MRC would support this. Additionally, making the blood-brain barrier a strategic priority and encouraging investment in cutting-edge research could yield game-changing results in the treatment of brain tumours and other neurological diseases.
On translational research, on average, it takes 15 years for an idea to move from the pre-clinical stage to helping a patient. Patients have not got that long to wait. Researchers have said they found it challenging to access Government funding for translational research, relying on charities to fund risky elements of the pipeline. More must be done to support this valley of death element of the research pipeline. That seeks to move basic science discoveries more quickly and efficiently into practice, and that shift would increase interest among the research community, ensuring a greater concentration of research expertise in this area.
The inquiry also found that there is a perception that review panels have a lack of understanding about the unique nature of brain tumour research, due to a deficit of specialists on panels. That was reported to account to some degree for low application success rates. During oral evidence sessions, it was also highlighted that a lack of feedback disincentivised unsuccessful applicants from reapplying, bearing in mind that they would potentially have spent a year on such work before their original application was ready for submission.
Positive and proactive engagement with the research community should be nurtured through a continued programme of workshops and funding toolkits for researchers, supporting navigation of the funding system and increasing success rates. Currently, due to many of those issues, and a lack of funding and support, early stage researchers, especially post-doctoral researchers, are moving away from the field of brain tumour research. They are attracted by more readily available and secure funding in other disease areas. A solution for that would be the MRC and the NIHR ringfencing opportunities, such as specific brain tumour awards, across the research pipeline.
Funding could also be prioritised for a fellowship programme, supporting early stage researchers to develop their skills in the field. There is an example within the Cancer Mission, where two teaching fellowships, match-funded by the NIHR, are taking place. That number needs to increase. Learning about brain tumours early in careers results in researchers going on to choose the discipline.
Currently, only 5% of brain tumour patients are entering the limited number of trials available. Clinicians stated that many trials that patients with brain tumours are eligible to enter are not accessible to patients, who often have physical disabilities, as participants are expected to travel long distances across the UK. Poor health and the cost implications were key barriers to patients entering studies that were available to them.
A survey carried out by Brain Tumour Research highlighted that 72% of patients who responded would consider participating in research or a clinical trial if offered the opportunity. Only 21% believed that healthcare professionals gave sufficient information about opportunities to participate in clinical research, including trials.
That approach does not take account of the benefits that new and repurposed therapeutics could provide for brain tumour patients. If brain tumour patients are excluded at an early stage, possible benefits for such patients are not identified and carried forward in later trials. Access to trials should be assessed not by the location of the tumour, but by other individual criteria such as genomic profile and medical history.
It was also demonstrated that clinicians are risk-averse to children accessing early phase trials, despite parents’ wishes. As a result of those limitations, patients are encouraged to travel overseas in pursuit of treatment not available in the UK. Some small improvements to both systems would allow many more clinicians to successfully support patients to access trials across the country.
We have touched on this briefly, but paediatric brain cancer is viewed by researchers as different from adult brain tumours because brain tumours in children are linked to physical development, rather than ageing. Current treatments for children have significant long-term side effects and much more research is needed into kinder treatments and novel drug delivery for children. Additionally, more must be done to tackle brain injury issues and the consequences of brain tumour treatments.
In this place, we often talk about the need to support people to meet their potential and to live life to the full to address issues that curtail life chances. That is no less important for children and young people who have experienced a brain tumour or brain cancer. Using the method adopted by the NHS to measure survival rates, children’s survival following a tumour is positive. However, they are often left with a brain acquired injury caused by the surgery and treatment of the brain tumour itself.
Once the child is discharged from the hospital, there is no guaranteed pathway of rehabilitation or access to suitable education, therapies, services or physio. That causes tremendous additional strain on the family as they seek to access and fight for the appropriate step-down care. In many cases, the lack of those therapies means that the recovery and life chances of the child or young person are nowhere near as good as they could or should be.
In this place, we want life to be a success. I pay particular tribute to Success Charity and Dr Helen Spoudeas, who has worked tirelessly to ensure that these brain acquired injuries are taken more seriously and that a concerted effort is made to ensure the best possible recovery. Success Charity exists to advocate for survivors and provide them with the care and support that they need and deserve. It has its annual conference at the Royal College of Physicians this Saturday, which will give families an opportunity to share experiences and make friends with other survivors, siblings and parents, and to listen to inspirational speakers.
Having given some thought to this issue, and having discussed it with others, I think that an appropriate approach would be to introduce a commitment that every child and their family would be entitled to a carefully crafted package that ensures that all the needs of a growing and developing child are met, including access to education services, and that the best person to ensure the implementation of this package would be an occupational therapist.
This Government want the UK to be considered a science and technology superpower. The UK must start setting the pace for recovery rather than fall further behind. Business as usual threatens the UK’s ability to lead clinical trials for brain tumours. Brain tumour research must be seen as a critical priority, with Government developing a strategic plan for adequately resourcing and funding discovery and translational and clinical research. Robust tissue collection and storage facilities must be put in place across the country. As a Government Minister said in this place only last week, every willing patient must automatically be part of a clinical trial, and that includes collecting and storing tissue for research. There must be equity of access to clinical trials and a robust and up-to-date clinical trial database. The regulatory process must be simplified, with the introduction of tax relief and incentives for investors to encourage investment for the longer-term periods necessary to develop and deliver new brain tumour drugs.
There is so much more that could be said, and I am sure that much more will be covered this afternoon. I hope that the Minister will take the report and our recommendations seriously, and that he will have an opportunity to come back to us at a later date—when he may have more time than that afforded to him at the close of this debate—to set out how the Government intend to respond to our recommendations. Will he also agree to meet me and members of the all-party group to discuss the recommendations of our Brain Tumour Research report? Thank you, Mr Deputy Speaker.
Sir Iain Duncan Smith (Chingford and Woodford Green) (Con)
On a point of order, Mr Deputy Speaker. I apologise to my hon. Friend the Member for St Ives (Derek Thomas) and to the House for intervening on this very important debate—like others, I am fascinated by what is being said—but may I ask whether the Government have notified the Speaker’s Office that they intend to make a statement about the semi-briefings being made to the media that they have decided to pause or stop whole elements of HS2? Surely that would be best done through a statement to the House, rather than through elements of the media. I would be grateful for your guidance as to whether a statement should be made, and whether the Speaker’s Office has received any notification that the Government are inclined to do so.
Mr Deputy Speaker (Sir Roger Gale)
I am grateful to the right hon. Gentleman for raising this issue and for giving me advance notice of his intention to do so. So far as I am aware, as we stand no such request has been made to the Speaker’s Office. Mr Speaker has made it abundantly plain on very many occasions that he expects information of this kind to be given from the Dispatch Box to this House, as a courtesy, before it is made available to anybody else. The right hon. Gentleman has made his point. Mr Speaker will have heard it, and I do not doubt that those on the Government Front Bench will have heard it as well.
Hilary Benn (Leeds Central) (Lab)
The reason that I rise to participate in this debate is that just under two years ago a constituent wrote to me. He revealed that he had a brain tumour and asked me to go along to an APPG meeting to discuss ways in which we could try to find a cure. I went along and I must confess that little did I know then that I would end up taking part in the inquiry. We had, I think, six evidence sessions and we heard from a lot of people. The report, which the hon. Member for St Ives (Derek Thomas) referred to, distils into its recommendations what we heard from those who contributed and who were very patient in answering the many questions that we put to them.
I pay tribute to the hon. Member, who chairs the APPG and who chaired the inquiry. He has done so brilliantly, cheerfully and in a way that has brought out the best from all of the people who appeared before us, who came along to let us draw on their expertise, to share their frustrations and to offer their ideas and suggestions. It has been an honour and a privilege to work with him and all the other hon. Members here who took part. I also thank the wonderful secretariat from Brain Tumour Research for supporting us in our work and for pulling the report together so skilfully.
A cancer diagnosis is a terrible thing, although statistics tell us that one in two of us will receive such a diagnosis during our lifetime. I think most of us, if we are honest, would say that we wince when we hear the word “cancer”, because all too often it conjures the idea of a downward path to the end of our lives. Any of us who has been through that experience, either ourselves or, in my case, with those we love, knows exactly how that feels, but death is not always the outcome. Our lives are not preordained, and we have seen real advances in the treatment of certain types of cancer in recent years—breast cancer is a good example—and, overall, I am advised that cancer survival rates in the UK have doubled in the last 40 years.
But when it comes to brain tumours, the blunt truth is that there has been almost no progress at all. The five-year survival rate for glioblastoma, the most aggressive form, is 6.8%, and the average length of survival is between 12 and 18 months.
Siobhain McDonagh (Mitcham and Morden) (Lab)
My right hon. Friend refers to the average length of survival as being 18 months. Actually, it is nine months. His figure suggests that everybody completes treatment. Nine months is the life expectancy of somebody diagnosed with glioblastoma.
Hilary Benn
I absolutely take my hon. Friend’s point, which reinforces, in all of us, our awareness of just how awful this diagnosis is, and it is the answer to the question that every person who receives such a diagnosis asks their doctor: “How long have I got?” Eight or nine months is no time at all.
Dr Matt Williams, a clinical oncologist, is quoted in the report:
“Every week I have to tell patients that there is nothing more we can offer. I have now been a consultant for 10 years and these conversations are the same now as when I started.”
That is why a brain tumour is a devastating diagnosis. A patient quoted in the report says:
“It’s devastating and living with a time bomb in your head.”
That is a very good description of what it must feel like. In those circumstances, what do patients and loved ones want? What we would all want is to make sure that we are doing everything we possibly can to try to change that.
Mr Carmichael
I speak about this publicly from time to time, and I am always struck by the number of people who say to me, “Thank you for doing that, because this took my father”—or their brother, their neighbour, their friend or whoever—“and I had no idea that this had been their life experience.” When I was growing up, 40 or 50 years ago, a cancer diagnosis really was not talked about—it was almost taboo—and I think we are in the same place with brain cancers. If we are to make the progress we need, we all have to start talking about this much more. The experience has to be shared.
Hilary Benn
I agree completely with what the right hon. Gentleman has said. To borrow a phrase, it’s good to talk about brain cancer. That is why we are here in this Chamber today. We are here to raise awareness, because loved ones dying remains, among some people, a great taboo, about which we are fearful of saying anything. When my late first wife died of cancer at the age of 26, I was struck by the fact that my colleagues at work, though wonderful people, found it almost impossible to mention what had happened when I went back to work. I understand why, because before it happened to me I would have been like them. I would have thought I would say the wrong thing or cause someone to break down in tears. When it happens to you, you come to realise that there is nothing special to say; you just have to go up to the person and say, “How are you?” and listen. Yes, they will cry and you will cry, but that is so much better than people hiding it inside, with the suffering that it brings.
That is what this report is trying to do—it is trying to make sure that we are doing everything we can. There are good reasons why brain cancer is proving so difficult to treat. I learnt about that, as did the other members of the inquiry panel. The brain is a complex organ. I had never heard of the blood-brain barrier before. I am not sure I still understand it, but I heard a lot about it in the evidence we received. We learnt about treatments that had been tried and had failed, and about the desperation of those with brain tumours to get on to trials that might just offer some hope, not of a cure, but of a few more months. For someone who has received a diagnosis of a brain tumour, every second—let alone every minute, week or month—is extremely precious. We heard of the despair of people who are unable to get this for themselves or their loved ones, and it is so particularly poignant when it is children who have a brain tumour.
So we are calling for a renewed and determined focus on doing every single thing we can to change the situation, not because we are naive about the difficulties, which are many, but because it is the very least we can do for the people who find themselves in this position. So, of course, we have called for greater investment. I thought the hon. Member for St Ives explained well why the funds that have been made available and set aside for brain tumour research—I welcome them enormously—have not all been allocated and spent. It is not for want of willingness; it relates to the point he made about the lack of suitable research proposals coming forward and the frustration, which came across so clearly in that one evidence session in particular, of those who have put their research proposals to the research bodies, have been knocked back and feel, “They did not really understand what we are trying to do.” That is because those who sit on those panels may not have expertise in the field of brain tumour research, which is why we strongly encourage the research councils to look more widely at, and more favourably upon, proposals for brain tumour research.
We have a funding system that has been built in silos. It needs to be better joined up, from basic science through to clinical trials. At this point, I wish to pay tribute, as we all would, to the clinicians, scientists, doctors and others who work their socks off to try to crack this problem and find a treatment. That is why we have made some very specific recommendations. The example of biobanking and tissue samples seemed so simple when people talked about it. When we are dealing with any disease, but particularly this one, does it not make sense to pool all of the information that we have available about what we have learnt, what we still do not know, what may work and what may not? Clearly, that is not happening, even though it is a simple thing to do so that anyone undertaking research can draw upon all the available material as they apply their mind, scientific skill and determination to finding a cure.
We are also calling for patients with brain tumours to have equity of access to trials of new anti-cancer drugs that currently may be available only to patients with other types of malignant cancers. There can be a fear that if other people are brought into the trial, it will somehow skew the result. However, if a person is dying, that is not their concern. Their concern is: “Might this possibly work to save my life or the life of the person I love?”
I hope that this report and the views of all those people who so generously gave their time—we thank all of them—will have an impact as, collectively, we roll up our sleeves, redouble our efforts, and express an even greater determination to find treatments and cures for this cruel disease that shortens the lives of so many people whom we have come to know or know already and love. What keeps us going in difficult times is hope, and I think these recommendations offer exactly that. As one patient said, “If you have hope, you have life.”
Mr Deputy Speaker (Mr Nigel Evans)
Seven Members are trying to catch my eye. I will start the wind-ups at 4.30 pm. That will mean eight minutes for Back Benchers, 10 minutes for the two wind-ups and then two minutes for Mr Thomas. If we stick to the eight-minute mark, everyone will get roughly the same time, so I ask everyone please to show some consideration for their colleagues.
Holly Mumby-Croft (Scunthorpe) (Con)
First, let me offer my thanks to the Backbench Business Committee for allowing time for this really important debate. I have been working on this issue for some time, alongside other members of the all-party parliamentary group on brain tumours who have produced this report. I wish to put on the record my thanks to all those who have contributed to the report and, specifically, to Brain Tumour Research for its help. May I also give a special thanks to my hon. Friend the Member for St Ives (Derek Thomas)? I greatly admire the way that he has led this process and the work that he has done on brain tumours over my time in this House, and I know that he will continue with that work.
Like many Members, I took a keen interest in this issue because of a constituent of mine, David Hopkins, who sadly was diagnosed with a brain tumour. He features in the all-party group’s report. In September 2020, David went to Scunthorpe General Hospital because he was unwell. That was right in the middle of the covid pandemic, so he was alone and had to go through the experience without his family with him. He was given the devastating news that he had a brain tumour—a glioblastoma. As we have heard today, the life expectancy of person who is diagnosed with a glioblastoma is between 12 and 18 months, so it is an utterly devastating diagnosis to receive for a family man and a very much-loved member of our community.
David underwent bouts of chemo and radiotherapy, and he sought personalised immune therapy in Germany that cost £150,000. Unfortunately, a scan in April 2021 showed further tumour progressions and he had to have two craniotomies. By the following July, David had exhausted all treatment options that the NHS could provide for him and began NeoPeptide vaccine treatment, again in Germany. Sadly, this did not save David and he died in November 2021, leaving behind his children, Dylan, Lydia and Sydney, and his wife Nicki. I should say that Nicki is a force of nature. We are incredibly proud of her in Scunthorpe. She has gone on to raise funds for Brain Tumour Research and she ran the London Marathon. I commend Nicki for the work that she has done in this area.
As I have already mentioned, people with glioblastoma may have only 12 to 18 months to live. The five-year survival rate for this cancer is still only 12%. By comparison, this rate has increased for cancers such as breast cancer and leukaemia to 85% and 54% respectively. This is not a coincidence; there has been extensive research and funding for treatment for these cancers, and we need to find treatment and cures for people such as David.
The Government have pledged £40 million to fund brain tumour research. That is neither a small nor inconsequential amount of money. It shows that there is political will to solve the issue, but will alone is not enough. Only £15 million of that pot has been spent, and that underspend must be addressed. As the report explains, there are serious shortcomings in the current funding system when it comes to accessing the funding. We simply need to get the money into the hands of doctors, researchers and the people who know what to do with it—the people who are, as we have heard, working their socks off to find a cure for this terrible disease. A further step that the Government can take in the right direction is to recognise that this is a priority and to develop a plan, backed by the pledged money, that will support research from beginning to end.
The report contains a number of key recommendations and proposals, and I will highlight a few of them. First, any treatment that is made available must be tested beforehand to assess its efficacy—we understand that—but there is a dearth of available trials, and the number of people participating in them is shockingly low. There are instances in which people with brain tumours are excluded from trials owing to concerns about the side effects from which they might suffer. Sometimes, people are just not aware that a trial is running until it is too late for them to participate.
Surveys have shown that people want to participate in trials—I think that we all instinctively understand that that is the case—and we should make it as easy as possible for them to do when clinically appropriate. Guidance must be given on the inclusion of brain tumour patients in early-phase cancer trials. More mutation-focused studies should be commissioned, and the available trials should be listed in one single source that is available to patients at their bedside, as well as to clinicians.
Secondly, another issue raised throughout the enquiry was one that researchers often encounter when taking their findings from labs into treatment centres. Conducting this translational research costs money, but researchers are impeded by a system that is difficult to navigate, meaning they cannot access money that the Government have pledged or put forward. It is ludicrous that scientists spend time and money and provide expertise on research that might go to waste because they cannot take it through the next steps. I would encourage the Government to look closely at the proposals to improve access to funding and for the MRC to introduce a fund to accelerate the pathway from discovery research to translational development.
The report provides answers on why we seem to be stuck, as it were, on brain tumour research, and why we have not made as much progress as we might have on tackling the disease. People suffering from brain tumours do not have the luxury of time, and we owe it to the people who will be diagnosed in future to take action that gives them the best possible chance of survival, so that families such as the Hopkins family in Scunthorpe do not lose the people they love.
Several hon. Members rose—
Mr Deputy Speaker (Mr Nigel Evans)
Order. I actually got it wrong. There are only two wind-ups of 10 minutes each, plus two minutes for Derek Thomas, so Members have a bit more than eight minutes. Just don’t go wildly over, please. I call Siobhain McDonagh.
Siobhain McDonagh (Mitcham and Morden) (Lab)
I crave the indulgence of the House for the speech that I am about to make.
On 27 November 2021, my beautiful, unique, tough, resilient, successful sister collapsed in front of me and had a series of fits. Five hours later, in University College Hospital, two doctors named Henry told me that they suspected that she had a brain tumour, but as this was the NHS, MRI scans were not done at the weekend, so they could not confirm their diagnosis. On Wednesday, when I stepped on to her ward, she demanded—and everybody here who knows her will be able to hear her say it—that I ask the ward doctor to come and speak to her. She said, “It’s bad, Siobhain, because he can’t look at me.” And it was.
For the woman who had run Labour’s only two consecutive successful general election campaigns, and achieved her ultimate ambition to see two full-term Labour Governments, the diagnosis was of a glioblastoma. All her toughness evaporated, and there was my little sister with a diagnosis that meant that she might have nine months left—a condition for which there was no cure, for which treatment had not made progress in over 30 years. Just before Christmas, she had the tumours removed by two amazing female surgeons, Róisín Finn and Anna Miserocchi at the National Hospital for Neurology and Neurosurgery, but this was post Brexit, so there were not enough nurses to keep all the operating theatres open, and Margaret’s operation was cancelled three times. I leave it to Members to guess my reaction to that, and how we got that operation in the end.
The best piece of advice I have ever received in my life, and I have received many bits of good advice, was from the clinical nurse specialist. When we asked her where Margaret should go for post-operative treatment— St George’s, down the road from where we live; the Royal Marsden, around the corner; or to stay at University College—Róisín said, “We have Professor Paul Mulholland, and he is the best. He is the best in the UK, and he is the best in Europe.” I want to confirm to the House that he is the best. He is why Margaret is still alive.
What you get when you have your tumour removed, if you live that long—many people do not—is six weeks’ radiotherapy, followed by six months’ chemotherapy with a drug called temozolomide. That drug was introduced in 2005, and since then there have been no variations to the gold-standard treatment in our NHS, so when you read articles such as the one in The Times on Monday, telling us all how successful cancer treatment in the UK is—how 85% of people with a breast cancer diagnosis, 55% of people with a bowel cancer diagnosis, and 98% of people with a prostate cancer diagnosis will get to live for 10 years—do not believe that it is the same for brain cancer. The Times may have chosen a brain as the photograph for the top of the article, but those statistics do not apply.
Margaret had her treatment in early new year 2022; like so many, she could not go through with it—the treatment would have killed her. At that point, where do you go? There were no alternatives. It is not that there are a few trials: there are no trials, and there is nowhere to go. So, like so many of us who are lucky enough to have friends and family and access to money, we looked to the private sector and international travel. Margaret has been on a course of treatment with nivolumab, a Bristol Myers Squibb drug that was seen to be unsuccessful in the treatment of brain cancer, and Avastin, and has been going monthly to Düsseldorf, Germany for four days. That might seem an easy thing to do, but taking a seriously ill person on an aeroplane to a hotel, with no access to healthcare and no emergency services, would be foolhardy unless there was nothing else in this country. There was, and is, nothing.
The help that we received from Dr Sahinbas and his wife, who runs their small clinic in Germany, with hyperthermic treatment was amazing. Their kindness was overwhelming, but there were times when I thought that I would not be able to get Margaret on the plane—that somebody would stop her because she was so unwell. There was one night when I stayed and stared at her, because I did not think she was going to make it through the night, and how would I explain that to anybody?
By June 2022, Margaret had a scan, and they could not see the tumour. When I asked Dr Mulholland, “Is this normal for this treatment?”, he said, “Normal? I have never tried this on anybody before.” Nobody has ever had this drug so early in their treatment or at the quantity that Margaret has had it, or at the same time as hyperthermia therapy. Those who know about Margaret’s experience have come to me and sought support from Dr Mulholland because there is nothing else. The number that the NHS is currently forsaking and, for the lucky people who can get the funds to do it, abandoning to international travel is nothing short of a complete and utter national scandal. I wonder what my mum who came here in 1947 to train as part of the first generation of NHS nurses from Ireland would say about the NHS abandoning her daughter.
But things can be different. Things can be better—maybe not today, maybe not tomorrow, maybe not next year, and maybe not within Margaret’s lifetime—and they can be different if we want them to be different. I ask the Minister to please not give the NHS or the cancer research charities any more money until they guarantee that at least 200 sufferers every year get access to a trial—that would be 1,000 patients over the lifetime of a Parliament—because with those trials we can begin to understand what works and what does not.
The Minister should give no more money to the NHS trainers until they commit that every young doctor training to be a medical oncologist has to go through a course on brain tumour. At the moment, there is no compulsory training. The reason why there is nobody on those wards and nobody doing the work is that we are training nobody, and we are training nobody because nobody is required to do the course, and it was like that 15 years ago with melanoma. Some 15 years ago, the survival rates were so poor, but somebody came up with the idea that immunotherapy would be successful, and today we see successful survival rates equivalent to the best in any discipline. We also see young doctors wanting to take on the specialism, because it is exciting, there is hope, there is a future and there are alternatives.
Who in their right mind today would become a medical oncologist in glioblastoma? There is no hope, no future, no trials—nothing. It would have to be someone with the belligerence and tenacity of my sister Margaret, and we have found that person in Paul Mulholland, but there needs to be more Pauls and more determination. We must have access to trials for 200 people and the training of medical oncologists, and we must require the pharmaceutical industry—because we will make no progress without it—to trial every drug that gets licensed to deal with tumours on those with brain tumours, so that there is access to existing drugs that can be repurposed.
I am sorry about the time I have taken for this speech, but I want to tell the House that when I go to bed tonight I will keep my ear open for Margaret to hear her call my name, I will get up and I will go into her room, and it may be that she is asleep and I have imagined that she has called me. I accept that. That is my duty. It is what I have learned from my family, from my faith and from my politics. I accept that. That is my duty. It is what I have learned from my family, what I have learned from my faith, and what I have learned from my politics. I accept my responsibility. All that I want is for the NHS, cancer research charities, and pharmaceutical companies to stand up and accept their responsibility, and give some hope to the 3,200 people who will be diagnosed with a glioblastoma this year.
Mr Deputy Speaker (Mr Nigel Evans)
That was a very brave speech, Siobhain. And please send our love from Parliament to Margaret.
Greg Smith (Buckingham) (Con)
It is a privilege to follow the powerful speech from the hon. Member for Mitcham and Morden (Siobhain McDonagh), and like you, Mr Deputy Speaker, I congratulate her on the bravery of sharing that deeply personal family story. No matter how difficult and emotional it was for her to share that story with us, Parliament is richer and this debate is all the more powerful for the story that she has told. I thank her for sticking with it, and for sharing that in the House this afternoon. I also send my best wishes to her sister.
This is an incredibly important debate, and I thank the Backbench Business Committee for giving us the opportunity to debate the issues around brain tumours, finding a cure, and saving and prolonging lives. I particularly thank my hon. Friend the Member for St Ives (Derek Thomas) for the dedication he has shown in opening this debate, for his leadership of the all-party group on brain tumours, for working so hard to raise awareness of brain tumours, and for highlighting the importance of research in improving clinical outcomes for brain tumour patients. It was a privilege to serve under him on the all-party group inquiry that led to the recommendations he spoke of earlier, and the report, “Brain Tumours, Pathway to a Cure—breaking down the barriers”. If I wish to convey a simple message in my remarks this afternoon, it is a sincere plea to my hon. Friend the Minister to take this serious, evidence based report seriously, and to act on its recommendations for the good of all brain tumour patients today and in the future. It is to save lives.
As others have said, despite £40 million being made available by the Department and delivered through National Institute for Health and Care Research in 2018, less than half of that funding made it to researchers. In fact, as of May 2021, only £8.8 million had so far been allocated by NIHR for dedicated brain tumour research. It was said by the Department that more had not been allocated due to
“a lack of new basic science discoveries”
but I suggest that that is completely missing the point, and represents a huge omission in the types of patients being offered trial treatments.
Clinical research is pivotal to improving health outcomes for patients with brain tumours, by developing new methods of prevention, diagnosis and treatment. The benefits of clinical research extend far and wide, with evidence showing that hospitals involved in research provide higher quality care, and have lower levels of patient mortality. The APPG’s inquiry uncovered that there is a gap in research funding along the pathway of discovery, and translational and clinical research. That manifests itself first in an uneven distribution of clinical trials across the country, secondly in the inability of clinicians to secure Government funding for translational research, which takes discoveries from research to the bedside of patients, and thirdly in a lack of staff time for research, and a lack of NHS resource to support those patients on funded research studies.
The all-party parliamentary group report lays out in stark terms the extent to which years of underfunding and neglect for priority areas of research into treatments made the task of reaching parity between patient groups that much harder. In particular, the report highlights how the lack of funding for research into childhood brain tumours, where survival rates for the most aggressive tumours have remained unchanged for decades, have led to frustrated families—upset families, worried families —seeking costly and unproven treatment abroad, which in turn prolongs suffering both for patients and their loved ones. Indeed, five years after the allocation of funding, there are no new treatments and the five-year survival for patients is, I believe, still just 12%. By 25 January, just £15 million had been awarded since June 2018, with £6 million of that not easily identifiable as actually relevant to brain tumours. That, I respectfully put to my hon. Friend the Minister, is not good enough.
The report’s analysis of funding to date highlights that the Medical Research Council and the National Institute for Health and Care Research contribution was £1 million each, with Cancer Research UK contributing £13 million. Researchers have become increasingly reliant on charities such as Cancer Research UK and Brain Tumour Research. These organisations—do not get me wrong, Mr Deputy Speaker—do fantastic work day in, day out, demonstrating the urgent need for more funding, yet their calls are not being met.
At this point, I would like to pay tribute to one of the most inspirational campaigners and fighters on this cause, my constituent Sue Farrington Smith, who is the chief executive of Brain Tumour Research. She raised £108,000 in the first year of the charity following the tragic loss of her niece Ali, who passed away less than three weeks before her eighth birthday. Sue was subsequently invited to talk about Ali’s Dream at the second UK Brain Tumour Society conference in 2002. She then helped to facilitate the meeting of brain tumour charities, researchers and clinicians at a UK Brain Tumour Society workshop in March 2003 to develop a vision for the brain tumour community. Twelve years since its inception, Brain Tumour Research has provided funding in excess of £15 million to early-stage science and continues to support sustainable research across the UK, raising awareness of brain tumours and campaigning for better outcomes. Sue and everyone at Brain Tumour Research are true heroes, making a daily difference. They deserve to be recognised and credited for all they do. Indeed, Brain Tumour Research continues working with and—as others have mentioned—providing the secretariat to the APPG. I am very grateful for the support provided with the most recent report, as outlined by the right hon. Member for Leeds Central (Hilary Benn).
To conclude, I wholeheartedly support the report’s recommendations, as detailed and outlined by my hon. Friend the Member for St Ives, including the establishment of an NIHR trials database that is readily accessible to all clinicians across the UK, with clearly defined and regularly updated eligibility criteria and location information, and an awareness campaign that is delivered through the NHS to ensure that the trial database is available to both clinicians and patients.
I want to end by looking back at the inquiry evidence sessions and reflecting on what consultant neurosurgeon Babar Vaqas told us:
“As a clinician I want to be able to sit down with my patient and input all the relevant data about their brain tumour type and their treatment pathway and then, to search an up-to-date progressive UK trial registry. This would enable me to discuss appropriate trial options there and then, giving the patient choices that a modern health provider should be able to offer.”
Let us heed those words, embrace the report and make a difference.
John McDonnell (Hayes and Harlington) (Lab)
There is a tradition in the House that people say it is an honour to follow the hon. Member who has just spoken. Usually, most of us do not mean it, but it really was a privilege to be in the Chamber to hear the speech by my hon. Friend the Member for Mitcham and Morden (Siobhain McDonagh). Some Members may not have got the subtleties with regard to Margaret. Margaret is not someone who will take no for an answer. In fact, you are lucky if you are still standing when you have said no to Margaret on many issues—I want to make that absolutely clear. We all send Margaret our love and wish her the very best. I thank my hon. Friend for sharing that, as I know how difficult it was.
We are all coming to the debate with different experiences. I want to thank a lady called Sonya Kean, who approached me some time ago to ask whether I would involve myself in campaigning for brain tumour research funding. Sonya has a son called Conall who suffers from brain tumours. It really brought home to me the distress that this illness causes for the sufferer and for the whole family, but also the incredible courage and fortitude that families display when they have to rise to the challenge and cope with seeking treatment and supporting the family member.
My experience with Sonya and others is that there is a real struggle to be heard at times. There is a struggle in access to treatment but also to find support for some basics. One example is time off for family members when they are taking another member for treatment, and financial support is another. The financial impact can be quite devastating on a family. That relates to the inadequacy of the welfare benefits system, particularly support for carers and carers allowance, to follow on from what my right hon. Friend the Member for Leeds Central (Hilary Benn) said.
What comes across is how wonderful the support and treatment is from incredibly dedicated, devoted, caring and hardworking doctors, nurses, oncologists and others. Paul Mulholland has been mentioned time and again by a number of people, as an example of the standard of care that everyone should receive throughout the NHS. I want to profoundly thank Sonya, Conall and the family, and all the staff and professionals who have been working so hard. I also thank the chair of the APPG, the hon. Member for St Ives (Derek Thomas), and all its members. We have hundreds of APPGs but that is possibly one of the most effective. As a result of its diligent commitment, we have in front of us an extremely professional report that the Government now can use as the guide and agenda for their work. I thank the APPG for all that it has done.
I will not go through all the points that have been made, but there are some fundamental steps that need taking. We have been having a debate for some time around these particular areas of work. The reality is that all the health imperatives require a foundation of funding—conditional funding, I accept that. Last year we debated cancer treatments overall, and the figures are worth getting on the record. Nearly £150 million has been spent on breast cancer research; £130 million on leukaemia research; £130 million on prostate cancer research; £24 million on brain tumour research. The issue today is not just the allocation of funds but access to funds. The report very succinctly but effectively demonstrates what barriers exist and how they could be overcome.
The sufferers and families I have met are at a loss as to why the money that has already been allocated has not really reached the frontline of research. The report gives reasons for that, but it also demonstrates how the hurdles could be overcome relatively easily. It is about ensuring an element of co-ordination. I was shocked to read on page 12 that a number of researchers are simply moving away from research in the field, as my right hon. Friend the Member for Leeds Central and others have mentioned, because they cannot overcome the hurdles in access to funding support.
The next step, as the report mentions, is to address the profound need for leadership. The appeal for a champion who sits across the two key Departments—the Department of Health and Social Care and the Department for Science, Innovation and Technology—is fundamental. We need someone who can bring everything together dynamically and drive the report’s agenda. Frankly, there are plenty of ex-Ministers on the Government Back Benches with enough experience to drive that agenda effectively.
One of the first steps, exactly as the chair of the all-party group says, is to have a ministerial meeting to go through the agenda with members of the all-party group and work with the appointed champion to chase the progress of its implementation. There have been too many reports on different conditions that have been well received but largely shelved because there has been no drive. The APPG has demonstrated that it can work effectively to produce a report, and I think it could work hand in glove with the new champion to ensure that the agenda is implemented effectively. It could happen relatively quickly: we could have an announcement within a fortnight, we could get the new champion in place, the APPG could meet that person and the Minister, and we would then have some drive.
The report makes a recommendation to look at the US system whereby reports are regularly submitted to Congress—in this country it would be this House—on the implementation of the agenda. I may have got this wrong, but I believe that the APPG report includes an element of legislative enforcement so a statutory duty is placed on all those participating.
Another point is about the co-ordination of the different groups, which the APPG seems to have brought together. Not only has it received information and evidence from the individual research bodies, but a discussion has clearly taken place with the pharmaceutical industry. The APPG has almost been like a summit meeting for the different agencies. Trying to formalise that in some form would be really helpful.
On pharmaceutical companies, I want to make a point that might sound discordant but is not. The report makes a recommendation about tax reliefs for pharmaceutical companies. Having looked at tax reliefs in other areas, I am not confident in the role that they have played. The argument is that they will attract venture capital towards the research and development of various drugs and treatments. I am not convinced about tax reliefs, however; I think it is better to award conditional grants, which I think are much more effective. My own view, for which I have been arguing for some time—I have to throw this in—is that we should have a state-run and owned pharmaceutical company so that we can have stable investment, rather than just investment driven by short-term profit.
What I see as the key element in the report, for which I am really grateful to the APPG, is the immediate review of the speed of decision making on the award and allocation of funding for research. That is critical. As my hon. Friend the Member for Mitcham and Morden says, it is also about the speed of access to treatment. People with nine months do not have time to wait for the decision-making processes that we have at the moment, which are literally costing people’s lives. We desperately need to speed up the overall process, and the report lays the foundations for that. I also agree with the report about the ringfencing of funding for research into child brain tumours: it is a tragically neglected area and so many people suffer as a result.
The report says, rightly in my view, that many brain tumour patients and their families are feeling let down by a lack of leadership and drive from the Government. When we explain to people in our constituencies that this is the biggest killer among the under-40s, they begin to wake up and ask why it is happening. Well, I do not want to be here in a year’s time for another debate like this, and another report from the APPG, and to hear that it is still happening because the current report has not been implemented in full. I urge the Government to meet the APPG, establish a champion and start work on this agenda in the next couple of weeks. If they do so, we may be able to turn this around, and perhaps prevent more tragedies such as those that many of our constituents have experienced in recent years.
Mrs Flick Drummond (Meon Valley) (Con)
It is a privilege to speak in the debate. We have heard some excellent speeches. I wish Margaret all the best, and I also wish the Hopkins family all the best, because I have seen the devastation that brain cancer causes. I also lost a close family friend, Matthew Fearn, and I have seen that devastation in the Fearn family. It is horrible, because this is a horrible progressive disease.
I congratulate my hon. Friend the Member for St Ives (Derek Thomas) and the all-party group on their excellent report, which I have only just heard about and have been reading during the debate.
Brain tumour research is receiving growing support from the Government, which is welcome news, but, as we have heard, more can and should be done. Brain tumours are the biggest cancer killer of people under 40 in the UK, but most people only discover that they have a brain tumour when they turn up at A&E, as Margaret did. That is why Brain Tumour Awareness Month is so important.
Matthew Pennycook (Greenwich and Woolwich) (Lab)
We have been talking about research funding specifically, but the hon. Lady is right: many sufferers will only find out that they have a brain tumour when they experience a significant medical event. For many others, however, the symptoms will be present for a number of weeks, if not months. Does she agree that more could be done to raise awareness, among both health professionals and those who are potentially at risk, of the common signs and symptoms of a tumour?
Mrs Drummond
Absolutely. I was going to come on to that. The bad news does not stop at a late diagnosis; the effects of being diagnosed too late are devastating. The bleak reality is that the likelihood of survival for 12 months for someone diagnosed with a brain tumour in A&E is about 30%. We must do better than this for the people who are diagnosed and for their families. All the cancer charities recognise the seriousness of the situation, and I know that the Health Secretary and his colleagues do as well, but how can we improve it? How can we identify the signs earlier?
When I spoke in the debate on brain tumour research in 2016, I praised the work of Professor Geoff Pilkington at the University of Portsmouth. In 2010, the university established a centre of excellence in conjunction with the charity Brain Tumour Research. Professor Pilkington has now retired, but the work that he did made much progress, and is now being continued in other research centres funded by the charity—although, sadly, I think no longer in Portsmouth.
Historically, brain cancer has received only about 1% of the total research funding of all cancers. As we have heard, that was increased with the announcement of a £65 million boost in 2018 from both the Department of Health and Social Care and Cancer Research UK. Centres of excellence need that money, because each brain tumour is unique and needs a different treatment pathway. The biggest gaps in research seem to involve childhood cancers, although brain tumours are the most common type of cancer in children. The understandable desperation of parents—and, as we have heard, of other patients too—has led to families’ seeking treatments, often overseas, that might not always be appropriate for this specific form of cancer, or even taking treatments that are unproven.
Inevitably, how the NHS treats brain tumours will be an area where there is much pressure on more funding. The history of healthcare in this country has always been one of improved diagnosis leading to more demand for clinical facilities, and research opening more treatment pathways. All of this costs money. In areas such as proton beam therapy, while it is good that we have The Christie centre in Manchester and that the UCLH centre is being added to it, it is difficult for patients to travel to those centres, particularly if they have been disabled by a brain tumour, and that is still an area where many people have to seek private treatment.
We need to develop both an academic and a medical pathway for people at the start of their careers to focus on brain tumour work in universities and clinical settings. As the hon. Member for Mitcham and Morden (Siobhain McDonagh) said clearly in her amazing speech, we have some flagship research projects, but their existence is not as secure as that of establishments working on other cancers. One thing that could be done without costing huge amounts of money is support for early-career workers to build up institutional knowledge in the NHS, in the National Institute for Health and Care Excellence and in other guardians of healthcare, which would help to sustain a higher pace of research and development and deployment of treatments.
I end by thanking everyone for the work they are doing in this field. We are at a point where every small improvement in diagnosis and treatment makes a big difference to the lives of people with brain cancers and their families. That comes back the figure I quoted earlier about the time of diagnosis; we have to shift it much further forward from the A&E department, to give people support in dealing with a form of cancer that is so often extremely aggressive.
Sarah Owen (Luton North) (Lab)
I thank the hon. Member for St Ives (Derek Thomas) for securing this important debate. It has truly been a privilege to sit here listening to the heartfelt, knowledgeable and personal speeches that we have heard today. I am sure that everyone will share my awe at the bravery of my hon. Friend the Member for Mitcham and Morden (Siobhain McDonagh). She spoke not only as a formidable MP, but as a formidable sister. I also pay tribute to the ongoing work of Brain Tumour Research and the APPG on brain tumours for their dedication to raising awareness of the issues facing the brain tumour community and their efforts to improve research, treatment, and care outcomes.
Last week, I met my constituents Khuram and Yasmin, who bravely shared their daughter Amani’s story with me, as I will share it in the House today, in an effort to bring about the change and progress that they and we all want to see. Amani was diagnosed with a grade 4 glioblastoma after collapsing on her 22nd birthday in April 2020. As we have heard, treatment options available in the UK for glioblastomas are very limited and the standard of care Amani received failed to stop the tumour growing.
After discussions with Amani’s medical team, the family decided the best and only way forward would be to access a new trial drug, ONC201. Thanks to the generosity of family, friends and strangers, more than £100,000 was quickly raised to help finance that, and her father Khuram took it upon himself to fly to Germany to purchase ONC201—a father who should have been by his daughter’s side, having to raise funds and travel to Germany to get the drug that she needed.
Amani was a strong advocate for brain tumour research and campaigned tirelessly against the lack of funding to tackle this cruel disease. Throughout her ongoing battle, she was a true inspiration, launching a podcast to discuss her diagnosis, organising fundraising events in support of Brain Tumour Research and even receiving a master’s degree at her bedside. Despite her continued strength and determination, Amani lost her fight in February last year and died at the age of just 23. Her family were and are completely devastated, but have continued to campaign ever since in her memory.
Amani’s story and her parents’ determination to honour her legacy cannot fail to move us. However, while the fundraising efforts of that family and every family like them are massive achievements individually, they are a drop in the ocean compared with what we know is needed to tackle brain tumours effectively. We are all aware of the Government funding promise made in May 2018—a total of £40 million made available by the National Institute for Health and Care Research—yet the recent report by the APPG on brain tumours found that, as of January 2023, just £15 million had been awarded from that pot, £6 million of which was not easily identifiable as relevant to brain tumours, as we have heard.
When I spoke to Khuram and Yasmin, their biggest concern was that the funding that is so desperately needed has not materialised, despite the promises. We know that investment in research drives survival rates. As Khuram and Yasmin pointed out, the development and deployment of the covid-19 vaccine is a clear example that breakthroughs can happen in a very short time when funding is available and the political will is there.
Importantly, why are patients and families told to be satisfied with a system where we see unequal levels of care depending on the disease or illness that a person has? When it comes to brain tumours, why do family, friends and the wider community have to dip generously into their own pockets to ensure that people such as Amani have access to medical treatment and newly developed medicines in the hope of fighting their diagnosis?
Tragically, as we have heard from many right hon. and hon. Members, the continued lack of funding for brain tumour research means that Amani’s story is not uncommon. We have heard that brain tumours remain the biggest cancer killer of children and adults under 40. Unlike most cancers, brain cancer incidences are rising, yet no new treatments have been brought forward and the five-year survival rate for patients is still just 12%.
Another Luton resident fighting stage 4 glioblastoma is Moshin, a young father of three and husband. His family are left praying in hope and fundraising at one of the most distressing times of their lives. Should any family dealing with cancer or any health issue be spending their precious time and energy on fundraising for treatment? Another of the main issues identified in the APPG’s report was that the current funding system is unfit for purpose, because it functions in an insular manner. As a result, researchers are moving away from the field of brain tumour research towards other disease areas with more readily available and secure funding.
I will move on to some specific questions to the Minister. Will the Government hear the calls that have been made today and focus on delivering a strategy for adequately resourced, targeted and funded discovery and clinical research, with a joined-up approach from basic science through to clinical trials? Will the Minister share with us where the remainder of the promised money is, and will there be some transparency about where and how the money has been allocated? My right hon. Friend the Member for Leeds Central (Hilary Benn) asked powerfully about where some of the successful bids have come from, why they have been successful and, importantly, why others have not been.
Finally—I hope that the Minister will say yes to this one, because it requires him to make not a spending commitment, only a commitment to spend time with Amani’s parents—will he meet me and my constituents, Khuram and Yasmin, to hear from them directly about the impact that brain tumours have had on their family and how the Government can deliver change to ensure that other families in their position do not have to suffer such a tragedy? I know that it will mean so much to them that the issue is being debated in the House, but I also know that empty words will not cut it. We need firm commitments and an explanation, because no family in Luton North or anywhere else should have to go through what they have.
Lia Nici (Great Grimsby) (Con)
I have to admit that, until the last few days, I knew virtually nothing about brain tumours and brain cancer—after the last few days, I know just a tiny bit more. Often, members of the public are cynical about all-party parliamentary groups, but they do a huge amount of work, including to raise awareness for the public. One of our privileges in this place is that we can work with our constituents, who share their stories with us and tell us why we need to be aware of them so that we can do our jobs to, hopefully, raise awareness and have an impact on Government policy and different types of funding.
I am here because, as in many cases, a constituent, Julie Alison Grimble, wrote to me to ask whether I would attend the debate in order to help raise awareness about brain tumours. Her husband Neil went to the optician for an eye test, which revealed that he needed to be referred to hospital. When he went for his appointment, he was diagnosed with a stage 4 brain tumour. He was only 55 years old. He had two children, a son-in-law and one grandchild at that point. As we have heard with many colleagues’ cases in this debate, he was given a diagnosis of 12 to 18 months for how long he would be with us. Sadly, in 2021, at the age of 56—just in that year —he passed away.
This enables us to realise the amount of work that the APPG and Brain Tumour Research are doing to raise awareness, because if it had not been for Julie writing to me and telling her family story, I would not be able to try to help in a small way to raise awareness. The fact that Neil was diagnosed at stage 4 reveals that we need to make members of the public much more aware of the symptoms or signs to look for. I would like to thank the opticians and ophthalmologists out there, because it is quite often through an eye test that people learn that they need to have treatment. It is not just brain tumours; people can have a whole range of different health issues diagnosed from going to their optician. It is very important that people understand that.
As colleagues have said, the “Pathway to a Cure” report, commissioned by Brain Tumour Research and the APPG, has revealed that, astonishingly, there is an underspend in the funding for research. That also raises the point that it needs to be easier for researchers to apply, and for there not to be so many different types of funds, which makes it more complicated for people to access such research funds. On a more practical level, perhaps people studying medicine, those actually practising it and researchers may not actually be aware of what is available. I was talking to my hon. Friend the Member for Scunthorpe (Holly Mumby-Croft) about this situation, and we know that every treatment comes from a breakthrough, but if there is not enough research, it is highly unlikely that we will be able to have breakthroughs and make connections with other types of cancer as well.
I would just like to thank Julie very much for getting in touch with me. I will continue to work to raise awareness and, I hope, show that we can do some good, which is the value of debates such as this.
Mr Deputy Speaker (Mr Nigel Evans)
We now come to the Front-Bench speeches. I call the shadow Minister.
Liz Kendall (Leicester West) (Lab)
I thank the Backbench Business Committee for granting this debate, the hon. Member for St Ives (Derek Thomas) for securing it, and all those charities and organisations that work so hard to push this issue up the agenda, including Brain Tumour Research and the Tessa Jowell Foundation. I also thank all hon. Members who have spoken on behalf of their constituents so very passionately and powerfully, particularly my hon. Friend the Member for Mitcham and Morden (Siobhain McDonagh), who I thought gave an incredibly brave speech, which moved us all to tears—she did not mean to move us to tears; she meant to move us to action, and that is what we must resolve to do as a result of today’s debate.
We have heard that 16,000 people a year are diagnosed with a brain tumour, 3,200 of whom are diagnosed with glioblastoma, the most common primary brain tumour in adults. Getting this diagnosis can be utterly devastating —life can change in the blink of an eye—because we know that more children and adults under the age of 40 lose their lives to brain tumours than to any other cancer. They take the lives of more women under 35 than breast cancer, and the lives of more men under 70 than prostate cancer. I think we owe it to all those who have been diagnosed with a brain tumour and their families to set out a proper plan to improve outcomes. In particular —and I think this is the most important point for all of us here today—what are we going to do differently in the next 10, 20 or 30 years, because nothing has changed in the past 30 years? If we keep repeating what we have done before, we will only get the same result.
But I do not believe that it has to be this way. We have seen huge improvements in survival rates for so many other cancers. We know that 54% of people diagnosed with leukaemia will now survive for more than five years, and 85% of those diagnosed with breast cancer will survive for five years or more. That is an incredible success story, and I think that we need to look long and hard at how that was achieved. What changes were made, yes, in research funding, but also in training, in clinical trials, and in other forms of treatment and support?
We know that when we put our minds to it—when we have leadership, focus and a plan for action—we can deliver results. We must do that here. Fewer than 12% of people diagnosed with a brain tumour will survive beyond five years and, as my hon. Friend the Member for Mitcham and Morden said, the average survival for patients with glioblastoma is only nine months. That has not changed for 30 years. We need a different approach.
Many hon. Members have rightly said that proper investment in research is vital. Since 2002, only 1% of the national spend on cancer research has been allocated to brain tumours. That is around £126 million. Over the same period, just over £550 million was spent on leukaemia research, and £775 million on breast cancer research.
I do not think that anyone doubts that has made a real difference to the outcomes we have seen, so I hope that, when the Minister stands up to reply, he will say how he will deal with this issue. We know how this works: more research goes into areas where more people are suffering from a condition, but that cannot be the answer. I hope that the Minister will say whether the Government intend to change those funding proportions, and if so, how.
However, alongside investment there must be reform, because the current system is not working. We have heard from many hon. Members that, in response to the campaigning of the late Dame Tessa Jowell, the Government committed £40 million in funding on brain tumours to be made available via the National Institute for Health and Care Research. However, as of January 2023, just £15 million of that had been awarded. I would like the Minister to spell out why that has happened and what he will do to change it.
We must be much less risk averse when allocating research funding, and we must ensure that the people who are making the decisions fully understand the issues around brain tumours and research. I think that the Minister needs to explain whether NIHR actually has that expertise on its board, and if not, what he will do to change it.
We also must look at the issue, which many hon. Members have spoken about, of research funding getting stuck in lots of different silos. The Department of Health and Social Care and the Department for Science, Innovation and Technology must work together much more closely to ensure that early-stage research quickly progresses to clinical trials, and then to the bedsides of patients via new treatments. Is there any sort of group or format to do that? If there is, it is obviously not working, so how does he intend to change that? That is one of the key asks of the APPG on brain tumours, so I think that we really need to get to the bottom of it.
I now want to focus on the issue of clinical trials—although, my hon. Friend the Member for Mitcham and Morden spoke so powerfully that I almost feel that I should just sit down and let that speak for itself. However, I spoke to Professor Paul Mulholland, who is a medical oncologist who exclusively treats brain cancer, at University College Hospital, the National Hospital for Neurology and Neurosurgery, and Mount Vernon Cancer Centre. He is, rightly, extremely concerned about how few, if any, patients with glioblastoma in this country are currently on clinical trials. Unless we significantly increase both the number and the size of those trials, we will never make progress and patients will be forced, if they have the means to do so, to go to other countries. That is not acceptable.
How are we going to do that? Professor Mulholland believes that the first change required is for all medical oncologists to receive mandatory training in primary brain cancer. We may be told that they receive training in brain cancer, but that usually relates to secondary brain cancer. He believes that there needs to be a minimum period of specific training, because it is not currently required. That will increase understanding of the issues and possibly the propensity to support and understand the risks and benefits of clinical trials.
The second change required is clear targets for increasing the number of brain tumour patients on drugs trials, starting with 200 a year and increasing to 1,000 a year in five years’ time. We must have a goal and must know how we are going to get there. The third change required is that the pharmaceutical sector must be involved— no ifs, no buts. Professor Mulholland believes that the Government need to have a very targeted working group, with Cancer Research UK, the pharma companies and Health Education England saying, “We’re going to make this happen,” and explaining how and when.
I know that the Minister has received many requests for meetings during this debate, but I urge him to meet Professor Mulholland to talk through those ideas. They are different and are not necessarily what others are calling for, but he has an idea about how things need to change. We need change, so I hope that that is what happens.
For all those who have died from brain tumours, for the families who have felt that devastating impact, for all those who are currently going through all the stress, strain and trauma of treatment, and for all the families who love them and want to make a difference, we need change and we need to get it right, and I really look forward to hearing the Minister’s response.
The Minister for Health and Secondary Care (Will Quince)
First, let me congratulate my hon. Friend the Member for St Ives (Derek Thomas) on securing this debate on a very important topic and for his personal commitment to making progress on this devastating condition. Like him, I pay tribute to the life and work of Tessa Jowell, who, after a long and distinguished career on these Benches, left a legacy that lives on in the numerous initiatives that the Government are supporting.
I also thank hon. Members from across the House for their valuable interventions and comments today— I will come to them in turn—especially in regard to NIHR support for cancer research, the Tessa Jowell Brain Cancer Mission and our commitment across Government to cancer research funding.
Before I turn to the contributions of individual Members, I want to touch on Government commitments, particularly the Baroness Tessa Jowell Brain Cancer Mission. As my hon. Friend the Member for St Ives said, in 2018 the Government announced funding through the NIHR of £40 million over five years for brain tumour research as part of the brain cancer mission. I would like to draw on Tessa’s words. She said that this
“is not about politics but about patients and the community of carers who love and support them. It is…about the NHS but it is not just about money. It is about the power of kindness”.—[Official Report, House of Lords, 25 January 2018; Vol. 788, c. 1169.]
We are grateful to all those who have provided care and support and who have campaigned for better funding for research, and to those involved in brain tumour research for keeping this nation at the forefront of scientific progress. Research, as many Members have set out this afternoon, remains key to progress. There are many challenges with brain tumour research, some of which have been set out today, but as Tessa implored us, we must not leave this in the “too difficult” box. I will now try to address the comments made by hon. Members in turn.
My hon. Friend the Member for St Ives rightly praised the work of the Realf family, whose petition led to significant funding and focus on brain tumour research. He rightly pushes us to ensure that we are spending the allocated funding on brain tumour research, and he asks us to look at the NIHR’s processes to make them more user-friendly. He followed the report in calling for a brain cancer champion, as did the right hon. Member for Hayes and Harlington (John McDonnell). I want us to be world leading in this sphere, so I will take that point away and ask the Secretary of State. Indeed, my hon. Friend the Member for St Ives might pick this up and run with it himself, given how he runs the APPG and given this superb report.
I will come back to research more generally a little later, but my hon. Friend talked about applications and the application process. As part of the £40 million fund, all the applications assessed as fundable in that open competition have been funded—in total, that is 13 of 95 applications, and a further three are under consideration. I very much encourage researchers to make those applications. We have to get it right, and I will come back to this later.
My hon. Friend touched on funding committees, which play a hugely important role. We have a diverse range of applications for funding and, as a result, there is a broad range of expertise sitting on the panels. The panels may or may not include people who specialise in brain tumour research. I understand the frustration of applicants, and work is already being done by the Tessa Jowell Brain Cancer Mission, through customised workshops and the work of researchers, to enable people to resubmit their funding applications after understanding why they were not successful.
The right hon. Member for Leeds Central (Hilary Benn) rightly praised the work of Brain Tumour Research. I understand his point about not only patients but consultants hearing the phrase, “There is nothing more I can offer or do for you.” We have to do what we can to change that. He rightly says the brain is a very complex organ, which is why treatment and research are so complicated—I will come back to this point if I have time.
My hon. Friend the Member for Scunthorpe (Holly Mumby-Croft) talked about the heartbreaking experience of David. She asked us simply to get the money into the hands of researchers, and I wish it were that simple. Understandably, this does not sit in the hands of Ministers—it would be totally inappropriate if it did. It sits in the hands of clinicians and experts in this field, but I completely understand the sense of urgency with which she makes the point. We spend around £1.3 billion a year on research, and we have to ensure that it is well spent and leads to research that gets treatments and drugs to patients in this country and around the globe.
The hon. Member for Mitcham and Morden (Siobhain McDonagh) gave the most powerful testimony, sharing her sister Margaret’s experience. I am so very sorry to hear of her experience, which must have been very difficult to share. She spoke about cancer diagnosis and treatment, and we have come on so much, but I recognise that this is not universal across all cancer types and that we have much more to do.
The hon. Lady made a very strong case for clinical trials, and she spoke about the need to travel abroad. We cannot do every clinical trial in the UK, although I sometimes wish we could. There is global competition, but I give her my personal assurance that clinical trials are high on my agenda. I want to make sure that our United Kingdom has the best environment for clinical trials. We have launched the O’Shaughnessy review, and we are working with the NHS, the MHRA and NICE. We are trying to encourage patients through the NHS app to sign up to clinical trials. Of course, raising awareness of clinical trials is a huge area of interest and importance for me.
Siobhain McDonagh
I completely understand all the work that the Minister and everybody else is doing, but can he explain why it is not happening?
Will Quince
I will specifically address brain tumour research, but clinical trials are taking place in acute trusts across the country. There are fewer clinical trials in this area than I would want, and I will explain why a little later. Finally, I pass on my very best wishes to Margaret.
My hon. Friend the Member for Buckingham (Greg Smith) urges us to act on the report’s recommendations, and he is right to do so. I will look at those recommendations very carefully. He touched on the £40 million, and I will come on to that a little later. He also mentioned childhood brain tumours. There is insufficient time to go into the level of detail I would want to on that subject, and I would be happy to meet him and members of the all-party group to discuss what more we can do on childhood brain tumours and the treatment thereof.
The right hon. Member for Hayes and Harlington talked about the courage and fortitude of families. He shared Sonya’s experience and talked about the importance of support for loved ones, and I will raise those issues with my counterparts at the Department for Work and Pensions. My hon. Friend the Member for Meon Valley (Mrs Drummond) shared the impact on the Fearn family, which outlines why it is so important that we get this right. She touched on the importance of awareness, and how in this area there is a high prevalence of late presentation and late diagnosis, and the impact that has on prognosis.
The hon. Member for Luton North (Sarah Owen) told Amani’s story and how the family had to fundraise to travel to take part in an international clinical trial. Of course, I send my condolences to Amani’s family, and I would be happy to meet Khuram and Yasmin to discuss this further. The hon. Lady asked where the money allocated is. It sits within NIHR and remains there; funding is allocated and it awaits suitable, fundable applications, so that is where we need to focus our efforts.
My hon. Friend the Member for Great Grimsby (Lia Nici) rightly praised the work of the all-party group, which probably makes this the right time to turn to the report, “Pathway to a Cure”. I very much welcome the group’s investigation and report. I acknowledge the problems and issues that have been identified. Let me be clear: we want to fund more high-quality research to accelerate the field and help patients. The report makes a number of recommendations for actions by research funding agencies, such as the MRC and NIHR, on co-ordinating action and making funding available. Crucially, the report is clear that to make advances in brain tumour research we must bring together diverse disciplines. There are detailed recommendations here, with potentially far-reaching consequences, and the MRC, NIHR and I will consider responses and come back to colleagues.
Members from across the House will understand that this debate is not necessarily the place for a detailed response to the report and every recommendation. Notwithstanding the strong case made today on the importance of research, we have to tread carefully. This is not the first condition into which I have probed and asked lots of questions about why we have not been funding all the research, and why funding is sitting unallocated, given the bids that have come in. We have to tread carefully because the clinicians and scientists rightly push back, saying that lowering the scientific quality bar for access to scarce public research funds, which would not be won in open competition, is unlikely ultimately to be a good solution. We must get this right, and at the heart of that is ensuring that we support applicants to make high-quality bids, which will then translate into funding awards. Of course, we want to fund the best science to help patients and ensure that our country remains at the forefront of scientific progress.
All Members, from across the House, rightly mentioned the crucial importance of research in tackling cancer. A theme of the report and the debate has been that of co-ordinating action along the translational pathway; that starts with the fundamental science and early translation, typically supported by the MRC, and goes through to the applied health and care research, which is funded by the NIHR. Working with the NIHR, the MRC has developed guidance and toolkits for teams to help them to navigate the scheme that is best suited to their proposal. However, I have heard today that we are not giving the right support to those making applications, and where applications are rejected we need to look into that further.
Hilary Benn
I am listening carefully to the Minister. What does he say to the argument that we heard during the inquiry that the people who sit in judgment, quite properly, on bids might not have a sufficient degree of expertise in this area to be able to judge whether the research proposals are suitable to be funded? I do not expect an answer now, but will he undertake to go away and look at that point?
Will Quince
I thank the right hon. Gentleman for his question, and I shall try my best to answer it. It is a question that I listened to very carefully when he posed it in his contribution, and it is one that I have posed myself when looking at the NIHR and what it does. The committees for NIHR and the programmes that come forward receive a diverse range of applications, which is understandable. Their make-up, therefore, is that of a broad range of expertise. As I said a few moments ago, they may or may not contain experts in the field of brain tumour research. However, having said that, the NIHR committees then use peer review from appropriate experts, which would include brain tumour expertise as relevant to the brain tumour proposal that is under review in each individual case. That is there deliberately to inform their decision-making. They co-opt particular expertise on to the committee, which is an option always available to NIHR if the committee needs that particular input. If clinicians and scientists are telling the right hon. Gentleman that that is not happening, or is not happening to the degree that we would want and expect it to, I would want to take that away and look at that further.
I wish to come back to a comment that the right hon. Gentleman made about brain tumours and why they remain a challenging area for research. There is the complexity of the brain itself as an organ, and the way that perception, memory, and emotion— everything the brain does—can be affected differently by different types of tumour. Brain tumours are different diseases that can differ in terms of histology, molecular characteristics, and clinical behaviour, meaning that many different treatments must be developed. Brain tissue is precious and obtaining it for research purposes can be difficult. Obtaining biopsy samples is risky and invasive, and animal models are of limited applicability. Additionally, the community of active clinical researchers is relatively small—it is certainly small in relation to the scale of need. This all makes research on brain tumours challenging, as has been well articulated today, and progress, if we are to make it—and I am determined that we will—requires a collaborative effort between researchers, clinicians, and funding agencies.
How do we grow the field of brain tumour research? This was a challenge from the shadow Minister. We have been taking action to grow the field by supporting researchers to submit high-quality research bid proposals. That has been supported by working with the Tessa Jowell Brain Cancer Mission, which hosts workshops for researchers, and provides research training specifically for clinicians.
Since the initial Government announcement of £40 million over five years ago, we have spent £33.9 million on brain cancer research across Government. I am conscious that there is a difference in the two figures, but that is because we are combining spending from UK Research and Innovation with the spending of NIHR. However, as I have made clear already, we want to spend more and the NIHR welcomes funding applications for research into brain tumours, and the Department of Health and Social Care priority call on brain tumours remains open. Critically, all applications that have been assessed as “fundable” in open competition have been funded, and that will continue.
As I have said, brain tumour research is one of the most difficult scientific challenges of our age. We need to invest across the translational pipeline, from fundamental science through to effective treatments. These are long-term challenges and we are committed to them for the long term. To be clear, the £40 million announcement was a signal to the research community that we are serious about funding research in this space. It is not a ceiling. If we can spend more on the best quality science, let me assure the House that we will do so. I understand and share the frustrations that only a proportion of the £40 million on brain tumour research has been allocated so far, but this funding will remain available. I genuinely believe that the funding for brain tumour research is promising and we look forward to considering the all-party group recommendations with colleagues across Government. I am confident that the Government’s continued commitment to funding will help us make progress towards effective treatment.
Liz Kendall
As the Minister may be about to close, I would like to ask him whether he would respond to a request to meet Professor Mulholland about the other issues that he raised around training and clinical trials, because that would make a hugely useful contribution to the debate.
Will Quince
The hon. Lady pre-empts not only that I am coming to a close, but my final response. I have a little more time than I would ordinarily, but in closing such debates, one never quite gets the opportunity to answer every single question. I have never turned down a meeting with a colleague, and I do not intend to start doing so today—it is important that we consider some of the issues that have been raised this afternoon, including the report’s recommendations—and, of course, I would be very happy to meet senior clinicians and scientists in the field as well.
In closing, I want to say how much I appreciate the vital work of my hon. Friend the Member for St Ives as chair of the all-party parliamentary group on brain tumours, of all those who have spoken so powerfully today, and of the powerful advocacy for more research on brain tumours and better treatments and care for patients, not least in last week’s report and in this important debate. It has been my pleasure to respond to the powerful points that everyone has made.
Mr Deputy Speaker (Mr Nigel Evans)
I call Mr Derek Thomas for the final word.
Derek Thomas
I have noticed that Peter and his daughter Maria, who introduced that first petition all those years ago in 2015, are here. I am sure that if they were to do it again, they would get a lot more than 120,000 people signing the next petition.
The nature of debate in this place can be very toxic, but not today. I thank the right hon. Members for Leeds Central (Hilary Benn) and for Hayes and Harlington (John McDonnell), my hon. Friends the Members for Scunthorpe (Holly Mumby-Croft), for Buckingham (Greg Smith), for Meon Valley (Mrs Drummond) and for Great Grimsby (Lia Nici), and the hon. Member for Luton North (Sarah Owen). I also thank the hon. Member for Mitcham and Morden (Siobhain McDonagh). We cannot go away from this place and ignore the lived experience of her sister, Margaret, and her family.
The Minister has heard those contributions, and he has the report and each of the recommendations. I am encouraged that the discussion does not end here and that the work will continue. It must, because far too many lives depend on it. I appreciate the time that you have given us this afternoon, Mr Deputy Speaker.
Mr Deputy Speaker
Thank you very much. May I say what a privilege it has been to chair this debate?
Question put and agreed to.
Resolved,
That this House has considered brain tumour research funding.
Sarah Owen (Luton North) (Lab)
On a point of order, Mr Deputy Speaker. We understand that the Government have just announced huge delays to High Speed 2 and other road and active travel projects via written ministerial statement at nearly 5 o’clock on Thursday afternoon. That is an outrageous attempt to avoid scrutiny for what is a very significant announcement that should have been made to this House first. Tens of thousands of jobs and billions of pounds of economic growth depend on that project. The Secretary of State should have had the decency to come to the House and explain to Members why the Government are doing that. Have you been notified of any ministerial statement on this important topic?
Mr Deputy Speaker (Mr Nigel Evans)
I thank the hon. Lady for her point of order and for giving forward notice of it. She is right that a written ministerial statement was laid not so long ago. There are two points here. The first is that Mr Speaker has made it absolutely clear that announcements of this type should be made to the House of Commons first—we understand that journalists were briefed this afternoon.
The next Transport questions is after Easter, and we are not sitting tomorrow or this weekend, clearly, so it will be at least three days before Members have an opportunity to question Ministers about what is a substantial statement. Although the Chair does not have the power to bring Ministers to the Dispatch Box, there has to be an expectation that Members will have the earliest opportunity to question Ministers on this statement. I hope that the Minister will take that back to the Department.