[Relevant documents: First Report of the Petitions Committee, Session 2015-16, Funding for research into brain tumours, HC 554, and the Government response, Session 2016-17, HC 292; Oral evidence taken before the Petitions Committee on 15 January 2019, on Funding for research into brain tumours, HC 1792, Session 2017-19; Oral evidence taken before the Petitions Committee on 27 May 2021, on Brain tumour and childhood cancer research, HC 242, Session 2021-22; Correspondence between the Petitions Committee and the Parliamentary Under Secretary of State at the Department of Health and Social Care, on brain tumour and childhood cancer research, dated 15 June and 7 July 2021; Correspondence between the Petitions Committee and the Chief Executive of UK Research and Innovation, on brain tumour and childhood cancer research, dated 15 June and 13 July 2021; e-petition 105560, Fund more research into brain tumours, the biggest cancer killer of under-40s; e-petition 300027, Fund research for childhood cancers with the worst survival rates]
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.
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?
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.
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?
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 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.
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.
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.
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.
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.
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.
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.
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.
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.
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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.
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.
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.
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.”