Derek Thomas – 2023 Speech on Brain Tumour Research Funding
The speech made by Derek Thomas, the Conservative MP for St Ives, in the House of Commons on 9 March 2023.
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.
