Brain Tumour Research Funding

Greg Smith Excerpts

Thursday 9th March 2023 Commons Chamber

[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.