(1 year, 8 months ago)
Commons ChamberA 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 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.