Ministers have spent just £15m over five years on research to combat brain tumours, the leading cause of death for adults and children under 40, while bragging about handing over £40m, MPs have found .
The revelation came in a damning report seen by The Guardian and due to be published this week by the All Party Parliamentary Group (APPG) on brain tumors after a two-year investigation.
The research system is “unfit for purpose”, patients are denied access to clinical trials and families have been defrauded by promises of “millions of pounds of investment that have not materialised”, says the report.
Louise Fox, whose teenage son George died in April last year of an aggressive brain tumor, called for urgent answers about the “missing millions”.
“We lost our brave and inspiring son George at the age of 13 to glioblastoma and we simply cannot understand why there are so few treatment options available for this horrible disease today,” he said. “Our anger and frustration is compounded by the fact that even though money was promised, it is not reaching the people who need it so desperately to make a difference.
“We can’t help but think that our son would have had an opportunity if he had been given it for the investigation. How long must we fight to get answers about these missing millions?
Announcing the first of two £20m brain tumor research investments in 2018, Jeremy Hunt, then health secretary, said: “While survival rates for most cancers are at record levels, the Prognosis for people with brain tumors has barely improved in more than a generation. .”
The “big increase” in funding represented “an opportunity to create a real game changer in survival rates for one of the deadliest forms of cancer,” Hunt said.
However, £25m of the pledged sums never materialised, according to the report, and of the £15m awarded, £6m “are not readily identified as relevant to brain tumours”. Five years later, there are no new treatments. The chances of survival of patients remain low.
Conservative MP Derek Thomas, who chairs the APPG, said the £40m pledged had given “reason for optimism” after a historic shortage of funding for brain tumor research, which had received just 1% of spending. Total national cancer research since records began. .
“However, our inquiries have revealed a worrying lack of deployment of these funds, with only £15m reaching the hands of researchers in the five years since it was pledged,” he said. “We hear that the current system is too complicated, it doesn’t connect lab work with what happens in clinics, that there isn’t a robust, up-to-date database for people to understand if they might be eligible for clinical trials. , and that very little of the money previously promised has reached the hands of the researchers who can make a difference.”
The APPG report also highlights a “valley of death” in which potential new treatments developed in the laboratory “do not reach patients” due to unnecessary bureaucracy. Some children are denied access to clinical trials, and the national brain tumor research database is “unreliable.”
“The sad reality is that brain tumor patients don’t have the luxury of time,” Thomas said. “Government must act now to recognize brain tumor research as a critical priority, appoint a champion, and allocate sufficient funding to make a difference.”
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Fox is committed to working tirelessly to campaign for better treatment options for others affected by the disease, “because that’s what George would have wanted,” she said. “Despite the horror of never seeing our son become a man, and perhaps because of it, we will never stop trying to make a difference for future young brain tumor patients.”
Sue Farrington Smith, chief executive of the Brain Tumor Research charity, described the £25m shortfall in funding as “unbelievable”. “It really is time for the government to stop talking and recognize brain tumor research as a critical priority that needs your leadership and real action,” she said.
When approached by The Guardian, the Department for Health and Social Care suggested that even less than £15m had been spent, but stressed that the areas of spending had not been accounted for.
“We know that brain cancer can be a devastating disease and we want to work with researchers, doctors and others to redouble our efforts to find therapies and new treatments,” a spokesperson said.
“The £40 million we have allocated so far has supported 12 research programmes, including testing the efficacy of different radiotherapies and a treatment for epilepsy in patients with brain tumours. We have also invested in infrastructure support and are taking steps to grow the research community, such as workshops for investigators and training for clinicians, to encourage further study.”