Ministers have spent only £15m in five years on research into tackling brain tumours, the biggest killer of adults and children under 40, while boasting about delivering £40m, MPs have found.
The revelation emerged in a damning report seen by the Guardian that is due to be published this week by the all-party parliamentary group (APPG) on brain tumours after a two-year inquiry.
The research system is “unfit for purpose”, patients are being denied access to clinical trials, and families have been let down by promises of “millions of pounds of investment which hasn’t materialised”, the report says.
Louise Fox, whose teenage son George died in April last year from an aggressive brain tumour, called for urgent answers on the “missing millions”.
“We lost our brave, inspiring son George at the age of 13 to glioblastoma and simply cannot understand why, in this day and age, so few treatment options are available for this horrific disease,” she said. “Our anger and frustration is compounded by the fact that, although money has been promised, it isn’t getting to the people who so desperately need it in order to make a difference.
“We can’t help but think our son would have had a chance if it had been given for research. How long must we fight to get answers on these missing millions?”
Announcing the first of two £20m brain tumour research investments in 2018, Jeremy Hunt, then the health secretary, said: “While survival rates for most cancers are at record levels, the prognosis for people with brain tumours has scarcely improved in over a generation.”
The “big uplift” in funding represented “a chance to create a genuine step-change in survival rates for one of the deadliest forms of cancer”, Hunt said.
However, £25m of the sums promised never materialised, the report found, and of the £15m awarded, £6m is “not easily identifiable as relevant to brain tumours”. Five years later, there are no new treatments. Survival chances for patients remain poor.
The Conservative MP Derek Thomas, who chairs the APPG, said the £40m promised had given “cause for optimism” after a historic underfunding of research into brain tumours, which had received only 1% of the total national spend on cancer research since records began.
“However, our investigations have revealed a concerning lack of deployment of these funds, with just £15m reaching the hands of researchers in the five years since it was promised,” he said. “We are hearing that the current system is too complicated, it doesn’t connect laboratory work with what is happening in clinics, that there is no up-to-date and robust database for people to understand if they could be eligible for clinical trials, and that far too 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 “fail to reach patients” because of unnecessary red tape. Some children are being denied access to clinical trials, and the national brain tumour research database is “not reliable”.
“The sad fact is that brain tumour patients do not have the luxury of time,” Thomas said. “The government must act now in order to recognise brain tumour research as a critical priority, appoint a champion, and ringfence sufficient funds to make a difference.”
Fox is committed to working tirelessly to campaign for better treatment options for others afflicted by the disease, “because it is what George would have wanted”, she said. “Despite, and perhaps because of, the horror of never seeing our son grow into a man, we will never stop trying to make a difference for future young brain tumour patients.”
Sue Farrington Smith, the chief executive of the charity Brain Tumour Research, described the missing £25m in funding as “unbelievable”. “It really is time the government stopped talking and recognised brain tumour research as a critical priority that needs their leadership and real action,” she said.
When approached by the Guardian, the Department of Health and Social Care suggested that even less than £15m had been spent, but stressed that areas of spending had not been accounted for.
“We know brain cancer can be a devastating disease and we want to work with researchers, clinicians and others to redouble our efforts to find therapies and new treatments,” a spokesperson said.
“The £40m we have allocated has so far supported 12 research programmes, including analysing of the effectiveness of different radiotherapies and a treatment for epilepsy in patients with brain tumours. We have also invested in infrastructure support and we’re taking action to grow the research community, such as workshops for researchers and training for clinicians, to encourage further studies.”
