Grimsby mum whose son, 29, tragically died of a brain tumour condemns lack of funding
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A Grimsby woman whose “courageous” son tragically died of a brain tumour has condemned the Government for allocating just £15 million for brain tumour research – £25 million less than what they originally pledged.
Diane Campling, who lost her son James Clifford Campling, 29, in 2018 to a glioblastoma (GBM) brain tumour, has branded the lack of funding “totally unacceptable”.
She is among many families, charities and scientists across the UK who have welcomed a new cross-party report which demands urgent action to help those affected by the devastating condition – which sees just 12 percent of its sufferers surviving beyond five years.
Read more: Scunthorpe woman backs calls for more brain tumour support after husband’s death
The All-Party Parliamentary Group on Brain Tumours (APPGBT) inquiry report, Pathway to a Cure – Breaking Down the Barriers, launched on Tuesday, February 28 at a Westminster reception. It calls for urgent changes to be made in how research into brain tumours is funded.
Historically, just one percent of the national spend on cancer research has been allocated to brain tumours.
The groundbreaking report says the current funding system is “unfit for purpose” and claims patients and families are consistently being let down, despite the government’s promise of millions of pounds of investment which has not materialised. It also highlights how terminally ill children are denied access to last resort clinical trials despite their parents’ wishes.
Diane said: “Just after Tessa Jowell died in 2018, the Government pledged to invest £40 million into brain tumour research, but so far just £15 million of this has been allocated. Yet just 12 percent of those diagnosed with a brain tumour survive beyond five years compared with an average of 50 percent across all cancers.
“This is totally unacceptable for the thousands of families who face the news each year that a loved one has been diagnosed with this devastating disease.”
James, an aeromedical nurse in the RAF, sadly died from a brain tumour in 2018. He was diagnosed two years previously after suffering seizures. He underwent an awake craniotomy and further treatment, but exhausted all treatment options on the NHS.
Incredibly, he raised £30,000 to fund research into brain tumours – even when he knew the average survival for a GBM was 12 to 18 months.
Diane said: “Along with friends, James spent the months after his diagnosis raising £30,000 to fund research into brain tumours, which included climbing the Yorkshire Three Peaks in under 12 hours for Brain Tumour Research. He was so courageous and was determined to make the most of the time he had left.”
After James’ death, Diane set up the James Clifford Campling Trust, which funds research into glioblastoma and offers funding to people over 18 with a life-limiting condition to help them reach their goals.
Derek Thomas MP, who chairs the APPGBT, said: “A total of £40 million in investment has been promised since 2018. This gave cause for optimism and heralded a very wecome shift in focus especially considering the historic underfunding of research into brain tumours which has received just one percent of the national spend on cancer research since records began.
“However, our investigations have revealed a concerning lack of deployment of these funds with just £15 million reaching the hands of researchers in the five years since it was promised.
“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 sad fact is that brain tumour patients do not have the luxury of time. 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.”
Sue Farrington Smith MBE, the chief executive of Brain Tumour Research, said: “For too long Governments have put brain tumours on the too difficult to think about pile. Five years after the Government announced £40 million for brain cancer research, just £15 million has been spent. This is unbelievable.
“Patients and families continue to be let down by a funding system that is built in silos and not fit for purpose. There needs to be a strategic plan using joined up thinking across the pathway of discovery, translational and clinical research.
“We thought the will was there but have been met with empty promises. Brain tumours still kill more children and adults under the age of 40 than any other cancer.
“It really is time the Government stopped talking and recognised brain tumour research as a critical priority that needs their leadership and real action.”
To read the report in full, go to www.braintumourresearch.org/appgbt-briefing-pathway-2023
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