A woman from Pinner who lost her son to a brain tumour is among families, charities and scientists who have welcomed a new cross-party report demanding urgent action to help those affected by the disease.
The All-Party Parliamentary Group on Brain Tumours (APPGBT) is calling for wide-ranging changes to be made in how research into the disease, the biggest cancer killer of children and adults under the age of 40, is funded.
The APPGBT inquiry report: Pathway to a Cure – breaking down the barriers, launched yesterday at a Westminster reception, jointly hosted by Brain Tumour Research (who drafted the report and provide the secretariat to the APPGBT) and the Tessa Jowell Brain Cancer Mission calls for wide-ranging changes to be made in how research into the disease is funded.
The report calls out the current funding system as ‘unfit for purpose’ and claims patients and families ‘continue to be let down’.
Helen Forbes-Low lost her son William to a brain tumour in 2017 when he was 17.
William was diagnosed with a high-grade medulloblastoma at the age of five and underwent surgery and gruelling radiotherapy and chemotherapy treatment which eventually stabilised him. However, the cancer returned again when he was 13 and William endured further surgery, chemo and radiotherapy, as well as a stem cell transplant.
Helen said: “Tragically, three years later, new tumours were found in William’s spinal cord and treatment options were severely limited, but we exhaustively investigated every possible drug trial in a desperate, but fruitless attempt to find something appropriate. Nothing was suitable and we lost William six weeks before his 18th birthday.”
Helen and her family set up The William Low Trust, a Member Charity of Brain Tumour Research, which funds a PhD researcher at the Brain Tumour Research Centre of Excellence at Queen Mary University of London.
“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% of those diagnosed with a brain tumour survive beyond five years compared with an average of 50% 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” added Helen.
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 welcome shift in focus, especially considering the historic underfunding of research into brain tumours which has received just 1% 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 and although the national investment in brain tumour research is increasing, thanks to Cancer Research UK, our own contributions and those of other charities, brain tumour research still represents just 1% of brain tumour research funding since records began in 2002.
“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.