A BEREAVED Rugby dad who lost his son to a brain tumour has welcomed a new report demanding urgent action to help those affected by the disease.
Peter Realf lost his son Stephen, 26, to the disease in 2014 – and has joined families, charities and scientists in hailing the launch of the landmark cross-party report.
The All-Party Parliamentary Group on Brain Tumours (APPGBT) has launched the report Pathway to a Cure, which calls for changes to the funding of research into the disease – the biggest cancer killer of children and adults under the age of 40.
It says the current funding system is unfit for purpose, and claims patients and families continue to be let down despite the Government’s promise of millions of pounds of investment which has not materialised.
Peter has been campaigning for change alongside the charity Brain Tumour Research since 2015, when his family launched a petition calling for funding into brain tumours to be increased to £35million a year to bring it into line with funding for other charities.
It attracted more than 120,000 signatures, becoming the first petition to prompt an inquiry by the new House of Commons Petitions Committee.
The subsequent 2018 report prompted the Government to announce it would allocate £20million for research into brain tumours, boosted by a pledge of £25million from Cancer Research UK.
Peter said: “Stephen left behind a large circle of family and friends deeply affected by what they had witnessed happening to him.
“Our family’s situation is far from unique, and survival rates for brain cancer patients remain largely unchanged over the last 30 years.”
Stephen was diagnosed with a low-grade astrocytoma brain tumour aged 19 while he was training to become a pilot in the RAF. He underwent surgery to remove an orange-sized tumour, losing his authority to fly or drive a car.
Two years later the tumour started re-growing and had become high-grade. Stephen underwent gruelling radiotherapy and chemotherapy.
Despite receiving all the standard NHS treatment, Stephen ran out of options and passed away six years after diagnosis, having lost the ability to speak, eat or even get out of bed.
Peter added: “It was only through Stephen’s diagnosis and subsequent death that I realised how desperately underfunded research into brain tumours was and how few treatment options are available for this horrific disease. I was angry to learn that there had been next to no change in the last two decades in the way his brain tumour is treated.
“The £20million pledged by the Government in early 2018 I regard as Stephen’s legacy. Just after Tessa Jowell died in 2018, the Government promised a further £20million into brain tumour research – but so far just £15 million of this £40million in total has been allocated.
“Yet just 12 per cent of those diagnosed with a brain tumour survive beyond five years, compared with an average of 50 per cent across all cancers.
“This is totally unacceptable for the thousands of families each year who face the news that a loved one has been diagnosed with this devastating disease. I remain determined to push this through for Stephen.”
The APPGBT report, which features Stephen’s story, highlights how terminally ill children are denied access to last resort clinical trials, despite their parents’ wishes.
And it shines a light on the so-called ‘valley of death’ in which potential new treatments discovered in the laboratory fail to reach patients because of complexity in the way research is funded.
APPGBT chair Derek Thomas MP said: “£40million has been promised since 2018. This heralded a welcome shift in focus, especially considering the historic underfunding of research into brain tumours which has received just one per cent of the national spend on cancer research since records began.
“However, just £15million has reached researchers in the five years since it was promised.
“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, and ringfence sufficient funds to make a difference.”
Sue Farrington Smith MBE, the chief executive of Brain Tumour Research, said: “Survival rates for brain tumour patients have remained unchanged over recent decades and, despite improvements in neurosurgical techniques, supporting care, and more refined imaging and molecular diagnostics, we are yet to see the upward trajectory of other malignant diseases such as breast cancer and leukaemia.”
Visit www.braintumourresearch.org/appgbt-briefing-pathway-2023 to read the full report.