Our 2020 petition called for increased national investment into brain tumour research to £35 million a year and closed at the end of February 2021.
Following the amazing support of more than 112,000 signatories, we produced our Level Up and Stop the Devastation Petition Report which called on the Government to:
- Introduce a new levelling up brain tumour research fund of £105 million
- Increase the national investment into brain tumour research to £35 million a year
- Demonstrate joined-up thinking for investment across the brain tumour research pipeline
In March 2021 at Prime Minister’s Questions (PMQs), Derek Thomas MP, Chair of the All-Party Parliamentary Group on Brain Tumours (APPGBT) asked the Prime Minister (Boris Johnson) if he would meet with him and receive the report.
This meeting took place in July 2021
The Inquiry led to the landmark inquiry report, Pathway to a Cure – Breaking Down the Barriers, sponsored and produced by Brain Tumour Research which was launched at the House of Commons on 28th February 2023.
Key recommendations included:
- The Government should recognise brain tumour research as a critical priority, developing a strategic plan for adequately resourcing and funding discovery, translational and clinical research by 2024, ring-fencing £110 million of current and new funding to kick-start this initiative
- Cell line isolation and biobanking is happening but only at a minority of sites across the research community. Government must ensure a robust tissue collection and storage infrastructure is in place across the country
- Government must do more to build research capacity encouraging and retaining talent through fellowships and research incentives
- There are a limited number of clinical trials available for brain tumour patients and the national trials database is not reliable. Government should ensure equity of access to clinical trials and that the clinical trial database is robust and up to date
- Pharmaceutical companies are choosing not to pursue the development of brain cancer drugs in the UK. Government should simplify the regulatory process and introduce tax reliefs and incentives for investors, to encourage investment for the longer time periods necessary to develop and deliver new brain tumour drugs
- Funding bodies should ring-fence specific funding for research into childhood brain tumours where survival rates for the most aggressive tumours have remained unchanged for decades leading to frustrated families seeking costly and unproven treatment abroad
A backbench business debate was held in the House of Commons on 9th March 2023 at which the responding Health Minister Will Quince said: “The report makes a number of recommendations for actions by research funding agencies, such as the Medical Research Council (MRC) and National Institute for Health and Care Research (NIHR), on co-ordinating action and making funding available. Crucially, the report is clear that to make advances in brain tumour research we must bring together diverse disciplines. There are detailed recommendations here, with potentially far-reaching consequences, and the MRC, NIHR and I will consider responses and come back to colleagues“.
Mr Quince ended on an optimistic note saying:
“To be clear, the £40 million announcement was a signal to the research community that we are serious about funding research in this space. It is not a ceiling. If we can spend more on the best quality science, let me assure the House that we will do so. I understand and share the frustrations that only a proportion of the £40 million on brain tumour research has been allocated so far, but this funding will remain available. I genuinely believe that the funding for brain tumour research is promising, and we look forward to considering the all-party group recommendations with colleagues across Government. I am confident that the Government’s continued commitment to funding will help us make progress towards effective treatment.”
At PMQs on 15th March 2023, brain tumour champion and chair of the APPGBT Derek Thomas MP asked the Prime Minister Rishi Sunak to make brain tumours a critical priority because “a unique complex disease needs a unique response”.
Mentioning that it was Brain Tumour Awareness Month, Derek said that “the brain tumour community has not seen the breakthroughs in treatment and survival rates that many of us believe they should have”.
The PM thanked Derek for his “thoughtful and powerful question” continuing that “I'll make sure that he (Derek) gets a meeting with a relevant minister, so we can assure that that funding gets out the people who need it, and we can bring relief to them as quickly as we can”.
Meetings with Ministers are ongoing.
Background to 2020/21 Petition
The biggest cancer killer of children and adults under the age of 40
Brain tumours still kill more children and adults under the age of 40 than any other cancer, yet despite promises of increased investment in research from the Government and larger cancer charities we are still not seeing parity of funding with other cancers such as breast, prostate and leukaemia.
More children and adults under the age of 40 die of a brain tumour than any other cancer
Five-year survival for breast and prostate is over 70%, leukaemia over 40% yet for brain tumours it is just 12%
Since national cancer spend records began in 2002 by 2019 £680 million had been invested in breast cancer, yet only £96 million in brain tumours – that’s a difference of £35 million a year over 17 years
More funding for research into brain tumours is urgently needed.
The Realf family’s 2015 e-petition gained over 120,000 signatures with our support. This led to the Petition Committee’s first ever report and the April 2016 Westminster Hall debate attended by over 70 MPs. This led to the establishment of a Task and Finish Working Group which formed later that year.
The House of Commons Petitions Committee declared that ‘successive Governments have failed brain tumour patients and their families for decades’. Their March 2016 report ‘Funding for research into brain tumours’ quoted the most recently reported investment in brain tumour research (2014) as 1.5% (£7.7 million) of the £498 million national spend on research into cancer.
Things have improved since then and spend has doubled meaning that in 2018 it was £15 million but this isn’t the £35 million and the parity of funding with other cancer sites such as breast and leukaemia, we were asking for then, and continue to ask for.
Two years later, in 2018, when the report of the Department of Health and Social Care (DHSC) task and finish working group on brain tumour research was published and Dame Tessa Jowell sadly died from her brain tumour, the Government committed to £40 million, with Cancer Research UK ( CRUK), committing a further £25 million over five years.
Another two years down the line we learn that only £6 million of the promised Government money has been spent and the pandemic has seen CRUK warning of a £150 million downturn in their research spending. Where does this leave brain tumour research?
Research into brain tumours must not be left behind – The nation needs to invest at least £35 million a year if we are to find a cure for brain tumours in the next 20 years.
- We want to find a cure for all types of brain tumours
- We want to see parity with other cancers and a national spend on brain tumour research of £35 million a year
- We need your help to add 100,000 signatures to our petition by the end of February 2021
- We need your help to campaign with us and engage your local MP (with our support)
- We want to deliver this petition and your stories to the Prime Minister during March Brain Tumour Awareness Month 2021