What Needs to Change: Our campaigning priorities across the UK  

Only 13% of people with brain cancer will survive five years after their diagnosis, compared to 57% for all cancers. 
This needs to change. That’s why we are campaigning for an increase in funding for research into brain tumours to develop new treatments and increased access to clinical trials to improve options and outcomes for patients. 

As well as pushing the Government to deliver on its commitments in the National Cancer Plan and swiftly implement the Rare Cancers Act, we have the following campaigning priorities. 

Priority one: Increase investment in research into brain tumours to at least £45 million a year 

Investment in research has underpinned new treatment options, improved survival rates and hope for patients in other disease areas. Now it is time to change the story for patients with brain tumours.  

Investment in research into brain tumours by charities and government across the UK has increased in recent years, reaching more than £26 million in 2023/24, compared with around £18.5 million in 2019/20. However, it still lags behind other comparable cancer types such as leukaemia. In 2023/24, the national investment in research into leukemia research was one and a half times higher than the investment in brain tumours at £40 million [1].

Critically, just 26% of spend on research into brain tumours came from Government in 2023/2024, compared to 74% from charities. That’s why we need to see a sustained increase in funding every year, from both Government and the charity sector.   

Pictured: Policy and Public Affairs Manager, Sam Bromiley and Secretary of State for Health and Social Care, Yvette Cooper.

We are calling on Government to: 

• Support increased research spend on brain tumours of at least £45 million a year by 2029, compared to £26.2 million spent in 2023-2024[1]

• Establish a cross-departmental task force between the Department of Health and Social Care (DHSC) and the Department of Business, Innovation, Science and Trade (DBIST) to develop and implement recommendations for where investment is best directed to improve treatments and ultimately increase survival rates for brain tumour patients 

• Create a named fund aimed at the life sciences sector, focused on getting treatment approaches out of the lab and into clinical trials – a notoriously challenging stage in the drug development process 

Priority two: Grow a strong UK research ecosystem that turns innovation into better outcomes for patients

Breakthroughs in the laboratory will only change the story for the brain tumour community once they are turned into treatments in clinics across the UK. This process requires sustained funding. Not just in technologies and laboratory infrastructure, but in the research workforce, enabling brain tumour researchers to remain in the field and build momentum around promising ideas. 

We are calling on Government to: 

• Create funding streams to attract, support and retain early-career brain tumour researchers, attracting valuable expertise to this complex and devastating disease  

• Create a dedicated scheme for clinicians to ‘buy out’ time from medical practice to conduct research, expanding valuable expertise   

• Create a joint approach for funding between DHSC and DBIST  

Priority three: Increase the number of brain tumour clinical trials and the number of patients accessing them   

Clinical trial recruitment for brain tumours is the lowest of any cancer. An estimated 2% of brain tumour patients are on a clinical trial.  

To increase the number of available clinical trials, we need to see greater investment from the life science industry in this country.   

Through our work engaging with the pharmaceutical industry and life-sciences sector, we know that a lack of incentives such as tax breaks and challenging regulatory frameworks are barriers to this investment.   

 We are working with partners to implement the Rare Cancers Act and the National Cancer Plan – which include a commitment to a central trial registry to facilitate trial recruitment.   

  •  Whole Genome Sequencing  

    Whole genome sequencing (WGS) of brain tumour tissue reveals powerful information about what is driving tumour growth and what drugs could be used to target it.   

    This information unlocks access to clinical trials based on cancer biology rather than location in the body. Without it, the pool of trials that patients can be part of shrinks. A lack of WGS also means that pathways to future personalised treatments are closed off. 

    Inequalities in how WGS is offered around the country means that patients with brain tumours are potentially being denied access to innovative treatments.  

  •  Fresh frozen tissue   

    Many new treatments in development rely on harnessing detailed genetic information about the tumour. If tumour tissue isn’t frozen when it is removed during surgery then this powerful information is lost, closing down pathways to clinical trials and innovative treatments.

We are calling on Government to:  

• Engage with industry to build a more attractive financial and regulatory environment that encourages pharmaceutical companies to invest in brain tumour drug development in the UK   

• Commit to 100% access to WGS by 2030 across the UK 

• Ensure that fresh-frozen tissue storage is available in all possible instances across the UK.  

• Ensure brain tumours are considered and included in NHS innovations and initiatives being rolled out 

Campaign with us 

Pressure from people affected by brain tumours has been a major factor in encouraging ministers to make the policy commitments that they have. Your voice has the power to influence and bring about positive change.  

We would like you to campaign with us to hold ministers in London, Edinburgh, Belfast and Cardiff to account to deliver life- changing research. You can make the difference by asking your local member of parliament to champion the policies that can bring about the next generation of treatments for brain tumours. We can give you training and support to guide you.  

If you want to take part in our campaigning please register your interest with campaigning@braintumourresearch.org

We work across the UK to campain for change. Learn more aboutour work in Scotland and Wales.

Learn about our work in ScotlandLearn about our work in Wales

References:  

[1] Data taken from analysis by Brain Tumour Research on investment in brain tumours and leukaemia from 2019-2024.