This week, we were Patient Experts on a NICE Highly Specialised Technologies Evaluation Committee (HSTEC) meeting. The therapeutic under discussion was Vorasidenib for treating astrocytoma or oligodendroglioma with IDH1 or IDH2 mutations after surgery in people 12 years and over. Vorasidenib has now received regulatory approval from the MHRA, and so this NICE evaluation was the next step to Vorasidenib being, hopefully, reimbursed by the NHS and available to UK patients. Thank you to campaigners who supplied us with their lived experience of the drug, both as a patient or as family member.
Currently, it feels that there is quite a bit happening that could impact UK patients. We have been involved with making the case with NICE for another low-grade glioma drug, this time in the paediatric space, Tovorafenib, and we are working to understand what might be the way forward for UK patients to access Tumour Treating Fields. At the same time, we understand that DCVax is currently being assessed for a market licence approval with a decision due this year.
Progress in new drug and device treatment options can only come through clinical trials and these are the result of research.
It was therefore sobering, if not unexpected, to read this Q+A communication between APPG on Brain Tumours member Charlie Maynard MP and, new in post, Health Minister Dr Zubir Ahmed.
Charles Maynard ©House of Commons/Laurie Noble
Written Question
Asked by: Charlie Maynard
To ask the Secretary of State for Health and Social Care, how much and what proportion of his Department's funding for cancer research has been allocated to (a) brain, (b) liver, (c) lung, (d) oesophageal, (e) pancreatic and (f) stomach cancer research since 2022.
Answered by: Dr Zubir Ahmed
Answered on: 22nd September 2025
The Department invested over £133 million on cancer research for 2023/24, through its research delivery arm, the National Institute for Health and Care Research (NIHR), reflecting cancer’s high priority.
The following table shows NIHR funding programme awards allocated for cancer research between April 2022 and March 2025:
| Cancer type | Total Funding |
| Bladder | £3.0 million |
| Brain, other CNS & Intracranial Tumours | £0.6 million |
| Liver | £2.6 million |
| Lung | £16 million |
| Oesophagus | £9.4 million |
| Pancreas | £0.9 million |
| Stomach | £3.3 million |
Research into brain tumours is looking like it remains in its historical position as the poor relation when it comes to research funding. However, these figures do not align with previous information provided by NIHR, so we are seeking further clarification to better understand the funding landscape.
Despite the progress made, we continue to campaign and thank you to those of you who campaign alongside us.
As Thomas began his final week at Brain Tumour Research, he authored this piece from Bournemouth and the Liberal Democrat party conference.
Brain Tumour Research at the Liberal Democrat Conference: tackling inequalities and unlocking innovation
A recurring theme at Conference was the urgent need to address health inequalities. Across the UK, people in the most deprived areas live on average 18 fewer healthy years compared with those in the most affluent. This disparity is not just a statistic – it represents a postcode lottery in health that leaves too many communities behind.
A recurring theme at Conference was the urgent need to address health inequalities. Across the UK, people in the most deprived areas live on average 18 fewer healthy years compared with those in the most affluent. This disparity is not just a statistic – it represents a postcode lottery in health that leaves too many communities behind.
Professor Arpana Verma, Head of the Division of Population Health, Health Services Research and Primary Care at The University of Manchester, urged politicians to go beyond identifying why inequalities exist and instead work with communities to design solutions. She shared a telling reminder from a member of an underrepresented community: “We’re not hard to reach, we’re easy to ignore.” This underlines the need to listen to local voices to best shape policy.
Andrew George MP, from the Health Select Committee, welcomed the Government’s recent shifts towards prevention and wellbeing but warned about the current trend of drifting away from evidence-based policymaking. To address inequalities effectively, policymakers must have access to the best data and act on it.
Cancer care was central to the debate. Professor Verma highlighted the unacceptable reality that too many patients are still diagnosed in A&E and warned that people with protected characteristics are often overlooked in research and data collection. Without accurate and inclusive data, health policy cannot truly meet the needs of diverse communities. For those affected by brain tumours, these inequalities are particularly stark. Late diagnoses, unequal access to clinical trials, and regional differences in treatment availability mean that outcomes can vary dramatically depending on where patients live.
There was also a fringe event From Lab to Life: Unlocking UK Innovation for Our Health and Wealth. The discussion centred on how the UK can better turn world-class research into real benefits for patients and the economy. For the Liberal Democrats, unlocking innovation means cutting through bureaucracy, supporting small businesses, and ensuring that scientific progress improves lives across the country.
The Government’s new Life Sciences Sector Plan (2025) and investment funds mark a welcome step forward. But as the debate made clear, the UK still struggles to turn discovery into treatments, jobs, and growth. Liberal Democrats argued for smarter regulation, faster adoption of proven innovations, and sustained support for SMEs to strengthen the sector.
Innovation has the power to transform healthcare delivery – bringing care closer to communities, embedding digital tools and AI, and shifting the focus from sickness to prevention. For Liberal Democrats, this is essential to cutting waiting lists, easing pressure on staff, and ensuring a sustainable NHS. Collaboration is key. The Vaccine Taskforce showed what partnerships can achieve, and the same ambition must now drive national missions tackling cancer, dementia, and cardiovascular disease. Yet challenges remain: complex regulation, risk-averse procurement, funding gaps, and workforce shortages. The call was clear – decisive action is needed to break down these barriers so the UK can truly move “from lab to life,” delivering both better care and stronger growth.
Alongside attending conference sessions, I held productive meetings with MPs to discuss the needs of the brain tumour community and support for the wider life sciences sector. With Manuela Merteghella MP, of the Education Select Committee, we explored ways to strengthen research into brain tumours – from tackling clinician-scientist shortages and inspiring future researchers, to aligning EU clinical trials and improving visa routes for research careers.
Alistair Carmichael MP spoke powerfully about the urgent need to get more brain tumour patients onto clinical trials. Having lost a close friend to a brain tumour, this is a deeply personal cause for him. He also praised the tireless work of Beatrice Wishart MSP in the Scottish Parliament, who has consistently championed better outcomes for patients.
It was also a pleasure to meet Daisy Cooper MP, Deputy Leader of the Liberal Democrats, who praised the work of Brain Tumour Research and the impact of the All-Party Parliamentary Group on Brain Tumours (APPGBT) in keeping these issues high on the political agenda.
Collaboration was a strong theme, not only in the fringe discussions but also in the work of charities coming together. Our colleagues at Young Lives vs Cancer continue to highlight the hidden costs of cancer and campaign for practical support. Their calls for a Young Cancer Patient Travel Fund, fairer access to benefits from day one of diagnosis, and recognition of the full cost of cancer, reflect the daily challenges faced by families.
At Brain Tumour Research, we stand shoulder to shoulder with other organisations in demanding change. A brain tumour diagnosis is devastating enough without the added burden of financial hardship or unequal access to care. Together, we must continue to push for investment in research, faster access to treatments, and fairer support for patients and their families.
Conference was a reminder that innovation, collaboration and fairness must go hand in hand. From driving life sciences forward to addressing entrenched health inequalities, the choices made now shape the future of healthcare across the UK. For the brain tumour community, that future depends on political will, investment in research, and a commitment to ending the postcode lottery in care.
Our next stop will be the Labour Party Conference, in Liverpool.
On Tuesday we joined a Medical Research Showcase at the Welsh Parliament, the Senedd.
We were joined by our researchers from a Brain Tumour Research-funded initiative based at Cardiff University. Led by Dr Ben Newland, we have supported his work for nearly three years, and his project demonstrates the innovative work we are helping to drive forward in Wales.
The event was a valuable opportunity to engage with Members (MSs), for us to raise awareness of the challenges facing our brain tumour patients and to showcase the innovative research supported by us.
Returning to Thomas who, as he prepares to leave us, has been reflecting on his last week at Brain Tumour Research and what an incredible three years it has been. He continues:
“I joined wanting to make a difference, having seen cancer affect my own family – my mum sadly died of a secondary brain tumour – and that experience has driven me every step of the way.
“I’m proud to have:
- Worked with inspirational campaigners to share their stories across all four Parliaments – and advocated for policy change on their behalf
- Supported the parliamentary groups on brain tumours to push for progress in research, diagnosis, treatment and care
- Helped turn a conversation at Dame Siobhain McDonagh’s 2024 GBM fringe event into a proposal that could make a real difference – this conversation was with Scott Arthur MP and the proposal became the Rare Cancers Bill which is with the Lords before hopefully returning to the Commons at the end of the year for Royal Assent
- Played an active part in major campaigns, from Brain Tumour Research’s 81,000-signature petition to the 1-in-6 campaign and most recently with One Cancer Voice, urging the Government to ensure its forthcoming National Cancer Plan delivers world-leading action against cancer
- When politicians of the calibre of Daisy Cooper MP praise the Charity, you know it’s a good one. What I’ll miss most are the people, their warmth, passion and relentless commitment to improving outcomes
“I look forward to seeing what the Charity achieves next, and I know my successor Katherine Dew along with Jana Abdal-Rahman will continue building on this important work.”
As Thomas moves to pastures new, we are really pleased to introduce Katherine Dew to our team.
We asked her to explain a little about herself:
“I am a commercially-focused manager within public affairs, policy and communications, with 13 years’ experience of Parliament, industry, and regulated sectors, (including life sciences). I'm delighted and proud to have joined such an incredible charity with many passionate volunteers and supporters.
"I see my role as:
- Communicating Brain Tumour Research's strategic priorities to policymakers across the UK, including engaging with Westminster and devolved governments, charity stakeholders, and wider life sciences sector to maximise the visibility, reputation, and impact of our research
- Delivering an ambitious policy and public affairs engagement strategy to support our community's scientific goals, expand our identity, and showcase our successes across the devolved nations, whilst working in partnership with our funders and Centres of Excellence”
Next week there will be updates from Liverpool and York where our annual researcher workshop takes place.
Wishing you all a peaceful time until then.
Karen, Hugh, Katherine and Jana
