In Committee Room 9 of the House of Commons on Tuesday evening, the All-Party Parliamentary Group on Brain Tumours (APPGBT) held its Annual General meeting (AGM). We are very pleased to confirm that our Chair for the forthcoming year will be Dame Siobhain McDonagh, ably supported by MPs Sarah Owen and Mims Davies, alongside Lord Polak, as the group’s officers.
Brain Tumour Research is once again proud to have been confirmed as the group’s secretariat provider.
It was gratifying that the level of interest in brain tumours meant that our AGM easily reached the number of attending Parliamentarians needed to make sure the procedural business was passed. This was due in no small measure to all those of you who wrote to your MPs over the past week requesting their attendance – thank you from all the campaigning team at Brain Tumour Research.
The Parliamentarians in attendance on Tuesday were:
- Charlie Maynard
- Sarah Owen
- Lord Polak
- Mims Davies
- Peter Swallow
- Scott Arthur
- Peter Prinsley
- Susan Murray
- Freddie van Mierlo
- Clive Jones
- Jim Dickinson
- Sir Nic Dakin
- Baroness Cotes
- Chris Evans
- Jonathan Hinder
Following the formal proceedings, a packed room then listened intently as a range of speakers spoke with passion, knowledge and ambition. The meeting focused on the critical issue of improving tumour tissue collection and storage after neurosurgery – an essential step in advancing research and treatment.
It was also an opportunity for the campaigning group Brain Cancer Justice to introduce themselves.
The meetings briefing document and the slides from the keynote presentation can be found here. The meeting minutes will be uploaded to the same page shortly and we will be reporting back to APPG members and to you, our community, on actions falling out of the meeting and how we are addressing them.
We now look forward to the next meeting of the group on 21ˢᵗ October.
On 11ᵗʰ April, Brain Tumour Research, working alongside The Brain Tumour Charity and the National Institute for Health and Care Research (NIHR), provided an update for our community: “Consortium to build sustainable pipeline of trials for new brain tumour therapies.” After five months of campaigning endeavour, we felt now it’s time for the second such update, again produced in collaboration, and again intended for all brain tumour stakeholders.
Following widespread campaigning activity across the charitable brain tumour sector, including recent meetings and subsequent communications with Health Minister Ashley Dalton MP, some progress has been made on issues of concern to all of us. Many of these issues were raised at the May 2025 meeting of the APPGBT and what follows is an update written by us but based on information from the Department of Health and Social Care (DHSC). All quotes are sourced from letters received from Minister Dalton.
The first point is that “the Government is investing in new life-saving and life-improving research to support those diagnosed and living with brain tumours”.
Allied to this, the Government recognises the significant impact of rare cancers on patients, and on their families and carers, and fully supports Scott Arthur MP’s Private Members’ Bill on rare cancers. The Bill will facilitate clinical trials in England by ensuring researchers can easily connect eligible patients.
The NIHR has been working closely with the new National Brain Tumour Research Consortium to ensure their recently submitted funding application is robust, ambitious and flexible, enabling the immediate launch of trials that are ready to begin following the award, promoting the development of new studies, and supporting the expansion of existing research throughout the lifetime of the Consortium.
As we updated on 11ᵗʰ April 2025, it is hoped that £20 - £25 million of the £40 million, originally committed by the Government to brain cancer research in 2018, could be accessed as the Brain Tumour Consortium aims to drive a step change in brain cancer research, ensuring the most promising late stage clinical trial opportunities are made available to adult and child patients.
Following the completed application submission, peer review and NIHR funding committee assessment will begin immediately. Time has been set aside to ensure the funding committee can convene and make a timely decision, and this is expected in early November 2025.
NIHR and Government are keen to emphasise that the Consortium isn't the only way in which brain tumour research can be funded and that applications to existing, open funding programmes remain. Early engagement with NIHR's Research Support Services is encouraged to ensure the most appropriate funding stream can be found prior to submitting an application.
“Brain cancer research will continue to be a priority, and the NIHR is committed to furthering investment in and support for high-quality brain tumour research.”
The NIHR continues to encourage and welcome more funding applications for such research.
In addition to funding research investment in research infrastructure, such as biomedical research centres, it is delivering important clinical research, including trials.
Alberto Costa MP, Louise Fox, Health Minister Ashley Dalton, Laura Kurtul, Jess Mills and Dan Knowles CEO
Addressing specific points raised at the May 2025 APPG meeting
The DHSC is committed to ensuring that NIHR funding panels include the right expertise. The NIHR explicitly seeks independent peer review with relevant experience in brain tumour research, and related aspects such as running clinical trials, for applications that are considered by the full committee. The NIHR is working with the community to encourage subject matter experts to apply to become committee members, so that it has the full range of expertise within its committees. The NIHR is keen to highlight its participation portal for expert members of funding review committees and encourages sign-up from experts in brain tumours.
The NIHR provides feedback at multiple stages of the application process, and it is exploring how to improve this. NIHR funding is highly competitive and the success rate for brain tumour research funding applications is broadly in line with that of other research areas, but it is keen to support more high-quality applications in this field. The NIHR has committed to reviewing how it provides feedback and to inform this work will seek input from applicants to better understand their experiences.
Information on NIHR-funded projects and funding opportunities is publicly available via the NIHR’s Funding and Awards and Open Data platforms.
Information for patients on all brain tumour projects that are supported for research delivery by the NIHR can be found on the portal for patient access, Be Part of Research. This platform allows individuals across the UK who are interested in taking part in research to find studies that are relevant to them and sign up. The NIHR has recently launched a Be Part of Research campaign to boost public awareness and involvement, especially from underrepresented groups. The ultimate objective is for Be Part of Research to provide a single, comprehensive list of actively recruiting research, regardless of who is funding it.
As part of the 10-Year Health Plan, the Government announced an unprecedented boost for clinical trials. This includes further development plans for the technical infrastructure of the Be Part of Research service, which will ensure scalability and long-term reliability and enable closer integration with other NHS systems and digital services. Additionally, a range of new features will be implemented, including an enhanced study search function that will provide more accurate, accessible and up-to-date study information and a ‘pre-screener’ that will help match volunteers to relevant research studies.
At Brain Tumour Research we await the release of the National Cancer Plan, we are excited by the progress of Scott Arthur’s Rare Cancers Bill, which we are heavily invested in, and we look forward to our next promised meetings with Minister Dalton.
Our CEO Dan Knowles commented: “Much has happened and I am proud of the collaborative nature of what we have done and the impact and influence it has had. This update shows the intent of the Government, and we must have no doubt of their sincerity that, as the minister has said, brain tumours are a priority for them – that itself is a notable campaigning achievement.
“We will keenly watch progress at the Consortium, and the real test will come when numbers become involved and we can judge investment up to and beyond the £40 million promised in 2018.
“We stand ready to move to the next level now with more prescriptive asks because, with the Government ready to work with us, it is up to us as a brain tumour charity and as advocates for the UK brain tumour community, to detail out what change actually looks like on the pathway to a cure.”
To conclude this September update, we feel that the content is illustrative of a spirit to work collaboratively as a sector and to work alongside government and relevant funding bodies to drive real change.
This is working. Progress is being made.
However we all want change to happen quicker and to a greater extent, we have been waiting for too long.
It is that spirit that is driving us forward and it is that spirit that will frame our next update.
Last week’s meeting of the Cross-Party Group on Brain Tumours in the Scottish Parliament was both powerful and emotional and was expertly chaired by Co-Convenor Finlay Carson MSP. The session once again highlighted the urgent need for fairer, faster access to research, innovation and treatment for those affected by brain tumours.
A highlight of the meeting was an address from Dr Scott Arthur MP, sponsor of the Rare Cancers Bill. Dr Arthur movingly shared the story of his father-in-law, Ivor, who died from glioblastoma in 2017.
He explained how the Bill seeks to address inequalities by boosting research into rare cancers, expanding access to clinical trials, and reviewing drug regulations. Of particular significance to the brain tumour community is the Bill’s focus on ensuring fair access to innovative treatments such as Tumour Treating Fields (TTFields). Already used by more than 35,000 patients worldwide and available in countries including the US, Germany, and Spain, TTFields remain unavailable on the NHS in the UK.
Importantly, Dr Arthur has been consulting with health teams in Scotland, Wales and Northern Ireland throughout the process, ensuring the Bill reflects the needs of patients across the UK. For patients in Scotland, the Bill could be especially transformative.
The Group also heard from Dr Sarah Kingdon of the Tessa Jowell Brain Cancer Mission, who highlighted Scotland’s research strengths while warning of the difficulties patients face in accessing clinical trials across different regions. Chengetayi Pswarayi of Novocure provided industry insight into the barriers preventing new technologies like TTFields from reaching Scottish patients. Kevin Donaghy closed the session with moving reflections from his book Stories of Cancer and Hope, sharing the journey of a glioblastoma patient, diagnosed at just 18.
The meeting underscored both the challenges and opportunities ahead. Scotland has world-class expertise in neuro-oncology and a determined community of patients, researchers, and campaigners. But without urgent political action to break down systemic barriers, too many families will continue to face limited options and unequal access.
In other news a coalition of charities met this week to discuss the fall out from the activity around NICE and TTFields. Following the incredible outreach from you, we have had further communication with NICE Chief Medical Officer, Professor Benger, and we wanted to share this with other stakeholders.
We are now drafting another update for our community (like the one above) this time addressing our response to Professor Benger, our next steps and what we might expect from other stakeholders. Our aims are the same: new treatments delivered faster to UK brain tumour patients. The route to those aims can vary and industry and Government may present some barriers but we believe that the charitable sector provides a key role in this and that nothing is insurmountable.
That update will be with you next week, alongside some exciting news about our team.
Just time to mention that in recent days we have also been at meetings of the UK Cancer Research Strategy Forum and the Low-Grade Glioma Working Group – summer holidays seem a distant memory!
Wishing you all a peaceful time until next Friday.
Karen, Hugh and Thomas
Published on Friday 12ᵗʰ September 2025.
