Hello everyone,
As our governments go into recess for the summer, this is the last Campaigning Update of this political year and fittingly it is a review of a very big one indeed.
We kicked off the year after a General Election.
To aid us in recruiting a new group of members, and to make 'our' agenda 'their' agenda, we sent a document celebrating the recent work of the APPGBT to each and every MP with a cover note introducing ourselves.
In August, we produced a campaigning video featuring Peter Realf, that has been used on our Weekly Newsletter and social media, resulting in new campaigners being added to the database and new constituencies with Brain Tumour Research representation.
In September, the inaugural meeting of the All-Party Parliamentary Group on Brain Tumours (APPGBT) for this Parliament was held. Dame Siobhain McDonagh became the new Chair of the group. She will be supported by MPs Sarah Owen and Mims Davies, as well as Lord Polak, who were elected Officers of the group. The membership of the group consists of more than 20 Parliamentarians, and Brain Tumour Research is proud to have maintained our role as provider of the Secretariat.
The three meetings of the newly registered APPGBT in 2024/25 demonstrated that it continues to be an invaluable platform for fostering discussions and identifying tangible ways to improve options for patients.
In November, we, The Brain Tumour Charity and Our Brain Bank, met with Andrew Gwynne MP, Parliamentary Under-Secretary of State for Public Health and Prevention. Also at the meeting were senior representatives from the Policy Teams at DHSC, NICE and the NIHR.
It was an opportunity to remind the Minister that, at the research into brain tumours Westminster Hall debate in 2016, at which we provided the then Shadow Minister Mr Gwynne with information for his response, he had said: "The current level of research into brain tumours is a stain on what in general is one of the UK’s greatest strengths. It is essential that the Government makes research into brain tumours much more of a priority than it is."
We explained that in the intervening eight years there had been little progress.
An open discussion was had with topics under the microscope, including our international position, the need for faster regulatory decisions in our area, earlier diagnosis and symptom awareness – particularly in relation to the forthcoming 10-year Health Plan – and the unique challenges of brain tumours, plus whole genome sequencing and the availability of data for brain tumour patients. Although Mr Gwynne did not remain in office for a long time after the meeting, the officials at DHSC remain, as do our campaigning calls.
In December, Brain Tumour Research organised a roundtable meeting with Scott Arthur MP and charity colleagues. The subject was helping him to shape his Private Members Bill. In May, there was a Backbench Business debate focusing on research and treatment of brain tumours.
We were pleased to provide briefing documents for attending MPs, for the Conservative Party response delivered by Dr Luke Evans, and for newly appointed Health Minister Ashley Dalton who, in her response to the debate, said: "We recognise that more needs to be done to stimulate high-quality, high-impact research into brain tumours… We completely understand the strength of feeling on this issue… That is why we are committed to making a real difference for patients with brain cancer. We will leave no stone unturned until they get the first-class care that they deserve.”
Also in May, alongside our CEO Dan, our campaigner Laura Kurtul, who was also joined by her MP Alberto Costa, as seen in this photo, met with Minister Dalton who also joined the May meeting of the APPGBT. Although not unprecedented for a Minister to attend a meeting of an APPG, it is unusual.
As we review the year, the campaigning team feels that brain tumours have their rightful place on the ministerial agenda and that now needs to deliver in real terms – funding for research, a much-improved take up of trials with more available and new therapeutics quickly available to patients in the UK. We expect to see greater priorities for brain tumours in the National Cancer Plan to be published later this year. We will also be pushing the newly formed NIHR Brain Tumour Research Consortium to ensure full deployment of the £40 million made available in 2018.
Our efforts this year were reinforced by the more than 1,560 supporters who received our weekly campaigning update. We now have an active political supporter in more than 550 (87%) UK constituencies.
Cross-charity, collaborative endeavours this year included communicating updates from the NIHR, pushing forward the case for progressive tissue storage and whole genome sequencing and challenging regulatory bodies to proactively advance progress in our area.
A speaker at the May APPGBT was Scott Arthur MP (pictured alongside Dame Siobhain) who spoke about his Rare Cancers Bill, which we have had real influence in the planning of, and aims to tackle the inequalities rare cancer patients face.
As we enter 2025/26, we stand on the brink of having been a core part of the coalition of charities, politicians, pro-bono lobbyists and civil servants who can claim responsibility for the Rare Cancers Bill becoming the Rare Cancers Act 2025.
In Scotland, we’ve worked to expose how bureaucracy is stalling research into brain tumours. The inaugural meeting of the Cross-Party Group (CPG) on Brain Tumours in the Scottish Parliament, held in October 2024, brought together MSPs, patients, researchers, and campaigners to shape the future of brain tumour care.
In her message to the Group, Convener Beatrice Wishart said: “I spoke recently with a constituent diagnosed with an inoperable brain tumour and told him about the newly formed CPG. He was encouraged to learn about it, and said it gave him hope for the future.” Read more about our inaugural CPG meeting here.
At a recent CPG meeting, three key priorities emerged:
- Equitable access to genomic testing
- Better access to clinical trials
- Elimination of postcode-based disparities in drug access
These reflect a growing consensus that Scotland must modernise its systems.
Momentum was also visible at the Scottish Parliament’s Wear A Hat Day, when politicians, including First Minister John Swinney, wore our signature top hat. Many MSPs spoke about personal experiences of loss, reinforcing brain tumours as both a political and public health priority.
Read more about Scottish politicians rallying behind Brain Tumour Research. The most recent CPG meeting underscored how delays in funding and approvals are slowing innovation.
Our ongoing partnership with the Beatson Cancer Charity through our Scottish Centre of Excellence remains key to positioning Scotland as a global leader in this field. In April, we had the pleasure of welcome the Health Minister Jenni Minto to the centre. The Minister said it was a privilege to meet brain tumour researchers in Scotland, highlighting that collaboration – especially with organisations like Brain Tumour Research and Beatson Cancer Charity – is key to tackling the cancer crisis.
In Wales, our work has focused on tackling inequities in access to treatment and research. This was central to our activity at the Senedd during Brain Tumour Awareness Month in March 2025, where patients and families joined us in calling for fairer care.
A key aspect of our current work is our support for Owain’s Law – a campaign for improved care, access, and outcomes for brain tumour patients. The motion, proposed by Hefin David MS, has gained growing cross-party support.
Senedd Members responded strongly. Peredur Owen Griffiths MS, who lost a close family member to a brain tumour, publicly called for better access to clinical trials. Read more about a Senedd Member calling for greater trials access.
These calls build on previous efforts:
Speeches and personal stories strengthened the case for urgent reform.
Across all devolved nations, our work is rooted in partnership – with universities, health boards, patients, and policymakers.
So, as we look back, we also look forward to:
- The two APPGBT meetings in the diary for 2025
- Monitoring the progress of the NIHR Brain Tumour Consortium
- Ministerial meetings to follow up on the meetings already held
- Responding to the National Cancer Plan
- Delivering against our manifesto commitments
- Expanding the Scottish CPG’s impact
- Exploring deeper political engagement in Wales and Northern Ireland
- Securing devolved research funding
- Running UK-wide awareness campaigns
And we’ll continue championing our research centres and pushing for equal access to trials and diagnostics.
That’s it for this update and for this political year.
We will return on 5th September, but we’d like to thank you all for your support in the past year and send you and your families our wishes for a peaceful summer.
Karen, Hugh and Thomas.
