Driving change for brain tumour patients: this week’s highlights
This week has been pivotal for our campaign, with developments in Parliament, Government commitments and progress in Scotland.
House of Lords:
On Monday, Baroness Mattinson asked what steps the Government is taking to scale up research into brain tumours. Health Minister Baroness Merron responded during a 10-minute debate – read it here. We’ve already responded to her comments, and one of our strongest advocates in the House of Lords has requested a meeting with her, which we’ll attend.
Number 10:
The Prime Minister, Keir Starmer, has written to Dame Siobhain McDonagh – Chair of the APPG on Brain Tumours, reaffirming the Government’s commitment to increase funding. We have provided the secretariat for the APPG since its inception in 2005 and have worked closely with Dame Siobhain since the formation of the new Government in 2024. The letter specifically mentions the £40 million funding allocation made in 2018, with the PM writing that “while I share your frustration at the pace this funding has been rolled out so far, the NIHR is confident that the forward trajectory is looking strong.”
A funding announcement from the NIHR Brain Tumour Research Consortium is expected before the year-end. The PM continues in his letter to Dame Siobhain that when it comes to funding “our ambition is that these investments will shift the dial on improving outcomes for brain tumour patients.”
Holyrood:
On Tuesday, the Cross Party Group (CPG) for Brain Tumours convened with our community in Scotland, MSPs, and other policy stakeholders. It was a really positive evening, and we were grateful for the support of the Tessa Jowell Brain Cancer Mission and to Neurochase. Our Patron Theo Burrell joined the meeting and, as always, spoke with passion and eloquence.
What is really important is that now we look forward to the Scottish Elections in May 2026, and how Brain Tumour Research can continue to engage, lobby, and encourage the Scottish Parliament, notably the Secretary of Health, that Scotland not only rolls out genomic testing, but also commits to hearing more lived experience in this field.
It is absolutely devastating that patients, such as our patron Theo, have to pay with their own money to travel abroad for treatment. Health outcomes should not be dictated by post code or financial circumstances. We’ll keep the pressure on Cabinet Secretary Neil Gray to invest in whole genome sequencing, which will save money and lives in the future.
Drug access:
As we await NICE’s decision on NHS reimbursement for the low-grade glioma drug Vorasidenib, we have been asked to feed into a similar assessment for the Scottish Medicines Consortium (SMC). The lack of access to Vorasidenib has been a matter of concern to the CPG. As with the NICE appraisal we are only too glad to have the opportunity to share patient voices with the SMC.
Health Data Innovation:
Baroness Nicola Blackwood has been appointed Chair of the Health Data Research Service, backed by up to £600 million in funding from the government and Wellcome to accelerate access to NHS data and speed up new treatments.
Baroness Blackwood is a recognised leader in life sciences and innovation. She is Chair of Oxford University Innovation and Genomics England and also serves on the boards of biotechnology company BioNTech and investment fund RTW Biotech Opportunities. While BioNTech (one of the companies partnering with the NHS on trials for cancer vaccines) currently excludes brain tumours from these trials, we continue to push for inclusion in all innovative research.
Whether the innovation in cancer detection is from BioNTech, Grail or Xgenera we will always advocate for it to benefit brain tumour patients.
We’ll be back next Friday with more updates,
Karen, Hugh, Katherine and Jana.
