The UK Government has set out a series of commitments intended to transform outcomes for brain tumour patients, and accountability for delivering them now rests with named institutions, appointed office-holders and a legally mandated regulator. The announcements include an immediate expert review chaired by Professor Anthony Chalmers, co-Director of Brain Tumour Research’s Scottish Centre of Excellence; a National Action Plan shaped by that review’s findings; a new National Brain Cancer and Brain Tumour clinical lead appointed by the Department of Health and Social Care (DHSC); and an acceleration of the orphan drugs regulations review, a commitment under the Rare Cancers Act, to be completed in two years rather than three. Changes to those regulations could help patients access promising new treatments sooner.
The institutional groundwork was laid before the announcement. Brain Tumour Research worked alongside The Brain Tumour Charity, brainstrust and Brain Tumour Support to submit proposals to the DHSC about which initiatives could make a tangible difference for patients. Among these was a call for an expert review examining obstacles to the delivery of the Government’s ambition of increasing survival rates for brain tumours. The charity is pleased that this recommendation has been taken forward and that it will play a role in the review.
The expert review is one of the key recommendations the charities proposed to the DHSC and Number 10 ahead of Archie Goodburn’s meeting with the Prime Minister. Its significance is best understood against earlier experience. In 2018, the work of the All-Party Parliamentary Group on Brain Tumours and Brain Cancer, for which Brain Tumour Research holds the secretariat, triggered a Task and Finish Working Group and a landmark government review into the barriers facing brain tumour research. Very few recommendations in that report were grasped by the Government at the time, a failure of follow-through that shapes expectations of the current process.
Over the next three months, Prof Anthony Chalmers is convening experts across the brain tumour community to examine the recommendations from the 2018 review, assess what has changed for patients since, and identify what still holds progress back. Having played a leading role in the 2018 Task and Finish Working Group, the charity welcomes the opportunity to revisit this work and ensure an action plan for progress.
The review will shape a National Action Plan designed to move new treatments out of the laboratory and into clinical trials and patients. Brain Tumour Research will take part in roundtable discussions with Government to ensure the issues facing patients and the research community are considered. Together with partner charities, it has been clear that Government cannot work in silos to tackle this devastating disease, and that close working is needed between the DHSC and the Department for Business, Innovation, Science and Trade (DBIST), which funds discovery research across the UK. The charity says the action plan will need to contain specific commitments by ministers that ultimately lead to tangible improvements in people’s lives.
Coordination of that plan will fall to a National Brain Cancer and Brain Tumour Clinical Lead, to be appointed by the Government. It is hoped this role complements positions already appointed this year: Dr Sara Stoneham, Rare Cancers Research Lead, a key element of the Rare Cancers Act, and Dr Robert Metcalf, Rare Cancers Clinical Lead, part of the National Cancer Plan.
The Orphan Drugs Regulation Review forms part of the Rare Cancers Act and is a legal commitment for the Medicines and Healthcare products Regulatory Agency (MHRA) to review the processes involved in regulating medicines for rare cancers such as brain tumours. Current pathways are too long for drugs aimed at people with a terminal diagnosis. Although the review was confirmed earlier in 2026, the charities had concerns that the timelines were too long, and the acceleration of the work has been welcomed. Through its seat on the Rare Cancers Act implementation group, Brain Tumour Research will continue working to ensure the review delivers for patients.
The question of what these commitments mean in practice is examined in detail by the charity at https://braintumourresearch.org/blogs/latest-news/what-do-the-government-announcements-on-brain-tumours-mean-for-patients, which sets out what has been announced and how the measures are expected to affect survival rates for the biggest cancer killer of children and adults under 40.
On outcomes, the charity is candid: improved survival rates depend on new treatments, so the commitments will not change outcomes for existing patients immediately. But ministers have shown urgency in addressing low survival rates, and the charity remains committed to ensuring Government lives up to its promises.
Two further accountability questions stand out. The first is scope. Although the announcement refers primarily to brain cancer, ministers have since confirmed that the expert review will cover all brain tumours, not just those classified as cancerous, and will include both adult and paediatric tumours. This distinction matters because low-grade and non-cancerous tumours can cause seizures, neurological difficulties and permanent disabilities, and some can progress into more aggressive forms. The charity raised this directly with Government ahead of the announcement.
The second is devolution. Healthcare is devolved, so decisions about NHS services and access to treatments are made separately in Scotland, Wales and Northern Ireland. The expert review will examine barriers across the four nations, and the UK Government will need to work closely with the devolved administrations to ensure patients throughout the country benefit. Brain Tumour Research is already working with parliamentarians, researchers and patients across all four nations on inequalities in access to clinical trials, genomic testing and treatments, and will continue to engage with the Scottish Government, Welsh Government and Northern Ireland Executive.
Underlying all of this is the funding question. Nearly three quarters (74%) of research funding into brain tumours comes from the charity sector, compared to just 26% from Government. The charity is calling for national investment in brain tumour research to rise to at least £45 million a year by 2029, to close the gap with funding levels seen for other cancer types such as leukaemia, where sustained investment over recent decades has had a huge impact on survival rates. Whether ministers match the urgency they have shown with structural commitments will be the measure of these announcements.