The UK Government has committed to transforming outcomes for brain tumour patients and we are proud of the role we have played in shaping these initiatives. But what has been announced and how will it improve survival rates for the biggest cancer killer of children and adults under 40?
What has Government announced?
The UK Government has committed to:
- An immediate expert review by leading brain cancer experts, chaired by Professor Anthony Chalmers, co-Director of our Scottish Centre of Excellence
- A National Action Plan shaped by the reviews findings to get new treatments out of the laboratory and to patients faster
- A new National Brain Cancer and Brain Tumour clinical lead to drive this work forward, appointed by the Department of Health and Social Care (DHSC)
- An acceleration of the orphan drugs regulations review (a commitment in the Rare Cancers Act) to be completed in two years rather than three – any changes to these regulations could help patients access promising new treatments sooner
Ahead of the announcement, Brain Tumour Research worked alongside The Brain Tumour Charity, brainstrust and Brain Tumour Support to submit proposals to the DHSC about what initiatives could make a tangible difference for patients. This included calling for an expert review that would examine obstacles to the delivery of the Government’s ambition of increasing the survival rate for those diagnosed with brain tumours, so we are pleased that this recommendation has been taken forward and that we will play a role in the review.
Why is the expert review important?
The expert review is one of the key recommendations that we, along with the other major brain tumour charities, proposed to the DHSC and Number 10 ahead of Archie Goodburn’s meeting with the Prime Minister.
In 2018, the work of the All-Party Parliamentary Group on Brain Tumours and Brain Cancer, for which we hold the secretariat, triggered a Task and Finish Working Group and a resulting landmark government review into the barriers facing research into brain tumours. Unfortunately, very few recommendations in this report were grasped by the Government at the time.
Over the next three months, Prof Anthony Chalmers is convening experts across the brain tumour community to look at recommendations from the 2018 review, to assess what has changed for patients since and what is still holding progress back.
Having played a leading role in the 2018 Task and Finish Working Group, we welcome the opportunity to revisit this and ensure an action plan for progress.
What will come next?
The review will shape a National Action Plan to get new treatments out of the laboratory and into clinical trials and patients. We will take part in roundtable discussions with Government to ensure that the issues facing patients and the research community are considered. Along with partners across the brain tumour charities, we have been clear that Government cannot work in silos to tackle this devastating disease and we need to ensure close working between DHSC and the department that funds discovery research across the UK – Department for Business, Innovation, Science and Trade (DBIST).
We will need to see the action plan contain specific commitments by ministers that ultimately lead to tangible improvements in people’s lives.
Who will coordinate the action plan?
The Government will appoint a National Brain Cancer and Brain Tumour Clinical Lead who will drive the work of the action plan forward.
We hope this role complements the existing positions 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.
What is the Orphan Drugs Regulation Review?
The Orphan Drugs Regulation Review is a part of the Rare Cancers Act and is a legal commitment for Medicines and Healthcare products Regulatory Agency (MHRA) to review the processes involved in the regulation of medicines for rare cancers such as brain tumours. Current pathways are too long for drugs aimed at people with a terminal diagnosis. While this review was confirmed earlier in 2026, we had concerns that the timelines were too long and are pleased that the Government has accelerated work on this. As part of our work on the Rare Cancers Act implementation group, we will continue our work to ensure this review delivers for patients.
How will this improve survival rates for patients?
Ultimately, improved survival rates are reliant on new treatments, so these commitments from Government will not change outcomes for existing patients immediately. However, ministers have now shown an urgency in addressing the challenge of low survival rates for brain tumours and we remain committed to ensuring that Government lives up to its promises.
What else do you think Government needs to do?
We are delighted Government has seized the opportunity to place research at the heart of transforming outcomes for brain tumour patients. We are optimistic that this renewed focus will help ensure discoveries in the laboratory actually make it to patients who so desperately need more options.
While the announcements are welcome, we can’t improve survival rates for patients without investment in research. Nearly three quarters (74%) of research funding into brain tumours comes from the charity sector, compared to just 26% from Government. That’s why we are calling for an increase in the national investment in research into brain tumours to at least £45 million a year by 2029, in order to close the gap with funding levels seen for other cancer types such as leukaemia, where sustained investment over recent decades has made a huge impact on survival rates.
Will these announcements improve outcomes for those with non-cancerous brain tumours?
Although the Government's 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 is important. Low-grade and non-cancerous brain tumours can still have devastating and life-changing consequences. Depending on their location and type, they can cause seizures, neurological difficulties and permanent disabilities. Some can also progress into more aggressive forms of the disease.
Brain Tumour Research has consistently called for Government policy and research investment to recognise the needs of people affected by all types of brain tumours. We raised this directly with Government ahead of the announcement and will continue our work towards a cure for all types of brain tumours.
Will this impact patients in Scotland, Wales and Northern Ireland?
The Government's announcements are an important step forward for the whole brain tumour community, including patients and families in Scotland, Wales and Northern Ireland.
The expert review will examine the barriers holding back progress in brain tumour research across the four nations, with findings that have the potential to benefit patients across the UK. Increased investment in research, faster development of new treatments and improvements to medicines regulation could all have a positive impact beyond England.
However, healthcare is devolved, meaning that decisions about NHS services and access to treatments are made separately in Scotland, Wales and Northern Ireland. It will therefore be important that the UK Government works closely with the devolved administrations to ensure that patients throughout the country can benefit from the progress being made.
Brain Tumour Research is already working with parliamentarians, researchers and patients across all four nations to address inequalities in access to clinical trials, genomic testing and treatments.
We will continue to engage with the Scottish Government, Welsh Government and Northern Ireland Executive, alongside the UK Government, to ensure that the experiences and needs of patients in every nation are reflected in the review and subsequent action plan.
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