As the Government develops its new National Cancer Plan, we at Brain Tumour Research have submitted an evidence-led response to the Department of Health and Social Care’s Call for Evidence.
Our submission reflects both the lived experiences of brain tumour patients and the insights of our expert research network. Responding to such consultations gives us the opportunity to amplify the voices of those affected by brain tumours, influence health policy, and press for the systemic changes needed to drive up survival rates. Through our response, we aim to shape a cancer strategy that is ambitious, evidence-based, and truly inclusive for our community.
We focused on improving access to effective treatments and personalised care, and maximising the impact of data, research and innovation. These are areas where we believe urgent action is needed if we are to improve outcomes for brain tumour patients – who remain among the most underserved in the UK cancer system.
The five constant key themes we are advocating for include increasing research funding for brain tumours, building a sustainable research ecosystem, expanding access to clinical trials, ensuring brain tumours are embedded in all national cancer initiatives, and strengthening leadership from Government. Specifically, we are calling for the Government to double funding for research into brain tumours to £20 million during 2025, and increase it to £35 million by 2029. We also urge the creation of dedicated funding streams for early-career researchers, improved access to clinical trials, and better integration of brain tumours in cutting-edge cancer initiatives. Additionally, we seek stronger cross-departmental leadership to prioritise research into brain tumours as part of the broader cancer strategy and ensure long-term progress in treatment development.
Ensuring access to life-extending treatments
Too many brain tumour patients still face limited or delayed access to the most promising therapies and clinical trials. We are calling for a commitment to equity of access, regardless of tumour type, location, or postcode. We support the rollout of basket trials, which match patients to treatments based on the genetic characteristics of their tumour, not just histology. This approach can transform the future for patients with high-grade brain tumours who currently have few options. We also advocate for greater investment in drug repurposing – an area where progress is possible at a lower cost and faster pace. Yet this remains underfunded and poorly supported within current frameworks. Access to new therapies, such as Vorasidenib, must be made more timely and inclusive.
Whole genome sequencing (WGS) is vital for accessing precision treatments and clinical trials. Although WGS is a right for eligible patients within the NHS Genomic Medicine Service, less than 5% of brain tumour patients are accessing it. We support the implementation of recommendations from the 2024 TJBCM Closing the Gap report, which includes NHS funding for brain tumour-specific genomic testing coordinators. We also call for the appointment of Neuro Oncology Precision Pathway Leads (NPPLs) to oversee and improve the logistics of tissue consent, germline sample collection, and timely data return. To begin with, two NPPLs – one in the North and one in the South – should be appointed from the existing NHS workforce, with an estimated cost of around £100K.
Unlocking the power of research, data and innovation
We know that brain tumour patients are still carrying scans between hospitals in envelopes. This is unacceptable in an era where the NHS holds one of the richest health datasets in the world. We’re calling on the Government to prioritise digital transformation by implementing proven interoperability solutions that connect systems across research and care settings.
Clinical trials must become part of routine care. We want to see a system where trials are flagged automatically to patients and clinicians via digital records – regardless of geography. Currently, only 5% of brain tumour patients take part in trials, compared to 28% of breast cancer patients. We’re aiming for 1,000 glioblastoma patients to be enrolled in trials annually by 2030. We also urge reform of NICE and MHRA processes to ensure new treatments and diagnostics are evaluated more quickly, with real-world data and real-time modelling used to support approvals.
Brain tumour patients cannot afford to wait. In our response to the National Cancer Plan, we’ve outlined how better access, data, and innovation can transform outcomes for our community. The Government must be bold and brave in its vision.
Ours is a comprehensive submission to be taken seriously, but we are prepared for some of our evidence not to be directly incorporated into the plan. These points won’t be forgotten. Whatever is excluded when the plan is released will form our ongoing campaigning agenda, because our campaigning continues. Our cause is too important for this not to be the case.
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