Hello everyone,
This week we were at Westminster planning the next meeting of the APPG on Brain Tumours with our Chair, Dame Siobhain McDonagh.
We will meet on Tuesday 13ᵗʰ May at 18:00 in the Macmillan Suite of Portcullis House and we will be joined by Health Minister Ashley Dalton.
Clearly, we want as many MPs as possible to join us, so please could you all drop this note to your MP over the weekend, and please CC me:
Subject: APPG on Brain Tumours 13th May 18:00 Macmillan Suite
Dear [Your MP],
The APPG on Brain Tumours will meet on Tuesday 13ᵗʰ May at 18:00 in the Macmillan Suite of Portcullis House.
The group will welcome Health Minister Ashley Dalton.
I have CC’d Hugh Adams from the charity Brain Tumour Research – the group’s secretariat provider.
Hugh will provide you with a briefing document ahead of the meeting.
I very much hope that you will be able to be there on the 13ᵗʰ– this is a cause of great importance to me and your support would be hugely appreciated.
Kind Regards,
[Your Name]
[Your Postcode]
We also know that there will be a Backbench Business Debate on the ‘Research and Treatment of Brain Tumours’ next Thursday 8ᵗʰ May, taking place in the main chamber of the House beginning in the afternoon (exact start time TBC).
Again, we would like as many MPs as possible to take part in this, so please could you all drop this note to your MP this weekend too, and please CC me:
Subject: Brain Tumour Debate 8ᵗʰ May
Dear [Your MP],
There will a Backbench Business Debate on the ‘Research and Treatment of Brain Tumours’ next Thursday 8ᵗʰ May, taking place in the main chamber of the House beginning in the afternoon (exact start time TBC).
I would very much appreciate you joining this debate if able and would be hugely grateful if you would share my story.
[Please provide details here that you would be happy to share.]
I am a campaigner for the charity Brain Tumour Research, and it would be great if you could mention their work and the work of the APPG on Brain Tumours too.
Hugh from the Charity is in CC and he would be happy to provide you with a briefing document and any supplementary information you might require ahead of the 8th.
With thanks in advance,
[Your Name]
[Your Postcode]
Thank you all for your support with trying to get the debate and the APPG meeting as well- attended as possible.
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.
Our response is 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 research funding 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.
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, like Vorasidenib, must be made timelier and more 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 £100,000.
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 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 for brain tumours.
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.
Minister Minto with Professor Steve Pollard.
The daughter of a Fife woman who died from a glioblastoma a decade ago has met with the Scottish Health Minister to discuss the needs of brain tumour patients.
Mirren McFarlane, 24, met with Jenni Minto MSP, Minister for Public Health and Women’s Health at the Scottish Brain Tumour Research Centre of Excellence – a game-changing collaboration between Brain Tumour Research and Beatson Cancer Charity. Both charities have committed to funding of £2.4 million over the next five years for the Centre which is split between the University of Glasgow and the University of Edinburgh, to speed emerging glioblastoma treatments into clinical trials.
The Minister said: “It’s been a huge privilege to meet and learn from experts leading research in brain tumours here in Scotland and to hear directly from Mirren McFarlane about her personal journey. The best way to tackle the cancer crisis is through collaboration – especially with dedicated Third Sector partners like Brain Tumour Research and Beatson Cancer Charity.”
Mirren, who lost her mother Lesley to a glioblastoma in 2015, said:
“To policymakers, I would say this: research into brain tumours has been underfunded for far too long. We need more investment, more urgency and more belief that change is possible, because lives depend on it.”
Thomas took time to reflect after the event:
“Scotland has a real opportunity to lead the UK in researching brain tumours – but it will take collaboration to get us there. The foundations are in place – the scientists, the facilities and the ambition. But momentum won’t be maintained without public investment. Matching our funding would send a powerful message that the Scottish Government is serious about transforming outcomes for patients and saving lives.”
APPG Officer Sarah Owen (pictured at our Luton Walk of Hope event) supported us this week by asking two questions regarding DC Vax, a type of immunotherapy called a dendritic cell vaccine.
She asked the Secretary of State for Health and Social Care, when he expects “the Medicines and Healthcare products Regulatory Agency will make public their decision on licensing the personalised immunotherapy developed to treat the malignant brain tumour glioblastoma, DCVax-L.…”
Health Minister Karin Smyth responded:
“Northwest Biotherapeutics has submitted a Marketing Authorization Application to the United Kingdom’s Medicines and Healthcare Products Regulatory Agency (MHRA) for DCVax-L, an immunotherapy for glioblastoma. The MHRA is working with the applicant to reach a decision on this application, to ensure a thorough review that ensures quality, safety, and efficacy.”
In a further question Sarah Owen asked whether his Department plans “to work with the National Institute for Health and Care Excellence to expedite market access to the personalised immunotherapy developed to treat the malignant brain tumour glioblastoma DCVax-L via the NHS.”
Ms Smyth’s response was:
“DCVax-L has not yet been licensed by the Medicines and Healthcare products Regulatory Agency (MHRA) for use in the United Kingdom. The manufacturer has confirmed that it has submitted an application, and it is fully engaged with the Marketing Authorisation process. The National Institute for Health and Care Excellence (NICE) makes recommendations for the National Health Service on whether all new licensed medicines should be routinely funded by the NHS, based on an assessment of clinical and cost effectiveness. NICE aims, wherever possible, to issue recommendations on new medicines close to the time of licensing by the MHRA. The NHS is legally required to fund medicines recommended by NICE, normally within three months of the publication of final guidance. NICE is in discussions with the manufacturer of DCVax-L about a potential appraisal, subject to licensing.”
Clearly, we have work to do to encourage the MHRA to work quickly to speed up the licensing of new therapeutics for brain tumour patients and where possible work in tandem with NICE so that licensing and then market access follow each other with the alacrity required. We look forward to engaging with Lawrence Tallon who began his role as CEO of the MHRA in April.
This week Thomas attended the APPG for Life Sciences which brought together voices from across government, industry, academia and the third sector to kick off a vital series of roundtables. The aim of these being to explore how the UK’s life sciences sector can deliver on its promise to be a cornerstone of economic growth and innovation in healthcare.
As we look towards a new Life Sciences Sector Plan, our first discussion focused on unlocking the full potential of the UK’s world-class research base through:
- Sustainable R&D funding
- Skills development across disciplines
- Pro-innovation regulation and access to data
- Greater collaboration between the NHS, government and industry
Kit Malthouse MP opened with a rallying call for persistence and ambition: “The life sciences should be one of the jewels of the economy.”
With over 6,000 life sciences companies in the UK and 60% sector growth over the last decade, the opportunity is clear – but unlocking it requires collective action.
That is why we were pleased to join this APPG for the first time.
As well as all that has been detailed above, this week, we have been meeting to discuss how best we engage with regulatory bodies, we have facilitated two meetings with Pharma companies looking to improve a brain tumour prognosis and we have met with other charities to collaborate, dovetail and to discuss our ongoing joint support of Scott Arthur Private Members Bill.
We are definitely back in the swing of it after our Easter break and your support of our APPG and debate over the Bank Holiday weekend would really make a difference as we begin a new term in Parliament.
We will be back next Friday. Wishing you all a peaceful time until then.
Karen, Hugh and Thomas