Hello everyone,
This week we welcomed the Government’s latest announcement on clinical trial reform, which will be set out in its new 10 Year Health Plan.
As part of the Government's reforms, millions of people will be able to join clinical trials more easily via the NHS App, helping to accelerate access to innovative treatments for conditions including brain tumours. The National Institute for Health and Care Research’s (NIHR) Be Part of Research service will now be integrated into the app, which will then automatically match patients with relevant studies based on their health data.
This is a potentially groundbreaking development for the brain tumour community, where a lack of access to trials and slow set-up times have long held back progress. With the average trial set-up time in the UK currently at 250 days – compared to just 100 in Spain – the Government’s commitment to reduce this to 150 days or less by March 2026 is especially welcome.
Public reporting of NHS trusts’ clinical trial activity and prioritised funding for high performers could drive much-needed accountability and performance improvements.
Dr Karen Noble (pictured above), Director of Research, Policy and Innovation at Brain Tumour Research, said: “This plan has the potential to deliver real change to brain tumour patients and their families. Faster, fairer access to clinical trials is vital in the fight against this devastating disease.
“It is equally vital that the research ecosystem is in place and funded to drive progress and innovation from the scientist’s bench to clinical trials at the patient’s bedside. We look forward to seeing these reforms translated into action, especially for the brain tumour community, and will continue to campaign for improvements along the entirety of the translational pathway.”
We encourage all eligible individuals to sign up to Be Part of Research and help to shape the future of treatment and care.
The Charities Medicines Access Coalition (CMAC), which we are pleased to be a part of, is calling for the Department of Health and Social Care and The Association of the British Pharmaceutical Industry (ABPI) to increase communication with charities and share clear evidence that patient impact is at the heart of the ongoing Voluntary Scheme for Branded Medicines Pricing and Access (VPAG) discussions.
The review of VPAG, expected in autumn 2025, has been brought forward and is due to conclude at the end of June 2025. Neither CMAC, nor any of the individual patient organisations they represent have been consulted during this review process.
VPAG is a contract between the Government and the pharmaceutical industry designed to make the UK an attractive place to research and launch new medicines. The terms agreed impact patient access to innovative treatments.
The Government and the pharmaceutical industry must have open meaningful discussions with patient organisations within this review and ensure all proposed changes to the scheme are formally assessed for their impact on NHS patients.
The Cross-Party Group on Brain Tumours met on Thursday at Holyrood and we will have a detailed report on what happened next week, however, as the secretariat provider, we set up a full agenda to be overseen by the group’s convenor Beatrice Wishart MSP (pictured above).
This included the Tessa Jowell Brain Cancer Mission presenting to MSPs on ‘Closing the Gap – Genomics and Access to Trials’, our colleague Dr Joanna Cull presenting on ‘The Scottish Brain Tumour Research Centre of Excellence – The Story So Far’, Dr Sorcha Hume from Cancer Research UK talking about ‘Advancing Brain Tumour Research – A National Perspective’ and brain tumour patient Archie Goodburn sharing his personal story of challenges in accessing Vorasidenib.
Someone else who has shared their own story is Daniel Horrocks (pictured with wife Sonia at our recent Gala dinner) and we were thrilled to learn in the King's Birthday Honours announced at the weekend that Dan, “Members‘ Staff for Kingswinford and South Staffordshire and Brain Tumour Awareness Campaigner” has been awarded a British Empire Medal (BEM) “for services to Parliament”.
We also send our sincere congratulations to Tina Mitchell Skinner the founder of the Brain Tumour Support charity, who is receiving a well-deserved MBE “for services to people affected by brain tumours” and to Jane Lyons who for so long has been the driving force behind Cancer 52 who will also receive an MBE for “services to people with cancer”.
A positive and productive week.
We don’t just hope for the same next week, we expect it.
Let’s keep working together to make a difference.
See you next Friday and of course wishing you all a peaceful time until then.
Karen, Hugh and Thomas