Brain tumours are the biggest cancer killer of those under 40. Yet, despite this, standard NHS treatment for brain tumours is unchanged for decades. We also know that brain tumour clinical trials often have some of the lowest recruitment levels amongst other cancers. Additionally many community members continue to encounter difficulties in getting diagnosed. All of this must change.
Now, as part of our work to build a National Brain Tumour Strategy, we have launched a new policy project to identify and understand potential barriers to the development and delivery of innovations which may help address some of the challenges noted above.
Hosting a roundtable with life-science innovators
This week, as part of this project we hosted a roundtable event in Westminster. At the roundtable, which was kindly chaired by Sarah Edwards MP, we were joined by a range of representatives from the life sciences industry including the Association of the British Pharmaceutical Industry (ABPI) and Association of British HealthTech Industries (ABHI).
The roundtable provided a platform for innovators to share information on the challenges they have and are encountering in regards to the development and delivery of innovation as well as improvements that should be considered. This has enabled us to identify and recognise some initial barriers to innovation.
The challenges that have been shared will now inform future discussions we will continue to have with key stakeholders. The information and insights we are gathering will be included in a future report which we are aiming to deliver in early 2026.
Thoughts of community advocates
Alongside industry voices, we were privileged to hear from two community advocates who brought powerful lived experience into the discussion.
Being in a room full of people dedicated to helping others like me truly made me feel seen and heard by the wider community.
Owen Sutton, community advocate and Young Ambassador
Owen Sutton, a Young Ambassador for The Brain Tumour Charity and constituent of Sarah Edwards MP shared:
“I had a wonderful time at the roundtable. It was inspiring to meet Hannah Lemanski and hear about the challenges she’s overcome to access the treatment she needed. I’m also so grateful to my local MP, Sarah Edwards, who went above and beyond to organise the event. Being in a room full of people dedicated to helping others like me truly made me feel seen and heard by the wider community.
Having the chance to sit down with people from business, charities, and parliament was truly moving for me. Being able to share what I’ve been through and to sit alongside others with lived experience made me feel less alone. There was such a powerful sense of understanding in the room, and it gave real weight to our voices as we spoke about the urgent need for funding, for more research, and eventually, a cure.”
Hannah Lemanski, a paramedic from Middlesbrough, who like Owen, represented the ‘patient voice’ at the roundtable said:
“As someone who has faced a barrier to my own treatment I found the roundtable very insightful. I gained a deeper understanding of the complexities surrounding access to innovation for NHS brain tumour patients. But it was also reassuring to hear the positive steps being made to try and improve the way brain tumour diagnosis’ and treatments are delivered within the health service. I hope that change can be made; facing a brain tumour diagnosis is the most challenging aspect of my life – bureaucracy, in my opinion, should not stand as another barrier for us to face.”
Hannah added,“it was a privilege to be invited to speak at the roundtable and be involved in this project. I hope that Owen’s stories and mine resonated. We are just two patients out of thousands of people suffering with brain tumours in the UK. I hope that anyone else who is potentially facing a barrier to their care, feels some reassurance that constructive steps are being made to change the way we get access to innovation.”
We thank both Owen and Hannah for attending and contributing so effectively throughout the roundtable.
Reflections of Sarah Edwards MP
Sarah Edwards, MP for Tamworth, who chaired the event shared: “I was delighted to chair yesterday’s [Wednesday 3rd September] roundtable alongside my constituent, Owen. It’s vital that we not only identify the challenges in brain tumour care but also focus on how we can overcome them. Hearing directly from both patients and experts was invaluable in shaping that conversation.
Following the roundtable, I also met with the Parliamentary Under-Secretary of State for Public Health and Prevention, Ashley Dalton MP and I’m encouraged that she has already been in discussions with the charity. I now look forward to seeing the final report the charity delivers with the gathered insights and findings.”
We thank Sarah for her continued support and for chairing such an excellent and informative discussion.
Next steps
This roundtable is just the first step in this policy project. Over the coming months we will continue gathering evidence from patients, clinicians, policymakers and industry to build a strong case for change.
Our goal is clear: to unlock innovation, remove unnecessary barriers, and ensure new treatments and technologies reach brain tumour patients faster.