Hello everyone,
We were honoured to welcome Secretary of State for Health and Social Care, Wes Streeting, to our Scottish Brain Tumour Research Centre of Excellence last week, to hear first hand the urgent need for greater research investment that brain tumour patients deserve. and was made aware of the urgent improvements to care and treatment that brain tumour patients deserve.
The Health Secretary, alongside Dr Scott Arthur MP, toured our labs in Edinburgh dedicated to testing innovative new treatments for glioblastoma, the most common form of adult brain cancer in the UK, with the aim of increasing the number of clinical trials. Learn more about the visit in our Latest News item.
Brain Tumour Awareness Month is now in full swing.
Following Shine a Light and our reflective minute’s silence at the start of last week, on Tuesday 3rd we joined with the Brain Tumour Charity to host an event at Westminster to bolster understanding of why we campaign as we do.
Long term supportive MPs mixed with newer faces as we explained that following recent developments such as the launch of the National Cancer Plan and the funding of the NIHR Brain Tumour Consortium, we are now heading toward a period of implementation and reporting.
One of the learnings from the allocation of £40 million in 2018 was that allocation is not deployment and, in the end, we had to chase, lobby and complain with great intensity to get the money finally in the hands of the researchers.
We mustn’t let that delay happen again and must push on with dogged persistence to make sure promises made are held and that new ideas are speedily implemented.
There were many nodding heads on Tuesday as we explained our thinking.
Thank you to all who reached out to your MPs, asking them to join us on Tuesday – it was a great turnout and you can read more about the event here.
Any mention of the National Cancer Plan brings Ashley Dalton to mind.
When she joined our APPG in May 2025, she spoke of the honour of having the delivery of the plan in her portfolio and now that the plan has been delivered, Ashley has resigned on health grounds, saying she needed to make "reasonable adjustments" as she continues to live with advanced breast cancer.
Dan Knowles, CEO at Brain Tumour Research, said:
"Ashley has been a tireless champion for research into brain tumours, while going through her own breast cancer diagnosis and treatment. It has been a privilege working with her to fight for change for our community. We wish her well as she focuses on her constituency and her health."
Ms Dalton’s role, Minister for Public Health and Prevention, has now been taken by MP for Washington and Gateshead South, Sharon Hodgson, and we look forward to engaging with Minister Hodgson in the very near future.
We are very proud to end this packed update with the very latest news that the Rare Cancers Bill has now become the Rare Cancers Act 2026. As we wrote at the beginning of the update, now it is the time for implementation – the word for 2026.
Finally, vorasidenib has been approved for use in the NHS in Scotland. The Scottish Medicines Consortium (SMC) announced the decision earlier this week, meaning the drug, which has been shown to extend progression-free survival, will be available for suitable patients with astrocytoma or oligodendroglioma. You can read more about this here.
That is all for this week. We will be back with a fresh update soon and we wish you all a peaceful time until then.
Karen, Hugh, Katherine and Jana.
