Hello everyone,
This week at Westminster, in the Thatcher Room of Portcullis House, the APPG on Brain Tumours met for the second time in 2026.
We were joined by Health Minister Sharon Hodgson MP who keenly listened to the experiences, distress and hopes of the brain tumour community.
The meeting’s minutes will provide a comprehensive overview of what happened on Tuesday.
Once read and approved by our Chair, Dame Siobhain McDonagh, they will be uploaded to our website in the usual way.
We generally have four meetings of the APPG a year and they provide a significant time focus for the campaigning team at Brain Tumour Research.
It is really important for us to listen as well as talk and the 30 minutes inevitably flies by.
Firstly, there is the forward planning.
This includes booking rooms, sending of ‘Save the Date’ emails to MPs and Lords, meeting our obligations to keep the overseers of all APPGs informed on a meeting-by-meeting basis, ensuring that we are in alignment with their rules and regulations.
We also need to hold an Annual General Meeting (AGM) to remain compliant with this requirement.
Meetings need to have as many Parliamentarians in attendance as possible; there are requirements on numbers to make the meeting quorate for official business to take place.
MPs are incredibly busy, so they need regular meeting reminders from us, along with specially prepared agendas and briefing documents.
There are the extraordinary meetings too, like the one set for 2nd July, which is just for Officers and Members of the group to consider and vote on changing the group’s name from the APPG on Brain Tumours to the APPG on Brain Cancer and Brain Tumours.
Then there is the work that results from a meeting.
Known as ‘Matters Arising’ it is a standing item at all meetings and it is the part where we report on what we, as the secretariat, agreed to do after the last meeting.
This is a vital duty as it is what drives the group forward and avoids repetition of effort.
To give you a flavour from Tuesday’s ‘Matters Arising ‘report, here are just some of the action points from our February meeting and what we have done in the period before Tuesday’s meeting to address them:
1. Action: Secretariat to secure an APPG meeting with the Rare Cancer Research Lead and Clinical Lead in National Cancer Plan. The update is that these positions are not yet in post but the advert for the Clinical Lead has gone out and the deadline was Sunday
2. Action: For the NIHR Consortium to provide more detail on milestones. We were able to report back on a series of NIHR Consortium webinars with themes including Precision Therapeutics, Emerging Therapeutics, Real World Data and Advanced Analytics/Data Sharing, Capacity Building Programme and Community Engagement
3. Action: A letter from our Chair to be sent to the NIHR regarding funding decisions This was sent to NIHR CEO Professor Lucy Chappell on 23rd March and a reply received on 2nd April included this update: “This brings the total expected investment to over £25 million. The NIHR is working to ensure that all new investments can get up and running as soon as possible. We are balancing the need for timely progress with the requirement to complete comprehensive due diligence processes, which are essential with such significant investments.”
It continued: “For the associated work packages of the Consortium, intent to fund letters were issued in December 2025. These outline DHSC's intent to award funding upon acceptance of the terms and conditions set out in the Research Contract. We would typically expect contracting would take several (sometimes up to 6-8) months from the intent to fund letters, with the timeline driven by the host institution and their internal processes as much as the NIHR; we are expecting this timeframe to be condensed for the Consortium.” We have drafted a response to Professor Chappell’s response, requesting further detail on the timeframe for ‘condensing’ and regular NIHR funding updates ahead of future APPG meetings
4. Action: Draft a letter from Parliamentarians to the relevant authorities, advocating for the adoption of a similar approach to brain tumour research data as was implemented during the pandemic. Our update was that a supportive MP, John Slinger, asked the Secretary of State for Health and Social Care, “what assessment he has made of the potential merits of automatically utilising brain tumour patients’ anonymised data to create relevant datasets for clinical research.” We could further update that a response from then Minister Ahmed had been received and that he had written: “As part of the consortium’s work, patients will be enrolled to a ‘Real World’ study tracking their progress in everyday medical settings, before matching them to new clinical trials based on their cancer subtype.”
5. Action: Secretariat to draft letter from APPG Chair to CEO UKRI. This has been completed, and in the letter we wrote that: “Around 80% of research funding for brain tumours in the UK comes from charities. If we are to see real progress, there needs to be stronger alignment between government funders to ensure that early-stage discovery research is supported and can feed into the translational work now being developed through the consortium.”
6. Action: Schedule extraordinary meeting to consider APPG name change – On Tuesday we updated that the 2nd July is the date and all our Officers and Members have been asked to ‘Save the Date.’
So, in the diary we have a meeting in July, an AGM in October before a full meeting later in the Autumn (as soon as we are able we will let you know the actual date) and then in early 2027 we will invite the Consortium leads back to review their year and it will also be time for the APPG to consider the impact for brain tumour patients of both the National Cancer Plan and the Rare Cancers Act on their first anniversaries.
There is a great deal in serving as the Secretariat of the APPG which is why we are proud to hold the role and continue to advocate for the policy and funding changes that will improve options and outcomes.
At Brain Tumour Research that is what we do.
We will be back next week, and we wish you all a peaceful time until then.
Karen, Hugh, Katherine and Jana
