This week we were invited to join a small breakfast meeting chaired by the Parliamentary Under-Secretary of State at the Department of Health and Social Care, Baroness Merron ( pictured below with Thomas at the 2024 Labour Party Conference).
The meeting was organised by the Industry and Parliament Trust with a title of 'Health and Wealth: Growing UK Life Sciences' and we were joined by representatives from the pharmaceutical industry, academia, other charities and interested political stakeholders including a predecessor of Baroness Merron as a Health Minister. The meeting was held under the Chatham House Rule which is not unusual for such meetings and we thought you may be interested to know what this convention means.
According to the Chatham House website "the Chatham House Rule is used around the world to encourage inclusive and open dialogue in meetings.
"The Chatham House Rule helps create a trusted environment to understand and resolve complex problems. Its guiding spirit is share the information you receive, but do not reveal the identity of who said it.
"The Rule reads as follows:
"When a meeting, or part thereof, is held under the Chatham House Rule, participants are free to use the information received, but neither the identity nor the affiliation of the speaker(s), nor that of any other participant, may be revealed."
In the spirit of the rule we can say we made a strong case for the need to speed up progress and options for patients diagnosed with a brain tumour in 2025 , as well as embracing the long termism that a 10 year health plan could encourage. We were listened to and hope to further engage with Baroness Merron going forward.
Also, at Westminster this week we met with colleagues from the policy team at The Brain Tumour Charity (TBTC). We both seek to collaborate when appropriate and this was a chance to look at future opportunities where we could combine our voice to amplify the sound made by our community as we endeavour to improve the UK brain tumour experience.
Both charities have areas that are their key areas of focus - clearly for us it is research, for TBTC much of their work is seen through a lens of symptom awareness and earlier diagnosis.
Where we dovetail, we will but our differences are our strengths and that means our approaches to what we are campaigning for and who we are seeking to engage with will be as unique as the charities themselves are.
There was lots to discuss this week at a meeting we had with Euan Stainbank MP (pictured above flanked by Thomas and Evan).
Elected at the age of 24, Euan is currently Scotland's youngest serving MP, is already a member of our APPG on Brain Tumours and he has stated a personal interest in our disease area.
On Thursday, we attended a parliamentary reception hosted by The Neurological Alliance, where we had the opportunity to connect with colleagues from other charities supporting individuals with neurological conditions. The well-attended event featured powerful testimonies from patients with lived experience, whose stories reinforced the critical need for collaboration to better understand these diseases. We look forward to working with The Neurological Alliance to improve outcomes for patients across the UK.
We have mentioned in previous updates that we see our campaigning role will involve more understanding of and engagement with regulatory authorities going forward. A key player here is The National Institute for Health and Care Excellence (NICE). NICE produces guidance on the most effective ways to prevent, diagnose and treat disease and ill health, and provide social care support. Their guidance is based on research evidence and takes into account the views of people working in or using relevant services, and other stakeholder groups.
Partners in the voluntary and community sector are crucial to ensuring that they create guidance that is impactful and acceptable for people with lived experience.
They are currently looking for someone with lived experience (people who have been patients, parents, unpaid carers, people who use health and care services or community members) and their advocates (currently referred to as ‘lay members’ at NICE) to join the committee who develop NICE’s quality standards.
The person who is right for the role will have a real passion for quality improvement across health, public health and social care services. It would also be ideal if they could show us that they have knowledge or experience of *how* to drive up the quality of services through a range of different approaches, for example, through service audits, improvement and action plans, or a programme of training or education for practitioners – but this is not essential.
As a standing lay member on a NICE committee, they won’t have personal knowledge or experience of every topic this committee looks at, but they should have a broad understanding of the issues important to patients and their families or unpaid carers. They will be expected to research topics they are not familiar with so that they can gain this insight and highlight issues of importance for people and communities within the topic area.
See their recruitment advert for details of what working with the committee involves, the kind of experience and knowledge they are looking for, and how to apply. Recruitment is open until 23.59pm on Sunday 9 February 2025.
This week our weekly email ( sent every Friday to our whole database) has been an introduction to our campaigning team. Hopefully because you are signed up for these campaigning updates you already know us but for those of you new to supporting Brain Tumour Research; welcome, and here are the thoughts of the four of us as we enter 2025.
Dr Karen Noble, Director of Research, Policy and Innovation
“With a new Government, it's time to make sure everything we did prior to the election is still on the agenda. Our manifesto asks are of vital importance to our community and transcend those in power – it is our duty to represent that community.”
Hugh Adams, Head of Stakeholder Relations
“We’re proud of the role we have played as the provider of the Secretariat to the All-Party Parliamentary Group on Brain Tumours (APPGBT) and excited to drive the group’s agenda forward with our dynamic new Chair, Dame Siobhain McDonagh. Having lost her sister Margaret to a glioblastoma, Dame Siobhain is intensely motivated to influence real change.”
Thomas Brayford, Policy and Public Affairs Manager
“Much of my role is to make sure we are heard in the corridors of power all across the UK. This year, we'll be holding awareness-raising events in Edinburgh, Cardiff and Belfast and calling on politicians there to support communities who are desperate for change. The devolved nations host some world-class research into brain tumours and this needs to be acknowledged.”
Evan Smyth, Policy and Public Affairs Officer
“Our campaigning support is growing and I’m committed to helping you in contacting your MP – asking them to join the APPG and question Ministers – so we can build a picture of what the barriers to progress are and how we can break them down.”
Thank you for joining us and being a part of our campaigning community.
We are in this together.
Karen, Hugh, Thomas and Evan