In August, members of The Brain Tumour Charity’s Scottish Steering Committee (SSC) took part in a charity-led workshop to reflect on the past two years of work – celebrating progress, acknowledging challenges, and importantly, agreeing the Committee’s focus for the next two years.
Formed in 2018, the SSC was established to drive our policy, campaigning and influencing work in Scotland. This voluntary group includes people living with a brain tumour, have been personally affected or work in a healthcare setting in Scotland. It now includes over 12 members.
In 2023, SSC members agreed to focus on a key issue: achieving a faster, better diagnosis for those presenting with brain tumour-related signs and symptoms. As part of our governance structure, we refresh our membership and priorities every two years and this summer, members unanimously agreed to continue prioritising improved diagnosis.
Before we share more about the Committee’s future direction, here’s a look at some of the progress made over the past two years.
Progress that has been made
Over the past two years, we are proud with the progress has initially been made in Scotland to achieve the SSC’s objective of delivering a faster, better diagnosis. The SSC has:
- Supported the organisation of a roundtable discussion to better understand the barriers to early diagnosis in Scotland. This led to a published report and a follow-up meeting with the Cabinet Secretary for Health, Neil Gray, who later visited the laboratory of the Dxcover team.
- Mapped the diagnostic landscape for brain tumours across Scotland by submitting FOI requests to all 14 Scottish health boards. These requests helped identify what data is held on brain tumour diagnosis and what diagnostic pathways currently exist.
- Analysed Insights from the FOI responses which informed our work on GP Direct Access to Imaging. This played a key role in shaping our involvement to supporting updates to the Scottish Referral Guidance for Suspected Brain Cancer – securing vital changes to support primary care professionals.
- Supported events at the Scottish Parliament during Brain Tumour Awareness Month, raising awareness of the challenges facing the brain tumour community and engaging directly with MSPs.
We thank every SSC member both past and present, for their time, commitment, and passion. But we know there is still a long way to go. Alarmingly, we now know that 73% of brain cancer diagnoses in Scotland occur in an emergency setting, the highest of any cancer type.
New objectives of the Scottish Steering Committee
This summer, SSC members reaffirmed their shared goal: to achieve a faster, better diagnosis across Scotland.
To define the next phase of this work, members engaged in a thoughtful and powerful discussion, sharing personal experiences, reflecting on recent developments, and considering the broader policy landscape, including the Cancer Strategy for Scotland and updated cancer referral guidance.
From these conversations, the SSC agreed on three clear and ambitious objectives:
- Improving referral pathways for those presenting with brain tumour signs and symptoms.
- Embedding innovation in diagnosis across Scotland.
- Reducing the number of diagnoses in an emergency setting in Scotland.
Members are committed to delivering change and driving improvements in how brain tumours are diagnosed in Scotland. With passion, lived and professional experience, and a clear direction, we are confident the SSC will continue to make a meaningful impact.
“A platform to channel my first-hand experience into meaningful action”
Sharing why she applied to join the SSC, Sian Evans, Regional Visitor and Community Manager for North Region at Historic Environment Scotland said:
“I don’t have any direct personal experience of brain tumours, but I was really struck by following the story of Laura Nuttall through her mum, Nicola. The way they used such a difficult diagnosis to raise awareness and inspire others really stayed with me, and it made me want to get involved and support the work of the Brain Tumour Charity here in Scotland. So, when the opportunity came up to join the Scottish Steering Committee I jumped at the chance.
“Joining the Committee feels like a way I can contribute, even without lived experience myself. I’m looking forward to learning from others, connecting with people who share the same passion for making things better, and playing a part in making sure the voices of those affected by brain tumours are heard.
“What I hope we can achieve together, is advocating for change that improves quality of life – from more timely diagnosis to improvements in treatment and improving the visibility of all family members who are affected by a diagnosis given to a loved one. Even small steps forward could make a big difference for people and families across Scotland.”
We’re really grateful to have our new members join the Committee and to have such a powerful, dynamic and exciting SSC. It’s going to be thrilling to see what’s achieved over the coming months once the subgroups kick off. We’ll be sure to keep the community updated on the progress of the SSC in Scotland.
Thoughts of the Chair of the Scottish Steering Committee
Our commitment is simple, we will use the SSC’s convening power to help remove bottlenecks, propose new and better approaches, scale what works, and keep the community’s voice at the centre – so faster, better diagnosis becomes the norm across Scotland.
David Garcia, Chair of the Scottish Steering Committee
David Garcia, Chair of the Scottish Steering Committee shared this message:
“We bring lived experience and professional expertise around one table, and that mix gives us both urgency and pragmatism. Over the next two years we will focus on three things that matter most to families: getting people with concerning symptoms to the right scan sooner; accelerating the use of proven diagnostic innovations; and cutting the number of diagnoses that still happen in crisis.
“We are not starting from scratch. We have already mapped how diagnosis works across different Scottish health boards and used those insights to help inform improvements to Scotland’s referral guidance – practical steps that support GPs and get patients onto the right pathway earlier. Now we will build on that foundation with health boards, clinicians and government; co-designing fixes inside real clinics; backing pilots that show measurable gains; and publishing the metrics so the community can track what is changing and where.
“This is about momentum and accountability. The emergency diagnosis rate remains unacceptably high, and every delay adds worry at the toughest moment in people’s lives. Our commitment is simple, we will use the SSC’s convening power to help remove bottlenecks, propose new and better approaches, scale what works, and keep the community’s voice at the centre – so that faster, better diagnosis becomes the norm across Scotland.”