Following the Scottish Parliament elections last week, The Brain Tumour Charity welcomes the forthcoming formation of a new Scottish government and looks forward to working with MSPs from across the Parliament.
This new parliamentary term is an important opportunity to improve outcomes for people affected by brain tumours in Scotland. Brain tumours are complex, devastating and too often overlooked. Many people still face delays to diagnosis, variation in care and limited treatment options, and this needs to change.
That is why we continue to call for a National Brain Tumour Strategy: a UK-wide approach to improving diagnosis, care, treatment and research for everyone affected by a brain tumour.
In Scotland, this means building on the progress already being made through Scotland’s Cancer Strategy, while ensuring brain tumours are given the focus they urgently need. This blog sets out the progress being made through The Brain Tumour Charity’s Scottish Steering Committee, what we have learned so far, and what still needs to change.
Why a National Brain Tumour Strategy is needed
Across the UK, people affected by brain tumours face challenges at every stage of the pathway, including delays in diagnosis, limited treatment options, gaps in care and support, and a lack of consistent data to properly understand outcomes.
In Scotland, one of the clearest and most urgent challenges is diagnosis. Currently, 73% of brain cancer patients in Scotland are diagnosed through emergency presentation. This means too many people are only diagnosed once their symptoms have become severe enough to require urgent care.
A National Brain Tumour Strategy would help bring together the action needed across diagnosis, care, treatment, research and data, ensuring progress is measurable, coordinated and focused on the needs of people affected by brain tumours.
The Brain Tumour Charity’s Scottish Steering Committee
The Brain Tumour Charity’s Scottish Steering Committee (SSC) brings together clinicians and people with experience of brain tumours to help shape our advocacy work in Scotland. The Committee helps us identify where change is needed, build evidence, and engage with decision makers to improve outcomes for people affected by brain tumours.
Following the election results, David Garcia-Jurado, Chair of The Brain Tumour Charity’s Scottish Steering Committee, said:
“As Chair of The Brain Tumour Charity’s Scottish Steering Committee, we welcome the opportunity to work with the incoming Scottish Government and MSPs from across the Parliament to improve outcomes for people affected by brain tumours in Scotland.
Brain tumours remain one of the most complex and challenging cancers to diagnose and treat. Too many people are still diagnosed in an emergency setting, and too many families face delays, uncertainty and unacceptable variation in care.
There is now an important opportunity to build on the progress already made through Scotland’s Cancer Strategy, and to ensure brain tumours are properly prioritised within its delivery.
The Scottish Steering Committee will continue to work constructively with government, MSPs, NHS Scotland and the wider brain tumour community to support meaningful, measurable progress for patients and families.”
David Garcia-Jurado, Chair of the Scottish Steering Committee
Progress towards faster, better diagnosis
Last year, members of the SSC reaffirmed a commitment to working towards three key objectives to support faster, better diagnosis in Scotland:
- reducing the number of people diagnosed through emergency presentation
- the creation of an optimal timed diagnostic pathway for brain tumours
- supporting the development and adoption of diagnostic tools
Recently, the Committee has been engaging with health boards across Scotland to build a clearer picture of current diagnostic pathways, where progress is being made, and where further action is needed.
What we have learned so far
So far, we have gathered insight from 8 health boards on changes to referral pathways.
We have seen that pathways are now incorporating “headache plus” symptoms and GP direct access to imaging – a reflection of the updates to the Scottish referral guidance for suspected brain cancer. These are welcome steps and reflect recommendations we previously made in our Fighting for a Faster Diagnosis report and which we shared at the peer review session which informed changes to the referral guidance.
This shows that progress is possible, but the information gathered so far also suggests that diagnostic pathways continue to vary across Scotland. That variation matters. A person’s route to diagnosis should not depend on where they live, or which health board they are treated by.
We need a clearer, more consistent approach across Scotland, supported by a gold-standard pathway for suspected brain tumours.
What still needs to change
While there are welcome signs of progress, more action is needed.
First, Scotland needs better data on brain tumour diagnosis. The 73% emergency presentation figure is deeply concerning, but we need a fuller understanding of what sits behind it, including better insight into patient journeys, referral routes, time to diagnosis, and where delays may be happening.
Better data is essential if Scotland is to reduce emergency presentations and measure whether changes to diagnostic pathways are making a difference.
Second, there needs to be greater consistency in diagnostic pathways across health boards. We need to understand where good practice exists, where gaps remain, and how national improvement can be supported.
Third, brain tumours must be properly prioritised within the delivery of Scotland’s Cancer Strategy. Progress on cancer cannot leave behind people with rarer, less survivable and complex cancers.
Our next steps
The Brain Tumour Charity will continue to work with the Scottish Government, MSPs, the NHS, researchers, clinicians and the wider brain tumour community to make the case for change.
The SSC will continue to lead our work in Scotland, gathering evidence, engaging with health boards, and supporting action to improve diagnostic pathways.
Our aim is clear: fewer people diagnosed in an emergency setting, more consistent access to the right tests and support, and faster, better diagnosis for people with symptoms that could indicate a brain tumour. But diagnosis is only one part of the wider change needed.
That is why we will continue to call for a National Brain Tumour Strategy, to ensure people affected by brain tumours receive the focus, care, treatment and research progress they urgently need.
Over the coming months, we will be sharing new ways for people affected by brain tumours in Scotland to get involved in our campaigning work. This will include opportunities to contact your MSPs, share your experiences, and help make the case for faster diagnosis, better care, improved treatment access and more research.
Keep an eye out for upcoming campaign actions and updates on how you can help drive change in Scotland.