The newly re-established Cross-Party Group on Brain Tumours in Scotland has agreed its key areas of focus for the parliamentary session, with members committing to keep pressure on improving research, diagnosis, treatment and care for people affected by brain tumours in Scotland.
The first meeting of the new parliamentary session, convened by Finlay Carson MSP, was held on Wednesday 9th September. We are proud to act as the secretariat for the group, bringing together politicians from across the political spectrum to ensure the needs of brain tumour patients in Scotland are prioritised.
The meeting was attended by MSPs, clinicians, charity representatives and brain tumour patients, including elite swimmer and brain tumour campaigner Archie Goodburn. We want to make sure that MSPs understand the challenges faced by brain tumour patients, and the inequalities compared to other parts of the UK, so that they can help influence and shape Government policy.
A focus on research, diagnostics and trials
The first meeting provided an opportunity to agree core areas where the group can work to leverage change with the Scottish Government and NHS Scotland, and focused on three priority themes:
- Improving access to clinical trials and innovative treatments
- Strengthening research funding and infrastructure, including whole genome sequencing
- Improving diagnosis, treatment pathways and patient experience
Patients in Scotland can face barriers to taking part in clinical trials, including administrative complexity when opening multi-site trials across NHS boards. Reducing bureaucracy could help Scotland become a more attractive place for clinical research and improve access to new treatment options.
Research infrastructure was also identified as a major priority and there is a need for Scotland to keep pace with developments elsewhere in the UK, particularly in relation to whole genome sequencing, precision medicine, translational research and specialist workforce capacity in neuro-oncology.
Early diagnosis and patient experience were central to the discussion. Members considered how referral pathways, GP awareness, radiology access, data linkage and innovations such as liquid biopsy could support earlier diagnosis and better coordinated care.
Next steps
The Group agreed to:
- Feed into the forthcoming parliamentary health inquiry on clinical trials and access to treatments to the brain tumour community perspective is included
- Further engage with the Scottish Government on diagnostic and treatment pathways, Whole Genome Sequencing and GP training
- Strengthen the relationship with the Cancer CPG to maximise parliamentary opportunities to maintain momentum on brain tumours
Cross-party group meetings play an important part in our campaigning activity in Scotland. If you would like to get more involved in campaigning for change for the brain tumour community, get in touch: campaigning@braintumourresearch.org
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