At yesterday’s meeting of the Cross-Party Group (CPG) on Brain Tumours in the Scottish Parliament, clinicians, researchers, patients and charity advocates delivered a unified message: bureaucracy is holding Scotland back from delivering world-class care to brain tumour patients.
Three key priorities were raised:
The meeting highlighted multiple examples where delayed or unavailable genomic sequencing – a critical tool in diagnosing and treating brain tumours – has had serious consequences for patients.
Dr Mark Brougham, a paediatric oncologist at NHS Lothian, described a case where sequencing, outsourced to Great Ormond Street Hospital, revealed a different tumour subtype weeks later – a delay that could have compromised treatment.
“These aren’t academic niceties,” he said. “They’re fundamental to getting treatment right.”
Ms Emer Campbell, a neurosurgeon from the Royal Hospital for Children in Glasgow, shared another case in which sequencing results prevented a life-altering surgery by enabling targeted chemotherapy. But, she warned, “It took four weeks post-biopsy to get that answer – we could have done this in Scotland in a matter of days.”
Solutions exist – but are blocked
Scotland’s universities already have validated long-read sequencing capabilities. However, they remain unutilised in clinical settings due to a lack of accreditation from the National Services Division (NSD).
Professor Colin Smith of the University of Edinburgh called this a “false economy”, noting that relying on external labs creates delays and costs more. “We have the tools. The only barrier is bureaucracy,” he said. “Scottish patients are being denied timely access to trials and treatments.”
During the meeting, one patient campaigner described his battle to access Vorasidenib, a potentially life-saving drug available in some Scottish regions but not others. “It’s postcode prescribing,” he said. “We need leadership to fix this national lottery.”
Dr Sorcha Hume of Cancer Research UK emphasised the importance of Scotland keeping pace with global research, warning that patients risk exclusion from major international trials due to a lack of genomic sequencing infrastructure.
Spotlight on research leadership in Scotland
Dr Joanna Cull, our Research Funding Officer, presented 'The Scottish Brain Tumour Research Centre of Excellence – The Story So Far', highlighting the Centre’s progress and its important role in driving translational research. She urged the Scottish Government to recognise brain tumours as a cancer of unmet need, match-fund the Centre, expand research capacity, and provide core funding for essential roles such as clinical research nurses and data analysts.
A call to action
As the session concluded, we issued a direct call to Scottish Government: Scotland has the brains and the tools – but red tape is currently standing in the way. We’re urging Scottish Government to cut through the bureaucracy, back our experts, and make sure every brain tumour patient in Scotland gets equal access to the tests, treatments, and trials they deserve, no matter their postcode.
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