Manifesto for Scotland
We are calling for three critical commitments
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Acknowledge and prioritise brain tumours as a cancer of unmet need
Commit to increased funding by formally declaring brain tumours as a research priority area and creating a specific budget category to commit to increased funding for research, including supporting the Brain Tumour Research Centre of Excellence at the Universities of Edinburgh and Glasgow
Address inequity in access to treatment by establishing an innovation-led plan to address geographical inequity for patients in Scotland to access new medicines and treatments being rolled out -
Mandate and fund universal genome sequencing for all brain tumour patients
Ensure universal access to whole genome sequencing by mandating and funding that 100% of brain tumour patients in Scotland are routinely offered crucial biological data
Resource and deliver timely results through addressing known limitations in the genomic medicine service, including workforce shortages of scientists and clinical geneticists, long waiting lists and slow turnaround times for results
Address gaps in testing infrastructure and prevent the need for Scottish samples to be sent outside Scotland for sequencing -
Working together for systemic change
Establish a working partnership with Brain Tumour Research to ensure a coherent, all-systems approach to tackling health inequalities
Encourage NHS innovation adoption by reviewing funding flows, leadership and culture. Ensure the effective integration of new medicines and clinical trials
Strengthen research support to practically translate research at critical stages where barriers have existed, making venture capital funding difficult to secure
Patients and families calling for change
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“When I was told I had a brain tumour; the last thing I expected was that I would also have to fight to access treatment. Low grade gliomas are still cancerous and deadly. They are progressive, life-changing and incurable, yet they are too often minimised or deprioritised because they don’t fit the public perception of what cancer looks like.
“Living with a brain tumour means living with constant uncertainty, repeated scans, and the knowledge that intervention is often delayed until irreversible damage has already occurred. Patients should not be left to navigate research gaps and clinical trial access on their own at the most frightening point of their lives.
“This country needs greater investment in research into brain tumours and fairer access to innovative treatments and trials. It should not be the responsibility of someone facing a life-changing diagnosis to join the dots.”
Archie Goodburn, champion British swimmer, living with three incurable oligodendrogliomas -
“Being diagnosed with a brain tumour is devastating enough, without finding out that patients in Scotland are being left behind in the hunt for new treatments. Options are running low for me, but I will keep fighting so that brain tumour patients now, and in the future, do not face injustice. The technology to make a difference is there – let’s use it.”
Theo Burrell, Brain Tumour Research Patron and glioblastoma patient -
“When our fit and healthy son Jay was diagnosed with an incurable brain tumour at just 18, we naively assumed something would be available to help save him. As we now know, and as so many families across Scotland quickly realise, treatment options are either non-existent or limited, and prognosis has remained largely unchanged for decades.
“Jay faced his diagnosis with such bravery and acceptance, but courage can only take you so far, and, devastatingly, he died 18 months later.
“Greater investment and support for research into brain tumours is vital, and opportunities for clinical trials and new drugs must be equally available here in the UK. We have the technology here in Scotland, we must use it, so that in the future other families do not have to live with the heartbreak we now must.”
Dawn Kennedy, mother of Jay Kennedy who died aged 20 of astrocytoma in 2021
