Scotland’s First Minister John Swinney has committed to engaging with Sarcoma UK on recommendations to overhaul sarcoma cancer care after a major new study revealed hundreds of patients are waiting six months or longer for diagnosis of the rare and often deadly disease.
Responding to questions from Dundee City West MSP Joe FitzPatrick in the Scottish Parliament last Friday, Mr Swinney acknowledged the ‘challenges that we continue to face in cancer care’ and pledged that his government would ‘continue to work to identify where improvements can and must be made’ following the release of the ‘Unique Among Cancers’ report.
The commitment comes after the largest qualitative study of its kind ever undertaken in the UK exposed widespread delays in diagnoses and inequalities in sarcoma care.
Systematic failings despite excellent specialist care
The report, released last month by bone and soft tissue cancer charity Sarcoma UK, heard from hundreds of patients and healthcare professionals across all four home nations, uncovering systematic failings in diagnosis pathways despite excellent specialist care once patients finally reach treatment centres.
Drawing on testimonies from patients, families, doctors and researchers, the review exposes how patients are often bounced between services, or dismissed entirely, until the disease is far advanced. Referral pathways are frequently poorly understood or misapplied, particularly for rarer subtypes that disproportionately affect women and young people.
The investigation reveals that dangerous delays in diagnosis are common, often taking six months or longer, with many primary and secondary healthcare professionals lacking training and confidence in identifying this devastating disease.
Rural communities hit hardest
With only five specialist sarcoma centres across Scotland, the review found that severe regional and economic inequalities exist in treatment and care. Rural communities, families with children, and people on lower incomes are disproportionately affected by travel demands.
The treatment landscape for sarcoma remains starkly limited, with near-total reliance on surgery and few meaningful alternatives. Sarcoma research is grossly underfunded, with a clear market failure in the development of new drugs to treat the disease.
Many Scottish patients are logistically or financially shut out of clinical trials, which are small in number and often concentrated in the south of England, resulting in inequity of access to potentially life-saving care.
Mental health support gaps
The review also highlighted inadequate mental health support, with few patients receiving timely or appropriate psychological help despite the enormous emotional strain of navigating a rare and unpredictable disease. Palliative and end-of-life care were also often found to be poorly resourced to meet sarcoma patients’ specific needs.
16 recommendations for change
In response to these findings, Sarcoma UK has developed 16 clear, achievable and mostly cost-neutral recommendations in partnership with sarcoma healthcare experts and people affected by sarcoma, including:
- Expanded access to imaging and diagnostic tools in primary and secondary care
- Urgent investment in sarcoma-specific research and clinical trials
- Action to address the unique mental health challenges of sarcoma diagnosis and treatment
- New guidance to improve palliative and end-of-life support for sarcoma patients
Government response
Mr FitzPatrick had asked the First Minister what the Scottish Government’s response would be to the Sarcoma UK report. In his initial response, Mr Swinney said: ‘I am committed to ensuring that everyone who is affected by cancer, including those with rarer forms such as sarcoma, receives timely, equitable and compassionate care.’
He confirmed the Scottish Government will publish refreshed referral guidelines for suspected cancer, including for sarcoma and bone cancer, this summer ‘to ensure that patients are on the right pathways at the right time’.
In his follow-up question, Mr FitzPatrick said: ‘I am sure that the First Minister agrees that, although sarcoma is a rare form of cancer, every person who is affected deserves timely diagnosis, access to specialist care and the best possible treatment and support. Will the First Minister provide an update on the work that the Scottish Government is undertaking to ensure that that can happen? Will he ensure that his Government engages with Sarcoma UK on the 16 recommendations in its report?’
Mr Swinney gave a clear commitment in response: ‘I certainly give that commitment to engage in relation to the recommendations in the report.’
Charity welcomes government commitment
Richard Davidson, Chief Executive of Sarcoma UK, welcomed the First Minister’s commitment: ‘While we know healthcare professionals work tirelessly to provide excellent specialist care that patients consistently praise, our review exposes unacceptable delays and inequalities that are putting lives at risk before people even reach that care.
‘These aren’t minor administrative issues – they’re systematic failings that mean some patients are dying unnecessarily because of where they live or how long they wait for diagnosis.
‘Governments have made strong commitments to improving cancer care, but these commitments must extend to everyone, including people with rarer cancers like sarcoma. That is why it is so welcome that the First Minister has committed to engage with our recommendations for how sarcoma treatment and care can be improved.’
The report was presented to Health Secretary Wes Streeting at a reception at the House of Commons on 11 June, hosted by Edinburgh South-West MP Dr Scott Arthur, author of the Rare Cancer Bill.
