Scottish Government backs review of sarcoma treatment after new report reveals stark inequalities in care

Following the report’s release last week by the bone and soft tissue cancer charity Sarcoma UK, the Scottish Government says it will review sarcoma treatment and care. The report was presented to Health Secretary Wes Streeting at a reception at the House of Commons on Wednesday hosted by Edinburgh South West MP Dr Scott Arthur, author of the Rare Cancer Bill.

The report titled 'Unique Among Cancers' is the largest qualitative study of its kind ever undertaken in the UK. It heard from hundreds of patients and healthcare professionals across all four nations, uncovering systematic failings despite excellent specialist care once patients finally reach treatment centres.

The Scottish Cabinet Secretary for Health and Social Care, Neil Gray MSP, has now agreed to review the findings of the report and its 16 recommendations for how sarcoma treatment and care could be improved.

Dr Scott Arthur MP, Richard Davidson, Chief Executive of Sarcoma UK, Nicola Crowson, Patient Advocate, Wes Streeting, Health Secretary and Professor Anant Desai, Chair of the British Sarcoma Group

What the Review Found - Excellent Care Undermined by Issues with Diagnosis

While the vast majority of sarcoma patients speak positively about the treatment they receive once they reach a specialist centre, the state of the nation review of sarcoma care has also uncovered widespread, systemic failings and inequalities in their overall experience.

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. The report also found access to diagnostic imaging remains severely limited and uneven across the UK.

Access and Equity Concerns

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.

Meanwhile, the treatment landscape for sarcoma remains starkly limited. There is a near-total reliance on surgery, with few meaningful alternatives. It is apparent from our evidence that sarcoma research is grossly underfunded, with a clear market failure in the development of new drugs to treat the disease.

Equally, many patients in Scotland are logistically or financially shut out of clinical trials, which are small in number and often concentrated in the south of England, resulting in an inequity of access to potentially lifesaving care.

Mental Health and 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.

Call for Action

In its report, 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

Richard Davidson, Chief Executive of Sarcoma UK, said: "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 Scottish Government has agreed to review the findings of our report, as well as its recommendations for how sarcoma treatment and care can be improved."

Cabinet Secretary for Health and Social Care, Neil Gray MSP, said: “I welcome the finding that specialist cancer care in Scotland is of a high standard, and I am committed to ensuring that everyone affected by cancer – including those with rarer forms like sarcoma – receives timely, equitable, and compassionate care. We will publish our refreshed Scottish Referral Guidelines for Suspected Cancer, including for soft tissue sarcoma and bone cancer, later this month to ensure that patients are on the right pathways at the right time.

“The Scottish Government will consider the findings of this report and will continue to work with clinical experts, patients, and the third sector to identify where improvements can and must be made.”