Northern Ireland’s Health Minister Mike Nesbitt MLA was presented with a landmark report on Thursday revealing stark inequalities for thousands of sarcoma cancer patients, with some waiting six months or over to be diagnosed.
The bone and soft tissue cancer charity, Sarcoma UK’s Report ‘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 specialist centres.
The report was presented by Sarcoma UK’s Chief Executive Richard Davidson to Mr Nesbitt at a reception at Stormont attended by MLAs and the newly crowned Miss Northern Ireland, Carly Wilson, who is a survivor of sarcoma cancer.
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 one specialist sarcoma centre in Northern Ireland, 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 Northern Ireland 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.”
Northern Ireland’s Health Minister, Mike Nesbitt MLA, said: “The Sarcoma UK State of the Nation review report provides us all with very helpful and detailed insight into the treatment and care of sarcoma across the UK. I am pleased that many of the recommendations from the review align with actions in the Cancer Strategy for Northern Ireland 2022 – 2032, and work that is currently underway across my Department. This provides me with reassurance that we are on the right track, with our visions aligned for a better future.”
Professor Anant Desai, Consultant Sarcoma Surgeon at the Queen Elizabeth Hospital Birmingham and President of the British Sarcoma Group added: “Sarcoma is unique among cancers, not only in how it presents in patients, but in how it is understood, recognised, and prioritised by government and the NHS. Sarcoma UK has produced this report to highlight these issues and to offer a constructive way forward. The recommendations in this review are achievable and grounded in the voices of people affected by sarcoma and those who care for them. They will improve diagnosis, increase access to clinical trials, ensure better mental health and palliative care support, and help tackle the persistent inequalities that relate specifically to sarcoma as a disease. I urge governments across the UK to read this report carefully, but most importantly, act on its findings.”
Newly crowned, Miss Northern Ireland 2025 Carly Wilson, 23, who is a sarcoma survivor, said: “As a patient of sarcoma services in Northern Ireland, I believe everyone deserves equal access to specialist care. This review is a chance to build a stronger health care system where no patient feels underserved, bringing adequate services to patients and families across Northern Ireland, allowing for better patient outcomes and brighter futures close to home.”
Miss Northern Ireland speaking to Health Minister, Mike Nesbitt
