A new investigation by the charity Sarcoma UK has revealed some patients go through an agonising six month wait before getting a potentially life-saving diagnosis.
The bone and soft tissue cancer charity’s ‘Unique Among Cancers’ report heard from hundreds of sarcoma patients and healthcare professionals across the UK, uncovering systematic failings despite excellent specialist care once patients finally reach treatment centres. 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.
There are two main types of sarcoma: soft tissue sarcoma and bone sarcoma (also known as primary bone cancer). They are usually found when a lump appears on the leg, arm or trunk. Every day, 15 people are diagnosed with sarcoma in the UK. That’s about 5,300 people a year.
But patients, families, doctors and researchers told the review how patients are often bounced between services, or dismissed entirely, until the disease is far advanced.
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.
With only 17 specialist sarcoma centres across the UK, 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 report also found that the treatment landscape remains limited, with near-total reliance on surgery and few meaningful alternatives. The review identified that sarcoma research is significantly underfunded, with clear market failure in developing new treatments. Many patients are excluded from clinical trials due to location or economic status.
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.
In its report, Sarcoma UK has developed 16 clear recommendations in partnership with sarcoma healthcare experts and people affected by sarcoma.
The Department of Health and Social Care has now said it will examine the findings of Sarcoma UK’s report and its recommendations.
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 Department of Health and Social Care has agreed to examine our report, as well as its recommendations for how sarcoma treatment and care can be improved.”
Health Minister, Karin Smyth MP, said: “As someone who has faced cancer, I know the fear that comes with a diagnosis, along with the relief when treatment begins. These findings are deeply troubling – no patient should face delays or barriers to care simply because of where they live or what type of cancer they have.
“Sarcoma patients deserve the same high-quality care as anyone else, which is why I welcome Sarcoma UK’s thorough investigation and recommendations. Our Plan for Change will improve cancer outcomes, ensuring everyone receives the right care, at the right time, regardless of their diagnosis.”
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.”
