This report gives a frank snapshot of what the current sarcoma landscape looks like in the UK, and reveals how sarcoma and a general lack of awareness around the cancer can have a devastating impact on both patients, their families and friends, from diagnosis through to treatment.
Delays Cost Lives highlights how poor awareness of symptoms among the public and healthcare professionals, made worse by a complex diagnostic pathway, means that sarcomas often go misdiagnosed or are simply ignored and dismissed.
Following the success of National Sarcoma Survey in 2015 and the invaluable data it collected, Sarcoma UK decided to re-run the survey in 2020 with a broadened purpose: to collect data on sarcoma patient experience in order to build an evidence-base for influencing. This was also expanded beyond adult sarcoma patients to include children with sarcoma and family and carers of those with sarcoma.
Once again, the results from the survey have created a robust dataset. The data has allowed us to build a clearer picture of patients’ experience of the diagnosis, treatment and emotional impact of sarcoma. It has both drawn attention to and given evidence for areas where further policy and campaigning work can be undertaken.
Demonstrating the value of Sarcoma UK’s work to supporters, clinicians, researchers or anyone affected by sarcoma is invaluable. This impact report for the 2018-19 year showcases the difference we’re making at Sarcoma UK through the research we fund, our policy work, our information respurces and the support we offer.