The National Sarcoma Survey 2025 is the largest survey of people affected by sarcoma in the UK. Every five years, Sarcoma UK collects vital data to better understand the realities of sarcoma care, including diagnosis delays, treatment experiences, emotional support, rehabilitation and access to research.
This year’s results are clear. While some things have improved, many of the biggest challenges remain: people are still waiting too long for a diagnosis, struggling to access the right emotional and mental health support, and missing out on opportunities to take part in research and clinical trials.
Key findings from the 2025 survey
The results of the National Sarcoma Survey 2025 reflect the experiences of patients, carers and families from across the UK. Here are some of the most important things we heard:
Diagnosis delays are still far too common:
- 30% of patients waited more than six months for a diagnosis
- 17% waited more than a year
- Many had to visit their GP or another healthcare professional multiple times before being referred
Misdiagnosis is still happening:
- 1 in 5 patients were initially treated for the wrong condition
- Women and younger people were more likely to be misdiagnosed
Mental health support is lacking:
- 90% said their mental health was negatively affected by sarcoma
- Only 1 in 5 accessed emotional support during or after treatment
- Patients reported high levels of anxiety, fatigue and ongoing fear of recurrence
Carers and families are under pressure:
- 1 in 4 carers spent more than 50 hours a week providing support
- 95% said their mental health had been affected
- Many reported financial stress, emotional burnout and disruption to work or education
Fewer patients are being invited to clinical trials:
- Just 10% of adults were invited to take part in a clinical trial
- This is a sharp drop from 21% in 2020
- Genomic testing is not being offered consistently, despite NHS England’s universal offer policy
There are signs of progress
Despite these challenges, the 2025 survey also shows that progress is possible:
- Awareness of sarcoma is growing
- More people report receiving care from a specialist sarcoma team
- There have been modest improvements in communication, care planning and patient information
- More detailed data has been collected this year on things like ethnicity, location, first language and existing health conditions – helping us better understand inequality in sarcoma care
What Sarcoma UK is doing next
We are using the 2025 survey findings to push for real change. This includes:
- Campaigning for earlier diagnosis through our Expert Steering Group
- Working with NHS and policy leaders across all four nations of the UK
- Funding sarcoma research and supporting the development of new treatments
- Backing legislation like the Rare Cancers Bill to improve trial access
- Running our support line and services to provide emotional and practical help
- Fighting for fair access to genomic testing, rehabilitation and emotional support
