People affected by sarcoma need timely, appropriate mental health support throughout diagnosis, treatment and beyond.
People affected by sarcoma and their loved ones can face enormous emotional strain due to the rarity, unpredictability and severity of the disease. However, many people do not receive the psychological and emotional support they need.
Why this needs to change
- 90% of respondents to the National Sarcoma Survey 2025 said their diagnosis and treatment had negatively affected their mental health or emotional wellbeing.
- Nearly one in three patients (32%) said they would have liked more emotional support from hospital staff during their treatment.
- Only 20% of respondents were referred to emotional support, such as counselling, as part of rehabilitation after treatment.
- Anxiety continues to affect people after treatment. Almost half of patients (48%) said anxiety affected their day-to-day life, while 64% said their biggest worry after finishing treatment was their cancer coming back.
- Carers and family members are also significantly affected. More than a quarter (29%) provided over 50 hours of care and support each week. 20% said caring meant they were no longer able to work or continue education, while a further 62% said it had a temporary impact.
- People affected by sarcoma can face a unique combination of emotional pressures. The State of the Nation review highlighted the rarity of the disease, feelings of isolation, changes to appearance or physical function following treatment, and the impact on work, family life and finances.
- Mental health support is not always accessible or appropriate. The State of the Nation review found that support can be difficult to access, arrive too late or be too general to address the specific experiences of people affected by sarcoma
What we want to see change
The unique and significant mental health needs of people affected by sarcoma must be recognised and addressed as an integral part of their care.
1. Improve access to effective mental health support
By the end of 2027, the UK Government and Devolved Administrations should report against their commitments to provide effective mental health support for people with cancer.
They should work with commissioners and health providers to develop action plans to improve how this support is delivered.
2. Make mental health part of ongoing sarcoma care
Sarcoma Advisory Groups and devolved Cancer Networks should ensure that everyone with sarcoma receives a periodic holistic needs assessment so their care plan reflects their changing needs.
3. Provide access to specialist mental health support
People with sarcoma should have access to a cancer-specific mental health professional as an extended member of their sarcoma multidisciplinary team (MDT).
