Getting the right support at the right times can make a world of difference to those living with sarcoma and their carers.
Why is support important?
- The National Sarcoma Survey 2020 shows that almost all (90%) of sarcoma patients said that their diagnosis or treatment had a negative impact on their mental health or wellbeing.
- In England, the National Cancer Patient Experience Survey questions tens of thousands of patients across all cancer types to monitor experience of cancer care. Consistently over the last seven years, patients with sarcoma have generally reported poorer care experience than those with other diagnoses.
- Counselling and support groups can provide patients with someone to talk to from outside their support network.
- Similarly, support groups allows patients to discuss their concerns and feelings with people who have been through a similar experience; this importantly tries to prevent the rarity of sarcoma making patients feel they are alone. However, only 28% of patients were told about their local sarcoma-specific peer support group.
- Getting the right information at the right time can make a big difference to mental health. It can help people who have been diagnosed with sarcoma to make better informed decisions about their treatment, prepare better for treatment, and help them cope with their mental wellbeing at such a difficult time.
- Having access to the right support can allow patients to better understand sarcoma and ask the right questions for them; this can benefit both their own and their family’s quality of life. Despite this, 45% of patients said they were not given enough information at diagnosis.
- The psychological needs of patients and their support networks need to be proactively addressed by specialist sarcoma centres.
“The physical care which I received was brilliant but I felt left on my own to deal with the mental side of my diagnosis.”
Susan Mutch, Sarcoma UK supporter