Last year, The National Cancer Patient Experience Survey (NCPES) published a report to drive improvement for cancer patients. Out of this, 2451 sarcoma cancer patients responded - 3% of the total survey response.
We learnt that the explanation of sarcoma is one thing, written information and support is another. The survey showed that only 50% of sarcoma patients were given written, easy understandable information about their diagnosis; this was the lowest of all the other cancer groups.
In 2010, we also carried out our own ‘Information and Support’ survey, to gain feedback from sarcoma patients, carers, partners and family members. From the 107 people that took part; two thirds felt that their support needs had not been fully met.
As the main charity in the UK dealing with all types of sarcoma, we have responded to these research findings, focusing on our Information and Support. Our brand new ‘Understanding sarcoma – a new patient’s guide’ is the core booklet to help patients gain knowledge of this rare cancer and introduce them to the medical team who will look after them. It explains what sarcoma is, how it is diagnosed and the treatment options available. It clearly signposts where you can go for support and has space available to keep your own personal diagnosis information and details of your hospital appointments.
The booklet will be approved by our Information Review Panel, made up of both sarcoma specialist nurses and patients nationally. We will also apply for the Information Standard Accreditation (ISA) quality mark.