The National Sarcoma Survey 2015 Cancer 52 All members meeting Tuesday 5th July 2016 Clare Soares Lindsey Bennister

Contents General information Diagnosis Treatment Post-treatment Next steps

Sarcoma UK Quality Health Expert panel of Patients and Clinicians 650 respondents (64%) England – Previously completed Cancer Patient Experience Survey Scotland – Self selected

Transforming patient experience

Patient experiences of Diagnostic Pathways in Sarcoma What were the main symptoms that first made you think something was wrong? How long was it from the time you noticed these symptoms and first seeing a GP? If you went to see a GP about your symptoms, what did the GP do?

2. How long was it from the time you noticed these symptoms and first seeing a GP? 18% of all sarcoma patients presented 6 months or later. 24% of bone sarcoma patients presented 6 months or later (including 17% who waited more than a year). 16% of soft tissue sarcoma patients presented 6 months or later.

3. If you went to see a GP about your symptoms, what did the GP do? 34% were referred for tests/x-rays/scans 33% were referred to a specialist 5% were sent straight to hospital the same day There was no difference between bone & soft tissue sarcoma patients. = GP took action in 70% of cases

Patient experiences of Treatment for Sarcoma Were you treated by a Specialist Sarcoma Cancer team? Was there always a Clinical Nurse Specialist in chare of your care? How many hospitals did you have to attend for treatment?

4. Were you treated by a Specialist Sarcoma Cancer team? 3% Were not treated by a Specialist sarcoma cancer team 87% Treated by a Specialist sarcoma cancer team 10% Not sure if they were or not

1 in 10 did not have access to a CNS

6. How many hospitals did you have to attend for treatment 34% Attended one hospital 45% Attended two hospitals 21% Attended three or more hospitals Did you mind travelling the distance you had to travel? 90% - NO

Patient experiences of Treatment for Sarcoma Three important findings: Clinical trials Sides effects Written treatment plan

Overall only 22% of those asked went on to take part in a trail Clinical Trials 67% NOT asked if they wanted to take part in a clinical trail 32% were asked (28% asked to take part at the hospital where they were being treated, 4% asked to take part at another hospital) Overall only 22% of those asked went on to take part in a trail Younger people more likely to be asked to participate than older patients Scotland patients less likely to be asked compared to England

Written Treatment Plan 87% Were given enough information to help them make decisions about their care and treatment However about 4 in 10 patients were not given a written treatment plan “I would have liked clearer communication about my treatment plan, and once treatment has finished, clear information about follow up “

Patient experiences of Rehabilitation and Support At the end of treatment, were you referred to any of the following rehabilitation services? When treatment finished, what were you most worried about?

Did rehabilitation services help? 63% Bone 48% Soft tissue

Summary First survey of it’s kind conducted by Sarcoma UK Six areas for improving patient experience: Early suspicion of Sarcoma Streamlined routes into sarcoma specialist services Clear navigation within sarcoma specialist services Emotional support Access to specialist sarcoma rehabilitation services Information about Clinical trials

Sarcoma UK activities 2016 – Snapshot Sarcoma awareness week 4th July – 53% of the public have not heard of Sarcoma. Daily Mirror website of the week CE on London Live “What is Sarcoma” Social media campaign “Sarcoma and you” Online photo exhibition GP and clinicians: Golf ball campaign, BMJ module, Conference and journal abstracts and papers Patient support groups, Support line, Information booklets, Actively involved in health professional groups Fund research

Thank you clare.soares@sarcoma.org.uk