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

2. Contents General information Diagnosis Treatment Post-treatment
Next steps

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

4. Transforming patient experience

5. 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?

7. 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.

8. 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

9. 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?

10. 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

11. 1 in 10 did not have access to a CNS

12. 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

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

14. 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

16. 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 “

17. 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?

18. Did rehabilitation services help?
63% Bone % Soft tissue

20. 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

21. 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

22. Thank you