Comprehensive Cancer Survivorship Care Model in Southwest UK

1. National Cancer Survivorship Initiative - Models of Care The South West Regional CYP Oncology Shared Care Network

2. Partner Organisations • Bristol Royal Hospital For Children • University Hospitals Bristol NHS Foundation Trust • Avon Somerset and Wiltshire Cancer Services Network • Peninsula Cancer Network • South West Specialist Commissioning • South West Cancer Hub • South West Children’s Cancer Research Registry

3. Bristol to: Manchester 168 miles London 119 miles Lands End 195 miles Truro 163 miles Plymouth 116 miles

4. ‘Safe care as locally as possible …’

5. Aims • Explore models of follow up shared with secondary care • Project will include: • continuity of care • transition to adult services • individual care planning

6. Scope of testing – phase 1 • Define population at risk – who needs the service? • Service mapping – what is currently being provided and who is providing it? • Assessing patient attitudes to follow up – what do patients want? • Assessing professional attitudes to follow up – what do professionals think patients want? • Gap analysis – who is actually available to contribute to the service and what resources are missing

7. Phase 1 – work packages • WP 1 – Population • Identify survivors • Map locations to possible hubs • WP 2 – Focus groups • Evaluate survivors current experiences and evaluations to FU • 3 groups – Exeter, Plymouth, Truro • Psychologist led • WP 3 – Questionnaires and tools • Delphi process – professionals attitudes • Questionnaire – involvement of professionals in peninsula • Identify evaluation tools • Discuss project with LREC • WP 4 – Service mapping • Available resources • Gap analysis • Inspire and motivate others • WP 5 – Service design and work force planning • Appoint project manager • Appoint and train CNS • Design service • Develop late effects MDT • WP 6 – Dissemination • Promote model to users and professionals • Share and publish findings • WP 7 – Database • WP 8 – Pilot (phase 2) • WP 9 – Evaluation (phase 2)

8. End of phase 1 • Define the optimal service model based on patient and professional expectation and available resources Phase 2 – implementation and testing

9. Phase 2 • Negotiate resources to deliver model as agreed • Pilot model • Evaluate model • Adjust and implement final model of care

10. Phase 2 – testing of model Hypothesis ‘ EFFECTIVE long term follow up can be delivered with high levels of SATISFACTION in a shared care setting under the guidance of the principal treatment centre and the support of staff with specialist knowledge’

11. Phase 2 - testing • Effectiveness • Attendance and DNA rates • Audit of treatment summary availability and risk profile • Audit of provision of relevant information to patient / GP / other relevant health workers • Evidence of negotiated plan of follow up • Change in patient’s knowledge and attitude to follow up • Improved HRQL – SF12

12. Phase 2 testing • Satisfaction • Consultation satisfaction – PMH tool • Assessment of satisfaction with other aspects of process using self designed criteria measured on Likert scales • Evidence of spontaneous positive and negative feed back received

13. Progress so far • Steering group convened • Project Manager appointed • Youth support worker and psychologist recruited to run focus groups • Care plan and long-term follow up module almost complete