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

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

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

‘Safe care as locally as possible …’

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

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

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)

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

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

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’

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

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

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