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 milesLondon 119 milesLands End 195 milesTruro 163 milesPlymouth 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