NICE Guidance – Service delivery for patients with Sarcomas What are the key points? National Institute of Clinical Excellence

What is NICE? How will the guidance work NICE is a government body that determines the scientific and economic case for adopting a new therapy (it’s called rationing) It is also involved in preparation and dissemination of guidelines Service delivery is peer-reviewed so standards will generally be adhered to

Background – current sarcoma care in UK Late diagnosis (average size =10cm) Uncertainty where to send patients Lot of centres treating few patients Variable adherence to protocols Variable treatment quality

Patients want to be more involved… Identifiable keyworker More information Pre- referral (who they will see, tests, times etc) At referral – written information to take away Post referral – to be able to mull over things

Diagnostic pathway Streamlined Diagnostic centres – managed by networks in conjunction with comprehensive treatment centres - lot of options available All biopsies seen by experienced pathologist Early radiology review for ‘suspicious’ bones

Pathology Ideally no pathologist in isolation Quality approved (system already in place) Formal links with others Training needs National tissue resource

Multidisciplinary Team (MDT) All sarcoma patients must be managed by a MDT Minimum workload 100 new STS / yr, 50 new primary bone (or 100 bone) Why ? Critical mass needed for experience

Core members 2 of everything (Surg/path/radiol/oncol) Keyworker MDT co-ordinator + secretary

Extended members Paediatric Oncology Plastics / Chest / GI / ENT Physiotherapy Palliative care

Process Meet weekly Discuss and document all new cases Diagnostic + treatment facilities Data / Trials / Audit (national) /Information etc

Who can give CT + RT? Nominated units Participate in trials Age related facilities Experience with sarcomas

Rehab + Follow up Involve patients Keyworker responsible for liasing

Audit etc National audit (? Amp rate, LR rate etc) Minimum data set mandatory Research incl tissue storage essential Training for all needed

Advantages Clear patient pathway Treated by experienced MDT Data collection and audit Research Better outcomes?

Summary Rapid referral to diagnostic centre and on to treatment centre Treatment centres agree and adhere to protocols, trials etc Less people treat more patients ? Improved outcomes !