Improving Outcomes for Children & Young People with Cancer Louise Hooker National Cancer Action Team Cancer Action Team Cancer Services for Young People

What does the CYP IOG say? “An appropriate balance of service provision and allocation of resource” “Safe and effective services as locally as possible, not local services as safely as possible”  Clear organisational structures, Network Leads  Establish Principal Treatment Centres (PTCs) and referral pathways  PTCs to provide sustainable range of services, defined staffing  Shared care, with defined areas of responsibility agreed with PTC  Care delivered by Multidisciplinary Teams  All care under 19yrs in age-appropriate facilities, 19yrs and over must have unhindered access as required  All patients must have access to tumour-specific expertise  Access to clinical trials, or treatment on agreed protocols  Registration of cancers in year olds

‘Nine Commandments’  All yrs inclusive to be treated at a PTC (young people)  All yrs inclusive to be offered treatment at a PTC (young people)  All yrs inclusive must be discussed at a site–specific MDT and a TYA MDT  Systems of referral/notification between providers must not introduce delays for urgent cancer treatment  There must be identified a lead medical clinician for each patient, with overall responsibility for their treatment  Shared care not precluded in delivering CYPIOG–compliant services. All shared care arrangements must be a partnership with PTC, and agreed by commissioners.  TYA MDT at PTC has care coordinating function across services  Core services of a single PTC services may be in more than one hospital/Trust but must be within one city  Robust arrangements for transition between age-defined services must be developed.

Principal Treatment Centres  PTCs require co-location of MDTs/services for most common TYA cancers and local access to other MDTs  Ideally all relevant teams and services on one site – if not possible, must be in one city  Age range to dovetail with PTC (children)  Safeguarding for vulnerable children and young people  Age-appropriate facilities, not with children or older adults  Oncology/haematology-skilled workforce and co-located ITU for age group - in order to provide complex/high risk treatment and care  Close collaboration with other adult cancer service providers, and children’s PTC  All young people to have unhindered access to treatment and care at PTC  Informed choice of place of treatment for young adults aged 19yrs and over - PTC (YP) or adult services more locally  Agreed referral and treatment pathways

Multidisciplinary Teams  Core TYA MDT composed of site-specific experts and TYA experts – ‘TYA lead’ medical members from key site-specific MDTs  All patients discussed at full site-specific MDT and TYA MDT  Site-specific team direct and advise on diagnosis and treatment  Site-specific MDT’s diagnosis and treatment plan to be reviewed/discussed with TYA team, agreed by both teams  Agreed TYA treatment/care pathways for each cancer type across providers  Agree/record ‘consultant in charge’ for each patient  TYA MDT co-ordinate MDT review, notification to national TYA registers, and agreed treatment plans for each patient  TYA MDT coordinate shared care with PTC and access to psychosocial care and peer support across service providers  Agreed referral pathways and rapid notification between teams to avoid system-initiated diagnostic/treatment delays  Links between diagnostic/treatment and psychosocial MDTs in planning treatment/care

Shared Care  PTC age range may cross child and adult services age ranges  Shared care levels as per children’s services for practicality and safety  Young adults 19yrs and over may choose to have all treatment in ‘approved’ adult services termed ‘TYA Network Care’ (included in level 3 shared care) - patients notified to PTC and collaboration is between local MDT and PTC TYA MDT (access to PTC site-specific TYA leads).  Informed choice of place of treatment/care is crucial – information must be balanced, evidence-based and choices respected.  Treatment/care to Network’s agreed trials, protocols and pathways - regardless of place of care.  All young people to have access to age appropriate care/support as required – TYA outreach support services from PTC.  Age appropriate facilities in local adult cancer services a challenge – all under 19’s are encompassed by NSF for children and young people – this will also benefit those 19yrs and over.