Children and Young People Improving Outcomes Guidance

1. Children and Young People Improving Outcomes Guidance • Key aims of guidance and age specific requirements • Designation of Principal Treatment Centres • Development and designation of Shared Care • Timeframe for delivery • Challenges and opportunities

2. Key aims of CYP IOG and age specific requirements • “Age appropriate, safe and effective services as locally as possible, not local services as safely as possible” • All children and young people under 19 yrs oldmust be referred for definitive diagnosis and treatment in age appropriate facilities in the PTC • Young People between 19-24 should have unhindered access to age appropriate facilities and support when needed. They can choose to receive treatment at a PTC, locally, or a combination of both through shared care. (dependant on tumour and treatment)

3. Configuration, co-ordination and care • SCG required to designate PTCs identified for Children and Teenagers and Young Adults to provide sustainable services with facilities and workforce • Children’s Cancer Measures (2009) require Children’s Cancer Network Co-ordinating Group (HYCCN & YCN) responsible for ensuring delivery, leadership and co-ordination • Clear governance and leadership: Clinical leadership of PTC with agreed protocols and agreed areas of responsibility • Co-ordinated pathway of care delivered by MDTs, providing information and support for patients and carers • All patients must have access to tumour-specific expertise, access to clinical trials, or treatment on agreed protocols • Registration of cancers in 15-24 year olds

4. Shared care • SCG designate Shared Care Units, with Cancer Commissioners and Networks. Commissioners should ensure that shared care arrangements are established which • have approved clinical protocols for treatment and care • define areas of responsibility with the PTC • identify a lead clinician and a lead nurse • Shared Care for children aged 0-16: nationally agreed levels of care, levels 1 – 3; • In HYCCN & YCN : Hull and Scarborough, Airedale, C&H & York - all Level 1, apart from Hull Level 2

5. Shared Care components • Coordinated care supported by appropriate structures, processes • Named lead consultants, nurse, pharmacist in PTC and at local level • Robust 2-way systems of communication • Age appropriate environments • Written guidelines to support the level of care agreed • Education and training programmes for staff in all settings • Arrangements for unexpected admissions • Identified contacts for families • Identified funding

6. Shared Care components Shared Care for TYA: • PTC need to work with both child and adult services for shared care • 3 shared care levels defined as per children’s services - practicality and safety • Need to develop a ‘Network care’ service model in collaboration with Trusts who provide cancer services for adults • Require prompt referral and response to ensure informed choice for all 19-24 yr olds and that treatment is not delayed

7. Timeframe • For full implementation by Dec 2010 • 0-16: PTC and Shared Care Units designated, MDT in place, pathways agreed. Formal agreements to be completed by Dec 2010 • TYA: PTC designated, MDT in place, pathways agreed. Formal agreements to be completed by Dec 2010

8. Challenges and opportunities • For Commissioners: to ensure effective and safe provision of shared care services for Children and TYA • For PTC: Children’s measures require formalising protocols, MDT and shared care • For Shared Care Units: Children’s measures require shared Care Units to formalise arrangements, ensure cover, safe facilities and services, monthly MDT • Aiming for Peer Review 2011/12