SPROCKET: Systems and Process Redesign and Optimisation at Childhood Key Events and Transitions

VISION: To improve the lives of children with complex health needs, particularly in underserved communities BACKGROUND Children and young people (CYP) with complex health needs face significant challenges accessing the services they need, often spread across many providers. Families describe feeling overwhelmed, vulnerable, isolated, lost in a complex and unfamiliar system and burdened with responsibility. Particularly challenging are times of ‘transition’, such as when seeking a diagnosis, starting or changing school, moving house or transitioning to adult services. Recommendations for research by the National Institute of Clinical Excellence include: understanding the most effective ways to support care; developing ways to bring care closer to home; improving respite care; and addressing commissioning models. SPROCKET will directly address these. A whole systems approach is required where needs span boundaries and gaps between services and organisations. SPROCKET’s system-scale Operational Research approach will provide an appropriate framework in which to design changes that are synergistic, resilient and sustainable. We are an impressive team of UCL researchers, a parent co-applicant, 3 specialist charities, Great Ormond Street Hospital, a health innovation partnership (UCLP) and the North Central London Integrated Care Board. UCLP serves a 5.2M demographically diverse population across London and Essex, including 2 of England’s 10 most deprived boroughs. AIMS & OBJECTIVES SPROCKET will focus on improving services at key transitions for underserved communities. In a multi-disciplinary effort across academia, CYP and families, councils, schools, charities, health and social care and funding bodies we will - design a better system, improving coordination, delivery and means of measuring and ensuring quality - test new ideas with partner services, capturing generalisable learning DEVELOPMENT PHASE OBJECTIVES & TIMELINE TO LAY GROUNDWORK FOR SPROCKET HUB MONTHS 1-9 Co-define Hub CYP cohort; co-develop how CYP and families are embedded in Hub; expand team across academic, service and PPI partners; identify data sources and develop systems approaches for Hub MONTHS 3-15 Initial systems mapping; develop protocols for quality assurance; identify early service gaps and solutions MONTHS 9-18 Plan Hub ethics and governance applications; plan generalisable learning capture METHODS Within the development phase we will design a Hub with CYP & families at its core through engagement, co-design, analysis and deliberative exercises. We will explore candidate co-design approaches (inclusive workshops, individual sessions, online surveys and interaction) from a user-perspective: at first with our partner charities and parent co-applicant to plan engagement activity in summer 2023; then with CYP and families to design our engagement processes in the full Hub, including selecting methods for eliciting perspectives from CYP and families on what ideal services would deliver. In parallel, we will select methods for eliciting corresponding perspectives from staff, service leads and commissioners. IMPACT SPROCKET aims to transform services for CYP with complex health needs so as to improve their lives and the coordination and efficiency of services. Our development phase programme will enable SPROCKET to find sustainable and resilient system solutions designed with and for CYP and families, unlocking the potential to deliver significant benefit.