1413 Healthcare transition for young people across the North-East and North Cumbria: scoping exercise against national standards

Abstract

<h3>Aims</h3> The transition from childhood to adulthood is a time of great change, emotionally and physically and poses specific challenges in young people (YP) with long-term health conditions. Poorly planned transition of care to adult services can be associated with increased morbidity and/or mortality. YP living in poverty are at higher risk of fragmented or failed transition of care. Our aim was to scope the current provision of healthcare transition across the (NENC), identify gaps and develop recommendations to improve transition services. <h3>Methods</h3> An electronic questionnaire using Microsoft Forms Online was developed by the Transitions Leadership Group and piloted. The questionnaire was emailed to all paediatric and adult clinical specialty leads as well as organisational leads across NENC. Data collected included resources available, specialty, clinic organisation and access to education for healthcare team and patients. We also explored involvement of YP in service design, delivery and evaluation and compliance with NICE Transition Guideline NG43 <h3>Results</h3> Response rates were 43% (9/21) for organisational leadership teams (7/8 acute foundation trusts, 1 mental health trust), 43% (44/102) for paediatrics and 33% (36/110) for adult leads across the region. Services were split between secondary (46%) and tertiary care (52%). Responses represented the majority of paediatric and adult sub-specialities services. The majority of trusts (7/8) recognised transition as a priority but only 50% had a trust-wide transition policy and only 3/8 trusts included transition services in their audit cycle. No organisation routinely captured YP experiences of transition. Up to 70% YP have met adult teams before transition and 90% paediatric and 86% adult teams offer YP opportunities to speak to clinicians alone. However only 50% paediatric and 33% of adult teams use of tools to support transition or offer Adolescent and Young Adult (AYA) clinics. Only 30% paediatrics and 50% adult services have key workers. YP were involved in service design and delivery in 90% paediatric and 47% adult services. Careful transition planning and appropriate self-care at patients own pace, good working relationships, joint clinics and early education of parents/carers were identified by clinicians as important enablers of good transition. Clinicians highlighted lack of formal transition, limited resources and funding for joint clinics, and lack of specialist nurse/MDT support as important challenges. Almost all respondents expressed an enthusiasm to link with a regional transition forum. <h3>Conclusion</h3> There is widespread interest amongst healthcare professionals in the provision of high-quality, YP-centred healthcare transition and this survey highlights pockets of good practice. Our data suggest a growing recognition of the need for robust transition services, most organisations are in early stages of embedding the process. Critical gaps identified include limited knowledge of national standards, limited time, and lack of formal processes. No service is fulfilling all quality standards set out by NICE guideline NG43. We recommend development of a regional transition support network to inform an ongoing programme of education and support, recognised and supported by senior leadership teams. Working with YP and parent/carer groups to understand their experience and priorities relating to healthcare transition.