Context There is unacceptable national variation in quality of care for children and young people (CYP) with Epilepsy.1 The number of children attending A&E has risen year on year.2 This likely represents misuse/inappropriate use of acute services with significant impact on the healthcare system, the CYP and their families. Anecdotal evidence from a London district general hospital suggested that a number of CYP with Epilepsy not needing emergency management presented to A&E.
Problem National level CYP with Epilepsy data demonstrating unwarranted variation in healthcare, coupled with local, physician perceived inappropriate attendance to A&E. The project aims were: to collect objective A&E attendance data for CYP with Epilepsy, to explore local care deficits and design solutions to perceived care deficits.
Assessment of problem and analysis of its causes A retrospective audit of A&E attendance was conducted. A paediatric registrar reviewed clinical notes for all CYP with Epilepsy attending A&E over 6 months (‘known Epileptics’ aged 0–18 years presenting with seizure (s) per A&E activity data), rating the acuity of the presenting complaint. The data suggested 49% of A&E attendances for CYP with Epilepsy may have been avoidable (Table 1).
Intervention To further explore this problem and address the delivery of appropriate, high quality care for CYP with Epilepsy, we involved them, their parents/carers and relevant healthcare professionals in designing health system improvements.
Study design A Paediatric Epilepsy Co-design Event allowed patients and their carers to work in partnership with healthcare staff. 59 individuals (including young people with Epilepsy, their parents, community and hospital nurses, community and general consultant paediatricians, GPs, hospital pharmacists, a neurophysiologist, hospital management, clinical directors, commissioning groups and junior doctors) attended the event at a local primary care centre.
The 2.5 h programme had attendees divided equally into 3 groups. An Epilepsy charity facilitated group discussions using the methodology of exploring barriers, enablers and solutions3. Thereafter a feedback session relayed the key points identified to the wider group.
Strategy for change Four key improvement areas were identified within health service delivery for CYP with Epilepsy: communication, support and access, education and information and transitioning to adult services. Participants suggested six service interventions:
a key worker e.g. a paediatric Epilepsy nurse specialist for continuity of care and improved communication and advocacy for CYP with Epilepsy;
a support group for CYP and parents;
updated information technology for communication between parents, primary and secondary care;
Epilepsy information packs for parents, CYP and local schools;
Epilepsy teaching sessions for students and healthcare professionals delivered by Paediatric Consultant (s);
Young persons with Epilepsy to be included early in treatment plan development, focussing on the transition pathway ensuring planned handovers to the Adult Service.
Measurement of improvement The service interventions above are being presented to local clinical commissioners. The interventions’ success could be measured through re-audit and a follow-up event.
Effects of changes This cannot be fully evaluated yet, but the findings provided objective evidence of inappropriate, potentially avoidable A&E attendances. This venture also provided a forum for stakeholders to work together to identify needed improvements to the Paediatric Epilepsy Service.
Lessons learnt Almost half of all A&E attendances for CYP with Epilepsy may be avoidable. Objective evidence is powerful in driving health service change. Incorporating all stakeholders –particularly service users – is of key importance in planning and running successful services.
Message for others Working Audit with co-design has proved to be an invaluable combination, allowing in depth review of the problem using quantitative and qualitative approaches. Working jointly in this co-design event, allowed experienced healthcare professionals and service users to identify jointly factors that could improve Paediatric Epilepsy services. This approach to healthcare quality improvement should be replicated across other settings.