G173(P) Defining care standards to help improve epilepsy care for children and young people. (May 2019)

• Record Type: Journal Article
• Authors: Bali, A; Nelson, S
• Is Part Of: Archives of disease in childhood. Volume 104:Supplement 2(2019)
• Page Start: A70
• Page End: A71
• Publication Date: 2019-05
• Subjects: Infants -- Diseases -- Periodicals; Newborn infants -- Diseases -- Periodicals; Fetus -- Diseases -- Periodicals; 618.920105
• DOI: 10.1136/archdischild-2019-rcpch.168
• Languages: English
• ISSNs: 1359-2998

Abstract

Abstract : Aims: Epilepsy affects approximately 2000 (1%) children, young people and families (CYPF) in our city, a major conurbation. There are inherent difficulties in providing care: heterogeneity, complexity (high rate of co-morbidities) and a broad impact beyond healthcare (e.g. learning/behavioural difficulties). Outcomes are sub-optimal, with issues including misdiagnosis, unwarranted variation and fragmented care. Care standards have been developed regionally for CYPF in other conditions/areas and, via peer review, audit and benchmarking, have proved a useful tool to improve care; however, similar epilepsy standards have not yet been developed. Equally, no existing guidance translates already-identified solutions for epilepsy service design (e.g. better communication, person-centred approach and integrated working across sectors providing care). We aimed to produce a clear, practical, holistic set of standards to promote better epilepsy care for CYPF across our city. Methods: Experienced professionals (12 in total) from across primary, secondary and tertiary healthcare were brought together with other professionals (e.g. mental health and third sector). This group identified existing standards (e.g. NICE, ILAE), the relevant evidence base, and other important guidance and legislation. The group met multiple times to draft standards (e.g. creating unified statements, categorising into practically useful groups, defining measurement criteria for compliance purposes). All original sources were referenced. Chapters complementing each category were written to give broader context. The document was circulated for review amongst relevant stakeholders, including healthcare providers, CCGs, local authorities, schools and charities. Results: 105 standard statements were written, covering the categories of: primary/secondary/tertiary care, care planning, holistic care, support/information, workforce/education/training, pregnancy, learning disabilities, transition, and service planning/commissioning. These statements were combined with a 'Guide to holistic, integrated epilepsy care' (8 chapters) to make an overall document, published online as an interactive PDF. Conclusion: These innovative care standards outline professionals' roles and responsibilities, and define a 'good' epilepsy service. By combining minimum expected standards alongside aspirational goals for optimal care, commissioners and providers can validate/improve epilepsy services. Importantly, the standards encourage integration across health, educational, social care and voluntary sectors, and prompt professionals to work in partnership with CYPF, leading to a truly holistic, person-centred approach.