GP296 Epilepsy &us – giving a real voice to children, young people and families as part of a national audit programme. (June 2019)

• Record Type: Journal Article
• Authors: Down, Calvin; Sparrow, Emma; Dunkley, Colin
• Is Part Of: Archives of disease in childhood. Volume 104:(2019)Supplement 3
• Page Start: A154
• Page End: A155
• Publication Date: 2019-06
• Subjects: Children -- Diseases -- Periodicals; Infants -- Diseases -- Periodicals; 618.920005
• DOI: 10.1136/archdischild-2019-epa.355
• Languages: English
• ISSNs: 0003-9888

Abstract

Abstract : Epilepsy12 was established in 2009 with the aim of helping epilepsy services to measure and improve care for children and young people with seizures and epilepsies across England and Wales. Epilepsy12 is delivered by the Royal College of Paediatrics and Child Health. For Round 2 of the audit, children and young people with epilepsy, and their parents/carers, were invited to complete a Patient Reported Experience Measure (PREM ) questionnaire on their experiences of care from their epilepsy service over the previous year. 2, 335 questionnaires were returned. Some findings were: 88% were satisfied with overall care from their epilepsy service 20% of parents/carers said staff were not good at working together or with others e.g. GP, school/nursery 37% said the information they were given was hard to understand The team reflected on the Round 2 PREM and worked with the RCPCH Children and Young People's Engagement Team on an Engagement Plan for round 3. Between April and June 2018, 130 children and family members took part in 'clinic chats' and gave their views on 'service contactability' and family mental health. 10 hospitals were visited and two family days held. Children as young as 3 contributed. Reports from clinic chats were reviewed by Epilepsy12 youth advocates who identified top priorities via thematic analysis as follows: Schools (support, good care plans, awareness, training, visits from nurses) Support for worries and anxieties (Why me? transition, mental health, messages of hope and coping strategies) Face to face support (value of group work/support groups, engagement sessions, parent/carer groups, young people groups, more time with health workers) Positive adult relationships (school, clinicians, specialist nurses, family, support workers) More services (mental health and wellbeing, weekends/evening non-emergency support, home visits, support groups) Practical help (lifestyle tips, family-based training, coping mechanisms, products to explain epilepsy to children) Emerging topics (employment, independence) Sibling carers aged 3 – 11 also contributed views and created Epilepsy Superheroes who could be on hand with super powers if someone had a seizure. Two of the youth advocates delivered a 75-minute session on the clinic chat themes at the Epilepsy12 National Conference in June 2018 to over 160 paediatric epilepsy specialists. This CYP-led session received overwhelmingly positive support from attendees. Youth Advocates are now developing a quality improvement project relating to support for anxieties and worries and will report on it at the 2019 Epilepsy12 National Conference.