G188(P) Striving to improve carer trust in our local paediatric epilepsy service; rescue medication and BLS workshops for parents and carers of children with epilepsy; care above and beyond routine. (May 2019)

• Record Type: Journal Article
• Authors: Gandhi, V; Lockitt, L; Kaptanoglu, L; Stevens, L; Archer, S
• Is Part Of: Archives of disease in childhood. Volume 104:(2019)Supplement 2
• Page Start: A76
• Page End: A76
• Publication Date: 2019-05
• Subjects: Children -- Diseases -- Periodicals; Infants -- Diseases -- Periodicals; 618.920005
• DOI: 10.1136/archdischild-2019-rcpch.183
• Languages: English
• ISSNs: 0003-9888

Abstract

Abstract : Luton has high A and E emergency attendances with seizures and is an negative outlier in England. The management of epilepsy in children and young people can vary in the community in our experience. We as a team strive to improve trust from our patients. More information on patient safety is one of our focuses. We decided that repeated refresher training for carers would be an area that would support carers. As a significant number of our patients are referred from outside Luton and South Bedfordshire, they do not have access to an epilepsy specialist nurse and therefore no specialist epilepsy nursing support in the community. We have been providing carers of children and young people, prescribed rescue mediation for prolonged seizures the opportunity to revise their skills in administering rescue medication, allowing parents and carers an opportunity to meet other families of children with seizures. The service has been well received with approximately 20–30 adults and one young person in attendance at each session. The sessions have been delivered over a two hour period in evenings and at weekends and have been supported by healthcare assistants, student nurses and doctors, advanced nurse practitioner, senior nursing staff from the hospital, a paediatric epilepsy nurse and consultant paediatrician with a special interest in epilepsy. We present our unit's experience with attendees' feedback on qualitative survey. Feedback from every session has demonstrated that families feel that we care and understand about their worries as carers of children and young people with prolonged seizures. The families have found this to be a positive experience and have had the opportunity to network with other families in the same situation. We are hoping to extend workshops to young persons as we have found that siblings are often the ones who are present during these prolonged seizures and want to be empowered with the knowledge to support their sibling. A pharmaceutical company has developed a training pack to support the workshop. We would recommend the idea of workshops to help provide support for carers of children with prolonged seizures; this should be separate from epilepsy workshops as this can provide a very strong positive message to families. Acknowledgements: Paediatric Nursing Team, Luton and Dunstable NHS University Hospital. Dr T Rao, Dr A Joshi. Paediatric Epilepsy Team, Luton and Dunstable NHS University Hospital. Mrs Mary Hunt, Cambridge Community Specialist Nursing Team, Luton Training packs provided by Veriton Pharma Videos for workshops provided by ViroPharma and Shire Mrs Tanith Ellis, General Manager Women and Children's Services, Luton and Dunstable NHS University Hospital. Paediatric Outpatient Clinic Staff, Luton and Dunstable NHS University Hospital. Paediatric Playroom Staff, Luton and Dunstable NHS University Hospital. Matron Marva Desir, Paediatric Matron, Luton and Dunstable NHS University Hospital. Support for Workshops provide by Veriton Pharma.