G199(P) Audit of information provided to parents of children with epilepsy

Abstract

Introduction Epilepsy is common in children. Diagnosis may impact negatively on the family. Witnessing a seizure can be very frightening. A wide range of emotions and reactions from the parents are reported once the diagnosis is made. High quality information for the family provided on time can be very beneficial. Involving the child and family in decision making is associated with good outcome and improve compliance. Aim There are risks associated with epilepsy. Many professionals pay attention to medical management (medication) once a diagnosis is made. However, needs of the child and family for high quality information is ignored. NICE guideline has highlighted what information needs to be provided to the family and what safety measures to be taken. As with no epilepsy clinic locally, I performed an audit to look into our practice and to check it against the standards set by the NICE and National service framework for long term conditions in order to improve the service delivery to children with epilepsy. Method A questionnaire was developed using CG137epilepsy NICE guideline. Patients with epilepsy who were seen over the period of January–May 2014 were selected to receive the questionnaires that included parents feeling once the diagnosis is made. Patients were seen both in hospital and community settings. Results 40 received the questionnaires, 34 returned (85%). Most (30/34) were younger than 10 years at the time of diagnosis. Co-morbidities were seen in 62% including cerebral palsy, learning difficulty, autism, ADHD and some had combinations. The high number relates to seeing more children in special schools over the period of the audit. 18/40 reported significant emotional problems at diagnosis: sad, terrified, devastated and shocked. Information on lifestyle including water safety was provided to 25/34 (70%). Information on SUDEP was not provided to 23/34 (68%). Conclusion There is a wide variation in practice within the Department. There is no epilepsy clinic with no epilepsy nurse. The information provided to patients was very patchy, too little or given too late. Action Proforma was put in place, covered classification as per Multi-axial diagnostic scheme: Description of seizures, Seizure type, Syndrome, Aetiology and Co-morbidity. Referral letter is sent to the community nursing team for early home visit and an early liaison with school to improve outcome. Group training for the parents was commenced.