Abstracts

Rationale: To examine the experience of parents with children undergoing Vagus Nerve Stimulation (VNS) therapy following changes made to service delivery as a result of informal feedback from parents dissatisfied with aspects of clinical coordination/continuity of care. Methods: To improve the patient experience changes were introduced, namely: a patient pathway algorithm; patient information leaflet; teaching package for clinical staff and extending the role of the specialist nurse to include responsibility for managing admission, discharge and follow up outpatient care. Parents of twenty six children (12 female), age range 5-17 years (mean age 12.8 years), with drug resistant epilepsy who underwent VNS therapy at Great Ormond Street Hospital during 2008-09 were asked to fill in a questionnaire about their experience of the service. The questionnaire asked about child and family preparation; hospital stay and follow up outpatient care. Results: All parents reported satisfaction with written and verbal information received and with their child s hospital admission, stay and discharge. Twenty two out of 26 parents reported satisfaction with the organisation of outpatient appointments. Four parents reported receiving more than one outpatient appointment letter causing confusion. There was a high degree of satisfaction with quality and continuity of outpatient clinical care with no perceived difference in care when seen by either the consultant paediatric neurologist or the specialist nurse. Written comments from parents highlighted the value parents placed on the role of the specialist nurse in providing clinical continuity through the patient pathway from hospital admission, discharge and follow up outpatient care. Conclusions: Our findings suggest that developing an algorithm, improving written patient information, developing a staff teaching package and extending the role of the specialist nurse in managing the patient pathway can improve parental satisfaction with VNS care.