부산대학교 도서관

IntroductionInternational consensus-based care recommendations for Myotonic Dystrophy Type 1 (DM1) have been published recently. Audit of the DM1 service at the Manchester Centre for Clinical Neurosciences (MCCN) against these was presented at the 2019 ABN. Significant scope for improve- ment was identified.MethodsAs part of DM1 service redesign at MCCN an engagement event was organised. Opinions of patients, carers and relatives on service provision and areas for improvement were explored. With reference to published care recommendations, attendees participated in structured small group discus- sions. Responses were recorded by a facilitator and thematic analysis performed.ResultsIn total, 69 service-users attended. Themes emerging included a perceived lack of support between consultant appointments, inadequate access to specialist therapy services, a lack of awareness of available support services, and an inadequate understanding of DM1 by healthcare professionals. Suggestions for improvement included setting up joint appointments and patient forums for group discus- sion, increased use of telephone/online appointments, and setup of a more responsive service facilitated by a specialist nurse.ConclusionThese findings have been incorporated in to the DM1 service redesign programme at MCCN, which has included the recent appointment of a neuromuscular specialist nurse. Re-audit of the service is planned.james.dent@doctors.org.uk