Bristol Royal Hospital for Children

In the Southwest, Bristol and Plymouth are two hubs of the South West Neuromuscular Operational Delivery Network (SWNODN) which provides care to over 6000 adults and children with various neuromuscular conditions. We are currently looking after people with 80 neuromuscular conditions within the network via multi-disciplinary outreach clinics. We collectively look after over a 100 boys and young men with DMD. The clinical service, which is well established and funded by NHS England, is currently highly regarded and seen as a gold standard for clinical networks within the neurology and neuromuscular community. In 2017, the SWNODN was formally recognised by Muscular Dystrophy charity, MDUK, as a Centre of Excellence for Neuromuscular conditions. 

This recognition was achievable by means of a number of quality improvement activities, including guidelines, SOPs, audits about bone health and parent reported outcome measures, and feedback from parents/families questionnaire about our services. We have also established workshops and muscle cafes as a forum to provide specific information about coping, psychological support and opportunity for social networking. We have now established a specific South West DMD database to facilitate research.