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.

Paediatric Neurology

Facilities we currently have within the department include:

• 2 dedicated research beds including overnight stays
• Suitable corridor for 6 min walk test,
• 3 physios [2 paediatric and one adult] trained in outcome measures and experienced with DMD patients
• Support from research teams [nurses/managers]
• Muscle Biopsy facilities
• Muscle MRI facilities
• Cardiac ECG, ECHO, MRI
• Research Imaging facility (CRIC) for low risk trial recruits not requiring general anaesthesia for MRI scans and with good respiratory function.
• Neuropathology Laboratory

Both of the Neuromuscular Paediatric Physiotherapists on our team are on the Neuromuscular Committee of the Association of Paediatric Chartered Physiotherapists [APCP] and have co-authored a guidance document on Physiotherapy in neuromuscular conditions produced for the APCP. Our adult Neuromuscular Physiotherapist also contributed to the adult physiotherapy e-learning module.

Other relevant projects

All of our Neuromuscular Physiotherapists are active members of the North Star network physiotherapy group and our paediatric physiotherapists contribute data to the North Star and SMArt net/SMA REACH networks

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