Innovative care model for patients with complex muscle diseases.

Abstract

Many neuromuscular disorders require complex multisystem management. This is especially true for the rapidly growing numbers of young adults surviving congenital and childhood onset conditions following improved multidisciplinary care and the routine use of home ventilation. Surveys from the United Kingdom and Netherlands indicate that neuromuscular disorder patients report their services to be at best 'average' and more often 'poor' in quality. Centralization of care to a small number of specialist centres to increase critical mass and thus improve the expertise of clinical teams has been recommended. A recent audit of unplanned hospital admissions for neuromuscular disorder patients has substantiated data from patient surveys. Patients often had no access to a neuromuscular specialist or had fragmented care; 37.5% of 359 unplanned neuromuscular disorder emergency admissions were identified as potentially avoidable. A Neuromuscular Complex Care Centre has recently opened in the United Kingdom to provide holistic patient-centred care in a purpose built adapted environment with high staff to patient ratio. Elective multisystem assessments will be co-ordinated into a 'one stop' admission, bringing the specialists to the patient. The centre will provide first point of contact with 24-h telephone access 7 days a week and will advise and support local hospitals on the management of acutely unwell patients. Regular multidisciplinary meetings of specialized consultants and therapists will improve communication and maximize outcomes. In the long term, we anticipate this high-quality development to be cost-effective in reducing the frequency of outpatient appointments and emergency/critical care admissions.