Abstract

Advances in medical management, in particular the introduction of home ventilation in the 1990 s, has resulted in prolonged survival beyond early adulthood for children with severe neuromuscular diseases such as Duchenne Muscular Dystrophy (DMD). Seamless transition is thus becoming increasingly important and has been highlighted as a priority area for review by the Care Quality Commission (CQC). Poor transition can result in poor compliance and worse medical outcomes. Many young people with neuromuscular disease require a complex multi-disciplinary package of care, as highlighted in the NICE accredited standards of care for DMD. Negotiating fragmented adult services is a challenge for this population, and poor compliance may lead to costly prolonged unplanned emergency admissions, often to intensive care. At Queen Square we have developed a specialised unit called the ‘neuromuscular complex care centre’ (NMCCC) which provides a ‘one-stop shop’ model of care with access to all of the medical specialists and therapists likely to be involved in the care of adults with neuromuscular diseases in a purpose built adapted environment. We anticipate this model of care, which is streamlined, will be both cost-effective and beneficial to patients, while at the same time will reduce unplanned admissions thorough proactive screening for complications.