The UK’s first Neuromuscular Complex Care Centre based at the National Hospital for Neurology and Neurosurgery, Queen Square, London opened on the 9th September 2014.
This facility has been developed by the team led by Professor Mike Hanna, Consultant Neurologist and Dr Ros Quinlivan, Consultant in Neuromuscular Diseases, at the National Hospital.
The Neuromuscular Complex Care Centre has been designed to provide a one-stop multi-disciplinary assessment of people with Neuromuscular disorders. Many of these conditions are genetic and include muscular dystrophies, inherited myopathies, mitochondrial diseases, channelopathies, inherited neuropathies and metabolic muscle diseases. Others are acquired and include myasthenia gravis, myositis, motor neuropathies and inflammatory neuropathies. Improvements in paediatric care have led to a rapidly growing cohort of young adults transitioning to adult services. In the past these people would not have survived beyond early adulthood and did not reach adult services. There is increasing evidence, including NICE guidance, that with co-ordinated, high quality, multisystem, multidisciplinary care life-expectancy is significantly increased and is high-quality.
Although these diseases are diverse, many patients have clinical problems in common including muscle weakness and multisystem involvement often with respiratory and cardiac failure. Evidence from a recent audit with NHS commissioners across 12 NHS Trusts indicates that neuromuscular patients often experience fragmented clinical care and endure many avoidable unplanned acute hospital admissions. This creates avoidable distress for patients and families and is estimated to cost NHS England in the region of £70m per year.
In order to comprehensively address the complex multisystem care needs of this expanding patient population and to reduce unplanned admissions, the clinical team at the Queen Square Centre for Neuromuscular Diseases (http://www.cnmd.ac.uk) devised the concept of a Neuromuscular Complex Care Centre (NMCCC). With generous support of over £2m from Queen Square Enterprises (www.qsenterprises.com), a wholly-owned subsidiary of UCLH Charity, the NMCCC has become a reality for patients. It offers one-stop multidisciplinary care in a major adult neuroscience centre setting.
The multi-disciplinary team include: Neurologists, respiratory and critical care consultants who specialise in non-invasive ventilation, cardiologist, gastroenterologist, clinical psychologist, physiotherapist, speech and language therapist, dietician and specialist nurses. UCLH Charity aims to support the delivery of a network of similar NMCCCs across the UK. This will ensure the NHS continues to lead the world in efficiently providing the best possible care and outcomes for this new patient group.