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Once a patient has been diagnosed with the neurodegenerative disorder amyotrophic lateral sclerosis (ALS),1 management varies considerably around the world. Some patients are managed by a variety of healthcare professionals, for example, a primary care physician, a neurologist, general or palliative care physician, who may each act in relative isolation. Alternatively, it may involve more recently developed multidisciplinary models of care, led by someone with specialised knowledge of the uniquely complex, often rapidly-evolving needs of this patient group, and of those that care for them.
The Motor Neurone Disease Association of England, Wales and Northern Ireland, established in 1979, pioneered a Care Centre model of ALS led by a coordinator, typically with a nursing background. It seems logical that the concentration of patients with ALS in highly specialised clinics would go hand in hand with the accumulation of resources and clinical expertise, …