Models of care for motor neuron disease: setting standards

Models of care for people with motor neuron disease (MND) must be designed in a patient-centered format, with an in-built flexibility and responsiveness that reflect the evolving nature of the condition. Diagnosis should be made as early as possible. Patients should have early access to centres with specialist knowledge of amyotrophic lateral sclerosis (ALS). Services should be flexible and responsive to the needs of the patient, and operate to best advantage when functioning as a coordinated team that cross-refers internally. Patients with ALS should be empowered to make rational end-of-life decisions based on maximizing quality of life and maintaining dignity. All models of care should be designed to cater for the sudden change from health to chronic illness, and should aim to provide a core of specialties that are patient-oriented, flexible and responsive. Ultimately, models of care should be assessed based on their outcomes.