Motor neurone disease: can we do better? A study of 42 patients

A feeling that patients with motor neurone disease were not always well managed prompted a study of the symptoms, functional levels, and use of aids in a group of 42 patients. Pain, falls, constipation, and swelling of the legs emerged as the major symptomatic problems. At the time of assessment two thirds of the patients appeared to be in need of aids which had not been provided. Disturbance of sleep secondary to positional nocturnal discomfort caused much distress to both the patient and spouse; and this might be eased by the use of an electric turning bed. Over half the patients said that they disliked attending neurology outpatient clinics. Criticism centred on poor transport arrangements, lack of information about the control of symptoms, and unsatisfactory help from junior staff. A key worker should be identified as part of a new strategy for managing these patients.