Health professionals' responses to multiple sclerosis and motor neurone disease

Abstract

This study compares the responses of health professionals to multiple sclerosis (MS) and motor neurone disease (MND) in order to determine similarities and variations in responses to the two disorders and the issues critical to caring for patients with these conditions. Health professionals were more negative about MND compared with MS in terms of the amount they felt able to offer patients, their confidence in managing patients and their ability to convey hope. For a number of issues concerning the management of patients, the level of difficulty experienced by health professionals was similar for both MS and MND. These were resource issues, the health professionals' ability to remain positive in the face of progressive disability, interdisciplinary team problems and difficulties regarding patient care. The main concern of health professionals, for both conditions, was the effect of progressive disability on the patient. For MND, management issues which health professionals found comparatively more difficult than for MS were patients' short prognosis and impending death, communication problems and progressive disability. Issues which were comparatively more difficult for MS than MND were changes in patients' affect, cognition and personality, problems with planning care because of the disorder's unpredictable course, problems with diagnosis such as making and disclosing the diagnosis, and the tendency for patients to be difficult or demanding. Some notable differences in responses between health professionals in different health care settings were found. The findings have implications for changing health professionals' conceptualization of ‘hope’, developing ways of improving communication between health professionals in different health care settings so as to enable them to learn from each other's expertise and experiences and redressing gaps in service provision, especially for young people with MS.