An investigation of patients and providers’ views of services for motor neurone disease

Abstract

The aims of this study were to investigate whether health and social care services met the needs of patients with motor neurone disease (MND) and their carers, to explore their preferences for service delivery and to compare these preferences with the services provided locally. Design: Structured interviews were conducted with 11 patients and 9 family carers living in three countries in southern England. A questionnaire survey of 17 commissioners from primary care trusts and social care was undertaken to collect detailed information about the scale and scope of local services. Results: Patients and carers consistently praised professionals’ efforts but identified deficiencies in professionals’ knowledge of MND and the organization of health and social care services, including the availability of key workers, respite care and specialized equipment, the speed of services, counselling and emotional support, and patients and families’ limited involvement in service evaluation. Conclusions: The three most important ways of improving services for patients with MND and other life-limiting neurodegenerative diseases would be the introduction of knowledgeable, specialist primary neurological care teams; a requirement for interprofessional and multi-agency cooperation; and active involvement of patients and carers in service department