“Until there is a cure, there is care”: a person-centered approach to supporting the wellbeing of people with Motor Neurone Disease and their family carers

Background: There is a lack of interventional studies to support the psychosocial wellbeing of people with MND (PwMND) and their family carers. Moreover, their experiences with the models of care already provided by ALS/MND voluntary organisations have not been well investigated. Objectives: To report on a person-centered model of care, the MND Advisory Service, designed to support the needs of PwMND and their family carers, to explore their experiences with the service they received and to identify which aspects of this service were most needed and valued by the service users. Methods: Participants were recruited from the MND Association in Western Australia. PwMND and carers were invited to separately complete anonymous postal surveys (2015-17), using a mixed method design comprising quantitative and openended questions. Results: The average response rate across the 3 years was 38% (138 patients and 117 carers); 84-89% of both groups felt more supported and cared for as a result of the service and 79-82% felt they were able to make more informed decisions to manage their health and wellbeing. Ninety percent of both groups found the MND Advisory Service of high value practically and emotionally, especially the personal contact and time dedicated to the visit, with 86-88% stating that the service had met their expectations. Conclusions: Two unique features of this service, not provided by other services to the same extent, are the emotional benefit to both groups and the particular focus on the family carers’ needs. Until such person-centered models of care are properly investigated through the experiences of their users, erratic changes in care funding will pose a threat to their effective operation and even viability. The drive to find a cure should not detract from the fact that PwMND and their families still need to be supported physically and psychologically until then.