Social services homecare for people with motor neurone disease/amyotrophic lateral sclerosis: Why are such services used or refused?

Many patients with the terminal condition motor neurone disease/amyotrophic lateral sclerosis (MND/ALS) do not access social service homecare, which may have implications for the location of end-of-life care. We aimed to identify factors related to uptake of such care in MND/ALS. A case note review of patients at a UK MND/ALS clinic (N = 97) provided data concerning disease onset and severity, demographic variables and care received. Narrative interviews with people with MND/ALS (N = 24) and family carers (N = 18) explored their perspectives on social services homecare. Quantitative analyses highlighted the role of increasing disease severity and age for social services homecare uptake. However, qualitative findings revealed a number of barriers delaying the uptake of such care. ‘Internal’ issues focused on retaining control and normality within the home. ‘External’ issues arose from limited understanding of the disease amongst service providers and lack of awareness of service entitlement amongst patients and carers. Multiple factors are implicated in the uptake of social services homecare. Uncertainties surrounding service entitlement must be addressed, including the simplification of bureaucratic procedures and clarification of the roles of health and social care professionals. Service providers need a greater awareness of the nature of the disease and their role in its management.