A qualitative study of patient and professional perspectives of healthcare services for multiple sclerosis: implications for service development and policy.

ABSTRACT

Multiple sclerosis (MS) is a chronic degenerative condition, with heterogeneous symptoms, and an unpredictable prognosis. Previous literature suggests patients' experiences of healthcare are unsatisfactory. Primary care may play a key role in the management of people with MS (PwMS); however, provision of services for PwMS has received little focus in the primary care literature. This study aimed to explore perspectives and experiences of PwMS and healthcare professionals of UK healthcare services for MS. Semi-structured interviews were conducted with 24 PwMS, 13 Practice Nurses, 12 General Practitioners and 9 MS Specialist Nurses in northern England, between October 2012 and April 2014. Participants were purposively selected. Data were analysed thematically using constant comparative analysis. The theoretical framework of candidacy was used to interrogate data, with themes mapping onto the National Institute for Health and Care Excellence (NICE) guideline for MS. How PwMS interpreted symptoms as leading to candidacy for care dictated help-seeking. PwMS required additional support in identifying symptoms due to MS. Participants reported poor experiences of care including poor access to services, poor continuity of care and poor interpersonal interactions with perceptions of limited person-centredness. PwMS and professionals identified that MS-related disability and progression of symptoms required responsive care. Relational continuity enabled PwMS to feel understood, and professionals to holistically appraise symptoms and progression. In conclusion, continuity and patient-centredness of care are central to positive healthcare experiences for PwMS and professionals. Services need to be more accessible to ensure responsive and effective MS management. This study provides unique findings on the role of primary care for PwMS, and the relationship between findings and MS NICE guideline recommendations with implications for service delivery in the community.