The perception of the current provision of care for multiple sclerosis sufferers in the community

Abstract

This multistakeholder study looked at the current provision of care for patients with multiple sclerosis (MS) within North Hillingdon, from the perspective of both the patient and the healthcare professional. Using in-depth interviews and focus groups, the study explored the patients' perception of their current care provision and unmet needs. Six main themes emerged from the research: lack of support at diagnosis; lack of information (both short and long term); social isolation; the impact on the family and carers; nonpresentation of other medical problems; inequality of access to care, and a lack of continued and co-ordinated care. The multidisciplinary focus groups and questionnaires carried out with hospital consultants, doctors, GPs, practice nurses, district nurses and physiotherapists echoed these themes. The main proposal that emerged from the data was to have an individual with expert skills and knowledge in managing MS, to be appointed at Primary Care Trust (PCT) level. This proposal would allow a best possible model of care to be offered to all patients with MS across a PCT, and in so doing meet demands of clinical governance.