The patient journey after stroke: what services do patients in Lothian access and what are their experiences - a qualitative exploration.
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Introduction: National guidelines have been generated in order to advise on optimal service provision after stroke during the acute, rehabilitation and community stages of management (RCP 2004, SIGN 2002, Adult Rehabilitation Framework in Scotland, 2007, Kerr Report 2005). Local evaluation and review of community based service change falls within the remit of the Lothian Managed Clinical Network for Stroke and a specially appointed AHP Consultant. Interviews undertaken in a qualitative study to explore experiences of a Functional Electrical Stimulation (FES) clinic resulted in additional rich data regarding patients and their carers experiences during all stages of their journeys after stroke. Methods: Thirteen stroke patients and ten carers managed within NHS Lothian were interviewed using semi-structured interviews within the framework of Interpretative Phenomenological Analysis. Purposive sampling ensured a variety of experiences. Interviewees were asked to tell the story of their stroke from initial symptoms to the day of their interview, at least six months post-stroke. Transcripts were thematically analysed. Results: Themes emerging from the data provided insights into widely varying journeys through acute, rehabilitation and community phases of management. Of particular interest were contrasting positive and negative experiences of seeking help after onset of symptoms, information provision throughout management, routes for accessing services, and highly varied geographical service provision. Conclusions: This study highlighted the value of qualitative research in investigating service provision to stroke patients in Lothian, enabling comparison with national guidelines. The themes provided an in-depth understanding of both the positive and negative experiences of the journey through local stroke services as experienced by users and their carers, particularly highlighting inequalities in community service provision. This information may help inform future developments in the provision of community based services to stroke patients in Lothian.