Translating Research into Change: Reporting the Lived Experience of hEDS and HSD in Scotland
Keywords:
Hypermobility, Ehlers-Danlos Syndromes, Lived Experience, Scotland, Pathway of Care, Participatory ResearchSynopsis
This report offers a comprehensive examination of the lived experiences of individuals with hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobile Spectrum Disorders (HSD) in Scotland. The findings presented are primarily drawn from the “hEDS-START” project, an initiative aimed at highlighting the challenges faced by individuals living with hEDS/HSD in the United Kingdom.
Through a combination of surveys and patient engagement events, this project has gathered invaluable insights into the experiences of patients navigating the healthcare landscape in Scotland and focuses on the urgent need for a pathway of care within the NHS. Currently, there is a glaring absence of such a pathway, resulting in prolonged diagnostic journeys and inadequate access to specialist care for patients.
While we report here the survey data from the Scottish respondents, and the experiences discussed by our Scottish patient engagement group, it is important to bear in mind that these experiences are relevant to all of the devolved nations.
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7 May 2024
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Copyright (c) 2024 Kathryn Berg, Dervil Dockrell; Rose Matheson (Illustrator)
