Exploring the experiences and satisfaction with hospital and support services forpeople living with Epidermolysis Bullosa in Ireland.

Epidermolysis bullosa (EB) refers to a collection of rare inherited connective tissue diseases in which minimal contact with the skin can result in painful blisters and wounds. This survey is part of a larger research project between EB charity Debra Ireland and the University of Limerick titled: “Developing a Support Service Strategy for DEBRA Ireland through Participatory Action”. Objectives: To explore the experiences and satisfaction with hospital and support services among people living with EB in Ireland. This survey enriches the qualitative aspect of the larger research project which aims to develop a strategy for support services for people with EB in Ireland. Methods: A postal survey was used to gather the views of participants. 43 members of Debra Ireland were recruited and 20 surveys (46.5%) were returned. Data was analysed using SPSS and qualitative comments were analysed separately to enrich the numerical data. Findings: The majority of participants were satisfied with the standard of hospital care but felt the direct provision of a medical card for those diagnosed with EB would alleviate the expense associated with acquiring essential provisions such as wound care. Conclusion: Participants risk reduced health outcomes if provisions central to their survival are not provided within their financial means. Resultant poor occupational participation from unmet healthcare needs is an infringement of their human rights. Occupational Therapists are well placed to advocate that the unique needs of this population be reflected in future developments of the Irish health system