Facing ignorance : people with rare disorders and their experiences with public health and welfare services

• Published in: Scandinavian journal of disability research : SJDR Vol. 15; no. 1; pp. 20 - 32
• Main Authors: GRUT, Lisbet, KVAM, Marit-H
• Format: Journal Article
• Language: English
• Published: Stockholm Ubiquity Press 01.03.2013; Stockholm University Press
• Subjects: Biological and medical sciences; Disability; health and welfare services; Medical sciences; Miscellaneous; Public health; Public health. Hygiene; Public health. Hygiene-occupational medicine; rare disorders; Welfare; Norway; Europe; Statistical data; Handicap; Human; Health system; Accessibility; Professional relation; Health staff patient relation; Care
• ISSN: 1501-7419; 1745-3011
• DOI: 10.1080/15017419.2011.645870

This qualitative study shows that people with rare disorders may experience barriers that can be related to the fact that the disorder is labelled 'rare' when they access health and welfare services. Service-providers within a range of sectors and services seemed to be reluctant to get involved in situations that imply diagnoses that are unknown to them. Further, they seemed to be reluctant to accept information offered to them by the user and they hesitated to seek up information by themselves. If the professionals got involved they tended to base their judgements on their personal assumptions, consequently followed by incorrect actions. The service-providers' negative responses represent a significant barrier for accessing adequate services and assistance for people with rare disorders. These experiences cut across the various disorders in the study and they cut across the various services. [PUBLICATION ABSTRACT]