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

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.