ABSTRACT

A book about the patient-perspective approach to health care would be incomplete without including a chapter of patients’ perspectives. In this chapter, five people who have been patients or the carers and advocates of patients provide examples of their experiences of the health system in which their perspectives were not sought or respected and in which their perspectives were not used to inform treatment design and delivery. These people each have unique stories about different aspects of health. Their accounts are compelling and provide justification for the urgency of transitioning to a patient-perspective model of health service delivery. Two of the people whose experiences are described in this are children, and one of the stories comes from the time the child was a baby, so the stories provide illustrations of less than ideal health care across a wide age range. The stories of these children are told by their parents. Of the three adults who provided stories, two adults had unhelpful interactions in mental health services, and the third one had a surgical procedure performed without her consent.