The project aimed to collect the voices of adults with hypermobility syndromes in Yorkshire and the Humber in order to develop an understanding of their health and social care experiences. There was also an opportunity for participants to tell us anything else that they felt was relevant to their experience of their condition.
Thank you to the 250 people across the region who responded to the survey.
Healthwatch Calderdale coordinated the project and has now published the Hypermobility Syndromes report.
- Experience of difficulty in NHS care specifically regarding: obtaining a diagnosis, referrals and waiting times, misdiagnosis, partial diagnosis or stereotyping, the reaction of health professionals to symptoms, communication between health professionals, lack of knowledge among many health professionals and inadequate or lack of NHS care
- In terms of social care, people reported a lack of knowledge among professionals, which led to problems at needs assessments as well as cases of parents being wrongly accused of fabricating illness in their children