We believe patients with hypermobile Ehlers-Danlos syndromes EDS (hEDS) and hypermobility spectrum disorder (HSD) aren’t receiving the care and support they need through all A&E departments. There needs to be more extensive training on this condition for doctors and nurses to provide adequate care.
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We would like the Government to fund training on Ehlers Danlos to all Doctors and nurses so that correct care can be given to patients with dislocation, subluxations and other symptoms of the condition that can be debilitating to the patients. Many patients are deciding not to attend the hospital A&E due to the fear of being turned away or to be told that there is absolutely nothing wrong and they are arriving just for pain medication or there is a phycological issue.