Local Healthwatch across Yorkshire and the Humber published a report in 2019 on the health and social care experiences of people with hypermobility spectrum disorder (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS). The issues were then raised locally by Healthwatch Calderdale, which led the work nationally via an adjournment debate in the House of Commons and on social media (2019). At this point, Healthwatch Calderdale started to receive feedback directly from people across the country sharing their own experiences of NHS care for these types of hypermobility syndromes.
While we are unable to support people outside of the Calderdale area, we decided to collate the national feedback as an update to our work as it shows the issues we discovered in our work in Yorkshire and the Humber are also being experienced in other parts of the country.
In this report you’ll find:
• Main themes
• GPs lack of knowledge about the condition.
• Difficulties obtaining a referral and diagnosis issues
• Poor access to NHS care and feedback on private assessments
• Life impact and lack of joined-up support for children
• Ideas for improvement