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At Healthwatch Calderdale we work on a variety of projects. We respond to feedback from the public to help influence the direction of our work as well as participate in national cooperative work with other organisations. This allows Healthwatch to be reactive and flexible when new problems come up in the community.

If there are issues you think we should be working on, or there are any problems with any of the reports below, please contact us on info@healthwatchcalderdale.co.uk or by phone on 01422 399 433.

Latest Reports > Hypermobility

Health and social care experiences of people with hypermobility spectrum disorder (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS)


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

By
National work Hypermobility
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