Our Work

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

Healthwatch Calderdale has now published its Hypermobility Syndromes report. We had over 250 responses to the survey, thank you to everybody who took part.

The purpose of our project was 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.

What would you do to improve health and care services in Calderdale?