Hypermobility Feedback

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Summary of report content

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 unable to support people outside of the Calderdale area, Healthwatch Calderdale decided to collate the national feedback as an update to our work as it shows the issues discovered in their work in Yorkshire and the Humber are also being experienced in other parts of the country.

  • Why local Healthwatch organisations elsewhere are unable to explore issues
  • surrounding NHS care for these types of hypermobility syndromes
  • Lack of General Practitioner (GP) knowledge of conditions
  • Difficulties obtaining referrals
  • Diagnosis issues
  • Poor access to NHS care
  • Private assessments
  • Life Impact
  • Lack of joined-up support for children
  • How the situation could be improved

There are no recommendations in this report.

There are no follow up actions in this report.

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General details

Local Healthwatch
Healthwatch Calderdale
Publication date
Key themes
Access to services
Accessibility and reasonable adjustments
Caring, kindness, respect and dignity
Communication with patients; treatment explanation; verbal advice
Diagnosis
Service organisation, delivery, change and closure

Methodology and approach

Primary research method used
General feedback

Details of health and care services included in the report

Details of health and care services included in the report
Other
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