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.
February 2021 update
On 26 February 2021 we will meet with Calderdale and Huddersfield NHS Foundation Trust to discuss the findings of our hypermobility syndromes report as well as the results of a short survey of the experiences of patients with hypermobility syndromes at this Trust.
January 2021 update
We continue our work on hypermobility syndromes, though meetings have been delayed due to Covid-19. On 10 January 2021, we presented at on online event entitled Pediatric EDS and HSD: Exploring The Impact of Misdiagnosis. This was hosted by the Ehlers Danlos Society. As soon the recording of the event becomes available we will provide the link on our website. Following the publication of our main hypermobility syndromes report (see below), we received feedback nationally from people with hypermobility syndromes. We are currently in the process of writing up this information.
December 2020 update:
We have now written up the responses to a short survey of people with hypermobility syndromes who attend Calderdale and Huddersfield NHS Foundation Trust. Click here to read our findings.
January 2020 update
As we continue our work into hypermobility, we have updated out national feedback report. You can read the updated report here: Hypermobility national feedback 29.1.20
Response from the NHS England, December 2019
Response from the Department of Health and Social Care, December 2019
November 2019 update:
After Healthwatch Calderdale’s work into hypermobility was raised locally, nationally and on social media, we have been contacted by many people sharing their own experiences of hypermobility.
We thank you all so much for sharing your stories with us.
While we cannot represent people outside of the Calderdale area individually, we will collate all the feedback and update our report to include it as part of the ‘bigger picture’. This includes feedback from people living in the North West, North East, Kent, London and the Midlands.
We will also use your experiences to highlight the difficulties people with hypermobility face in getting a diagnosis and support thereafter with health organisations nationally.
We ask that you also continue to provide feedback to your own Healthwatch (you can find details here) so evidence can be built up around the Healthwatch network.
Parliamentary adjournment debate on Healthwatch Yorkshire & Humber hypermobility syndromes report – 7 October 2019
Response from NHS England Specialised Commissioning Team – September 2019
Reply from Department of Health and Social Care – September 2019
We featured two our case studies as part of our project – click the links below to read more:
We will share our understanding with local commissioners and service providers, NHS organisations and politicians, and ask local Healthwatch across Yorkshire and the Humber to do the same, so that they have a clearer picture of the health and social care experiences of adults with hypermobility syndromes. We hope to interact with commissioners and service providers to work towards addressing the service issues identified.
Please also see the short film below for audio case studies or click here:
To view our toolkit for local Healthwatch click here: Hypermobility Toolkit FINAL
We also had articles featured in specialist magazines:
This is a joint project by all the local Healthwatch across Yorkshire and the Humber, specifically:
Healthwatch Barnsley: 01226 320106
Healthwatch Bradford: 0300 56 10 987 or 01535 665 258
Healthwatch Calderdale: 01422 399433
Healthwatch Doncaster: 0808 8010 391
Healthwatch East Riding of Yorkshire: 01482 334 999 or 01482 665 684
Healthwatch Kingston upon Hull: 01482 499038
Healthwatch Kirklees: 01924 450379
Healthwatch Leeds: 0113 898 0035
Healthwatch North Lincolnshire: 01724 844986
Healthwatch North East Lincolnshire: 01472 361 459
Healthwatch North Yorkshire: 01904 683802
Healthwatch Rotherham: 01709 717130
Healthwatch Sheffield: 0114 253 6688
Healthwatch Wakefield: 01924 787 379
Healthwatch York: 01904 621133
Healthwatch Calderdale is leading the project.