Hypermobility Syndromes Project

Healthwatch Calderdale has now published its Hypermobility Syndromes report – 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.

We had over 250 responses to the survey – thank you to everyone who took part. 

Response from the Department of Health and Social Care, December 2019

To view the response click here 

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.

A report with feedback from people around England can be found here Hypermobility national feedback 15..11.19 please note this is a working document and will be updated as and when we receive further feedback.

Parliamentary adjournment debate on Healthwatch Yorkshire & Humber hypermobility syndromes report – 7 October 2019

To watch the debate – click here

 

Response from NHS England Specialised Commissioning Team – September 2019

To view the response – click here

 

Reply from Department of Health and Social Care – September 2019

To view the response – click here

 

To view the final report – click here

To view our overall findings and recommendations – click here

We featured two our case studies as part of our project – click the links below to read more:

Case Study A- hypermobility syndromes FINAL

Case Study B- hypermobility syndromes FINAL

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:

EDS UK SUMMER 2018 SCANNED ARTICLE

HMSA scanned article 1 of 2 Summer 2018

HMSA scanned article 2 of 2 Summer 2018

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.