An NHS national pathway for hypermobility disorders in Wales

• 
• 15 May, 2024


• 
• EDS UK news

We are delighted to announce that The Ehlers-Danlos Support UK is working with NHS Wales to coproduce and implement a national pathway for hypermobility disorders in Wales. 

In May 2024 we launched our #EnoughIsEnough campaign, to highlight the neglect and harm caused by the lack of diagnosis and management services for hypermobile Ehlers-Danlos syndromes (hEDS) and hypermobility spectrum disorder (HSD) within the NHS. Part of that campaign was a petition signed by over 1,000 people to request suitable services for all the Ehlers-Danlos syndromes and HSD in Wales.

All petitions in Wales that collect over 250 signatures are reviewed by The Senedd’s petitions committee. After discussions with ourselves and the Health and Social Care Secretary, the alarming extent of the problem was discovered and we were introduced to key NHS decision makers.

We are now working with the strategic clinical network for Musculoskeletal care (MSK) who have agreed to coproduce and implement a national pathway with us. This pathway will be available on the community HealthPathways system. HealthPathways is an online manual used by front-line clinicians in Wales to make better assessment and management decisions for their patients. You can read more about the HealthPathways system in Wales on digital health.

Furthering our fight for better services in Wales, our Lead Engagement volunteer for Wales, Tasha, and volunteer Area Coordinators Ems and Emma where in the Senedd on 15th May, to talk to Members of the Senedd and raise awareness.

So many of our members are struggling to access the right diagnosis and care for their condition and often have to look at paying privately for care. This groundbreaking partnership with the NHS will pave the way for better diagnosis and support for those with EDS and HSD in Wales.  Tasha, EDS UK Lead Engagement volunteer for Wales

We are excited and proud to be working with NHS Wales in co-creating and implementing the national pathway and hope it will quicker diagnosis and access to the right care. We would especially like to thank our volunteers Tasha, Ems and Emma for their continued support of our work in Wales.