Ask your MSP to support better diagnosis and care for EDS and HSD in Scotland

People living with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) in Scotland continue to face major barriers to diagnosis, treatment and support.

Research from the hEDS-START project found that people with the most common type of EDS, hypermobile EDS (hEDS) and HSD, face an average diagnostic delay of around 20 years in Scotland. Many respondents reported needing to pay privately for diagnosis or travel to England to access appropriate healthcare.

The study also found high levels of chronic pain, disrupted education and employment, mental health impacts, and fragmented access to care.

Feedback from EDS UK members in Scotland reflects these findings, with many reporting long waits for diagnosis, difficulties accessing knowledgeable healthcare professionals, and inconsistent support depending on where they live.

EDS UK has worked with NHS Wales to co-produce a national pathway for hypermobility disorders, designed to improve diagnosis, referral guidance and support in primary care. The Scottish Government has confirmed it is aware of this work and is waiting to see the outcome and any learning that could be applied in Scotland. BUT people with EDS and HSD in Scotland cannot continue to wait while inequitable access to care persists.

Enter your postcode to email your MSPs and ask them to support action on diagnosis, guidance and care pathways for EDS and HSD in Scotland.