Under consideration PE2038: Commission suitable NHS services for people with hypermobile Ehlers-Danlos syndrome and hyper mobility spectrum disorders
Calling on the Scottish Parliament to urge the Scottish Government to commission suitable NHS services for those with hypermobile EDS (hEDS) and hypermobility spectrum disorders (HSD), and to consult with patients on their design and delivery.
Previous action taken
Volunteers and members from The Ehlers-Danlos Support UK have met with Bob Doris MSP as a result of interactions via the Rare, Genetic and Undiagnosed Conditions Cross Party Group. Constituents have met with Mairi McAllan MSP, Angela Constance MSP, Bill Kidd MSP, Pauline McNeill MSP, Emma Roddick MSP and Daniel Johnson MSP.
Motions on behalf of constituents have been raised in the chamber of the Scottish Parliament by Martin Whitfield MSP and Michelle Thomson MSP.
A meeting with Emma Roddick MSP on 4 November 2022 resulted in Ms Roddick publicly calling for a pain pathway for those with EDS and others. She also agreed to speak to then Cabinet Secretary for Health Humza Yousaf about the issues and to raise a question in the Parliament about a care pathway for people with EDS.
hEDS is a connective tissue disorder with body-wide symptoms which can be disabling, affecting all aspects of life. Symptoms include musculoskeletal problems, chronic pain and fatigue, gastrointestinal disturbance, pelvic and bladder problems, anxiety and more. There is no single test, which makes diagnosis challenging. HSD presents many of the same symptoms and shares the same diagnostic challenge. Together, hEDS and HSD are thought to affect 1 in 500 people.
Historically, those showing symptoms have been referred to local rheumatology departments where service access is known to be inconsistent.
While there is a commissioned diagnostic service in England for rarer types of EDS (which can be accessed by people in Scotland), diagnosis and management has relied on the personal interest and knowledge of a small number of clinicians rather than formally commissioned services.
The situation described has resulted in inequalities in access to healthcare, causing anxiety, distress, and unnecessary pain and suffering for those waiting for diagnosis, those on inappropriate treatment pathways, and their families.