Written Question · S6W-29631 · Session 6
Regarding hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD), what discussions it has had with healthcare …
The question
To ask the Scottish Government, regarding hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD), what discussions it has had with healthcare providers regarding (a) the development of and (b) equipping patients with high-quality self-management tools and resources early in their diagnostic journey, to encourage agency and independence in managing their condition.
The answer
The Progress Report on Scotland’s Action Plan for Rare Disease (August 2024) noted the discussions taken forward with NHS Scotland regarding the implementation of Future Care Planning, shared decision making and the Right Decision Service. These are all useful tools that can be used by people with a rare condition to encourage agency in making the most of consultations, and assist healthcare professionals in knowing what matters most to the person involved. We will continue to promote the use of these tools and any others for people living with a rare condition.
In the Official Report
No contribution in the Official Report cites S6W-29631 by reference.