SearchEDS UK campaigning reaches Holyrood
- 7 May, 2024
- EDS UK news
Today we where in Scottish Parliament at Holyrood meeting MSPs and talking to them about the need for a pathway for people living with hypermobile EDS (hEDS) and hypermobility spectrum disorders (HSD).
New research published today from the hEDS-Start study evidences the lived experience of hEDS and HSD in Scotland. It found that individuals with hEDS and HSD in Scotland endure an average wait of 20 years for a diagnosis and a substantial proportion resort to private healthcare or travel to England. They also found there is a fragmented approach to care with many mental health implications including high rates of anxiety, depression and psychological distress.
Several recommendations are being presented to MSPs this week including:
- The establishment of a pathway of care
- Provision of enhanced education and training
- Integration of neurodiversity considerations
- Empowering patients through the provision of high-quality self-management tools
Anne Sutherland our lead engagement volunteer in Scotland said, “A year ago this month we set out on a task of delivering an exhibition in Holyrood as we knew there needed to be better awareness of the situation in Scotland. We now know we can’t get a specialist service in Scotland so we need to get an agreed pathway in place. This year we have worked hard to deliver the petition, hEDS-Start survey, a patient engagement day, publication of the report, video and scrap book all culminating in this exhibition today in Holyrood. It could not have been done without the unwavering dedication and commitment of Kathryn Berg and Dervil Dockrell from the University of Edinburgh. Michele Goldie is also here today as the face of our members and Susan Booth Chief Executive is here too. We are already having some good conversations and are flying the flag for EDS awareness!”
Special thanks to Kathryn and Dervil, and to Michele and Anne for their time and dedication. They were also featured on STV which you can watch here.