SearchEDS UK hold an awareness event in Scottish Parliament
- 16 May, 2023
- EDS UK news
Ehlers-Danlos Support UK held an awareness event in the Scottish Parliament on the 4th May. EDS UK’s Chair Stephen Stacey and Managing Director Kay Julier joined Scotland volunteers Anne, Michele and Jessica who were instrumental in organising the event. The event was sponsored by Marie McNair MSP and around 10 other Members of Scottish Parliament (MSPs) attended, including Jenni Minto, the Minister for Public Health and Women’s Health.
Michele and Jessica made a big impact speaking about their personal experiences of EDS and member Roxanne read a poem she had written. Regular EDS UK collaborators Dervil Dockrell and Kathryn Berg, from the University of Edinburgh’s and NHS Lothian’s Institute of Genetics and Cancer showed a poster of their research on Scottish therapists’ experiences of managing symptomatic hypermobility and discussed potential new collaborations with guests from other Scottish universities. Space was limited but we were very pleased to be joined by invited members from Scotland and some NHS and other healthcare colleagues.
Conversations took place with each MSP as well as staff representing MSPs who hadn’t been able to join. Leaflets and copies of our The Agency Needed To Prosper report, our 2019 consultation with young people in Scotland, were given out. We asked all attendees to support our upcoming #EnoughIsEnough campaign to improve NHS services for those with EDS and HSD.
A huge thank you to Anne, Michele and Jessica for organising such a successful event!