Emma Roddick MSP has written to Jenni Minto MSP, Minister for Public Health, supporting Ehlers-Danlos Support UK’s calls for training for healthcare professionals and a clear pathway for patients with these conditions.
The campaign group has drawn attention to the fact that the average time for diagnosis of Ehlers-Danlos Syndrome (EDS), a spectrum of hypermobility conditions, in Scotland sits at over a decade – and many of the people the organisation supports, who live with chronic pain and disability, travelled to England to receive their diagnosis.
Ms Roddick, who sponsored Ehlers-Danlos Support UK to promote its work in the Scottish Parliament earlier this EDS Awareness Month, said:
“I have written to the Minister for Public Health to draw attention to the issues that Ehlers-Danlos Support UK has raised, calling for a pathway.
“This is something that I’ve raised in Parliament repeatedly over the last few years and it’s good that we get the opportunity in May to keep raising awareness about these conditions and what patients are going through.
“I suffer joint pain and hypermobility – it’s not fun, and it’s even worse when you don’t know why you feel so bad and what might help.
“Particularly when the recommended treatment is usually self-management, it is crucial that people are given the right information, receive a diagnosis, and are put on an agreed pathway for managing their condition.
“The team members at Ehlers-Danlos Support UK raised so much awareness when they visited Parliament earlier in May, and I am hopeful that the Minister will now meet with me and discuss what can be done to better serve those trying their best, but struggling, to manage their health due to EDS and hypermobility.”
