by Ehlers-Danlos Support UK
We were very disappointed to be told just before Christmas that the Royal College of GPs (RCGP) wanted to withdraw the Ehlers-Danlos syndromes (EDS) toolkit for GPs. The College planned to remove the toolkit from the RCGP website at the end of January. The RCGP cited pressure on its limited resources as a result of the pandemic and contention around the toolkit from various sources as reasons for its decision. While we understood that the College wanted to prioritise use of its resources, the move would have been a huge backwards step for people with EDS and related conditions. However, following a letter from medical professionals and a petition from patients, we are very pleased that the RCGP has agreed to host the EDS GP toolkit for another six months.
Following its launch in May 2018, the toolkit was accessed in its initial few months by more people than for any other preceding toolkit: over 24,000 from nearly 40 countries across five continents in the first four months alone; and since then, by around 2,000 unique visitors per month.
The Ehlers-Danlos Support UK funded the development of the toolkit and worked in collaboration with the RCGP, Dr Emma Reinhold, and a group of other clinicians and scientists on this important project.
We are pleased the College reconsidered its decision. Ehlers-Danlos Support UK put out a call for examples of the impact that the toolkit has made, and received almost 70 submissions within the first 12 hours. We are working with medical professionals and colleagues in other organisations to facilitate a review of the toolkit.