The British Society for Rheumatology (BSR) published a statement this week, concluding that they are of the opinion that the ‘evidence base is insufficient to support the development of guidelines for hypermobility’.
We are disappointed that the BSR has made this decision. We are also disappointed that the BSR never invited The Ehlers-Danlos Society and other relevant organizations and experienced health care professionals, as stakeholders, to join discussions with them on this matter.
The BSR does, however, explain that “concerns about the diagnosis have been sufficient that NICE is now considering developing guidance and the society (BSR) has offered to provide input into this process.” We hope that the National Institute for Health and Care Excellence (NICE) will consider guideline development in this neglected area of care. We are ready to support this process for all of our community; people with hypermobility-related disorders, carers, and health and social care professionals alike.
We will update the community on the progress of this work.
