BSR has been approached by a number of members with a request that we look at developing guidelines for the diagnosis and management of individuals with hypermobility.
A recent toolkit for diagnosis produced by the RCGP has proven controversial and raised safeguarding issues for children labelled with the diagnosis. A guidance statement produced by BSPAR colleagues on Hypermobility received criticism from the UK and USA EDS patient support groups on some of its recommendations.
BSR has a NICE-accredited process for producing guidelines which starts with a robust systematic review. We have looked at whether there is sufficient evidence to produce a guideline on hypermobility on a number of occasions. We have reviewed this in light of comments and again have concluded that the evidence base is insufficient to support development of a guideline.
In addition, the expert views on the diagnosis and its management are diverse and firmly held despite this lack of evidence. We do not feel that we can produce a robust piece of work under these circumstances. Concerns about the diagnosis have been sufficient that NICE is now considering developing guidance and we've offered to provide input into this process.