BSR statement on developing hypermobility guidelines

The British Society of Rheumatology has today issued a statement saying that it will not be developing guidelines on the diagnosis and management of hypermobility-related problems due to insufficient evidence to inform guidelines. The statement includes reference to the Ehlers-Danlos syndromes toolkit we developed in partnership with the Royal College of GPs (RCGP), released in May 2018.

The RCGP toolkit continues to be widely accessed within the UK and internationally. The Ehlers-Danlos Support UK has received positive feedback on its content from medical professionals and we have heard from patients who have benefited as a result. The toolkit will be updated, based on recent research, during 2020.

We agree with the BSR’s summary that expert views on the diagnosis and management of hypermobility-related problems in both adults and children are diverse. This is hampering patients’ access to accurate diagnoses and appropriate advice and treatment.  As part of our strategy to reduce the time to diagnosis, we continue to try to engage with the relevant UK professional bodies to gain consensus on an action plan to address this issue. We welcome NICE’s involvement in the potential development of guidelines and will seek to be involved in this work.

 

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