We call for a National Endometriosis Registry to record, track and annually audit data on diagnosis, treatment & outcomes. We think this could help to: Hold services to account; Reduce postcode inequality; Ensure endometriosis is treated as a chronic condition with more timely, effective care
Leading charities estimate it takes almost 9 years on average in the UK to be diagnosed with endometriosis, which can cause avoidable pain and mental health struggles, and is linked to fertility problems. We believe that systems to track diagnosis, treatment, or outcomes are inadequate, and that there are limited ways to see where care may be failing or to measure improvement. We think other countries have proven that registries and audits can improve care, shorten delays, and drive research.
Government response
There are no current plans to develop an endometriosis registry, but the Government acknowledges the challenges and has made progress towards improving endometriosis diagnosis, treatment and care.