Endometriosis registry could stop 'guesswork', patients say
Hayley Barlow-Ford says better data would have helped her make an "informed choice" about surgery.
www.bbc.comHere are the latest developments I can share about Endometriosis UK from recent reporting:
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Endometriosis UK hosted a roundtable in late 2025 focused on the NHS 10-year Health Plan and how it could impact endometriosis care, including discussions on reducing diagnosis times and improving access through neighbourhood health services. They’re also preparing a report for the Department for Health and Social Care to influence policy [Endometriosis UK November Roundup, November 2025]. [cite ]
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There has been ongoing emphasis on data and care pathways, with UK-wide discussions about establishing national registries or better data collection to inform treatment choices and track outcomes as part of the broader Women’s Health Strategy. This aligns with patient calls for more robust data to guide care decisions. [BBC article on endometriosis registry, 2025; BBC News synopsis, 2025] [cite ][cite ]
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Public awareness and advocacy remain active in 2026, with media coverage highlighting delayed diagnoses (often many years) and calls for urgent action to improve access to diagnosis, treatment, and workplace support for people with endometriosis. Campaigns and media features emphasize the need for systemic changes within NHS and workplaces. ITV News coverage in April 2026 underscores ongoing concerns about care improvements [ITV News, 2026-04-08]. [cite ]
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In related progress, UK hospitals and universities have continued research and local service developments, including new support centres and localized care initiatives to address gaps in access and treatment options in some regions. BBC coverage of local endometriosis centres and university-led research points to regional efforts to improve patient experiences [BBC Hull local centre article, 2025-10-02; Leeds Beckett research piece, 2024]. [cite ][cite ]
If you’d like, I can pull the most current headlines and summarize any particular source (e.g., BBC, Endometriosis UK site, ITV) with direct quotes and dates. I can also set up a quick brief that tracks ongoing updates through the next few weeks.