Endometriosis patients call for national registry
Hayley Barlow-Ford says better data would have helped her make an "informed choice" about surgery.
www.bbc.co.ukHere are the latest notable developments about Endometriosis UK and related UK endometriosis news.
Key recent headlines
- Campaigners urge faster progress on endometriosis care and data collection in the UK, highlighting the need for a national registry and better NHS data to inform treatment choices. This aligns with ongoing advocacy that a registry would help track treatments, waiting times, and outcomes for people living with endometriosis.[1][2]
- The Endometriosis APPG and public health bodies have previously called for implementation of NICE guidelines and for action to reduce diagnostic delays, with targets aiming to shorten time to diagnosis and improve access to care. This has been a persistent theme in UK policy discussions around endometriosis care.[3]
- Media coverage in 2024–2025 has reported on research and policy discussions around endometriosis care, including calls for longitudinal data, improved pathways, and access to new treatments in the NHS.[4][5]
Endometriosis UK activity
- Endometriosis UK regularly publishes news, updates, and campaigns on its site, including advocacy for improved NHS pathways, increased funding, and information resources for patients and healthcare professionals. Their updates often accompany broader UK policy discussions about Women’s Health strategies and NHS Endometriosis care.[9]
Context and how to follow
- There is a strong, ongoing push from patient groups (including Endometriosis UK) for a national endometriosis registry in the UK to enhance data quality, support research, and improve patient care. Government and NHS stakeholders have acknowledged the need for better data and faster access to specialist advice as part of the broader Women’s Health Strategy.[2][1]
- For the most current items, you can check Endometriosis UK’s News section and major UK news outlets’ health coverage, as these sources frequently report on policy developments, new treatments, and patient experiences.[8][9]
Illustrative example
- A recent UK media piece highlighted patient calls for a national registry to reduce waiting times and improve treatment decisions, illustrating the practical impact of data gaps on patient care.[2]
Citations
- Endometriosis registry advocacy and patient statements.[2]
- Government/NHS remarks and data investment tied to endometriosis care and Women’s Health Strategy.[1]
- APPG/NICE guideline implementation and calls for action in the UK.[3]
- Endometriosis UK News hub for ongoing updates.[9]