Patients need safe ways to be heard

Our call for a National Endometriosis Inquiry includes the need for meaningful patient representation, transparent complaints processes and accountability when concerns are raised.

I have published a personal account of what followed after I announced the national endometriosis charity as the intended beneficiary of our inaugural Cneasú event in September 2023.

I had been unaware of the division within the community. What followed left me navigating online hostility, damaging rumours and repeated attempts to have my concerns addressed directly.

My article describes my experience. It does not present allegations as established findings or invite speculation about individuals.

Read it here:
https://doireannbarrett.substack.com/p/i-organised-an-event-to-bring-patients?r=2lilgm&utm_medium=ios

Patients should be able to raise concerns without feeling excluded or unsafe. Respecting volunteers’ work and expecting fair, accessible complaints processes can go together.

If you have a complaint, I encourage you to use the relevant formal process, retain correspondence and ask what review route is available. You do not have to share your experience publicly to seek accountability.

Please also sign and share our petition on Uplift, even if you previously signed on Change.org:
https://my.uplift.ie/petitions/justice-for-endometriosis-patients-launch-a-national-inquiry-in-ireland

🎟️ Tickets for our March 2027 Cneasú retreat and live podcast event are now on sale, with options to sponsor a ticket for someone unwaged: https://www.eventbrite.ie/o/cneasu-by-the-gluten-free-kitchen-company-76437028823

Thank you for continuing to support the call for answers, appropriate care and meaningful change.

Content note: the linked article discusses bullying, harassment and experiences of abuse.