Patients Must Be Heard - Even When Their Experiences Are Uncomfortable

Behind this campaign is a person navigating illness, trauma and the personal cost of repeatedly asking to be heard.

In my latest Substack article, “I Will Not Be Silent for Someone Else’s Comfort,” I reflect on my experiences of speaking about harm, trying to resolve concerns and reaching the point where setting firm boundaries became necessary for my wellbeing.

📖 Read the article here:
https://doireannbarrett.substack.com/p/i-will-not-be-silent-for-someone

My experiences have strengthened my commitment to a national inquiry into endometriosis care in Ireland.

Patients need opportunities to describe what happened to them, how concerns were handled and what those experiences have cost them. That includes the impact on their health, employment, finances, relationships and trust in those they turn to for support.

A national inquiry must centre patients’ experiences and examine the systems responsible for their care. It must make room for people whose experiences are difficult to hear, including those who have lost trust or stopped engaging after feeling dismissed.

Alongside that inquiry, patient organisations and support communities must also be willing to listen to concerns about their own practices. Respectful complaint handling, clear boundaries and accountability matter wherever vulnerable people seek support.

I will continue campaigning while protecting my own wellbeing. I will also continue asking that patients be treated as people whose experiences deserve careful consideration.

Thank you to everyone who has signed, shared and supported this campaign. Please help us keep the call for an inquiry visible.

✍️ Sign and share our Uplift petition:
https://my.uplift.ie/petitions/justice-for-endometriosis-patients-launch-a-national-inquiry-in-ireland

🎟️ Find upcoming Cneasú events:
https://www.eventbrite.ie/cc/cneasu-events-2925279/

There is space for all our stories. Patients deserve to be heard.