ESAIS, patient voices and why we still need a national inquiry
Today, I contacted the Irish Examiner following its recent article about the ESAIS scheme. I raised concerns about the gaps in the pathway, the financial barriers facing patients and the importance of including experiences like mine in reporting.
I qualified for ESAIS and travelled to London, only to be advised that my case was too complex for the specialist’s team. I am still trying to find an appropriate multidisciplinary team.
What happens when a patient is approved to travel abroad but the team they attend cannot treat them? Who helps them find the next team? Who coordinates their care when they return home?
Affordability also needs attention. I had to find the money upfront to travel. Only my flights were reimbursed - my accommodation and travel within the UK were not. For someone on a low income, these costs are a serious barrier.
Approval does not automatically mean access to treatment.
I was diagnosed with stage 4 endometriosis in 2005. More than two decades later, after losing six organs through surgery, I still do not have a multidisciplinary team coordinating my care. I have not seen an endocrinologist publicly since 2015 and continue to pay privately while trying to access appropriate hormonal support and specialist assessments.
The consequences reach beyond healthcare. Delays in my care contributed to a housing crisis. After seven years on the housing list, I was finally allocated a council home in September 2024, but some basic housing needs remain unresolved.
I also raised concerns about groups being given media platforms to speak on behalf of patients. Advocacy work is important, and it comes with responsibility. Transparency matters, especially within our national charity. Patients deserve clear information about governance, representation, political engagement, safeguarding and how complaints are handled.
Bullying within patient support spaces must also be taken seriously. People seeking support should be able to raise concerns without fearing public shaming or exclusion. Independent patients and longstanding campaigners need to be heard too.
Today is also International Podcast Day, a reminder of why documenting our stories matters.
I returned to Kerry College in November 2024 to study radio journalism and podcasting, achieved a Level 4 distinction and launched my podcast in September 2025. Finding my voice has also meant creating space for others to share theirs.
Accurately documenting patients’ realities means listening to what happens after an announcement, a referral or an approval. It means recording the costs, the unanswered questions, the years of waiting and the impact on everyday life.
You can read my International Podcast Day article here:
https://doireannbarrett.substack.com/p/world-podcast-day-finding-my-voice
This is why I continue to call for a national inquiry into endometriosis care in Ireland. We need patients’ experiences heard, failures examined and accountability established.
Thank you to everyone who has signed and shared this petition. Please keep sharing it and encouraging others to sign. Our stories matter, and they deserve to be documented accurately.