One Year On - And I Am Still Asking for Accountability
Today marks exactly one year since I met with the Minister for Health.
I walked into that meeting believing that, after more than three decades of navigating healthcare in Ireland, I might finally be reaching the beginning of the end of my medical nightmare.
Twelve months later, I am still waiting for the specialist multidisciplinary care I need.
I have travelled abroad.
I have navigated the Endometriosis Specialist Advice and International Support (ESAIS) pathway.
I have paid costs upfront and waited for reimbursement towards flights.
I have sent countless emails.
I have repeatedly explained an extensive and traumatic medical history.
And after all of that, I have now been told that my case is too complex for the specialist the Government has engaged to help train Irish medics in endometriosis care.
Yet instead of that triggering an urgent discussion about where a patient like me goes next, I am still waiting for a clear, funded and medically appropriate pathway forward.
One year ago, I told the Minister how serious things were
When I met the Minister for Health twelve months ago, I was completely transparent about the reality of my circumstances.
I told her I had one cent in my bank account and had to wait for my next disability payment.
I explained the financial consequences of decades of illness, surgeries and trying to access appropriate healthcare.
I explained the difficulties with my housing.
I explained what travelling internationally for healthcare was costing me.
I left that meeting believing that something was finally going to change.
One year later, many of those issues remain unresolved.
And last week, when the Minister was in Tralee to officially open the new €8 million-plus Women’s Health Hub, her diary team did not facilitate a meeting with me.
That is particularly difficult to understand when my case has already been brought directly to the Minister and her Department.
And today I am asking another question: where are our healthcare resources going?
On the same day that I reflected publicly on the year since that meeting, I also wrote about another figure:
€645,000.
That is the fine imposed on the HSE following an investigation by the Data Protection Commission concerning the storage and retention of sensitive paper records.
Records containing people’s medical and personal information were reportedly found damaged by mould and water, contaminated by animal droppings and stored in completely unsuitable environments.
At the same time, patients are constantly hearing about budgets, eligibility criteria, waiting lists, staffing shortages and services that cannot be provided.
Earlier this year, questions were also raised about the reported €127,000 cost of a 40-bike cycle hub at University Hospital Kerry.
And now we have a new Women’s Health Hub in Tralee representing investment of more than €8 million.
That investment in women’s healthcare is welcome.
But Kerry is still not one of the specialist endometriosis centres identified under Ireland’s National Endometriosis Framework.
So women in Kerry with complex endometriosis can still find themselves travelling outside the county - and, in cases like mine, outside Ireland - searching for specialist expertise.
Imagine if patients didn’t need those flights
These figures represent different funding streams. A capital investment in a Women’s Health Hub is not the same as expenditure on cycling infrastructure, a regulatory fine or reimbursement for medical travel.
But together they raise legitimate questions about priorities, governance, accountability and how effectively public healthcare resources are being used.
Imagine if €645,000 had instead been available for specialist medical education.
Imagine additional endometriosis training for radiologists so complex disease could be better recognised on imaging.
Imagine specialist education for gynaecologists, surgeons, nurses and physiotherapists.
Imagine multidisciplinary training involving colorectal surgery, urology, pain management and other specialties required to treat complex endometriosis.
Imagine some of that expertise being developed here in Kerry and combined with the infrastructure we have already invested more than €8 million in.
The ambition cannot simply be to become better at reimbursing patients for flights to leave Ireland.
The ambition should be to build an Irish healthcare system where fewer patients need those flights in the first place.
This is why I continue to call for an Endometriosis National Inquiry
My petition has never been solely about my individual healthcare.
My experience is part of a much bigger question about what has happened - and continues to happen - to people living with endometriosis in Ireland.
We need to examine diagnostic delays.
We need to examine access to appropriately trained specialists.
We need to examine regional inequality.
We need to examine the availability of genuinely multidisciplinary care.
We need to examine what happens when patients become too complex for the pathways available to them.
We need to examine the financial burden placed on patients who have to travel for healthcare.
We need to examine whether patient experiences are genuinely informing policy.
And we need accountability when systems fail.
Today, exactly one year after I sat across from the Minister for Health and explained the reality of my circumstances, I am still asking:
What happened after that meeting?
What actions were taken?
What commitments were followed through?
Why, after the ESAIS pathway failed to provide the specialist solution I need, was there no clear next step?
And most importantly:
If I am too complex for the specialist the Government has engaged to help develop endometriosis expertise in Ireland, where exactly does the Government expect me to go?
One year is long enough.
Thirty-plus years navigating these failures was already too long.
I am no longer asking for another acknowledgement email.
I am asking for action.
I am asking for appropriate specialist healthcare.
I am asking for a funded pathway forward.
I am asking for investment in the expertise patients desperately need.
And through this petition, I am asking for an Endometriosis National Inquiry so that these questions are examined beyond one individual patient’s experience.
Patients deserve accountability.
Taxpayers deserve accountability.
And people living with endometriosis deserve a healthcare system capable of providing the expertise they need.
Read both articles
📖 One Year Today Since I Met the Minister for Health
📖 €645,000: Imagine What That Could Have Done for Patients
https://doireannbarrett.substack.com/p/645000-imagine-what-that-could-have?r=2lilgm&utm_medium=ios
✍️ Please continue to sign and share the petition calling for an Endometriosis National Inquiry in Ireland.
Every signature strengthens the call for answers, accountability and meaningful change.