A Pathway Is Not Enough Without the Specialist Care at the End of It

PETITION UPDATE | The work continues

I wanted to share an update with everyone who has signed, shared and supported the petition calling for better endometriosis care in Ireland.

Almost a year ago, I met directly with the Minister for Health and Department officials and shared my experience of more than two decades of navigating endometriosis care.

Unfortunately, my own healthcare situation remains unresolved and my health has continued to deteriorate.

I won’t disclose the full details publicly because some aspects of my current medical situation and correspondence with the Department need to remain private. However, I have now written again to the Minister asking a very important question:

What happens when a patient has engaged with the pathways available to her, including treatment abroad, but an appropriately experienced multidisciplinary team still cannot be identified to manage the complexity of her case?

This is bigger than my individual circumstances.

It goes directly to why this petition exists.

Having a framework is progress. Having pathways is progress. But a pathway only works when the expertise, capacity, coordination and accountability exist at the end of it.

Patients should not have to become their own case managers.

They should not have to travel from specialist to specialist trying to connect different parts of their healthcare themselves.

They should not have to financially exhaust themselves trying to find appropriate expertise.

And they should not have to wait until their health has deteriorated significantly before somebody takes responsibility for coordinating their care.

I have therefore continued to press for answers, accountability and access to genuinely specialist multidisciplinary endometriosis care.

There are parts of my own journey that I am simply not ready to share publicly at this point. What I can say is that the last number of months have reinforced my belief that this campaign must continue.

This was never just about me.

It is about making sure the women and girls coming behind us do not spend decades trying to navigate the same gaps.

Thank you to every person who has signed the petition, shared it, spoken about it and continued to stand behind this campaign.

We keep going.

Endometriosis patients in Ireland deserve specialist care, coordinated care and accountability - not simply another waiting list or another referral.