The framework, developed by the HSE, aims to reflect patient concerns and transform how endometriosis is recognised and treated across the country.
Endometriosis is a chronic condition where tissue like that which grows in the uterus instead grows outside of it, sometimes around the ovaries, fallopian tubes, and pelvic tissues, resulting in considerable inflammation and pain.
Jennifer Carroll MacNeill. Photo: PA
The central principle underlying the framework is presumed diagnosis, meaning GPs and medical professionals must treat patients who report symptoms of endometriosis as if they have the condition.
“We’ve changed the standards to a presumptive diagnosis recognising that women are the best narrators of their own experience, the best narrators of their own pain,” Ms MacNeill told Newstalk’s Anton Savage Show.
“There are so very many including young girls including much older women like myself and everybody in between who have really not had the experience of being heard or being treated in a way that’s going to be successful for them.”
She continued: “Many women who have had many surgeries here that haven’t worked, women here who have exhausted the surgical opportunities here and have ultimately gone and travelled abroad whether it’s to Romania, to Poland, to the United Kingdom and got surgery that ultimately did work for them.”
The new care approach will span primary care to complex tertiary care. Moderate cases will be treated in five different specialist centres.
Three centres are already established in the Rotunda Hospital, the Coombe Hospital, and University Hospital Limerick, while two more are in development at University Hospital Galway and the National Maternity Hospital.
Describing the disease as the “sheer management of pain” in its most raw form, Ms MacNeill explained the extent of the suffering in women unlucky enough to have it.
The framework will operate on the presumption that patients’ endometriosis concerns are valid
Today’s News in 90 Seconds – Saturday, October 18
“It’s like additional cells cells that are […] just going wrong, spreading generally from the pelvis and it can go right up through their body, up through their diaphragm, up into their shoulders.
“I’ve met a woman who had it in her brain, in her eyes, and it just can take over a body and the pain is unbearable and we have to meet their need.”
Patients presenting with higher pain levels will have their cases expedited, Ms MacNeill said in a letter issued to GPs nationwide this week.
She said that there is “work to do” in ensuring Ireland has specialists with the sufficient skill set to provide women in the new framework with adequate support.
“We need to drive harder to make sure that we can meet every woman’s needin Ireland .
“We do have a need to do better international cooperation collaboration and training for our surgeons, our radiologists.
“This can be exceptionally difficult to see on an MRI and we do have a body of work to lift our standard to be one of the best in Europe instead of women leaving Ireland to get surgeries elsewhere.”