Government model of care for endometriosis patients 'one of the worst backward steps'

One of two supra-regional specialist centres giving expert treatment for endometriosis will be at Cork University Maternity Hospital (pictured). Picture: Denis Minihane

It could take 50 years to treat the number of women with complex symptoms of endometriosis under a new Government plan, a leading advocate has warned.

This devastating disease is estimated to affect one-in-10 women. The Department of Health launched a national model of care on Monday following a public consultation. However, advocate and medical scientist, Kathleen King, said the plans do not go far enough to address delays, including for diagnosis.

“They have heard, but they have not heeded the message. This move compounds the isolation, misdiagnosis and dismissal,” she said.

“These are the stories that keep me awake at night, I feel helpless to change this. The minister has the power to change this, but first, he has to listen and understand the needs of women.” 

The plan says a small number of women with more complex cases will require expert treatment in two supra-regional specialist centres. One will be at Cork University Maternity Hospital, and is expected to open before the end of this year, a spokesman said.

However, Ms King said evidence shows 20%, or one-in-five, endometriosis cases are considered as “deep endometriosis” and seen as complex.

“If we consider 200,000 women in Ireland, 20% of that is 40,000 patients with severe/complex disease,” she warned.

“If we have two specialist centres operating at a level of 20 cases a week over 40 weeks a year, to accommodate for annual leave and bed shortages — this is a potential 800 complex cases treated annually, it would take 50 years to treat the 'small number'."

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The plan projects some patients will require multi-disciplinary support but "the vast majority" will be treated in the community with GP assistance. Feedback she received this week indicates women feel this is not the answer. 

Ms King said GPs are overwhelmed with increasing workloads and face “chronic waiting lists for gynaecology” when they try to refer patients onwards.

“Women are not at the fore of this, I have been fighting for endometriosis patients for 25 years and this is one of the worst backward steps that I have ever seen,” she said.

“This is about saving money, denying women access to gynaecological services, laparoscopic diagnosis and surgical treatment of their endometriosis. It is back to gatekeeping services and treatments.” 

The Irish EndoMarch is in Dublin, March 26. Registration is open on Eventbrite.