Lack of endometriosis framework sees women suffer 'untold damage'
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Health authorities have been criticised for failing to publish a long-promised national endometriosis framework, with campaigners saying that women are suffering “untold damage”.
The state’s plans for improving treatment of the debilitating disease were described in April as being “in the final stages” of development during Dáil discussions.
A national endometriosis framework would set out a defined clinical care pathway for women with endometriosis, ensuring they can access appropriate treatments in a timely and cost-effective manner.
However, Serena Massey, the chief executive of the Endometriosis Association of Ireland (EAI), was told just days ago by the HSE that a publication date remains unclear.
An estimated one in 10 women in Ireland suffer with endometriosis, which can damage their organs, cause infertility, and leave them in such pain they cannot work or go to school.
“As soon as we had that call (with the HSE), we said to them our members and anyone in the country who is waiting for this is going to be really disappointed, frustrated and angry,” Ms Massey said.
She emphasised a lot of work has been done already.
“It seems to be just paperwork and bureaucracy holding everything up,” she said.
“This framework is only a starting point. This will give us an idea of how many people are suffering. We would finally have some realistic numbers," added Ms Massey.
Reforms have already seen hospitals in Cork and Tallaght open endometriosis specialist centres. There are also five regional hubs in Limerick, Dublin (three), and Galway.
She remains very concerned for women who do not know where to go for help or who have unexplained pain and have not yet been diagnosed with endometriosis.
Doireann Barrett, from Kerry, has seen the disease change her life and continues to undergo treatment.
“This is our real life. I’m at breaking point now,” she said.
A Department of Health spokesman said the framework “is nearing completion with final stakeholder engagement in process”.
It will be published “as soon as possible” after some issues needing clarification were identified during the consultation phase, he said.