On Wednesday, Minister for Health Jennifer Carroll MacNeill launched the National Framework for the Management of Endometriosis in Ireland, a first-ever clinical care pathway for Irish women living with endometriosis.

Endometriosis is among the most prevalent health conditions affecting women in Ireland, for which currently, there is no known cure. 

The exact number of women who have endometriosis is unknown but recent research estimates that it may affect as many as one in seven women.

PICTURED: Clinical Director of NWIHP, Dr Cliona Murphy, Minister for Health, Jennifer Carroll MacNeill, TD and HSE CEO, Bernard Gloster launch new endometriosis framework. Photo: 1IMAGE/Bryan Brophy

This new framework aims to modernise the way women with endometriosis are diagnosed and treated in the country, while there is currently an averaged seven year wait for diagnosis in Ireland.

Developed by the Health Service Executive’s (HSE) National Women and Infants Health Programme (NWIHP), the framework

proposes that a woman presenting with symptoms should be treated on the presumption that she has endometriosis.

The Department of Health has said that this model 'acknowledges that women are the most reliable narrators of their own symptoms and pain', and that the model will 'reduces delays in the management of symptoms' along with the overall impact of this disease on women.

The care pathway aims to treat endometriosis cases by levels of severity; moderate cases will be treated in five regional specialist centres, and complex cases will be referred to two supra-regional centres in Tallaght University Hospital and Cork University Maternity Hospital.

Three centres are already established in the Rotunda Hospital, the Coombe Hospital, and University Hospital Limerick, with two more in development at University Hospital Galway and the National Maternity Hospital.

Pictured: In 2021, the Coombe Women and Infants University Hospital opened Ireland's first endometriosis clinic. Photo: Maps

“Endometriosis has long been an under-recognised and under-treated condition, but progress is now being made in raising awareness and enhancing our services," said Minister Carroll MacNeill on the announcement.

“The completion of the National Framework for the Management of Endometriosis in Ireland is an important step in providing a clear pathway for the management and treatment of this often-debilitating condition. It puts women’s experience of their symptoms at the centre. It will raise awareness in the clinical community, reduce time to diagnosis, and ensure timely and effective treatment. 

“I am also committed to expanding our specialist endometriosis services, improving support services for women and promoting awareness of endometriosis, both among the public and within our health services," the Minister finished.

In addition to the launch of the Framework, Minister Carroll MacNeill has mandated several actions to accelerate access to care for women affected by this debilitating condition.

The Minister has said that the HSE aims to increase the number of surgeries over the coming months, and will carry out more than 100 additional surgeries for women waiting for treatment across all regions. 

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An additional colorectal surgeon has been advertised for recruitment by the HSE and will serve to facilitate and increase capacity for more complex surgical treatments.

The HSE has said that they are supporting women with access to treatment abroad. Information on how to apply, including a dedicated email address, is available at hse.ie/endometriosisabroad.

An Endometriosis Advisory Group, with membership from patient advocates and the Women’s Health Taskforce, has been established and will meet soon to advise on specific actions in relation to endometriosis.

To improve education and training, international endometriosis experts will be invited to collaborate and engage with our clinicians to improve treatment options, build expertise and share learnings. This will serve to build ongoing and enduring relationships with international experts in this field. 

In conjunction with the publication of the framework, we will be communicating with all GPs, consultants and other clinicians to raise awareness of endometriosis in their clinical assessments.

A national awareness campaign will also be developed around menstrual health, including endometriosis, early next year.

While many endometriosis campaigners will hail Wednesday's announcement as a step forward in the treatment of women's health in this country, there are those who have cast a critical eye on the implementation of this new framework.

Sinn Féin Senator Maria McCormack has welcomed the publication, and highlighted that there is still 'a long way to go' for improved endometriosis care in Ireland.

Pictured: Deputy Mary Lou McDonald and Senator Maria McCormack at a Portlaoise endometriosis meeting

"We are currently studying [the framework] closely and engaging with the many advocacy groups and independent patient advocates who worked alongside us to bring forward Sinn Féin’s Dáil motion on endometriosis in July," Senator McCormack said.

“While the framework finally recognises that care for women and girls with endometriosis in Ireland is not sufficient, there is a long road ahead to improve care and provide expert excision surgery in Ireland. 

“One of the most glaring issues in this framework is the over-reliance on a primary care model, which is not sufficient to meet the complex needs of those with endometriosis. It is deeply disappointing that this has not been addressed," the Senator stated.

“I want to acknowledge the voices of women who have contacted me since the publication of the framework.  They feel frustrated, hurt, and once again, unheard. My hope is that this is a live document that the minister will be open to amending if she truly wants to have a patient focused framework," she said.

“I welcome the introduction of an enhanced scheme to support endometriosis patients travelling for expert excision surgery, something Sinn Féin called for in our Dáil motion in July.  We have heard from thousands of women who have travelled to experts in Bucharest, Athens, and London and received the gold-standard excision surgery and follow-up care."

The senator also highlighted that some of the most popular care centres and expert surgeons are not included in the Enhanced Treatment Abroad Scheme.

Pictured: Senator Maria McCormack at an endometriosis awareness night in Portlaoise

"There is also a barrier faced in getting approval from an Irish consultant to sign off on this scheme, something many women highlighted was an issue when they tried to access care on the Cross Border Scheme," Senator McCormack argued.

“We need to see inclusion of the experts and centres women have travelled to – and continue to travel to – for care.  As things stand currently, the top centres for care remain accessible only on the Cross Border Scheme. 

“While I welcome the commitment to upfront reimbursement so that women can access vital treatment without financial hardship, ultimately, our goal must be a health system that provides timely diagnosis and treatment for endometriosis in Ireland.

“The success or failure of this framework and the ESAIS will depend entirely on its implementation and the real improvements it brings to the lives of women and girls living with endometriosis," the Sinn Féin senator finished.

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