Ireland’s first national endometriosis framework launched

The HSE has published a National Framework for the Management of Endometriosis in Ireland.

The framework, which was launched today (Saturday 18 October), establishes for the first time a defined clinical care pathway for women and girls living with endometriosis.

Developed by the HSE National Women and Infants Health Programme (NWIHP), the framework reflects the voices of patient advocates and aims to transform how endometriosis is recognised and treated across the country.

Central to the model of care is the principle of presumed diagnosis, proposing that a woman presenting with symptoms should be treated on the presumption that she has endometriosis. This model acknowledges that women are the most reliable narrators of their own symptoms and pain and reduces delays in the management of symptoms as well as the overall impact of this disease on women.

The care pathway spans primary care to secondary care and complex tertiary care. Moderate cases will be treated in five regional specialist centres. 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. Complex cases will be referred to two supra-regional centres in Tallaght University Hospital and Cork University Maternity Hospital.

Joined at the launch by HSE CEO, Mr Bernard Gloster, and the Clinical Director of NWIHP, Dr Cliona Murphy, Minister for Health Jennifer Carroll MacNeill said: “Endometriosis has long been an under-recognised and under-treated condition, but progress is now being made in raising awareness and enhancing our services. The HSE, the Department of Health and the clinical community are working as one to improve in a dedicated and sustained way how we support and treat women with endometriosis.

“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.”

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 HSE will 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. 
• 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 is 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 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, the HSE 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.

Mr Gloster said: “While endometriosis care in Ireland has historically been challenging, it is encouraging to see patients, clinicians, advocacy groups and government come together to welcome the important progress announced today. As part of Ireland’s first National Framework for the Management of Endometriosis, we are making a commitment to improving access to surgical care for women affected by the condition across the country.

“Over the coming months, the HSE will deliver more than 100 additional surgeries, significantly improving access to treatment for those who have been waiting. To further expand capacity, we are recruiting an additional colorectal surgeon to support more complex procedures and setting up an Endometriosis Surgery Abroad Interim Scheme to operate in parallel with services in Ireland. This new scheme is a targeted response to the urgent need for timely surgical intervention for women with moderate to severe endometriosis, while domestic services are further developed and scaled up under the National Endometriosis Framework.”

Dr Murphy said: “This endometriosis framework has been the culmination of years of work by committed clinicians and advocates in this country. We are one of few countries who have such a document.

“The framework provides a structured approach to help clinicians provide quality clinical care for women dealing with this difficult condition.

“Much progress has occurred in this space, and this is a roadmap for future improvements. We hope to build on this framework to reduce diagnostic and wait times and raise awareness of the available services.”

The framework can be viewed here.