Endometriosis supports needed

I was happy to support a Private Member's motion this week calling for improved supoorts for women suffering from endometriosis, including faster diagnosis and cutting edge treatments based on best practice.

The lack of adequate support for treating Endometriosis is another failure within our healthcare system.

It is estimated that up to one in ten women are affected by this disease, where tissue similar to the lining of the womb starts to grow in other places like the pelvic cavity, the overies, the tummy lining (or peritoneum), the bladder, the bowel and ureters. In situations where it has spread, it can even reach the diaphragm and lungs.

Symptoms include pain in the lower tummy or back, period pain, other pelvic pain, heavy bleeding, pain while having sex or going to the toilet, constipation, diarrohea, blood in the urine or general nausea. It can even include shoulder pain and left untreated can lead to serious complications including fertility problems, adhesions to organs and ovarian cysts, and other complications.

According to the Endometriosis Association of Ireland, approximately 155,000 women are affected by the condition. This which can impact a woman's wellbeing to varying degrees. While, as the HSE says, some women can continue to lead a normal life, for others endometriosis can have a signifcant impoact on their quality of life and have knock on effects on physical and mental health.

So why the delay in rolling out the Endometriosis Framework? Former Minister for Health Stephen Donnelly unveiled this welcome initiative during Women's Health week in March 2023. Admittedly he did say that the Framework, under HSE’s National Women and Infants Health Programme (NWIHP), would be implemented on a phased basis, with a model proposing that women with symptoms of endometriosis be treated on the basis of presumed diagnosis rather than a situation where it has taken an average of nine years for patients to receive a formal diagnosis, with negative healthcare outcomes.

There has been progress, but the progress has been too slow. The Framework announcement was supposed to ensure women would receive timely, effective treatment at the appropriate level of intervention. Yet as of April this year the Taoiseach stated that we still had 350 severe cases that had not been dealt with and at the end of last year there were approximately 760 women on a specific waiting list for treatment.

The Framework sets a defined clinical care pathway for women with endometriosis spanning primary care to local hospital care to specialist hospital care. In this context I weclome the supra-regional specialist centres at Tallaght University Hospital and Cork University Maternity Hospital and the five regional endometriosis hubs in the Rotunda, the Coombe, the National Maternity Hospital, University Hospital Limerick and University Hospital Galway. I also welcome that an additional 2 million is being invested this year out of an overall package of 5 million. But future funding and staff recruitment remain an issue, with only half the posts in Tallaght and Cork filled so far. More may be promised, but pending such a rollout we need to see funding provided upfront to women who need to access services available abroad under the national treatment purchase, or at least repayable within a short verification period.

We also need to see more awareness creation of this debilitating disease and to improve training and upskilling in this area for surgeons and other healthcare staff. Lastly, I agree with proposals to consider replacing the outdated endometriosis staging system with the Enzian score combined with the Oxford University Innovation Endometriosis Health Profile 30 questionnaire. Apparently a combination of the Enzian score and EHP-30 provides a more comprehensive assessment of endometriosis, giving a more through analysis of the extent of the disease and identifying and classifying cases of deep infiltrating endometriosis, for example, which helps in surgical planning, as well as delivering a more holistic asseessment of the disease and its impact on quality of life. I'm not a medical expert, but that sounds like common sense. I am calling on the Government to speed up the process and properly roll out the framework.

ENDS