Marie Sherlock (Dublin Central, Labour)

I sincerely thank Sinn Féin for this detailed motion. When you look at the detail and the very specific calls that are in this motion, it behoves us all to look at how women, and particularly teenage girls and young women, are being absolutely failed in this country.

As I speak this evening, I think of the conversations I have had over the past four years with women who have had to muster the courage to ask me on their doorsteps to speak up for them. They have told me what they are going through. They have told me that their lives have been upended. Their work, education, friendships, families and involvement in sport have been upended because of a condition that few within the health service take seriously in this country.

When I read an article by the playwright Lisa Tierney-Keogh last weekend, I wondered if I should put any of my thoughts on the record because that gripping and devastating account of her life told it all about how women suffering from endometriosis have been failed in this country. She, and, of course, so many hundreds of others, have been continually gaslit. They have been told they are hypochondriacs. They have been dismissed. That goes on to this day.

There is a perspective in this country that the days of dismissing women are in the Ireland of the past. They are not. For so many women in the Gallery today, their daily lived experience in terms of their interaction with the health service is as has been described, and that needs to change.

To be fair, a lot has been said about endometriosis over recent years and some actions have been taken. However, those actions have been far too patchy and inconsistent to provide a comprehensive and proper service for all those suspected of suffering from endometriosis in this country.

I want to raise a number of issues this evening. The first regards the so-called distinction between mild and severe cases of endometriosis, and who determines that. We know that a diagnosis of endometriosis only happens when there is a surgical intervention to diagnose what exactly is going on within a woman's body. I have a real concern with the current model of care and current pathways to care. We know the GP will always be the first point of contact but I am concerned that women suspected of having endometriosis would remain within GP care. The reality is that for some people endometriosis is being contained by a form of contraception. A woman told me today that she was put on the pill at the age of 13 and told, "Away you go; you will be fine now." A mother told me that her daughter was put on the coil at the age of 16. Doing that contains the symptoms but masks the need for the comprehensive and fundamental treatment that is required. We know that it is not just about helping with the incredible and debilitating pain but is also about the long-term injury and damage to a woman's body with the ongoing effects of endometriosis as they get older. There is a reality here. We must ensure that if women are suspected of having endometriosis, they are directed into the specialist hubs that have been established.

It is welcome that we now have five specialist hubs, but the reality is that of the 50.2 whole-time equivalent positions, only 24.6 have been filled. Not only that, but for the Munster region alone, only one third of the staff are in place. I know that efforts are made to try to recruit accordingly but even those staff members in place on those multidisciplinary teams are not working full time in those hubs. They are also having to work in gynaecology, urology and the other areas in which they specialise. We need a full-time and dedicated set of teams across this country working on these services. To be frank, we do not have the required specialist level of care even in those hubs.

The other key issue I want to raise relates to the treatment abroad scheme. It is reckoned that approximately 100 to 150 women travel to Romania each year for specialist endometriosis surgery.

We know that there are women who go to other countries as well. Of course, it is all down to money as to who can afford to travel because of the transposition of the healthcare directive in this country. Effectively, you get the money back afterwards as opposed to upfront. There is another key issue here, and that is that the State does not even have a proper handle on who is travelling abroad for specialist endometriosis treatment. When we asked how many women are travelling for such care under the cross-border directive, we could get no answer because women are categorised under general gynaecology, pain management, urology, etc., meaning that the State has no true understanding of the number of women who are forced to travel every year. That has to change. We need a handle on how many women are forced to travel and how we can expect to try to look after them in this country.

The final point I will make is that this is not just about the health system; it is about the education system, the workplace and society in general in understanding what endometriosis involves. I want to recall one mother who contacted me. She talked about how this is obviously hugely debilitating, particularly for teenage girls. Her daughter had missed well over 20 days of school in her leaving cert year. This girl was very bright but had lost key days in her education. The decision was made by the family, with the specific encouragement of the school, to apply for the disability access route to education programme. After going through many hoops with a consultant, there was eventually a letter, a form, signed by the consultant confirming that this child, this teenager, had missed precious schooldays because of her condition. However, there was no definitive diagnosis for the condition because she was undergoing investigations, because they were waiting until she got a little older and because there would need to be a surgical intervention. They submitted the form signed by the consultant, but when it went to the Department of education, it was refused because there was no formal diagnosis. I find that absolutely appalling, that a civil servant could make a determination as to the health and well-being of a teenage girl who had just done her leaving cert against the very clear advice of the consultant. That is what is happening not only in the Department of education but right across workplaces in this country. Employers are not understanding because we have not spoken often enough about what is happening to women suffering with endometriosis, and that has to change. It has to change, not only through the conversations we are having here but also in the community. In the context of that specific example involving the Department of education, we have to ask what it will do to make sure that teenage girls going through this are properly looked after within the education system.

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