Women’s healthcare and endometriosis care
Whitmore highlights medical dismissal of women’s health concerns and limited specialist endometriosis care, including women travelling abroad. The Minister acknowledges the problem, points to presumptive diagnosis and expanded surgery, and says she wants more treatment available in Ireland.
The Members were all very well behaved this morning, in case our guests were wondering. I call Deputy Whitmore.
Comment on this
This week, a harrowing documentary about the medical gaslighting of women was broadcast by Virgin Media. It featured women who spent years in excruciating pain before eventually being diagnosed with conditions like endometriosis and premenstrual dysphoric disorder, PMDD. It featured women whose incredibly serious and debilitating healthcare concerns were repeatedly dismissed or minimised by doctors and women who had to travel abroad for surgery for endometriosis because the specialist care is just not available here. It is shameful that a country as wealthy as Ireland is still exporting so many women for essential healthcare. It is estimated that one in seven women in Ireland have endometriosis. That is 300,000 women and yet, many in the medical profession seem to have barely heard of it. How else can we explain why it takes a woman an average of 14 years to get a diagnosis? That is 14 years of not being listened to, 14 years of being patronised, 14 years of missed diagnoses and 14 years of pain, trauma and fear with hugely negative impacts on the lives of tens of thousands of women and girls all over the country.
I acknowledge the Minister has invested in women's healthcare and in endometriosis care specifically but we were at such a low base that any level of funding at this stage is just a drop in the ocean of what is required. The wraparound and surgical services that are needed are often simply not there when women eventually get a diagnosis. "Prime Time" recently featured a doctor, Dr. Rachel O'Connor, who was forced to take out an enormous loan and travel to Poland for her surgery. She was told if she had not had that surgery, she would have died. This lifesaving treatment is currently being denied to many women in Ireland.
The other related issue is the medical gaslighting women routinely experience. Women are told the agonising pain they are in is all in their heads. Women are told they are just hormonal or experiencing anxiety. Women are talked down to and patronised by too many medics. My colleague, Senator Patricia Stephenson, has done a huge amount of work in this area and she has a proposal she is hoping the Minister will take on. If any woman presents with the same symptoms three times in any 12-month period, her GP should reflect, review and rethink the case. The GP should reflect on what the patient is saying, review her symptoms and rethink by referring the patient, where appropriate, for specialist tests. This is guidance that was taken onboard in the UK in 2025. It is called Jess' Rule, named after a 27-year-old woman who unfortunately lost her life from cancer despite many consultations. There really is no reason why this guidance should not be rolled out here.
What will the Minister do to ensure women are not forced to travel abroad for lifesaving endometriosis care? Is she concerned about medical gaslighting for women? Will she introduce the three point guidance for GPs to reflect, review and rethink when women repeatedly present with the same or worsening unexplained symptoms?
Comment on this
I thank the Deputy for raising this really important issue. Let me answer them in a slightly different order. On medical gaslighting and how women are treated, let me completely acknowledge what the Deputy is saying. Let me completely acknowledge women have been treated differently in the medical system and that research that was done on men is applied to women in circumstances where that is not necessarily true. Let me bring in another area, heart failure, where women's presentation of heart failure is materially different to men. Let me compliment the work of Ken McDonald and the Irish Heart Foundation who have tried to drive awareness about this. We have a programme called Her Heart Matters which tries to identify that this is very different. That is a different example but another example of how medical presentation is different. I thank Senator Stephenson for the work she has done. We have invested €2 million for the first time into research in women's health through the Health Research Board. I will ask it to connect with the Senator on the work she has done and see how that fits in with the broader pieces of academic research that are being done to try to advance women's healthcare more specifically.
Deputy Whitmore raised endometriosis as her third point and she is so very right. She is so very right that the starting point was so low. How many women have I spoken to who have been suffering for 20, 25 and 30 years with chronic pain, not being understood, having to leave work, having a completely different fertility experience and having a totally different family life? I compliment the Deputy on her work and Sinn Féin on its work along with Labour. Everybody has raised this in different ways but that is why I brought women with endometriosis into the Department of Health on 1 September last year so we could hear directly from them and from their experience. We did it again in March. The most heartbreaking thing for me that day was looking at two young girls in their school uniforms who were already suffering debilitating pain as a consequence of endometriosis, which is not spoken about enough.
As a consequence, the CEO of the HSE and I wrote to every single GP to try to raise awareness that this impacts one in seven women. That is one in seven women, not one in seven people. It affects one in seven women and it is so important because this is so impactful. We introduced a programme to try to fund emergency surgeries abroad because it is a shame on me and everybody else that a doctor in our health system used her HSE salary and a loan to get emergency surgery in a different jurisdiction.
We have to fund that on an emergency two-year basis, but we are trying to develop the longer term surgical pathways. We have developed relationships with a specialist clinic in Bordeaux. We have developed a programme where our surgeons are training abroad, and we will have a continual series of fellowships for surgical training and endometriosis so that we never end up in this situation again. Meanwhile, we are trying to recruit specialists as best we can, such as colorectal surgeons to work alongside gynaecological surgeons.
I visited one of the super-regional centres in Tallaght, where a new surgeon is doing incredible robotics surgery. However, the Deputy is right; the crisis for women is now and they need those surgeries. We are trying both to address the immediate need by funding emergency surgeries abroad, and to develop a longer term pipeline. I know as well as every single other person here how much more we have to do on that. However, in the last 12 months, we have been on a different pathway, in terms of both awareness and care.
Comment on this
I thank the Minister for her response. It is clear she is passionate about this area, but I am afraid we are not moving quickly enough with this. Last October, the Minister announced €16 million in funding for endometriosis care and 65.5 new staff. As of September, only one of those staff was in place, according to a parliamentary question response I got in September, with one more being onboarded. There is still a huge way to go.
I can understand why as an emergency measure women have to go overseas because we do not have the capacity here, but women in Ireland are so sick and tired of being exported every single time our health service is not able to meet our needs. The first response we are given is to send us abroad. It is not the way to treat people, to take them away from their jobs, homes, communities and families. It is costly, it is stressful and there are language barriers. We need to be able to treat these women here. I also think a cultural shift is needed in the healthcare system. Women need to be listened to and believed, and our medics need to be trained to support them. This is very important, and that cultural shift has to come from the Government.
Comment on this
That is one of the reasons we made a presumptive diagnosis in the framework for endometriosis, so that the woman did not have to prove it and would be believed and listened to. Women are the best narrators of their own experience.
The cultural shift is really important. We have employed MISE, phenomenal advocates for endometriosis, to go into schools, workplaces and maybe the Oireachtas to talk about endometriosis and its impact. The Deputy is right; we do not want to send women abroad. I want them to get surgeries here, which is why I demanded that an additional 100 surgeries happen in that last quarter of last year to meet some of the need. We did 142, but that is not enough. There is still a need for specialist services. If I have a choice between funding a woman to go abroad or her not getting that surgery in Ireland, of course we are going to facilitate her going abroad to make sure she gets the type of specialist surgery we are trying to build towards.
We have also placed a level of priority on this whereby we will have an EU Presidency conference on 3 December to shine a light on this, because it is not just Ireland's problem. It is Germany's problem and France's problem. This is under-researched, underdiagnosed and undertreated right across Europe. On St. Patrick's Day, I visited a specialist clinic in Germany with the German health minister, again to shine a light on the issue. Even through the EU Presidency, we are placing a focus on endometriosis, which is necessary.