Grace Boland (Dublin Fingal West, Fine Gael)
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87. To ask the Minister for Health the steps being taken to reduce the average diagnostic delay for endometriosis; the plans to introduce public awareness campaigns and GP training to support earlier intervention; and if she will make a statement on the matter. [52381/25]

Naoise Ó Muirí (Dublin Bay North, Fine Gael)
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97. To ask the Minister for Health for an update on the development of the national framework for endometriosis care; and if she will make a statement on the matter. [52187/25]

David Cullinane (Waterford, Sinn Fein)
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101. To ask the Minister for Health her intentions regarding the provision of comprehensive endometriosis services; and if she will make a statement on the matter. [52532/25]

Grace Boland (Dublin Fingal West, Fine Gael)
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Endometriosis is one of the most common women's health issues. Far too many women, including women among my family and friends, often endure chronic pain, fatigue, fertility issues and emotional distress. They often miss time at work and in education. They miss out on life generally. The average diagnostic delay is nine years. I know this is an area on which the Minister is focused. I would like to hear what she is doing to address the diagnostic delay and to ensure that our healthcare workers are fully trained and that our women are getting the healthcare and surgeries they need in a timely way.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I propose to take Questions Nos. 87, 97 and 101 together.

I thank the Deputy. Endometriosis has been under-considered by all of us, including the Department of Health and the HSE, but a significant body of work has happened in recent months. I am pleased to say that the national framework for endometriosis is now ready for publication. I am conscious that the budget is next week and we are trying to find the appropriate moment to publish the framework. It has developed and changed considerably, with significant additional patient voices now included. On 1 September, a patient voice forum was held in the Department of Health with 60 to 70 patients, comprising girls and women who were in difficulty or who had had difficulties and had successful surgeries abroad. I was also in attendance, as were the CEO of the HSE, the chief medical officer, the chief nursing officer, the head of the national women and infants health programme, NWIHP, and all of the senior clinical team. We were not there to participate but simply to listen to the women. We were there for quite a number of hours listening to their experiences. Their voices have directly influenced changes in the completed framework. I am glad we had that interregnum to enable their voices to come into that space and be heard. They have directly changed the language and some of the direction in the framework, as well as the communication of it. I am glad that opportunity arose and I thank each woman who shared her personal experience. Following the forum, I mandated an immediate action plan.

On 5 September, I received an initial plan from the Department and officials from NWIHP. On 15 September, the HSE CEO advised that a working group had been established to develop the plan. On 18 September, I updated those who attended the patient voice forum. On 22 September, I approved the revised national framework for endometriosis and a letter for GPs to go alongside that framework to help advance awareness.

On the details of the plan, the HSE will, crucially, increase the number of surgeries to be done this year. Some 600 surgeries were done in the first part of this year so you would expect 600 to be done in the second half of the year. I have required that an additional 100 surgeries will be made available in quarter 4 of this year and have provided funding for those surgeries. Nevertheless, I am conscious of the quality and nature of surgery, which is an issue we can discuss again, and the need to increase surgical skill everywhere. This condition is misunderstood or too little understood everywhere. The increase to surgical skill must happen internationally and also in Ireland. I have also provided funding for an additional colorectal surgeon. That position has been advertised. The role will be an important part of facilitating more complex surgical treatments.

The HSE is also providing additional support for women within the treatment abroad scheme. It has in the past been too difficult for women to access funding to get effective surgeries internationally. I have a little more work to do in that regard to look at the different international programmes that can be supported. I will update the House as soon as I can.

The HSE has created a different email address specifically to assist women with that service to try to streamline their experience within the HSE, which is important. An endometriosis group, with patient advocates and women's health task force members, has been set up. International endometriosis experts will now be invited to collaborate and engage with our own clinicians for better learning, diagnostics and surgical expertise. I yesterday approved a letter to all GPs, consultants and other relevant healthcare professionals to go alongside the framework, which is an effort to raise awareness of endometriosis. It is affecting many women, perhaps as many as one in seven. By that, I do not mean one in seven people but one in seven women. It is just as prevalent as other very common conditions, and should be as prominent in GP surgeries and should be understood by GPs. The HSE has also planned a GP practice update and a specific endometriosis awareness campaign.

John McGuinness (Carlow-Kilkenny, Fianna Fail)
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I inform Members that we are taking Questions Nos. 87, 97 and 101.

Grace Boland (Dublin Fingal West, Fine Gael)
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I thank the Minister for that comprehensive update. I mentioned the nine-year average diagnostic delay. Women have felt ghosted by their GPs. They feel like they have not been offered supports and have not been listened to. It seems that women are expected to put up with this intolerable, intense and chronic pain, and are essentially made to feel as if it is all in their heads. It is important that the Minister has taken the step to listen. The patient voice forum was an excellent idea. Women now feel heard by the Minister and the CEO of the HSE. It is important that the HSE continue to listen to these women.

In her response, the Minister mentioned that she has written to GPs and there will be a practice update. It is important that existing GPs will be properly trained and will understand. Far too often, women have been told that they have to put up with it, that it is in their heads and is not really happening to them. We have to move away from that outlook.

Naoise Ó Muirí (Dublin Bay North, Fine Gael)
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I thank the Minister for the update. Just to add to what my colleague Deputy Boland said, the patient voice forum is a really good step forward. It is incredible that it has not happened before now. Well done to the Minister for putting it in place. It is a model that should work in many different areas of the health service and I really welcome it.

I want to mention the area of diagnosis. As has been said, it is estimated that one in seven women has the condition, although it could be a lot higher. We owe it to women to put the systems in place so that we can get a real estimate. I know that will take time and I imagine it is a long-term initiative but how does the Minister see that happening? I presume it will be done through the GP network but that network has to be upskilled. GPs have a huge role to play in this.

The other issue relates to the two big specialist centres and the regional centres that have been set up in support of more moderate cases. What is the ideal pathway into those centres when all of this work is done and we have, hopefully, a well-running system? What is the pathway for a woman to get in there as quickly as possible?

Thomas Gould (Cork North-Central, Sinn Fein)
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Like the Minister, I have attended meetings and met women who have described how they have suffered. Their lives have been hugely impacted. Endometriosis has completely changed their quality of life. It has just been horrendous for them. It is good to hear that the Minister is listening to the patient and it is good to see that a framework has been put in place. I accept her sincerity in this but what I do not want to see is more suffering. These women have suffered enough. What we do not want to see is the HSE organising meetings and a lot of things being said but nothing happening. What the women have told us is that on the ground the diagnosis, treatment and support is not available in Ireland. That is what these women are looking for now. The Minister has outlined the work she is doing but she must deliver a patient-centred service. These women have suffered for far too long.

Separately, I want to thank the Minister and the Taoiseach. I brought the case of Aisling Thornhill to the attention of the Dáil a couple of weeks ago. Aisling is terminally ill with leukemia. A treatment for her was sought and I want to thank the Minister and the HSE because that treatment is in the process of happening. Aisling has only a short time to live but at least her family knows that everything possible is being done and they asked me to pass on their thanks. Hopefully the treatment will work but if it does not, at least we know that we have all worked together to try to support Aisling and her family. I again thank the Minister for that.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I thank the Deputy. Our thoughts are with Aisling as she goes through her treatment programme.

On endometriosis, I want to acknowledge the many different groups that have engaged with endometriosis sufferers and the importance of all of that advocacy work. It was a step change to invite women to come into the Department when many of them feel that the Irish health system has so badly let them down. It was difficult for many women to come in and do that but we had to bring that experience right into the heart of the Department, for it to be heard very loud, very proud and right at the centre of policymaking, and to have the HSE there as well. I acknowledge how many different people have already said that.

Of course, the most important point and what is so important in relation to the GPs is that women are the most reliable narrators of their own experience. I need to say it again: women are the most reliable narrators of their own experience, not just on this but on everything. I am absolutely sick and tired of women not being listened to and not being heard. Part of the change with regard to GPs is to operate on a presumptive diagnosis piece and to really listen to women about the complexity of symptoms that can be there that are not necessarily menstrual. There can be constipation, UTI and a whole range of things that are not necessarily presenting as a menstrual issue.

All the Deputies are correct in what they say about the quality of diagnostics and surgery. Many women are getting an inadequate service at present. I recognise that and indeed, they have told me that. For many women, because of the complexity of imaging and diagnostics and the complexity of reading MRIs, we do not have sufficient consistent capacity in this State to that reliably. That is an area that I am trying to develop, both in facilitating international experts coming here to provide additional training and longer-term fellowships and pathways for improvements in diagnostics. I also acknowledge the advances in AI that will facilitate this over time. I have been researching that as well but nevertheless, there is a significant body of work to do. I would say the same regarding surgeries and the complexity of same, including in relation to excision over ablation. I recognise that is a clinical issue but we must move to a model where we are capable of doing very complex surgeries. We do not want women to get to the point where endometriosis is right throughout their bodies. It is important to recognise that it is not simply a gynaecological issue. It can present right through the diaphragm. I have met women who have had endometriosis in their shoulders, eyes, brains, right through their colon and it is a very serious, painful condition. The pain management specialists and supports need to be improved, as does the quality of the surgical capacity. I do not say this to be critical of surgeons but it is just simply not there yet. I know that surgeons have leaned in to wanting to have better collaboration and fellowships with the centres of excellence that exist around the world, although there is not enough of that yet. We are certainly not there yet and we need no congratulations of any kind in relation to this. This is a body of work that has begun and that we will sustain and develop over time. We are trying to seriously improve things but there is a long way to go yet and I fully acknowledge that.

Grace Boland (Dublin Fingal West, Fine Gael)
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I thank the Minister. I really appreciate her focus on this and as I said, women are so impressed that they now feel heard having literally been told that it is all in their heads for so long. In terms of public awareness, sometimes women, particularly younger girls and women, do not necessarily know what to be looking out for when they are talking about endometriosis. This is particularly true for teenage girls and it is really important that we see a public awareness campaign as soon as possible.

We know from reports in the media that many women have actually taken themselves abroad for treatment, which is an intolerable situation. In that context, I appreciate the work the Minister is doing on looking into options under the treatment abroad scheme. It would be good to hear more from her on those options, as well as when we might see a public awareness campaign detailing the symptoms.

Naoise Ó Muirí (Dublin Bay North, Fine Gael)
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The Minister put it really well herself when she said that women are the best narrators of their own lived experience and their own pain. As long as she can keep that in the centre of all of the work that will be done around endometriosis, she will make progress and she will have the support of this House.