Tuesday, 17 December 2019
Saincheisteanna Tráthúla - Topical Issue Debate
I commend the Endometriosis Association of Ireland, whose representative spoke in the audiovisual room last Tuesday. I thank Kathleen King, Aimee Brown, Sarah Moloney and Jean Sutton. Their testimonies enlightened me and many others at the presentation.
One in ten women is diagnosed with endometriosis. That is nearly 135,000 women in Ireland. On average, it will take nine years to get a diagnosis. As a person who had very little knowledge of the condition, I find it truly shocking that so many women can suffer in silence and that it takes so long for a diagnosis of endometriosis. Some women have to travel abroad to Romania or Britain, not only for surgery but also for fertility treatment. Endometriosis has almost become the Cinderella of our health system. It is largely forgotten. I hope the Minister of State, Deputy Daly, can shine some light on this issue for the women who are suffering in silence.
There are many health issues neglected in this country and society in general, including that of mental health, but I was absolutely shocked reading the accounts and emails of many women following the briefing organised by Deputy Gino Kenny. There is a pattern in the attitude to women's health. I refer to the view that there is nobility in suffering. The long-suffering woman is a very strong motif in our history and religion but it is not acceptable that people living with chronic, debilitating pain would be dismissed by their doctors, that it takes several years to get a diagnosis and that they would be sent abroad for their healthcare. This is something many women said would not happen after the repeal of the eighth amendment but it is still happening and 155,000 women are suffering from endometriosis. Many go to Britain, or even Romania, for treatment. Let us be absolutely clear that we are dealing with a gender bias in medicine. The type of medical misogyny we saw with cervical cancer
is repeated with endometriosis. We need to establish a centre of excellence to diagnose women at very early stage and not dismiss them as just having period pain. Then they should get the treatment they need at a very early stage. I ask the Minister of State to do this.
I warmly congratulate my colleague, Deputy Gino Kenny, on hosting the recent briefing by the Endometriosis Association of Ireland in our audiovisual room. We heard striking testimonies from young women who have been treated appallingly by our health system over the years in terms of the diagnosis and treatment and this debilitating disease. As Deputy Gino Kenny said, one in ten women suffers from endometriosis. Approximately 155,000 women in Ireland have the condition. Of course, the average time for diagnosis is an astonishing nine years. I agree with Deputy Coppinger in this regard. It again highlights the fundamental issue of women's health outcomes and the gender bias in medicine generally.
The chair of the Endometriosis Association of Ireland, Ms Kathleen King, told us that Irish women are having more ineffectual surgeries than their counterparts, sometimes up to 20, and that there is a lack of specialists in the area. The women affected want much greater education on and awareness of the disease and menstruation in general. Young girls need to know that severe menstrual cramps are not normal and that medics need to investigate these issues fully rather than putting young girls on the contraceptive pill for years when the real cause of pain is not discovered until infertility issues arise later in life.
Endometriosis is a condition unknown to most people but those suffering from this chronic inflammatory condition know all too well its debilitating impact on their quality of life. Affected women live with pain, fatigue and risks to fertility. They also experience challenges in maintaining good mental health. The Endometriosis Association of Ireland states one in ten women experiences the condition. I compliment this small charity for its work in offering support to women and their families and also for highlighting this condition. It is a true example of patient activism.
The association has informed us that those living with endometriosis face significant challenges, such as gaining access to effective healthcare, receiving a timely diagnosis, poor public awareness and difficulties in the workplace. Developing patient-centred care is crucial for sufferers. I have a lot more that I could say on this but I hope the Minister of State will consider the concerns raised this afternoon and raise them with the Minister. In this regard, I echo the call for the establishment of a centre of excellence to deal with this disease.
I too am delighted to join my colleagues in speaking about this issue. I have been contacted by a number of constituents suffering from this debilitating chronic condition, including Aoife Halley, Rachel Ball and Aimee Brown. All these ladies have asked for our support. They are deeply frustrated. Their lives have fallen apart thanks to endometriosis and they feel they are hitting a brick wall when it comes to this Government and access to pain relief. That is shocking. They feel unheard and uncared for. The briefing last week in the audiovisual room, for which I thank Deputy Gino Kenny, was deeply moving and full of brave women. One of the ladies, Aimee Brown, contacted me again today with further details about the consultant who performed incorrect and incomplete surgery on her, with the direct result that her life has been changed beyond all recognition.
It is a scandal that these women and young ladies have to go to such lengths to get appropriate treatment and support. I am looking for an absolute and categorical assurance that the concerns raised by these ladies will be addressed without further delay and embarrassment. This is a shocking state of affairs.
I thank the Deputies for raising this important matter and bringing it to the attention of the House. I understand that it is within the scope of a general gynaecologist to diagnose and treat the majority of cases of endometriosis. Therefore, a GP referral to a gynaecologist is the standard pathway of care for the management of endometriosis in Ireland. This is similar to the pathway in place for the management of other gynaecological conditions.
Information provided by the HSE indicates that endometriosis can be a difficult condition to diagnose and treat because of the variation of presentations, which can affect the physical, and indeed the mental, well-being of patients to varying degrees. Treatment may include pain medications, hormone treatment and surgical interventions. The length of time it takes to diagnose endometriosis varies from patient to patient, because of varying, and sometimes ambiguous, symptom presentation. The Minister is assured, however, that the provision of training in the management and diagnosis of endometriosis forms an integral part of the specialist medical training programme provided by the Institute of Obstetricians and Gynaecologists.
The HSE national women and infants health programme has advised that the best way to help the majority of patients with endometriosis is to improve access to gynaecology services. As such, the programme has developed a plan to increase capacity and reduce waiting times for women awaiting general gynaecology, which includes patients with endometriosis. The plan aims to re-orient general gynaecology services to an ambulatory, or see and treat, model rather than the traditional outpatient referral model. An ambulatory care model is a more efficient and effective use of resources. It is also better for the patient as it reduces the requirement for multiple outpatient appointments. The programme will progress as planned in 2020.
It is also worth noting that a new women's health task force was established in the Department of Health in September 2019. The purpose of the task force is to improve women's health outcomes and women's experiences of healthcare. The task force is at an early stage of its work and is considering the full range of issues affecting women's health in Ireland. The task force will tackle a wide range of issues impacting women's health outcomes in Ireland and will work on these on a phased, prioritised basis. Each week, external experts in the area of women's health meet members of the task force in the Department of Health to inform its work. This initiative has been under way since the task force was established.
I understand that the Endometriosis Association of Ireland recently presented to members of the task force, highlighting this important issue that affects many women in Ireland. This issue will be considered by the task force alongside a range of other issues affecting women's health. Priority action areas will be decided by the task force in consultation with stakeholders, including the public. The first action of the task force will be to initiate a national listening exercise, inviting women in Ireland to share their experiences of, and solutions for, the health system, and this will commence in early 2020. More information on the task force is available on the Department of Health website.
It is welcome that, under the women's health task force, endometriosis will be reviewed and so forth. I think, however, that most women looking at this debate tonight will ask why it has taken so long to address this issue. There is a paternal narrative in healthcare and over the past two or three years, in particular, we have seen women being let down completely, not only by the health system but by society as a whole. If we can do anything as legislators or Teachtaí and hold out solidarity to our sisters today, it is to state that we will do as much as we can to try to put this on the national agenda.
The Minister of State seems to be saying this is very difficult to diagnose and, somehow, that is an excuse. Lots of things are difficult to diagnose and lots of illnesses take a long time to diagnose. It is possible to misdiagnose many things. It is not that difficult, however, to diagnose endometriosis in Australia and New Zealand, where there is much quicker diagnosis. Let us be honest. There has been an ongoing neglect of women's health in this country, which is a particularly backward country where the Catholic Church has dominated for many years. The Minister of State is saying that we should wait for the task force. That is not good enough, however, because women are not waiting any longer. We saw that with repeal and the gender quake taking place. Will the Minister of State meet these women and their representative association?
There are major delays in waiting to see a gynaecologist. Women can be waiting for up to two or three years. In August, the hospital consultants' association told us that 28,000 women were waiting at the time, 5,400 of whom had waited for more than a year. About a month ago, I asked Beaumont Hospital and the RCSI hospital group the number of full-time endometriosis excision specialists. I heard that there are only two, as far as I can see, in that hospital group. I welcome the point mentioned about the women's health task force, but if other countries can have centres of excellence for this appalling condition, then surely Ireland can do that as well, if the Government will work with the association.
It has been suggested to me that it takes nine years to be diagnosed here. I also wanted to highlight the difficulties that some patients are having in obtaining treatment abroad, and indeed payment when treatment has been obtained. This has been highlighted to me by a sufferer. I also urge the HSE to work with the Endometriosis Association of Ireland to devise a public awareness campaign to highlight the condition. I see it has very informative leaflets available already.
I am also unhappy with the reply because we need to deal with this issue. We need to take these women out of their suffering and support the organisation they have set up. I also ask the Minister of State and the Minister for Health to meet those women and listen to them. I was also unaware of this condition until I was contacted by these ladies. There needs to be a whole education campaign. It might take nine years to diagnose it in this country, but it should not. The Minister of State is telling us, unfortunately, that it does. We need to deal sensitively and sensibly with this and try to understand the pain and suffering these women, their families and loved ones are going through.
As I mentioned, by improving access to general gynaecology services, services for the majority of patients with endometriosis can be improved. The HSE's national women and infants health programme has developed a plan to refocus existing general gynaecology services towards an ambulatory model of care. This, it is anticipated, will not only improve capacity and reduce waiting times for such services but also provide a better service for women. The programme will progress this plan as a priority in 2020. In addition, the Department of Health is working with the HSE and the National Treatment Purchase Fund, NTPF, to develop the scheduled care access plan 2020, which will include gynaecology services.
I welcome the establishment of the women's health task force, as I mentioned, that is working collaboratively to identify key areas where we can work to improve women's health. Women's voices and experiences will be at the heart of the work of the task force. I encourage all interested stakeholders to engage with the listening exercise, which will commence early in the new year. Information and data gathered through this exercise, combined with other available evidence, will form the basis for future policy and action to improve women's health in Ireland. I will also pass on the invitation to the Minister to meet the group.