Carol Nolan (Offaly, Independent)

I welcome this motion. It is timely and is there to address the frustration and chronic pain too many women have to endure unnecessarily. I welcome the visitors to the Gallery. It is great to have them all here. They should not need to be here because this is an issue that should have been addressed long before now. I certainly will be supporting the motion.

We urgently need to rapidly increase the level of support and the diagnostic pathways for women experiencing endometriosis. I know from the vast amount of correspondence and calls I have received from women in my constituency that this issue is having major consequences for women’s physical, mental and emotional health and that it is also creating real pain through fertility issues for many women. There is a lot of frustration, upset and anger. This motion should be the start of a change of direction. We need to send out a message of support and we need to change the way we do things. We need to ensure there are centres of excellence for women and that this condition is diagnosed in a timely manner, first of all, and that women are supported.

I would specifically like to see a strengthening of the multidisciplinary care framework with clear implementation timelines. Perhaps we could consider mandating the establishment of at least two fully staffed endometriosis centres of excellence within 24 months, each with a multidisciplinary team, including gynaecologists, radiologists, pain specialists, psychologists and fertility experts. While I note the motion did not specify annual funding allocations, we need to do that to ensure sustainability into the future. Additionally, embedding patient advocates in the planning process would ensure centres address real-world patient needs such as psychological support and post-surgical care. It is important that every approach we take to these matters, and to this condition especially, be patient-centred and informed by women.

I agree that we urgently need to expand and fast-track a referrals system with primary care training. While the motion’s proposal to end primary care’s diagnostic responsibility is critical, it requires a robust and timely replacement system. Perhaps we should look at mandating a nationwide fast-track referral pathway within 12 months to ensure women with suspected endometriosis are referred to specialists within four weeks of presenting with symptoms. The stories I am hearing indicate women are enduring this for years and years and it has greatly impacted their lives, and that is unacceptable. It is reasonable that the referral to specialists be a timely process. It has to be. That is something that needs to be improved on and can be improved on fairly quickly. This system should be supported by mandatory training for general practitioners on recognising endometriosis symptoms using tools like Endometriosis UK’s symptoms diary to standardise assessments. I am aware Australia’s National Action Plan for Endometriosis has cut diagnostic times by 30% through similar reforms, so that is a model that could be used here.

There is no doubt but that we need to introduce an enhanced public awareness campaign with target metrics, community engagement and direct engagement from the women who are affected. A fully budgeted three-year campaign launching within six months that targets schools, workplaces and community groups to educate on endometriosis symptoms and the challenges would be a start, and obviously would challenge the whole stigma. That would send out a message of support to many women who are not being given a diagnosis or support with their symptoms or who are being misdiagnosed in some cases. It would show we support them and we would send that message through a campaign.

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