5. Member Debate under Standing Order 11.21(iv): Endometriosis

Part of the debate – in the Senedd at 3:52 pm on 14 October 2020.

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Photo of Joyce Watson Joyce Watson Labour 3:52, 14 October 2020

I want to start by thanking Jenny Rathbone for bringing this debate forward today, because all too often women's health issues don't see the light of day. They don't get discussed and therefore they don't necessarily get due attention. So, endometriosis, as everybody has said, is an extremely debilitating disease, and it does then consequently have a devastating impact on women's health in terms of their quality of life and their ability to conceive. Both of those conditions impact on a woman's physical but also their mental health well-being.

There are, all too often, and we've heard it repeated here today, significant delays from when a girl or a woman first present with symptoms to getting a definitive diagnosis, and the average time is seven years. The symptoms are frequently put down to normal menstruation. It is not normal every single month of every single year to be in excruciating pain—pain so severe that you very often can't get out of bed, that you can't function, that you can't eat, that you can't sleep. That is not normal. There is nothing normal about it. In other words, it's something to be endured, and that cannot be right. It isn't right.

The other factor, of course, is that the timescale also means that by the time women realise what is going wrong, by the time that they've been listened to by the medical profession, it's too late for them to have children in many cases, because by that time—and it's been mentioned already—what might have happened to have helped and to have enabled an individual woman to have conceived has gone too far. There is no help once you've reached that point.

Women—and it has been touched on—will also suffer financial hardship and it can make it impossible for them to work for several days of each month. There has been a report by the endometriosis task and finish group, and it stated that there is a cost both to businesses, between $200 and $250 in absenteeism each year, but there's also a cost to the woman herself because when employers look at promoting women, when they look at things like reliability, and if they have a look at a sickness record that shows three or four days of every single month that there is an absence, they're not very likely in very many cases—because they don't understand what's going on—to be particularly sympathetic in thinking about affording them a chance for promotion. So, the effects, again, come back to the individual, the family and the business.

Management and treatment of the disease often require—and Dai said it quite well—a multidisciplinary approach because you can't simply just operate as a gynaecologist on endometriosis if you also have to look at the organs that it's attached to. That is why the operations are so long, so painful and so complex, because you'll have more than one person in that theatre performing that multidisciplinary operation.

But I did write very recently, in fact, this week, to Hywel Dda health board and I wanted to know about the pathway for patients with suspected or confirmed endometriosis. They informed me that they'd applied for funding from the women health implementation group to employ a specialist endometriosis pelvic pain senior nurse and they've also applied for funding for physiotherapy, psychology and pain services, in order to be able to offer a holistic endometriosis treatment plan. They've not yet had any confirmation regarding that funding, and I'd ask you, Minister, whether you're able to advise as to when they might receive an answer.

I've also been informed—and I quote, and it's been said already—that patients with severe diseases are referred to Cardiff and Vale UHB specialist endometriosis centre, and we've all heard already how difficult it is to get people onto that pathway. So, I absolutely support what Dai Lloyd has already said, that there has to be a clear pathway for people, and also for the medical profession so that they understand how they're supposed to direct people through the system and that the system isn't a further block to those individuals who are already suffering.

I find it really, really worrying that women—here we are, in 2020—are still somehow ignored, that because it's seen as an issue that only affects their periods, not their life or the life around them, all too often, that we are in this position here today. I know an awful lot about endometriosis because I've got two members of my own family, very close to me, who have suffered it, and I have seen what that suffering looks like, and I can tell you one thing now: it's not very pleasant.