We move to item 5, which is a Member's debate under Standing Order 11.21, endometriosis—I hope I've pronounced that correctly—and I call on Jenny Rathbone to move the motion. 

Motion NDM7304 Jenny Rathbone, Angela Burns, Suzy Davies, Vikki Howells

Supported by Jack Sargeant

To propose that the Senedd:

1. Recognises the devastating impact of endometriosis which affects one in 10 women in Wales.

2. Notes that it takes on average eight years and 26 GP appointments to get a referral to an endometriosis specialist.

3. Calls for more research into the causes and possible cures for endometriosis.

4. Calls on the Welsh Government to ensure that schools make all pupils aware of what is a normal menstrual period and when to seek medical advice.

5. Calls on the Welsh Government to ensure that more endometriosis specialists are trained so that all women can have access to specialist treatment in Wales.

Motion moved.

Thank you, acting Presiding Officer. If men suffered from prostate in the way women suffer from endometriosis, we would not have waited this long to get this profoundly debilitating and invasive condition recognised and addressed. Now women have stopped suffering in silence, considerably more attention has been paid to endometriosis.

There are now three 'endowalls' in Cardiff. I'm unable to show you the one created by Jaimee Rae McCormack in Cathays, which was the first, but I invite you to go to my website to see that and other pictures of the EndoMarch by women and their families in Cardiff on the last Saturday in March last year, which helped educate the general public about what endo does to women. These public awareness campaigns are needed, because half the country has never even heard of endometriosis, even though it is more common in women than asthma or diabetes.

This debate is timely, because it is while we are scrutinising the new curriculum Bill. Listen to one girl's experience: 'When I was 13, I fainted in school from horrendous stomach pains. I was taken to A&E where they did blood tests and ultrasound. A doctor told me that everything looked fine on the scans so it was nothing to do with gynae. This happened regularly for four years. I would be rushed to A&E with the same pain, would get told it was nothing and I just needed to learn to deal with period pain.'

One morning it was so bad her mother took her to the GP and from there they did get a referral to a gynaecologist, and they finally, five years after that story started, got that diagnosis. There are thousands more people like this young woman, unaware that it is not normal to have constant pain in your lower abdomen, pain when you go to the toilet or have sex. 

So listen up, members of the Children, Young People and Education Committee scrutinising the curriculum Bill: menstrual well-being education must become an integral part of young people's journey to become healthy and active informed citizens. Girls and young women, boys and young men too, need to know what a normal period is, and, if it's not normal, where they can get help. The school nurse, the teacher, the attendance officer all need to know this too, as well as the GP and the gynaecologist.

This is not a new condition, nor is it particular to Wales, but it is unacceptable that it takes eight GP appointments to get referred to a specialist. It is unsatisfactory that some gynaecologists miss endometriosis simply because it does not show up on ultrasound.

Debbie Shaffer, a founder member of Fair Treatment for the Women of Wales, spent 26 years trying to get an accurate diagnosis, at which point specialist care was beyond her reach. Their research revealed that most GPs and local gynaecologists are not even aware that specialist centres for treating endo even exist.

The Welsh Government has grasped the nettle. In 2017, a task and finish group was set up involving all stakeholders, and its thorough report was delivered to Welsh Government in April 2018. In line with National Institute for Health and Care Excellence guidance, Welsh Government is providing funds for all local health boards to have at least one endometriosis specialist nurse, and one of their first tasks must be to provide endo awareness training for GPs. This is all good stuff, but at least one third of women with endo need complex surgery that only specialists can provide. As with most conditions, the longer they wait, the more difficult and expensive it is to treat. 

South Wales has the one and only Welsh endometriosis centre, in Cardiff. North Wales women are referred to Arrowe Park in Birkenhead. The Cardiff team has three brilliant consultant gynaecologists and Wales's only endo specialist nurse for the last several years, and is widely recognised as a centre of excellence. Gynaecologists come from across the UK to acquire the skills to run these specialist centres, which are now springing up across England, but not in Wales. In England, the money follows the patients. Tariffs per patient range from £5,500 to £12,000. In Wales, health boards still operate a historic one in, one out local agreement, which is absurd for operations that last six to nine hours. Last year, four in 10 of the Cardiff patients were from outside Cardiff and Vale University Health Board. In England, that would have generated between £300,000 and £600,000 to pay for complex, minimal access pelvic surgery. Instead, the tab was picked up by Cardiff and Vale health board. This is financially unsustainable. It's impossible to expand the service to meet the huge unmet demand unless it's funded differently.

And we have to guarantee dedicated theatre time to the three existing endo consultants. Being on the Heath hospital site, they are constantly losing their precious theatre slots so medical emergencies can be dealt with. And COVID has aggravated the very long waiting lists already well beyond the 36-week referral-to-treatment target. To tackle this, the task and finish group recommended the immediate establishment of a virtual south Wales endometriosis centre, across Newport, Swansea, Bridgend and Cardiff. That's over two years ago. To support this, the Cardiff endo consultants are keen to do theatre sessions at the Royal Glamorgan Hospital and elsewhere to increase the number of people with their complex surgical skills. At least three more specialist endo-gynaecologists are needed for a tertiary service that does not need to be on the Heath site.

These are complex issues, difficult to resolve in the middle of a pandemic. But to honour all the grass-roots campaigners who have raised the profile of endometriosis in Wales, we must ensure that all women in Wales who need it have access to an endo specialist centre.

I'd like to thank Jenny Rathbone for suggesting that we should hold this debate, because this is an incredibly important issue that does affect so many people. One of the points that Jenny made at the very beginning is that this is not simply a woman's issue, but actually it is very much something that affects the men who are in the lives of the women who have this chronic and debilitating illness.

I just thought I'd very quickly read out the definition for endometriosis, because not everyone's completely clear what it is or what it does to people. It is a condition where tissue that is similar to the lining of the womb starts to grow in other places, such as in your ovaries or your fallopian tubes, and it can affect women of any age. Now, the constituents and friends of mine who I know who have got and had this awful condition report the most excruciating pain throughout their lives. They often have to go and have multiple operations to try to get rid of this excess tissue that's growing everywhere. And it doesn't just grow; it actually knits together and fuses with other parts of your organs—so organs fuse together, particularly your bowel to your stomach, your ovaries. And it can have an extraordinary effect on your life going forward.

I'm just going to read an excerpt from one of my constituents, before I actually talk about a particular piece I want to cover. This young lady had an urgent laparoscopy; she had to lose an ovary, part of her bladder and part of her bowel. She has chronic pain in her pelvis and throughout the whole of her body. She has daily migraines. Getting out of bed is an achievement. She has to take painkillers every four hours. And she says, when her periods come around each month, it is a living hell, that endo is a disabling disease that's ruined her life, and, from what she's read online, it's ruined many other lives, and that her hopes and her aspirations have been ruined by this illness. And she goes on to talk about the effect it's had on her relationships. It's ruining her chances of being able to have a family.

And so one of the points I thought that Jenny made that was so absolutely crystal clear is that we need to look at this in the round, because this does affect more than just the individual who has it. People with endometriosis very often get post-traumatic stress disorder, and can often suffer from sepsis, which, as we all know, is an absolute killer. Not only does it ruin people's chances of being able to have children, but, of course, it makes things like IVF even more difficult to have success with, because those tubes are blocked, they are pretty much ruined. And IVF is a dodgy business anyway—you don't have guaranteed success—and so people with endometriosis really do have the cards stacked against them.

I touched earlier on multiple surgeries, and let's really think about that. You're having to go in maybe once a year, maybe a couple of times a year, to basically have parts of your insides cut away in order for you to be able to stand up straight, to sit down without pain, to be able to wee, to be able to poo, to be able to have a period without being in excruciating agony. Wow—that's a future that must strike most people as a fairly grim one going forward.

And, of course, then we come to sex. Sex and intimacy—what we all crave for in good, healthy relationships. That becomes very, very difficult to have, and it affects the men in the relationship as well, because they don't want to think that they might be hurting the person they love. They don't know how to approach them, when is a good time, because of this awful, awful pain. And from what the women who've talked to me about this have said, just taking a couple of paracetamol doesn't cut it. 

So, I've taken part in this debate because what I'm asking for is for there to be more of a drive to help to find some kind of really sustainable pain relief, and, above all, a way of being to cut the incredibly long waiting list to be able to be diagnosed. Jenny said— and she's absolutely right—too many people are written off as having fatigue: 'Yes, you're having a bit of a heavy bleed this month; don't worry dear, you'll be all right.' These women are not all right, and they actually need to have sympathetic doctors who really understand that this is a major issue that has long-term effects and can in fact lead to people having to lose all or part of their bowel function as well. So, it leads to irritable bowel; it leads to all sorts of other issues that are related to the soft organs in the lower part of our abdomens. 

So, Minister, if I was going to ask for a couple of take aways from this debate, it would be to have a long, hard look at how we can actually have shorter waiting lists throughout Wales, and that there might be more guidance given to specialists and to GPs that this is a real issue, that it affects not just the person who has it, but the families around them, and that it should be treated with the respect that we accord many other conditions. We just feel that endometriosis is 'just one of those women's things', and has been left slightly to one side. Thank you for your time. 

I'm pleased to support this motion. I just want to say a few words paying tribute to the persistence of my colleague Jenny Rathbone in striving to ensure that we can debate this topic today. It's such an important issue. As has been said, endometriosis affects one in 10 women in Wales, and that means 160,000 women in Wales can expect to be affected by this cruel condition. Tissue will grow and attach itself to the organs in their pelvis, causing irritation that can lead to considerable pain, pain in the pelvis, back, leg, groin—intense pain during periods, during sex, using the toilet, just going about daily life. This can impact on the ability to work or the home life, as debilitating pain can make even common activities difficult. This pain can lead to fatigue, depression, infertility, or even, as a BBC report noted last year, suicidal thoughts.

However, knowing the true scale of the condition can be difficult. Some women just stick with the pain, desperately trying to manage, self-treating, or perhaps, as Jenny Rathbone has previously mentioned, not realising just what they are facing. Even if someone has taken the step to speak to their doctor, endometriosis can be underdiagnosed or misdiagnosed, resulting in women not being able to get the right help. It can also be incredibly difficult to access specialist help, a point captured in the second point of today's motion. Point 5 offers one solution to this, calling on the Welsh Government to make sure enough endometriosis specialists are trained to meet the needs of the nation. And I am pleased to see that the Royal Glamorgan Hospital in Llantrisant, which serves so many of my constituents, is being considered by specialist consultants as a centre for further surgery. This is allied to the research that needs to take place to deepen our understanding of the causes of the condition and also the most effective interventions, as point 3 in the motion sets out.

We know that there can be particular challenges amongst teenage girls in accessing treatment. This raises the potential of an untreated condition causing a lifetime's impact. Our fourth point sets out the possible solutions to tackle this by raising awareness through ensuring schools make all pupils aware of what is a normal menstrual period and when to seek medical advice.

As I close, I just want to reflect on the impact of the current coronavirus pandemic on women affected by endometriosis. Anyone receiving treatment or waiting for an appointment is likely to experience delays or cancellations. If you're waiting for a consultation, this is likely to be done remotely. Endometriosis UK have issued a stark warning that because most surgery will be regarded as non-urgent, it will be cancelled or reissued or subject to a greatly increased waiting list. I'm pleased that the charity is working closely with the Royal College of Obstetricians and Gynaecologists to monitor this situation. But today's debate offers a timely reminder that we cannot forget about the women whose lives will be changed by this condition.

I hope the Senedd will support the sensible steps that we outline so that we can do all we can to ensure that those women are in turn supported to the best of our ability. Thank you.

I'm very pleased to be able to take part in this debate and indeed support all parts of the motion. Can I start by commending Jenny Rathbone in setting the scene and explaining the issue in the full detail that this complex matter merits?

As has been mentioned, endometriosis is a condition where the lining of the endometrium—the lining of the womb—parts of it start to grow outside of the womb. We don't quite know why actually, but it starts to grow in other places, like the ovaries, fallopian tubes, bowel, bladder and other parts of the pelvis. And its effects can be devastating—surprisingly common, as we've heard, but the effects in some women can be devastating in terms of chronic, debilitating, severe pain.

Now, we all get pain from time to time, and when you're in the middle of a painful episode of whatever, we are usually reassured by the knowledge that it's not going to last that long, be it joint pain, toothache or whatever. It is a totally new level of debilitation to suffer from pain that is so severe that you cannot see a way out of it because it tends to go on for months, weeks, years. 

There's a relationship to the time of the month, in that it tends to be worse at the time of the period, but not always so. That's why there is a challenge to making the diagnosis in the first place, and it's not always period-related symptoms either. Yes, there's a chronic severe pain, but you can also have symptoms like constipation and diarrhoea when the endometriosis particularly involves the bowel. All of this can produce a huge impact on the woman's life and on the lives of people all around her, as we've heard: on relationships, on the ability to have a baby, on employment prospects. So, there are huge societal costs to not managing endometriosis effectively.

We certainly do, as we've heard, need more than one large, multidisciplinary tertiary specialised provision dedicated to endometriosis in Wales. The Cardiff unit is excellent, but it's the only one. And there's the devil's own challenge, from a GP point of view, trying to get women with endometriosis seen in secondary care in the first place—there has to be a level of severity. So, it's very difficult to get people seen early on in the process before they develop any severe symptoms. And sometimes, when women have severe symptoms, it is then also the devil's own challenge to get them seen in secondary care as well. With those women who have a complex type of endometriosis that involves multiple organs, really getting seen in Cardiff is the only way forward because it's not just a problem for gynaecology—it's a problem for those other parts of the anatomy as well. It's a problem for colorectal surgeons, it's a problem for urologists, bladder surgeons as well—it's not just a gynaecological issue, which is why we need those advanced tertiary multidisciplinary centres.

All in all, I think there should be a dedicated all-Wales endometriosis pathway, from presentation—from when the woman has the problem—to primary care, through secondary care, through to tertiary care. There should be a dedicated, badged pathway, and our specialised nurses have a prominent role to play in that.

But also, from the very start I think it does need to be part of education in the curriculum Bill, as Jenny Rathbone mentioned at the start. It needs to be part of menstrual education, what is normal for girls and women to have, and boys and young men need to know that as well so that there is empathy when these situations come along, because endometriosis needs to be considered whenever a woman has severe period pain, particularly when it's coupled with infertility issues. It should be right up there in diagnosis and it's not at the moment, sometimes not from the woman's point of view and certainly not from primary care's point of view, and occasionally even secondary care. Severe period pains, combined with inability to get pregnant, should be a warning sign.

But, all in all, in drawing my remarks to a conclusion, can I commend Jenny Rathbone and others who are supporting this motion? This motion deserves to succeed and we deserve to have an improved specialised service for our women with endometriosis, but also coupled with improved education at the start of menstrual life. Diolch yn fawr. 

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.

Thank you very much, Jenny, for bringing this forward. I think it's one of those debates where people will be called 'brave' for speaking out. I think 'spilling your guts' is actually going to have a little bit more of a literal meaning in the rest of this debate than others may be comfortable with.

Joyce talked about the economic effect on women, but I think it's worth bearing in mind as well that our health and social care systems are primary employers of women in Wales, and by far the majority of unpaid carers are women, and if one in 10 of those disappeared on a rolling monthly basis to care for themselves whilst in the throes of an endometriosis episode, there'd be a pretty big gap in the number of people available to look after our cancer patients and other dementia patients and our mental health patients, let alone our own families.

When I was a young woman, I'd never heard of endometriosis. My closest friend knew what it was, because she'd had it pretty much from puberty—diagnosed much later, of course, as you might imagine—and I now think what a terrible friend I was, because I never really asked her what was happening to her. I never asked her about how much she lived in dread of her period, how she coped with the indignity of flooding, how she stayed awake when she would have been anaemic and exhausted from that excruciating pain we've already heard about, how she even managed to put one foot in front of the other, and what it was like, some months, to bleed for longer than you didn't.

Roll forward some decades, and let's think of my former member of staff; I have her permission to mention her. She has a degree, she has a Master's, and was only ever able to work part time because of the effects of endometriosis and its treatment. She had all the above symptoms. She was told she would have difficulties conceiving. Early menopause was introduced as an attempt to treat this, a sort of chemical castration for women, with all those delightful symptoms exaggerated for being artificial. Mercifully, that was stopped, but now she has frequent migraines and anxiety to add to everything else. Like all chronic conditions, there is a spectrum of intensity in how it is experienced. However, the level of ignorance about endometriosis is staggering, considering its prevalence, which is why I draw your attention to parts 4 and 6 of this motion.

During the last Assembly, we had a debate on whether page 3 girls should be banned, and I was speaking in it. In the morning, I had to visit a newsagent to do a media piece, taking two young work-experience people with me. And not for the first time, I was having a bad period. 'My age', I thought. 'Perimenopause', I thought. 'I'm into my late 40s; this is how it's going to be for a while.' So, I didn't really think about why I needed sanitary protection the size of sofa cushions changed several times an hour. I didn't ask why the toilet bowl looked like a butcher's bucket. When my heart was going like the clappers and I nearly fainted in the lift, I put it down to not having time to eat and running around with these teenagers; not acute anaemia. And it wasn't the first time: 'Maybe I should go to the doctor, but when and why? Surely this is something that all women go through it a certain age.' But the time did come on that day to do something, because when I was standing here in this Chamber, talking about women being treated as sex objects, the contents of my womb and God knows what else were flooding down my legs and pooling around my shoes.

The doctor asked me if I had a history of ovarian cancer in the family. That didn't really make me feel much better. And several months later, after a completely unrelated minor operation, the surgeon casually mentioned to me that I had stage 4 endometriosis, and I quote: 'This is a mess, and because of your age, it's probably not worth operating.' Nicely put, but confirmation, at least, of the source my pain. Members, this condition is nasty, and apart from coping with these symptoms, my own experience is still common. Women will tell you that this disease makes them feel dirty, secretive, anxious about where the nearest loo is—toilet closures really are a feminist issue—it crushes their libido and wrecks intimacy, as Angela pointed out. And women will also tell you that despite describing all the symptoms I've just horrified you with, GPs don't think endometriosis when they hear them, and that's the point in our motion; point 2.

I would also say without criticism that specialists don't always have many tools to combat this disease. There's still too much they don't know, and as we've heard, there's no pathway for treatment. Now, women want to be well. One in 10 of us push through this stuff, as Vikki said, month after month, feeling like hell, meeting social expectations because talking about this wrecking ball is just too embarrassing. Minister, I want you to understand that this is not a cinderella disease; it is a real ugly sister of a disease—a real ugly sister—and I hope this debate captures your attention.

Thank you, Suzy. The Senedd at its best, if I'm allowed to comment from the Chair. I now call on the Minister for Health and Social Services, Vaughan Gething.

Thank you, acting Deputy Presiding Officer. I am grateful to Members for tabling this important debate today. As we've heard, endometriosis is a condition that affects a significant number of women. We've also heard about the profound impact it can have on the lives of people affected and their families, with the descriptions of acute and chronic pain, the use of strong analgesics and the impact that has on a women's day-to-day tasks and function, and the lead to the feelings of isolation and a loss of control.

It is true, as I acknowledged, that it can take a significant number of referrals, in primary and secondary care, before referral to an appropriate form of treatment for the condition is made. And a diagnosis can be difficult because sometimes the symptoms vary, and can be similar to a range of other conditions. The symptoms can be similar to pain caused by irritable bowel syndrome and pelvic inflammatory disease, for example. In additional, painful periods can be mistaken or normalised by family members and medical professionals alike, as we have heard in today's debate, and endometriosis is often more common within the same family.

We know that, in spite of efforts to change things, there can still be a lack of understanding of endometriosis amongst some health professionals, and again, we've heard that in today's debate. And current provision certainly does, on a number of occasions, fall short of what we should all expect. That has resulted in delays in diagnosis and suboptimal care on some occasions, with the obvious impact on the quality of life of the women affected. Health boards have the responsibility to deliver high-quality gynaecology services. It's vital they provide robust and effective care, including earlier diagnosis, for the management of endometriosis in accordance with NICE guidance.

Now, following the previous report from Fair Treatment for the Women of Wales, we established a task and finish group to review endometriosis services in Wales, chaired by Richard Penketh—and the work of that group has again been referred to in the debate. It was made up of a multidisciplinary team of clinicians, academics and, crucially, patients. The task and finish group considered a number of sources, including NICE guidance, research and evidence produced in Wales, before publishing their report in 2018. NICE guidance provides a clear pathway in listing the symptoms of endometriosis, and directs healthcare professionals as to when a women should be referred to a gynaecology service for an ultrasound or a gynaecology opinion. After the task and finish group's report, my officials wrote to health boards seeking assurance that services are being delivered in line with NICE guidance.

It's important that serious health issues affecting women are dealt with effectively and appropriately. That lies behind the reason that I directed the women's health implementation group, chaired by Tracy Myhill, the chief exec of Swansea Bay health board, to consider the recommendations of that task and finish group's report, together with its work on vaginal mesh and tape. Now, the women's health group was established to provide strategic leadership to ensure an all-Wales approach to break down barriers and join up pathways across our service. And, of course, women's health should be managed in the community wherever possible, with the minimal need for intervention.

Now, with the motion, the Welsh Government will be abstaining, but is broadly supportive of the motion and its objective. And certainly we'll be carrying on improvement work, but we don't support the specific proposal and the wording around more research into the causes and cures for endometriosis, as, unfortunately, there isn't a cure per se, in the normal sense of the word, and it's not a preventable condition. What is important is that health boards provide a service model that enables much earlier diagnosis and appropriate referrals to a suitably qualified health and care professional with the full range of skills necessary, amongst other things, to be able to remove endometriosis lesions. That should be combined with high-quality pain management and physiotherapy support to enable better outcomes. 

On Joyce Watson's particular point—and others raised some points about the waiting times, not just in Hywel Dda but more broadly across the country—the work of the women's health implementation group was paused by the COVID pandemic; the implementation group will be meeting, though, in November, to consider health board proposals for improvement. So, the answers that Hywel Dda and other health boards are awaiting should not be long in coming. 

Last year, we published guidance on living with persistent pain in Wales. The guidance aims to provide advice to those experience persistent pain, their families and their supportive health and care professionals. The guidance also includes actions on what you should expect from your healthcare provider as a person living with pain. This guidance should help women affected by endometriosis to manage their levels of pain, to be better able to live their lives.

The task and finish group's report did, however, recommend research in a number of other areas, including the development of an effective symptom awareness tool, evaluation of the follow-up processes after surgery, a multidisciplinary approach to symptom management, development of educational resources, and ongoing monitoring of patient outcomes to understand if we are being more successful. I agree that that is something that should be taken forward by the women's health group, and also Health and Care Research Wales, to help identify the availability of research funding for these endometriosis-related questions. Again, the women's health group should consider this action through their endometriosis-specific work.

In relation to the recommendation regarding schools and ensuring that pupils are made aware of normal menstrual health, I agree with many of the comments that were made. Thinking back to my own experience as a teenage boy, growing up and going to school, this was never mentioned in anything other than very mechanical terms, as far as boys were concerned. The new curriculum for Wales guidance is clear that growing up has a critical impact on learners' health and well-being. So, schools and other settings need to consider how to support learners to understand and manage these developmental changes, as well as how those changes affect learners in a range of different ways.

The health and well-being area of learning and experience recognises that there are a range of conditions that affect learners that they need to be able to recognise, understand, and seek help for. Within the new curriculum, schools are given the flexibility to cover puberty and menstruation at a developmentally appropriate stage, and to provide learners with the knowledge and confidence to seek support and help deal with the physical and emotional changes that occur through life. The education Minister commissioned a relationships and sexuality education working group to include a range of stakeholders and practitioners. That group is focusing on developing an RSE code and supporting guidance that will form part of the new curriculum framework. I expect that group to consider issues such as menstrual well-being as part of their work. The women's health implementation group is working to produce learning resources around menstruation to better equip young people to understand what constitutes a normal period, and when to seek medical advice. This is an important piece of work and consistent with one of the major recommendations from the endometriosis task and finish group. That stressed the importance of early education about endometriosis and menstruation. 

The task and finish group's report stated that a key factor that causes delay and poor outcomes for women with endometriosis is that there are a significant number of gynaecologists who do not consider that they have the necessary skills to excise endometriosis lesions completely. Most gynaecologists will instead undertake diagnostic laparoscopy and then offer medical management; or, alternatively, ablate the endometriosis lesions. These approaches result in repeated treatments and surgery. I want to reiterate that health boards need to emphasise the appropriate pathway to enable early diagnosis before specialist intervention is required.

I am concerned that a condition that affects around one in 10 women is currently considered something that can only be treated by specialists. I expect the women's health group to consider this issue, together with the Royal College of Obstetricians and Gynaecologists and Health Education and Improvement Wales, to discuss the appropriate level of training provided to gynaecologists to enable them to deliver the necessary intervention when a woman presents to them with early endometriosis. Specialists should only be required when the disease has progressed too far and becomes more complicated. I will be writing to health boards to remind them of their obligations, and to seek further assurance that gynaecology services will offer the full range of treatments required by their population.

To conclude, I want to reaffirm my commitment, and the Government's commitment, to all aspects of women's health, and in particular to care for those women whose lives are affected by endometriosis, and their families and friends. As I've outlined, we are working to increase levels of awareness of menstruation in young people, and to enable girls to seek medical advice when necessary and at the earliest possible stage. I expect health boards to plan for and deliver the full range of gynaecology services required to comply with NICE guidance. In finishing, I would say this: if the same number of men lived with the same discomfort that endometriosis causes, then I do not believe that the health service response would need the further improvement today that is still plainly required. We have made some progress in the last three years, but we have a great deal more to do.

Helen Mary Jones to reply to the debate.

Diolch yn fawr, acting Deputy Presiding Officer. Can I just say how grateful I am to Jenny Randerson, as many others have already said, for tabling this important motion—[Interruption.] Rathbone—I've gone into some kind of time warp. I'm very sorry, I've got my Jennys muddled up. I do apologise. But I'm really grateful to Jenny for tabling this and to everybody who has supported it. This is such an important issue and we've had so many really important contributions today.

I can't possibly respond to all the points that have been raised, but I hope that people will forgive me if I begin with Suzy Davies, because I think that that level of openness and honesty about how these issues affect our lives is so important. And I think that when women such as ourselves, who have got roles in public life, who are seen, perhaps, as being successful and confident—if we talk openly about the impact of these kinds of issues on us, it will raise awareness and it will help empower other women to raise the issues in their own lives. So, I'm personally very grateful to Suzy for being so open and honest with us today. I think you were right to say, acting Dirprwy Lywydd, that this is an example of the Senedd at its best.

So many issues have been raised: the impact—and Angela talked about this—of the physical agony, and many other people talked about that; the impact on our lives. I think Joyce Watson's point about the impact on women's working lives and the long-term economic effect that that can have over a whole lifetime, and others have raised that.

Jenny began, of course, talking about the importance of awareness, and our motion is very clear about that. And before I mention others, I want to come back, if I may, to some of the Minister's comments. Now, it's very welcome that he acknowledges the issues with the number of referrals and the length of time it takes, and he emphasises the local health boards' responsibilities, and, of course, that is the case. But I'm glad to hear him commit today to writing to the health boards once again, because whatever has already been said, it's clearly not getting through. He tells us that the NICE guidance does give a clear pathway. Well, we've heard from Dr Dai Lloyd that that's not a pathway of which he, as a practising GP, was aware and was able to work with and deliver. So, there's obviously a lot of work to be done there in terms of awareness of that pathway. And I would suggest to the Minister that he may want to ask the women's health group to examine that pathway and see if it's fit for purpose here in Wales, or if there are other things that need to be done.

I'm very glad that the Government is broadly supportive and understand that it's the usual practice for them to abstain, but I was a bit disappointed by what the Minister said about research, because there is a clear need for more research and he referred to that later in this contribution. And he says that there is no cure now. Well, of course there is no cure now. You know, decades ago, there were no cures for all sorts of illnesses that we cure now. And this comes back to the point that many speakers have made, and the Minister referred to it, indeed, himself: if this was an illness that affected and debilitated men in the way that it affects and debilitates women, we would've had that research and we would have a cure.

And the Minister refers to the living with pain guidance. Well, I have to tell the Minister today that women suffering with this condition do not want their pain managed, they want it gone. And we desperately, desperately need more research to enable us—. Because there will be a physiological cause for this and where there is a physiological cause, there will be the capacity to intervene. And the Minister said himself that if this was a condition that men were suffering from, we would've had something done. Well, we need the research to have that done, and we don't just need research into pain management, though that's important in itself.

So many really powerful contributions—Vikki Howells talking about the scale of the problem; Angela Burns, as I've said, talking about the way that it affects women's lives; Joyce again highlighting some sort of family experiences, the financial hardship. So many important messages coming out of the debate today. I'm glad to take from the Minister's contribution that he acknowledges that there is more work to be done. What I would say to him very, very clearly is that the cross-party group on women's health will be on the case with this. We will be following up the commitments that he's made, and where we feel that he needs to go a little bit further, we will push him. Because as we've heard from Suzy's contribution and as I know from the experiences of a very, very close friend of mine, this is not a condition with which women should be asked to live. We need a cure.

The proposal is to agree the motion. Does any Member object? [Objection.] I will defer voting under this item until voting time.

Voting deferred until voting time.