Fe fyddwn ni'n symud ymlaen nawr at y ddadl fer, ac mae dadl fer heddiw i'w chyflwyno gan Huw Irranca-Davies. 

Diolch, Llywydd. Can I just check, as I'm joining you—as I've got a bug—remotely, can you hear me okay?

Yes, we can hear you. I'd just ask you to pause a second whilst the Chamber rearranges itself or some people leave and we get some quiet here. Yes, okay. Go for it. 

Diolch yn fawr iawn. This is Endometriosis Awareness Month, so let me begin this debate by thanking the many women throughout Wales who have contacted me over the last few days and weeks to tell me their personal stories of the challenges they've faced with the diagnosis and treatment for endometriosis. And my thanks also to those campaigning organisations that include people with direct lived experience, such as Endometriosis UK and FTWW, Fair Treatment for the Women of Wales, who've met us here in the Senedd and in virtual meetings, and they've provided us with further information in advance of this debate. And also organisations like the Royal College of General Practitioners, the Royal College of Obstetricians and Gynaecologists, and Plan International, who've lent their authority to the menstrual well-being campaign. And finally, my thanks to colleagues for their widespread support from across the Chamber, and especially to Jenny Rathbone, Joyce Watson, Jane Dodds and Jack Sargeant, who will be speaking, if you allow, as part of my time allocation this evening, Llywydd.

Daeth y Dirprwy Lywydd i’r Gadair.

So, why am I speaking today, when women can and do speak powerfully on this themselves? It's because men also need to be willing to champion women's health and endo too. This can't be put into the box of 'too difficult' or 'inappropriate' or 'too sensitive' for men to engage with. It is our families and our friends, our wives and our daughters, nieces and aunts, who need all of us to speak up with one voice, and that's why I'm really glad to speak up today, alongside my other colleagues in the Senedd.

Endometriosis affects at least one in 10 women, girls, and people assigned female at birth. Yet, it takes on average nine years—nine years, currently—to diagnose endometriosis. One woman, who shared her story with me, tells me of diagnosis with endo in 2015 after nearly 20 years of painful, debilitating periods; three years of fertility issues; of GPs repeatedly refusing to refer the condition to specialists; suspecting endometriosis; and having eventually to seek private treatment. She is, by the way, one of those organising a petition to Jack Sargeant's committee, which is already 6,000 strong and growing. She told me, 'The majority of patients you speak to are having to fight to access care, and even when they do, the wait times are huge. And even though the endo nurses'—she says—'are a fantastic resource, they don't have enough specialist surgeons to refer patients to, and they can't discharge us, as this is an ongoing chronic illness.'

Others who've contacted me describe how they feel they've been subject to what they call medical gaslighting, and how the support varies so much from area to area. Powys in mid Wales, by the way, have been particularly highlighted by some for special concern. And the stories can be harrowing. One woman has told me of the devastating impact endometriosis has had on her life: how she is under multiple consultants, including endometriosis specialists, colorectal consultants, urologist consultants, pain management and general consultants; how she has had 15 surgeries for endometriosis, including having her large bowel removed, leaving her with a permanent ileostomy, a stoma bag, a long-term catheter, which will soon be a urostomy, a second stoma, due to her bladder failing, a sacral nerve stimulator, and a radical hysterectomy leaving her in full-blown menopause at the age of 28. In desperation, she has spent thousands on private surgery and treatment. She says, her quote, 'This disease devastates lives. It's debilitating, relentless, and incredibly life altering.'

I've heard similar stories from my own constituents. I was totally floored by the scale of medical and social and relationship and personal and financial impacts this can have, if it is not spotted early and diagnosed and treated effectively. And therein lies the way forward: early identification and diagnosis, and the availability across Wales of a wide menu of treatment and care and support before the condition progresses. We know that many ideas are being considered as part of the women's health plan, but here are some of the proposals from the women facing these challenges daily and from the campaigning organisations.

Firstly, the endo nurses are a great innovation, but they're not widespread enough, and it seems that each health board is doing completely different things. There needs to be equal access to services and provision across the country no matter where you live. Secondly, all women with endo should be able to access an endo nurse, or a similar person with specialist knowledge of endo, if they have any questions, regardless, by the way, of whether they plan to go to NHS or private or a mixture with their treatment. Understanding, for example, all the different hormone treatments and surgery options is a minefield, and consultants have limited time to discuss these things, including the risks involved. So, support groups, facilitated by an endo nurse, or a similar expert, that women could attend across Wales, would be an absolute godsend. And health boards need to work together more, and share information more efficiently. Endo treatment can cover specialists in many health boards and trusts, including in England, so the timely and effective sharing of patient data and joined-up treatment is critical.

We really need to implement in full the recommendations of the endometriosis task and finish group report from 2018, and this included that knowledge of menstrual health must be embedded within the education system, and resources must be developed to support this for the whole of Wales. Now, we have had a big step forward in 2021, with mandatory menstrual well-being education included in the new relationships and sexuality education code—part of the new Curriculum for Wales. That's good. So, we now need to ensure that menstrual well-being education is implemented thoroughly.

Endometriosis needs to be made a priority for the training of GPs, and for ongoing continuing professional development. Too many have told me of the lack of understanding, or sometimes what is seen as gaslighting by GPs and others. And this knowledge should include less common symptoms, such as skeletal pain and discomfort, and promote the benefits of a wide range of treatments, including pelvic physiotherapy, and understanding the treatment for vaginismus, as well as other gynae issues too.

Secondary care must be involved in implementing the recent National Institute for Health and Care Excellence guidance, strengthening the care pathways for women. Referral pathways to tertiary care for all of Wales must be clarified and enforced as a matter of urgency, and the information be available for clinicians and patients. And tertiary care capacity must be increased and adequately resourced. We have to also support the full implementation of the NICE guidelines on endometriosis diagnosis and management in Wales, as laid out in the endometriosis task and finish report. Some work has been done and is under way to implement the NICE standards, but there is more work to be done. And, Minister, we need current endometriosis care capacity to be assessed again and addressed, in line with the recommendations of the endometriosis task and finish report.

The Royal College of Obstetricians and Gynaecologists published a report last year—the 'Left for too long' report—that found that, as of December 2021, gynae waiting lists in Wales have increased by 62 per cent since the start of the pandemic. The lengthy waiting times can be partly attributed to the lack of specialist services for endometriosis in Wales, so we need that strategic planning to ensure there are sufficient specialist endometriosis centres in Wales, given the prevalence of the disease and the current waiting times for diagnosis and ongoing care. And we need greater capacity to unblock the backlog from COVID.

So, look, I'm bringing this debate today for all those brave women across Wales who've told me their story, including, I have to say, my niece, who's been waiting for well over a decade, since she was a teenager, for exploratory treatment for possible endo. She only had her MRI last month. She told me, 'Only 15 years later have I finally been listened to. I had a 20-minute phone consultation with a consultant. I cried, because I felt listened to, and my symptoms finally validated. I've now had the MRI scan and I'm on the waiting list for a laparoscopy.' Or another who wrote to me and said, 'My daughter's seven years old and I don't want her generation to come up against the same difficulties myself and many others have had to.'

So, for all those, the one in 10, we need to build on the steps we've taken, but we need to do better and go faster. As Carly Crocker—with a shout out to her, as founder, chair and group leader of Swansea and Bridgend endometriosis support groups—tells me, 'Although great changes have been made, we've got to go so much further.' So, Minister we look forward to your response after we've heard from other voices in this Siambr, and from right across Wales. Diolch yn fawr iawn.

Well, much progress has been made, but there's still a hell of a lot to do. Why is it, when 1.5 million people in the UK suffer from endometriosis, we do not know what causes it? So, there's an awful lot of research to be done, by both the expert patients and the clinicians.

Last week, I chaired an online discussion with a panel of experts, including two very experienced consultants—Nahid Gul, a surgeon, and David Rowlands, a gynaecologist—both with a specialist interest in endometriosis, both training in minimal access surgery, including endo surgery. Together, they're building the team required to operate three diagnostic units and a surgical centre for the population served by Betsi Cadwaladr University Health Board. There's another specialist team being developed in Swansea, which is taking the load off Cardiff, which, until now, has been the only secondary and tertiary unit in Wales.

The specialist endo nurses are improving the education of GPs and gynaecologists, so that women no longer have to wait an average eight years to even get diagnosed. For many women, endo dominates their lives and, on the EndoMarch last Sunday, I met Karla Edwards, whose endo severely restricts everyday activities most of us take for granted. But modern telecommunications enable her to be part of the international research team, headed by Dr Nezhat, the most experienced endo surgeon in the world and founder of the worldwide EndoMarch. His endometriosis risk app helps women identify endo faster. And, in Hungary, endo warrior Adrienn Salamon has developed a menstruation app called Lucy, with the gynaecologist Dr Bokor. These apps won't cure endometriosis, but they help women advocate for themselves at medical appointments, where people are being gaslighted.

Most treatments involve hormones or invasive surgery to keep endo at bay. Nobody knows why it has developed, and it doesn't cure them. Interestingly—

Jenny, you need to conclude, please.

—in Hungary, rehabilitation treatment using thermal springs, physiotherapy, breathing techniques and abdominal massage is available to Hungarian women. They are judging the success of it at the moment on the fertility rates that are achieved by women who have great difficulty, obviously, in getting pregnant.

Jenny, you need to conclude because you've used more than your time.

Much more needs to be done. Thank you very much.

I want to thank all the women who've given and shared their stories, and the experts who have shared platforms with us. And I want to talk particularly about Powys Teaching Health Board, and what we've been told is that none of the visiting gynaecology consultants specialise in endometriosis or have an interest in the condition. That's a serious statement, actually. So, those people have to travel to other Welsh health boards and over the border. And, okay, we can't have things everywhere, but the problem here is that it's become a postcode lottery, and we can't have a condition where it affects one in 10 women, where those women are telling us that it's a postcode lottery, first of all, in getting to see a specialist, even knowing where those specialists are, and what treatments are available. And the concerning thing for me, whilst the nurses are excellent, on the webcam that we were on the other day, the endometriosis nurse in Swansea said the GPs didn't know she existed. So, I think there's some work to do there. Thank you.

Thank you very much to Huw for bringing this short debate, and I really do want to thank others here who stayed in the Siambr, of both genders, and across all of the parties. Thank you for staying with us and listening to this because it is appreciated.

I just want to also touch on the fact that, where I live in Powys, there are no specialist services and we do have to travel across the border. In north Wales, the nearest endometriosis specialist centre is currently in England, and while arrangements do exist for cross-border referrals, they are hard to secure. Hopefully, in Betsi Cadwaladr in the future, they will include plans for surgery on endo in the next integrated medium-term plan.

Just for those of you who don't know the effect that it can have on people's lives, my husband actually works with somebody who has endo, and he describes that, on a daily basis, she is in absolute agony, sometimes unable to stand. There is very little for her and no treatment, but she continues to come into work and she continues to get support. But what that person needs, and what we need in Wales for all women, is the ability to have both the referral, the treatment to come as quickly as possible, and the ongoing support. Diolch yn fawr iawn.

Can I start by thanking Huw Irranca-Davies for bringing forward this important debate today? I also pay tribute to campaigner Beth Hales who started a Senedd petition on endometriosis in Wales. Campaigners like Beth are raising the profile of a condition that impacts so many people, yet still is widely not recognised or understood. As Huw and colleagues have alluded to, it's far too difficult for sufferers to get a diagnosis, and clearly that needs to change.

Presiding Officer, I spoke earlier in the Commission questions about my ambition to see the Senedd as an endometriosis-friendly employer, but that's exactly the type of scheme that the Welsh Government should be pushing through their social partnership approach. As Beth said to me on the steps of the Senedd handing the petition over—and in closing, Presiding Officer—endometriosis is not just a health issue, it's also a social justice issue.

Galwaf ar y Gweinidog Iechyd a Gwasanaethau Cymdeithasol i ymateb i'r ddadl. Eluned Morgan. 

Diolch yn fawr. I'm really grateful to Huw Irranca for introducing this incredibly important topic for the short debate today. I hope you get better, Huw. Thank you very much for highlighting the difficult cases that you have. I think it's absolutely right that it's not just women who are leading the charge on this—it's really important that men understand how this impacts on so many women's lives.

March is Endometriosis Action Month, and I welcome the opportunity to highlight the challenges women continue to face, and to reiterate my commitment to deliver changes to the way healthcare is provided here in Wales, because for too long there have been deep-seated and entrenched inequalities in the healthcare provided to women. These inequalities present themselves in a multitude of ways, including how women's experiences and concerns are viewed and symptoms acted upon. This is particularly so for issues and conditions exclusive to women.

Endometriosis is a chronic condition affecting one in 10 women. Whilst it's most commonly active from puberty to menopause, its impact can last for life. The exact cause of endometriosis is the subject of medical debate, but its effects are clear. It occurs where cells similar to the endometrial cells lining the womb are found elsewhere in the body, where they should not be. These cells continue to menstruate monthly, but there's no external flow, and that can cause inflammation, scar tissue, fertility issues and significant pain, which can at times be entirely debilitating, as we've heard.

For many women, endometriosis can be difficult to diagnose and can take years to be accurately identified and treated. Endometriosis effects women from all social and ethnic backgrounds, and whilst there are several common symptoms, the extent of the condition and the range of severity of its symptoms varies considerably between individuals. Sadly, despite the prevalence of endometriosis, evidence suggests that it takes on average nine years to receive a diagnosis in Wales. This often follows numerous visits to doctors and hospitals, during which symptoms may not be recognised, or in some circumstances are even dismissed. For many women, particularly those experiencing endometriosis symptoms from a young age, they may not realise that what they're experiencing is not normal. This first step of believing women, recognising and acknowledging severe menstrual pain as possible endometriosis, should lead to appropriate investigations without delay.

At the heart of discussions about waiting times, there are women who are often suffering in silence, whose lives are being profoundly impacted. Nothing illustrates this more than the experience of a women's health advocate who is supporting the work that we're taking forward, for which I'm truly grateful. It sounds very similar to the example you gave, Huw. I think you gave an example of 20 years. Well, it took this particular woman 23 years to receive an endometriosis diagnosis. Her symptoms and concerns were repeatedly dismissed by doctors as being the result of stress or of a low pain threshold. She was told her concerns were simply in her head and a product of depression and anxiety. Yet, despite these incorrect labels, no referral to mental health services took place. The severity of her symptoms and the uncertainty that resulted from a lack of appropriate clinical care and support had a significant impact on her personal life and almost resulted in her losing her job. That's one woman's experience, but it will sound very familiar to far too many women.

Women make up half the population, yet historically they've been disadvantaged by a lack of research and data about conditions, including endometriosis. This has constrained our collective understanding of the disease, our ability to quickly and conclusively diagnose its presence, as well as offer prompt and effective management and treatment. Endometriosis may be—

Minister, will you take an intervention? 

Yes, okay. 

Thank you very much, health Minister. The signs and symptoms of the condition you describe very well. Endometriosis is a condition that involves all the organs; it's not only the uterus—it's the fallopian tubes, it's the bladder, it's the bowel. So, it becomes really vague to know about it, and it needs a team effort. Thank you for giving me the intervention. 

Thanks very much. I guess that's part of the reason why so many people are misdiagnosed or not diagnosed, because it is quite difficult to understand that. That's why I think training for doctors, for physicians, is critical. 

Endometriosis may be suspected due to an individual symptom history or through scans, but the invasive surgical procedure called laparoscopy is currently the main way to confirm that symptoms are due to endometriosis, and allows for surgical procedures to relieve symptoms and complications. Expertise and capacity are being developed across Wales to address the need for such services. There's also a clear need for further research into more rapid diagnostic approaches for endometriosis, so it can be identified sooner in its course. 

Early treatment with hormonal manipulation is highly effective in reducing pain and complications, including surgical and fertility problems, but this, of course, depends on early diagnosis. It's with regret that the health service's response to the pandemic, whilst necessary, has negatively impacted access to care in Wales and across the UK for a range of conditions, including endometriosis. Sadly, difficult decisions have only added to the protracted timescale for diagnosis and treatment already being experienced by women. Health boards are responsible for providing their local populations with high-quality care and support for the management of endometriosis. 

Wales has two fully accredited endometriosis specialist centres—University Hospital of Wales and Singleton Hospital—as well as an endometriosis specialist centre at the Royal Gwent Hospital awaiting accreditation. I understand there are some moves afoot in Betsi as well. There are, of course, areas of good practice across Wales, but not all clinicians have the confidence and expertise to correctly identify and attribute endometriosis symptoms, as well as provide ongoing care and support. So, there is a clear need for improvements in training, skills and awareness, as well as access to specialist advice and treatment, where that's required. 

In recent years, there have been several important developments here in Wales in advancing the support and care available to those experiencing endometriosis. We had the task and finish group that was established. Following the receipt of its report in 2018, the women's health implementation group was created to take forward its recommendations. That led to endometriosis nurses and pelvic health co-ordinators being appointed in each health board. They actively spent time with patients in clinics and liaised with their multidisciplinary teams to improve endometriosis service provision across Wales. 

A dedicated website has been developed for patients and clinicians. Endometriosis Cymru includes 'living with' stories from Welsh people and a symptom tracker, which has the potential to become a diagnosis tool for patients and clinicians to speed up intervention for early diagnosis and treatment of endometriosis. Additional resources have been created, such as the Bloody Brilliant website, to provide evidence-based guidance and help normalise conversations around menstrual health.

Despite these developments, the current waiting times for diagnosis and treatment and the powerful stories we all continue to hear from women right across Wales suffering from endometriosis demonstrate that much more needs to be done. I'm committed to delivering improvements for these women, and that's what we're working towards.  

Dwi wedi bod yn glir bod rhaid i ni newid y ffordd rŷm ni'n darparu gofal iechyd i fenywod a merched yng Nghymru. Mae angen gwneud hynny fel eu bod nhw'n gallu cael y gofal yn brydlon, fel bod yr NHS yn ymateb i'w dewisiadau a'u anghenion nhw, ac fel bod gwaith ymchwil a datblygu yn adlewyrchu profiad byw menywod a merched. A dyna pam ein bod ni yma yng Nghymru wedi ymrwymo i ddod â’r holl faterion pwysig yma at ei gilydd mewn cynllun iechyd menywod sy’n cael ei ddatblygu a’i berchnogi gan ein NHS yma yng Nghymru. Rŷn ni eisoes wedi cymryd camau pwysig tuag at greu’r cynllun.

Ym mis Gorffennaf, gwnes i gyhoeddi’r datganiad ansawdd iechyd menywod a merched. Mae hwn yn nodi beth mae disgwyl i’r NHS ei wneud i sicrhau gwasanaethau iechyd o ansawdd da i gefnogi menywod a merched drwy gydol eu bywydau. Mae disgwyliad clir yn cael ei roi ar fyrddau iechyd i sicrhau lefelau priodol o ofal, triniaeth a chefnogaeth i fenywod sy’n profi endometriosis i gael gofal mor agos â phosibl at gartref, heb amser aros sylweddol.

Yna, ym mis Rhagfyr, gwnaeth cydweithrediad y gwasanaeth iechyd gyhoeddi adroddiad ar ganfod sylfeini cynllun iechyd menywod. Mae hwn yn adrodd o safbwynt mwy na 3,800 o fenywod a merched o bob cwr o Gymru, ac yn tynnu sylw at yr hyn sy’n cael ei wneud i weld y bylchau yn y ddarpariaeth ar hyn o bryd. Mae’r ddogfen yn nodi cyfleoedd i wella gofal iechyd menywod, gan gynnwys mynediad at gymorth a thriniaeth endometriosis. Bydd y gwelliannau hyn yn cael eu rhoi ar waith trwy gynllun iechyd menywod 10 mlynedd NHS Cymru. Mae cyhoeddi cam cyntaf y cynllun iechyd menywod yn nodi dechrau sgwrs a chytundeb gyda menywod dros y 10 mlynedd nesaf, gan ddefnyddio dull cydgynhyrchu sydd wedi’i nodi yn ‘Cymru Iachach’. Mae’n dangos ymrwymiad clir y dylai’r cynllun iechyd menywod gael ei gyrru gan leisiau menywod a merched Cymru.

Bydd y cynllun yn ceisio mynd i’r afael ag unrhyw annhegwch neu rwystrau yn y ddarpariaeth ar hyn o bryd, gan ddefnyddio dull cwrs bywyd i wneud yn siwr bod gwasanaethau iechyd o ansawdd da ar gael i fenywod trwy gydol eu bywydau. Gan ddilyn y fframwaith clinigol cenedlaethol, mae’r rhwydwaith iechyd menywod yn cael ei greu eleni, a bydd yn helpu creu ffordd mwy strategol a systematig o gydlynu, cyflenwi a sicrhau darpariaeth iechyd menywod ar draws Cymru. I helpu mynd i’r afael â’r diffyg ymchwil a data am gyflyrau iechyd menywod, mae fy swyddogion yn gweithio i sefydlu cronfa ymchwil iechyd menywod.

Cyflwr meddygol yw endometriosis yn ei hanfod, ond mae ganddo oblygiadau eang. Mae angen dull wedi’i fodelu yn gymdeithasol i sicrhau bod menywod yn cael eu cefnogi drwy gydol y broses o gael diagnosis a rheoli’r cyflwr. Mae angen i’r NHS fabwysiadau’r dull yma fel cyflogwyr i wneud yn siwr eu bod yn gwasanaethu eu gweithlu eu hunain yn y ffordd orau, ac yn hybu lles a chynhyrchiad. Dyna’n union beth rŷn ni’n gwneud yn Llywodraeth Cymru. Mae Jack Sargeant wedi dweud bod angen i ni ddangos y ffordd yna—dyna yn union beth rŷn ni’n ei wneud. Dwi’n falch o gadarnhau bod Llywodraeth Cymru wedi cymryd y camau cyntaf pwysig ar y daith yma yn barod trwy lofnodi addunedau menopos ac endometriosis y gweithlu, a phenodi pencampwyr. Mae hyn yn golygu bod y sefydliad yn ymrwymo i ddatblygu amgylchedd gwaith a diwylliant sy’n helpu menywod i gyrraedd eu potensial llawn. Dwi’n ffyddiog ein bod ni ar y llwybr cywir i daclo’r diffyg cydraddoldeb sy’n effeithio menywod mewn gofal iechyd, ond mae’n bwysig cydnabod maint y newidiadau sydd eu hangen, ac na fyddan nhw’n digwydd dros nos.

Rŷn ni’n gweithio mewn partneriaeth gyda sefydliadau partner a grwpiau cynrychioli, ac yn bwysicaf oll, menywod a merched Cymru i sicrhau bod yr NHS yn ymateb go iawn i’w hanghenion. Yn ystod Mis Gweithredu Endometriosis, yn ogystal â’r misoedd i ddod, ein ffocws yw creu newid sylfaenol yn y ffordd mae’r gwasanaeth iechyd yn delio gydag endometriosis ac iechyd menywod, a sicrhau newid parhaol i fenywod yma yng Nghymru. 

Diolch i'r Gweinidog, a diolch, bawb. Daw hynny â'n busnes heddiw, a'r tymor hwn, i ben.

I hope that everyone has a safe and restful recess so that we all come back ready to go again. 

Daeth y cyfarfod i ben am 18:59.