Part of the debate – Senedd Cymru am 6:30 pm ar 29 Mawrth 2023.
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.