{"id":75024,"date":"2022-03-26T19:05:39","date_gmt":"2022-03-26T19:05:39","guid":{"rendered":"https:\/\/cardiffjournalism.co.uk\/intercardiff\/?p=75024"},"modified":"2022-04-25T07:59:22","modified_gmt":"2022-04-25T06:59:22","slug":"its-really-complex-wales-new-endometriosis-nurses-just-the-first-step","status":"publish","type":"post","link":"https:\/\/cardiffjournalism.co.uk\/intercardiff\/sport-health\/its-really-complex-wales-new-endometriosis-nurses-just-the-first-step","title":{"rendered":"\u201cIt\u2019s really complex\u201d: Wales\u2019 new endometriosis nurses just the first step"},"content":{"rendered":"\n<h2 class=\"wp-block-heading\"><strong>Specialist nurses in every local health board bring empowerment and hope but many barriers to diagnosis and treatment remain<\/strong>&nbsp;<\/h2>\n\n\n\n<figure class=\"wp-block-image size-full\"><img decoding=\"async\" width=\"950\" height=\"534\" loading=\"lazy\" src=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/nurse.jpg\" alt=\"\" class=\"wp-image-75041\" srcset=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/nurse.jpg 950w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/nurse-300x169.jpg 300w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/nurse-770x433.jpg 770w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/nurse-293x165.jpg 293w\" sizes=\"auto, (max-width: 950px) 100vw, 950px\" \/><noscript><img decoding=\"async\" width=\"950\" height=\"534\" src=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/nurse.jpg\" alt=\"\" class=\"wp-image-75041\" srcset=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/nurse.jpg 950w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/nurse-300x169.jpg 300w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/nurse-770x433.jpg 770w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/nurse-293x165.jpg 293w\" sizes=\"(max-width: 950px) 100vw, 950px\" \/><\/noscript><figcaption><strong>The Welsh Government has appointed at least one endometriosis nurse in each of the seven local health boards.<\/strong><\/figcaption><\/figure>\n\n\n\n<p>When Phoebe Lewis was 12 years old, she got her first period. As for most people, it was a momentous occasion but an unnerving one too. Unlike most people, Phoebe ended up in hospital.&nbsp;&nbsp;&nbsp;<\/p>\n\n\n\n<p>\u201cIt was just really scary more than anything,\u201d says Phoebe. \u201cI didn\u2019t know anyone who\u2019d been through a similar experience. That made me think I was being dramatic. Or that what I was experiencing was normal\u201d.&nbsp;&nbsp;&nbsp;<\/p>\n\n\n\n<p>It wasn\u2019t normal. It was endometriosis, a reproductive condition that affects one in ten women worldwide which can cause a wide range of symptoms including heavy periods and difficulty in getting pregnant, according to the charity Endometriosis UK.&nbsp;&nbsp;&nbsp;<\/p>\n\n\n\n<p>Phoebe didn\u2019t learn this right away; it took her more than ten years to receive a diagnosis. Across the UK there is a median diagnostic delay of eight years according to research published in the Journal of Obstetrics and Gynecology.&nbsp;&nbsp;&nbsp;<\/p>\n\n\n\n<p>Wales, however, is the worst performer. \u201cWe have a nine-year average diagnostic delay, that\u2019s the longest out of all of the home nations,\u201d says Dee Montague, Engagement Officer from Fair Treatment for the Women of Wales (FTWW) which campaigns for health equality.&nbsp;&nbsp;Dee, however, had to wait 23 years for treatment.&nbsp;<\/p>\n\n\n\n<p>In a bid to improve matters, the promise of one specialist endometriosis nurse in every local health board in Wales was made by the Welsh Government in 2019 and implemented in March this year.&nbsp;&nbsp;&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-image size-full is-resized\"><img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Beth-Petition-hand-in-Welsh-Parliament-Cropped.png\" alt=\"\" class=\"wp-image-75043\" width=\"769\" height=\"431\" srcset=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Beth-Petition-hand-in-Welsh-Parliament-Cropped.png 540w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Beth-Petition-hand-in-Welsh-Parliament-Cropped-300x168.png 300w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Beth-Petition-hand-in-Welsh-Parliament-Cropped-293x164.png 293w\" sizes=\"auto, (max-width: 769px) 100vw, 769px\" \/><noscript><img decoding=\"async\" src=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Beth-Petition-hand-in-Welsh-Parliament-Cropped.png\" alt=\"\" class=\"wp-image-75043\" width=\"769\" height=\"431\" srcset=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Beth-Petition-hand-in-Welsh-Parliament-Cropped.png 540w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Beth-Petition-hand-in-Welsh-Parliament-Cropped-300x168.png 300w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Beth-Petition-hand-in-Welsh-Parliament-Cropped-293x164.png 293w\" sizes=\"(max-width: 769px) 100vw, 769px\" \/><\/noscript><figcaption><strong>Members of FTWW delivering a petition to improve endometriosis healthcare in Wales to the Senedd. Photo cred: Dee Montague<\/strong><\/figcaption><\/figure>\n\n\n\n<p>When the announcement was made the Health Minister, Eluned Morgan said: \u201cI have heard distressing accounts of misdiagnosis and women with this condition not being taken seriously with this condition, I am determined that women in Wales get the service they deserve.\u201d&nbsp;&nbsp;&nbsp;<\/p>\n\n\n\n<p>FTWW were involved in the appointment of the nurses and have welcomed the development. \u201cThis is a role that is completely bespoke to Wales. This is really new, it\u2019s exciting,\u201d says Dee.&nbsp;&nbsp;&nbsp;<\/p>\n\n\n\n<p>Other endometriosis organisations have also welcomed the news. \u201cThis is an important step forward in reducing diagnosis times and improving care and support, and it\u2019s great to see the Welsh Government proactively taking steps to improve the quality of life for those with endometriosis,\u201d says Emma Cox, CEO of Endometriosis UK.&nbsp;&nbsp;<\/p>\n\n\n\n<p>All nurses have been appointed but some are still in training and some are in post.&nbsp; Dee has experienced the benefits of working with an endometriosis&nbsp;nurse firsthand.&nbsp;&nbsp;<\/p>\n\n\n\n<p>\u201cI think something that endo patients will tell you is that they don\u2019t feel heard they feel listened to. So to have that person, [an] endo nurse fighting our corner\u201d she says. \u201cThat\u2019s empowering me.\u201d&nbsp;&nbsp;<\/p>\n\n\n\n<p>The nurses can provide a clinical stopgap as training doctors in this area can be expensive and timely. As&nbsp;specialist nurses they can help improve diagnosis times and treatment by prescribing and referring.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img decoding=\"async\" width=\"950\" height=\"535\" loading=\"lazy\" src=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Women-ages.jpg\" alt=\"\" class=\"wp-image-75045\" srcset=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Women-ages.jpg 950w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Women-ages-300x169.jpg 300w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Women-ages-770x434.jpg 770w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Women-ages-293x165.jpg 293w\" sizes=\"auto, (max-width: 950px) 100vw, 950px\" \/><noscript><img decoding=\"async\" width=\"950\" height=\"535\" src=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Women-ages.jpg\" alt=\"\" class=\"wp-image-75045\" srcset=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Women-ages.jpg 950w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Women-ages-300x169.jpg 300w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Women-ages-770x434.jpg 770w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Women-ages-293x165.jpg 293w\" sizes=\"(max-width: 950px) 100vw, 950px\" \/><\/noscript><figcaption><strong>Women of all ages can be affected by endometriosis<\/strong> including teenagers. <\/figcaption><\/figure>\n\n\n\n<p>\u201cI think endo nurses can really help in that interim, they can help while women are waiting on those waiting lists,\u201d Dee says. \u201cBe that real sort of point of support\u201d.&nbsp;&nbsp;<\/p>\n\n\n\n<p>The nurses will play an important role in accessing mental health treatment too. \u201cIt\u2019s doubly important that the nurses explain that \u2018I am not saying that this is in your head, what I am saying is that living with these chronic conditions must be impacting your mental health and your quality of life\u2019\u201d, says Dee.&nbsp;&nbsp;&nbsp;<\/p>\n\n\n\n<p>The nurses may bring hope and progress, but their appointment is not seen as an outright solution but more of a step in the right direction.&nbsp;There are still many barriers to diagnosis and treatment for endometriosis.&nbsp;&nbsp;<\/p>\n\n\n\n<p>\u201cIt\u2019s really complex,\u201d says Dee. \u201cThere\u2019s so many reasons as to why these huge diagnostic delays exist\u201d.&nbsp;&nbsp;<\/p>\n\n\n\n<p>Gaps in medical training may be part of the problem. \u201cAcross the world, you\u2019ve got this condition that affects at least one in ten women and those assigned female at birth. Yet healthcare professionals aren\u2019t adequately trained to see it and treat it. That\u2019s possibly the main issue,\u201d says Dee.&nbsp;&nbsp;&nbsp;<\/p>\n\n\n\n<p>This may go some way in explaining why patients in Wales see five doctors on average before they reach a diagnosis, according to a 2015 report by FTWW.&nbsp;&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe class=\"zeen-lazy-load-base zeen-lazy-load\" title=\"Endometriosis: warning signs\" width=\"1200\" height=\"675\" src=\"about:blank\" data-lazy-src=\"https:\/\/www.youtube.com\/embed\/Mg11vPFLbCg?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture\" allowfullscreen><\/iframe><noscript><iframe title=\"Endometriosis: warning signs\" width=\"1200\" height=\"675\" src=\"https:\/\/www.youtube.com\/embed\/Mg11vPFLbCg?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture\" allowfullscreen><\/iframe><\/noscript>\n<\/div><\/figure>\n\n\n\n<p>Accessing surgery is also an issue. Funding is divided up among the local health boards and&nbsp;with just two specialist consultants in Wales, both based in Cardiff, this can cause problems for patients in other areas of Wales, according to Dee. &nbsp;&nbsp;<\/p>\n\n\n\n<p>\u201cIn England, the system is that the funding follows the patient,\u201d says Dee, meaning that if you were to live in Bristol but wanted to access treatment in Liverpool you could do so. &nbsp;&nbsp;<\/p>\n\n\n\n<p>\u201cWe\u2019re hearing from our members, I don\u2019t know if this is official,\u201d says Dee. \u201cThat they can wait up to six years now for surgery with a specialist, which is obviously completely unacceptable\u201d.&nbsp;&nbsp;&nbsp;<\/p>\n\n\n\n<p>Long waiting times often lead those with endometriosis to go private &#8211; both Dee and Phoebe did so. A standard surgery at private can start at \u00a35,570 according to figures from the Endometriosis clinic.&nbsp;&nbsp;<\/p>\n\n\n\n<p>There are also more personalised issues that can affect patients. Phoebe, for example, feels that her age and her gender affected her diagnosis.&nbsp;&nbsp;<\/p>\n\n\n\n<p>\u201cIt was just a horrible process of being ignored, being fobbed off on birth control at the age of 12,\u201d she says. \u201cIt was only recently that I got listened to by one of my specialists in Cardiff and it\u2019s been so much better\u201d.&nbsp;&nbsp;&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img decoding=\"async\" width=\"819\" height=\"460\" loading=\"lazy\" src=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Yellow4Endo-Cropped.jpg\" alt=\"\" class=\"wp-image-75046\" srcset=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Yellow4Endo-Cropped.jpg 819w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Yellow4Endo-Cropped-300x168.jpg 300w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Yellow4Endo-Cropped-770x432.jpg 770w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Yellow4Endo-Cropped-293x165.jpg 293w\" sizes=\"auto, (max-width: 819px) 100vw, 819px\" \/><noscript><img decoding=\"async\" width=\"819\" height=\"460\" src=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Yellow4Endo-Cropped.jpg\" alt=\"\" class=\"wp-image-75046\" srcset=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Yellow4Endo-Cropped.jpg 819w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Yellow4Endo-Cropped-300x168.jpg 300w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Yellow4Endo-Cropped-770x432.jpg 770w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/Yellow4Endo-Cropped-293x165.jpg 293w\" sizes=\"(max-width: 819px) 100vw, 819px\" \/><\/noscript><figcaption>FTWW&#8217;s current campaign to honour Endometriosis month this March. Photo cred: Dee Montague<\/figcaption><\/figure>\n\n\n\n<p>But talking about these things is often difficult because of another reason \u2013 embarrassment.&nbsp;&nbsp;&nbsp;&nbsp;<\/p>\n\n\n\n<p>\u201cI\u2019m still a little bit embarrassed to talk about it,\u201d says Phoebe. \u201cIt feels a bit weird talking about your period\u201d. &nbsp;<\/p>\n\n\n\n<p>Websites such as Bloody Brilliant are making information more accessible and to encourage people to talk about it,&nbsp;but there are even more barriers for some members of society.&nbsp;<\/p>\n\n\n\n<p>\u201cI\u2019m saying this as a white middle class woman, so for other people from different communities their stigma and shame can be tenfold,\u201d says Dee.&nbsp; \u201cAll of us need to do more to ensure that those pathways for black and minority ethnic groups are there as well.\u201d&nbsp;FTWW are working on a quality statement to present to the Welsh Government to improve things in this area.&nbsp;&nbsp;<\/p>\n\n\n\n<p>For Phoebe, there are other hopes.&nbsp; \u201cIt is one of those things is going to come back,\u201d says Phoebe. \u201cThe main thing would be for there to be more research into a better way of diagnosing it.&nbsp;&nbsp;&nbsp;<\/p>\n\n\n\n<p>I don\u2019t even know how possible that is really. But in a perfect world, that would be what I would want\u201d.&nbsp;&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img decoding=\"async\" width=\"950\" height=\"535\" loading=\"lazy\" src=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/senedd.jpg\" alt=\"\" class=\"wp-image-75048\" srcset=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/senedd.jpg 950w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/senedd-300x169.jpg 300w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/senedd-770x434.jpg 770w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/senedd-293x165.jpg 293w\" sizes=\"auto, (max-width: 950px) 100vw, 950px\" \/><noscript><img decoding=\"async\" width=\"950\" height=\"535\" src=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/senedd.jpg\" alt=\"\" class=\"wp-image-75048\" srcset=\"https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/senedd.jpg 950w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/senedd-300x169.jpg 300w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/senedd-770x434.jpg 770w, https:\/\/cardiffjournalism.co.uk\/intercardiff\/wp-content\/uploads\/sites\/12\/2022\/03\/senedd-293x165.jpg 293w\" sizes=\"(max-width: 950px) 100vw, 950px\" \/><\/noscript><figcaption>FTWW are working on presenting a quality statement to the Welsh Government.<\/figcaption><\/figure>\n\n\n","protected":false},"excerpt":{"rendered":"<p>Wales appoints endometriosis nurses to every local health board to address long waiting times and misdiagnosis. But is this enough?<\/p>\n","protected":false},"author":798,"featured_media":75041,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[14,17],"tags":[],"coauthors":[1059],"class_list":["post-75024","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-politics-social-justice","category-sport-health"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.2 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>\u201cIt\u2019s really complex\u201d: Wales\u2019 new endometriosis nurses just the first step - InterCardiff<\/title>\n<meta name=\"robots\" content=\"noindex, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"\u201cIt\u2019s really complex\u201d: Wales\u2019 new endometriosis nurses just the first step - InterCardiff\" \/>\n<meta property=\"og:description\" content=\"Wales appoints endometriosis nurses to every local health board to address long waiting times and misdiagnosis. 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