{"id":10232,"date":"2019-11-11T17:54:22","date_gmt":"2019-11-11T17:54:22","guid":{"rendered":"https:\/\/ftww.org.uk\/dev\/?post_type=blog&p=10232"},"modified":"2024-11-12T11:50:45","modified_gmt":"2024-11-12T11:50:45","slug":"endometriosis-can-anybody-hear-us","status":"publish","type":"post","link":"https:\/\/ftww.org.uk\/cy\/2019\/11\/11\/endometriosis-can-anybody-hear-us\/","title":{"rendered":"Endometriosis: Can Anybody Hear Us?"},"content":{"rendered":"

\"\"The last couple of months have marked a really significant turning point for endometriosis<\/strong><\/span><\/a> patients across the UK. October 17th, 2019 was the day on which the BBC finally publicised the results of a survey<\/strong><\/span><\/a> it had conducted into the experiences of the one in ten afflicted. Nationwide media coverage was the result. Just 12 days later, led by MP Alec Shelbrooke, MPs in Westminster debated endometriosis<\/strong><\/span><\/a> and the decision was made to launch a national inquiry into its impact.<\/p>\n

Where the BBC survey is concerned, certainly Welsh residents responded \u2013 but were their experiences adequately reflected in the coverage here? And what about the Westminster debate? We watched avidly as members of parliament from England, Scotland, and Northern Ireland stood up to represent their constituents\u2019 views, but our hearts sank as not a single MP from Wales did the same. In fact, it would appear that there wasn\u2019t a single Welsh MP in attendance (please correct us if we\u2019re wrong).<\/p>\n

Perhaps FTWW\u2019s campaigning<\/span><\/strong><\/a>, our ongoing media presence, the work we\u2019re doing with Welsh Government, and the face-to-face conversations we\u2019ve had on the topic with our elected representatives has somehow been missed or forgotten? Perhaps we\u2019re over-reacting? (Let\u2019s face it, it wouldn\u2019t be the first time women with gynaecological symptoms have been accused of melodrama)! So, let\u2019s explore the issues, as we ask, \u2018can anybody hear us\u2019?<\/em><\/strong><\/p>\n

The BBC\u2019s survey attracted an unprecedented 13,500 respondents and, just as in the rest of the UK, women in Wales were reporting years\u2019 long delays in diagnosis and treatment, unbearable pain, missing out on education, work, a social life\u2026Losing relationships, losing the ability to bear children, sometimes losing the will to live \u2013 almost 50% reported having contemplated suicide as a result of their suffering.<\/p>\n

FTWW was delighted therefore to be approached by BBC Wales to provide input into how things were going with Welsh Government since the publication of its Endometriosis Task & Finish Group\u2019s recommendations<\/strong><\/span><\/a>, a group we had been instrumental in initiating and on which we provided patient representation.<\/p>\n

\"\"

Lowri did a sterling job representing FTWW!<\/p><\/div>\n

Delighted because we envisaged this being a great opportunity to apply some pressure to a government which, where endometriosis patients are concerned, appears to be moving at a frustratingly slow pace.<\/p>\n

The final report emanating from the Task & Finish group\u2019s year-long efforts was produced in April 2018, and a statement<\/strong><\/span><\/a> on its contents published by the Health Minister, Vaughan Gething, in October 2018 – a full year ago. The BBC and Westminster\u2019s decision to focus on endometriosis in October 2019 marked the first anniversary of Mr Gething\u2019s commitment to fulfilling the recommendations on which we had worked so hard, ensuring that \u2013 this time – Wales was ahead of the curve!<\/strong><\/p>\n

So, did the BBC in Wales do enough to find out what\u2019s become of those recommendations a whole year later? Did they adequately explain the condition that is \u2018endometriosis\u2019 and put to rest the \u2018hysterectomy as cure\u2019 myth? Did any of our elected representatives consider that a national \u2013 televised \u2013 debate in Westminster might be a good place to both raise awareness of work going on in Wales, whilst simultaneously reflecting women\u2019s concerns that change isn\u2019t happening swiftly enough? Maybe we\u2019re hard to please but \u2018could do better\u2019 on all fronts seemed to be the general consensus amongst our members.<\/p>\n

First of all, we want to make clear that we\u2019re absolutely thrilled that endometriosis \u2013 and FTWW itself \u2013 was given air-time by BBC Wales. Let\u2019s not forget that this condition is still very much deemed taboo, and that \u2018women\u2019s health equality\u2019 is often subjected to \u2018whataboutery\u2019, where we\u2019re frequently informed that, \u2018women live longer than men\u2019*, that \u2018breast cancer gets more funding than any other\u2019** and that, therefore, \u2018women are more than equal, already\u2019. So, we\u2019re not wishing to negate the really positive impact this reporting will have had.<\/p>\n

Where we are disappointed is the missed opportunity to really hold Welsh Government to account over its slow progress on improving endometriosis provision.<\/p>\n

Let\u2019s be clear: it\u2019s not all doom and gloom. Firstly, FTWW is in a pretty unique position in that it\u2019s represented on the Women\u2019s Health Implementation Group (WHIG) set up to examine and action recommendations emanating from a few different Task & Finish Groups \u2013 mesh-related injury, and faecal incontinence, in addition to endometriosis. We have a seat at the table \u2013 and that shows Welsh Government\u2019s growing commitment to co-production (ie where service-users \/ patients get to assist in the development of the services we\u2019re going to use).<\/p>\n

We\u2019re moving towards the creation of a Welsh Government-funded women\u2019s health website which will initially focus on endometriosis and is aimed at both patients and clinicians here, the idea being that this authorised resource will speed up diagnoses and clarify referral pathways. FTWW members have been involved in its design and content, from inception onwards. However, let\u2019s be blunt \u2013 it\u2019s at its very early stages of development \u2013 and, as we speak, there are countless women across Wales still struggling with symptoms that are ruining their lives whilst being disbelieved by virtually everyone they encounter.<\/p>\n

We\u2019re also going to see \u2018pelvic wellbeing\u2019 pathways developed in each health board, with personnel recruited to co-ordinate services, such as pelvic physiotherapy and pain management\u2026It all sounds good, sure, but is too harsh to suggest that, where the hundreds of thousands of endo patients in Wales are concerned, it\u2019s merely tinkering around the edges of what is, actually, a massive, MASSIVE problem?<\/p>\n

\"\"Are we being harsh if we suggest that the BBC in Wales could have drilled down further, not only to inform and reassure those patients (and medical professionals) who are desperately trying to find some sort of solace in the midst of a creaking system that something is happening, but to get Welsh Government to answer those questions we all want answered? Are we being harsh if we express bitter disappointment that none of our MPs felt that the suffering of 150,000 people in Wales was something worth standing up for at a UK-wide forum?<\/p>\n

FTWW members continue to ask: \u2018will we get more specialists in the condition \u2013 \u2018endo champions\u2019 – working in every health board? Will we be able to access endometriosis nurses in our local GP practice, in the same way as diabetes patients can? After all, our numbers are the same, and the costs to the economy just as eye-watering! Will we get the two more centres of excellence in Wales, to ensure our provision is the same per head as England? Will endometriosis, and menstrual health more generally, be mandatory on the school curriculum, the medical school curriculum, the public health agenda? Will anyone ever really care enough about this disease to fund research and find a cure???\u2019<\/p>\n

In summary: women in Wales are grateful for the media coverage this disease garnered on October 17th and 29th; we\u2019re grateful that politicians in the rest of the UK believe endometriosis to be a topic worthy of both representation and a national inquiry. But that veneer of gratitude is starting to crack already. Women in Wales are angry; they\u2019re disappointed; they\u2019re literally hurting, and they want to see that there are people out there listening, listening and able to provide both answers and action. It\u2019s been long enough already.<\/strong><\/p>\n

*\u2018women live longer than men\u2019 \u2013 in the UK, the difference in life expectancy is now 2 years in favour of women. However, evidence shows us that women spend longer in old age living with multiple chronic health conditions.<\/p>\n

**\u2018breast cancer gets more funding than any other\u2019 \u2013 mainly as a result of tireless campaigning and fund-raising on the part of women themselves.<\/p>","protected":false},"excerpt":{"rendered":"

The last couple of months have marked a really significant turning point for endometriosis patients across the UK. 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