Can Anybody Hear Us?

The last couple of months have marked a really significant turning point for endometriosis patients across the UK. October 17th, 2019 was the day on which the BBC finally publicised the results of a survey 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 and the decision was made to launch a national inquiry into its impact.

Where the BBC survey is concerned, certainly Welsh residents responded – 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’ views, but our hearts sank as not a single MP from Wales did the same. In fact, it would appear that there wasn’t a single Welsh MP in attendance (please correct us if we’re wrong).

Perhaps FTWW’s campaigning, our ongoing media presence, the work we’re doing with Welsh Government, and the face-to-face conversations we’ve had on the topic with our elected representatives has somehow been missed or forgotten? Perhaps we’re over-reacting? (Let’s face it, it wouldn’t be the first time women with gynaecological symptoms have been accused of melodrama)! So, let’s explore the issues, as we ask, ‘can anybody hear us’?

The BBC’s survey attracted an unprecedented 13,500 respondents and, just as in the rest of the UK, women in Wales were reporting years’ long delays in diagnosis and treatment, unbearable pain, missing out on education, work, a social life…Losing relationships, losing the ability to bear children, sometimes losing the will to live – almost 50% reported having contemplated suicide as a result of their suffering.

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’s recommendations, a group we had been instrumental in initiating and on which we provided patient representation.

Lowri did a sterling job representing FTWW!

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.

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

So, did the BBC in Wales do enough to find out what’s become of those recommendations a whole year later? Did they adequately explain the condition that is ‘endometriosis’ and put to rest the ‘hysterectomy as cure’ myth? Did any of our elected representatives consider that a national – televised – debate in Westminster might be a good place to both raise awareness of work going on in Wales, whilst simultaneously reflecting women’s concerns that change isn’t happening swiftly enough? Maybe we’re hard to please but ‘could do better’ on all fronts seemed to be the general consensus amongst our members.

First of all, we want to make clear that we’re absolutely thrilled that endometriosis – and FTWW itself – was given air-time by BBC Wales. Let’s not forget that this condition is still very much deemed taboo, and that ‘women’s health equality’ is often subjected to ‘whataboutery’, where we’re frequently informed that, ‘women live longer than men’*, that ‘breast cancer gets more funding than any other’** and that, therefore, ‘women are more than equal, already’. So, we’re not wishing to negate the really positive impact this reporting will have had.

Where we are disappointed is the missed opportunity to really hold Welsh Government to account over its slow progress on improving endometriosis provision.

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

We’re moving towards the creation of a Welsh Government-funded women’s 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’s be blunt – it’s at its very early stages of development – 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.

We’re also going to see ‘pelvic wellbeing’ pathways developed in each health board, with personnel recruited to co-ordinate services, such as pelvic physiotherapy and pain management…It all sounds good, sure, but is too harsh to suggest that, where the hundreds of thousands of endo patients in Wales are concerned, it’s merely tinkering around the edges of what is, actually, a massive, MASSIVE problem?

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?

FTWW members continue to ask: ‘will we get more specialists in the condition – ‘endo champions’ – 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???’

In summary: women in Wales are grateful for the media coverage this disease garnered on October 17th and 29th; we’re 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’re disappointed; they’re literally hurting, and they want to see that there are people out there listening, listening and able to provide both answers and action. It’s been long enough already.

*‘women live longer than men’ – 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.

**‘breast cancer gets more funding than any other’ – mainly as a result of tireless campaigning and fund-raising on the part of women themselves.