Irish women, have you seen this?

[SecondRow]

The HSE removed the word "woman" from their CERVICAL screening pages
I stumbled across this tweet
twitter.com/Salwicklow/status/1305967737563422720?s=20

politely asking them to put woman back in, alongside trans men and trans women, who both get their own special mentions, but they have brushed off the woman who made the original request and are no longer replying.

Here's the HSE pages
www2.hse.ie/screening-and-vaccinations/cervical-screening/when-you-should-have-cervical-screening/who-should-have-cervical-screening.html

And here's Aoife Martin - no cervix skin in the game inviting followers to mock women for wanting the 99.9% of people who need cervical screening to be named as such by a health service that already has some serious catching up to do before women can believe it has their best interests at heart.

twitter.com/aoifemrtn/status/1306339571790159872?s=20

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@Cailleach1
@GrainneMhaol
Phelan also blew the whistle on a medical scandal: dozens of women with cervical cancer were not told that smear test results had wrongly given them a clean bill of health. Authorities withheld the revised test results for years.
This is true of course, and that's what the scandal was about. However, my point is that some people don't realise that this withholding of results didn't affect the women's medical treatment. They were diagnosed with cervical cancer and began treatment, THEN their previous screening tests were looked at again (audited). Some false negatives were identified, this wasn't disclosed. The women had a right to know imo, but my point is the delay by the HSE had no effect on treatment. These women were already diagnosed, that's why the audit was carried out in the first place. The delay in telling them the results of the audit was basically a delay in telling them that 'there was a chance this could have been picked up earlier but unfortunately it wasn't'. Which is obviously terrible and extremely distressing news to receive, and the delay in communication indicates a huge lack of respect - but treatment was never delayed or withheld because of this delay in communication, as some believe.

As for the labs and why the false negatives occured in the first place - neither the Scally report nor the more recent RCOG review found any evidence of negligence. It was CervicalCheck governance that the Scally report criticised. False negatives, even with recent improvements in methodology, cannot be eliminated. This is true worldwide. Overall the independent RCOG review found that the cerivical screening programme is "performing effectively ".

I was being facetious when I said that the HSE mightn't agree that audits are a good thing. Of course they're good from a scientific/medical point of view (to ensure the lab is performing to international standards etc), but it may be that the HSE can't afford the litigation that follows.

The CervicalCheck scandal could possibly have been avoided, imho, by clear communication with women (among other things). Screening tests aren't perfect, cases will get missed. There is, at present, no way of avoiding this and women need to be clearly informed of the limitations before having the test. But screening picks up of the majority of cases and it's a really good idea to have regular smear tests to help protect yourself. However, unfortunately there are no guarantees.

You seem to be saying that auditing is not suspended because of Covid. If it is a deliberate choice to suspend auditing because they don't want to catch any false negatives, then they are making a decision that it is ok for women to die. I would have thought an increased audit regimen in order to save more women would have been the aspiration.

It wasn't just one of those things.

• Authorities withheld the revised test results for years.

• HSE outsourced screening to unapproved laboratories.

• There is no evidence the labs were sub-standard but Irish officials failed to keep track of them and had an “inadequate” system for responding to screening errors, the report said.

With all the background comments from that report. They don't disappear.

Yes, I get false negatives happen. Then you implement a more vigorous checking system to save lives that may be lost. Not say 'don't check at all'.

If only the cervical cancer screening were more 'women' centred.

I'm sorry @Cailleach1, but I don't think you understand the audit process. It's carried out on women already diagnosed with cervical cancer, so suspending audits in no way implies a decision that "it's ok for women to die" as you put it. The false negatives have already occurred, any chance of catching them has passed.

I'm not sure if auditing is still suspended by the way. I hope not, as audits are necessary to maintain standards and women's health will be impacted long-term if standards slip. The suspension of auditing had absolutely nothing to do with Covid.

Yes, I get false negatives happen. Then you implement a more vigorous checking system to save lives that may be lost. Not say 'don't check at all'
I'm afraid false negatives are inherent in any present-day screening process, no matter how vigorous the checks. Reducing them involves increasing hugely the numbers of false positives identified too. This is also bad, so a balance has to be maintained.

This is what I meant about communication. Most cases of abnormal cells will be picked up by screening, the vast majority will be identified if screening is carried out regularly, but it's just not possible to identify all cases and to save everyone at the moment. It's terrible, but it's true I'm afraid.

Really sorry for derailing the thread.

Yes, I won't fill it up either. However, I do think this is associated with the topic.
In the past, I have had some familiarity with audits / Inspections wrt pharmaceuticals. GMP and GxP. You are correct that I misunderstood that the audits being carried out on the unapproved labs the Irish state used for cervical screening were only checks in relation to false negatives and cancers subsequently diagnosed. This raises more questions really.

If, as you say, audits are necessary to maintain standards, then why was the decision made to suspend them?

Is it know how many women were kept in the dark about the false negatives of their screening results? This article states that thousands of women could have been involved. Why and who decided to keep them in the dark?
www.irishexaminer.com/news/arid-20470157.html

Why were unapproved labs used and how often were they Inspected?

Why did Irish officials fail to keep track of the labs and why did Irish officials have an “inadequate” system for responding to screening errors, as per the Scally Report?

What has been done to address this? What is intended to be done to address anything that hasn't been improved?

Not posing these questions at you, Lizzy. Even though you do seem to have some familiarity with it. Just a few Q's off the top of my head. Pondering really. I am sure there must have been much come to light in the Scally report as it seems to be quite excoriating. Particularly mentioning dysfunction, unaccountability and misogyny.

Maybe not such a far journey to exclude the mention of women from the cancer screening of a body part only found in women.

@Cailleach1
Here are some links to newspaper articles, published over the last couple of years, that might be of interest to you.

www.irishtimes.com/opinion/confusion-over-role-of-screening-is-part-of-cervical-check-crisis-1.3499249?mode=amp

m.independent.ie/opinion/comment/ciara-kelly-our-cervical-screening-is-not-perfect-but-women-will-die-if-we-throw-it-away-37990097.html

m.independent.ie/opinion/comment/ciara-kelly-catch-22-dilemma-of-unaudited-cervical-checks-38656023.html

m.independent.ie/opinion/comment/ciara-kelly-who-benefits-if-screening-is-sued-to-oblivion-not-women-38720655.html

@Cailleach1
To balance this you should know that Vicky Phelan found Ciara Kelly's last article above disrespectful, particularly the suggestion that only lawyers are benefiting, I believe.

I do remember that the HSE tried to ensure that. as part of the settlement with Vivky Phelan, she not go public. That Vicky Phelan, who was battling a terminal illness, and had young children to consider, had the courage to refuse this impressed me hugely at the time. She definitely impressed the nation.

Yes, I agree, she has shown true courage and determination in fighting for Irish women. I do think things have backfired a bit now though. Stopping the audit process was definitely a retrograde step. Has anyone heard if it's been resumed?

I saw a tweet last night that NWCI have agreed to ask the HSE to put women back in the materials. Some common sense from them at least!

@SecondRow

I saw a tweet last night that NWCI have agreed to ask the HSE to put women back in the materials. Some common sense from them at least!

They probably had to check with TENI if it was okay.

I know, Cupoftea1234, what could possibly have taken them this long to get on board? And I haven't seen them tweet it out themselves yet either. Perhaps they have to formulate it verrrry carefully!

I don't know why the HSE couldn't use the sort of wording suggested upthread, "women, and others, with a cervix". This is inclusive.

On the subject of who it's excluding, well, transwomen aren't the only women without a cervix. Women who've undergone a total or radical hysterectomy no longer have a cervix either. I'd assume the HSE and it's cervical screening group are aware of this.
Being a woman is about much more than that.
I'm sure they could add in a reminder that the screening isn't necessary for certain groups of women etc. Would that do? Maybe not...

The most important thing from a medical point of view (the primary perspective of the HSE, surely) is to ensure everyone understands who needs screening and who doesn't. So the word women needs to stay in, for this reason alone.

I haven't been able to find that tweet from the NWCI yet either.

twitter.com/radicailin/status/1309174221046796288?s=20

This was the tweet I saw, Lizzie in which they responded supportively to an email. Odd that the NWCI wouldn't just go ahead and retweet out any of the many tweets on the subject or the petition. Would take a matter of seconds.

Thanks very much for that. Yes, hope they do something soon.

@SecondRow

I saw a tweet last night that NWCI have agreed to ask the HSE to put women back in the materials. Some common sense from them at least!

It says everything about them that I wasn't even expecting them to get involved (or at least not in favour of the inclusion of women).

Is there any indication of shift within the HSE?

The NWCI are a huge disappointment but isn't it weird, we are so used to disappointment that we don't even expect more.

I've just seen this on twitter mobile.twitter.com/Salwicklow/status/1310580254747000833
Let's hope there are some women's advocacy groups consulted when they start to rewrite the material.

@ReiltinDubh

I've just seen this on twitter mobile.twitter.com/Salwicklow/status/1310580254747000833 Let's hope there are some women's advocacy groups consulted when they start to rewrite the material.

I have learned that everything I thought was sorted about women's rights is now again up for grabs, so the level of activism must remain high.

It's astonishing, this odd general flavor of how ordinary women are even today treated in so many different countries that permeates many of the language capture debates.

Not direct misogyny (as in hatred of women) but something different: The assumption that we do not matter and should not matter. Then when we protest they react with the kind of irritation I would if the toaster in my kitchen suddenly demanded a holiday.

@ReiltinDubh

I've just seen this on twitter mobile.twitter.com/Salwicklow/status/1310580254747000833 Let's hope there are some women's advocacy groups consulted when they start to rewrite the material.

That's great news. Hopefully the start of a puxhback by Irish women. Out of curiosity, is there any women's advocacy groups that haven't been captured?

Looks like they are digging in.

Reply from CervicalCheck:

Prior to the transition to HPV cervical screening on 30 March 2020, extensive testing was conducted on the CervicalCheck web content, invitation letters, results letters and information leaflets. From this research we learned that the vast majority of the audience were supportive of using gender-neutral language in all communications to users of the screening service.

The HSE aims to use gender-neutral text wherever possible and CervicalCheck has achieved this by using language such as ‘anyone with a cervix’ or ‘people with a cervix’ in their communication to service users. Women are the majority of our service users but for the service to be more inclusive, supported by extensive audience testing, it was agreed to use the above language.

We have taken your point into consideration and will consider it when we update the material in the future.

My reply:

While the term “anyone with a cervix” is gender neutral, it is likely to have the effect of excluding those who have poor English language skills and those who have poor anatomical knowledge. Can you please let me know how you intend to mitigate against that potential outcome? Has any research been conducted to determine whether women in those circumstances recognise themselves as a “person with a cervix”? If not, do you intend doing that research, particularly given the outcome of the research conducted by Jo’s Trust in the UK (www.jostrust.org.uk/node/666780)?

If you have conducted research amongst women with poor English language skills and those who have poor anatomical knowledge can you please point me towards it?

'We have committed to gender neutral language, except for the poor vulnerable trans people who deserve accurate medical information that reflects their situation, but they're more important than you normal boring women, OK?' is what that feels like.

@OchonAgusOchonO

Looks like they are digging in.

Reply from CervicalCheck:

Prior to the transition to HPV cervical screening on 30 March 2020, extensive testing was conducted on the CervicalCheck web content, invitation letters, results letters and information leaflets. From this research we learned that the vast majority of the audience were supportive of using gender-neutral language in all communications to users of the screening service.

The HSE aims to use gender-neutral text wherever possible and CervicalCheck has achieved this by using language such as ‘anyone with a cervix’ or ‘people with a cervix’ in their communication to service users. Women are the majority of our service users but for the service to be more inclusive, supported by extensive audience testing, it was agreed to use the above language.

We have taken your point into consideration and will consider it when we update the material in the future.

The tone there is very different to what was implied in their Tweet to SalWicklow. Is there a way you could make her aware that they are talking out of both sides of their mouth on this? She has been so effective and I would hate to see her back down if they've actually no intention of doing anything aside from "considering" points whenever they update material. That's simply not good enough.

I've still no reply myself.

@3timeslucky - my reply was from CervicalCheck. I got no reply form HSE. I contacted both.

I'll tweet and dm her.