Cervical Check...No Scandal..

Caledonia · 06-12-2019 9:54pm #1

Anyone else think this. Read some of the articles and basically we are in line with the UK, the programme is effective, false negative results or ‘missed opportunities’ can’t actually be prevented. Without overtreatment which is bad overall.
Just seems for something that was portrayed as being a massive thing there’s very little in it. Jeez you can see why it’s only us and the UK out of the EU who’ve started telling patients about audits if this goes on.

BarryD2 · 06-12-2019 10:02pm

Well if there was scandal, it was in how false negatives and problems were dealt with i.e. sweeping them under the carpet and keeping the HSE mouth shut.

The whole issue did blow out of proportion and became a political football. The media jumped all over it as they love a story like this. People got easily confused between a screening programme (with expected flaws) and a diagnostic programme. The public didn't understand the nature of a public screening programme and it's limitations. That was the 'scandal'.

Caledonia · 06-12-2019 11:20pm

Yeah I did think the likes of Ray dArcy lost the run of themselves. Then the doctors were maybe afraid to come across as criticising the women so didn’t say what they were thinking. Ciara Kelly got lambasted by Vicky Phelan for a decent article a couple of weeks ago. Then the report showed Ciara Kelly was right.
I think it’s a bit disturbing.

astrofool · 06-12-2019 11:28pm

Cancer is awful, but the way the media and politicians latched onto this, you'd think the program was giving people cancer.

Tests are fallible, the slides are read by people who have to make their educated opinion on whether there is a problem or not, and they can and will be wrong, but they will catch a high proportion of cases as well.

If they continue to go after the testing procedures and process, then the labs will stop doing it and the whole check process will have to shut down.

That is not to say that improvements cannot be made, but improvements can be made everywhere to absolutely everything, 1 day, maybe, the process will be entirely automated and error rates reduced further, but errors will still occur, and it is not always someone's fault when they do occur.

Mrs OBumble · 07-12-2019 12:54am

The scandal was that the labs said "with this quality of reading, you need to test every N years" but Irish authorities chose to only test every N+some years.

Even so some people would have been missed anyways.

And of course no one's brave enough to talk about what behaviour puts people at more risk of getting the HPV virus.

Caledonia · 07-12-2019 12:56am

astrofool wrote: »

Cancer is awful, but the way the media and politicians latched onto this, you'd think the program was giving people cancer.

ðŸ˜‚ so true.
Alan Kelly TD was in the thick of it,v bad.
I kind of feel patient advocates were given an easy ride. I understand it but even tho you are sick it doesn’t mean ur 100% right in ur allegations. Itlooks like if anything the overreaction damaged the programme. I read they lost a lot of staff cos of the abuse and then all the panic caused a backlog.

Abba987 · 07-12-2019 12:56am

The results these labs were giving us did not match up with our screening programme. So normal if its done every year but concerning to leave it 3 years.

Is it possible to bring it back in? I dont believe we have the cytogologists anymore to run the programme ourselves. Lowest bidder once again won out

Miike · 07-12-2019 1:01am

The cervical check scandal was a fundamental failure of open disclosure and clinical efficacy. It wasn't about false positives or false negatives. Samples were going past their 'usable date' in the lab and when people were +ive there was a shuffling of feet around who is going to tell the patient and ultimately no one did, people ended up having very advanced stage cervical cancer as a result of this failure. It was certainly scandal to say the very least.

noodler · 07-12-2019 1:03am

Like others have said, some people and the media are making it sound like screening is 100% effective when that was never the case.

That being said, a couple of 100 slides have been deemed as discordant from the original reading bit only half of these could have substantially changed anything according to the report.

The lack of disclosure about your slide being read again was the real moral flaw

07-12-2019 1:04am

I wouldn't be so flippant when hundreds of womens' lives were needlessly placed at risk. "No scandal" my backside.

noodler · 07-12-2019 1:08am

[Deleted User] wrote: »

I wouldn't be so flippant when hundreds of womens' lives were needlessly placed at risk. No scandal my backside.

About 150 slides that could have been read differently could possibly have been treated (to some extent) with some effectiveness.

I don't think anyone is being flippant but some of the media coverage and commentary is erroding confidence in a process that is broadly accurate.

Wesser · 07-12-2019 1:09am

cervical cancer deaths have fallen year on year since it started 10 years ago. it has saved many lives.

Caledonia · 07-12-2019 2:04am

Miike wrote: »

The cervical check scandal was a fundamental failure of open disclosure and clinical efficacy. It wasn't about false positives or false negatives. Samples were going past their 'usable date' in the lab and when people were +ive there was a shuffling of feet around who is going to tell the patient and ultimately no one did, people ended up having very advanced stage cervical cancer as a result of this failure. It was certainly scandal to say the very least.

Mike that is totally wrong!! Jesus that would be some scandal. That didn’t happen thankfully. No one missed out on a cancer diagnosis as a result of non disclosure. It was people who knew they had cancer whose slides were audited.

CervicalCheck carried out an audit of 1,482 previous cervical screening tests on women who were diagnosed with cervical cancer from 2008 to 2018.

Caledonia · 07-12-2019 2:10am

[Deleted User] wrote: »

I wouldn't be so flippant when hundreds of womens' lives were needlessly placed at risk. "No scandal" my backside.

What are you on about needlessly & lives placed at risk?? Sorry but that’s bs. It has come out that False negatives can’t be prevented in screening. It’s an inherent part of it. There’s no needlessly about it.

Miike · 07-12-2019 2:54am

Caledonia wrote: »

Mike that is totally wrong!! Jesus that would be some scandal. That didn’t happen thankfully. No one missed out on a cancer diagnosis as a result of non disclosure. It was people who knew they had cancer whose slides were audited.

CervicalCheck carried out an audit of 1,482 previous cervical screening tests on women who were diagnosed with cervical cancer from 2008 to 2018.

I worded that poorly, I won't lie. Really poorly actually. But ultimately what I'm trying to get at is there was people with cervical cancer, which the national screening service knew about but was not disclosed. They national screening service knew in 20124 Vicky Phelans 2011 test was an incorrect negative test (she was diagnosed with cancer in 2014, after the internal review date). Mrs. Phelan wasn't made aware of this until 2017, that's harrowing. The NSC tiptoed around disclosing the fact she actually was +ive for CC.

07-12-2019 3:14am

Mrs OBumble wrote: »

The scandal was that the labs said "with this quality of reading, you need to test every N years" but Irish authorities chose to only test every N+some years.

Even so some people would have been missed anyways.

And of course no one's brave enough to talk about what behaviour puts people at more risk of getting the HPV virus.

Yes, it is after all an STD, much like any others that have been stigmatized. The reason is is not “assigned” the stigma by the media is because it is seen to mainly affect women, although throat/neck cancers in any person is being recognised as often due to job from oral contact. The media and others, back in the day, thought it was ok for stigma to be assigned to HIV/AIDS because it mainly affected men. A person can become infected by one single unfortunate contact, but the risk of getting a more virulent strain is increased by any party having multiple contacts.

jimmycrackcorm · 07-12-2019 4:41am

The biggest issue with this is that the huge outcry and the millions paid out on compensation means that the HSE will think twice to introduce any similar programmes because of the danger of massive payouts e.g. the 2.5m to Vicky Phelan.

Not saying that she didn't deserve that but thousands of others get cancer and don't get payouts just because there is no tests with the possibility of errors.

Obvious Desperate Breakfasts · 07-12-2019 4:44am

jimmycrackcorm wrote: »

The biggest issue with this is that the huge outcry and the millions paid out on compensation means that the HSE will think twice to introduce any similar programmes because of the danger of massive payouts e.g. the 2.5m to Vicky Phelan.

Not saying that she didn't deserve that but thousands of others get cancer and don't get payouts just because there is no tests with the possibility of errors.

To get that payout, she would have needed to have an very strong case. Medical negligence cases are incredibly hard to win. This is something I looked into myself in the last few years and I decided against taking legal action (not cervical cancer though). There won’t be a upsurge in payouts so I doubt the HSE will be too discouraged.

Montage of Feck · 07-12-2019 5:31am

There's always someone or something to blame/payout for life's misfortunes it seems theses days.

Obvious Desperate Breakfasts · 07-12-2019 6:34am

Montage of Feck wrote: »

There's always someone or something to blame/payout for life's misfortunes it seems theses days.

These are women losing their lives far too soon. This isn’t some frivolous compo case.

LirW · 07-12-2019 8:38am

Montage of Feck wrote: »

There's always someone or something to blame/payout for life's misfortunes it seems theses days.

Emma Mhic Mathuna lost her life and left behind 5 children with no fault of her own.
Vicky Phelan is terminally ill with no fault of her own.
Both went to screenings and did what they could. An error happened, in Phelan's case more than once.
What's scandalous about it is that when the error was realised these women weren't told and it was swept under the carpet, so they only learned about their illness when it was too late for them. If they learned about their diagnosis in time, their lives could have been saved.

And there were several other anonymous women in the same timeframe that died for the same reasons.
Vicky Phelan just had the strength to fight back and showed how she and other women were victims of severe negligence and the truth was held from them until it was too late for them.
Other women realized it could be them, they don't know, how can they trust a program that covered up several fatal errors to keep their face.

Both women had strong cases and that's why they won. I don't get how anyone can begrudge a victim of an injustice on such a large scale.

And keep in mind that while the program saved many lives, it's vastly inferior to other European counter parts. Lab samples are sent to the states because it's cheaper than having them read closer to home.
Women generally have difficulties getting access to gynaecological doctors when an annual gyn routine exam is the standard in many other countries in Europe, where women are encouraged to go every year and can directly access consultants because there are many. The emergency waiting list for a gym appointment is 6 months, the normal one over a year.
My hometown of 300k people has over 70 gynaecologists practicing independently carrying out routine annual exams that include smears and there are 2 labs reading the results. I never waited longer than a week for results.
Ireland's South East has 3 private consultants accessible and a handful of public, working through the endless waiting lists.

Caledonia · 07-12-2019 9:38am

But that’s mad about coverup sure Ireland and the UK are the only countries in the EU now doing open disclosure of audits.
Not France not Germany not any of the Scandinavian countries.

So if ur hometown is the EU you need to get riled up cos they ain’t telling No one about audit look backs. And maybe for good reason when u look at this??

Jinglejangle69 · 07-12-2019 9:57am

Uneducated morons somehow blame Simon Harris personally for misreading the scans and hid the results even though some of them were in 2010.

Just used for political purposes now by the opposition.

Sad indictment of politics these days.

LirW · 07-12-2019 10:03am

Caledonia wrote: »

So if ur hometown is the EU you need to get riled up cos they ain’t telling No one about audit look backs. And maybe for good reason when u look at this??

I don't get what your point is.

Caledonia · 07-12-2019 12:40pm

LirW wrote: »

I don't get what your point is.

Basically people saying the lack of disclosure is scandalous - only Ireland and the UK disclose audits. Other countries don’t. So they are so so scandalous in ur view. So if u think iwe were scandalous get across the EU & complain!

thomasdylan · 07-12-2019 12:58pm

LirW wrote: »

And keep in mind that while the program saved many lives, it's vastly inferior to other European counter parts.

In what way is it inferior to European counterparts?

One of the most strangest things about this was that the judge in the supreme Court set 'absolute confidence' as the threshold for screening. Which means that the judge doesn't understand screening and the screening process.

Mules · 07-12-2019 1:11pm

LirW wrote: »

Emma Mhic Mathuna lost her life and left behind 5 children with no fault of her own.
Vicky Phelan is terminally ill with no fault of her own.
Both went to screenings and did what they could. An error happened, in Phelan's case more than once.
What's scandalous about it is that when the error was realised these women weren't told and it was swept under the carpet, so they only learned about their illness when it was too late for them. If they learned about their diagnosis in time, their lives could have been saved.

And there were several other anonymous women in the same timeframe that died for the same reasons.
Vicky Phelan just had the strength to fight back and showed how she and other women were victims of severe negligence and the truth was held from them until it was too late for them.
Other women realized it could be them, they don't know, how can they trust a program that covered up several fatal errors to keep their face.

Both women had strong cases and that's why they won. I don't get how anyone can begrudge a victim of an injustice on such a large scale.

And keep in mind that while the program saved many lives, it's vastly inferior to other European counter parts. Lab samples are sent to the states because it's cheaper than having them read closer to home.
Women generally have difficulties getting access to gynaecological doctors when an annual gyn routine exam is the standard in many other countries in Europe, where women are encouraged to go every year and can directly access consultants because there are many. The emergency waiting list for a gym appointment is 6 months, the normal one over a year.
My hometown of 300k people has over 70 gynaecologists practicing independently carrying out routine annual exams that include smears and there are 2 labs reading the results. I never waited longer than a week for results.
Ireland's South East has 3 private consultants accessible and a handful of public, working through the endless waiting lists.

The cancer was treated as soon as doctors realised that the patients had it. You have said that people weren't given cancer treatment and consequently died as a result of a cover up?? That is not true.

Mules · 07-12-2019 1:14pm

BarryD2 wrote: »

Well if there was scandal, it was in how false negatives and problems were dealt with i.e. sweeping them under the carpet and keeping the HSE mouth shut.

The whole issue did blow out of proportion and became a political football. The media jumped all over it as they love a story like this. People got easily confused between a screening programme (with expected flaws) and a diagnostic programme. The public didn't understand the nature of a public screening programme and it's limitations. That was the 'scandal'.

If you look at the eventual reports in to a lot of scandals in Ireland over the past couple of decades you'll find the real events surprisingly tame. For example, the recent Tuam report found that there were no bodies buried in a septic tank and that there was no evidence of babies being sold to America. However, as a result of media speculation the general public still seems to believe it.

The same went for the Magdalen laundries. The public perception of them was built on a film, based on a book written by someone who had never been in a laundry. The McAlise report shows the reality was very different. The real scandal was that women were doing unpaid laundry work and the launderies had contracts with state agencies. So basically government agencies were availing of free labour. No-one was imprisoned there against their will, pregnant women were not admitted and there was no physically abusive practices. It's disturbing how the general perception of the falsehoods still stand.

LirW · 07-12-2019 2:30pm

thomasdylan wrote: »

In what way is it inferior to European counterparts?

One of the most strangest things about this was that the judge in the supreme Court set 'absolute confidence' as the threshold for screening. Which means that the judge doesn't understand screening and the screening process.

The waiting times for results are long and the program only covers one smear every 3 years. Other countries test annually as part of a routine gynaecological exam that includes a pelvic scan.
The smears are read in labs in the country and you're called back in person once you gyn doctor receives the result, this takes 1-2 weeks. If it's positive the same doctor does a colposcopy because gyn doctors have their own equipment to do this. If a biopsy is required, they can do this too.
It takes a lot of pressure off the gynaecological hospital services and is a lot faster and cheaper.
It allows women to be very proactive about their health because they have direct access to a specialised doctor without detouring to a GP and then having to wait 2 or 3 months for a colposcopy if a cell change is detected.

Caledonia · 07-12-2019 3:28pm

LirW wrote: »

The waiting times for results are long and the program only covers one smear every 3 years. Other countries test annually as part of a routine gynaecological exam that includes a pelvic scan.
The smears are read in labs in the country and you're called back in person once you gyn doctor receives the result, this takes 1-2 weeks. If it's positive the same doctor does a colposcopy because gyn doctors have their own equipment to do this. If a biopsy is required, they can do this too.
It takes a lot of pressure off the gynaecological hospital services and is a lot faster and cheaper.
It allows women to be very proactive about their health because they have direct access to a specialised doctor without detouring to a GP and then having to wait 2 or 3 months for a colposcopy if a cell change is detected.

But sure they don’t even disclose audits!! So your point is rubbish.
There are no payouts for inherent false negatives there as no one gets told. So in ur country Vicky Phelan would have got ZERO €
As for detour to the GP that doesn’t show much medical understanding. A perception by you that it’s better somewhere else isn’t a fact TIL we look at survival rates.
ðŸ˜႒

Obvious Desperate Breakfasts · 07-12-2019 3:49pm

thomasdylan wrote: »

In what way is it inferior to European counterparts?

One of the most strangest things about this was that the judge in the supreme Court set 'absolute confidence' as the threshold for screening. Which means that the judge doesn't understand screening and the screening process.

She literally explains why in the post you quoted.

noodler · 07-12-2019 3:58pm

Obvious Desperate Breakfasts wrote: »

She literally explains why in the post you quoted.

Well, I missed it too so.

Obvious Desperate Breakfasts · 07-12-2019 4:03pm

noodler wrote: »

Well, I missed it too so.

That’s unfortunate.

People thinking long waiting times won’t cause cancer to run rampant - bless.

Mrs OBumble · 07-12-2019 4:24pm

LirW wrote: »

The waiting times for results are long and the program only covers one smear every 3 years. Other countries test annually as part of a routine gynaecological exam that includes a pelvic scan.
The smears are read in labs in the country and you're called back in person once you gyn doctor receives the result, this takes 1-2 weeks. If it's positive the same doctor does a colposcopy because gyn doctors have their own equipment to do this. If a biopsy is required, they can do this too.
It takes a lot of pressure off the gynaecological hospital services and is a lot faster and cheaper.
It allows women to be very proactive about their health because they have direct access to a specialised doctor without detouring to a GP and then having to wait 2 or 3 months for a colposcopy if a cell change is detected.

Sounds like vast over treatment.

Does this country involve doctors in all births too, turning a natural even into an illness?

Miike · 07-12-2019 4:25pm

Mrs OBumble wrote: »

Sounds like vast over treatment.

Does this country involve doctors in all births too, turning a natural even into an illness?

Do you know the infant mortality rate prior to medical interventions being commonplace at birth, by chance?

beer enigma · 07-12-2019 4:34pm

Obvious Desperate Breakfasts wrote: »

That’s unfortunate.

People thinking long waiting times won’t cause cancer to run rampant - bless.

I think that's reflected in the fact this thread was started at all to be honest.

Cancer is aggressive

Three weeks to Christmas and the mother of your three kids has gone, last scan all clear, repeat (eventually) oh we're in trouble, month later too late.

Cop on

mvl · 07-12-2019 4:35pm

Mules wrote: »

However, as a result of media speculation the general public still seems to believe it.

So possibly the HPV vaccine uptake would skyrocket after THIS media scandal ?

Obvious Desperate Breakfasts · 07-12-2019 4:36pm

beer enigma wrote: »

I think that's reflected in the fact this thread was started at all to be honest.

Cancer is aggressive

Three weeks to Christmas and the mother of your three kids has gone, last scan all clear, repeat (eventually) oh we're in trouble, month later too late.

Cop on

Yup. It’s very easy for people to be blasé about hypotheticals when it’s not their life on the line. Some of us are living it.

LirW · 07-12-2019 4:38pm

Caledonia wrote: »

But sure they don’t even disclose audits!! So your point is rubbish.
There are no payouts for inherent false negatives there as no one gets told. So in ur country Vicky Phelan would have got ZERO €
As for detour to the GP that doesn’t show much medical understanding. A perception by you that it’s better somewhere else isn’t a fact TIL we look at survival rates.
ðŸ˜႒

Other countries don't have campaigns like the Cervical smear tests because they are included in annual routine exams. The smear slides get sent to medical laboratories that don't only do smear tests but all sorts of lab diagnoses. These labs have regular external audits to see if the data, methods and diagnosis matches up.
You are right that there is no centralised smear auditing in countries without a national campaign, it's only individual lab audits, which would be enough to find a lab liable of a wrong result if an auditor can prove fault on their side.

Germany at the moment is transitioning the Cervical smears into a national program and the smears in this program will of course be audited, to secure a program-wide standard in quality control rather than auditing individual labs.

Also since you go on about who audited the smears of the affected women, do you know who did it? The very same company on Texas that misread the slides in the first place. CervicalCheck agreed to have the parent company of the first lab that read Phelan's smear on 2012, perform the audit in 2014.
In 2018 they suddenly stopped the audit with no statement, the suspicion arose it was because the number of slides read wrong was at over 200 and they have a reputation to lose. This is a huge conflict of interest.

beer enigma · 07-12-2019 4:41pm

Obvious Desperate Breakfasts wrote: »

Yup. It’s very easy for people to be blasé about hypotheticals when it’s not their life on the line. Some of us are living it.

I am

Obvious Desperate Breakfasts · 07-12-2019 4:43pm

beer enigma wrote: »

I am

Crap. Me too. Urgh, I’m sorry, beer enigma. I hate to hear about anyone else going through this shit. Lemme guess - you were fobbed off because you’re “too young” or “too healthy”?

LirW · 07-12-2019 4:50pm

Mrs OBumble wrote: »

Sounds like vast over treatment.

Does this country involve doctors in all births too, turning a natural even into an illness?

The reasoning behind annual screening is the nature of the cancer. Cervical cancer is in many cases asymptomatic until hitting an advanced stage. The earlier intervention happens, the better the outcome. Even simple LLETZ treatments increase a woman's chance of pregnancy complications because the cervix is permanently weakened and premature birth is more likely.
When I had mine I had a pretty long brief on what to do if I get pregnant because I'm in child bearing age.
I have a long history of cervical cell changes and am currently checked every year on the CervicalCheck program.

Also afaik in every country in the EU you're free to give birth wherever you want and in hospitals a doctor would be on the ward to check in quickly at the end to stitch you up properly.

LirW · 07-12-2019 4:56pm

beer enigma wrote: »

I am

I'm sorry to hear that, all the best.

Martina1991 · 07-12-2019 5:13pm

LirW wrote:

The waiting times for results are long and the program only covers one smear every 3 years. Other countries test annually as part of a routine gynaecological exam that includes a pelvic scan. The smears are read in labs in the country and you're called back in person once you gyn doctor receives the result, this takes 1-2 weeks.

LirW wrote:

Other countries don't have campaigns like the Cervical smear tests because they are included in annual routine exams. The smear slides get sent to medical laboratories that don't only do smear tests but all sorts of lab diagnoses. These labs have regular external audits to see if the data, methods and diagnosis matches up

Smears used to be analysed in many hospitals around the country but Ireland doesn't have enough medical scientists or consultants to provide the service you are describing in your country.

Instead of addressing staff shortages, the samples were sent abroad.

Mules · 07-12-2019 6:48pm

mvl wrote: »

So possibly the HPV vaccine uptake would skyrocket after THIS media scandal ?

Well unfortunately there's a fear about vaccines these days. It's such a shame. It's pretty amazing that we actually have a vaccine that can prevent an infection that can cancer.

beer enigma · 07-12-2019 11:51pm

Obvious Desperate Breakfasts wrote: »

Crap. Me too. Urgh, I’m sorry, beer enigma. I hate to hear about anyone else going through this shit. Lemme guess - you were fobbed off because you’re “too young” or “too healthy”?

It was actually my wife, misdiagnosed and by the time they realised it was too late. First Christmas for myself and our kids and I'm dreading it.

The OP's statement of "Just seems for something that was portrayed as being a massive thing there’s very little in it" makes my blood boil....

ONE is too many.

Mrs OBumble · 08-12-2019 2:00am

beer enigma wrote: »

The OP's statement of "Just seems for something that was portrayed as being a massive thing there’s very little in it" makes my blood boil....

ONE is too many.

One is too many but on a population level some are unavoidable. There will always be some false negatives, and some treatment failures.

As long as preventative behaviour is socially unacceptable, there will be lots of cases of STDs and consequences.

All of which is no comfort to you on an individual, I know. Sorry for your loss.

noodler · 08-12-2019 2:02am

I'm still not sure if everyone realises that a screening process is not scientific.

beer enigma · 08-12-2019 3:02am

Mrs OBumble wrote: »

One is too many but on a population level some are unavoidable. There will always be some false negatives, and some treatment failures.

As long as preventative behaviour is socially unacceptable, there will be lots of cases of STDs and consequences.

All of which is no comfort to you on an individual, I know. Sorry for your loss.

Yes I accept they're always a risk of a wrong result but this wasn't one case, this was screening farmed out to the cheapest tender and many many cases.

And wholly agree on prevention side

beer enigma · 08-12-2019 3:03am

noodler wrote: »

I'm still not sure if everyone realises that a screening process is not scientific.

Nothing is perfect but if you buy cheap tyres there's a risk you will crash.

They cut costs and we pay the price

Jinglejangle69 · 08-12-2019 3:05am

beer enigma wrote: »

It was actually my wife, misdiagnosed and by the time they realised it was too late. First Christmas for myself and our kids and I'm dreading it.

The OP's statement of "Just seems for something that was portrayed as being a massive thing there’s very little in it" makes my blood boil....

ONE is too many.

Who do you blame?

Cervical Check...No Scandal..

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