Does this sound right? We chose NOT to test...

[LillyBugg]

for Downs Syndrome and yet my report has got the result on it for DS. Now the result is screen negative but I can't of feel that's not the point. We specifically chose not to do that part of the screening. The template letter includes Down's syndrome, patau's and Edwards, as does the full report. Has an error been made or is this standard practice because it was negative?

Cavatron
Sorry but that story is complete nonsense.
A sonographer can't diagnose DS from the nuchal measurement

And if the measurement was so big as to be a sure fire indicator of DS (which is implausibly unlikely), the baby would almost certainly have had other soft markers which would have shown up at the 20 week scan

At which point she would have had it explained that there were soft markers which could indicate a number of issues, including downs, and would she want further testing.

Of course she could have said no at this stage but most people realise that a DS pregnancy and birth needs more attention, so it is sensible to at least make sure you're getting the right level of medical care even when termination isn't at all in the frame

I appreciate that this thread is showing up in 'active' but this is still in antenatal tests.
Posters pitching up with no understanding of antenatal tests, or worse still, with made up scare stories is helping no one, and not in keeping with the spirit or purpose of this topic

sparechange my understanding of the test is irrelevant as I accounted for both possibilities. If the tests can be separated , they should have done only the two requested. If there is one test they should have separated the results and communicated only two of them as requested. It is not complicated but someone messed up; they shouldn't have, they should be made aware of the error and make sure they do not do it again. There could well be a procedural problem here that would affect other people.

Understanding what other people posts and understanding the basic ethical and in most cases legal requirements with respect to consent and confidentiality is also important spare. As is informing posters of their rights.

fabulous and what if somebody gets sent high risk results that they didn't ask for? The point needs raising precisely so those people don't have to have that happen.

Seriously, is no one reading this thread before replying to it?

Once again, high risk results do not get posted out. You get a phone call and the option of discussing things in person or over the phone. You don't open an envelope with the news - you're not collecting your GCSEs, ffs

Why are people with so little understanding of antenatal tests ploughing in to the antenatal testing topic?

Maybe I should explain. I was one of those who didn't get the call. I got the news at my scan. I saw the bad news room.
So again I repeat. Put this into perspective. There is a healthy baby.

Again you are missing the point: people who do not want to know do not object to the letter but would be OK with the telephone call! They just don't want to know period. Ideally their health care professionals should not know either as they may let slip information.

Do you work in this area? I am a bit worried about your lack of understanding of the ethical and legal obligations with respect to data confidentiality.

Apologies my last message was a reply to spare.

booboo
No one is disputing whether a mistake was made. As I have said from my first post, yes, there has been an oversight and it shouldn't have happened

But the actual practicalities of wanting to rest for 2 out of 3 trisomies are thus:
The triple/quad test uses one blood sample and one set of results which are posted out after the test. Many posters, including you, seem to think 3 separate tests are carried out in a lab and therefore an additional test has happened. This isn't the case.

The results will be displayed as a number and then the normal range for that level. So even without wanting the interpretation of the result, it will be obvious when a result falls outside the normal range.

Secondly, this test doesn't diagnose. It indicates a risk of a potential problem. And with trisomy problems, it is rarely cut and dry at 12 weeks which problem it is.
So assuming someone who doesn't want the downs result tests high risk for something else, it doesn't mean the baby doesn't have downs. It could be Edwards or Downs. And only further tests will clarify which, if either.

Thirdly, this test is only one of a number of screenings that could pick up Downs. If you don't want the test because you definitely don't want to know either way, then what do you do at a 20 week scan?

I appreciate as a philosopher you are coming at this from a different viewpoint.
But as is very clear from your posts, you know very little about testing and are whipping this up because you know so little and are filling in the gaps.

I had no idea about the ins and outs this particular test prior to your explanation booboo. But I do understand medical consent. I am a veterinary surgeon and as such deal with the practicalities of medical consent daily.

If somebody has not consented to being given this information, they shouldn't be given it. If it is impossible to separate the results, then that should be made clear at the point of consent so the patient makes informed consent.

If somebody is not given the information to be able to make informed consent or if they are given information which they asked not to be given then there are serious legal and ethical implications that every healthcare practitioner should be aware of.

If in fact you can't be told 2 without the 3rd then that needs to be made explicit prior to testing so you can choose whether to be given all the results or not have the test at all.

I don't get why you have a problem with this? Either way the people involved need to be made aware of this issue so that things can be made clearer in future?

And your third point should be made explicit at the time of the 20 week scan - " do you consent to this knowing that we will give you information regarding whether your baby has Downs syndrome which you previously did not wish to know about, or would you rather not have the scan.." informed consent, patient chooses knowing all the main potential outcomes.

If you don't have even a basic understanding of the most common antenatal test, what compelled you to visit the Antenatal Testing topic?

Why does everyone have to complain? Why can't a polite letter be sent pointing out the error? Why do we all want to destroy one another?

Wow... what a discussion over a healthy pregnancy. Some of us didn't have this. I understand the issue around the mistake with the testing but is this really the right place for this with so many ladies on here having had bad news?

spare the NHS website clearly states that patients have options with regards to screening including to refuse consent for Downs screening but get screened for Edwards' and Patau's - feel free to contact them to tell them they have misunderstood how screening works. In the meanwhile anyone who refuses consent for screening should have that respected.

natb88 I am very sorry for anyone who is having bad news. This discussion does not take away from their hurt and the difficult decisions they are facing, it just raises other aspects of the screening process. These aspects are significant in themselves and in a wider context because they involve patient autonomy, data handling, and options surrounding disability. I don't think the discussion is useless purely because there are much worse situations to be in with respect to screening.

sorry forgot the NHS link here it is for anyone who needs support in having their choices respected:
www.nhs.uk/Conditions/pregnancy-and-baby/pages/screening-amniocentesis-downs-syndrome.aspx

bugsy that's all I'd suggest, but that letter will still be handled by a complaints department, just a matter of terminology

boo
What on earth are you going on about? I honestly don't think you are actually reading this thread properly, or are deliberately being a gf
Maybe AIBU is a more appropriate place for you than this topic

spare I don't understand the problem.. do you think that people shouldn't have their decisions respected in this area? Do you disagree with the NHS guidelines?

autumn
From my very first post on this thread: "It's obviously unfortunate this has happened"

Did you actually read that NHS link? And what it says about the 20 week scan?

For the very final time, in words of few syllables for those who have struggled to keep up...

• it is unfortunate this has happened at OPs wishes weren't followed
• however the nature of the screening test and the way the results are sent (as a number alongside a normal range) AND the fact she has requested the Edwards and Patau screen mean it is slightly nonsensical to believe you can completely avoid any insight into Downs risk
• and even if her wishes had been respected at this screening (which they weren't, no one is disputing this), it would have been pretty obvious at the 20 week scan whether the baby has Downs or not
• in the grand scheme of things, it probably makes more sense to OP to focus on the good news she has had rather than a very small and pretty inconsequential human error

And finally, those posters who have so little understanding about antenatal testing as to not even understand how the triple/quad test works... go and have a read through some of the other threads on this topic and see what other people are going through.
Then maybe take yourself off to topics where you can add something valuable to the debate rather than somewhere where your lack of understanding coupled with dogmatic insistence that you know best doesn't derail sensitive topics and confuse and upset people here looking for help

The way the combined screening is done it would be impossible to not come across a risk factor for Down's syndrome if you are testing for t13 and t18. The problem here is the reporting of the risk for the op.

I honestly think a genuine mistake has been made. However, as much as it wouldn't be reported it would be obvious to anyone with a bit of knowledge that even with low risk t13 and t18 results you'd be able to see a high risk downs result in the hormones they report on.

Granted the op wouldn't look into it so possibly wouldn't know but you'd have to make it clear at every appointment that you don't want to know. Any doc glancing at hormones being a bit off would be able to notice a high risk downs marker.

TBH I think offering to report on t13 and t18 but not t21 is opening the hospital/trust up for mistakes and issues in the screening.

spare your posts are dismissive of other people and the only ones that are inappropriate for the discussion. You are having problems understanding that the OP did not want to know the information, of course the information would become known to someone, but it should not have to be known to her. This is not just 'unfortunate', it wasn't a natural disaster, it was someone's mistake and they should be made aware of it to avoid it in the future.

booboo

You are so out of your depth with this topic

Read what I've said and read what kitty has said, and have some perspective over why this is not some great professional misconduct issue

Kitty does more than anyone else on this site to help and support people going through stressful times with testing and the aftermarth and has also explained the limitations of what OP had asked for in 2 out of 3 trisomy screens, which you are repeatedly failing to grasp

With all due respect, you don't even have the most basic working knowledge of the tests and how they are carried out but have blazed in like a bull in a china shop and tried to whip up outrage.

Now is the time to back down and back away on this. You'be got the wrong end of the stick on this and have carried on digging yourself into a hole

Like I said, go and have a read of other people's stories on this topic and then come and tell us that what happened here is more than an unfortunate human error...

I really hope that you are not a HCP, sparechange and that your knowledge of antenatal testing is simply the result of extensive googling as you have a poor grasp of medical ethics.
This seems the most appropriate board for the OP's question and the fact that sadly other people have more upsetting things to discuss doesn't mean she can't raise her question. I hope OP is reassured that some people think this mistake, whatever it's cause is worth bringing to the Trust's attention.

Shalli I'm pretty sure that sadly, sparechanges knowledge on screening process, like mine, comes from having first hand experience of having to know these things.

I have what I'd say is a 'lay persons' knowledge of screening, however, I do have what I'd consider (and my obstetrics doc commented on) a pretty decent grasp of the screening results and soft markers for three major trisomies. I had to/wanted to understand the test results and so they were very kindly explained to me but a fetal medicine specialist.

Yes it was an error that the op had risk reported to her for t21. However, I know certainly in my trust, the screening letter doesn't just give a screen positive or screen negative result. It also provided the hormonal levels and the nt measurement alongside the MoM. If you have the results for t13 and t18 reported, even at low risk you could easily see from the report if the papp a was low and the hcg was high.

Obviously the op wouldn't nesessarily know that, and wouldn't be interested in finding out as she didn't want it reported. However, the letter sits in your notes. It would be tricky to go a full pregnancy without a hcp not noticing and accidently commenting. Unless your notes are somehow marked clearly on the front that screening results are not to be adressed with the patient (I genuinely don't know if something like this exists, it may well do as I know they mark your notes in subsequent pregnancies after a stillbirth or late loss)

I don't think anyone is suggesting it's not worth informing someone, just that you can see, in this situation or partial reporting, that mistakes are easy to make.

spare You don't have a basic knowledge of the law or patient rights. Nowhere did I say that this is a case of gross professional misconduct or tried to whip up outrage - the only one being outrageous in their posts and manner of conduct in this thread is you. If you would like I can recommend a number of places you could get a basic introduction to medical ethics, most will count towards your continued professional development if you are a medical professional.