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

(86 Posts)
LillyBugg Fri 25-Nov-16 20:11:23

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?

Northernlurker Sat 26-Nov-16 00:12:27

It sounds like they have done the test anyway. I would contact your midwife and complain if needed because you didn't consent to the rest and it should not have been done.

Bloodybloodyheckers Sat 26-Nov-16 00:13:37

shock no not right, can you imagine if it had been positive!

missnevermind Sat 26-Nov-16 01:07:05

We decided with my midwife that we would not be testing for downs syndrome as no matter what of the results we would not affect the outcome of the pregnancy.
If it had been sprung on me that the risks were high that would really have affected my thoughts for the rest of the pregnancy

Out2pasture Sat 26-Nov-16 01:31:58

What testing did you consent for? Was it a blood test (in which case you should have declined) or the nucheal screening which measures other important factors as well?
Yabu, if you think all the other health care providers (lab, u/s techs) will be aware of your wishes. Some tests may be routinely done regardless of your request as due diligence on their part.

LillyBugg Sat 26-Nov-16 06:54:48

I completed the wolfson form clearly indicating that I only gave consent for testing of patau's and Edwards. I did not consent for the test of Down's syndrome. I of course now don't have the form to see if it specified any differently as to what the blood test looks at Out2 but I certainly don't recall any information which said I shouldn't have the blood test if I didn't wish to test for Downs Syndrome.

Out2 this is not AIBU. I thought the whole point of the consent form was to inform health care providers exactly what my wishes were, therefore even if this was AIBU I would argue your point since I DID and DO expect hcp's to be aware of my wishes in this situation. As far as I know none of these tests should be routine, hence the form being in place.

It does sound like an error has been made then. I think because it's screen negative then I'm okay about it (ish) but had it have been positive and given to me in error I would be devastated. Not because of a child with Down's syndrome I must add, but because we have chosen that we do not need this information to make informed decisions about this pregnancy.

ZeroDarkHurty Sat 26-Nov-16 07:01:55

Was this for a Harmony/NIPT test or for a combined test (or quadruple)? Did they give you a risk factor (eg 1:10000) or does it say 'negative'? If it was the combined test they should give you a risk ratio rather than 'positive' or 'negative', as it is not a diagnostic test but rather an indicator of the level of risk given the scan, bloodwork and age. In that case, negative could simply mean they didn't calculate the combined results for Downs Syndrome.

LillyBugg Sat 26-Nov-16 07:15:52

It wasn't the harmony test, it was the standard nhs 12 week scan with screening. The template letter told me screen negative, but my report gave me an exact risk factor. E.g. 1 in xxxxx at term.

Basicbrown Sat 26-Nov-16 07:19:51

I think yabu. The standard test is for all three. If you decline it (as I did for both pregnancies) then you don't test for Edwards or Patau either. The more serious ones you would see something wrong on the 20 week scan anyway.

Autumnsweater Sat 26-Nov-16 07:30:11

YANBU. It doesn't matter if that's the standard testing, if they gave you that option then it must be available. They should not have tested you for anything against your wishes - basic medical ethics! And also consent forms are a form of contract so they have broken a contract with you.

Lab reaches, sonographer etc should be reading consent forms before they run tests.

Please complain this should not happen.

LillyBugg Sat 26-Nov-16 07:30:44

I'm afraid basic YABU. 1. This is not AIBU!!! And 2. the test has changed over the past two years so now actually you can choose. When I had my son in 2014 it combined all three. Now you can split the testing out and choose. So I did.

Autumnsweater Sat 26-Nov-16 07:33:15

It is NOT due diligence to run a test against a patient's wishes and in my profession would be classed as professional misconduct. Any healthcare provider should be reading consent forms before doing anything.

LillyBugg Sat 26-Nov-16 07:33:51

Thank you autumn. The more I think about it the more I think I will complain.

I mainly just wanted to check that it wasn't standard to give you the result anyway if it was negative, regardless if you had chosen to have that test. Which as DH said doesn't make much sense because if we have another baby and it didn't have the DS result on it then I would know it is positive.

CakeTimeAgain Sat 26-Nov-16 07:40:01

As you didn't consent to the test, it shouldn't have been done in the first place. Therefore nobody should know to put it on any report. The outcome is ok for you but they have made a mistake. It would be perfectly reasonable for you to highlight this as the lab procedures are obviously not in place to cope with people consenting to some of the tests. It could easily happen to someone else with a different outcome.

Basicbrown Sat 26-Nov-16 07:41:38

Sorry it came up on 'active threads'. But I still think all's well that ends well and you either want testing or you don't.

JosephineMaynard Sat 26-Nov-16 07:42:16

This doesn't sound right.

I wonder if they sort of went on autopilot and automatically did the Downs testing too because most women consent to that bit as well?
That's not an excuse though, they should have read the consent form properly.

If it is the case that you have to consent to testing for Downs to be tested for Edwards and Patau, then that should be made completely clear at the point where you're asked for consent.

Elvander Sat 26-Nov-16 07:49:16

As a pp said, the results for Downs Syndrome screening are expressed as an odds ratio rather than positive or negative. This sounds to me like a poorly worded way of saying that the screening wasn't done.

LillyBugg Sat 26-Nov-16 07:53:41

No elvander I did get an exact risk ratio for Downs Syndrome as well as the wording 'screen negative'

Elvander Sat 26-Nov-16 08:00:12

Ah, well in that case definitely complain - your wishes with regards to screening should always be respected.

sparechange Sat 26-Nov-16 08:36:23

It's obviously unfortunate this has happened, but bandying around things like 'consent' and 'professional misconduct' are really OTT...

When you asked to be screened for Edwards and Patau, you've asked them to take your blood and measure it for 3 markers (possibly 4 depending on where you are)

The lab has tested your blood for those, and found the level of each one, which has been reported. You have consented for this test and the levels are presumably printed somewhere on your letter?

Obviously these levels have been compared to the known levels for trisomy pregnancies and normal pregnancies, and you've been given your risk ratio.
Someone has clearly made a mistake and given you the risk ratio for Downs as well as the others, but it is a stretch to say they've 'performed a test without your consent' in doing so, when all they've done is a quick calculation of your HCG levels.

To the PP who said 'imagine opening the letter if you have tested positive for Downs' - it doesn't work like that...
For starters, you get a call and not a letter. Secondly, they will tell you that you've tested as high risk but it isn't conclusive and give you your options for further testing, and thirdly, it is rarely cut and dry at this stage which trisomy it is, so it would be highly unlikely they would be able to promise you they can investigate only Edwards and Patau, and not potentially end up with a diagnosis of Downs. Lastly, if you were carrying a Downs baby and didn't find out with the testing at this stage, it is almost certain that you would find out something was wrong at 20 weeks, when soft markers were found at your anomoly scan. Yes, I know there are some women who don't find out until birth, but those are increasingly rare as scanning technology improves. So unless you are going to refuse all scans, you will ultimately know eventually...

Congratulations on your healthy pregnancy. Surely that's the thing to focus on? In he grand scheme of things, complaining that you've been told your baby is healthy just seems... odd

Helbelle75 Sat 26-Nov-16 08:46:55

The same happneed to us. It's not worth sayang anything for us but I was surprised, particularly as the sonographer conformed our wishes at the scan.

NameChange30 Sat 26-Nov-16 08:52:47

I understand that you are unimpressed with being given the results when you specifically stated that you didn't want the screening for Down's - it's not acceptable that they disregarded your wishes.

However, please stop going on about "positive" and "negative" results. The NHS screening doesn't give a positive or negative, it just gives a risk factor. There is no way anyone would get a letter to say that their baby has Down's. You would have to consent to an amnio or CVS in order to get a definitive result. (The other option would be to pay for the Harmony test or other NIPT.)

By all means complain that you were given the results when you specifically asked not to have the screening. But don't blow it out of proportion. Be thankful that all is well.

LillyBugg Sat 26-Nov-16 09:25:02

I am thankful and of course I am not going to complain that I have a healthy pregnancy. I'm not sure I can see anyone 'going on' about positive or negative results. I very clearly understand what the various different outcomes of this testing could be. I made sure I fully understood it and made a choice based on the information I was given. However that choice was then disregarded, most likely by human error.

I think a previous pp makes a very valid point that actually it is worth highlighting that this has happened because clearly there is a flaw in the process for me to have received this result. So whilst I am NOT complaining that the result was 'screen negative' I do think it is worth highlighting that their process does not work so that it can be reviewed and not repeated in the future.

KittyandTeal Sat 26-Nov-16 13:02:33

It doesn't sound right but I imagine that if you'd consented to t13 and t18 testing there was simply a mix up at the lab and they've reported on all.

Tbf if they've not reported the ratio that might be what they consider not reporting the result. I'd call your screening midwife to start and ask. It may be that you have expected the test to have been reported in a different way to it being done.

Namechange while I agree, the combined doesn't give a positive or negative screen in the sense that is diagnoses many trusts report with the phrase 'screen positive' or 'screen negative'. This is wrong, inaccurate and worrying for parents but it is how things are sometimes reported (I know this because after loosing dd2 to t18 but screening for ds was an automatic letter saying 'screen positive' for t18 with a very, very low risk ratio. Reported this way simply because of my high risk and previous loss. Luckily my wonderful screening midwife got to it first, called and held the letter as I refused to have a bit of paper in my hand held notes that said screen positive t18, for my own sanity)

Booboostwo Sat 26-Nov-16 14:14:23

The OP has been very clear I don't know why posters keep misunderstanding her: she opted out of Downs testing, as was her right, but was tested anyway and told of the results.This is totally unacceptable and should not have happened. I would urge you to complain, not because you want to get anyone necessarily in trouble, but to make sure they are aware of the mistake, identify why it was made and make sure it doesn't happen again - otherwise they are making a mockery of the consent process.

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