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Antenatal tests

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Original poster

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

85 replies

LillyBugg · 25/11/2016 20:11

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?

OP posts:

sparechange · 26/11/2016 16:36

booboo
You are either misunderstanding what the test is or misunderstanding what constant means to say she was 'tested anyway' after opting out.
Please stop trying to inflame something that the OP ha said isn't a big deal

FuzzyOwl · 26/11/2016 16:41

I think you need to find out whether you actually were tested or not. It could be that the numbers are based on what information they had without testing (e.g. your age gives an automatic risk number) and your blood wasn't screened, which is why it says negative.

Original poster

LillyBugg · 26/11/2016 17:21

I think from my letter and report it's quite clear that I was tested - which has been without my consent as I was very clear on the form. After reading all the responses and thinking about it, I intend to contact them and highlight the error, not complain, but just bring it to their attention so hopefully it won't happen again.

OP posts:

MoreMortificado · 26/11/2016 17:27

I also refused it abs received a similar letter. I complained and was told the ratio is based on age. Screen = negative is used for no test/declined. I don't know if that is true or they just bullshitted me but that's how they explained it.

MoreMortificado · 26/11/2016 17:28

However I should also say I declined Edwards/Patau too so they said the same thing. It sounds like you didn't and they also say the same? If so, it sounds like I need to raise it again...

Shallishanti · 26/11/2016 17:29

OP you should complain, they carried out a procedure you have not consented to. Contact a supervisor of midwives. As a PP said, consent is fundamental to medical ethics.

MoreMortificado · 26/11/2016 17:30

Third message! Sorry! I just mentioned this to DH and he said they actually explained it as the screen result was based on solely age, not the ultrasound and that was why it said screen negative. Sorry, I misremembered.

sparechange · 26/11/2016 17:41

Shallishanti

Good grief read the thread....

Shallishanti · 26/11/2016 17:59

what makes you think I haven't??

Booboostwo · 26/11/2016 19:41

sparechange I am not misunderstanding anything. I am a philosopher and have worked for years on medical ethics with doctors; revealing sensitive information about genetics to patients who have specifically asked not to know is unacceptable. Whichever way you look at it, even if they 'merely' presented the age related statistical risk they should not have don even so. All the paper should say with respect to Downs should be ' screening declined'.

Similar situations crop up when only some family members request genetic screening for inherited condition while others decline and actively do not want to know. Further complicated by cases where finding out the status of one patient immediately tells you about the status of the other.

Branleuse · 26/11/2016 19:54

why would you complain about having extra knowledge? I mean sure, you wouldnt want to terminate for downs, and you didnt go out of your way to have the test, but I really think its bizarre to be annoyed that you now know your baby doesnt have downs

Shallishanti · 26/11/2016 20:03

it doesn't matter if you don't understand the OP's POV Branleuse !
she made a decision and is entitled to have it respected- really nobody else's business why she made the decision.

sparechange · 26/11/2016 20:13

what makes you think I haven't??

Because you said they've carried out a procedure OP hasn't consented to
When OP has said she did indeed consent to the procedure of having her blood taken and tested
What she didn't consent for is the interpretation of those bloods to be given to her, but that is in no world the same as not consenting to a procedure. And you sound a bit hysterical when you suggest it is akin to her being pinned down and stabbed with a needle

Branleuse · 26/11/2016 20:20

well its on mumsnet, and came up in my active threads, so im assuming it can be discussed.

fair enough to not want any tests done, but to want testing for some trisomies, but not another, and to be cross because youve accidently found out your child doesnt have downs, just seems bizarre. Noone has hurt anyone

Booboostwo · 26/11/2016 20:35

sparechange you are misunderstanding consent, consent is specific. The OP can consent to having her blood taken and tested for Edwards and Patau's but not for Downs. The way this limited consent can be respected is by either testing for the first two but not the third or, if this is not possible, testing for all three but never communicating the results of the Downs to the OP. This second option would require anonymisation of the tests so that no one in direct contact with the OP would know the results either. This is pretty standard treatment of screening and confidential information that is generally set out in British law.

Branleuse the point is that the OP is not asking whether she should ask for the results, so the reasonableness of not wanting to know is not relevant. The OP does not want to know, made this clear and now she knows. Something has gone very wrong with the screening procedures.

Basicbrown · 26/11/2016 20:37

The thing I don't get is the policy of options they are giving. I do kind of get where the op is coming from as she didn't ask for those specific results although the actual test is part of the Patau/ Edwards screening. If they offer the option then it should be there.

BUT if the baby had Downs then you would probably get screen positive for Patau/ Edwards anyway as the indicators are similar. So you can't separate them like that as the next step would be CVS/Amnio where you'd be told it was Downs .It is complicating something that people misunderstand anyway. It's just bizarre NHS policy imo.

Original poster

LillyBugg · 26/11/2016 20:38

Wow this is getting all a bit heated...

I'm not annoyed that I now know my baby is unlikely to have Down's syndrome. I'm annoyed because I made an informed choice, not giving consent for the test, and for some reason that has been ignored and the test has been completed. I wouldn't even say I was annoyed to be honest! Perhaps more concerned about how this could have happened and if I even had grounds for raising it in the first place.

Those saying I'm cross because the result is negative are not reading my posts properly.

OP posts:

Basicbrown · 26/11/2016 20:39

And Branleuse she doesn't know her baby doesn't have Downs. It is only a fairly unreliable screen.

sparechange · 26/11/2016 21:19

Booboostwo

No, you are misunderstanding the test. They don't 'test for Edwards' or 'test for downs'

They analyse blood for a number of chemicals and record the levels found.

Those levels are printed on a letter and sent to the OP. It isn't anonymised. She has consented for that test and asked for the results along with an interpretation of those results in relation to their potential correlation with trisomy pregnancies

No OP's case, she only wanted interpretations, analysis, calculation, whatever you want to call it, for 2 of the 3 trisomies but due to what is most likely human error, she got all three.
But no extra test was carried out.

Her DH could have seen the letter and reported blood results, and put them into a website to get the same risk profile.

Mum2jenny · 26/11/2016 21:29

If I were pregnant ( which at my age is very unlikely) I would not consent to any tests as I would never have terminated.

OP, I would complain in your shoes as I think it was a serious non compliance issue. You wanted testing for 2 issues and not the DS one, your free choice, I'd be v pissed off in your shoes and I would complain

Izzy24 · 26/11/2016 21:32

Exactly what Boo says.

cavatron · 26/11/2016 21:37

My SIL had this happen to her - requested no nuchal test, sonographer told her measurements and appeared alarmed; sonographer stumbled after being told they had made it clear they didn't want the nuchal testing (this was written in their notes).

Their beautiful son was born with DS - she never enjoyed her pregnancy. Rather have not known and not spent the whole time worrying (as per her request!)

Autumnsweater · 26/11/2016 21:42

spare change the point is that all 3 interpretations shouldn't have been on the letter as it was not what the patient consented for. If human error then this needs pointing out so it is less likely to happen again. This is a serious medical ethical issue that healthcare professionals should take seriously.

fabulous01 · 26/11/2016 21:43

Please put this into perspective. You have a healthy pregnancy.
Some girls don't

Autumnsweater · 26/11/2016 21:48

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.

And anyway, just because worse things happen to other people doesn't mean that smaller issues should be ignored.

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