Nuchal scan against will

[user1466605130]

Just wondering if anyone has a view on this and AIBU...

DP and I gave some serious thought and discussion as to whether to have screening for Downs syndrome and for our own reasons decided that it wasn't right for us.

I had my dating scan recently and was asked if I wanted it. I said no - I had decided to decline. The doctor who did the scan said this was fine and accepted our decision.

Whilst there I agreed to have blood taken as part of a research study the hospital are doing looking for possible early indicators of pre eclampsia. On my way to have the bloods the doctor explicitly said, "the bloods are for the research, not the Down's syndrome screening."

Imagine my surprise when today I got home from work with the results of my Nuchal scan including NT measurement and blood markers in the post.

The result has come back as low risk and I am grateful for that but furious as I didn't want this test in the first place and consider it very troubling that this was carried out when I expressly said and it was perfectly understood that I was declining it.

Not sure what to do next but I am very cross. Has anyone been in a similar situation?

R

I am the OP - spoke to my midwife today about it and she was mortified and wants to take things further herself.

I've raised a complaint through the complaints department and contacted the research project lead.

Thanks for people's thoughts and support - it has helped to clarify my thinking.

R

Totally supportive of your course of action. It is a big deal, and a number of people on the thread have recognised that. I am not at all surprised that your midwife was mortified. Most, if not all of us, involved in clinical care and/or research within the health sector would rightly be.

The scaremongering earlier about affecting the study is complete, unfounded nonsense!! But it's clear you already knew that! All the best and hope the rest of your pregnancy goes smoothly. And, I hope you receive some satisfactory answers to your enquiries and complaint.

On second thoughts - perhaps satisfactory is the wrong word to use. I hope you receive answers that indicate your complaint has been taken as seriously as it should have been.

Even if you have made the decision to not know the results, it's very important that the doctors are prepared at the birth of your child for any problems to ensure the best chance for survival, if (God forbid) something was wrong, early intervention is the best thing for your baby.

There is no way that doctors can perform tests without consent just because they might like to know the results themselves. Consent is necessary for a reason.

For my first child I refused an amnio as I was sure I would not terminate for downs. The doctor told me it might be helpful to do the test anyway so as to be prepared for problems. I still refused as I did not want to worry during pregnancy. That was my right and the doctor's wish to know did not outweigh my wish not to know.

The hospital either made or mistake or ignored the OP's wishes. Either way it deserves a complaint, and the integrity of the study is not the OP's concern.

As someone said upthread, there really does seem to be an attitude to pregnant woman/new mothers of just put up with any old shit and be grateful your baby is fine.

Absolutely agree with canyouforgiveher - informed consent is the bedrock of medical ethics and research ethics and rightly so. I have now spoken to a few senior people about what happened and they are equally horrified and encouraged me to take things further with a formal complaint.

Psychologically having someone do something against my well left me feeling vulnerable and anxious about what else might be done. Complaining strongly and having senior staff validate my concerns has made feel a good bit better!