To think that recording pregnant women's drinking is pointless as well as invasive?

[Hardbackwriter]

If I've understood correctly, NICE have proposed that the mother's consumption of alcohol should be recorded on a child's medical record, to help with any future diagnosis of fetal alcohol syndrome. The British Pregnancy Advisory Service (quoted in this article: www.theguardian.com/lifeandstyle/2020/sep/16/plans-to-record-pregnant-womens-alcohol-consumption-in-england-criticised) have pointed that this breaches data protection rules, and that "Women do not lose their right to medical confidentiality simply because they are pregnant".

I have sympathy with this view, but I also just fundamentally think that it's quite pointless to record this information as it's surely self-reported? Women who have been drinking heavily are unlikely to admit to it, surely (and maybe even less so if it's going to go on their child's medical record for all time)? Are you not going to miss a lot of cases of FAS if you're ruling them out if the child's record said the mother swore she didn't drink, or did so only moderately? I assume there's a lot of under-reporting already - I've seen people on MN insist they know someone whose child has FAS 'even though she only had a couple of drinks in the whole pregnancy'; I'm guessing in the vast majority of cases the mother is drastically underplaying what she drank. Maybe she's even convinced herself.

I just can't see the point of this, and worry that it'll put off someone who could benefit from help with alcohol dependency in pregnancy seeking help if they know it'll go on the child's record. AIBU?

"Fas is a massive problem, I think more people have it than autism and other disorders put together"

really? I would be interested to read about that if you can point me in the right direction @Muminabun.

@MagpieSong, thank you for that thorough and considered reply. Lots to think about.

@Chicchicchicchiclana it is very recent and from a children’s or adoption charity. I was shocked to see it. I am wracking my brains and I will post a link when I find it.

I agree with it, I know a young lady with FAS, she has severe learning difficulties, her feckless alcoholic mother abandoned her when she was a baby, luckily she was brought up by a relative who is now elderly, when the elderly relative dies the young woman will be put into residential care where she will be wondering where her carer has gone, she will spend the rest of her life in residential care which is often good but is sometimes very bad, she could be neglected or abused. What a waste of a life, something that is so easily prevented by not drinking alcohol for 9 months. Seeing this young woman as a child years ago was enough to stop me having a sip of alcohol as soon as I came off contraception. I have no sympathy for the young ladies mother.

@Chicchicchicchiclana Adoption UK, May 2018, Andrew Skeates. Sorry I can’t seem to post a link the article is eye opening.

@5amonSunday

No one is MADE to do anything, but we would not be responsible healthcare professionals if we did not give the risks

Asking and offering advice/risk information is completely appropriate. I remember this at my booking in a year ago and I expected it, just like at any other initial health appointment.

Recording the mother's alcohol use on the child's health record is really intrusive though and will not encourage engagement or an honest answer, which would be far more helpful to HCPs in reducing harm than an intervention like this.

Yep. Too many people aren't addressing the actual issue here, and are instead telling us whether they approve of pregnant women abusing alcohol and/or whether it's appropriate for a midwife to discuss alcohol consumption per se. Neither of those are what this is about.

On the point of you not being offered the CO test, I'm a (middle class) doctor in my 30s and they asked me. It's best practice to take the measurement and record in the notes. Ironically it was your midwife in the wrong, not your sister's.

- what would be helpful is for there to be awareness raising (advertising, GP leaflets etc) explaining that NO alcohol consumption during pregnancy is safe. At the moment even doctors tend to say “a glass or two won’t hurt” when the fact is that even a single glass can cause serious harm to the baby if drunk at the wrong stage of early pregnancy.

Is that a fact though?

I have no sympathy for the young ladies mother

She had her reasons for drinking. Addictions don't just go away during pregnancy, and for some people abstinence from alcohol feels impossible. Asking probing questions won't help.

The only thing that might improve outcomes for child and mother is engagement with health services, and the threat of recording alcohol use on child notes will not help this.

I find the evidence on alcohol in pregnancy confusing. I know there is apparently no safe level, but it seems like that's to do with not being able to prove a negative.

Yes, it is a fact that Chief Medical Officer advice is now that no alcohol is the only safe amount in pregnancy. It is also the case that FASD is 3 - 4 times more prevalent than ASD in the UK.
People claim to be educated and know about it but on this thread I've seen so many myths perpetuated already - that only alcoholics are at risk, small amounts don't count etc. The point is that women are questioned and it's noted if mothers smoke during pregnancy, but the same does not currently happen with alcohol use and this has been shown to have more of a lasting effect on babies. It's not always the case that mothers know not to drink, some are ignorant to the risk, and if this helps to support them to prevent harming their child then wonderful. Like drugs and cigarettes there is no punitive response to admission of use, but there should be offers of support.
If people are genuinely interested in learning more about the condition then you can read more here: www.adoptionuk.org/factsheets-fasd
And please do look up to hear from individuals living with FASD. It's hard to be flippant about the effects of it when you've heard directly from someone living with it.

So, as I understand, fetal alcohol syndrome is less common that ASD but fetal alcohol spectrum disorders are more common than ASD?

Reading further though, FASD seems to be a potentially problematic concept with blurry diagnostic boundaries.

I always find interesting how alarming people find this stuff, with language like invasive, intrusive, infantilising women. Maybe I am unusually chilled but it just doesn't bother me in the least. I'm middle class & was in my thirties when having my kids, I was asked about my relationship with my husband etc (those questions designed to flag up cases of abuse etc),about how much alcohol I had, asked to puff into the co2 tube. I wasnt bothered by any of that and am not really fussed about who sees my medical record.

I suppose the other way to view it is to record it as the childs alcohol intake...

@xtinak

I find the evidence on alcohol in pregnancy confusing. I know there is apparently no safe level, but it seems like that's to do with not being able to prove a negative.

And the ethical concerns.

You cant exactly conduct a proper test shedule of varing dosages of alcohol administered to pregnant mothers and control groups.

you can only go off what happens naturally and what is reported. I'd guess a lot under report and completley ruin the lower end of the data.

@xtinak

Reading further though, FASD seems to be a potentially problematic concept with blurry diagnostic boundaries.

Dont tell the Chronic fatigue lot that that's "problematic".....

At the moment even doctors tend to say “a glass or two won’t hurt” when the fact is that even a single glass can cause serious harm to the baby if drunk at the wrong stage of early pregnancy.

Yes, it is a fact that Chief Medical Officer advice is now that no alcohol is the only safe amount in pregnancy.

Ok, but those are two WILDLY differing statements.

I can’t see anything in the CMO’s advice that says it is a fact - ie an indisputable truth - that one glass of wine can cause serious harm if drunk at ‘the wrong stage’ in early pregnancy. (What is ‘the wrong stage’, anyway?)

@xtinak

Yes, that’s what it seems like to me too. Presumably we can’t assume causation. The CMO’s advice says that Whilst FASD is less severe than FAS, it can result in physical, mental and behavioural problems including learning disabilities which can have lifelong effects. So perhaps some children with learning difficulties and behavioural problems and mental health issues have those issues because their mothers drank in pregnancy. But also, perhaps they don’t. We just don’t know.

I suspect this initiative is partly motivated by the desire to collect data on the effects of drinking during pregnancy.

So I see a few points here

First I don't see how it's a breach of data to record medically relevant information if it's accessed only by health care providers? I don't see how that's different to recording say, BMI during pregnancy of the presence of diseases which may effect pregnancy like diabetes or STDs. Or how it would be theoretically different to those breath test things that signal if a woman is a smoker.

On the other hand, given it would be self reported I don't see how it would be any real use.

I don't see how it is piling on guilt though, genuinely. Things can only make you feel guilty if your yourself feel it is something worth feeling guilty about. Weight, smoker status, these also have the potential to make pregnant women feel guilty but they are still recorded nonetheless.

I still don't see how it would be useful in the diagnosis of FAS because of the high unliklihood of women who drink regularly or significantly while pregnant reporting this accurately.

I wonder if a culture of treating pregnant women like other patients, as rational adults who can absorb information and make decisions rather than errant children who need decisions made for them would do more to encourage honesty.

@NoIDontWatchLoveIsland

I always find interesting how alarming people find this stuff, with language like invasive, intrusive, infantilising women. Maybe I am unusually chilled but it just doesn't bother me in the least. I'm middle class & was in my thirties when having my kids, I was asked about my relationship with my husband etc (those questions designed to flag up cases of abuse etc),about how much alcohol I had, asked to puff into the co2 tube. I wasnt bothered by any of that and am not really fussed about who sees my medical record.

Do you think that maybe that's because you're middle class and so used to HCPs treating you fairly respectfully, have no fear of things like social services involvement, etc? I am too, and so I also don't have the strong fear of such things that some people do, but I'm aware enough to know that that's a function of privilege - it's a privilege to 'not care' what authority figures have on record about you because you're not part of a group with experience of that being used in harmful ways.

@5amonSunday

I have no sympathy for the young ladies mother

She had her reasons for drinking. Addictions don't just go away during pregnancy, and for some people abstinence from alcohol feels impossible. Asking probing questions won't help.

The only thing that might improve outcomes for child and mother is engagement with health services, and the threat of recording alcohol use on child notes will not help this.

Exactly. Too often what happens here is people base their response on whether they have any sympathy for the mother or whether they can imagine drinking to excess in pregnancy, rather than giving any thought to whether a particular policy will do anything remotely positive for the foetus. We already know what happens when barriers are put in the way of people accessing medical care.

For anyone actually giving a fuck about babies born with conditions related to maternal alcohol consumption, the absolute best thing you could do is campaign for proper mental health provision. So that anyone who does have an alcohol addiction is able to get the best help possible when they're ready to access it. Unfortunately we do not currently have this.

For anyone actually giving a fuck about babies born with conditions related to maternal alcohol consumption, the absolute best thing you could do is campaign for proper mental health provision. So that anyone who does have an alcohol addiction is able to get the best help possible when they're ready to access it. Unfortunately we do not currently have this.

But this does fuck all for the actual babies born with FAS and those are born every day. And how do you even identify which pregnant women ARE alcohol dependent if you can’t even ask a woman how much she drinks? If you can’t identify them, then what use is a MH service when no one get referred to it?
I agree some women who abuse alcohol will lie, but not all will. This assumption that self reporting by women will always be a lie is a misogynist belief, it thinks so little of pregnant women. Even if a huge 1 in 10 lie, surely it will be good prevent 9 in 10 babies born with FAS?

Who said you shouldn't ask women if they drink? I don't think anyone has. The question is whether or not the answer to that question should go on their child's medical record, not if the question should be asked.