Mothers alcohol use shown on medical records

[RegularHumanBartender]

I have just stumbled across this on the Sky news homepage and I am horrified. I have no words! Apologies if there is already a thread, I did scan the first page but I couldn't see one.

Talk about reducing women to sacred incubators! I am struggling to form sentences I am so incensed by this. Not sure if this is even the right place to post.

news.sky.com/story/mothers-alcohol-use-could-soon-be-shown-on-childs-medical-record-prompting-privacy-fears-12073153

www.wellbeingsoftware.com/solutions/product/euroking-connect/

Common sense and instinct??

Or, in other words, profiling women that you think are 'the sort' to binge drink in pregnancy.

@pollylocketpickedapocket thank you for understanding! It’s hard to explain “instinct” and it’s value. Never to be confused with judgement though.

@NiceGerbil actually 16. You’re an adult at 16 and can access your notes then in my country.

Red books are held by parents but the information in them is also held electronically/on paper too. As far as I’m aware it’s pretty standard at antenatal “booking” appointments to record number of pregnancies and number of siblings. I don’t know wether that information is “cross checked” with gp/hospital notes though.

Pre natal issues are generally only considered relevant if there are issues like complex health conditions, mental health issues etc later on. Every assessment I’ve ever read of a patient who’s accessed support for MH or complex needs includes a rundown on pre natal circumstances, labour and delivery. And these assessments form part of the patients record and can include descriptions of phone calls between professionals they aren’t always written by the exact people.

@Hardbackwriter please don’t confuse instinct with judgement. Some HCPs are judgemental but some have developed an insight and instinct into their patients circumstances. Sometimes all you have is a gut feeling and it turns out true. I can hand on heart swear I’ve never been wrong about that feeling in my career

Well the penny took a long time to drop with me - I popped into the doctors wondering if I might be pregnant, for them to put me at 15 weeks plus. I’d been cracking on as normal until then - not a heavy drinker, but happy to have a glass or two of wine On the odd occasion, or to have a jolly good night out from time to time. dd at nearly 18 seems to be none the worse. The question was t asked of me but if I’d been a regular, heavy drinker why on earth would I have put this on record?

@BoomBoomsCousin

FireUnderTheHand "Totally agreed (would adopted part would come in though since it isn't 'medical'?)."

I was thinking that if the mother's pregnancies were recorded on the child's medical records and she gave up a child for adoption/had an abortion/miscarried/still birth then that could be seen from the child's medical records and the discrepency in no. of siblings. Equally if child had a sibling but their medical records showed that the mother had not been pregnant before, information about the other child's parentage is made available to hcp's treating the first child.

Ah! I misunderstood the adoption part, reading comp fail! You meant if she gave it up for adoption, now I see.

Thanks so much for clarifying, it has been quite the day today. Have been on mediation call all day so messing about on here is keeping me from getting bent out of shape - perhaps not the best outlet for today considering I only frequent FWR!

I was a woman who had drunk heavily before I discovered my surprise pregnancy, I was terrified I had harmed my child but having that on her medical records would have done her no benefit and possibly harmed us both due to the stigma.

This will just deter the women in most need of help and support from seeking this. Women’s right to autonomy and confidentiality must be respected.

Are these records all available via the GP?

Of course HCPs need full history etc when treating someone. That's all fine. And it's the patient's history.

Of course something that happened at birth would be on the child's notes eg disability as a result of something going wrong with the delivery.

What I don't understand still is whether if for a child born after 2000, from age 16, they can go into their GP and look at their notes, and the first part will be information about the mother. Which may be relevant to the mother, but is not relevant to the child. EG how many pregnancies and when. Why interventions with SS etc. Anything else? Is it the whole of the mothers maternity notes? In which case things like smoking, alcohol, drugs, mental health, DV, other risk factors could well be in there.

I would really appreciate some clarity/ pointers around this as I'm gobsmacked.

[quote hopefulhalf]www.wellbeingsoftware.com/solutions/product/euroking-connect/[/quote]
Thanks for the link.

This is their website tagline

By creating an integrated view of all records related to a mother and baby, Euroking Connect helps digitise information, enhance clinical workflows and improve care received during pregnancy and after birth.

I can see why that would be clinically useful. I suppose the question is whether they've thought about future request for records from the child (as an adult) and whether they can un-integrate those records so a woman's privacy is maintained?

@crumpet for me it’s not about “putting things on the record” but about accepting support to reduce harm and risk. The documentation for me is a side effect or consequence of that. And in my experience people who want help want it regardless of the “consequence “ of being “labelled” because living as they are isn’t doable anymore. But I appreciate my experience isn’t everyone’s

Perhaps best to ask them ?

Gerbil in my trust requests for acess to medical records all go through the legal department not sure about GPs.

Is the support afforded to FASD unique to that illness? It seems they are saying the child will not be afforded support or a ECHP plan with the right care unless they 100% know.

Yes. DD2 will never see properly and will always have movement problems because her birth mother drank. Her specialist had never seen the brain damage she suffered not result in MS but fortunately she was very lucky.

Still no FASD diagnosis because it wasn't recorded that BM drank.

DD1 has far fewer issues but has a diagnostic because the info was recorded.

if a child has been exposed to significant levels of alcohol in utero then that is their information and it's very important for them to know.

Looking at it, the birth notification and record of the newborn check that the hospital sent to the GP when DS was born (there's a copy tucked into his red book) does indeed say how many previous live births, abortions, stillbirths and miscarriages I had had prior to him. Presumably that's in his electronic medical records, too.

@Hardbackwriter hiding in plain sight right? I’ve no idea how mine got there but can only assume it was the HV at some point. And obviously depending on the family setup those forms can be cans of worms. But they are useful to HCPs and that’s what they were created for

There isn't any sign in the red book or any of the random stuff tucked into it of my mental health history, though, even though that was definitely in my antenatal notes. Perhaps it's in the electronic records, though; obviously I can't pull them out of a drawer at 9.30 at night to check!

And if it was supposed to be there to help the HV it didn't help because she was really insensitive about my previous miscarriages...

@Hardbackwriter that’s horrible I’m so sorry to hear that. My trust use stickers with symbols on them on the front cover of notes to highlight information like that.

It’s frustrating when information is available but not utilised.

I agree Hardback, I don't think a women's obstetric history is helpful to care of the child. Complications in that pregnancy however including alcohol, sunstance misuse or perscription drugs- yes. Should the thalidomide victims not know why they have their disabilities ?

CharlieParley (I'm also very interested in others' thoughts on this), while it's far from established in clinical use at the moment, there was some research done into biological markers in the newborn of foetal alcohol exposure. If these were better established, should mothers have the right to withhold the results of these tests from their children, given that they represent their choices while pregnant while, at the same time, the material being tested is very much that of the child?

@Gronky I’m not familiar with this type of test but if they are testing the infants blood or tissue then the result would automatically go in their record and parents couldn’t stop that. Any lab sample labelled with a patients name and chi has the result logged in their record.

How would you feel as an adult to find out your parent had withheld results/information? I’m not sure how’d I’d react I think it would depend on the circumstances

Hardbackwriter

In that copy of the notes where it shows your history, is the patient indicated as being you or DC?

in what way is this possibly relevant to any doc when DC goes in though their lives?

My red books are downstairs will check later. Kids were born after 2000 so will be in this cohort.

I'm talking about GP records though initially which are the ones most people know they have access to etc.

I’m not familiar with this type of test but if they are testing the infants blood or tissue then the result would automatically go in their record and parents couldn’t stop that

There were a few papers around 2010 looking at FAEEs and other markers in meconium, while the papers showed promising results, I can't find anything after this and certainly no commercial tests. It's not really my area of expertise (tropical disease control) but I think it raises an interesting further exploration of where the core issue lies.

I wasn't aware of whether parents have any say over that but it could be something that's objected to in the future. Thank you for that information.

How would you feel as an adult to find out your parent had withheld results/information? I’m not sure how’d I’d react I think it would depend on the circumstances

I think the feelings would depend very much on the information on a personal level and an individual's relationship with their parents more generally.