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

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

It's not clearly marked but it's the full details of his neonatal check so I assume that's in his record not mine? There's a section marked 'mother' which includes that and also how he was delivered, gestation (which is actually incorrectly recorded) etc. It's a completely separate document from the notes on my discharge to the community midwife, which is presumably in my medical record because all it says about DS is that it was a live birth.

Gronky no because those tests are a diagnostic tool to find out if/ what is wrong with the patient, the child.

I think it raises an interesting further exploration of where the core issue lies.

I wanted to add that this also seems to examine the issue of mothers not wanting to accurately divulge personal information (I hesitate to use words that suggest dishonesty, it feels very wrong in this context). Does it neatly bypass the issue or does it represent a vicarious invasion of privacy (the child helping medical professionals 'snooping' on their parents, albeit to identify potential health issues for the child)?

And what of the fathers?

They also pass on DNA which might include a higher risk of certain conditions.

I have read that age and lifestyle of the father can affect sperm quality. Some studies have shown higher rates of certain conditions in children of older fathers.

In terms of lifestyle, if there is alcohol, drug use, DV, these all can increase risk to woman when she is pregnant and therefore child in utero, and also afterward after it's born.

Are the other children he has had and any known miscarriages noted?

If the mother and father had been recommended that the mother take thalidomide, then that's not just on the mother is it.

And I think that's a poor example anyway. Acting on medical advice that results in damage is not a sensitive thing, and it's unlikely to be witheld. The damage from thalidomide was quite clear afaik as well.

Thank you, NiceGerbil. If these tests become readily available, I would really like to see a survey with similar questions to explore where individual objections lie.

Of course mothers and fathers may not 'accurately divulge' information to their children.

I have no issues with HCPs taking histories and setting them in the patient records. That is bread and butter stuff.

But parents medical histories on the child's records? Just no.

I wish I could find some info on this on Google but I can't. It's all about patients accessing their own records. Nothing about what if the mothers info is noted in the child's records. I'm thinking of their shared record that is with the GP here.

@NiceGerbil most of what you described would be recorded as social history rather than medical. It would be documented in assessments and referrals relating to concerns about the child’s health or well being.

Sadly the evidence just isn’t strong enough to be integrated into assessments etc like maternal issues are.

@NiceGerbil I suspect the reason you can’t find clear guidance is because perinatal information is considered to be the child’s history not the parents.

A test on the child is a test on the patient. It goes on their notes. That's clear cut.

This is about recording some of the most sensitive personal info a woman has and writing it down in her kids notes. The ones that the GP has that you can pay a few quid to view. I have done it.

I still struggle to believe this happens.

Florence Google doesn't filter information like that

'@NiceGerbil I suspect the reason you can’t find clear guidance is because perinatal information is considered to be the child’s history not the parents.'

Well that's just drivel.

Of course my perinatal depression is on my records! What a strange comment that is.

Presumably according to this thread my kids can read all about it when they're 16 if they have a spare tenner or however much it is.

@NiceGerbil it happens because most of the information is relevant to the child. It’s their history. Yes it’s the parents information and life experiences but it becomes the child’s history.

If a patient has mental health issues or some health conditions then an accurate and detailed history can really help. It’s not about breaching confidentiality because it’s the patients background. As I’ve said previously early years experiences impact our lives in so many ways

@NiceGerbil sorry how is it drivel? Perinatal information is recorded in child’s record because it’s their history too.

'@NiceGerbil I suspect the reason you can’t find clear guidance is because perinatal information is considered to be the child’s history not the parents.'

This is drivel.

How is perinatal depression not a part of the mothers medical history?!!
For that matter any tests or treatment take place while the woman is pregnant.
Why on earth wouldn't they go on her history?

Ah you've changed what you said.

You said it was their history NOT the parents history.

Have a reread of your post.

@NiceGerbil no I haven’t changed what I said. Perhaps you misunderstood what I meant. I doubt that guidelines regarding parental history in child records exist because it’s viewed as the child’s information. Of course the information would be recorded in the parents file too.

Basically the same information is recorded twice. Apologies if that wasn’t clear

Perinatal not parental and yes you did say it was not relevant for the mother.

Ok then.

So to be clear.

In the NHS, on the notes of all children born since a certain date, and considering that all records are supposed to be accessible across the whole NHS now, so hosp records available to GP etc.

Any and all info provided by the woman around her pregnancy is recorded on the child's records.

So
History of pregnancies with dates
Contraceptive choices
History of alcohol/ drugs and current consumption
Any DV or issues with the partner
Employment status
Any mental health issues by the mother including treatments and history of eg self harm or suicide attempts
Any other medication she's on
Any history of referral to SS etc
Then onto
Detail of the birth

Is that correct?

I get that the idea is to protect a baby from a possible terrible thing, but as usual, the impact on women is ignored.

How even would this work? During an exam they would test the mother and note down if they found alcohol? Or they asked mothers to self report? Crazy.

@NiceGerbil I absolutely did not say it wasn’t relevant to the mother. In relation to guidance about maternal information in child’s notes I said it would be considered the child’s history so guidelines probably don’t exist. That is true.

With regard to the list you’ve made it depends on context ime. If a pregnancy and birth is pretty non eventful and child then thrives and meets milestones etc then most of that list probably wouldn’t end up in the child’s notes.

But if there were pre natal concerns, SW involvement or subsequent failure to thrive/physical or mental health issues then assessments would be carried out and the information recorded.

I appreciate there are probably variations depending on where you live as to what’s recorded and how it’s accessed (I’ve never heard of people paying to read their notes!). But in general the information you share at your “booking” appointment and your discharge letter from maternity unit (or birth letter if you deliver elsewhere) are in the child’s notes.

And of course the biggest point to make here is that it’s the parents who provide the information, I’ve no real idea how this information is validated if at all by the midwives etc in the first instance. If there was cause for concern then HV, schools, nurseries etc may get involved to build a picture of what’s going on but a lot of the information comes from the parents

And of course the biggest point to make here is that it’s the parents who provide the information,

Why is this the biggest point? How does that make it any less a violation of the parent's right to privacy?

@BoomBoomsCousin I meant to highlight that as the parents are providing the information they should be informed as to what it will be used for and how it will be stored. And also because it comes from them, they know what they’ve shared although I appreciate parents have no control over what other agencies or professionals may say/record about them.

But you said this, it was very clear which is why I reacted as I did

'@NiceGerbil I suspect the reason you can’t find clear guidance is because perinatal information is considered to be the child’s history not the parents.''

Anyway, you've corrected that so let's move on.

'In relation to guidance about maternal information in child’s notes I said it would be considered the child’s history so guidelines probably don’t exist'

No one even thought about the possible consequences of including all this highly personal info about the mother in the child's records?

Bloody typical.

There are huge possible consequences of children finding out this stuff, especially around the previous pregnancies piece.

I cannot understand at all why that would form part of the child's medical record.

I don't think any parents are aware that this stuff goes on the child's notes and they can access it all at 16.

No one told me that when I had my kids.

So this is where we are at. Women's experiences of DV, abuse, details of their pregnancy history, drug and alcohol abuse, mental health issues like self harm or suicide attempts are recorded on their children's records and no one thought of the consequences and no one thought maybe we should point this out before we ask.

Fucking hell.

Gronky any tests done on the child are part of the child's medical records. No mother can withhold that permanently. (She may not tell her child while it is small, but once the child is old enough to access their own records they could find that out.)

I do not agree with any of the pre-pregnancy arguments or the arguments about the rights of the fetus outweighing the rights of the mother. Once the child is born, and has actual issues, whatever is then uncovered about perinatal issues in the search for answers, detailed assessment or treatment considerations is rightfully part of the child's medical records.

However, the notes about previous pregnancies, abortions, miscarriages, births or stillbirths are only of actual use to the obstetrician caring for the mother. Hence they should not be a normal part of the child's medical records. There should be a separate mechanism by which one may apply to see this information, with the mother able to refuse as this is her confidential data and her medical history, not the child's. No consent, no disclosure. There may be exceptional circumstances, such as twin births etc, but the decision should be made by a legal department not by some data recording company.