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

Wonder how many children will access the records and end up hating their mum for what they see on there

Wonder how many children will access the records as an adult and end up hating their mum for what's on there...

It's an interesting question @SafeInBed. I haven't ever seen my medical history. Not sure I want to, given that apparently they might have recorded that I looked a bit shifty or 'didn't engage'- whatever that means. What else do they record? Hair a bit unkempt, socks didn't match...

As someone who is involved in cognitive testing for adults presenting with neurological damage it would be really helpful to know how much the mother was drinking during pregnancy and BF. Often the patient themselves has no idea and may not even be aware that there were alcohol issues if they were raised in care (especially 20+ years ago when we may not have paper records still) or relatives who could give a history have died.

@Flittingaboutagain

As someone who is involved in cognitive testing for adults presenting with neurological damage it would be really helpful to know how much the mother was drinking during pregnancy and BF. Often the patient themselves has no idea and may not even be aware that there were alcohol issues if they were raised in care (especially 20+ years ago when we may not have paper records still) or relatives who could give a history have died.

How would it be helpful? I don't mean that in a snarky way but surely any support you give is based on need, not diagnosis?

According to posters on here it's already available on the child's records flitting, along potentially with drug use, details of previous pregnancies, previous mental health problems, DV and so on

So not sure why this article has even been written.

And also 'oh it's useful' is not how data protection works.

Data protection prevents lots of things happening that would be useful, but it's not an argument for ignoring the principles. In fact it's illegal to do so resulting in fines. How the NHS has decided (or not even considered) the legal and real life consequences of including data classed as sensitive in the records of another person, without explicit permission, is beyond me.

Or will be once you start getting patients born post 2000 I think it was. When it went all shared and electronic. That's what I've got from the thread anyway.

Of course anything that happens after the birth is a different ball game because then that is part of the babies situation. Of course it is tangled because the baby can't speak for themselves.

When it comes to shunting highly sensitive historical or current info about the mother eg previous pregnancy details, MH issues which could include info about self harm etc that is disclosed during the pregnancy. And without any consent for sharing gained. It is extremely problematic and goes against everything I have learnt about data protection.

Clymene

As an example, if I am trying to decide if someone has dementia, an undiagnosed learning disability, or alcohol related-brain injury. The diagnosis is important because support services are geared up (and funded) on the basis of the diagnosis. So if I can determine that the person has cognitive difficulties such as poor concentration and short term memory loss due to alcohol-related problems they would receive different (theoretically more appropriate) support than someone who had dementia. Does that make sense?

So knowing risk factors can really help aid diagnosis.

I work with people 45 years+ and we don't usually have child records for them.

Alcohol in pregnancy related rather than their own use, can excessive alcohol use by a person impact their brain function, or do those people not go to you? Ditto for excessive drug use.

Also isn't it an assumption? Rather than a diagnosis? If you suspected brain damage due to mothers consumption in pregnancy and the notes on the child's records about the mothers habits and history etc say no alcohol, would you think oh it's not that then?

You will do or people in the future will.

And I'm sure people over 45 have NHS records! In fact really sure because I'm over 45 and I have seen mine at the GP!

The part about putting loads of information about someone else in (their mother) will come through from children born after 2000.

www.bps.org.uk/sites/bps.org.uk/files/Member%20Networks/Faculties/Intellectual%20Disabilities/Guidance%20on%20Neuropsychological%20Testing%20with%20Individuals%20who%20have%20Intellectual%20Disabilities.pdf

In case this is of interest, these are some of the aspects of an adult's history I would be required to ask about.

Oh sorry yes child records.

No they are lost in the mists of time!

In fact all my notes and x-rays from years of surgical procedures as a child have been lost when the hospital moved but that's another story

Well in future they will. Do you think that breaking such a fundamental of the handling of sensitive personal data of all sorts of stuff, without consent, is appropriate then? Because it might help, with something that might come up, decades later?

Which section on there flitting I scanned but it's a long doc.

Getting a medical history is not a problem why would it be.

This is about taking a woman's medical and lifestyle etc history during pregnancy and copying some/ lots of her history into her childs record which will then be available to GP and all other NHS providers as per the new electronic set up, and available to be read by the child from age 16 if they ask.

It's an interesting question@SafeInBed. I haven't ever seen my medical history. Not sure I want to, given that apparently they might have recorded that I looked a bit shifty or 'didn't engage'- whatever that means. What else do they record? Hair a bit unkempt, socks didn't match

I've seen my records, theres a huge lump missing for various reasons. A lot from childhood around birth to 5 years, and then other stuff from when we lived abroad. As it's all now online, or at least on a computer, there should be nothing missing since records went online. So for the children born after 2000, it should all be there, including apparently some parts of the mothers history.

As for the unkempt hair and stuff, I've heard various HCPs talking about service users in a derogatory manner, stating things like, she could look prettier with some makeup on, unshaven legs, how slatternly is she. And other things.

My dad was a gp retired now and even back then they were aware not to write personal opinion which certainly happened before. There's loads of code.

Eg

Well informed means they have been googling and think they know it all and are a pita

Thread the other day, saying why do they put 'i meant this pleasant patient' = she's fine

Sure there is more but it goes on. Also stuff like being unkempt would be couched in professional sounding terms if they felt it was relevant for the notes eg looking after yourself is considered a thing when it comes to mental health I think.

This is all an aside because the point of this thread is it's not your records.

It would be your child reading that you were scruffy on X date. Although I think it's more summaries they transfer into the child's notes, I don't actually know though. The notes that are part of their record available across NHS and GP etc.

As someone who is involved in cognitive testing for adults presenting with neurological damage it would be really helpful to know how much the mother was drinking during pregnancy and BF. Often the patient themselves has no idea and may not even be aware that there were alcohol issues if they were raised in care (especially 20+ years ago when we may not have paper records still) or relatives who could give a history have died

But where does the information gathering stop?
How much and what info is passed on, is down to presumably an individual at that moment. Unless its everything and that would be worse than parsed info.
So an individual decides that the couple of pints a woman had right at the start before she even knew she was pregnant is useless info, and doesn't add it, another individual decides that any drinking even the half glass of champagne at a wedding is critical, your left no further forward.
And it still is all kinds of wrong.

As for the all relatives dead scenarios, it happens, I'm one of them. And each time I say I dont know, HCPs take it just fine. But there aren't that many cases where absolutely no one is around to ask, so adding birth mother private info is still not justified.
Also often people who drink will hide it from family, like gamblers will (curious is that also recorded)

I asked what info about the dad was recorded on the child's record. I think this is a huge point. Are how many children he has fathered and whether they were aborted added? The answer will be no on the basis it's not relevant for the pregnancy or the birth. I can see no reason why the info the mother gives on this is deemed relevant for the child. And it really bothers me that no one has considered the risks and consequences of children getting this info on their mother. I mean that just sums everything up really.

Yes I totally appreciate the privacy concerns of the mother. It has to be significant and/or repeated consumption over a long time to be considered in my assessment.

But it's not you who will have recorded the info on the child's record. Info about the mother gathered while she was pregnant and before the child existed.

If a woman has her meeting with midwife and they say what about drugs and the woman says no I used to do a lot but gave up 10 years ago it's up to that midwife to decide whether to add it to her summary report about the woman which could in turn form part of the child's notes when they are born.

None of the women on here were advised that any info they shared could be read by their child years later.

There seems to be no policy, no guidelines, no informed consent, no understanding of data protection law and no consideration of ramifications.

All the HCPs area just like oh well it's handy or would be handy so there you go.

This is extremely concerning to me and many of the other women who have posted.

It's not hard to imagine a woman being abused or killed over info that apparently is in there. No one has responded to that point.

Nice Gerbil, I'm an HCP and while I can see the information is useful, I am absolutely against merging medical records without full, informed consent of mothers.

And I'm pretty sure I won't be alone.

As for the unkempt hair and stuff, I've heard various HCPs talking about service users in a derogatory manner, stating things like, she could look prettier with some makeup on, unshaven legs, how slatternly is she. And other things.

Well that's human nature to an extent. But are they writing, 'slatternly unshaven legs' on my medical notes and passing those on to my kid?

No they won't be writing that.
But could use language that communicated that.
On the basis that a lack of personal care can be a sign of mental health problems.

And having unshaven legs is not in the same league as having previous pregnancies recorded or mental health history.