Mothers alcohol use shown on medical records

The point about being educated is simply that I research things thoroughly, I read all the information provided and I'm pretty well informed about things, particularly my own healthcare. Still had no clue.

I am a highly educated articulate woman and I had no idea that things I told my midwife at booking appointments would go onto my children's records. None.

GDPR is pretty clear btw that personal data must only be held for an actual reason, that readon must be justified, and the data held only for a limited time. You cannot hold data indefinitely that you no longer need to provide your service.

Until the rules are changed a few years down the line - much as pension ages were.

Did you think your notes would be confidential forever ? Sorry about that. Here's a sticker. Don't forget to clap"

And that's before you consider it being shipped off to the US as part of the NHS data sell off ...

www.dailymail.co.uk/news/article-7984439/UK-Government-sells-millions-NHS-patients-medical-data-drugs-giants.html

www.theguardian.com/technology/2020/feb/08/fears-over-sale-anonymous-nhs-patient-data

www.wired.co.uk/article/google-apple-amazon-nhs-health-data

This is why there are things I would not ever disclose to a doctor.

The old adage about two keeping a secret still applies. Personally I wouldn't trust my doctor with anything I wouldn't post on social media. But then I'm old and ugly and not worth bothering about. It's not so easy for others.

There are two very separate issues at the heart of this.

A) The pregnant woman is entitled to absolute confidentiality and needs to have complete confidence in that confidentiality so that she can disclose her relevant medical and social history. That history, used as part of a holistic assessment should inform discussions about her care and treatment and any additional support she may need. That need for confidentiality, is why women should be seen separately from their partners so that they can safely disclose previous pregnancies their DH/DP may be unaware of.

B) It is useful to have relevant medical details recorded as part of the child health record, and yes it would be convenient to automatically transfer those records. Yes too, the data could inform longitudinal studies. But - and it’s a very big BUT - convenience doesn’t override confidentiality.

There are a lot of scenarios where the medical history of a close family member can inform an assessment, yet there are rightly no proposals to share the records of an adult sibling who had an anaesthetic reaction.

In the state’s attempts to have comprehensive data about its citizens, their rights as individuals are overridden. Now obviously, this starts with pregnant women who are merely empty vessels who need to be controlled, but at the risk of sounding like a conspiracy nut, it won’t end there.

And the immediate danger, is that in order to protect themselves from the consequences of B, women will choose not to disclose important and relevant information and that will make it more difficult to provide care for them. Still, only women eh?

Just to add if you perform an HIV or Hepatitis test or a drug screen on a baby the results would definately go in to the baby's notes and that is also maternal information. Although I agree the previous pregnacy thing needs reviewing. Medically there is no clear line between the mother's and the baby's information.

[quote FlorenceNightshade]@BoomBoomsCousin as a HCP I think it’s shameful that so many of my colleagues don’t explain how and why data is collected. Yes of course patients can ask questions and challenge poor practices but very often patients are not in the right headspace to do this.[/quote]
I think patients are rarely in the right headspace to have things explained at the time, either, tbh. It's hard when you're looking at your 30+ week bump and feeling the kicks to appreciate that saying yes to having your notes intermingled with your baby's might mean that they will be able to access that information for themselves when they are an adult, to appreciate that you might have some discomfort about that after decades of them being outside your body.

To really think about what it means to put your own sexual health history on your child's medical records probably isn't something most NHS appointments have enough time for.

For those involved in this, I'm interested to know what type of info is recorded about the father? That will be available to the child at 16.

This is why there are things I would not ever disclose to a doctor. And if I was asked today, I would most likely ask to see their explanation as to what happens with this data.

GDPR is pretty clear btw that personal data must only be held for an actual reason, that readon must be justified, and the data held only for a limited time. You cannot hold data indefinitely that you no longer need to provide your service.

So, by all means, entangle the perinatal notes of the child with the pregnancy notes of the mother in the immediate peri- and postnatal period. But after the child is born, if no congenital problems arise, the records must be disentangled and confidential patient data pertaining only to the mother removed.

For cases where issues arise much later in life (say a mental health condition that may be inherited), it would be incredibly easy to allow limited disclosure to the health care professionals treating the child without disclosing anything else. These are electronic records after all.

@BoomBoomsCousin as a HCP I think it’s shameful that so many of my colleagues don’t explain how and why data is collected. Yes of course patients can ask questions and challenge poor practices but very often patients are not in the right headspace to do this.

[quote FlorenceNightshade]@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.[/quote]
If professionals routinely told parents what it would be used for and how it would be stored I'd have no problem with it because that would then be informed consent. But I'm sure there are mothers on this thread who have had children in England in the last 20 years and I'd be incredibly surprised if they'd been told their perinatal information about themselves would go on their child's health records, not their own, especially pre-birth.

I had my children abroad but returned to England when they were about 6 months and I have never had an HCP tell me what information would be used for or how it would be stored unless I asked.

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.

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.

'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.

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.

@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.

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?

@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

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.

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?

@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

Ah you've changed what you said.

You said it was their history NOT the parents history.

Have a reread of your post.

'@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?

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

@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 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.