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

[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.

@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.

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.

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.

[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.

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.

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?

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.

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.

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.

No I had no idea either.

And Google gives nothing. Nothing at all.

Considering the highly sensitive nature of the data I'm shocked it's available to children and that this is not mentioned as far as I can see on the NHS site, I've found no discussion, news, anything, anything at all on Google.

I definitely was not advised this for either of my children at any point.

I work in an industry that handles sensitive data and the rules around it are VERY strict.

And this is just about as sensitive as it gets.

The point that there could be massive real life consequences for families and definitely risk of harm including physical to the mother as a result of this has apparently never occurred to anyone who knows this happens.

My question about what info of the fathers is recorded on the child's notes has not been answered which is telling.

The other point is that if this already happening then the original article makes no sense. As info on disclosed alcohol use by the mother is already on the child's notes.

Who would I write to, to confirm the policy on this in the NHS as a whole?

Although s PP has said there is no policy as it's just normal practice.

But there MUST be one as it's considered sensitive data.

Women need to know this.

Those from certain groups could be exposed to serious risk as a result of this.

Apparently that's just

I really really would like to see s policy or NHS info piece about this. I still find it unbelievable (although multiple posters who work in this area confirm it's happening).

Totally agree with recent posters. I'm an HCP and was a V senior NHS manager prior to 2012. Admittedly my specialities never covered maternity or paeds but I'm still shocked by this if true.

I actually don''t think electronic integration could have happened as far back as 2000, other than as a specific pilot, as electronic records weren't widely used. That isn't the case now though.

I'd write to Matt Hancock if I didn't think his comlete blindness to the downsides of digital technology would make that a waste of time.

Perhaps Kier Starmer / John Ashworth?

This is genuinely awful - and women need to know about it

@NiceGerbil I’ve already tried to explain what information about fathers is held but I’m happy to try again.

Any medical issues disclosed to midwives etc specifically relating to the father would be recorded such as hereditary conditions in his family and any significant health conditions he has that are disclosed including BBVs, MH etc.

Things like drug/alcohol use, info the police hold such as DV concerns etc would be recorded as social history. Social history information is usually gathered in detail when there are concerns raised.

In a pregnancy with no concerns and where a baby then thrives etc there is likely to be very little if any of this type of information recorded. That goes for the mother’s information too.

I agree there needs to be clarification on this.

It might be easier to start with asking individual NHS trusts if they have a policy and what it is.

I'm confused about how they would know if you had a glass of wine before you even knew you were pregnant? Does this not rely on the mother's telling the truth at their appointments?

Although, I know of a mum who smoked a few joints of weed before she knew she was pregnant, and admitted it at the appointment, they tested her and she came back positive, and they drug tested her each time she went after that. Seems a bit u fair that she would have that recorded and be tested, but other mums can drink and it doesn't?

Just not sure how it would work

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

I've been told my mum took drugs during pregnancy and there were MH issues. We are NC since I was 17 and didn't live with her, just visited. I wish this info about my mum was recorded on my records!!

[quote FlorenceNightshade]@NiceGerbil I’ve already tried to explain what information about fathers is held but I’m happy to try again.

Any medical issues disclosed to midwives etc specifically relating to the father would be recorded such as hereditary conditions in his family and any significant health conditions he has that are disclosed including BBVs, MH etc.

Things like drug/alcohol use, info the police hold such as DV concerns etc would be recorded as social history. Social history information is usually gathered in detail when there are concerns raised.

In a pregnancy with no concerns and where a baby then thrives etc there is likely to be very little if any of this type of information recorded. That goes for the mother’s information too.[/quote]
'Likely to be' isn't really good enough. And what relevance are a mother's previous pregnancies to her children? Why are they part of a child's medical records?

@Clymene from a risk assessment point of view the number of pregnancies/number of siblings question may be relevant. Likewise any complications may be relevant to new baby. That’s why it’s included.

@OvaHere

I agree there needs to be clarification on this.

It might be easier to start with asking individual NHS trusts if they have a policy and what it is.

Policies - and laws - can change.

We still don't have electronic antenatal records in my trust. Which in some ways I think is bonkers - if you forget to bring your notes they just have no information on you - but I guess that means most of it isn't in DS's notes unless someone has diligently copied it over? The original book is definitely in my file, not his, because I remember the nurse commenting on the extraordinary size of it (I had loads of extra scans and monitoring, all of which got paper-clipped in) when she was looking at my hospital file when I had a pre-operation assessment for something entirely unrelated to maternity.

@Hardbackwriter yes your physical antenatal notes would go in your hospital file but the first entry in a child’s record (usually the electronic gp one) is nearly always the birth summary. In a pregnancy with no concerns that’s usually all that’s there but if there were additional risks etc then these can be added to child’s record.

In my country a lot of the information that’s on the online system accessed in hospital that relates to parents is things like referral letters to other services and then the initial assessments.

Woman who don’t engage or who aren’t honest flag up anyway

That wouldn't make it into the child's medical history though, would it? 'Suspect mother might have consumed alcohol this pregnancy as she looks a bit shifty and my Spidey sense is tingling.'