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

[NiceGerbil]

So I'm not sure what your point is.

You agree with all the women who are shocked upset and angry.

NO-ONE who has 'explained' why the risk to the woman has never been considered.

No one has explained why it's not standard to advise women that anything and everything in their medical past, highly sensitive information, including information given during pregnancy, can appear on someone else's medical notes

No one has explained how this exemption to data protection law has been obtained

No women on this thread even knew this was possible until they read it here!

This is a genuine scandal.

And the HCPs are all, well that's just how it is

How can we trust the NHS at all with any personal info?

[NiceGerbil]

'. Of course children or other family members should not be privy to sensitive and irrelevant (to them) information'

Which is what the WHOLE thread is about!

[OhTheRoses]

I disagree. When dd was unwell she told a camhs nurse that sometimes she met her friends and drank vodka. The nurse extrapolated this into a report saying dd met her friends every week and got drunk on vodka regularly. This was absolutely not true. Although the report also had the incorrect date, the incorrect GP, the incorrect school, etc, and contained other incorrect information.

To get it rewritten dd and I had to complain formally through PALS to have another, correct report produced. The nurse apologised to the GP for the inconvenience. Not to dd and not to me. The inaccurate report cannot be removed from my daughter's record.

Just imagine some midwife of hv who may be no more competent than that camhs nurse going through dd's notes in 10 years time when she is pg had I not ensured that report was corrected.

The current situation re medical notes, inaccuracy and lack of confidentiality is absolutely terrifying not least when considered against the incompetence of some of those responsible for committing incorrect information onto a permanent record.

Surrey 2016. Totally unacceptable then
Totally unacceptable now.

[FlorenceNightshade]

@NiceGerbil what’s baffling is your lack of understanding or concern of child protection. Data protection is obviously an area you feel well informed in but your (and other posters) lack of knowledge of how child protection works is blatantly obvious to the HCPs who have tried to explain it on here.

Anyone with first hand, front line child protection experience will tell you that once you’ve been involved in it you would agree that there can never be too much information or intervention available to PROFESSIONALS. Of course children or other family members should not be privy to sensitive and irrelevant (to them) information but that doesn’t mean it shouldn’t be gathered where necessary for other relevant purposes.

[BoomBoomsCousin]

I find it mind boggling that the HCPs on here, bar one, are all so cavalier about data protection law and consent basics.

I am, sadly, unsurprised that consent is waved off as though irrelevant in this situation. My experience of the NHS around children’s health has been one of complete lack of concern about informed consent. If anything, consent was seen as a barrier to take up. From HVs to in school hearing tests and vaccinations the entire set up is geared towards compliance not consent. It’s a huge shame because the NHS provides a brilliant, comprehensive level of service in so many ways, but it totally fails to spend any time buildIn trust with most mothers or capacity for mothers to be more active in their children’s health care.

[NiceGerbil]

Your utter inability to understand or have any concern about

Data protection law
Consent to sharing of sensitive data
Risk to the mother caused by sharing information

Is baffling to me.

It is how it is and I can't do anything about it so whatever. Is such a cop out.

[Flittingaboutagain]

I'm not sure what you want us to say. Personally I will look to see what my professional body advise and then form an informed opinion about what my duty of care is. I have no influence on what HCPs working with children do.

[NiceGerbil]

No one has addressed the possible risk to women of having this information recorded on the child records.

The point about redaction is not the point. It's not about requests for full records from the hosp. It's about summary info about a woman's medical etc history being recorded as the starting point on the child's shared electronic records.

I find it mind boggling that the HCPs on here, bar one, are all so cavalier about data protection law and consent basics.

[roarfeckingroarr]

@BoomBoomsCousin @FlorenceNightshade precisely, it would show any alcohol consumption. It's an egregious assault on women's privacy.

[BoomBoomsCousin]

You think people who are concerned about medical privacy are most concerned about actions by authorities that are unwarranted?

That’s not the concern. The concern is that people who should know nothing about your lifestyle will be privy to it. They will make unconscious judgments about it (even while they stick to protocol for things that require direct evidence) And that will affect how they treat you. The information may not stay confidential (because protocols and people aren’t perfect). And you will no longer have any control over it. And, perhaps most importantly, your child may have access to that information when they are older.

[FlorenceNightshade]

@BoomBoomsCousin I’m aware of the content. What I’m saying is that in the real world that information would never be acted on if it wasn’t going to cause significant risk of harm. It’s data that would be collected but not used unless it became relevant

[BoomBoomsCousin]

[quote FlorenceNightshade]@BoomBoomsCousin even if a single glass of alcohol was consumed and recorded in mother’s notes it would never be actioned by a HCP as it’s not going to cause FAS.[/quote]
Read the fucking article FlorenceNightshade.

They are talking about recording the single glass of alcohol that the MOTHER drinks on the CHILD's medical records.

[FlorenceNightshade]

@BoomBoomsCousin even if a single glass of alcohol was consumed and recorded in mother’s notes it would never be actioned by a HCP as it’s not going to cause FAS.

[BoomBoomsCousin]

[quote FlorenceNightshade]@roarfeckingroarr that’s not drinking to excess or putting your child at risk. The difference is trying to identify babies at risk of FAS and reducing those risks where possible.

And it’s not treating women as “incubators” as pp have suggested. If a woman is continuing a pregnancy then HCPs are obliged to try to support her to do so in a way that minimises risk to her and the baby.[/quote]
From the article that started this thread, linked in a nice clicky link in the OP:

"The record would show if a mother even had a single glass of alcohol"

[pollylocketpickedapocket]

@roarfeckingroarr

It's deeply fucking sinister. I'm 37 weeks. I've had the odd glass of wine or half of lager over the past 9 months. Like fuck would I tell a doctor or midwife this if it was being recorded. Leave us the hell alone.

This is to identify women who are using alcohol/drugs to a point it would endanger their child.
The vast majority of pregnant woman are of sound mind and want their children to be healthy, the rights of children should definitely come first, if a women is so abused that she is dependent on substances then she shouldn't be having children at all as much for her sake and the poor kids too

[FlorenceNightshade]

@roarfeckingroarr that’s not drinking to excess or putting your child at risk. The difference is trying to identify babies at risk of FAS and reducing those risks where possible.

And it’s not treating women as “incubators” as pp have suggested. If a woman is continuing a pregnancy then HCPs are obliged to try to support her to do so in a way that minimises risk to her and the baby.

[FlorenceNightshade]

@AntiSocialInjusticePacifist in an earlier post I explained how the fathers information is recorded (in my area and ime) but basically fathers circumstances tend to be recorded as social history (if at all) unless there are significant health issues disclosed such as BBVs or hereditary conditions. Ime this is due to a lack of evidence that fathers health is as relevant to a baby as mothers is.

[roarfeckingroarr]

It's deeply fucking sinister. I'm 37 weeks. I've had the odd glass of wine or half of lager over the past 9 months. Like fuck would I tell a doctor or midwife this if it was being recorded. Leave us the hell alone.

[Gurufloof]

will only be recorded if there are relevant concerns. And any information that is recorded would likely be redacted if notes were accessed by the person/parent as they identify another person. In practice this might not happen I have no experience of that so don’t know

Who decides what's relevant? What are the criteria?
I'm not certain about this because lots of my notes are missing, but I can access what there is online, any time I want. How can it be redacted if I can access whenever, it's even more likely that people born after 2000? Can access notes whenever. Cant redact live notes.

[AntiSocialInjusticePacifist]

If this is a case where mother's medical records confidentiality is compromised but father's are not, I can see where the possible outrage is coming from. However in the name of health outcomes for children being improved the solution is to ensure relevant data from father's medical records being included.

[FlorenceNightshade]

@Al1Langdownthecleghole I have not been misleading. In my profession I regularly read reports that contain family history information in most of the categories mentioned on here.

Maternal health and family circumstances make up a child’s history. That is a fact. This information may be recorded in a child’s notes where relevant. Also a fact. Alcohol, drug use, number of siblings and pregnancies are all information that can be recorded if relevant and cause for concern. Fact.

If there is a specific “claim” I’ve made that is incorrect I’d love you to highlight it. This thread was to share information which I have done honestly and with professional experience.

[Al1Langdownthecleghole]

Hatgirl has helpfully posted a full explanation on the thread I started in legal.

As I suspected, some of the posters on this thread have been misleading us.

To use the phrase of the week, information is only shared on a limited and specific basis. And only relevant information from maternal records is included in child records.

It would appear that the lady of the lamp had had her candle blown up.

[Flittingaboutagain]

I'm sure a lot of non relevant information would get redacted...
As I said earlier a perinatal MH nurse would know the facts here more than me though. When I have been asked to prepare documents I have followed guidance in what to redact.

[FlorenceNightshade]

I think one of the points that perhaps isn’t being made clear here is that maternal information such as drug/alcohol use, DV concerns, police or SS involvement will only be recorded if there are relevant concerns. And any information that is recorded would likely be redacted if notes were accessed by the person/parent as they identify another person. In practice this might not happen I have no experience of that so don’t know.

[Gurufloof]

Alcohol is the drug that kills the most people in the UK, hopitalises the most people in the UK, and is responsible for more ill than all of the rest of the drugs available combined. Only cigarettes are any kind of rival. I chose not to ingest alcohol throughout my pregnancy, because it is common knowledge that even ONE glass has the potential to harm unborn children. Doctor's and other care givers may need this information to protect both the mother and child

This isnt only about alcohol, in fact it's not about alcohol except tangentially. It's all the other things that one person decides is important enough to also go on the child's records. From self harm, drugs, alcohol, depression and how many live/dead children the mother had. So if I had a child adopted for any reason and never told my child/ren living with me, at age 16 they could find this out. Surely this is up to the mother to tell or not tell.
And then the audacity to not do the same for the fathers.
Its infuriating. More so because it's down to a random HCP. If they think it's not worth reporting,then it's not reported. This is a ridiculous state.
Even getting permission to me is a minefield. I would have agreed when younger, now I know more (and am too old to have any more children) i would never agree.