Mothers alcohol use shown on medical records

Florence Google doesn't filter information like that

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.

@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.

@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.

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.

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.

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.

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)?

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

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.

I’m not familiar with this type of test but if they are testing the infants blood or tissue then the result would automatically go in their record and parents couldn’t stop that

There were a few papers around 2010 looking at FAEEs and other markers in meconium, while the papers showed promising results, I can't find anything after this and certainly no commercial tests. It's not really my area of expertise (tropical disease control) but I think it raises an interesting further exploration of where the core issue lies.

I wasn't aware of whether parents have any say over that but it could be something that's objected to in the future. Thank you for that information.

How would you feel as an adult to find out your parent had withheld results/information? I’m not sure how’d I’d react I think it would depend on the circumstances

I think the feelings would depend very much on the information on a personal level and an individual's relationship with their parents more generally.

I'm talking about GP records though initially which are the ones most people know they have access to etc.

Hardbackwriter

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

in what way is this possibly relevant to any doc when DC goes in though their lives?

My red books are downstairs will check later. Kids were born after 2000 so will be in this cohort.

@Gronky I’m not familiar with this type of test but if they are testing the infants blood or tissue then the result would automatically go in their record and parents couldn’t stop that. Any lab sample labelled with a patients name and chi has the result logged in their record.

How would you feel as an adult to find out your parent had withheld results/information? I’m not sure how’d I’d react I think it would depend on the circumstances

CharlieParley (I'm also very interested in others' thoughts on this), while it's far from established in clinical use at the moment, there was some research done into biological markers in the newborn of foetal alcohol exposure. If these were better established, should mothers have the right to withhold the results of these tests from their children, given that they represent their choices while pregnant while, at the same time, the material being tested is very much that of the child?

I agree Hardback, I don't think a women's obstetric history is helpful to care of the child. Complications in that pregnancy however including alcohol, sunstance misuse or perscription drugs- yes. Should the thalidomide victims not know why they have their disabilities ?

@Hardbackwriter that’s horrible I’m so sorry to hear that. My trust use stickers with symbols on them on the front cover of notes to highlight information like that.

It’s frustrating when information is available but not utilised.

And if it was supposed to be there to help the HV it didn't help because she was really insensitive about my previous miscarriages...

There isn't any sign in the red book or any of the random stuff tucked into it of my mental health history, though, even though that was definitely in my antenatal notes. Perhaps it's in the electronic records, though; obviously I can't pull them out of a drawer at 9.30 at night to check!

@Hardbackwriter hiding in plain sight right? I’ve no idea how mine got there but can only assume it was the HV at some point. And obviously depending on the family setup those forms can be cans of worms. But they are useful to HCPs and that’s what they were created for

Looking at it, the birth notification and record of the newborn check that the hospital sent to the GP when DS was born (there's a copy tucked into his red book) does indeed say how many previous live births, abortions, stillbirths and miscarriages I had had prior to him. Presumably that's in his electronic medical records, too.

Is the support afforded to FASD unique to that illness? It seems they are saying the child will not be afforded support or a ECHP plan with the right care unless they 100% know.

Yes. DD2 will never see properly and will always have movement problems because her birth mother drank. Her specialist had never seen the brain damage she suffered not result in MS but fortunately she was very lucky.

Still no FASD diagnosis because it wasn't recorded that BM drank.

DD1 has far fewer issues but has a diagnostic because the info was recorded.

if a child has been exposed to significant levels of alcohol in utero then that is their information and it's very important for them to know.

Gerbil in my trust requests for acess to medical records all go through the legal department not sure about GPs.

Perhaps best to ask them ?

@crumpet for me it’s not about “putting things on the record” but about accepting support to reduce harm and risk. The documentation for me is a side effect or consequence of that. And in my experience people who want help want it regardless of the “consequence “ of being “labelled” because living as they are isn’t doable anymore. But I appreciate my experience isn’t everyone’s