Private medical information

[Stripedjamma]

I've just come back from my first midwife appointment where we completed two booklets of information about my health, my family history and my partner's.

She then gave me one of the packs and said I need to take it where ever I go especially to appointments.

I clearly wasn't paying attention as I thought all my answers were going on the booklet she was keeping.

I now have a booklet with my HIV status, details of extremely private medical conditions, details of relative's miscarriages and a page that is yet to be filled out (next appointment) with details of sti results.

I loose things all the time. (I even told my midwife who said to try not to loose it as it has everything they need to know on but they can replace if needs be) and things turn up in the most strangest of places.

My landlord often goes into our home and could easily choose to read the booklet, my in-laws are extremely nosey and it only takes me leaving something in a bag and dash out to the loo for them to just sneak a peak and have an opinion...

What is the point in having the privacy of keeping your medical record at your surgery if you then have to carry all the private details around with you each time you become pregnant?

I really don't want the booklet anymore it's getting me so stressed out trying to protect my privacy and it's not even a day later, can I just give it back?

Or at least return the pages that are so so so intrusive and (in my opinion) just need to be with me and my midwifery team.

Is there any other way? Why can't they just read it off my notes held at my gp surgery, why do I need all this responsibility when I'm about to go through baby brain and likely leave this booklet somewhere stupid for everyone to read?!

Everyone gets a pregnancy folder with all your information etc in that you have to take to every appointment/scan etc .. be pointless them being at your GP surgery if you have an appointment at just say the hospital.. certain areas do it all online but having to take a pregnancy folder around with you is normal... just put it somewhere safe and out of the way of nosey people. It isnt really that hard to remember to take it to appointments and not worth getting stressed out over x

If you don't want people looking at it then don't lose it and don't leave it lying around.

I think you need to address your landlord and family issues though. Your landlord has no right (it is literally illegal) to enter your home without your say so.

NHS computer system isn't linked up hence you need to carry your notes around.

Is there any other way? Why can't they just read it off my notes held at my gp surgery, why do I need all this responsibility when I'm about to go through baby brain and likely leave this booklet somewhere stupid for everyone to read?!

Because you’re an adult ffs and going to have to be responsible for another human being (and their paperwork), never mind just your own paperwork. Time to grow up OP.

Your landlord needs to request access 24 hours in advance of entering your home. You can deny them access if they propose a time that's not suitable for you. They most certainly cannot enter the property at any time that suits them. That's illegal.

Keep your notes in a safe place away from prying eyes. These notes are incredibly important and you will need them for every midwife and antenatal appointment. Once your baby is delivered, the hospital will hold on to your notes for you (or at least mine does).

My husband bought me an additional folder to keep my notes in, as well as any other prego related information and my pee sample pot (for midwife appointments). It might be worth investing in another, larger folder to keep everything in. You could even get one with a passcode if you're still worried about others accessing the information.

Because different settings often use different computer systems. Where I live the GP system is different to the system midwives use, the GP can't see results of tests that midwives perform. Also it varies in different parts of the country, so say you go visiting relatives and end up admitted to a different hospital due to bleeding (for example) that hospital can see your basic history, blood group etc and treat you accordingly without having to repeat a lot of blood tests.

Keep it in a zipped folder so it's not obvious to everyone. Don't leave it lying about if you're concerned. Tell relatives/landlords to keep out of you're stuff!!

If you can’t take responsibility for a folder of information it raises the questions how you’ll keep track of your baby.

This is normal and most pregnant women have had the same folder with lots of information about them.

1. Random people really arent that interested in your health tbh and 2. Put your folder in a safe place when not at an appointment and you'll be fine. Mine stays on top of the kitchen cupboard when not in use.

It's standard everyone gets pregnancy notes/folder. The reason being you take it if you have a scan, a midwife appointment or if unfortunately you have to go to A&E like I did. It keeps everything together and o believe the nhs systems don't link up (happy to be corrected)

Think you need to address the fact your in-laws look at private items and your landlord. Agree with the suggestion of putting it in a zip folder to make it less obvious. But in my opinion it's vitally important you keep them safe and remember where you keep them!

I can understand your frustration at the situation but your anger seems entirely misdirected.

You need the notes with you as what happens if you go into labour/get taken in for reduced movements/have an emergency and end up at a different hospital? It's your responsibility.

The issue you have is with

• you
• your landlord
• your in-laws

I'd resolve the issues with them and not the midwifes/NHS!

I'm not sure what the problem is here....surely you just hide your notes away if you're worried about people seeing them? Ask the midwife if they have a big opaque plastic wallet to put them in, that's what we get in our area.

Its totally standard for you to get the folder with all your notes. As previous posters have said, the computer systems at the hospital and GP surgery are not linked. Its much quicker for the healthcare professionals to sit and read paper notes than download your entire medical record from a computer (not that they can).

Think you need to resolve the trust issues you have with everyone else and yourself instead of blaming the NHS...

So buy something like this (cheaper options also available) and your notes will be secure from causal prying eyes

Keep them in a folder in the boot of your car. Can't forget them and they won't be lying around.

Hospital and GP systems are two completely different things. They don't talk to each other. You need the notes.

I think I might go back to the midwife and ask for a new booklet and ask her to put "refuse to share personal data" on the bits that I don't want to walk around with/risk ending up in the wrong person's hands.
Has anyone done that before?

I've already completed this last year so I'm ever hopeful it might include this booklet too.

digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe/how-we-look-after-your-health-and-care-information/your-information-choices/opting-out-of-sharing-your-confidential-patient-information.

I’m not if you can opt out when it comes to pregnancy notes simply because as others have said all the medical professionals involved in your antenatal care need to see them. They need to know your history to they know how to treat you.

Im totally lost at why its a massive problem for you to have medical history in this folder.. unless you are hideing some info from maybe a partner/someone else? Im not suggesting that you are of course you just seem to be really hung up on the fact that your medical history is in this folder and in all honesty it really doesnt matter. Like a previous poster has said... if god forbid you end up in A&E they need ALL your information thats in that folder to see how to treat you etc. X

Part of the point of it is that if you need to go somewhere (like a different hospital) that doesn’t have your medical information then you have it all.
I would agree that you could go back to your midwife to have some bits left blank but that does leave you vulnerable.
I think the bigger problem is your landlord and your in laws. Why would either of them do that and if they do then now is the time to have clear boundaries in place. Part of the reason I never allow a landlord in when I’m not there is so that my things can’t be looked at.

I had four babies 4 sets of notes never left them lying or lost them am sure you’ll manage. You should have them with you so wouldn’t be lying about and stop your landlord or anyone coming in and raking through your stuff

Surely the majority of the information is stuff either your partner/family.. possibly even landlord cause looking at my notes they’re not very exciting.. either already know (name, d.o.b, address, lock gps name n address) or they couldn’t give a flying feck about (blood type, length of cervix). It’s not like it has anything someone could use against you in it either.

If you’re hiding hiv or an std from your partner that’s a serious issue on its own.

Keep it in the boot of the car, bottom of the tv unit. You don’t need to take it to Tesco, just holidays, leaving the country, appointments with midwife and birth. It’s more a incase something goes wrong and you can’t just send someone back for them they’re instantly there.

Honestly OP, you're coming across as a little batshit. Be a grown up and look after your things. Put some boundaries in place with your in laws and landlord, or take steps to prevent them accessing your information. It's important you carry your notes with you a its the only way medical professionals can know your history and ensure you get the best care.

My maternity notes contain a lot of private and personal information, particularly in relation to my MH. I think it was very important to have that all there as I saw so many different doctors and midwives at various points that it would have been a pain to explain it all again (and again). I may not have thought some of the info was relevant but to the medics it was.

Yeah it's really not that big a deal, you're being a bit of a drama llama.

Our trust has stopped doing notes now so no having to carry notes with me this time around, which I'm quite glad about cos I always used to forget mine last time.

refuse to share personal data" on the bits that I don't want to walk around with/risk ending up in the wrong person's hands.
Who on earth do you think is going to end up with your notes other than medical professionals? As mentioned in-laws and landlord you need to deal with separately.
The information is to look after you and baby not to look and laugh at. When I ended up in A&E for HG they asked if I had my maternity notes with me, 12 week scan asked if I had notes with me. I really fail to see what the issue is.

OP I second finding a secure folder or a secure place to store your folder if you’re worried about people snooping.

I get that you feel vulnerable however as PP have said it’s so important for the medical professionals who may treat you to have all relevant information - especially if it relates to higher risk things like HIV status or STIs.

You could even do something like put the notes in a folder then liberally cover in duct tape so you would need scissors to get through it all. It would hopefully deter snoopers but you could just cut into it at any appointments and reseal.