Reading your own notes in Hospital

[QueenSconetta]

I was in for a day op on Thursday, and a couple of the other patients were told off for reading their notes by the nurse. She said they could request a copy of them but they were not allowed to read the ones which were there.

AIBU to think this is a bit bizarre? It is more likely IABUninformed. Anyone know why your not allowed to read your own notes?

My mum could have done without reading her notes after her 2nd baby was born and died a few hours later - he had some congenital deformities and was described in the notes as "Monster". She was distraught about that descriptor, although it wasn't abnormal for it to be used at the time. :(

However, I always read my notes, and my family's, given half a chance - because I'm the one with the medical background. I don't understand all of it, not being a doctor - but I do understand most of it, and certainly enough to ask pertinent questions where necessary.

If someone leaves my notes next to me, I will read them. If they are unhappy about that, tough.

YANBU.

My medical notes are about me, and I feel that if I want to read them, I should be allowed to without someone else being expected to edit them for bits that I might find distressing. If I was in hospital, and my notes were left next to me, I would read them.

DS was in SCBU for a few weeks after he was born, and the neo-natal staff gave us full access to his notes, and actively encouraged us to read them.

Bartlett - I'm not a nurse never mind a nursey.

I'm a midwife and we write in the patient's notes, its where we're supposed to write. No idea where nurses write. The example I gave would have been written on the partogram which is then filed in the main notes. I've no idea what level of documention nurses are supposed to complete but believe me what I wrote is very much the level of documentation I'd be expected to complete.

Medical / hospital staff should not prevent you from seeing your notes. So what if they've tested you for cancer and not told you about it? Can you imagine going into a bank and having them tell you you cannot see a statement in case you find it distressing? It is yet another way of them keeping control over patients. These attitudes may have been appropriate 60 years ago, but they are unfit attitudes for the 21st Century.

And for those who have said a nurse / midwife have left you alone with your records for 15 minutes and given you a wink - be very careful. They are lulling you into a false sense of security and pretending to be your friend, so you end up trusting them more than perhaps you should - they are covertly controlling you. They should not let you look at your records 'on the quiet' - it should all be open and transparent, with no winks necessary.

Pseudoym, you are wrong. People are entitled to see notes, but they have to be checked first. There may be third party information within them which should not be handed over.

ive read my own notes and pointed out to them that they put my meds in wrong they messed up the dose and tried to tell me i was wrong about my condition said i was an under active thyroid when i know ive an over-active one big difference medically speaking i pointed out to them that i had 11+ years experience of my medical condition they had known about it for one day and were a lot less qualified than me as regards my condition and medication they finally called a doctor who said no the patient is right you got it wrong!! i always double check my notes

I had a home birth with my last surrogate baby 4 years ago and at that time was given my full medical (not just maternity) notes to keep at home in preparation, is that unusual? They went right back to my early childhood so I could see how hard my parents pushed for tests for me which came back as fine - it was only as an adult it was realised that I have spina bifida with tethered spinal cord syndrome and all the symptoms fit right from me being a toddler.

Like StormGlass, my DD spent time in SCBU (although only for a week), and the staff in the hospital DD was transferred to were really good about explaining what different things meant on her notes/observations (I could most of them out myself, but they were happy to confirm my guesses as well).

I'd like to see my maternity & labour notes though as when I transferred, I was given a partial file and I kept being asked if the original hospital had given me the rest of my notes. Considering that I suspect someone at the original hospital broke DPA regs by informing an estranged relative of DD's birth and transfer, I'd really like to see them.

"It is yet another way of them keeping control over patients. These attitudes may have been appropriate 60 years ago, but they are unfit attitudes for the 21st Century."

Hear hear!

I was asked not to read my notes last time I was in the hospital. It seems they have changed their policy lately. It made me cross as I don't like to be treated like a child.
My notes are full of comments about how polite I am. My mother would be proud but I fail to see how it is relevant to my medical condition or treatment.

I read my notes when I was in hospital. For most of the time when I was in, the notes at the bottom of my bed were nursing observations. However, on the day of discharge, my full notes appeared at the end of my bed. I was bored, so I read them. A nurse saw me reading them, and said that I wasn't supposed to. It didn't stop me though, and within minutes everyone on the ward was reading their notes.

My notes were very accurate, and mostly contained letters that I had been copied in. I was interested in geeky details, such as the brand of medical device that had been put into me. There were no inappropriate comments.

If you're talking about the notes they leave at the bottom of the bed. They're just about your stay and condition whilst in hospital aren;t they - they don;t include your whole file surely with notes of phonecalls from third parties etc?

They generally contain that much except obs results in my case and in any event - how on earth do they stop you reading them?

Third parties can be peole yu don't really expect such as 'Oh mr X has such and such a thing which is similar to MrY '
It also allows for correction of some inappropriate wording.

Of course neither the nurses or the doctors are supposed to do so but it does happen and the 'asking before' policy allows for these corrections.

Information from relatives etc should not be entering your records without your knowledge, otherwise how are you supposed to protect yourself from staff acting upon inaccurate information? If a relative offers a doctor or nurse information about a patient, then that doctor or nurse should say to the relative that it will have to be discussed with the patient, if you wish me to enter this information into the patient's records, then your consent is implied that this information will be seen by the patient should they look at their records. Simples.

Information from relatives isnt the only third party detail that could be present.

Have just had DH in Hospital for 4 weeks and the notes aren't left near the patient. The nurse brings them around when the OBS are done.

Everything else is entered on a centralised computer under the name of the person who has just seen the patient.

Everytime I requested any information the Dr. or Nurse would go to the computer , punch in DH's name and everything would be displayed.

The only thing actually written on notes is temperature, blood pressure etc.

I had the opportunity to sit and flick through my notes when I was in hospital and was being transferred. They put the huge folder containing them on my lap to give to another hospital, so I had a quick look.......

I found that the "complications" I'd had while under anaesthetic was actually that I'd stopped breathing for a while. I wasn't told this had happened at the time and I did ask why my op had taken so long (should have been 1 hour op but I was there almost 3) and was given the "complications but nothing serious" reply.
When I questioned and the nurse had a good look for me, she said I wasn't told as not to worry me. It wasn't because anything was wrong with me nor did I have a reaction to the anaesthetic,It just happened, so didn't need to inform anyone in future ops. I think it was wrong to do this, but then I'm a natural panicker, but what if a surgeon missed that part in my file and wasn't aware what had happened before.....I've had other ops since and was fine so obviously I wasn't being lied to but they should tell patients everything.

Also found that when I haemorrhaged after DS2's birth....apparently I "steadfastly refused" a transfusion... I bloody well didn't! I said I wasn't keen on having it but would consider it if I continued losing blood and that I had more questions about it.

Also found notes belonging to 2 other people in my file.

Dh consultant copies in every letter he sends. I think it's a better way of doing things.

I am not sure about writing this, but...
I had a 'routine' 20 week scan, at which the scanner said 'of course you know about the missing limb'.

When I burst into terrified sobs, she said in a horrified voice ... 'but it says it in your notes...'
We had no idea - the only clue being that I was asked to repeat my 12 week scan because the (different) scanner couldn't see the whole baby properly.
Later on (after losing dd at 24 weeks who couldn't survive with all the other complications that went with the missing limb), I asked for my notes and there was no mention of it at all until the 20 week scan. I suspect that the notes were changed, but obviously there is nothing I can do about it (and actually wouldn't want to - the whole experience was traumatic enough without getting bitter about it).
Sorry, I suppose this is nothing really to do with being able to read your own notes, but perhaps I am saying, to avoid cock ups like this in busy hospitals, patients should be allowed to see their notes whenever they want to, so that they can keep an eye on their own lives?
But perhaps that is naive.