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?

I've always seen and photocopied my own notes. I have a complex health condition and notes don't seem to be passed between health care professionals, so I keep them.

Bloody good job because when I was in labour I had notes from my consultant saying I shouldn't have a particular drug because it could affect my other medication. I was almost given it, only DP checked my notes first and stopped the midwife from giving it to me. Also, I had two folders for my pregnancy, the official blue one and my own green one where I kept letters from my specialists. I showed the green one to one of the obstretic consultants so she could understand my condition better. She took it away lost it. :(

I always read my notes. I have a medical background and don't need help with abbreviations etc. I've never been told off for it either! I was always taught that if you think the patient would be offended by reading it, you need to rephrase it!

This is something of a sore point with me. I have noticed that they no longer leave detailed notes at the end of a patient's bed, which can be a real nuisance for families.

My mum was in and out of hospital many many times throughout the years of her illness, and sometimes her notes were the only information we could get. Doctors mysteriously disappeared at visiting times, and actually getting hold of medical personel who tell us anything was a major feat. Mum had complex medical issues, and it was only from reading her notes that we managed to stop lots of mistakes- eg she had bad reactions to certain drugs, but they put her on them anyway, that they had suddenly withdrawn her (high dosage) steroids, because they "forgot" to give her them. Once they discharged her, vomiting, having put her onto digoxin and without running bloods for digoxin levels (they said they "thought" that had been done. It hadn't. I refused to take her home until digoxin levels were done (I'm a vet, and realised that, as my mum was renally compromised, there was a high possibility of digoxin toxicity) They did the test and very hurriedly took her off the digoxin. What if I hadn't known and taken her home?

Later the notes became unavailable. That is why, when she drew her last breath and the nurse told us that she knew my mum was "DNR", it was news to us It had NEVER been discussed with us, and my dad would NEVER have agreed to it, but it was in her notes...

My uncle is currently in hospital suffering from bowel cancer and the patchy information we are able to get is confusing, illogical and raises lots of questions that noone is around to answer.

If I or my family are ever in hospital I will pay whatever the hell it takes to see my/ their notes and make sure everything is in order. Communication in the NHS seems to be absolutely shocking- not just between doctor/ patient/ family, but even between departments/ staff/ colleagues. It must surely be the cause of many a fuck-up

zzzz I think you are right, things must work differently here. All that is at the end of the bed here are obs charts and current medication charts. I presume your notes are kept in the ward office or similar.

In the case of the day unit the notes moved around with you (to theatre etc) so were not stored away.

Hoping not to out myself, but to clarify, I was in for a D&C and my notes appeared to be all my Ob/gyn notes as there was a folder with this years date on and another folder with the year my DD was born on it, which are so far the only years I have had dealings with this specialism.

if they leave the notes by the bed (as they did on the mat ward when I had lat dc) of course I would read them.

if the don't want you to they should be kept securly somewhere.

I also had some inventions and omissions in my notes...

I'm glad they don't leave detailed notes at the end of the bed anymore. I've had visitors pick them up and have a nose. It's very difficult to object when you're lying there in bed and you're meant to be grateful that they've come to see you.

I'm in 2 minds about this. My dd was very ill with breathing difficulties in her first 6 months - she was hospitalised several times with colds during this period. The first time she was in hospital I read her notes and was told off - I got a bit uppity about it (they're about my daughter, etc) and read them again when they weren't looking. I saw that they were querying cystic fibrosis, had a massive panic, googled it, found myself doing daft things like licking her knee to see if her skin tasted salty, basically got myself in a right state - it was ruled out and I never needed to know about it. That said, I do think you have the right to see what has been written about you.

ThePlatypusAlwaysTriumphs
Well said!

I think there's a big discussion between "discouraged" and "you're not allowed." One ends with "thankyou for your concern" and the other ends with "ripped from my cold dead hands."

Unbelievable mirry2

Both my experiences are pre DPA but after I'd had DS and was on the post-natal ward the midwife asked me to check that my notes were filed in order as she was too busy. I thought it was a bit odd but I think she was offering me the opportunity to remove the first page which said I'd first presented considering a termination. I didn't, being a 19 year old civil servant worried about tampering with official documents but I do wonder if that page is still there.

And when DS was in hospital for 5 weeks I read his notes every day. Good job I did. One of the Drs on rotation had written that he was 'difficult and manipulative' because he got very upset and distressed at having to have yet another canula in the back of his hand. I think it was canula number ten or so. He was 8 and recovering from neurosurgery. We got an apology and the offending comment was marker penned over. I don't think she was paedatrician material tbh.

And I actually found it fascinating to read the notes about his surgery - once he was on the road to recovery - which listed all the equipment they had used - including drill bits , how many swabs, pints of blood etc. I actually copied it all out. But I'm a bit weird I guess.

I was going to come on and say that I had mine all the way through but I realise now that it was because they were technically maternity notes even though, in the end, due to circumstances they included complicated emergency surgery and intensive care stays etc. After the case review I applied to have a copy and they sent me the actual ones for no charge, they must have photocopies at the hospital. Very odd.

I wonder, if a random selection of people were given their notes to read, how many would find incorrect and/or offensive material written about them? This should be a very rare occurence if it happens at all but it seems pretty commonplace

I read mine.

In fact, the ones they sent home after I had DS2, I photocopied before they took them back.

YANBU you have every right to read information about yourself. I have done on occasion.

I want to read my notes now

I usually look at mine. It's even better if my sister is around as she understands all the abbreviations.

I remember the notes after I had DS, we'd had that first dreadful night of no sleeping and crying (both of us) but at 4am on the second night a midwife had put 'Meglet and baby finally asleep'. .

V interesting debate and one which is live in the medical profession currently.
Recent issue of the BMJ had an article about how electronic hand held patient notes are the way of the future.
I work with people with enduring mental illness but I still massively support openness in nearly all cases. I not only copy my letters to patients but lately I've even started to write to the patient with a copy to the GP in some circumstances. Many of my patients have a view of their illness which differs substantially from mine (ie they think they don't have any illness) but I try never to write anything down that I wouldn't say to their face. It doesn't mean I leave relevant stuff out of letters it just means I have to have more difficult conversations explaining why I think the conspiracy or whatever is a sign of mental illness.
Having said all that I still wouldn't just leave someone in a room with a bundle of notes. Fairly often they do contain information about other people or confusing medical-speak.
If you get serious about being completely open it does really change your practice and you have to think of ways to have a discussion with someone about eg a suspicion of cancer rather than just doing stuff over people's heads.
A lot of people have mentioned examples where it would improve safety for patients to have their own records because lets face it the patient knows and cares the most about their own illness.

I wish I'd never read the obgyn notes after DD was whisked away to SCBU aged 12hrs which described me as 'hysterical'.
It was factually correct, I was! But it seemed to me a bit pejorative. There was an implication I was over-reacting whereas I think anyone would be devastated to be told their newborn was seriously ill (she made a full recovery thankfully)
If it was a given that everyone read their notes I wonder if a different word might have been chosen. It did have a knock on effect on my relationship with that particular Dr who I never felt comfortable with afterwards.

mamadoc well done to you, I completely agree that people with mental illness should be able to see their notes in the same way as anyone else.

Out of interest, why would notes "contain information about other people"?

A lot of factors could be relevant to someone's MH condition eg family history so there might be info about another family members diagnosis (patient would likely know anyway but possibly not)
Life history and social circumstances are relevant so there could be info about parents or partners.
eg what if I knew that the person the patient believed to be their father wasn't? I might be told that in confidence by their mother because of trying to establish their genetic risk but I wouldn't have a right to tell them or let them find out.

bustersofdoom you've reminded me of something that made me glad I read my maternity notes closely (not quite the same issue as these notes are held by the patient but still relevant). I'd had a termination years ago that none of my family know about and this was in my midwife's notes but kept confidential so not in my handheld notes.

However, one obstetrician, when asking for my history, wrote "G3 P0 T1" or whatever the abbreviation is for "3rd pregnancy, 1 termination, no live births" in big writing on the top of the front page of my handheld notes despite me saying to him that the termination was confidential so not in my handheld notes. I worked out what his note meant when reading through later and got upset because what if my mum or sister came to a future appointment with me and the next doctor raised it? I put a sticker over his note in the end. But had I not been able to read the note and worked it out, the doctor's mistake in writing it on my notes could have had very upsetting consequences for me.

Tudor - In the wards I work in, family members / others will often be giving information about the patient, so you might well find something like 'daughter says patient's memory has been getting worse recently' or maybe 'patient's neighbour is worried about her increasing incontinence and reports the house is full of maggots and patient often appears unkempt' etc.

If the patient read that it might cause a problem with their relationships.....yet it is still information that needs to be known by the team as it might have a bearing on the patient's condition and on things that need to be sorted before they get discharged.

You also see the A&E notes saying the initial 'working diagnosis' which might end up being something completely different once various tests have been done. It would be very worrying for the patient and family to be aware of this at such an early stage. I certainly wouldn't want to know until they had actually figured out what it was!