I recently took the opportunity (was in the area so I booked time) to read through some of my recent hospital notes.
During a stay earlier in the year for physiotherapy, which was (and still is reguarly) needed following LD “option”, I had an informal chat with the nurse in charge of the unit and expressed various concerns about my surgery, surgeon and generally voiced fears etc. In no way was this a formal appointment or planned/booked. It was one of those “have you got a minute?” conversations that took much longer than a minute.
I now discover that this woman (not a BCN but does chaperone BC patients for a consultant when needed) has handwritten about 4 A4 pages of notes littered with subjective comments and opinions and with very few facts about my case. These notes are now there “in perpetuity” as it were and I’m not convinced it was ethical to do this without stopping me to say “I’ll record or I’ll need to record some of this”. I always assume that during official consultations of any sort that there may be some kind of brief record made but 4 or 5 pages worth is probably more than my surgeon ever wrote in the course of 40 months!!!
I know I can write to the hospital and have my notes added to by writing some kind of unsolicited “response” but I would rather that the notes were removed or expunged.
Does anyone know if they should tell you their intentions in this regard?
on one occassion i made a complaint about the treatment i had when attending the simulator session before radiotherapy.
i was asked if they could contact the radiotherapy department to inform them of the poor treatment i had… i dont know if anything was written in my file but i didnt want anybody else to experience the degradation i had endured so for me it was worthwhile.
i guess mine is a slightly different story because it was my breast nurse i was speaking to and her notes are separate from my clinic notes so other departments wouldnt have read them… although i havent read them either so couldnt say for definite.
generally i would have expected somebody to mention that were going to write something in your notes if it was of a sensitive nature… 4 or 5 pages does sound a bit excessive no matter what the circumstances and i cannot imagine any doctor or nurse actually bothering to read a letter that is longer than 2 A4 sides… none iv ever met anyway.
its maybe worthwhile to speak to you BCN about it assuming she wasnt mentioned in the notes.
Hello
I haven’t read my notes. Am interested to know: what do they record? I get copies of letters to my GP, but have no idea of what else goes into that folder… Every time you have a consultation/ring up, does someone add something to the notes?
There should be no subjectivity when writing medical records. If a patient raises an issue or concern then it should be recorded but in a succinct, objective way. Theoretically, the nurse was correct to record that you had a conversation and it’s general content. However, in practice, most clinicians won’t record general conversations unless they raise important issues. You have the right to discuss your notes with someone and your comments would be noted. Whether you could have the section removed is another matter. I would contact PALS in the first instance.
Personally, I ‘would take the opportunity’, again, and this time remove them and put them in your bag. They will never know. If you complain you will just add to the notes, whereas once lost they will be gone forever!
If you do remove the notes yourself you will need to ensure that there are no other notes from someone else on the same page! You don’t want vital information removing as well. If the notes are all on separate sheets then a different matter! Just don’t get caught.
It is going to look just a bit suspicious if I write asking to see my notes when they’ll have recorded my visit of last month!
I spoke with the Patients’ Association this morning and they say that she was not obliged to tell me she’d eventually make notes. Apparently members of staff can makes notes on formal and informal chats if they think your best interests are served. I would say that mine were NOT best served by subject remarks and dearth of facts but I would say that wouldn’t I?
I cannot get them officially removed but I can write a statement about the notes and this will stay on file so I will do that and then in a few months will ask to review notes again and ensure that my statement is on there. I’d also expect that they have CCTV in the office so “removing” them is probably not an option although it’s tempting to try I can do without a criminal record!
It’s just another thing we have to put up with and cannot do much about - who, if anyone, is going to read my statement before it goes on file? No one I’d say. I could always copy the “offending” nurse but it would probbaly elicit further notes - where would it end?
Lesson - from now on, going into any discussion at all with any medical practitioners I will be asking upfront about note making and be less open with them - not in my best interests.
Hi Reg
All information put in notes should be factual if it is subjective it should be like in “theire opinion” and be backed up by other evidence otherwise unless they are something like a qualified psychologist would not stand up to scrutany should it come to something like a hearing or tribunal which judging by what I’ve gathered from previous posts on here you probably have every right to.
Even not knowing your full history or anything I get the feeling that you have had a horrible experience which would break my heart if any of my patients had to go through it.Being a nurse myself, albeit in paediatrics it does sometimes make me wonder why some people ever bother to work with people if they cant care about them. (Sorry mini rant on your behalf but it does make me so mad)
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…well a friend of mine who is a health visitor, read her notes whilst she was a patient - if you get my drift. Didn’t like what her GP had said on her notes, so swiped them and then confronted her GP with them. I can tell you that they weren’t put back in her file (they weren’t given the opportunity), and the GP was very shamefaced.
I cannot see that this would be breaking the law at all - I think they would be on very thin ice- I do agree that there should be nothing else of note on the records.
When I sat and read through my notes I corrected one or two factual errors, you know the kind of thing, really minor details like RIGHT instead of LEFT. I read a note by a nurse that implied I’d discharged myself from hospital and the next item on file was my discharge paperwork! So the only thing that will stick in anyone’s mind is an idea that I was stupid enough to dischartge myself, never mind the facts an hour later.
Anyway, having made a couple of pen notes and left instructions on what to photocopy (and they always seem to charge as much as possible for that) I went on to an appointment. Some days later I had a letter saying that I shouldn’t have made annotations and admitting that they didn’t tell me this and that they should have told me this (I suppose I should have guessed) and that their procedures were now changing. As ever, trying to do the right thing, I called and apologised! The woman said that actually it was a good thing it had happened because their procedures were lax - tell me about it. If only they were so diligent when writing about LEFT or RIGHT. You can well understand how the very rare tale about someone having the wrong leg amputated (or similar) actually comes about - because no one casts an objective eye over what is written, nothing is verified, no one actually bothers because IT IS A BOTHER to check some letter or notes that are only going to be confined and consigned to a patient’s file and possibly not read again.
Even my oncologist has signed letters with left and right being the wrong way round - it is frightening really.
Oooh! This post is scary! I’ve probably got the most ridiculous set of notes ever. My behaviour was hysterical at one or two appointments and my language often choice. And I’m certain I said a few very stupid things as you do when you’re shocked/sad/scared/not particularly confident that you’re getting the best deal. No wonder my consultant looks ready to run for the hills when I go for a checkup. If it’s all there in the notes he’ll think I’m going to have a nervous breakdown. (As for confusing LEFT and RIGHT well that’s got to be sue-able)X
when i went for my repeat mammo of left breast the radiographer said oh its the right side… luckily i had been told it was the left by telephone and corrected her and she had to go and find some paperwork before going ahead.
she came back and said oops you were right and i was wrong!
if they hadnt said on the phone i would have been none the wiser and they wouldnt have seen any cancer on my right side.
I’m interested in this post in a more general way.
I have had copies of the correspondence between my Onc. and the GP but it had sort of passed me by that I could look at my whole file. Is there a big procedure to go through to do this?
I have had one or two outburst of various kinds re my treatment - the first was for being kept waiting for far too long in clinic for (bad) results and I had rather assumed that my distress and upset would have been taken as read- and therefore not recorded (as it was quite justified in my view!)
I later had several major whinges re my experiences in the v. grotty chemo dept and during an admission to the oncology ward which resulted in me complaining by letter and two meetings with nursing"matrons’ - I assume that this will all be on file?
Incidentially I also had a typo on one of the letters that I did see which recorded that I had had 15/15 nodes removed, all FULL of metastasis- instead of all FREE of metastasis!!
It is part of a patients right to see theire notes if they want to. all you have to do is put in a request. However there should be a nurse/dr with you at the time to ensure all medical jargon is understood, if thers is someone you like/trust you could request them. This is because the med proff often uses terminology in a way that is totaly different to non meds and its quite easy to scare yourself silly, or become very upset if you dont know what “they” understand by it.
(an example off the top of my head - hope nobody gets upset by this but its the only one I can think of off pat that most people could understand, all miscarrages are termed medically as terminations, you can imagine how horrified a woman who is desperate for a baby would feel if she read this in her notes with no one to explain that it isnt ment in the way she’d think)
As to typing errors, yeh know they do happen most doctors dictate notes and these are then sent to secetaries to type up and later they are put in the notes, some secs are brill others are rubbish and the docs dont always get the chance to double check.
I have read reports in the press that some health authorities are now outsourcing typing to save money and are using typing services in places like South Africa and India where often the medical terminology is not understood or the typists have less than brilliant English skills. Shocking to say the least.
The info that I have just discovered is that they do not seem to send you all the correspondence between the professionals, they just send you some - now what is that all about. I just found out about that when flicking through my file, I think they have a two tier system going on. The one they didn’t send to me wasn’t negative, but it had far more subjective info on than the one they sent to me.
Thanks for these points, Celeste , Cherub & Glenna. I too trained as a nurse so would understand most of the jargon- but do take your point re the medical language.( eg my husband was described as ‘chronically ill’ in a letter which I think most of us would interpret as meaning he was quite disabled by illness or in a wheel chair etc - rather than that he has a common medical condition for which he takes a couple of pills every day!
I can understand that Topsy - my brother has been Type 2 diabetic for over 10 years now and is referred to as this, yet he leads a very full and active life including work. As long as he takes his meds and is careful with his diet he is absolutely fine.