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?

Notes may include information about other people, information provided by others. Most wont, but it does happen and if it is a thick case file then the staff dont know without checking whether there is or not.

diddl They were left on the meal table, right next to both patients.

I havanat had any other hosp experience other than birth - so I am personally only thinking of birth notes.

So personally I am thinking about the fact i specifically asked for an epidural and that wasnt mentioned in my notes expcept " pain relief discussed" it wasnt " discussed at all" I asked for epi and I was steered towards pethadine.

Also I would have known at the time my DD was back to back!

There are good reasons why I don't let my patients read their own notes and I am neither lazy nor inept. For instance I have come across patients who have recently been diagnosed with cancer but have not yet been told by their consultant. Should they be reading this for themselves or being told in a quiet, confidential area with an expert on hand to answer questions? There are lots of other examples where a patient could be distressed by reading something or even where it could breach somebody else's confidentiality (eg notes from childhood where a parent had given information which they might not want their child to know).

I'm surprised that other professionals are giving their patients access to their notes without going through the proper channels - if a patient came across information such as that in my example I would expect disciplinary action if I had encouraged them to read their notes, and rightly so.

If you are not supposed to read them, why are they left so accessible?

My husband was seriously ill and his notes were outside his room in the corridor for all to read when thr room was being cleaned.

I read them every day and am glad I read them because, one day, I found a doctor's entry saying that he should not be on oxygen any more. When I asked a nurse why he was still on oxygen even though a doctor had withdrawn it, I was fobbed off with an answer and had to argue, withdrawing it myself. When the doctor came round again, I mentioned it and her note in the records was highlighted. I was right.

If they are there, read them. My husband did not survive (but not because of the oxygen business).

I recently went in for a minor operation and I asked the nurse if I could read my notes from when I had ds2 (pretty traumatic aftermath of the birth and things were a little muddled in my head so wanted to read what happened so I could get things straight iyswim) she said 'oh no, you can't read your notes without a medical person there or I could request a copy'. She then wandered off with them, came back a few minutes later and did some obs, put te notes on my bed and said 'oh I've just got to do something, I'll be back in 15, don't go reading things you shouldn't now will you?', winked, drew the curtain round and went off to have a cuppa do that very important task.

I had a good nosey, got things straight in my head and have stopped having flash backs and negative thoughts about the birth. Was very, very helpful for me and I'm thankful of that nurse to have the common sense and foresight to help me move on. She was lovely and a credit to the nhs.

I work within this field in the NHS. All patients can request access to/a copy of their records, both electronic and paper. This is usually done via a request to the Health Records Department or the Legal Department. Arrangements can then be made either to supply the patient with a copy of their notes (a charge is often made for this to cover admin time, often a few hours of photocopying many volumes of case notes) or for the patient to visit the hospital and read their notes in the company of a designated member of staff.

Before the above takes place, the notes will be checked for references to third parties and for anything that a consultant considers could cause emotional or psychological harm to the patient.

Because of the electronic records and databases now in use, it is now very difficult to remove any chronological type information without leaving obvious gaps. These days medical staff are reminded that anything they write can be seen by the patient and acronyms like 'NFC' (normal for Cornwall) and 'DTS' (danger to shipping) are rarely seen.

I was involved in two cases where the patients had been allowed to read their notes on the ward and became distressed due to misinterpretation of the information contained within.

I appreciate that the above may seem somewhat over complicated and unnecessary but having had to deal with the aftermath of bodged access to records requests I believe that it is preferable to handing over notes at the point of request

All the above comes under the Data Protection Act. A request under The Freedom of Information Act relates to corporate type information, e.g. Please tell me how much your hospital paid its CEO last year.

I was admitted to hospital during this pregnancy and held on the a&e ward, and I asked the nurse to bring me back my maternity notes at one point so i could see what the hospital doctors had written in them and she said "you're not allowed to read those I'm afraid" in a very patronising way, until I pointed out that maternity notes were handheld by the patient and asked whether i was just supposed to selectively ignore the sections written by the hospital doctor.

When you're in hospital, sick, possibly confused, lonely, and the doctors (for good reason) can't spend more than a few minutes with you, being able to look over your notes can be a real comfort, and withholding them can really cause worry. I know we're not medical professionals but we're not idiots; i know we wont know all the medical abbreviations but if we've got a medical condition most people these days will know at least some of the medical terms around it. And the fact that we dont know about abbreviations doesnt stop some medical professionals using them to us anyway! (eg a midwife this week asked me if id been booked in for a GTT. I have, so i know what it is, but if i hadnt i wouldnt necessarily have the first idea what she was talking about).

So hats off to the doctor upthread who lets people read them. Informing the patient can surely only be a good thing, given that the patient is generally the only one who has been present for all medical services involving themselves so will have the best knowledge of their medical history.

I don't think everyone should always have access, small things like day ops or even childbirth is different but the process of diagnosis should be kept away from the patient without appropriate knowledge and support on hand. Every time they come across "test x to rule out y" most people will latch on to the y and start worrying. I have a friend who had a cyst removed but they ran some checks grading her for cancer just in case it was found during the operation, she was fine - just a cyst - but still refers to it as a cancer scare just because she read it in her notes.

Secondsop

No-one is arguing that people shouldnt see their notes, just that they should be checked first as Sorrel describes to remove things that shouldnt be passed on.

"I wish more nhs people were like Ilovedaintynuts"

Well I'm glad that I'm not. I work in an area of the NHS where people often ask about what the doctors have written. Should I really let them have a squiz at their notes where it says that they suspect cancer or should I let their doctor tell them?

Sorrel can I just ask, I get (NFC) being Cornish, I shall take it as a compliment if thats on notes but Danger to Shipping? Er does that mean rather large?

The notes are what people have written about us. They forget that we pay their salaries so why should they have secrets about us?

As I said upthread, if they don't want us to read the notes, don't leave them with us. If they leave them with us, be prepared for us to read them.

How weird. The only problem I can see is that that I might not understand them. So I read them and if there's something I don't get, I ask the doctor to explain. That's sensible, isn't it?

If people don't want you to read stuff they've written about you they shouldn't let you get your hands on it.

A boy punched me in the face once for getting in his way. Our teacher sent us both to the head. She sided with me and gave me a note. Which I naturally read because it was about me.

It said: 'Kevin punched Limited in the face but it's not as bad as it looks. I think her lip is bleeding because it's chapped.'

The head was indignant that I'd read a note intended for her. I was more indignant that my teacher justified a bully. I told her so. And my mum when I got home. She had something to say about it too.

I can't remember any teacher giving me another note to deliver.

Dreams - yes, a rather norty reference to the larger patient.

Rule Britannia

"The notes are what people have written about us. They forget that we pay their salaries so why should they have secrets about us?"

Because it might not all be about you. Sometimes it is about other people.

Perhaps abbreviations that might cause offence when explained, such as NFC or DTS, shouldn't be finding their way into people's medical notes to begin with.

mellen unfortunately my experience was that someone tried to withhold access my medical notes (the silly thing being that they were my handheld maternity notes that I could have walked away with at any point anyway), not that I was being asked to wait for the notes to be vetted.

I couldn't agree more about the use of stupid an offensive acronyms, hence the warnings I used to give to the Doctors during their induction sessions.

Zzzz - I take your point but Drs often work as part of a multi disciplinary team and need to record their suspicions in the notes for a) others in the team to read and b) for discussion at MDT meetings. It might often be appropriate for the above to take place before these suspicions are communicated to the patient. I would think it quite important for the Dr to record any worries etc in the noted at the point they occur. This may be whilst reviewing scans etc and the patient may not be in the vicinity.

i have read all my hospital and gp records and never had any issues when ive wanted to despite my mother writing my gp a letter many moons ago saying it would cause me emotional harm so i shouldnt be able to.

my gp quite rightly translated this as "when she was born i was rather crappy,over the years we have had issues due to this including me trying to cause problems with my gc my mental health issues have now been treated and as a direct result i am better,i would prefer it if my dc and her dc never knew exactly what i was trying to do when my gc was little, please help me to withold this info from my dc & gc so i can carry on pretending i did nothing wrong and my dc was the wrongun".

being able to read them solved a lot of worry i had and answered many questions i felt i needed to be answered. i now have a great worry free relationship with my mother as do all my dc's and have confidence in myself. my gp has allways activly encouraged me to read them, and given that the dc involved is now an adult has helped me put in writing that any info relating to me that i am legally able to give consent for her to see,should never be witheld from her records so if the suituation ever comes up again and causes her worry or doubt she will be able to see enough to know what was what.

fwiw should a doc think ive got anything like cancer/aids ect they should damn well be open about it.