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 thought it was awful when they kept the notes at the end of the bed and random relatives would have a nose whilst the patient was asleep/unconscious.

I know I wouldn't want certain relatives reading my medical notes no matter what state I was in.

I hope they don't do this any more.

In one of the hospitals my kids have been treated in you are handed your full notes at outpatient checkin and hand them to the staff in the relevant department yourself. I've had a good browse of the dcs files...

In another hospital where ds2 was having day surgery the notes were left onthe bed. A few nurses and doctors walked in whilst I was reading them and none were bothered.

In both cases the notes include full history held by that hospital, for example ds2s notes include ENT, paeds and a&e reports, test results, letters from psyche, SALT and between consultants, his birth and SCBU notes (including comments about me) and any referral letters.

Not NHS though so laws on data may be different

That's awful Secondsop I think I would've done the same as you. I know from attending oncology follow up appointments with DS when he was in his late teens that there is an assumption that if you are in the room with the patient they can discuss anything with you there so your concerns are totally understandable to me. After cringing my way through a couple of appointments where the consultant has asked DS about sexual function I suggested that maybe he should go on his own in future.

DS is 25 now and I've told him that I considered a termination but wouldn't have been able to go through with it, which is true. I was also far too pregnant for a termination but even if I hadn't been it would've made no difference. But if I'm honest, I'm not sure that I would've told him had that page not been in my records. I just wouldn't want to risk him reading that years from now when I'm in no position to explain. Am so glad I had the chance to see it, our records shouldn't be kept from us.

Maybe the problem is with more historical records for older people in that years ago the staff didn't think the patient would ever be reading the records. It's fairly common knowledge I think that drs used to use rather rude abbreviations to describe people.

When I had surgery for an ectopic pregnancy, the lovely nurse showed me my notes with the photos of my ovaries and previously undiagnosed endometriosis
It was fascinating.

And if HCPs don't want patients to read their notes then they should
a) not leave notes lying around the ward
b) not write stuff that they want to keep 'hidden'

I always read everything medical staff write about me to check it makes sense and we've understood each other - never had a problem except with the odd private doc who resented it when I scooted my chair round to his side of the desk to watch what he was writing/typing. I'm deaf so reading the computer screen is the easiest way for me to understand if I can't understand the particular medic.

Highlight was about 18 years ago when at the GP the previous snotty GP (who I later found out was a different person from the one I'd seen the previous week, but not knowing, I thought it was the same one) had written notes and new lovely GP showed me the screen reading "She needs rather intensive psychiatric help" and typed "Oh no she doesn't!" We had a few rounds of "yes she does" "no she doesnt" over the next few months...

Though recently I passed a trolley of notes in a hospital corridor, and the front one had a big piece of paper stuck to the folder which said "Do not let patient read these notes!" - a couple others had these but most didn't. I was tempted to read them to figure out why! It was in cardiac rehab which I wouldn't have expected to be controversial.
But if notes that aren't for patients to read have to explicitly say so, that suggests all other notes are for patients to read if they want.

Also - if I was elderly and ill, but otherwise rational and competent, I'd want to know if my darling offspring had been telling people I was suffering from dementia. Not everyone's friends and relatives are selflessly supporting the patient.

It's very interesting g though, as midwife notes are held by mums and remember reading mine loads.
I'm tempted to ask to see mine as there was a point a few years back that I was very unwell after being sent home when I shouldn't have been. I remember nothing of night I was admitted and the next day the doctor said I had scarced them that night, I really don't know what happened
I really think its inappropriate that doctors can remove notes that they deem are too damaging for us to read!! Seriously, if it's happened to me I'm pretty sure reading about it wouldn't be half as bad as it happening.

Are you allowed to request your child's notes?

I've spent years of my life in and out of hospitals and I have always read my notes. And I have never been told that I cant by anyone.

I am sure the real reason they want to vet them first is because of the abbreviations they use as told to me by nursing friends.....for instance..

FLK/FLM = Funny looking kid/mum
GOK = God only knows
NFS = normal for swindon

and other such lovely descriptions ;)

lisad yes you are - my neice got her baby's notes after they had serious problems straight after birth.

I though it was NFN - normal for Norfolk.

I can see both sides of this. I have read my notes. When I was moving out of London and didn't know who my new consultant would be I was given a photocopy of my notes.

On the other hand whenever I was asked if I could read an ECG by a patient I would say that it was the doctor's responsibility to explain it to the patient because the Dr has access to the blood tests, history etc etc and has the complete picture.

I not only read my notes, but I have added my own! It is extremely useful to be able to dispute things in notes, and have it in black & white at the time if you have the misfortune to have to make an official complaint later. Obviously I knew I was going to, or I wouldn't have been doing that. Even so, I was shocked by the inaccuracies or plain mistruths.

In a totally different incident, I happened to see my GP notes on their screen and discovered my son's HV had actively lied to our GP. That was investigated, she was was found to have lied and disciplined but they would not remove the entry - just added a new one. Slight tangent there, but it is good to read your notes and keep an eye on them. Unfortunately.

"Seriously, if it's happened to me I'm pretty sure reading about it wouldn't be half as bad as it happening"

lisad123 that's spot on!

I really don't think those abbreviations are used anymore. It would be a stackable offence where I work to use them.

Someone asked about why there might be stuff about other people in a set of notes. I sometimes put stuff about other staff in a woman's notes, mainly to cover my own back.

Eg, "I have asked dr smith to take x back to theatre as I am concerned about the fact she's now lost 2ltrs of blood. Dr smith is aware of ebl volume and that blood loss is ongoing but states that this is fine and that I need to calm down" "coordinator Y aware and consultant to be rung."

So if the patient has a cardiac arrest my backs covered and the dr can't say he didn't know.

But I can see why a hospital might be concerned about something like that. However they shouldn't remove that as it is about that patient and they have a right to know. Not sure if hospitals may attempt to blank out the drs name in such a situation? Not sure if they're allowed to.

The information that would be deleted is NOT about doctors and nurses but about other third parties, such as information about the patient's husband/parents etc as explained above.

The whole abbreviations are a bit of an urban myth now and are really not used, if indeed they ever were! I have never, never seen any of them in the hundreds and hundreds of notes I've used over the years.

The medical notes are there for pertinent medical information and to pass information on between people caring for this patient. They are not there for the nursey excuse, "But I just need to cover my back." We are supposed to be professionals. If you think something is wrong, escalate it. Don't just absolve yourself of responsibility by writing it in the notes!

"If you think something is wrong, escalate it. "

In the example she gave, she did escalate it, to the coordinator and consultant. But if it isn't in the notes it didn't happen and it's perfectly sensible IMO to document such an incident in detail for your patient and yourself.

I have a number of pretty serious medical conditions, and am frequently in and out of hospitals. For some reason, although GP notes are transferred when you move, hospital notes are not. Therefore, every time I have moved house and therefore ceased being under the ongoing care of a particular local hospital, I have coughed up and paid the £50 to obtain a copy of my notes from that hospital to keep myself.

This has proved invaluable. For example, if a later dr ever asks if I've had a particular test done, or suffered from a particular infection, etc etc, I can simply go back to the notes and photocopy the relevant section for them. I think it helps that I have a medical background so I know which bits of information would be helpful to sift out, but somethings, like surgical histology reports or microbiology results, can't easily be replicated, and are often not contained in clinic letters to GPs.

I have to confess that I am a weed though and don't tend to do this until I leave the area in case the current consultants think I'm doubting them or something!

BartletForTeamGB You must have a terribly low opinion of your colleagues. I wonder what they think of your attitude.

There is nothing wrong and plenty right in the kind of notes Viva mentioned. It clearly lays out that she HAS escalalted the problem. In my experience of these situations, when I say I am going to escalate my concerns it usually motivates a reluctant doctor to come and make an assessment. If it does not then I would definitely document what I have done to escalate to the correct people. Why would I not want to demonstrate that I had made a professional assessment and acted accordingly?

But sometimes you have done all you can to do your job and pushed and pushed. All you can do is note what you have done and said and to who. After that there is little you can do, but atleast if it's noted they can't say you didn't try.