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NHS medical records app - shocked by what I've seen

108 replies

InShockAndWorried · 06/09/2023 17:07

So I've been delving into historic documents on my nhs medical records app

Filed away dated in 2016 is an urgent gynae cancer 2 week referral letter - my name address phone number are is on the form but none of the reasons for referral had been ticked

IM IN SHOCK I know absolutely nothing about this! I'm wracking my brains and honestly am sure I'd remember something like this - there aren't any corresponding appointments detail records noted around that time on my app records.

I'm somewhat panicking - wtaf!!

OP posts:
Ollifer · 07/09/2023 15:54

purpleme12 · 07/09/2023 07:26

@Ollifer why can't you get it removed? I don't understand.

This is all really really worrying

Well I need to ask for a referral to a psychiatrist to be evaluated and assessed apparently as it's on my records that I have the diagnosis. They've told me they are unable to remove the code as it wasn't applied from that practice. It's came up so many times, I have endometriosis and when I ended up in a&e before diagnosis as I was in agony I was being asked lots of questions about the bipolar and I felt they didn't believe me or take my symptoms seriously as they clearly thought I had it and was lying/no insight!

Lizardonachair · 07/09/2023 15:55

Someone I know turned up for his appointment but he was dead...luckily he was relieved that this wasn't the case and he had been mixed up with his twin brother of a similar name and date of birth (who was indeed dead).

Oblomov23 · 07/09/2023 16:12

GP surgeries just don't care if there are mistakes, you can't get it removed, only a note about it put on.

EvelynKatie · 07/09/2023 16:14

Lizardonachair · 07/09/2023 15:55

Someone I know turned up for his appointment but he was dead...luckily he was relieved that this wasn't the case and he had been mixed up with his twin brother of a similar name and date of birth (who was indeed dead).

This made me laugh, I mean, this thread as a whole is eye opening. I don't have access to my records as need to get a code from the surgery, now I'm thinking I'm best off not knowing!

higlosspolish · 07/09/2023 16:33

The inappropriate comments about my "delusional" status and "unfettered access to her breasts" means I will never again subject myself to mental health services who are, frankly, a law unto themselves. There is no accountability in the medical profession whether NHS or private.

RuthW · 07/09/2023 16:38

Florabundance · 06/09/2023 19:16

After downloading the NHS app I found details about two operations I had which were incorrect, when I moved areas recently and registered with a GP at my medical I mentioned this, GP wasn't remotely concerned.

The gp won't be. You need to talk to senior admin about this.

RuthW · 07/09/2023 16:39

rileynexttime · 06/09/2023 17:51

I'd like to look at mine but when I tried via the app it said I had to get a code from the surgery.
When I asked I was told that the practice weren't participating .

They can't actually say this. They have to participate (this is part of my job)

Mothew · 07/09/2023 16:46

My records on the app are full of mistakes, thankfully minor ones. I do wish patients could add notes to them though.

Ollifer · 07/09/2023 17:01

I got mine printed out, i don't think they can refuse as it's your personal information

Doggymummar · 07/09/2023 17:03

Mine contain a suicide attempt. It was an accidental overdose of 8 paracetamol in a day.

rileynexttime · 07/09/2023 17:46

@RuthW thank you for that clarification .
perhaps the receptionist wasn't quite on top of it and thought the fact that they weren't in the scheme yet meant = not participating.

higlosspolish · 07/09/2023 18:09

If anyone needs to make a subject access request here is a template from information commissioners office:
ico.org.uk/for-the-public/your-right-to-get-copies-of-your-data/preparing-and-submitting-your-subject-access-request/

Noselikeyorkshirepud · 07/09/2023 18:51

You should all make requests for notes of amendment because actually the info is very often fed into hospital data if you get a gp referral for secondary care which then gets recorded and used for national level data on comorbidities and revenue for hospitals etc. It is important.

MikeRafone · 07/09/2023 18:51

Oblomov23 · 07/09/2023 16:12

GP surgeries just don't care if there are mistakes, you can't get it removed, only a note about it put on.

I’ve had my mistake removed, it took a while but it’s gone from my records

Noselikeyorkshirepud · 07/09/2023 18:54

Although I'm not gonna join in and slag off gp's and gp practices. Tony Blair fucked them over and their workload is just awful.

greenacrylicpaint · 07/09/2023 19:25

sadly that should shock me but doesn't.

when moving away from uk I asked for my records to give to my new family dr.
apparently no record of me existed. despite being with the same surgery for 20 years...

off · 07/09/2023 19:29

Part of the trouble is that, on top of full-on errors, there's no real hierarchy of information on GP notes — it all seems to be presented equally, at least on the electronic front page.

I've had consultant psychiatrists spend months holding back on a diagnosis, gathering information, observing me over time, assessing my response to medication etc., before eventually committing to a considered diagnosis of bipolar disorder, which then duly appeared in my GP record as an active health condition.

I've had in-depth neurodevelopmental assessments by specialist psychiatrists, involving huge amounts of data-gathering and careful analysis, resulting in an ASD diagnosis on my active list.

But I've also had a rushed out-of-hours GP speak to me for two minutes before prescribing a couple of dozen diazepam, whose quick schizophrenia diagnosis immediately took top billing on my list of active conditions.

And there seems to be limited time available for cleaning up notes, too — my "active" conditions list is littered with older, inaccurate diagnoses, diagnoses that once fitted but no longer apply, current diagnoses with no start date, and things that were at one point suggested as working diagnoses. And that's just the psychiatric stuff.

For a busy GP who's got just a few minutes to scan my notes, talk to me, consider the possibilities and form a plan of action, there doesn't seem to be an easy way to look at the list of "active" conditions and tell the difference between

  • a current, solid, carefully-considered, well-evidenced, long-standing diagnosis by experts in the field
  • an old and inaccurate or outdated diagnosis from early in the course of my condition when things were less clear, and
  • a momentary impression jotted down by a generalist in a hurry.
Unsure754 · 07/09/2023 19:52

Mine says I have depression and also talks about scald burns to my back.
Neither are me, doctors don’t seem concerned or surprised that records are very wrong!

hoteltango · 07/09/2023 21:43

My GP practice uses Patient Access - which I use to request my repeat medications. I've just had a look, and there's an option I haven't seen before, which is to download my entire record, which I've done. It might be worth others looking to see if they have the same or similar option.

There's nothing much to see in my record. Certainly nothing I wouldn't expect to see. But the earliest date is 1985 and I had already transferred to that practice a few years before then - certainly before I had DC2, of whom there's no mention, nor of DC1, which I would have thought to be relevant to any possible future health issues and easily added.

HiCandles · 07/09/2023 22:02

@off you have explained part of the problem extremely well. I am a GP and there is just no time possible to do any sort of clearing up of problems lists. It's actually something of a personal bugbear- I do attempt a tidy up sometimes, especially if it's a new patient and none of their very significant medical diagnoses are showing in Active problems, or if we've got a totally nonsensical list of 'diagnoses' like 10 childhood colds, attended for vaccination and notes imported. I have a GP colleague who says he never bothers to code, so he's merrily diagnosing away, writing as free text, and yet these things will never show as Problems of any kind. It's terrible negligent care in my view but put down as his own way of practising.
I'd encourage anyone to book an appt if you suspect inconsistencies regardless of flu season etc as PP says above. Normal healthcare still continues.

backoffbuster · 07/09/2023 22:22

I checked my record in the nhs app, and the only thing showing is my
most recent smear test. But quite handy to know those results were negative.

off · 08/09/2023 05:01

Must drive you nuts Candles.

larlypops · 08/09/2023 05:11

I went in with a suspected broken leg actually torn knee ligament but they gave me an overdose of meds and I had a bad reaction where I couldn’t stand and my blood pressure kept dropping, faint etc so my notes say I went in with a funny turn not that I damaged my knee at all, no mention of x ray, crutches given. When I asked for a physio referral as it’d been months and I was still getting pain in my knee they had no record of my trip to hospital regarding that, my notes were all about the “funny turn”.

CopperLion · 08/09/2023 05:47

I’ve also seen mine on the app and there are multiple mistakes, including indicating that the mild eating disorder I had in my late teens/early twenties went on for 10 years (it was more like 3). I would like it corrected because it can have an impact in certain professional settings. Does anyone know how I would go about it and whether it is worth the effort? Apologies that I haven’t read the whole thread.

CopperLion · 08/09/2023 05:50

I’m also quite sympathetic to NHS staff. I imagine expectations are way too ridiculous for this kind of thing to take priority, though equally think it could matter that the records are correct. I wish I could just log into the app and correct my own!

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