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Original poster

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:
womanone · 07/09/2023 04:18

Furious at PP suggesting errors on medical records are minor trivia and we should wait to correct them.

I am currently very ill partly because when I went to my GP earlier this year with a flare up of a long-standing condition I've had for over 25 years, my medical records were missing, and the GP in effect didn't believe I had the condition, and treated me as though I was just making it up, so it took weeks to be able to access treatment, by which time my health had gone downhill hugely.

Bizarrely, nearly my whole medical record was missing, when I checked it, BUT a single episode of depression I suffered from for a few weeks, over 30 years ago, WAS on my record (mislabelled as anxiety/phobia...er, no). More than that, rather than being labelled as 'past', or 'closed', that single episode of depression was labelled as 'active', even though it was over 30 years ago.

As a result of this, the (sexist, ageist young male) GP I saw this year decided I was just a neurotic fantasist, as opposed to someone with a long history of a recognised physical condition, which there should have been ample evidence of hospital scans etc etc on my medical records over many years, and refused to put me forward for proper treatment, for many weeks.

I'm now on very strong medication with potentially very serious side effects as a result of these errors in my records

Don't give me this crap that these errors don't matter. They matter. I would advise everyone to check their medical records before they get sick, so that when they need help, they are believed, and their real health history can be read by clinicians dealing with their treatment.

Patients are not there to ease the pressure on the NHS. The NHS is there to treat patients. Anyone who doesn't get that, should not be working for the NHS. 😡

womanone · 07/09/2023 04:21

NHSKNOW · 07/09/2023 03:13

From October 31st GP practices are required by contract to give patients access to their prospective records. This means any new information from a certain date. Practice have the option for this to be done in bulk but they are able to miss this date and do it manually. There is no such stipulation for historical records. If you wish to have historical access you will still need to ask the practice for this. They do have a duty to provide this information to you unless there are specific safeguarding issues. As for older records on your access, for a long time medical records were in paper form. When everything started being recorded electronically. In order to get the paper records on to the electronic record this all needed to be input manually so a lot of practices put the bare minimum on there to make sure a record was saved. A lot of practice just put a year for the problem/consultation which is understandable, if you have a practice with 20000+ patients it’s a lot of work to add the historical paper notes for each patient.
With regards to incorrect notes being on your record you need to raise this issue on the practice. If it is found to be an entry that belongs to someone else they are allowed to get the entry removed from your record. But it is not a simple process… your medical record is a legal document so removing a record is a big deal

Just to clarify:
Anyone can request online access to their records, both historical and prospective.

The practice is not allowed to refuse unless there are specific reasons ef safeguarding and they have to be able to explain this to you

From October 31st 2023 every patient should have prospective access to their records. If you don’t you can request it

Lastly, practice staff are extremely busy and do a lot more than just sitting answering telephones. They are human, they may make mistakes. However, always been kind, so not take your anger or frustration out on them, They don’t make the practices policies or rules, they are just doing their job

Is there a time limit within which surgeries need to come back to patients on errors, or queries re records, do you know, @NNHSKNOW ? My surgery seems to be very slow, so would be good to know if there are any official targets?

PeopleAreWeird · 07/09/2023 04:56

On mine i was apparently diagnosed with a lung clot twice, one only last week

And my non cancerous brain tumour is cancer apparently

MikeRafone · 07/09/2023 05:00

I delved into mine and found an operation back in 2002. Thing is I was in Denmark and not in the hospital

asked them to remove it as it would affect any holiday insurance and life

unkownone · 07/09/2023 05:24

Found on my eldests records when the dr said her iron levels were 'low' but fine. It actually it was like 4 and recommended further investigation and scans.

WiddlinDiddlin · 07/09/2023 05:44

Ah can't see my records... this looks like its NOT the way to find out what the hell I was being investigated for in the 1990s then... (i recall it involved a lot of me walking up and down in a tshirt and knickers whilst various people watched me walk, and then made me do frog legs and looked at my hips and told my mother she should have done something when I was tiny... and then she stopped taking me to appointments and said it was fine. I now suspect it wasn't.).

I want to know how/why both lumbar and cervical stenosis were missed/ignored, the spurs were pointed out to me on an xray in 1998... the radiographer was astonished that a (then) 28 year old had the spine of an 80 year old. There again, the heart xray i was actually in for showing an enlarged heart was waved a way by the then GP and I was laughed at when I asked if I could have heart failure (yes. Yes I could. I did. I do.)

In other news... how come I can't walk. Ho hum. It's a frigging mystery.

countvoncount · 07/09/2023 06:27

I'm shocked at how common this is!
Just before covid hit, I took part in a clinical trial, and had to give access to my records.
On my next visit they said they had to stop the trial due to my brain injury, alcoholism and drug use!!!!!!!
(None true)
I went to the surgery and spoke with the manager, was very much brushed off to begin with, until I mentioned that I am employed by cqc as a compliance officer.
All hell broke loose, my records were amended, an investigation found that this occurred when transitioning from paper to electronic records, and I was given an apology.
Case closed.
Genuinely thought this was a one off!

fairyfluf · 07/09/2023 06:32

porridgecake · 06/09/2023 22:52

"Yup, this. And please don't book an appointment with the GP, say it's personal to then discuss something on your record from 1998 that you don't agree with.
Thanks!"

My surgery will not even discuss this with me unless I book a face to face appointment. I don't want to waste the GP's time, but I am in a standoff with my travel insurers and they want lots of extra money to cover a condition I do not have. If I want insurance cover I have to pretend the records are accurate and pay up. If I end up in hospital abroad, they will think I have a condition I don't have.
These are not trivial errors.

I totally agree. While I get that GPs are busy these mistakes are having real impacts on people's lives.

fairyfluf · 07/09/2023 06:38

JMAngel1 · 07/09/2023 04:05

But do we really think GP practices have the capacity to investigate and action any necessary amendments? Surely actual standards of care would fall when they they haven’t got much further to fall!

If someone applies for life insurance they could be refused because of one of these errors. Or someone could die.

Ollifer · 07/09/2023 06:44

I have bipolar disorder on my records...I do not and never have had bipolar, but I can't get it removed !!! It is important - I've got a few physical conditions and the hospital staff have brought it up and asked what medication I'm on. I hate it!

waltzingparrot · 07/09/2023 07:09

How on earth are they going to be able to put these mistakes on to the correct patients' file?

Mine refer to me being in a road traffic accident, which I never have been, thankfully. Presumably, someone at my surgery was in a RTA and that information is not on their record. How would they know who's?

purpleme12 · 07/09/2023 07:26

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

This is all really really worrying

porridgecake · 07/09/2023 08:12

This thread is really worrying. How many people must there be who have no idea how inaccurate their medical records are?

Gall10 · 07/09/2023 08:28

My gp insists I’ve been treated for endometriosis…..I most certainly havnt.
more worrying is the fact I’m allergic to penicillin but it’s not recorded despite me telling them every visit.

AmandaHoldensLips · 07/09/2023 08:34

I caught a glimpse of my medical records and they are so wrong it's unbelievable. Successive completely useless IT systems that the government wasted billions on have contributed to the whole not-fit-for-purpose shit show.

Herecomesdehotstepper · 07/09/2023 10:00

Some years ago, I had to get my complete medical records. Turns out nearly half my life is missing and what is left would be a contender for the Booker Prize.

Failure to code a serious condition led to a locum prescribing medication that could have killed me.

A serious mental health condition is in my notes as 'stress'.

I have complained, but they say they can't remove the entry that describes me as 'mildly frail'. Apparently I am mildly frail because I have had a fall (tripped over a raised paving slab - complete accident) and because I have glaucoma ( I don't have glaucoma). The definition of mildly frail is 'people who are slowing up in older age and may need help with personal activities of daily living such as finances, shopping and transportation.' So not someone who is fit, active, working etc etc

REBM · 07/09/2023 10:19

GP told the DWP about twenty years ago I had some condition which meant I had growths all over my brain.... I have a neurological condition but not that! I later had neuro surgery and a resection of the brain in an area away from my local nhs trust.... ended up in A&E who sent me for a CT scan because of my symptoms but said all was clear. When I spoke to my specialist a few weeks later he said there was nothing on my record about the surgery I had had..... so A&E must have seen a missing part of my brain on my CT scan and just thought "that's ok"?!!! Record keeping in the NHS amazes me sometimes

higlosspolish · 07/09/2023 10:29

I complained about a GP who described me as "delusional" because I am "unaware how unusual it is to breast feed a baby". He used the term "free unfettered access to her breasts". This was actually in a letter of referral when I asked for an ADHD assessment (there is family history) so it was intended to be seen by other professionals - none of whom raised concerns or informed me.

I believe this is sexual harassment as it violated my dignity, created a hostile environment for me and will impact future medical treatment.

Complaint not upheld by practice or ombudsman or by information commissioner's office. I was able to add a note of amendment but I can never have this erased from record. When I attended the practice to see my records being amended I was treated aggressively, with contempt and anger.

Incredibly upsetting experience 🥵

Thelnebriati · 07/09/2023 10:37

Some of these are really awful.They've lost half my records including a head injury (a fracture), an operation, physio which I never completed because my parents couldn't be bothered to take me, and the only evidence I had that I was subjected to CSA and had SS involvement.I didn't even think to check for stuff which shouldn't be on there.

mindutopia · 07/09/2023 10:54

Did you see the GP/have a smear/etc just prior to this? You would obviously only get referred for a legit reason if you had come in to the surgery and been examined or complained of significant symptoms. I think you would know that this happened and there was a need for a referral. They don't just refer you for no reason without having spoken to and examined you. Did you have a coil inserted or have a smear that resulted in a colposcopy? It's the sort of thing that might be easily forgotten because it's quite a routine check up, but it may have been noted down as an urgent referral for some reason.

That said, I would take what's on the NHS app with a grain of salt. I was looking through mine yesterday and I have 'diagnosed conditions' that I have definitely not been 'diagnosed' with. I went on antidepressants for a period of time due to a bereavement, but I have been noted as having 'depressive disorder'. I don't have depression. I was just having a tough time that was short lived and I only took the antidepressants for a year before I weaned myself off them.

I also have down a diagnosis for a genetic condition that I was screened for. I don't actually have the condition, but I do have 1 (but not the necessary 2) genetic markers for it. I think it's simply the way it's been noted in the file so that I can make the case to have my children screened - GP said they should be screened at 18 to see if they have both markers. I think there is no easy way to note that in the system otherwise.

IMustDoMoreExercise · 07/09/2023 10:56

rileynexttime · 06/09/2023 21:43

I guess incorrect info doesnt matter too much .I dont think doctors ever look at ones records do they ? IME they always rely on me answering questions re allergies ,operations etc .

It might if you have at travel or life insurance claim.

momymu · 07/09/2023 11:04

Have you actually had some tests/ investigations done around that time? I'm writing this as I have had similar recently: went to GP complaining about something 'stuck' in my throat, and, after examination, was told to wait for a referral letter for a throat ultrasound and gastroenterology. Received an appointment within 2 weeks and only then saw on my GP App 'suspected throat cancer'. I think GP put this to get me faster appointment. She did not mention this suspicion to me at all.
I'm fine, btw 🤞

higlosspolish · 07/09/2023 11:10

GDPR does not cover medical opinions and nothing can be erased from medical notes. I requested redaction of the phrase "free unfettered access to her breasts" as I do understand that the consultation took place and must stay on file, but absolutely no way would this happen.

I don't know what happens if, for example, another patient's issues are wrongly entered into someone's notes

MikeRafone · 07/09/2023 15:03

I don't know what happens if, for example, another patient's issues are wrongly entered into someone's notes

I wrote to my now gp practice after phoning, they removed the incorrect note from mine

EasternStandard · 07/09/2023 15:09

higlosspolish · 07/09/2023 10:29

I complained about a GP who described me as "delusional" because I am "unaware how unusual it is to breast feed a baby". He used the term "free unfettered access to her breasts". This was actually in a letter of referral when I asked for an ADHD assessment (there is family history) so it was intended to be seen by other professionals - none of whom raised concerns or informed me.

I believe this is sexual harassment as it violated my dignity, created a hostile environment for me and will impact future medical treatment.

Complaint not upheld by practice or ombudsman or by information commissioner's office. I was able to add a note of amendment but I can never have this erased from record. When I attended the practice to see my records being amended I was treated aggressively, with contempt and anger.

Incredibly upsetting experience 🥵

Wtf that’s awful

What kind of writing is that. Hideous way to speak about you