Horrific errors in NHS notes

[Dragon888]

I tried to get a full set of my nhs notes from birth to current date including all letters only to be given a heavily redacted copy with some horrific errors.

I am teetotal and a buddhist but an NHS GP wrote that I am a "heavy drinker"!!!!!!!!!!!! (I would note that a full blood count had revealed ZERO percent alcohol in my blood!)

Also my child was born via caesarean section and was not breathing at birth it was traumatic (but my child is healthy now) born in 2001 so an adult now but a few years ago when my child was 17yrs old someone had accessed my nhs notes and changed it to "completely normal birth in completely normal case".

There are many more AWFUL errors too.

GPs keep saying "oh, you have a sensitivity to morphine, dont you"
No I am ok with morphine, I have had it twice due to operations and not had any bad side effects. I STILL have no answer as to why they keep stating inaccuracies. My response is always no I don't why are you saying that? they end the conversation and end the phonecall or end the gp appointment

Other GPs had clearly followed the incorrect narrative and the reason that I had been requesting my nhs notes for the last six years only to be repeatedly ignored and or given heavily redacted notes is due to the bizarre way that gps have been behaving towards me.

Stating inaccuracies and being rude to me.

Before all of this I was an nhs volunteer - I still have the badge. My paid employment was at a dementia care home. I deserve a LOT better than this.

According to the GDPR we are supposed to have the legal right to view our FULL nhs notes unless a valid reason is provided for the redaction (which would be VERY rare, even dementia patients are usually allowed to see things). We are supposed to be able to have FACTUAL inaccuracies deleted and if we disagree with a gps comment a note should be added.

I complained to the GP surgery who totally mugged me off and told me that since it was added by a previous practice there was nothing that they could do about it! - which is NOT true, the GP practice who holds your nhs notes are the ones who are responsible for the keeping of accurate notes; then I contacted the ICO who have not been helpful at all and so I turned to the local MPs office for support and the complaint is now with the parliamentary health ombudsman

I am now refusing to see NHS GPs due to what they are doing to me. unless they address my complaints regarding my nhs notes.
This of course will have long term health implications but no worse than the GPs working on an incorrect narrative.

If anyone has sensible suggestions please let me know

My Mum had a diagnosis of Huntington’s recorded on her medical record decades ago. Only one GP mentioned it, years after it was documented, which raises the question of why it was recorded in the first place (as she clearly doesn’t have it) and why nobody bothered to ask about such a serious diagnosis for all of those years. It’s extremely concerning that nobody has questioned it again.

What annoys me is the online notes are incomplete. No mention of endometrosis which I was diagnosed with five years ago, but it says I had a tetanus injection in 2001. Then sometimes it just says "Problem" or"Consultation" without giving any details.

Also I have lost 15kg in the last few years, yet if you look in my notes my last weight record is 88kg. I was weighed in May by the practice nurse and 73kg but this was not recorded.

Then GPs don't "see" anyone these days, it's all phone appointments. So I think it's more important than ever that notes are accurate.

Mine have medication errors. Apparently I'm on the implant AND have a coil in. And the last implant has the wrong date . Plus Lidocaine injections that never happened.

@madisonbridges

I once did temporary work at a national insurance group. To find the correct policies, you typed in certain info and it would bring up all likely matches (long time ago - old systems). There was then a button to merge files if you found different policies held by the same person. After a while it was uncovered that policies from different people, but who shared the same name and same birth date, were being merged as the same person. (Not that I ever did that. 🙄 ) It caused havoc.

Maybe that's what has happened here and 2 people's records have been merged and that's where your false information has come from? Maybe your gp practice could go back to your original gp's and see if something like this has happened. They didn't just make up that information and its not just one wrong piece of data that got entered accidentally.

That sounds really feasible.

For many years, I lived in the same borough as someone with the same first and family names and same middle initial. We were also born in the same year.

My medical records at hospital twice got mixed up with hers, and we once shared the same dentist (came to light when they tried to charge me for a missed appointment). Some years later, we both worked at the same council, and were always getting muddled up. Not by anyone who'd actually seen us though - she was black and I was white!

When at uni, I claimed benefits in the holidays. I got accused of signing on for someone else once, because they were comparing my signature with that of someone else with the same names and middle initial. I bet it was her!

The odd thing is that while our surname is common, our first name is fairly uncommon. The odds of this happening must be fairly slim, especially with the same year of birth.

My DD’s childhood vaccinations weren’t recorded, which affected her university place, as she needed proof that she’d had the relevant ones from the GP’s records.

This happened to me several times as a child, because there were two of us living in the same road with the same name! It was never anything too serious, but I'd get letters for the anaphylaxis clinic when she was the one with the allergies, things like that.

I was told 20 years ago after a minor gynae op that I had severe endometriosis and the right ovary was missing. The consultant said I would be highly unlikely to conceive naturally and should make an appointment at his private ivf clinic….

I tried to engage with him and say that I had never had a single issue with periods - light regular and pain free - so the severe endometriosis was a shock - he said he didn’t know why I was shocked as it’s very common

I then said I was even more shocked about the missing ovary and where might it have gone - he said I’d been born without it - but I reminded him I’d had emergency surgery six months earlier to repair a ruptured blood vessel on the right ovary. Indeed that’s what the minor surgery that day was in relation to. I asked him to check my records but he said he was busy and referred me again to a private ivf appointment

I called my GP a day or two later, who laughed, said he’s known for being arrogant and said wait for the report from consultant to GP and he’d reply. After the GP reply the consultant wrote to me, apologised and said he’d mixed up two cases that day - it was someone else he was talking about! Again offered a private appointment - this time free of charge.

I went along and explained to him that the issue wasn’t his mistake - we can all make a mistake - it was his refusal to listen when I spoke - if he had he would have had every opportunity to check and correct.

I still think about the poor woman who got my good news that day on her fertility instead of her own bad news

There is someone else at my GP surgery with same very common first and last names but all other details very different. On numerous occasions I have been in a consultation and they have referred to conditions and medications that are not mine. When I point this out they run out, have an urgent whispered conversation with the receptionist then come back and are suddenly seeing the correct information.

Have also many times been sent off to the hospital for various tests and when I hand over the printed test form from the GP the DOB doesn't match as it has been printed from the wrong records.

The worst, though, was when my solicitor requested a full set of my medical notes from the GP. After big delays and lots of chasing they finally sent through a fully comprehensive set of all notes from birth to the present for...the wrong woman! My solicitor was appalled and reported it as a major incident to the ICO.

Also had routine weight records from a family planning clinic wrongly recorded which led to worried questions about why I had put on so much weight since the last appointment. My current weight was 10 st. I was a bit confused and said well possibly a couple of pounds. Apparently the previous recorded weight was 7st! They refused to believe that record was a mistake and wrote suspected eating disorder on my notes.

@Dragon888

I tried to get a full set of my nhs notes from birth to current date including all letters only to be given a heavily redacted copy with some horrific errors.

I am teetotal and a buddhist but an NHS GP wrote that I am a "heavy drinker"!!!!!!!!!!!! (I would note that a full blood count had revealed ZERO percent alcohol in my blood!)

Also my child was born via caesarean section and was not breathing at birth it was traumatic (but my child is healthy now) born in 2001 so an adult now but a few years ago when my child was 17yrs old someone had accessed my nhs notes and changed it to "completely normal birth in completely normal case".

There are many more AWFUL errors too.

GPs keep saying "oh, you have a sensitivity to morphine, dont you"
No I am ok with morphine, I have had it twice due to operations and not had any bad side effects. I STILL have no answer as to why they keep stating inaccuracies. My response is always no I don't why are you saying that? they end the conversation and end the phonecall or end the gp appointment

Other GPs had clearly followed the incorrect narrative and the reason that I had been requesting my nhs notes for the last six years only to be repeatedly ignored and or given heavily redacted notes is due to the bizarre way that gps have been behaving towards me.

Stating inaccuracies and being rude to me.

Before all of this I was an nhs volunteer - I still have the badge. My paid employment was at a dementia care home. I deserve a LOT better than this.

According to the GDPR we are supposed to have the legal right to view our FULL nhs notes unless a valid reason is provided for the redaction (which would be VERY rare, even dementia patients are usually allowed to see things). We are supposed to be able to have FACTUAL inaccuracies deleted and if we disagree with a gps comment a note should be added.

I complained to the GP surgery who totally mugged me off and told me that since it was added by a previous practice there was nothing that they could do about it! - which is NOT true, the GP practice who holds your nhs notes are the ones who are responsible for the keeping of accurate notes; then I contacted the ICO who have not been helpful at all and so I turned to the local MPs office for support and the complaint is now with the parliamentary health ombudsman

I am now refusing to see NHS GPs due to what they are doing to me. unless they address my complaints regarding my nhs notes.
This of course will have long term health implications but no worse than the GPs working on an incorrect narrative.

If anyone has sensible suggestions please let me know

I'm with you, I really am. However just because you've worked for the NHS and 'still have the badge' and worked in a Dementia care home, doesn't make you any MORE entitled to accurate notes than anyone else! Everybody in the UK is entitled to accurate medical notes. Even ~shock horror~ non-NHS workers 😱

if in the future I had a situation where adequate pain relief were required and they thought that I couldnt have it then i would be left in pain?

No, you would be given an alternative.

OP, I have a severe reaction to morphine. Causes horrific hallucinations for weeks afterwards. I had fentanyl instead after my last surgery and had no problems at all. So don't worry there are good alternatives to morphine.

Anyone down playing the significance of this, not only does it impact her health care but what if she needed an insurance pay out in future?

Legal documents CAN and must be rectified, what will probably happen is they will be annotated to state what the original (or change) was (is) as an audit trail, rather than completely deleted to remove the error, but they should be corrected.

OP, the fact that they have addresses down that you have never lived at strongly suggests that your notes have been merged with someone else's.

What can also happen is that someone else's individual notes or letters can be accidentally placed in your file.

The GP surgery need to double check every letter and note and make sure it has your correct name, dob, NHS number and an address you have lived at.

Providing them with all previous addresses will help

I had a truly horrendous diagnosis written in my notes which was completely bonkers and could have impacted in my care v significantly. You do have a right to inaccurate medical notes being redacted. It it’s the doctors opinion it’s harder. In my case it was a clear cut bonkers mistake but still took a long time to get sorted. My notes had to be reviewed clinically and then they removed it. I’m afraid the IPO are taking months to process anything so I’d keep pushing with your GP.

[quote UniversalAunt]@CoedenNadolig,

‘ My NHS records had me down as male, and apparently they had been like this for like 24 years, wasn't till I was pregnant at 24 did the midwife notice… ’

Oh get you, so ahead of the curve [/quote]
Haha yeah I know what you mean.

Thing is I'd also had a lap and dye to check my tubes a few years prior and the consultant gynaecologist hadn't noticed the "male" on my notes either 🤣 I obviously hd the right plumbing.

It's clear that the poor overtired midwife or something at the time of my birth simply clicked the wrong button or something. Mistakes happen. Me and the midwife had a good giggle about it.

@CoedenNadolig , they probably assumed that you were a trans man who had not had any surgery or hormones and had had the sex marker on your files changed because of that. There is literally no way for them to distinguish between that and someone given a male sex marker at birth.