Confused: Just got a copy of gp letter with... - LUPUS UK

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weathervane profile image
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Just got a copy of gp letter with '' significant previous medical history '' there are alot of date inaccuracies and wrong information. For example sicca - Sjögren's syndrome 2014 ? I was only diagnosed 18 mths ago , diabetic clinic 2014 , never happened as not diabetic. How can this happen ? The letter is not significant as it is a letter to indicate where scan is needed but still confused as to how , when everything is on computer, this can happen??

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weathervane profile image
weathervane
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50 Replies

In my experience it can all too easily happen I'm afraid W. I had to make a formal complaint to the practice manager about 18 months ago when I was relocating and nice GP gave me a copy page of my most recent notes - where some awful locum/part timer had written that I was a hypochondriac who needed referring for online CBT to manage my issues. This was from the woman who binned my stool sample, failed to examine my abdomen as requested by nurse on entry below and called me a liar to my face and on notes - saying there was no such nurse referral. Unforgivable - and if the senior GP hadn't handed me a copy of this entry I'd never have known and next practice would have thought me a hypochondriac with no rheumatic disease or IBS-c?! I did get an apology after my letter of complaint but it's made me very nervous of ever mentioning my abdominal issues now. And I tend to go to GP with jolly demeanor no matter how rubbish I feel - and hardly ever tell the truth about pain. All because of one horrid inididual. Mind I've seen a few of her ilk over the decades sadly!

Fact wise - according to my GP notes in a patient summary- I've had 2 sons rather than 3 and a chest infection/ flu rather than pneumonia plus many other discrepancies. However my hospital notes were the worst of all with UTI rather than Pancreatitis, post op wound complications rather than severe Sepsis, Vasculitis GCA (not!) and worst of all from a skin reaction a few years ago - Scurvy! I have had all these set straight now when I saw rheumy registrar and asked him to amend. What happens is that it's just like Chinese whispers and a busy GP's secretary or the GP themselves - quickly highlights the relevant info and the haste can lead to them picking up things or worse - adding in things to make themselves or the practice look more thorough than they actually are! So a passing comment saying "patient has raised blood glucose - check for possible diabetes" might then be taken as "attended Diabetes clinic by a GP to cover their back?

Easy enough to phone GP's admin and complain and ask for this to be removed. They may say they can't but if they inserted the innacuracy themselves then they can remove it!! X

Lupiknits profile image
Lupiknits in reply to

I agree with twitchy. Get on to your GP practice straightaway. This is an axample of professional failure and such things can be dangerous, let alone infuriating!

elizabethanera profile image
elizabethanera in reply to

How awful for you.too true your last sentence is! I had something similar.

weathervane profile image
weathervane

It is weird as there are things in letter that i never had like an arthroscopy and a drooping eyelid ??? Its as if they have combined me with another patient - maybe they didn't make notes immediately after app and mixed me up with previous patient. Not good!

EOLHPC profile image
EOLHPC in reply toweathervane

👍👍👍👍 40 years of loads of medical reports makes me think this mix up between patient cases happens A LOT more often than we can EVEN imagine! EEEEEEEEEEEEEEEEEK. GRRRRRRRRRRRRR

🍀😘🍀😘 coco

Bruson234 profile image
Bruson234 in reply toweathervane

I agree. I once worked at a walking clinic and saw staff members do that. Not on purpose, they were just rushing all the time.

weathervane profile image
weathervane

Its frightening 😮😯😦

PMRpro profile image
PMRpro

Oh so easily!!! The doctor dictates the letter at the end of your appointment (if you are lucky) or the end of clinic. By which time they may have got things mixed up - they are human after all, even if they don't think so. If stuff is on a computer now it may have been entered from paper notes - so at least 2 lots of potential inaccuracy.

I would face up the doctor with a copy of the letter annotated with the corrections. If they don't help - see the practice manager. And if that gets you nowhere, file an official complaint. If it is the hospital at fault - PALS.

My mother turned up at her practice once, she'd been a patient for years and it was a pretty decent one. They couldn't find the notes. A search led to "You're dead. The notes have been sent back." To be fair, they did realise the stupidity of this statement. It turned out there were 2 Margaret Irene Murdochs with very similar birth dates. Which underlines the importance of checking addresses or other unique identifiers at all times. Two MIMs, born about the same date/time - but only one would have lived at a particular address.

elizabethanera profile image
elizabethanera in reply toPMRpro

That is just dreadful. Totally apalling

elizabethanera profile image
elizabethanera in reply toPMRpro

That is human error, not computer.i know how the system works. Hope she had a profuse apology.

Silvergilt profile image
Silvergilt

I've had other patients' notes appear in my file, listing me as having completely different conditions and being on different medications entirely, which had the consultant in A&E believing I was a liar and hypochondriac as well. Really not good :/ I hope you manage to get it sorted out. Our lives literally rely upon our notes being accurate.

elizabethanera profile image
elizabethanera in reply toSilvergilt

Oh , I am speechless.

weathervane profile image
weathervane

I am shocked !! I cannot believe that has happened to us all - as you said SW our lives do depend on the notes being accurate. The thing that upsets me the most is that it was the senior gp i spoke to who is also senior in the school of medicine . If anyone should have got it right it should have been him !!!! I am in a dilemma as i have great respect for him and would be loath to complain 🤔

PMRpro profile image
PMRpro in reply toweathervane

It may not be him to blame - he may be as much a victim as you. Whoever - it needs flagging up so if there is a procedural mess it can be sorted out.

Once upon a time clerical staff in the NHS were as conscientious as the nursing and medical staff. That sort of dedication has been eroded - "it's only filing". Or - and I've experienced this one myself and it ended up with me in a diabetic clinic instead of someone else when I should have been in the urology clinic - "It's near enough..." when the name called was nearly, but not quite, mine. Elaine instead of Eileen first and just "Mrs X" the second time instead of "Mrs Eileen X". So just where the in-clinic parameters of weight etc were entered is a mystery....

weathervane profile image
weathervane

I am too trusting . I like to believe people are careful, particularly when someones life could be put at risk - im obviously wrong. Another bubble burst ☹️

PMRpro profile image
PMRpro in reply toweathervane

Sorry - think what it is like for those of us who worked in the NHS and now look at tasks that really are important are hived off to private companies who pay minimum wage and are not subject to the checks and controls NHS staff are!

There is a disconnect between the patients and the paperwork - and without seeing both aspects it does become "just filing" or "just a blood sample". I hope you never have to experience the privatised ambulance services...

And just don't get me started on PFI, especially where hotel services and maintenance as well as the buildings are rented out. One damaged electric socket to be replaced: cost under PFI 8 years ago was IRO £480 after several weeks wait which then came out of the diagnostic department's patient services budget. Before that you rang the in-house sparky who was there in a day or so at most and the hospital management covered the cost.

That's part of why the NHS is in a mess...

weathervane profile image
weathervane in reply toPMRpro

I also worked in NHS 25 year , I couldn't work in it now even if i was fit , things have changed so much .

PMRpro profile image
PMRpro in reply toweathervane

I wouldn't WANT to - but both daughters are still there. One's spouse has just left the ambo service - couldn't take it any more. Seems happier...

elizabethanera profile image
elizabethanera in reply toPMRpro

Of course they feel better, and such needed people ambulance are invaluable!

weathervane profile image
weathervane

I am hoping these inaccuracies in the letter are not also in my actual medical notes . Maybe its the hackers at work again LOL

wsjkcj1 profile image
wsjkcj1

I've not found many doctors offices to be too accurate in record keeping. Think they fill in blanks with any information just to complete their paperwork. What type of scan are you having?

weathervane profile image
weathervane in reply towsjkcj1

Hi there ! I must have alot of blanks 😀 Having scan of lumbar spine and hips as have sacroiliac and/or disc problems. How's things with you at the moment??

wsjkcj1 profile image
wsjkcj1

maybe the diabetic clinic was an endocrinologist apt for thyroid check? My chart seems to leave everything out. My Doc always ask when my last period was and I have to remind I had a hysterectomy 18 years ago. LOL I'm doing well right now (knock on wood) thyroid has been behaving and SS just giving normal dryness at the moment. How are you? Did your second injection help? How was the holiday?

weathervane profile image
weathervane in reply towsjkcj1

Only got the one injection, rheumy not sure that sacroiliac is the problem, that's why am having mri on Monday. Heading on holiday on Friday so good to have this under way as getting another rituximab infusion as soon as get back. Its always all go with this condition, isnt it !! Glad to hear you are keeping well , look after yourself xx

wsjkcj1 profile image
wsjkcj1 in reply toweathervane

Oh that's right. scheduled it when you returned. Well, I hope the scan gets you some answers and it's treatable! Also hope you have a relaxing holiday and feel your best for it. :) Let us know how scan goes.

weathervane profile image
weathervane in reply towsjkcj1

Thank you , looking forward to getting some heat in my bones ! Will let you know about scan , take care , best wishes xx

elizabethanera profile image
elizabethanera in reply toweathervane

Enjoy your holiday

misty14 profile image
misty14 in reply toweathervane

Good luck weathervane for your MRI on Monday. X

weathervane profile image
weathervane in reply tomisty14

Thanks misty xx

SjogiBear profile image
SjogiBear

Oh my goodness! This is awful and seems to be the norm rather than the exception. I have noticed over the past 5 years that my medical history on the letter heading seems to change each time - on the last letter it said I had RA which I don't. I have a feeling that it may be a bit like Chinese Whispers as well so as things move from one doctor to another they change ever so slightly each time.

I know at one point all the doctors' letters were being sent out to India to be typed up before being returned and sent out - not sure if this is still happening but is obviously something to do with 'cost saving'. It is totally ludicrous what is happening.

I really feel that we need some kind of movement which is non-political driven by the people of this country to get the powers that be to invest properly in the NHS - whatever that may take. Pretty much everyone feels strongly that we need to protect our NHS and it's falling apart around our ears. I feel so powerless but feel we the people have to do something before it's all too late and we end up with privatisation by the back door.

I've not asked to have a copy of all my notes - I think I might be shocked!

weathervane profile image
weathervane in reply toSjogiBear

It would be interesting to have a pole to see how many people have had the same experience as i have been quite taken aback by how many people have had inaccuracies in letters and notes 🤔

Minnskimoo profile image
Minnskimoo

It's very worrying reading through these posts - I can't believe some of the discrepancies.

I had B12 tested - recorded in my notes as one figure and in just my blood results notes (my online access has a drop down menu to choose from) it is a totally different figure! Both are low however but the difference between them quite high! Which does one choose? I expect not low enough to warrant treatment so basically it really doesn't matter! 😡

weathervane profile image
weathervane

It could have mattered though , and it does matter at same time . We need to be vigilant ourselves by the looks of things ! Maybe we should be getting copies of our medical notes as well ?

Minnskimoo profile image
Minnskimoo in reply toweathervane

Yes, it most certainly could! 😏

elizabethanera profile image
elizabethanera

Huh, Doctors would never allow that!!!!! They do not have to tell or give anything they consider would be considered,in their opinion , adverse for patient knowledge . Bah Humbug !!!!!!GP s know a little about a lot. Consultants know a lot about a little.

Had to private to get anywhere atall, I was fortunate. From stress......... I have severe diverticulitis, fibromyalgia, possible sjgoerns/lupus. 20+years the last three,have been a nightmare.finally went private Jan 2017, still have 3 investigation s going on. My GP wrote on my referral " has a florid past medical history". And ended letter by asking if it all was psychological? I was mortified! My consultant was not happy either. He is a rheumatologist, sent to an immunologist and gastroenterologist , dermatologist, and my dentist sent me to oral medicine. Four of which cost a lot of money and the tests much more.! I feel cheated of my life the past 3 years and made to feel a nusiance and stupid.i totally understand how you feel. Thank goodness for the rare good to in your case.inactually in worked in NHs for 16 years,pen pushing but dealing with doctors and public.i would be ashamed to be part of NHs admin now!!lllllll well done you. When all tests done etc, I will be changing surgery and intend to complain in a forthright manner. Take care and well done. Good luck and health too.

elizabethanera profile image
elizabethanera in reply toelizabethanera

Hi again, forgot to say GP gave medication to hosp and private hosp. Wot a surprise!!!!!!!!!!!!!

elizabethanera profile image
elizabethanera

Sorry that was totally wrong medication data given to both hosps

weathervane profile image
weathervane

I know how you feel elizabeth ! I was unwell and in alot of pain for quite a while and i was at point when thought it was all in my head . My saliva gland and lymph nodes all became swollen and i felt worse so went privately saw surgeon as thought had breast lump , then endocrinologist, dental surgeon , immunologist until finally a rheumatologist who diagnosed sjogrens and it all clicked . This seems to be a common story for alot of us . I have just told my husband about it and he is very annoyed and want the errors sorted out . Its not in my nature but this time i do need to say something . I hope you get sorted with a new surgery , i don't want to chsnge mine as they are usually good but will have to think seriously about what is best . Best wishes to you and good luck xx🌸🌸

elizabethanera profile image
elizabethanera in reply toweathervane

Many thanks, have been with current surgery 30+ years. All new or newish GPS. Totally arrogant and uninterested.all happened quickly,last GPS upped and went.... Suddenly. Pushed?????

elizabethanera profile image
elizabethanera in reply toweathervane

Hi, forgot to say very best wishes to you. Think carefully about what you gonna say, and be upbeat when you do . Do not give them the satisfaction of appearing too annoyed.bsupercillious "know it alls .xx

elizabethanera profile image
elizabethanera

Re your computer comment, they care only as good as the data they are fed

elizabethanera profile image
elizabethanera

Stupid tablet, computers are only as good as the data they are given

weathervane profile image
weathervane in reply toelizabethanera

Thanks for advise Elizabeth , i hope all works out for you as well xx

Cann profile image
Cann

Tell us about it. When I got my records I was livid that there were so many inaccuracies; now I just get on with it and accept the incompetence of a bad system. There are so many of us who have found this that it is unlikely to change!

Cann profile image
Cann

PS I made a complaint and now I find my treatment is restricted - complaining may help others, but from my experience it certainly hasn't helped me!

weathervane profile image
weathervane in reply toCann

Thats what worries me Cann , i need to pick the right person to talk to in the practice . I get on well with the staff as im in and out so often and i dont want to destroy that relationship. I hope you get your situation sorted out xx

Bubs88 profile image
Bubs88

I recently received a letter to my Go. It was basically a summary of my appointment with the Rheumatologist. There were lots of things that I didnt agree with. So I phone the Health center where I had my appointment and the Rheumy asked me to write a letter to him, detailing the inaccuracies.

weathervane profile image
weathervane

That seems like a satisfactory response! I am to take this letter with the inaccuracies to a clinic for an mri scan , i dont think the details will make much of a difference . However - if i had been going for an appointment for something else such as surgery these inaccuracies could have been serious as there were several procedures listed that i did not have .

Bruson234 profile image
Bruson234

If I were you, I would contact my PG as soon as po

If I were you, I would contact my PG and complain about this mess! Evidently that clinic or doctor is not keeping track of patients medical records. This is serious. She could have been sending you meds for diabetes or something that you do not need. In this day and age we need to be our own medical advocates if we want to stay alive.

weathervane profile image
weathervane in reply toBruson234

Hi bruson , it does have the potential for some very serious errors with meds.

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