Doctor's Lies: I recently accessed my medical... - LUPUS UK

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Doctor's Lies

shareasmile profile image
25 Replies

I recently accessed my medical record to review all of my doctor visits since being diagnosed with an autoimmune disease. In my record, my rheumatologist states that I suffer from irritable bowel syndrome, interstitial cystitis, anxiety/depression, tension headaches/migraines, temporomandibular joint syndrome, insomnia and fatigue. I can admit to insomnia and fatigue, but at no time, EVER, in my life have I ever suffered from the other conditions in this list. I don't know where he got this information. He has never asked me anything about them except headaches--to which I answered maybe one every 2 months or so (usually related to coffee!). I have gone through the proper channels to argue my case and I seem to have support. However, the doctor became "defensive" and still refuses to change anything. In your opinion here, should I pursue legal action? I am not quick to do so, but the false information in my record could impact future treatment, life insurance, health insurance (in the US) etc. Help!

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shareasmile profile image
shareasmile
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25 Replies
MarsBarKid profile image
MarsBarKid

I'd weigh up what it means monetary wise. Cost of legal action against the cost to you if rejected say due to being so ill etc.

I am so sorry for your dilemma.

Just sit back and have a couple of days think, I would. Maybe its not that bad.

Make inquiries maybe if this will really affect you and then how to get it removed.

See your GP and discuss with him maybe can help - and so on. Has to be ways out other than legal which only makes money for Lawyers, for whom Shakespeare had the answer. :) Google quote will cheer you up.

Hugs.

shareasmile profile image
shareasmile in reply to MarsBarKid

Thankfully, no legal action necessary! See below for how it has been resolved.

Shakespeare was a wise one!! =)

I am in the same situation in that on my list of diagnosed conditions it says I had Scurvy! This was due to a nonsense a few years ago when I got a severe follicular rash all down my legs and feet and my GP sent a photo to a professor of dermatology for an urgent opinion and he came up with Scurvy -although he'd met me a few months earlier and must have seen that I really wasnt the type to be nutritionally deficient! I can't get it removed now either -I did ask a gp but he said it would have to go back to the guy who diagnosed it over the internet - and he's retired. I was diagnosed and treated for RA for five years but I notice that's nowhere to be seen now!

Somewhere on my list were the terms functional hemiparisis and depression - but they have both thankfully fallen off with rheumatology and neurology now. Also Raynauds has gone and been replaced by small fibre neuropathy.

So if a new consultant can pick and choose which they agree with then it must be possible to get these taken off without you having to take legal action? I formally complained about a surgeon last year who failed to mention that he'd found reflux/GERD in his endoscopy report and the photos have also been lost. It seems that doctors and surgeons can be very subjective doesn't it? - but if we are thought to be diagnosing our own symptoms then there's a suggestion that we are suffering from health anxiety!?

I guess in your case you need to get a new consultant who overrides these false listings and allows them to drop off the radar now?

shareasmile profile image
shareasmile in reply to

We definitely have to be diligent and relentless sometimes in order to get the respect and treatment we deserve! See below for how this resolved.

Cann profile image
Cann

From my experience, don't bother. I have had a lot of experience with this and you are fighting either a corrupt regime or an ignorant one.

I was given an unnecessary hysterectomy in 2000 when it was my bowel that was the problem.

I went in hospital for a bladder and bowel repair.

However, they did the bladder repair and a hysterectomy which there was no need - my periods were normal.

Of course, my body went into shock from the trauma and to cut a long story short, my temperature rose and white count, too and I was given 2 courses of a strong broad spectrum antibiotic that I shouldn't have with penicillin allergy, for a suspected infection although none could be found after numerous painful blood tests.

In fact it was 3 pieces of the internal dressing pack mesh adhered to my insides for six weeks after the dressing pack was removed. I was given further courses of less dangerous antibiotics until the pieces emerged from my vagina and the symptoms decreased.

Needless to say I became seriously ill with severe allergies and immune system problems.

I wanted to find out why I became seriously ill because I needed to get myself well.

However, firstly I needed to have my medical records and study them.

I had great difficulty getting my medical records and then I was appalled at what I read and how many of the records had been removed.

My negative smear test result was removed because they said the second appointment was for a smear test when it was to have a support fitted while I waited for the bladder and bowel repair which meant 9 months of waiting and I felt the prolapse could deteriorate to include my uterus, which wasn't the problem at that time. I had made it clear I did not want a hysterectomy and this is why I had the second appointment not for a smear test because I had just had one and it was normal.

They were trying to make up reasons why they did a hysterectomy instead of a bowel repair.

My allergy to penicillin was clear on my records, so they stated they gave me a different antibiotic and it took me 5 years and going to the ombudsman to get the name of the antibiotic they gave me - they with held it until the time for me suing had passed.

I was too ill to sue anyway, but I needed to know to help myself get well.

My bad reaction to amoxicillin in 1994 was also erased.

I could go on, but as a solicitor told me it is very difficult to get a result as they lie, lose records and do all they can to prevent a favourable verdict for the patient.

It takes years and I decided I want to live my life and look after my health as much as possible not waste it fighting a corrupt regime in my opinion and I still have all my records to prove this should I need to.

One thing it has taught me, is to be very careful what I take now and what I allow them to do to me, or talk me into and most of all I avoid hospitals and doctors, too, as much as I can!!!!

Samaka profile image
Samaka in reply to Cann

exactly , best thing is to avoid doctors everywhere 👍👍👍

shareasmile profile image
shareasmile in reply to Cann

Cann, you have had an awful experience! I am sorry that you have had such terrible time throughout your treatment. It is disturbing that medical facilities can manipulate our health information to fit their desire and deception. Thankfully my case has been resolved (at least that is what I've been led to believe!). See my entry below.

Hippykar profile image
Hippykar in reply to Cann

Same feelings here. I've been seriously ill following surgery, allergic to everything now, no sign of any of this on my records anywhere. When your life is nearly taken from you, you realise the truth. No point fighting.

Cann profile image
Cann in reply to Hippykar

You sound just like me, Hippykar - I do now have my allergies on my emergency care summary including my electro-sensitivity.

Keep changing doctors until you find one that understands.

That is what I did, although he has now left - I am sure because he doesn't fit into the usual slot of conventional doctors and it was too stressful for him - he was a healer and not many are these days or they could be, but the system doesn't allow it and that age old corruption factor of money influences everything.

I can tell in the eyes of 'healing' doctors and if I can't see that, I leave and try another.

Hippykar profile image
Hippykar in reply to Cann

Thank you for your advice Cann. Unfortunately at my surgery the doctors keep changing. One Australian doctor was very good and she told me that from my records it would seem that whatever they had done to me in the past had made me worse! Why on earth did those other doctors let me go ahead with such a major operation? She said I wouldn't be able to have any other metal implants ever. Told me only to take medication if it's to save my life. That's what I've been left with - a wrecked immune system, horrific allergies and horrific pain. I have no life now. Beware, is all I can say. Not everyone is made the same and some human beings cannot tolerate such invasive surgeries or medications. They ignored the warning signs that as "professionals" should have been obvious. I hope you get the help you deserve.

Cann profile image
Cann in reply to Hippykar

Yes, it seems the same for me. I can take no medications or supplements and I get so ill even with dental treatment.

I have had many tests by complementary practitioners to see if I can take anything to help, but they all come up with the same answers - not the doctors, though, they still say I should take this and that and yet they have not checked back through my records and seen how ill the system made me.

I just have to be aware, but I know there are more and more people like us and it is on the increase.

We can only spread the word, Hippykar and keep positive because the body has an awesome ability to heal itself - only if we listen to it and honour it and do not allow the same mistakes again.

Hippykar profile image
Hippykar in reply to Cann

Oh I cannot believe how similar we are. It has taken me four years since having my metalwork out to be able to manage simple daily tasks. I've suffered PTSD from all the trauma too which makes it difficult. There are some doctors who admit this happens to some people but of course not in writing! Help is very difficult to find. Some just don't listen whereas others are great but their hands are tied. Things need to change.

Cann profile image
Cann in reply to Hippykar

Yes, for people like us, it certainly needs to change because we miss out by not being able to have treatment without suffering trauma or toxicity.

I am sure it will change, but as my former GP stated, it will only change slowly.

I think it is only patient power that can do it and with so many of us being sick it is hard for us to do very much.

Like doctors, some dentists understand the dangers of trauma.

One of the strange reactions I had to an extraction was I couldn't use my bowel for 4 days afterwards and my dentist said 'My bowel just shut down with the trauma'.

She retired, but was brilliant and knew I could only have one crown root removed every 3 months.

I have improved over the years though, but still have to be careful.

jacrjacr profile image
jacrjacr

I WOULD change drs and just tell my next dr that the nurse or data entry person has incorrectly added information to my chart that was inaccurate so you no longer trust that establishment to diagnose or administer medication and want a new dr.Some dr probably dont remember what patient said because just too many patients and cant remember the history but data entry clerks or people can be too quick to pick the multi choices on charts on computers permanently scarring your chart and if you were ever incapacitated...this could really be dangerous if someone went by your chart.

shareasmile profile image
shareasmile in reply to jacrjacr

jacrjacr, the fact that my future treatment or medical decisions might be based on some untruths in my record is what scared me the most! I think my case has now been resolved (see below) and I will NEVER see that rheumatologist again!

Cas70 profile image
Cas70

I would agree with jacrjacr - unfortunately these things do happen and it is better for you to start afresh - better for your health mind and body. Good luck

shareasmile profile image
shareasmile in reply to Cas70

Thanks, Cas70! Believe me, I will NEVER see that doctor again!

Tripitaka profile image
Tripitaka

My gosh this misreporting in medical records sounds scary and full of POTENTIAL problems in future care and insurances. We need reassurance and care from health professionals when we are vulnerable with unpredictable chronic autoimmune diseases.......this post has really made me think.

I hope you get your record appropriately changed to reflect your actual health, and also an apology for stressing you out!!

Bright blessings X

TTxx

shareasmile profile image
shareasmile in reply to Tripitaka

Tripitaka, you need to be intimately involved in your healthcare from all sides! My record has officially been changed as of today and I DID get an apology from the practice--not from the doctor. But all is good and I will never have to see that Rheumatologist again. Moving on!

Bright blessings (I love that!) to you also!

Cann profile image
Cann in reply to shareasmile

That's good.

Yes, we do need to be 'on the ball' regarding our records, and treatment.

I did get an apology from the patients' liaison officer after about 7 years!

He said I had every right to be angry - an understatement for someone who had one of the most important organs of her body removed on a whim and was given drugs she should have not been given with a penicillin allergy.

He was a very nice person, but he wasn't the one who committed the offences.

Tripitaka profile image
Tripitaka in reply to shareasmile

Sounds like you have got a good result in the end. Good for you. Shame we have to fight in the first place, but good on you.

Take care x

Meganx3 profile image
Meganx3

Hi

I too have been shocked by what doctors wrote about me in my notes from when i had pneumonia. They stated that i refused a medical procedure they wanted to do. When the truth is that they tried to perform the procedure twice and they could not drain any fluid from one lung that they mistakenly thought had partially collapsed due to a build up of fluid. In fact after an MRI i was found to have several embolisms in each lung and the partial collapse was dry and not fluid filled. They had jumped the gun and stuck a long needle through my back and they couldn't get passed my ribs. Its like they tried to hide their error about why my lung partially collapsed and the fact that they wanted to perform a procedure which was in fact not only unnecessary but could have been dangerous, by writing down on my records that i refused that test!

Personally. I would go and see my GP because all your medical information should be on your records. See if any of the incorrect information originated from the initial referral by your GP. If it did not. I would chat to your GP and tell him what you have discovered. Only you can make any decisions about how you eish to proceed. I wish you all the best, whatever your choice. X

shareasmile profile image
shareasmile in reply to Meganx3

Thank you, Meganx3. I have learned to keep close track of what is recorded about my health. Just imagine what was recorded in people's records before we had access to them!

shareasmile profile image
shareasmile

Hello everyone and thank you for your helpful advice and encouragement! I received an email today from the Medical Records specialist at that office. She got the Medical Director involved along with Risk Management. Finally, the Rheumatologist made the necessary addendum and corrected his miscues. Whew! I didn't even have to mention legal action, so they must have been convinced by my detailed account that I deserved that addendum! Yay! I am so relieved! Now, on to my new Rheumatologist!

Carole-J profile image
Carole-J

Contact PALS they can help you

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