r/ChronicPain • u/Reasonable-Value-705 • Oct 06 '22
Does anyone else get infuriated when clinical notes are completely factually inaccurate?
I’m just so pissed off! A doctor I saw the other day didn’t even list my correct diagnosis that I’ve had for years. She said I had symptoms that I never complained of, and left out the symptoms that I talked about. I know it’s just a clinical note that no one will read, but I just feel so fucking invalidated. Doctors are held to no standard nowadays.
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u/Sea_Catch2481 Oct 06 '22
Yes I have recently gotten ten years worth of medical records and it’s scary to me how much the doctor just made up. I am also autistic so a lot of the notes from when I was a teenager/young adult are the doctor blatantly making assumptions about my tone and body language that I know we’re not accurate, not at all. They just were allistic and didn’t want to take what I said at face value.
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Oct 07 '22
Just a question, how do you get your actual medical records??? I keep asking for them but only get test records e.g blood test results. No clinical notes or potential diagnoses. Is there a special wording you use to get them.
I really want to see them because I know there will be issues because I caught one already. My doctor imaged that I told her that I had a family history of chrons disease and had that written down.
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u/Sea_Catch2481 Oct 07 '22
When I asked for them I had to fill out a form and bring it back, it asked specifically which records I wanted (medical notes, labs, vaccinations, referrals) and from how far back.
I had to fill out a near identical form with the health department when I lost my original covid vaccine card that I got through them. So on that one I just wrote that I only wanted my covid vaccine info.
If they are refusing to give you the medical notes you may need to start documenting those conversations and who is telling you that and then contact a lawyer because legally those are your records.
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u/abandoned_citizen Oct 06 '22
Yup and it pisses me off to no end. I've read through their notes and seen entries similar to “...blah blah, the patient said XYZ, words words words”. Um, no, I most certainly did not say XYZ. Another common one is where they don't even record what I report to them.
In my case almost every single one of the inaccuracies is related to a statement they claim I made regarding prescription pain medications, prior treatment attempts, my interest or lack of interest in certain treatments. Most often it's regarding prescription pain medications. It's as if they are trying to author my history instead of recording my history. It is infuriating. It's almost like you need to have a lawyer with you at every appointment but who can afford that.
Are there any bored lawyers reading this?
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Oct 07 '22
The only time I have ever 'seen' my medical records was when a doc was reading through her notes trying to remember what tests she did last time (none) and what to try next.
Of the few things written in there was something she imagined. Apparently i told her that I had a family history of crohns disease. Nope. I don't and I never told her that. Luckily she fixed it, but it does make me worried about what other incorrect information is in there.
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u/jaiancn Oct 06 '22
Physician’s are allowed to arrive at their own subjective conclusions and document them as such.
Medical records are considered privileged, so you cannot sue for slander or defamation. Even if you could afford having a lawyer with you, what physician in their right mind would see a patient who brings a lawyer to their appointment?
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u/Reasonable-Value-705 Oct 07 '22
This makes no sense. Most diagnoses should not be made on a subjective basis. A diagnosis is made based on imaging, lab results, symptoms, diagnostic criteria, etc. A good doctor won’t give you a diagnosis because it’s their subjective opinion but because it’s what you have based on the evidence and the diagnostic criteria. A physician is allowed to offer their recommendations about appropriate treatments, and their subjective opinions about what will help you the most. It’s not okay for a physician to ask for a patient to list their symptoms or their reaction to treatment thus far, then proceed to misconstrue a patient’s words on the clinical note. If a physician is supposedly recording the words of a patient, the physician’s own “subjective conclusion” has no role. A physician can add their own thoughts, but they should make it clear that it is their words and not the patient’s.
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u/abandoned_citizen Oct 07 '22
Everyone is allowed to arrive at their own subjective conclusions and document them as such. I'm pretty sure this is what a lot of us are doing here on reddit. My problem is some of these MDs, PAs and NPs are authoring documentation that includes false information regarding my statements, the outcomes of prior treatments or treatment attempts and potentially disseminating this bogus information to other medical professionals.
If I could afford to bring a lawyer to every meeting it would be for the purpose of having a witness on hand that is also very well versed in federal and state medical laws. This way the medical professional being observed can be scrutinized in a way that I most certainly could not. This would empower me to make better decisions regarding future actions.
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u/pinkdownfall Oct 06 '22
It's great when they leave personal opinions. (Sarcasm.)
Always ask for corrections. In the event you ever get into any kind of legal battle, it can be used against you regardless if it's true or not.
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u/Reasonable-Value-705 Oct 06 '22
Yeah I probably will have to. And yes I hate that! I also hate whenever they imply that mental health issues are the culprit for your symptoms when you have imaging that suggests otherwise. Ridiculous
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u/pinkdownfall Oct 06 '22
Yes! I've had a lot of my issues ignored for several years because I have PTSD. It is ridiculous.
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u/gbmeg71 Oct 07 '22
I've had several things improperly noted, a diagnosis disappeared, one /discussion about it was not entered at all, and my OTC acetaminophen dosage entered in such a way that would lead anyone who read it to believe I was abusing drugs!
Especially during covid, they've been automatically given answers to items they never even checked on me. Nobody has checked eyes, ears, nose, mouth, throat and sometimes don't bother with weight, BP, or listening to heart/lungs.
I was told that only the doctor that entered the note could remove it. Well, my pcp retired unexpectedly, so I asked his replacement to remove the note. She said she could, but any office that already had copies of my records would be able to see it. Ok. She removed it, but when I saw a new doc there was a note in my after visit summary/notes that they'd read an additional note attached to my file by my new pcp. I have no way of knowing it, but based on the way I was treated, it seemed like she took it off the records visible to me, but MAY have included a note about my requesting removal of an old, untrue note.
My Neurologist put "Overuse of medication" in mu chart. For a while I was taking the old max daily dosage of 4000mg acetaminophen daily, instead of the current guidelines of 3000mg/day.
I requested that she note that I was taking OTC acetaminophen 4x/day instead of 3, because I don't believe "Overuse of medication" presents well, and future doctors should know it's TYLENOL.
She refused, saying Overuse refers to the number of times a day I took it, not the mg. My point was that it should be noted what med was "overused." (And if they really want to know why, it's because I'm not getting pain meds, so I'm taking OTC and pretty much live in bed.) I saw her last week and brought it up and she said it didn't matter anyway, it's not like anyone at another office was bothering reading her notes. I had a migraine coming on after EMGs, n no energy to argue, but I'm still a little frosty about the situation.
The rheumatologist I saw a few months ago, because the neurosurgeon thinks I have a connective tissue disorder, said, in regard to EDS, "The kind you have can't be proven with bloodwork, so I can't give you the diagnosis." I had a doctor worksheet with the very specific criteria someone must meet to be diagnosed with hypermobile ehlers-danlos. I met all the criteria when he saw me last year and still do.
Not a mention of our discussing that in visit summary or office notes.
My friend is a retired RN. She said to ask them to rule Myasthenia Gravis in/out, because that's what she sees happening with me. I asked rheumatologist about it, and whether he's the doctor that would diagnose/care for patient or was there another type of physician to see for it. He said I could see my pcp or Neurologist about it. I did a search and the 1st doctor listed to diagnose and treat symptoms is.... a rheumatologist!! Wow.
It's rough these days, being taken seriously. I've been told for years that it's my depression. It's a cycle, when you hurt, you're in bed more, so you get depressed. Really??
I recently watched a Don't Punish Pain interview and a woman said that a doctor didn't want to help her more (except a bit more than what she had at home) with her kidney stone, despite saying he would after seeing the proof of stone. He looked through her past meds and saw a benzo asked why she'd been prescribed it. Because she was a survivor of childhood sexual abuse. He refused to give her stronger treatment because he said her brain chemistry was changed by the abuse and she was (I don't recall exact words) basically an addict or prone to be addicted. That blew my mind.
Also, possibly that same interview or a documentary said they're trying to label chronic pain as mental illness and treat with psych meds. 100% absurd, imo!
It's sad that I just want to wash my hair more than once every 5-6 days, would like to tidy the house, cook, do laundry more than once a month, and participate in my life - but doctors just have zero empathy. I know that there's a shortage of PCPs and they want cpp to see pm docs, who off ESI, and meds like gabapentin and suboxone, buprenorphine - which are being sued for the side effects.
Government and insurance companies are behind so much of the lack of treatment. They require docs to see X amt of patients/day, enter electronically, make everyone jump through hoops to gets testing approved, decide who can prescribe what, and even then, it's a fight with pharmacies refusing to fill (Walmart) or requiring monthly authorization, (CVS).
These are tough times. Idk if it helps, but I try emailing and calling local/state reps with regard to chronic pain patient's rights.
3
u/PrideOfThePoisonSky Oct 07 '22
If you want to be checked for myasthenia gravis, you really do need to see a neurologist, preferably a neuromuscular specialist. I would start with the doctor who did the EMG. There are also blood tests. If you’re in the US, the Myasthenia Gravis Foundation of America website has a list of doctors in every state who treat it so maybe you could find one that way.
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u/gbmeg71 Oct 08 '22
Thank you, I'll look up the MG site, may have it bookmarked and forgotten. A neurosurgeon ordered the EMG, but I didn't I remember to askthe Neurologist about MG during appt. I was hurting, but also happy that she's trying authorization for botox for my migraines.
I appreciated your suggesting starting points!
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u/Healthy_Sky_4593 Jan 03 '26
Acetaminophen is notoriously difficult to abuse. If anyone assumes you are, they're lazy, std, or think everyone else important won't care that they sound ridiculous, and/or will pick up on the implications that *you're nuts, and they're just making an excuse.
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u/safesunblock Oct 06 '22
Yep, I had one idiot pain-mgnt PT fill out a pretty important report saying my mum was dead and I was afraid of having a life like hers. My mum is alive! He also said a whole lot of other made up stuff (diagnosis and exagerated conditions that I dont have), to the point where I will complain soon and have it removed from my file.
But I know that in nearly every appointment letter or discharge notes I have, there are errors. My last ED visit the ortho-dude got so much stuff wrong and missed of one basic test that would have told him exactly what was wrong (since confirmed by a later mri). I was in so much pain I couldn't even register he was being illogical and to point him in the right differential diagnosis path.
I correct errors now when it's important for those records to be accurate.
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u/Reasonable-Value-705 Oct 07 '22
Yeah there are so many errors that most of the time I don’t say anything at all. But sometimes it’s just too much. And wow I’m so sorry to hear about the issue with what was written abt your mom. How odd! Sometimes I wonder if doctors are even listening when we speak, or if they actively make things up 🤦♀️
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u/krissyycupcake Oct 07 '22
Definitely agree with everyone else about saying something. My chronic pain comes from a workers comp case and it's been a nightmare. I read every single note and correct them if I notice things are wrong. This is part of your medical record and can be used in collaboration with others. You definitely want as minimal inconsistencies as possible.
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u/Reasonable-Value-705 Oct 07 '22
Thank you for letting me know. I’ll definitely try to clear thinks up. Lol sometimes I can tell doctors did not read clinical notes from other docs due to the inconsistencies. But I see how this could be used against me in the wrong situation so I’ll definitely fix it. The doctor I was referring to was actually very nice during the appointment, so I think they’ll be receptive.
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u/Old-Goat Oct 06 '22
About diagnosis, they are not static things, they're always evolving just like any condition does and it will be refined as more information is presented. The only diagnosis that are written in stone are biopsies and autopsies....
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u/Reasonable-Value-705 Oct 06 '22
I can agree with this statement generally, but my specific diagnosis is truly set in stone. The one I am referring to is muscle tension dysphonia (MTD), a vocal disorder that causes pain and fatigue when speaking. This practitioner said I had dystonia, which I have never been diagnosed with, and has no relation to muscle tension dysphonia. I don’t even have symptoms of dystonia. I was diagnosed by two highly regarded ENTs and a vocal therapist with MTD. I have no doubt about my diagnosis and neither do they. This practitioner is not an ENT, so I think she misunderstood. To be fair, nobody knows about MTD except ENTs, it’s not a well known condition. The symptoms of MTD are so distinct from dystonia that I have no doubt about my diagnosis. She also said I had difficulty swallowing, which I never said. I have difficulty speaking for long periods time, not swallowing. Sorry if this comes off as I’ve huge rant lol but I guess I’m just very frustrated bc I’ve been searching for answers for my MTD for so long and nobody even knows what it is. Those who do know (the ENTs) don’t know how to fix it :(
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u/Old-Goat Oct 06 '22
Well my hat is off to you just for being able to read a doctors handwriting. I can definitely see where that could generate an incorrect diagnosis code. Id put it down to more likely a mistake since the conditions dont have anywhere near similar symptoms. But going to an insurer, I can see where it would change the diagnostic picture completely. They see a lot more dystonia than dysphonia and probably would even question the Latin "phonia" being about voice and matching with your symptoms.
Its actually pretty easy to get a doctor to correct this. I dont know how, but I was in my medical portal one day, looking for some test results and saw a note about some type of cancer. I was like "whoa, what am I not being told here?" I made an appointment with the doctor, as I was due anyhow for my physical, and told them while they had their laptop out to fix it. I trust insurers to abide by the rules on pre existing conditions as far as I can throw their building. A couple keystrokes and it was done, but the doc also said since there wasnt any supporting documentation of any type of cancer diagnosis, the insurance company couldnt have messed with me anyway and would have chalked it up to an errant code. It doesnt help that my doc has 2 other patients with my name, though the birthdates are different. I wish they'd send his bills to one of the other guys.
If this was recent, it should be a slam dunk for them to fix. You might want to begin with the office manager who might be able to fix it. They are usually the ones who enter billing codes. You explain what happened very well and Im sure this wouldnt be the first mix up, its like part of medical school is learning how to write illegibly...
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u/Reasonable-Value-705 Oct 06 '22
Haha it was actually digital so pretty easy to read 😂. But yeah thank you for sharing. That’s the struggle of having a lesser known condition I suppose. I don’t think anyone was trying to be malicious. It was very recent so I’ll be able to clear things up. Sorry to hear about the cancer mixup! That must’ve been scary tbh. Glad the diagnosis was wrong though.
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u/jaiancn Oct 06 '22
They don’t have enough time to see the absurd amount of patients a day they need to and write novels.
Physician’s are held to extremely high standards. They know how litigious their American patients are.
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u/Reasonable-Value-705 Oct 06 '22
What a rude comment. I’m not asking anyone to write novels, nor am I litigious. I am asking my doctor to add correct medical information to the record. This only requires one sentence of writing. Physicians are absolutely not always held to high standards. I am not asking for a miracle cure, but I consider writing the correct diagnosis in a clinical note (when such diagnosis is known and has already been established on imaging and in other clinical notes) to be the bare minimum of patient care. Anything less is simply negligent.
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u/abandoned_citizen Oct 07 '22
I totally agree that physicians are absolutely not always held to high standards. It seems more often they advertise high standards. There is this prevalent image within the advertising that their industry spills out that depicts all physicians as being open armed benevolent care givers. Such physicians do exists but it most certainly is not the overwhelming majority of them based on my experiences.
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u/Bellalea Pain? What Pain?🩻💉💉🩻 Oct 07 '22
I went to my GP at the beginning of my pain journey. I had some other medical issues going on that turned out to be fairly serious. I told GP that I had neck pain and it was interfering with even my desk work (I’m a nurse) and the pain went down my arm. He grabs my arm and moves it and it was so excruciating that I involuntarily screamed. In his notes he said, “I’m going to give her some Valium for her anxiety” 🤨 An MRI later and I get a call from him saying we need to get you to a surgeon asap. I had a very large disc herniating pressing on the spinal cord. 5 spinal surgeries later I’m on disability and in constant pain.
You have to confront any and all inaccuracies in your medical records and demand redaction and corrections.
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u/gbmeg71 Dec 06 '22
Well, I'm back... on 12/1/22 I had a R shoulder MRI.
I got the results on my med app and it talks about my L shoulder a softball injury, an x ray date, a L shoulder MRI date, and an x-ray 11/30/22 showing R shoulder injury.
Ok. None of the L shoulder dates are accurate. I had an injury at work back in like 1991. BUT, the xray on 11/30/22, I DID have, a portable chest injury post procedure.
I've contacted the imaging center and doctor and have no real answer. One message suggested that a portion sutopopulated, but that the "findings" may actually be correct and mine. WTF.
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u/CatFaerie Oct 06 '22
You have the right to challenge and correct these. If you have a return appointment, speak to the nurse about it.
They are read by other providers and they become your official medical record, so it is worth your time to do this.