The most annoying bit in mine is "Patient denies anxiety. Patient denies health anxiety. I suspect this is all health anxiety" followed by constant dismissals until I eventually insisted on getting a private MRI that showed lesions. :| I think comments about 'health anxiety'/malingering are particularly infuriating because they colour the opinions of every doctor you see from then on.
I saw "patient seems distressed upon learning she has MS" and was annoyed at that. Like no shit Sherlock. No one also bothered to explain what MS was at that time.
Where I live in Canada, I do not have any access to my health records. I don't know if other places in Canada have access to theirs. When I lived in the US, I had access to my health records. It bothered me when my neurologist wrote "denies drinking alcohol, denies smoking, denies taking street drugs". And I was like WTF, it sounded like I was being accused of drinking, smoking and taking drugs and hotly denying it lol. When I asked my doctor, she said that was just the language they used in recording information. Prior to being dx'ed with MS, I had some egregious and insulting things said straight to my face, gaslighting me into thinking nothing was wrong with me, so I can only imagine what was written in the notes.
I never thought to ask for a copy of the correspondence from my neurologist to GP until my regular GP was on holidays and the new GP asked me about my MS. He showed me the correspondence in which my neuro suggested I'm in remission. I was flabbergasted. My GP must think I'm a loon complaining of ever increasing weakness and fatigue. I don't trust HCP's wholeheartedly because of the experiences I've had since being diagnosed so try and stay abreast of what's happening in the field and self advocate as much as possible.
It's absolutely medical gaslighting. Something seriously needs to be done about this situation. At best things are poorly recorded and ripe for misinterpretation (including in the forthcoming context of AI). At worst they are a literal fiction. Medical diagnoses are ignored or left out altogether. And yes, described as functional despite other specialist medical diagnoses already being in place and under treatment (which is then ignored and undermined). Medical records and evidence are written in the interests of the clinicians or institutions, with no concerns for the interests of the patient or the fact that evidence is needed for legal purposes. Random interpretations are made of situations, without complete information, and biased judgements are made on the bases of these, to then be misinterpreted on an ongoing basis, leading to loss of access to healthcare.
Some of it is barely literate. Referrals are so poorly written they are rejected on quality grounds, and then not re-done or followed up. Everything requires micromanagement and medical records challenging every step of the way. For those already overloaded by healthcare and symptoms management. It's a sh*t show.
I don't know, Doctor. I wrote pretty detailed progress notes as a psychologist. I would make a copy and start the next session reviewing the notes and giving them a copy. I think anything written is good enough to be discussed; perhaps that is the same with medical doctors? High Risk Homosexual Behavior might be better phrased without reference to "Homosexual", but maybe not- we don't know the details- "Multiple sexual partners and unprotected intercourse" is high risk. "Patient CLAIMS to eat healthy and exercise"- People make lots of claims and the doctor should not accept any of them immediately if the behavior could be related to a patient complaint (my opinion). Listen, act as if something is true, but keep the radar on for other things because… You may have a case of the next one: Borderline Personality Disorder, that involves fairly accurate diagnostic observation and written detailed description meeting many criteria. You don't want to tell a Borderline Personality Disorder that they are Borderline Personality Disorder! (at least for a while). But you do want to note it if properly diagnosed, to help the next clinician have a heads up and save some time. That's a tough one to deal with and very disruptive when you find out you've been being had for months. But don't write it down without the evidence. This one you may have to play by ear. I think we have a president that….
I believe that the self understanding that one has MS is very difficult, so yes, make sure what you write fits into some sort of communication plan. It is so complicated and the base of information a patient can get on it so varied and different and often inaccurate. A person can even assemble a collection of information that is true independently, but when combined by the purposes of the patient, is way off. Who is responsible for the way a new patient "gets it"? How should that attempt be planned, carried out and assessed? What's the criteria for success? It takes years to "get it" and random unpredictable events are often key in the process because that is the process.
I actually don't want to look at my medical notes just because of what you are describing. It's not my MS but the subject that I keep going back to my late cancer diagnosis, and the excessive gaslighting that I was subjected to before finally getting my diagnosis. If I hadn't been so determined to find out what was wrong, with the backing of a good GP, I would be dead by now. So what if I have anxiety, it doesn't mean that I wasn't unwell. Or to see that I wouldn't accept there was nothing wrong with me, when I was very obviously unwell, that would just distress me, when I need to focus on staying well.
Which bit of 12! negative urinary retention tests, don't consultants understand? How many do you need to have before other more serious causes for my symptoms are considered? Not every thing is due to my MS (something that you would have come across too many times) I accepted my MS, I wasn't anxious about my MS, I was however and still am very anxious about the rest of my care, due to my real experiences. I recently had to chase up my next oncology clinic review as it hadn't been requested or made!
So I suspect that I wouldn't like what was written in my medical notes, but not surprised or shocked as I faced it time and time again in consultations. And was discriminated against by a consultant who said "we don't do hysterectomies on people with MS" when I was asking about cancer. Nearly 2 years later I got my radical hysterectomy and some! with the drastic surgery I need to remove the aggressive cancer, a cancer that had been there when the consultant discriminated against me because I had MS, two years earlier. Oh and "how would you feel if we never find out whats wrong with you?" by a different consultant - well if they had ordered the straight forward investigation that was obviously needed then they would have found out what was wrong with me. Or if they had listened to me rather than the computer or other's notes in my medical files, again the cancer could have been diagnosed 3-4 or perhaps 5 years earlier!
So no I don't want to see my notes, I don't want to see the level of gaslighting and bias that was shown because I had MS. Folks with MS do get everything else that folks without MS get too. We are all human beings
Looking back, when it all started, my GP first didn't want to do MRI, after scans came back she said... Oh, we found something because we searched for it 🤮.
ORL specialist first said that I observe myself too much, after the exam he admitted he was wrong and distortions in inner ear might point to... So, I guess young, smart, educated, beautiful people all fake it (in the beginning) 🤣🤣
My GP told me my DEXA scan years ago was normal, 10 years later diagnosed with osteoporosis and it clearly says osteopenia in the previous results. Because he didn’t know what my nerve pain was 15years ago, he wrote that it was chronic personality pain disorder. Didn’t tell me that obviously, and I was later diagnosed with MS.
I was told off by my GP for asking my MS nurse to intervene because I had failed to get an urgent GP appointment. The reception rotweiller would only insist I rang the next morning. The pharmacist wrote a same day referral letter, but still I couldn't get an appointment. I had a uti which I know is caused by my treatment (Mavenclad) and a slight tendency to retention of urine. I knew another day would end up with me off my legs and my 13yo daughter caring for me. So I called my MS nurse in desperation. I know my body, I'm also a retired registered nurse and I can still spot a uti at 100 paces (can follow someone into the loo and know just by the smell)
You have to pull on every string available to get past the NHS Rottweilers. Had you considered asking your GP to put an alert on your electronic records that you’re immunocompromised and must be given a same day appointment if you think you have an infection. If they’re using the computer system called EMIS, the message can be set to flash up whenever someone accesses your data.
I don't hold much hope to be honest. I moved house in August and had to join another surgery, so far they've managed to take the wrong bloods, messaged me endlessly about a swab needing to be collected that I had already done and had the results for on the NHS app, and not written up my increased epilepsy meds (so lucky to have 2 neuro conditions) even after a not so gentle prod by my epilepsy nurse
It has improved significantly. When I look back through historical medical records I am sometimes shocked by the use of language. Fortunately, abbreviations like FLK (funny looking kid) are rapidly becoming an embarrassing historical artefact. As we get more access to our own records, this drives behaviour change. About 15 years ago I worked in a department where we were encouraged to write clinic letters to patients and copy in the GP rather than just writing to their GP. This really polarises the understability of your letters. Some genuine medical terminology can cause offence though, when used appropriately like, “morbidly obese”. This information is highly relevant and should be recorded, especially in a snoring clinic. To avoid wasting time answering complaints you have to use jargon like, “BMI > 40” which make the records harder to understand. The personality disorder example is interesting because the diagnosis can be deduced by counter transference, an extremely sensitive and diagnostically accurate technique, but not easy to document.
Surprised to hear all these. Living in Denmark, we have also access to our records and doctors comments on us and our condition, but never ever heard something negative. Sorry to hear
Well in my country there is only one report from neuro and I personally bring it to GP. What neuro or other specialists jot down in a file that I have there, I usually always check (while I wait 😊😊). Nothing as horrible as described, those descriptions are not ethical, professional, are humiliating. Hope things change also by our own reviews💖😇
The example, “Patient is a pleasant white female in NAD [no acute distress].”, demonstrates the problem with Three Letter Abbreviations (TLAs). In this example NAD means No Acute Distress, but it can also mean, No Abnormalities Detected or Not Actually Done. DMT can stand for Disease Modifying Therapy or Dimethyltryptamine, an illegal hallucinogen - don’t get those 2 mixed up!
I'm lucky. I've only seen minor mistakes nothing upsetting or important.
Don't write off the relevance of what you write in letters to GPS. You're right that there is often an in person assessment but you're also asked for written evidence. I have one very grim letter from you from when you diagnosed me with SPMS. It's great, I put it in my evidence bundle every time I reassessed.
I’m retired now, but as an RN and Midwife in a London Teaching hospital, I always completed the notes professionally and verbatim...no euphemisms. I don’t recall seeing any notes that were any different. It was rather drummed into us from the outset. Patients didn’t have access to their notes, but in the main it wouldn’t have been a problem if they had.
My daughter was seen by a Consultant Psychiatrist recently for her Bi Polar1 disorder and he described her as obese, when she absolutely was not and had actually lost 6st after huge effort. Her raft of medication and antipsychotics equals much weight gain. I discussed with him why that was unacceptable (causing more anxiety and depression) and he apologised and retracted it... I think he was describing me as I was with her, which was kind of amusing as I’m a bit of a chubster since my MS diagnosis and not exercising, but not obese. Anyway, the point being that another clinician reading her notes would be receiving an entirely different picture and treating her accordingly. The Consultant Psychiatrists locally are Locums who change every 6 months or so, so many consultations are done by phone without ever having seen the patient. Soon, we shall have AI to contend with....
Also, having worked in the US, there are variations of acronyms, which is not very helpful. NAD in the UK is standard for Nothing Abnormal Detected - quite different to the US version....
The most annoying bit in mine is "Patient denies anxiety. Patient denies health anxiety. I suspect this is all health anxiety" followed by constant dismissals until I eventually insisted on getting a private MRI that showed lesions. :| I think comments about 'health anxiety'/malingering are particularly infuriating because they colour the opinions of every doctor you see from then on.
I saw "patient seems distressed upon learning she has MS" and was annoyed at that. Like no shit Sherlock. No one also bothered to explain what MS was at that time.
Where I live in Canada, I do not have any access to my health records. I don't know if other places in Canada have access to theirs. When I lived in the US, I had access to my health records. It bothered me when my neurologist wrote "denies drinking alcohol, denies smoking, denies taking street drugs". And I was like WTF, it sounded like I was being accused of drinking, smoking and taking drugs and hotly denying it lol. When I asked my doctor, she said that was just the language they used in recording information. Prior to being dx'ed with MS, I had some egregious and insulting things said straight to my face, gaslighting me into thinking nothing was wrong with me, so I can only imagine what was written in the notes.
I never thought to ask for a copy of the correspondence from my neurologist to GP until my regular GP was on holidays and the new GP asked me about my MS. He showed me the correspondence in which my neuro suggested I'm in remission. I was flabbergasted. My GP must think I'm a loon complaining of ever increasing weakness and fatigue. I don't trust HCP's wholeheartedly because of the experiences I've had since being diagnosed so try and stay abreast of what's happening in the field and self advocate as much as possible.
It's absolutely medical gaslighting. Something seriously needs to be done about this situation. At best things are poorly recorded and ripe for misinterpretation (including in the forthcoming context of AI). At worst they are a literal fiction. Medical diagnoses are ignored or left out altogether. And yes, described as functional despite other specialist medical diagnoses already being in place and under treatment (which is then ignored and undermined). Medical records and evidence are written in the interests of the clinicians or institutions, with no concerns for the interests of the patient or the fact that evidence is needed for legal purposes. Random interpretations are made of situations, without complete information, and biased judgements are made on the bases of these, to then be misinterpreted on an ongoing basis, leading to loss of access to healthcare.
Some of it is barely literate. Referrals are so poorly written they are rejected on quality grounds, and then not re-done or followed up. Everything requires micromanagement and medical records challenging every step of the way. For those already overloaded by healthcare and symptoms management. It's a sh*t show.
I don't know, Doctor. I wrote pretty detailed progress notes as a psychologist. I would make a copy and start the next session reviewing the notes and giving them a copy. I think anything written is good enough to be discussed; perhaps that is the same with medical doctors? High Risk Homosexual Behavior might be better phrased without reference to "Homosexual", but maybe not- we don't know the details- "Multiple sexual partners and unprotected intercourse" is high risk. "Patient CLAIMS to eat healthy and exercise"- People make lots of claims and the doctor should not accept any of them immediately if the behavior could be related to a patient complaint (my opinion). Listen, act as if something is true, but keep the radar on for other things because… You may have a case of the next one: Borderline Personality Disorder, that involves fairly accurate diagnostic observation and written detailed description meeting many criteria. You don't want to tell a Borderline Personality Disorder that they are Borderline Personality Disorder! (at least for a while). But you do want to note it if properly diagnosed, to help the next clinician have a heads up and save some time. That's a tough one to deal with and very disruptive when you find out you've been being had for months. But don't write it down without the evidence. This one you may have to play by ear. I think we have a president that….
I believe that the self understanding that one has MS is very difficult, so yes, make sure what you write fits into some sort of communication plan. It is so complicated and the base of information a patient can get on it so varied and different and often inaccurate. A person can even assemble a collection of information that is true independently, but when combined by the purposes of the patient, is way off. Who is responsible for the way a new patient "gets it"? How should that attempt be planned, carried out and assessed? What's the criteria for success? It takes years to "get it" and random unpredictable events are often key in the process because that is the process.
I actually don't want to look at my medical notes just because of what you are describing. It's not my MS but the subject that I keep going back to my late cancer diagnosis, and the excessive gaslighting that I was subjected to before finally getting my diagnosis. If I hadn't been so determined to find out what was wrong, with the backing of a good GP, I would be dead by now. So what if I have anxiety, it doesn't mean that I wasn't unwell. Or to see that I wouldn't accept there was nothing wrong with me, when I was very obviously unwell, that would just distress me, when I need to focus on staying well.
Which bit of 12! negative urinary retention tests, don't consultants understand? How many do you need to have before other more serious causes for my symptoms are considered? Not every thing is due to my MS (something that you would have come across too many times) I accepted my MS, I wasn't anxious about my MS, I was however and still am very anxious about the rest of my care, due to my real experiences. I recently had to chase up my next oncology clinic review as it hadn't been requested or made!
So I suspect that I wouldn't like what was written in my medical notes, but not surprised or shocked as I faced it time and time again in consultations. And was discriminated against by a consultant who said "we don't do hysterectomies on people with MS" when I was asking about cancer. Nearly 2 years later I got my radical hysterectomy and some! with the drastic surgery I need to remove the aggressive cancer, a cancer that had been there when the consultant discriminated against me because I had MS, two years earlier. Oh and "how would you feel if we never find out whats wrong with you?" by a different consultant - well if they had ordered the straight forward investigation that was obviously needed then they would have found out what was wrong with me. Or if they had listened to me rather than the computer or other's notes in my medical files, again the cancer could have been diagnosed 3-4 or perhaps 5 years earlier!
So no I don't want to see my notes, I don't want to see the level of gaslighting and bias that was shown because I had MS. Folks with MS do get everything else that folks without MS get too. We are all human beings
Looking back, when it all started, my GP first didn't want to do MRI, after scans came back she said... Oh, we found something because we searched for it 🤮.
ORL specialist first said that I observe myself too much, after the exam he admitted he was wrong and distortions in inner ear might point to... So, I guess young, smart, educated, beautiful people all fake it (in the beginning) 🤣🤣
My GP told me my DEXA scan years ago was normal, 10 years later diagnosed with osteoporosis and it clearly says osteopenia in the previous results. Because he didn’t know what my nerve pain was 15years ago, he wrote that it was chronic personality pain disorder. Didn’t tell me that obviously, and I was later diagnosed with MS.
I was told off by my GP for asking my MS nurse to intervene because I had failed to get an urgent GP appointment. The reception rotweiller would only insist I rang the next morning. The pharmacist wrote a same day referral letter, but still I couldn't get an appointment. I had a uti which I know is caused by my treatment (Mavenclad) and a slight tendency to retention of urine. I knew another day would end up with me off my legs and my 13yo daughter caring for me. So I called my MS nurse in desperation. I know my body, I'm also a retired registered nurse and I can still spot a uti at 100 paces (can follow someone into the loo and know just by the smell)
You have to pull on every string available to get past the NHS Rottweilers. Had you considered asking your GP to put an alert on your electronic records that you’re immunocompromised and must be given a same day appointment if you think you have an infection. If they’re using the computer system called EMIS, the message can be set to flash up whenever someone accesses your data.
I don't hold much hope to be honest. I moved house in August and had to join another surgery, so far they've managed to take the wrong bloods, messaged me endlessly about a swab needing to be collected that I had already done and had the results for on the NHS app, and not written up my increased epilepsy meds (so lucky to have 2 neuro conditions) even after a not so gentle prod by my epilepsy nurse
It has improved significantly. When I look back through historical medical records I am sometimes shocked by the use of language. Fortunately, abbreviations like FLK (funny looking kid) are rapidly becoming an embarrassing historical artefact. As we get more access to our own records, this drives behaviour change. About 15 years ago I worked in a department where we were encouraged to write clinic letters to patients and copy in the GP rather than just writing to their GP. This really polarises the understability of your letters. Some genuine medical terminology can cause offence though, when used appropriately like, “morbidly obese”. This information is highly relevant and should be recorded, especially in a snoring clinic. To avoid wasting time answering complaints you have to use jargon like, “BMI > 40” which make the records harder to understand. The personality disorder example is interesting because the diagnosis can be deduced by counter transference, an extremely sensitive and diagnostically accurate technique, but not easy to document.
Surprised to hear all these. Living in Denmark, we have also access to our records and doctors comments on us and our condition, but never ever heard something negative. Sorry to hear
Well in my country there is only one report from neuro and I personally bring it to GP. What neuro or other specialists jot down in a file that I have there, I usually always check (while I wait 😊😊). Nothing as horrible as described, those descriptions are not ethical, professional, are humiliating. Hope things change also by our own reviews💖😇
The example, “Patient is a pleasant white female in NAD [no acute distress].”, demonstrates the problem with Three Letter Abbreviations (TLAs). In this example NAD means No Acute Distress, but it can also mean, No Abnormalities Detected or Not Actually Done. DMT can stand for Disease Modifying Therapy or Dimethyltryptamine, an illegal hallucinogen - don’t get those 2 mixed up!
Although, I believe there is currently a research trial in Australia investigating if Psychedelic Assisted Therapy is beneficial for MS.
I'm lucky. I've only seen minor mistakes nothing upsetting or important.
Don't write off the relevance of what you write in letters to GPS. You're right that there is often an in person assessment but you're also asked for written evidence. I have one very grim letter from you from when you diagnosed me with SPMS. It's great, I put it in my evidence bundle every time I reassessed.
I’m retired now, but as an RN and Midwife in a London Teaching hospital, I always completed the notes professionally and verbatim...no euphemisms. I don’t recall seeing any notes that were any different. It was rather drummed into us from the outset. Patients didn’t have access to their notes, but in the main it wouldn’t have been a problem if they had.
My daughter was seen by a Consultant Psychiatrist recently for her Bi Polar1 disorder and he described her as obese, when she absolutely was not and had actually lost 6st after huge effort. Her raft of medication and antipsychotics equals much weight gain. I discussed with him why that was unacceptable (causing more anxiety and depression) and he apologised and retracted it... I think he was describing me as I was with her, which was kind of amusing as I’m a bit of a chubster since my MS diagnosis and not exercising, but not obese. Anyway, the point being that another clinician reading her notes would be receiving an entirely different picture and treating her accordingly. The Consultant Psychiatrists locally are Locums who change every 6 months or so, so many consultations are done by phone without ever having seen the patient. Soon, we shall have AI to contend with....
Also, having worked in the US, there are variations of acronyms, which is not very helpful. NAD in the UK is standard for Nothing Abnormal Detected - quite different to the US version....
Not acronym but TLA...but that probably means something entirely different :)