Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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Body cams to wear to medical appointments

Discussion in 'General ME/CFS Discussion' started by Jennifer J, Oct 4, 2015.

  1. Jennifer J

    Jennifer J Senior Member

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    I'm partially humoring myself and partially serious. After a visit to urgent care tonight and over hearing my nurse make some comments about me that were not the case at all, I was thinking wouldn't it be great to have a body video cam (like the police are starting to wear). I have been shocked at times reading doctors notes that did not reflect me or what took place or was said during the visit. I don't have enough energy to be more of an advocate for myself in these cases, so the video cam can!:)

    Much more I can say about the visit yet too fatigued. They want me to come back tomorrow, not sure how I'm going to do it. I generally need days to recover from that short time out, or a week or more especially when needing to have the ability to think quickly and communicate.

    I appreciate all of you so much. Thank you for contributing to this site. My heart goes out to all of you with the struggles and the challenges you are facing. Here's to better moments and days, and a cure.
     
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  2. Sasha

    Sasha Fine, thank you

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  3. whodathunkit

    whodathunkit Senior Member

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    While you can't wear body cams or recorders without consent because of legal implications (at least not in the U.S.), it might be a good idea for you to have an witness/advocate present at all times with you when you're at the doctor's office. I know it can be difficult know that can be undesirable if the medical exam gets really personal, but absent that it's their word against yours if something happens that requires further action. Sadly, there are a couple people in my neighborhood and also at my job that I won't say *a thing* to beyond the most banal of acknowledgements/greetings unless I have someone else around to witness the interaction. People say and do the damnedest things, and then will lie their asses off if confronted with the fact that what they did might net them undesirable consequences.

    Or, if you're actually just venting instead of looking for solutions, I'm just sorry it happened. Myself, I'm deaf, which is a big drawback, but one of the benefits sometimes is not having to listen to things that only agitated me back in the days when I could hear them. Stuff like this is a good case in point.
     
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  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    @Jennifer J

    I've started taking an audio recorder to my appointments - there is a lot of information at these appointments and I want to make sure I don't miss anything or mis-hear or mis-understand or forget in these time constricted meetings - they speak too quickly to take notes - I don't tell them I'm recording - I live in Canada and according to my research, it is not illegal.

    The bonus of recording my appointments is that I have an accurate recording should there be any harm by doctors. I learned this the hard way. They need to be held accountable.
     
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  5. Living Dead

    Living Dead Senior Member

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    In most states it is sufficient that only one party is notified of the telephone or live conversation recording. Exceptions:

    http://www.brickhousesecurity.com/category/hidden cameras/hidden spy camera laws.do

    An option is to say you have to record the conversation because you have memory problems. Which in most cases will be the truth anyways.
     
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  6. whodathunkit

    whodathunkit Senior Member

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    What a great idea! Just say you have to record the entire appointment. Problem solved. Unless they decline, in which case it might be better to find another doctor.
     
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  7. Snookum96

    Snookum96 Senior Member

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    That is a fantastic idea! I wish I'd been doing it from the start. I'm going to see if my phone can record a full meeting.

    And the memory problems part is true. I often bring someone with me to help me remember but that doesn't work fantastically either unless they have a great memory and can process info really quickly.

    I wonder if just the knowledge that the discussion is being taped would produce better treatment? Maybe wishful thinking on my part!
     
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  8. jess100

    jess100 Senior Member

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    That's actually a great idea. I've noticed that most doctors try to restate what you say in their own jargon and simplify it to the point that it reflects a medical phrase (that they are used to saying) and not at all what I said. Even my well meaning doctor has done this. But at least he has said-"Here are the notes from today. Let me know if you disagree with them."
    Honestly you can get small recording devices that would capture the conversation. This would be easy. It really would help you later as well to see where the diagnosis went wrong.

    When you have the energy please post what happened.
    Thanks
     
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  9. whodathunkit

    whodathunkit Senior Member

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    Possibly. I wondered the same thing during the original reading of this thread. Probably can't hurt. :D
     
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  10. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Snookum96 said:
    I wonder if just the knowledge that the discussion is being taped would produce better treatment?

    Or less harm as they would be more careful of what they say. That would be a start.

    But not necessarily provide better treatment. That's a separate issue.
     
  11. Jennifer J

    Jennifer J Senior Member

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    Thank you everyone for your replies. (Heart emoticons.) Sorry I couldn't respond sooner. Here's a couple and I'll respond to more later.

    What happened that night and my experience going back the next night, as well as reading the notes from the night before, reminded me of a Seinfeld episode. Wish I could upload the whole episode. Here's part, if anyone wants to see it, with Uncle Leo's doctor visit and the other is Elaine's.





    @Sasha thank you for your message, that was sweet of you, and thank you for the thread.:) I will check it out.


    @whodathunkit thank you for your understanding toooo. Oh, it would be a dream to actually know someone who could be my advocate or go to appointments with me. I've even posted, to no avail, on Craigslist under volunteers that I was looking for an intelligent advocate.

    It's so true the length and ways some people will go to deny or cover for themselves. It's smart that you are careful around them. I felt like a little of that went on with my visit.

    Sorry to hear that you became deaf. I liked one of your benefits.
     
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  12. SickOfSickness

    SickOfSickness Senior Member

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    It's a very good idea to run a hidden audio recorder, unknown to the doctor. It is cheap and easy to have one in a partially-open purse. With phones these days, video could also be done.

    There was a doctor I saw who was later convicted of molesting a few female patients. For every patient who testified, I am sure there were multiple he molested. Thankfully, I had a male friend with me when I saw that doctor. Hidden audio probably wouldn't prevent something from happening, but I would still be glad I had it, if I had no witness but recorded the visit.
     
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  13. whodathunkit

    whodathunkit Senior Member

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    :D

    It actually comes in quite handy sometimes. For example, I'm out walking my dogs and a neighbor I don't want to talk to approaches, I pretend I don't see them, and they know I can't hear so they don't necessarily know I'm ignoring them when they holler at me, even at close range. :devil: Or if I get trapped talking to someone I don't want to talk to, I can fake having difficulty hearing so they give up and go away. :thumbsup: I do this with telemarketers, too. They call, and I'm like "Whuuut? I'm sorry, I can't understand you. WHO do you want to talk to? WHAT??? HUH???" Etc. They always hang up on me. :D If you're gonna have disability you gotta be able to make it work in your favor sometimes.
     
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  14. Jennifer J

    Jennifer J Senior Member

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    Oh, excuse my late replies and the above big Seinfeld's. I don't know why they appeared so large. Thank you for writing and sharing what you all did!


    Thank you @ScottTryGuy.:) It's a good idea. Sorry I couldn't thank you sooner.

    @Living Dead, thank you for that site. Great idea to say I have memory problems. It can be a lot of info to take in sometimes.


    I agree @whodathunkit. It would be good to find another doctor if they declined!
     
  15. Jennifer J

    Jennifer J Senior Member

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    @ScottTriGuy, I was thinking the same thing.:)

    @SickOfSickness, that's awful that the patients or anyone has to go through that. I'm glad you had a male friend with you and nothing happened to you!


    @whodathunkit, that works well!:) Made me laugh. Reminded me of some past adventures with trying to get away from some pushy, running after you sales men.
     
  16. slysaint

    slysaint Senior Member

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    I was checking out Amazon only the other day for voice recorders for exactly the same thing. Having purchased a full copy of my medical file I was horrified by all the inaccuracies in the notes as a whole, and incensed by the doctors comments (the older notes pre computers were more succinct, nowadays it seems they write more but say less). Worryingly, sometimes things that are incorrectly reported by one doctor are then picked up by the next and so on, and before you know it something that was totally wrong to start with, now becomes fact.
    Another troubling issue is that here in the UK, despite spending millions on IT systems, every time you change gp practice's, they only put a summary of your medical history onto their system which (from what I can gather as they seem very reluctant to give precise info on their procedures) is put together by a team who sift through your entire medical file which they receive as a wad of paperwork. Quite who decides what is and what isn't included I have yet to find out.
    If there are any NHS staff or anyone who could shed more light on this I would be interested to know.
    It explains why just about every time you see a doctor you have to almost go through your entire medical history with them, not just because they couldn't be bothered to read your notes(although that could still be the case), but because what is available for them to read doesn't really tell them anything.
    For example my ongoing chronic ME, 13 years worth, is reduced to an almost unnoticeable line halfway through the list saying chronic fatigue syndrome 2001. Repeated bouts of kidney stones over two years only shows as a date in 2012 and the note 'left illiac fossa pain'. I could go on but I'd be here all day!
    Time to buy that voice recorder,......
     
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