Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Advice Please - Doctor Wanting Other Doctors Medical Record

Discussion in 'General ME/CFS Discussion' started by Jennifer J, Feb 20, 2016.

  1. Jennifer J

    Jennifer J Senior Member

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    Hi, it's me again. Needing help, please. I'm frozen thinking about this and not sure how to describe it or go about it. I wish I was a famous actor or president with a team to advice me and help me deal with all the aspects of this disease. Thank goodness for PR and all you wonderful people who unfortunately are dealing with the same thing. My thoughts are with you as I write, I know this is similar to what many of you may deal with.

    My PCP who barely knows me or my illness, wants me to sign a release so she can have my records from my Endocrinologist and my Dermatologist. This is a problem for me and I don't know what to do.

    I've needed to see a new Endocrinologist and haven't been able to for years. The one I have, I loved until I read her notes of me. Ones from several years ago shocked me, and the most recent ones shocked me even more.

    I don't have the energy and word/brain power to do an addendum to add to my records, and my experience with this is it doesn't necessarily get passed along to agencies or do the doctors read it.

    I don't want my PCP to see these records nor do I want to try to explain them. I feel like what a doctor writes will trump with another doctor anything I have to say, will color how I'm viewed, my energy is needed elsewhere, and I may say things trying to straighten this out that will be misinterpreted, too.

    (I'm also wondering how to handle this when I do get to see a new Endocrinologist. They too will want my other Endo's name and my records.)

    I don't want all my records at my PCP's office. So many need straightened out. I've made the mistake of telling all my doctors I have CFS and why it would add complications to how they wanted to treat what I was seeing them for. Having all the records at my PCP's office makes it easier for the agencies and the doctors in my life to read all this, which doesn't fair well for me considering how I've been viewed because of CFS and how it affects me.

    Any ideas? I don't want to make things worst for myself. Thank you!
     
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  2. Old Bones

    Old Bones Senior Member

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    Oh dear! I can certainly understand your reservations about doctors being influenced by the inaccurate opinions of other medical professionals. You mentioned not having been able to see a new Endocrinologist "for years". This leads me to wonder if the medical records of your current Endocrinologist are quite out-of-date. If so, this may be a valid reason to deny signing the release form. Could you consider telling your PCP that you'd like her assessment to be based on your current situation, not that from several years ago? This explanation might also work when you do get to see a new Endocrinologist. My experience is that not all doctors even want records from other doctors. They prefer to make their own opinion -- an approach I respect.

    With respect to your Dermatologist, are you aware of something in your records that you object to? Because if not, you may be able to compromise and allow your PCP access to these records only. This may help to develop a relationship of "good will". Of course, you'd have to make sure the release form was specific regarding exactly which records you are agreeing to have released.

    Unfortunately, in these days of electronic medical records, it may be unrealistic for patients to expect most medical personnel to not have access to their complete medical file -- at least not for recent and future appointments. Where I live, my PCP has access to all on-line reports and medical tests performed by others. Every year it seems our privacy is being eroded more and more.

    Years ago, my PCP (very knowledgeable and supportive of ME patients) intentionally kept his notes brief to protect the privacy of his patients. He actually told me this.
     
    Last edited: Feb 20, 2016
  3. Kati

    Kati Patient in training

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    Hi @Jennifer J I completely understand.

    Here is what I would say:

    "In the light of having a stigmatized illness where stigma runs high in medical care, i would prefer starting on a clean slate with you and would prefer you do not see the consultation reports from these physicians, but
    I am willing to share the following... "

    And should further questions remains in the fields aforementioned, you could ask to be seen by different consultants should your PCP sees the necessity to do that.

    Best wishes.
     
  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I concur with Kati - perhaps only supply the objective tests from previous docs and exclude their subjective thoughts.
     
  5. taniaaust1

    taniaaust1 Senior Member

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    I completely understand, I have same kind of issue. It is very hard to see a new doctor and be able to start afresh and in my case I not only have CFS through my records but I also have a wrong diagnoses of borderline personality disorder on my records (done by ones who missed it was aspergers and who didn't understand the issues I get around my ME), that is a horrific diagnoses as some drs think that those with BPD just are trouble causing patients who tell lies so it can cause a doctor to be very biased towards me and have dr constantly analysing my motives for anything I say.

    Cause I'm so ill, I haven't had the energy or be able to get places to attempt to get the wrong diagnoses which causes me trouble out of my medical records.

    One thing I do to try to get around it if they are asking for my previous records from doctor (I have never met a GP who doesn't want to see my previous medical history).. is I tell new drs I see that my medical problems and history is very complex and I just want them to get to know me first and deal with whatever issue I'm there for at the time rather then being overwhelmed by all my other complex medical problems.

    I just say I don't want focus and my medical appointment time wasted by focusing on a lot of other stuff. (so you don't even have to first appointment make it sound like you are trying to hide stuff.. that is sure to further get their interest up).

    To help them, I also keep a file of all my previous medical records with the test results and previous drs letters I do want them to see, this in itself will content many doctors though others the fact you have got your own medical file, may make some think you are health obsessed. (you could say thou you have it due to having memory issues if you do, and that it helps you to remember what you've previously had tested and who you've seen. It is very handy for that! I'd be lost without mine).

    I'll show them anything which is tainted with also incorrect info at a later date when I have more energy to explain it, once they've seen me a few times at least so they have started to form their own opinion on me. (I still have seen complete turn arounds with doctors who were previously great as soon as they do read the wrong BPD diagnoses)

    So I suggest to apply under your freedom of info laws for copies of whatever your previous drs/specialists hold.. and form your own medical file with it with things you do not mind doctors seeing. (I have 2, only one is nearly 2 inches high.. enough to overwhelm most drs just with my test results and diagnoses in that).
     
    Last edited: Feb 20, 2016
  6. SickOfSickness

    SickOfSickness Senior Member

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    I've been in this position too, and it's like choosing between the one bad option or another.

    You could keep trying PCPs until you get one who understands and doesn't get the old records.

    Or you could sign the release and hope the PCP never gets those records. Most doctor's offices make you sign, but sometimes they are too busy to really request the records, or add them to your chart properly and read them. Or the requested records come incomplete or never show up.

    Do you have a friend or family member who could help you draft the addendum letter? Or could you afford to get help? I have heard of advocate people who would take on a task like this for $10-20 per hour (and I've thought that I would like that kind of small occasional job.) It might only take them a few hours at most. Or I would suggest asking your doctor for more time, and working on it over weeks. Say 20 minutes a day, or whatever you can handle.
     
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  7. barbc56

    barbc56 Senior Member

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    I would think just giving your PCP your previous test results would give him/her the necessary information to treat you. Health trends can be useful information. Beyond that I'm not sure if more is needed. There are probably exceptions to this but the health trends would most likely take priority and be less time consuming for the doctor.

    Maybe saying something to the effect that you would be willing to share any test results and other hard data and not even mention anything beyond that would be sufficient. You might not even have to do this depending on the how the release of information form is worded. I'm not familiar with these forms nor if they are just a standard request that might not go further than a signature.

    Lots of good advice by other posters.

    Good luck.
     
    Last edited: Feb 21, 2016
    Jennifer J likes this.
  8. Woolie

    Woolie Senior Member

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    Could you not request that the files be released to you personally, and then supply them? You might be able to think up some excuse (e.g., as a matter of fact, Ive asked for them myself, so will forward copies direct to your office).
     
  9. Valentijn

    Valentijn Senior Member

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    You don't need an excuse, though doctors hate doing it. I needed the files because I was moving to Europe, but they still wanted to send them directly to whoever my doctor ended up being. Eventually they printed them out and charged me $50 for the privilege.

    There were some interesting alterations to the records, which had filled in imaginary weights to suggest I had a weight gain shortly before suddenly developing a ton of stretch marks (Bartonella) and a complicated hemiplegic migraine. It was rather odd to see a weight listed for each visit, when they had actually weighed me only once or twice per year :p
     
  10. Jennifer J

    Jennifer J Senior Member

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    @Old Bones, @Kati, @ScottTriGuy, @taniaaust1, @SickOfSickness, @barbc56, @Woolie and @Valentijn, thank you so much for helping me with this and sharing your ideas and experiences. Sorry I haven't been able to respond sooner.

    You all are amazing! When I posted this, I thought there might be one suggestion that could work. Now I have several good ones that could work and be used in other situations. Thank you! Thank you! :hug:

    I feel bad. I want to respond to each of your post individually. Too much is going on medically right now that I need to put together, not enough unfuzzy head or strength.

    I'm extremely grateful to you all. :angel: My thoughts and heart is with you. Thank you everyone for your contributions.
     
  11. Kati

    Kati Patient in training

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    By all means @Jennifer J do not feel obligated to follow up and tell us anything more. I am glad the advice at was shared was helpful to you, it is all that matters.
     
  12. taniaaust1

    taniaaust1 Senior Member

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    dont worry about it, take care of yourself.
     
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  13. Jennifer J

    Jennifer J Senior Member

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    Last edited: Mar 12, 2016
  14. Jennifer J

    Jennifer J Senior Member

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    Hi, Everyone. Warning, I need to vent a little. I know probably most everyone here has experienced pieces or all of this.

    I could scream. I just received a copy of my Primary Care Doctors notes from my most recent visit. Why does it seems many/most doctors word things and take things out of context and make you seem like pysch when it's not? Is this done with every condition or only some such as ours?

    Before I had ME/CFS, my doctor in San Francisco referred me to the emergency room because she was closed. The doctors in the ER were questioning me, how many times have you been to the ER, as if I was a person that liked going to the ER. Thankfully I've only had to go a few times in my life, but seriously what if I had to go more because the doctor's office wasn't open and the concerns warranted it?

    I feel like I need to be so guarded with every word that comes out of my mouth at the doctors visit. It's hard to do when I'm so fatigued, fuzzy headed and pushing to make as much happen as possible in that visit because I can't follow up . And on top of that try to respond to any way that they are suspecting or insinuating things that aren't true about me.

    For me to try to correct the notes would take too much explaining which could/would probably make me look even worst. There's so much there in the notes that I find troubling and that will cause me problems yet explaining will make me look bad too with some of it. I have too much other in my life that can't be tended to as it is.

    I'm frustrated. I need to send these notes to other doctors I'm being referred to for other things. Many these days seem to want your PCP's last doctor note sent to them before they'll see you or even schedule an appointment.

    My doctor wrote these things that are factually wrong, and other is subjectively wrong. It all makes me look bad. I also find doctors notes are written in a way that aren't flattering to the patient. Is this just the way it is taught in med school? I know legal language can be like that, too - "allegedly", "claims".....

    I hate that the words I use are then put in quotes in the notes. This isn't a inkblot test. On top of that, they are often taken out of context. The words I use are often what is easiest to say at the moment without explaining more (or more was explained), maybe a word I had just heard and that's why it came to mind, and I generally struggle with words which some of that is more a reflection of me not being good with words.

    I feel like George Costanza's dad in Seinfeld, screaming "Serenity Now".:)

    How can you (I) not get infuriated by this? (It's not a good use of my energy.) There is so much at stake with what is written and how it affects so many things. It complicates everything. I don't have the energy and brain to correct doctors visits. Then what do I do about not having the energy to find a new doctor with so many other things more pressing? (Oh, I hope I don't sound like a broken record.)

    Thank you everyone for being there for me and us, and the fight to make it better for all. I appreciate all of you so much!
     
    Last edited: Mar 12, 2016
  15. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    @Jennifer J, I know the feeling of being horrified when reading doctors' notes, so don't feel like you're alone. I've filed a few addendums to correct factual information. I've let the psych stuff alone, as I've felt that protesting makes one look all the more guilty. A sleep doctor said he thought I "had a touch of OCD" because I was keeping a sleep diary.o_O

    I know it takes a lot of energy to put an addendum together, but I find that once it's in the mail, I stop stewing about it and I can move on and not lose any more sleep about it. My last one was two typewritten pages. I was furious that a neurologist had written that my NEW symptoms of numbness and weakness in my legs were OLD symptoms and that these symptoms had resolved; they had not resolved!

    Pick your battles. You can't create an addendum for every visit, otherwise a doctor who you see on a regular basis may not want to see you again. Here's how I create an addendum: I take the doctor's report one line at a time, so I will write something like this:

    Dr. Arrogant said: Patient's complaints are similar to those she's had in the past. (Not true.)
    Correction: These are new complaints that began mid-January 2016.

    Dr. Arrogant said: She says that she no longer has these symptoms. (Not true.)
    Correction: I still have these symptoms today.


    Of the two addendums I've filed with specialists in the last year, one disagreed with part of it, but agreed with some of it, and the other doctor accepted the addendum in its entirety. Both addendums were scanned in their entirety into my medical record.

    I've heard that sometimes doctors will behave better at the visit itself if they know the visit is being recorded. Many smart phones have the capability to record. (Check your state's laws regarding one or two-party consent.) You can say your memory isn't sharp and you want to record the visit. I don't know if recording a visit will mean that a written report will be more accurate, but it might help.

    Lately for some non-urgent doctor visits I've been typing a summary of what I want to discuss and a little bit of history. That way the doctor has the factual information they need to put in my record.

    For visits to the ER, I always speak with a nurse before I go, and when I arrive there I always say "Dr. X's nurse told me to come here because....." The nurse's note is available electronically to the ER staff, so they know I'm not making stuff up.
     
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  16. SickOfSickness

    SickOfSickness Senior Member

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    Doctors are trained to use some "legalese", but that is not the worst part. Like you said, the worst is how they find some way to quote you out of context, so you have to watch every word.

    So many doctors believe that it must be psychological if the patient has too many different complaints that don't fit some obvious diagnosis.

    It is definitely true that doctors will read the previous doctors' notes, and they will already make assumptions about you before they meet you :( This is a huge problem and so many people aren't diagnosed properly because of this psych nonsense.

    If you get a really good doctor, they can choose to ignore the previous notes.

    CFS_for_19_years has good advice. Another piece of advice is taking someone with you, preferrably male. So many doctors will believe the female patient more in that situation. It sucks, but so many of us have seen it happen.
     
  17. Braz

    Braz

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    I don't log in frequently, but when I noticed this thread I just wanted to chime in.
    Doctors, doctors ... they often don't have a clue about what they are doing, and all too often a mistake or misperception of a previous doc is adopted by a new doc. I have had horrible experiences with that. Lots of good suggestions in this thread.

    My own idea is that it is very important to make sure you start with a new doc the right way. Otherwise you'll end up with a whole series of errors, bad judgements, bad referrals. Healthcare is too important to leave it to a doc.
     
  18. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I also believe this to be true. Anyone know where I can rent a dude for a day?
     
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  19. Woolie

    Woolie Senior Member

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    That sucks, @Jennifer J. I feel so angry that you've had to deal with this extra layer of crap, on top of everything else. Its truly unfair.

    I second @SickOfSickness' suggestion here. I got treated much better after I brought my (male) partner with me on a visit.

    Also, the one from @CFS_for_19_years, of asking to record the session.

    I've found that most doctors will search for information to confirm a psychological cause. Cos its an easy way out for them. They do this by asking you how you feel about being unwell, etc. These questions can be killers, especially at the beginning. You're so upset about it all, you might have just lost your job, given up your life. If you answer frankly, you easily can end up in tears. But your doctor is not your counsellor or your friend. Not if you have ME.

    Still, you can do a lot in the session itself to stop them making notes about your psychological status.

    Its really important to go in with a strategy, so at least you provide no fuel for their psychological preconceptions (they'll still have them, of course, but at least you haven't confirmed them). But not so much that you come across as defensive, or like you're hiding something.

    I think referring the doctor back to his/her own feelings is good.

    Some suggestions:

    Q: How are you feeling about all this?
    A: (lightly, offhand) Probably pretty much how you'd imagine it'd feel if you got suddenly ill with an unspecified illness, and had to give up your job and your social life. Not that great, right?
    (it helps to have a good cry first with someone you know a day or so before you go in)

    Q: Yes, but how do you feel?
    A: Its really not fun to be so ill. But I understand that illness happens to people. What really frustrates me is that I don't seem to have any answers as to why I'm sick, and no treatments that can help. Can you imagine what that would be like?

    Q: What else has been happening in your life lately? (doctor may ask about family, work, partner, etc.)
    A: Everything was going better than ever before I got sick. I was loving my work (if applicable), having a great social life, etc.

    Watch out too for "self-esteem" and "avoidance of responsibility/pressure" questions. e.g., Do you feel responsible for (whatever)? So you feel too much has been demanded of you, that you haven't lived up to people's expectations in some way? Your answers should only ever refer to the illness. "Well, of course being ill, I haven't been able to do what I would like, which is why I want to get better so much".

    We've discussed on other threads the "bucket list" strategy - writing a list of everything you want to do if and when you get better. Refer to it when you answer your "feelings" questions. e.g. I am so looking forward to doing X, Y Z but just can't till I get better. This really worked with my doctor.

    Anger: Get politely assertive about what you want, but try not to lose your rag, they may misuse this too.

    Finally, be careful not to appear an overachiever of overanxious about work etc. They can misuse this too. Say you're keen to get back to X, you miss it, there's so much you're looking forward to doing, if only you could get your health back together. Simple stuff like "I love my job", "I love my life, and want to jump back into it" can help set the tone.

    (Of course, if you are really depressed, then you might actually want some help for that. BUT it still could work better to talk about that with another, better qualified person like a psychologist - if you can afford it. Keep the two separate).
     
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  20. daisybell

    daisybell Senior Member

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    @Woolie I love what you've written above. I think the hardest thing is maintaining emotional equilibrium in the face of expressed sympathy - if the doctor does that, I'm nearly always reduced to tears.... Which of course fuels the fire of 'she must be depressed/have mental health issues'! And on the flip side, if you don't have any emotional reaction to the questions, then of course that too is an indicator that your emotions are blunted - and you must be depressed!

    It's like a horrible mind game that is almost impossible to win. I do think though that your strategy of reflecting back to the doctor how they think they would feel is the smartest thing.
     
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