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My GP did something strange.

Discussion in 'General ME/CFS Discussion' started by Raines, Jan 18, 2015.

  1. Raines

    Raines Seize. Eggs. I don't know. Zebra. Eighties.

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    At my Dr appointment last week, my GP asked to keep my notes.
    I now always write down what I want to say and ask. I tend to type these notes, as its easier to edit them and copy stuff to etc. These notes are for me, to remind me what I want to say and mention. At the end of my appointment he asked if he could have my notes, it was a strange request and I was caught off guard by it.
    I said yes - there wasn't anything on there that I want to hide. And he printed off a label to stick on them (I assume with my details on to identify it)
    But it strikes me as odd, and now (a couple of days later) I am still feeling uncomfortable about it.
    So here is my question is this worth worrying about?
     
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  2. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I don't think you should worry about this. It does seem slightly odd but over the years I asked for patients personal notes on several occasions if it seemed to me that they had been prepared as an 'agenda' for the clinic visit. More often patients would come with a copy intended for me that I would always file in the records. If I asked for notes I would also file them in the record with a sticky on each page to make sure that if the records fell apart then the notes would be identifiable like all the other labelled pages.

    'Agenda' notes were often very useful because they would give a clear documentation of the problem as the patient saw it. If things changed later we would have a clearer picture of what things were like before. It would be particularly helpful if diagnosis was uncertain.

    I guess the only worry is that other doctors looking at the notes in the records might interpret them as a sign of someone who is a bit obsessive or a bit of a worrier (depending on what was in them). My feeling is that doctors who think like that will think like that anyway and if doctors who are actually interested in how the problem seemed to you will benefit then I see no harm. Your own notes also have the advantage of not being overlaid with the first doctors interpretation. So I would see this as a useful thing.
     
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  3. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I hope you're right, @Jonathan Edwards. The only time I recall a doctor (a neurologist) asking for a (quick) look at my notes he then commented that keeping detailed notes was a strange thing to do. I attempted through my brain fog (from struggling to answer all his questions over several minutes, which involved trying to remember precise details about my suspected TIA), to explain that I was in fact a scientist and therefore was very interested in health issues. That was only part of the truth, the other bit being that I had ME, and therefore no doctor had ever taken any interest or tried to solve any issues, so I was trying to do it myself.

    Despite being a neuro, he appeared to have never heard of ME, as he asked "What's that?" twice, and then when I explained that some people called it CFS he just mumbled something unintelligible. Very creepy man!

    That said, I have sometimes given doctors printed sheets of info which I hoped they would read. One refused point-blank, saying that it didn't 'float her boat'. (It doesn't exactly float mine either - threatens to sink it in fact - but I'm stuck with it!) She did accept the blood pressure graphs I provided, and offered them back after licking her finger to flick through them (ugh - I declined - how unhygienic :vomit:).

    There was one (Professor Pinching) who was clearly appreciative of a summary I gave him, as someone had forgotten to send me a questionnaire to complete prior to seeing him. I know he wasn't just pretending to appreciate it, as he was very understanding and respectful (apart from my mention of chemical sensitivity, about which he seemed to be a sceptic) and wrote a suitable report for my GP.
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i would say most of us have notes when we visit the doc, it goes with having ME this memory loss and also under the pump with appointments being short and feeling rushed.
     
  5. Kati

    Kati Patient in training

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    Oftentime i write notes for my GP to be attached in my file, and to be part of the record. It includes a summary of my my most disturbing symptoms, sometimes response to (failed) attempts in being more active, and also occasionally summarize visits to a specialist especially when it did not turn out as it should have (she can then compare this with the specialist's notes) This proved particularily useful in the times when my disability wasn't approved and I wasn't sure my doctor was properly documenting my symptoms.

    It is your right to request your physician's notes to your file to see what he is writing about you (and ensure it is adequate).

    Best, Kati
     
  6. Raines

    Raines Seize. Eggs. I don't know. Zebra. Eighties.

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    I hadn't thought of it like that, but thats a good point, a copy of how I felt not of how the dr interperted how I felt.
    Also nice to know drs do ask to keep patients' notes sometimes, thank you.

    I don't think I want to see my medical file - some of the drs I have seen over the years .......................
     
  7. Kati

    Kati Patient in training

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    Examining my file prompted me to write notes for my doctors. She was not writing anything at all, other tan what drugs she was refilling for. Nothing about sleep, nothing about my chest pain or shortness of breath, nothing about my POTS, nothing about my cognitive issues. These are all important documentation for disabilit, for one, and for follow-up purposes.
     
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  8. Raines

    Raines Seize. Eggs. I don't know. Zebra. Eighties.

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    Its worrying though to hear that your dr wasn't wringing down anything but your medications. You must have been so angry. Maybe I need to check that my records aren't just a list medications too.

    I have given my dr letters detailing my symptoms and so on to help him understand me and help me better (how anyone is suppose to get a clear picture of anyone with something complicated in a 10min appointment is beyond me) so all those will be in my files.
     
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  9. Kati

    Kati Patient in training

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    Legally, if the dr documents symptoms and fail sto act on them, if something happens, they are liable. Therefore, if they do not chart that you complained of said symptom, then in court, the doctor can say "I do not recall the patient telling me this". Moreover, any physicians cut corners and chart very minimally because they simply do not have time or deem the symptoms irrelevant, vague or meaningless. These are all good reasons for the patients to write notes to their doctor and ask them they be added to your file.


    i am a proponent of shared medical records, something that I hope will come available in the future.
     
    Last edited: Jan 18, 2015
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  10. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I had to fight hard to get copies of my notes sent to me. I got a batch from the previous GP. They are so chaotic I'm perhaps not surprised that GPs from there seemed to have little idea what was going on with me. Recently I finally typed up those of particular interest in a more coherent form. That was how I finally discovered that my first bout of severe hyponatraemia (dismissed on the phone, and recorded in my notes, as a panic attack!) came soon after I was prescribed an ACE inhibitor. By then I had suffered a fracture and dental damage, plus 4 days in hospital with another severe episode, and had been forced to change GPs by the appalling behaviour of doctors at the old one, aggressively blaming me for the illness, following the lead of the hospital consultant. This adverse drug effect has cost me dear in terms of reducing my ability to work. I was just keeping my head above water until then. I am now off it after 7 years...

    When I asked for the hospital notes after my admission in 2010 I was referred repeatedly to the hospital's legal department!

    Finally I got them - and more - from my new GP. They are full of errors, even attributing things to me that I have most certainly never said, portraying me in a way that friends would not recognise. Some of it is insulting, and in another context might be libellous.

    All my childhood records are missing. Any ideas about tracing these, @Jonathan Edwards?

    One thing that might be useful - and I have found particularly useful - is test results. My doctors have sometimes clearly not understood them. Now that I have them, I can look them up in the downloaded handbook of the local hospital that they use.
     
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  11. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Some UK practices already have online records that patients can access. See here for example.

    There is a lot of rubbish thought and talked about the supposed insecurity of online services. Yes - things can be hacked, but things can also get lost or damaged in the post.

    When my own first lot of records arrived by the post, they had not been carefully packaged and were spilling out of the package! Really secure, I don't think...
     
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  12. taniaaust1

    taniaaust1

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    Ive had that issue with 90%+ of my doctors. I think its cause I have so many symptoms, so even if Ive brought up 4-5 different problems during my appointment, they usually only note just 1-2 down. Due to that, my specialists all have medical files which tell rather little about how my whole illness really is. Its only when they need to wrote a letter about a symptom I have for another, that many of my symptoms finally make the medical file for the first time.

    My GP last appointment I had with her (I'd been seeing her for over a year), I finally became aware (only cause my asthma puffers were out of date when I went to use one so needed new prescriptions) that she didnt even know I have asthma attacks.
     
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  13. Kati

    Kati Patient in training

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    i think there is a potential for better collaboration between patient and physician if patients' concerns are written and added to the file. Try it out and see how your dr responds.
     
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  14. taniaaust1

    taniaaust1

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    Same here. My GP was completely horrified at some of the stuff they'd written about me in my notes to the point she actually rang one of the doctors to say something to him.

    I know one of my sisters childhood records were destroyed. I was at the local doctors clinic in a small country town (this was just before they put everyones records onto computers.. so long time ago now) and the doctor brought into the room the wrong medical records for me. My sister has the same last name and the same first initial in her first name (both T. Selth) and doctor wasnt aware it was wrong file till he opened it and see her full name.

    He got annoyed when he saw he'd grabbed the wrong persons file and instead of taking it back with him when he went to get to right one, he just ripped it up and throw it in the trash can in his clinic. (I was so shocked to see him destroy and throw my sisters file that I didnt say a thing.. yeah sure she'd moved away from that town 8 years or so before but still.. it was all her childhood medical stuff and she'd at least one major issue in childhood.. my sister was in about her 20s when her file was destroyed).

    Ive never told my sister about this, I guess I should in case she ever tries to get her childhood medical info.
     
  15. taniaaust1

    taniaaust1

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    Ive had a couple of doctors ask me for my notes but they ask at the start of the appointment or mid appointment when they notice Im trying to go throu a list of things with them. I like it when they ask me for my list as we usually run out of time so dont ever get throu everything but if they see the list first if anything catches their eye, they can deal with it first.

    The only time I havent been comfortable with a doctor asking me for something I had, was when I took a list of another doctors diagnoses for me (the other doctor had actually written it and it was on his notepaper) and there was probably some diagnoses on that which the other doctor probably wouldnt have agreed with eg "adrenal dysfunction" (thou I have had abnormal cortisol tests), "connective tissue issue?" (that was based on my shoulder tendon suddenly tearing for no good reason when young (and my other shoulder dislocated when I was a teen) and my bowel prolapsing with the ME/CFS and my IBS-C.

    I try to protect good doctors and dont want to draw attention to them by doctors who may not agree with things some others do as far as ME/CFS goe,s so felt uncomfortable with the doctor asked for the other doctors list and photocopied that. I wondered why... if he would use it against other doctor.
     
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  16. alex3619

    alex3619 Senior Member

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    If I am going to print out notes I usually print two, and I can then hand one to the doctor. I suspect this goes into the special round filing receptacle on the floor more often than not, but they cannot say they did not get the information.
     
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  17. ithought

    ithought

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    My dr takes any notes I have written down as it helps prompt him to chase things up. Infact he asks me to write things down before I see him now and he takes the list or notes away..
     
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  18. rosie26

    rosie26 Senior Member

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    My ME doctor takes my notes. I have always appreciated that she keeps a record of my symptoms, history of this illness in *my own words*.
     
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  19. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Most of the stuff I have given is attached to my records now. I know because I requested further records after I gave them the stuff, and it's there.

    Trouble is, busy doctors won't have time to read our stuff (some of which is corrections to errors) so will just read what doctors have written and not be aware when they are wrong.

    I think I have asked for the errors at least to be marked and an indication given that a correction has been supplied. How hard would that be?
     
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  20. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    That's outrageous. It's important to know about childhood illnesses, vaccinations, etc. Apart from anything else, it would save time. Doctors are forever asking me about early medical issues, so I have to waste appointment time telling them about stuff that happened 50 years ago! And of course there will be things I don't even remember.

    Doctors have no record of my Bell's palsy (which landed me in isolation in hospital at the age of 5), so I don't know if that happened after my bad bout of chickenpox (which of course isn't there either). There is not even a record of me having my appendix out!

    EDIT - I wish parents would think twice about giving their children the same initials. It's bound to cause problems. One of my brothers has done it. :rolleyes:
     

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