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Need to grumble

Posted , 11 users are following.

Anhaga
Anhaga

I have taken part in a bone clinic offered by our local hospital.  Last week's two hour session was an introduction to what osteoporosis is, how bones form and rebuild, etc., actually quite interesting, although I kind of knew it all it was interestingly presented and provided a context for what was to come.  Second part that week was a good session with a physiotherapist with all the usual advice about caring for the spine in the way we move, etc.  Yesterday's session was another fish altogether.  The dietitian came across as a shill for the dairy industry, which was most unfortunate.  I asked her about leafy green vegetables and she told me the calcium in them was not very bioavailable (true of spinach or beet greens, perhaps, but not true of other leafies, like kale, collards, broccoli).  Then I asked her about Vitamin K2 but after fluffing about K1 and my attempting to correct her course she said I should refer that question to the rheumatologist, who was our final authority.

The rheumatologist was only there to talk about the medications.  I asked her about vitamin K2 and she said there had been four studies none of which had shown that K2 had any effect on bone density.  There were two things wrong with that answer.  First, it's not hard to find information about Japanese studies which show that Vitamin K2 does in fact help improve bone density.  Secondly, there are other good things K2 does, like protect the body from calcium getting deposited in the wrong places.  The final thing which really distresses me.  I went to this workshop mainly because I'd been told that I'd be given my complete bone report.  Well, all we got was the t-score for the femoral neck, a figure I had already with some difficulty managed to find out more than six months ago.  When I asked about finding out the other measurements the rheumatologist told me that I didn't need to know them.  In other words, today I have no idea what the condition of my spine was last September when the scan was done.  I was really insulted by this patronizing attitude, and I don't know what to do to get more information about MY bones.

1 like, 19 replies

19 Replies

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  • jean39702
    jean39702 Anhaga

    Posted

    Hi Anhaga.  Sorry the session was so disappointing.  

    If you've actually had a bone scan, ask for a copy of the results. You have the right to request and receive the information.  Personally, I get copies of all my test results, be it lab reports or scans.  Since I travel a fair amount I also scan them and have them as PDF's in case they're needed.

    By the way, I just purchased some Vitamin K2 and will add it to my daily supplements,

  • Oregonjohn-UK
    Oregonjohn-UK Anhaga

    Posted

    Wouldn't get that problem in the UK under the NHS everything is public and I only need to ask for any results docs and my GP will just print them out.
  • helen03290
    helen03290 Anhaga

    Posted

    Your GP should also have this info and be able to print it out as well. But in most first world countries you are legally entitled to this information.
    • Anhaga
      Anhaga helen03290

      Posted

      Really cross because the rheumatologist said the info is available online to the gp, but they can't really print out all the many pages.  So I said, well, send it to me as an attachment in an email then.  But apparently that's not easy to do either and "time consuming".  Are they still in the stone age when it comes to medical files?  What I got last fall was a copy of the summary report.  This does not include any

      t-scores.  My doctor said at the time that she didn't have that information and could not give it to me.  I kept asking various people who assured me that yes she could access the information, all the doctors can access info for their own patients (of course) but they are not given t-scores in the summary.  I jumped through a few hoops and convinced the hospital to release my t-score to me.  They gave me only the femoral neck.  This I got last Novemer, I think.  As it was not osteoporosis (-2) I was literally elated!  Otherwise I would have to wait until last week to get that number.  Can you imagine, more than an extra six months weighed down with the belief that I had osteoporosis as my gp said.  But I was told when I signed up for the clinic that I'd get all my results at that time, including the pictures and everything.  So either someone didn't know any better, or they changed things over the past few months.

      I keep being told the t-score is only a small part of the picture.  But it is a part.  If I had any other condition I doubt I'd be kept in the dark this way.

      I'll keep nagging them.  Thanks for your support.

    • kathy67492
      kathy67492 Anhaga

      Posted

      This is another example of the medical profession oftentimes not wanting the patient to be part of the conversation/interpretation of test results. I am in the U.S.A. and always get a copy of MY test results, which I have paid for. However, it is often difficult to get someone to actually sit down with you and discuss the mumbo-jumbo you are reading. It is outrageous. I try to be understanding of the medical profession and their problems....same as in any other business/industry...but this is out health, our life....be your own advocate.

      i must go take my vitamin K2 now and contemplate whether to go ahead with my bone density screening in July...mmmm

    • Anhaga
      Anhaga kathy67492

      Posted

      I've just tried to find out what the regulations are about patient access to records where I live and it seems like I have access through my doctor and through any hospital where the tests were done.  So what do you do when both refuse to give the information?  More from laziness I think than any real desire to protect me and my delicate uninformed mind.

       

    • jean39702
      jean39702 Anhaga

      Posted

      As I suggested Anhaga, quote them the legislation.  Call ot visit your local Provincial or Federal Member.

      Most hospitals have a Quality/Risk Management representative to handle patient complaints, concerns, or complements.

      The records are YOURS.

  • Mrs_CJ
    Mrs_CJ Anhaga

    Posted

    Sorry to hear the clinic was so disappointing. Just proves that we have to do our own research......but it shouldn't have to be that way. 

    Here in BC, I asked my doctors receptionist for my specialists test results and she said she wasn't allowed to give them to me.  So I went back to the specialists office and she said that was crap - that patients are entitled to see all their medical records and she proceeded to print off everything for me.

    It's unfortunate that all your doctors are hiding your records.......but please keep being persistent as hopefully you will eventually figure out how to get them and perhaps make it easier for other patients who are facing the same problem. I would be like you and continue to escalate my request!

  • jean39702
    jean39702 Anhaga

    Posted

    If  theycontinue to give you a hard time you can check on the Government of Canada, or your Provincial Government web site to see about filing an access to information request.  Just telling them you will be doing so might get the action you need.
    • nick67069
      nick67069 jean39702

      Posted

      Agree with Jean... I would ask in writing at the place where you had the tests done. Keep the letter short, and quote the regulations you have found applicable at government site. That should give them incentive to print the results...Here in Japan, my rheumatologists prints the test results before the appointment, uses the copy to discuss it with me, makes notes, etc and at the end gives me a copy. Simple.
    • Anhaga
      Anhaga nick67069

      Posted

      All I can find so far is that I have the right to request the information.  Threre doesn't seem to be a corresponding requirement that the health care provider actually fill that request!  rolleyesfrown
    • Anhaga
      Anhaga

      Posted

      Thanks to the helpful friends onFacebook - one in New Zealand! -

      Freedom of Information Act: 

       Can I get access to my medical records? Yes. If the records are at one of the provincial hospitals, they are covered. You can call the Review Office and they will try to help you figure out who you should call. Please see the “Contact Us” section (page 21) for the Review Office number. If the records are not at a hospital, you need to ask the doctor directly. If you are not satisfied with their response, you need to contact the Privacy Commissioner of Canada. Check out the “Contact Them” section (page 21) for the contact information for the Privacy Commissioner of Canada.

    • Handbrake
      Handbrake Anhaga

      Posted

      Hope you get sorted Jean, my hip measurement was better than my spine measurement so it really is worth finding out . Mine printed the results off for me but only when I asked for the results. It has helped me share information with my Physio and helped us to work on key areas for muscle strength. It does make you wonder if they have only reported on your hip measurements though.🤔
    • Anhaga
      Anhaga Handbrake

      Posted

      I know I only have one measurement (femoral neck) and to be told that I "don't need" the other measurements is an insult.  Anyway I now have the relevant paragraph from our Freedom of INformation Act so will quote that if they try to brush me off again.  

      There was a pilot program some time ago where some doctors were given a chance to use a computer program to share all test results with their patients.  When the pilot was over the physicians mostly elected to carry on with the program.  Unfortunately my doctor was not among those offered participation in the pilot.  The rather large practice she is with still records everything on paper! eek

    • Handbrake
      Handbrake Anhaga

      Posted

      It's crazy isn't it? Electronic records save them so much time and duplication! Our surgery grumbled at all the work involved in linking up electronic records with the hospital but they are now reaping the benefits...no lengthy waits for lab results etc...can only be good for all of us??

    • Anhaga
      Anhaga Handbrake

      Posted

      I apparently have two choices.  One is to talk my GP into getting the results for me, and she can, I've found out how she can do this, and it won't cost me anything.  Or I can pay a fee and wait a month or two for the report to actually be delivered to me.  As I posted a few minutes ago, my physiotherapist has offered to nudge the GP into getting the report for her.

    • Handbrake
      Handbrake Anhaga

      Posted

      Great stuff,shame your Gp wasn't a bit more determined ?? Thank goodness you are ??

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