just a little question to my American friends

Daisylin
Daisylin Member Posts: 365
in Esophageal Cancer #1
As I've mentioned, we are in Canada, land of the free..... free health care that is. I am very thankful for that, and please don't misunderstand, I truly feel for all of you who are struggling with finances, and red tape while fighting for your loved ones lives. I don't mean to sound like I'm complaining, I know we have it pretty good here, all my other issues aside.

I just have a little question regarding your medical records. Are you given access to your test results etc? We have asked repeatedly to be given copies of Lee's results, and they keep brushing us off. Last week when Lee was having his chemo infusion his file was sitting there, so he started reading it. The nurse busted him and said "You really should not be reading that". Lee, with his charming ways, gave her some flirtation and smiles and sent her on her way. She did not take the file from him, but said, you should ask your doctor if you want to see those pages. I'm just wondering if that's common procedure? Why should he not have access to his own medical paperwork? When I go to get an oil change in my car they give me a 4 page summary of what they did. Why are we not granted the same courtesy with healthcare?

I think I'm the only one posting here from Canada, but just wondering if it's different in the States? Do you get copies of your tests and whatnot?

Comments

  • Donna70
    Donna70 Member Posts: 852 Member
    #2
    state law here that patients have access to records
    Hi Daisy,
    My husband is Canadian, a legal alien so to speak. We are in Maryland and as far as I know it is a state law and maybe even a federal one that we are allowed access to our medical records. I get my blood work, CT scans and other tests mailed to me. I sign releases and they let me have them. Most drs are very cooperative here and it has helped me pick up errors in the files, like operations I didn't have or heart stents didn't have. I also use them to take to drs offices in case they got lost in the paper trails at their offices. That is the situation here but offices are trying to go paperless so don't know what will happen here when that goes in place. Think you would have gotten the stent faster down here. My husbands relatives had some trouble up there sometimes getting services needed. take care,
    Donna70
  • json_2011
    json_2011 Member Posts: 100
    #3
    we do in Georgia
    We have a folder of what all they have done even down to what the lab results. When they tell you anything about a test or ect... right then ask for a copy .Or at least write it down in a notebook , to keep record. Best of luck , tell Lee i hope all goes well .



    Jason
  • Ericalynn
    Ericalynn Member Posts: 200
    #4
    json_2011 said:

    we do in Georgia
    We have a folder of what all they have done even down to what the lab results. When they tell you anything about a test or ect... right then ask for a copy .Or at least write it down in a notebook , to keep record. Best of luck , tell Lee i hope all goes well .



    Jason

    Medical records
    I have worked in healthcare for over 30 years. What happened to Lee is what use to happen in the 70's here in the states. We would tell patients if they wanted to look at their charts that they needed to review with their physician. Now all patients have the right to their medical records except for some odd reason here in Florida you have to get lab results from ordering physician. I work in medical imaging patients pick up their reports and films everyday all day long. We cannot mail reports to patient but patient can pick up reports with ID and must sign for them. Patient's family can pick up too they just need to bring a signed letter from patient. I guess I would speak to the physician and ask why you cannot get copy of records. Every physician John has seen has given me copies with no issue but that did not happen years ago.
    Thinking of you and Lee and wishing you strength!
    Erica
  • Donna70
    Donna70 Member Posts: 852 Member
    #5
    Ericalynn said:

    Medical records
    I have worked in healthcare for over 30 years. What happened to Lee is what use to happen in the 70's here in the states. We would tell patients if they wanted to look at their charts that they needed to review with their physician. Now all patients have the right to their medical records except for some odd reason here in Florida you have to get lab results from ordering physician. I work in medical imaging patients pick up their reports and films everyday all day long. We cannot mail reports to patient but patient can pick up reports with ID and must sign for them. Patient's family can pick up too they just need to bring a signed letter from patient. I guess I would speak to the physician and ask why you cannot get copy of records. Every physician John has seen has given me copies with no issue but that did not happen years ago.
    Thinking of you and Lee and wishing you strength!
    Erica

    meant j tube not stent
    Hi Daisy,
    I meant Lee would have gotten his j tube faster down here than in Canada. My MIL had to ask for oxygen therapy herself before they gave it to her. take care and good luck,
    Donna70
  • unclaw2002
    unclaw2002 Member Posts: 599
    #6
    My dad kept a notebook with
    My dad kept a notebook with all his appointments, lab results, scan results and during his chemo and radiation the order which included information about the drugs, dosages, and supplemental medications administered during chemo - he even had copies of all the business cards from the various people that he interacted with from the doctors to the nurses and nutritionists and social workers. He asked for and received copies of everything. During his chemo he closely monitored his blood work looking at his sugar levels (he was diabetic and the steroids made his sugar levels go sky high), platelet levels and liver function tests (since the cancer had spread to his liver). And he would ask questions when he saw the numbers move around and get information. I think it helped him feel better and he was proactive in his treatment - he wanted to know everything it was his nature.

    He kept that notebook with him and brought it to all his doctors appointments - he was an engineer so he was very detail oriented and organized. His doctors were always impressed because if they wanted to know something they would ask him --- unfortunately they see so many patients they don't always remember the little details. They would joke with him that he kept them on their toes. Another good thing about the notebook was that he could give it to us to review and if there was something we didn't understand or we had a question we could ask an informed question at his next appointment. Or with UPMC and MD Anderson we could email the question to the nurse or the doctor and get a response.

    MD Anderson even has a portal where you can access all your medical records - it is pretty neat - you can view all your scans, xrays etc. online. And when dad started the clinical trial at UPMC they gave him a notebook with tabs to organize the information and sheets to put business cards in of the different professionals he saw.

    I would ask the doctors to give you a copy of Lee's records, and also to allow you to have copies of everything going forward. Sometimes it is hard to read the cold hard words on the paper - but it is important to have that available because you don't always hear or absorb the information at the appointments, especially if it is bad news.

    Good luck on getting the doctors to provide you the records. Lee is really lucky to have you in his corner.

    Love and hugs,
    Cindy
  • cher76
    cher76 Member Posts: 292
    #7
    Since we also are at MD
    Since we also are at MD Anderson, as Cindy said, all we have to do is go online to their website and log in and we can pull up all of Rickie's records, everything from CT and PET scan results to clinical notes written by the nutritionist we saw. It's all there. Before we left up there last week we went by the records office and requested a hard copy of the test results as well as a CD of the scans, and were able to pick it up the next day. When we go up there we always carry his chemo records and anything else that happened down here to the doctor up there so they will have a record of it there. I can't imagine not being able to have access.
    Cheryl

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