Heath Care Control

21Dec09

I just called the cancer agency today to follow up on my BRCA testing referral. Here in Canada, I need a doctor’s referral to the cancer agency for genetic counselling and testing. I just moved to Canada four months ago. So first I had to find a doctor, which everyone will tell you is very hard. Few family doctors are accepting new patients. I dug around on the Internet and found one who seemed to have good recommendations and accepting patients. So I made an appointment to discuss my two concerns: (1) BRCA testing (2) low-back pain.

Before going on, let me say that I don’t feel very confident in working with the health care system and talking to doctors. I grew up in the U.S. and never understood how health insurance worked. My mother had me covered under her insurance. I didn’t have any serious or chronic conditions so I was lucky enough not to have to visit the doctor that often. But after my mother’s insurance stopped covering me when I was an adult, I never thought to get my own. I adopted the attitude that doctors should be avoided as much as possible. I left the country and lived in western China for a year. No insurance but I didn’t worry about that since I knew I could at least afford basic care out of pocket (though I would be more worried about the quality of the care). I later moved to Hong Kong, and was introduced to the novel system of affordable public health care. I also got free health care through the university I studied and worked at. But I still have a very apprehensive attitude about doctors. I always doubt they pay attention to my specific situation. So, I usually use the Internet to diagnose and treat myself unless it’s really something I can’t do myself.

So anyways, I went to the doctors with papers in hand. I already found the referral form on the Internet (under the health care practitioners section!) and knew to bring my mother’s report. The doctor started the usual new patient routine of asking me about my personal medical history and family history. I never know how to answer those questions. How much detail do they need? On the family history question, I asked her what type of info she wanted and she listed off several diseases. I didn’t hear cancer so I said “Nope.” Then she jumped in to “So what about this back pain you just mentioned”? I said I actually wanted to talk first about genetic testing for cancer because of my family’s history of cancer. She was a little exasperated, “That’s what I just asked you and you said no.” I felt sheepish. When I told her I wanted genetic testing and needed a referral, she injected that she wasn’t sure who to refer to me yet. I pulled up my papers and explained that I already had the forms, the necessary report, and tried to point out the procedures. She took them with a cursory glance and started saying I should have given this to the receptionist to photocopy. I told her that these were already photocopies that I had made for her. So, she assured me that they would send in the papers and then returned to the back pain problem.

As I told the doctor the symptoms (pain for 6 months, brought about from sitting, no help from NSIDs or physical therapy), she was busily writing down a referral for X-rays and physical therapy. I was relieved to see her giving me an X-ray since I thought it’s about time I figure out what the root cause of this back pain. But I really wanted to mention to her the idea of screening for ovarian cancer too, “just in case.” I really doubt that cancer is the cause, but it sure wouldn’t hurt right? Still, I couldn’t bring myself to suggest the idea. (Do I just want to do it because I am scared about the BRCA test results?) I kinda wanted to believe that if she didn’t mention it herself, then it meant it wasn’t a possibility.

So that was end. I left without ever mentioned my worries over ovarian cancer and I thought to myself, “I really don’t understand how doctor appointment’s are supposed to go.” I felt so out of control during the appointment, despite the fact that I had spent a lot of time thinking about it beforehand. I felt frustrated that the doctor didn’t let me take the lead especially when it was clear that I was well-prepared. I understand that many patients are the opposite of me and want to have the doctor do everything (including making photocopies!). But that’s not me, I feel that I know best how to take care of myself. I go to doctors to help me figure out my problem. I’d never go to the doctor for something that I know that can be taken care of with home treatment. For silly things like referral forms, I don’t understand why I can’t just get a doctor’s signature and send them myself. I have a lot more faith in me getting it filled out right and sent right away then the overworked receptionist.

A week later I had to call the office to find out the results of the X-ray (no one called me). The receptionist said “The X-rays are normal” and nothing more. That’s it? Did someone besides the receptionist actually look at those X-rays? So now what? Do I do more physical therapy even though I have already tried that route and it didn’t help? The only thing I know that helps is to avoid sitting, but that’s not a practical solution if I am ever going to work in an office again! I am still chewing over this, not sure what to make of it.

Ok, so returning to today. I called the cancer agency today because I haven’t heard anything about my referral. The extension I had found for these questions lead to a voicemail. The person-in-charge is out of office for the next two weeks. So I called the main line and explained that I had a referral sent in but didn’t know what it’s status was. The receptionist said she would forward me to the appointment line to see if an appointment had been booked. (Does that make any sense? How could I have an appointment booked when I haven’t even talked to anyone about making an appointment?) The appointment line was a voicemail which told me to leave my name and chart number. I hung up because I knew I had no chart number.

Grrrr! How on earth is it that hard to deal with referrals in a timely matter? What do they consider as a normal processing time? A month? Two or three? I know that I still have to have a counselling appointment before they can even do the test. Who knows when appointments are being booked for? Couldn’t they just make an appointment right away even if it’s several months away? Did my doctor’s receptionist really send in the referral right away like they said they would? I am so frustrated with this system. I want more control over my health care. I don’t want to just be sitting here at home waiting for the phone to ring “someday.”

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