The Waiting List: Speaking Up For Yourself

Phyllis Johnson Health Guide
  • When I asked my doctor for a referral to the lymphedema clinic last May, my arm was fine, but it was time for an evaluation and new compression sleeve.


    The clinic told my doctor’s scheduler there was a waiting list for lymphedema patients.   They would call me when there was an opening.  By mid-June, I was concerned.  So I dropped by the clinic.  They told me to expect an opening by the end of the month.


    Now this is where I dropped the ball.  No call came in June, July, August, or September.  I should have called, but I was busy.  I could see that my forearm was swelling, but I just wished the problem away.  Maybe it would get better on its own.  Maybe more frequent bandaging and self-massage would do the trick.

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    When I saw my oncologist in October for my annual check-up, I asked him for a new referral.  My oncologist’s scheduler got the same information as the one last spring—there was a waiting list; I’d be called when an opening came up.


    Finally, I did what I should have done at the very beginning.  I went by the clinic again.  I explained the situation and asked for an appointment.  The receptionist said, “Oh, you are on our list.  We were going to call you.”  Before I left, I had my appointment.


    Unfortunately, by the time I saw the therapist, my right forearm was six centimeters larger than the left--the worst measurement I have ever had.  I’m back in bandages, and at this busy time of the year, I have therapy appointments three times a week.  The irony of all of this is that the therapist was shocked to hear about a waiting list.  “Arms never wait,” she said.  


    I don’t know where the mix-up was on the clinic’s end.  I know it happened twice.  But I’m not putting all the blame on them.  I should have called more often.  I should have been on the phone asking if they had cancellations.  I could have been more insistent about the need for a quicker appointment instead of hoping the problem would magically go away.


    These kind of mix-ups happen all the time.  Call backs about mammogram reports or biopsies get lost.  Orders for lab tests go to the wrong place.  Referrals to specialists don’t get filed properly.  The people processing our medical information are usually conscientious, but they can make mistakes.  They are coping with paperwork on hundreds of patients.  The patient only has to worry about her own reports and referrals.


    I’ve learned my lesson.  Instead of being nice, compliant, and passive, I will be more proactive when there is a paperwork snafu.  I’ll call right away and politely inquire about my appointment or lab results.  If that doesn’t work, I will go by in person.  I’ll check back with my doctor if the staff isn’t doing what needs to be done.  I will be persistent until I get the results I need.

Published On: December 05, 2010