Tuesday, December 2, 2014

When The Advocate Struggles To Advocate For Herself

I had an appointment with an immunologist a few weeks ago.  I’ve never seen an immunologist before, but I am having some problems that my rheumatologist is kind of mystified by.  So she told me that I should see an immunologist, and told me the specific doctor I should see.    

I’ve been waiting for the appointment for a couple of months.  I left work two hours early, and due to transportation issues, took a cab to get to the appointment. 

When I got to the doctor’s office, they told me they didn’t have the referral and they wouldn’t let me see the doctor without it.  I called the student health center at school.  The director, who I dealt with in regard to the referrals, was in a meeting, but the receptionist told me she would make every effort to get the message to her.

My appointment was scheduled for 4 p.m.  At 4:30 p.m., the health center director called me, apologized, and said she would fax over the referral.  To be clear, I was told on October 29th that the referral had been processed, so I’m not sure why the doctor’s office didn’t have it.

Part of the problem is the way my insurance works.  I can basically see whoever I want as long as I have a referral for it through school.  Given my complicated health situation, this basically means that I can e-mail the health center director and she will write referrals for whatever I need, especially considering that the health center doesn’t offer many of the services that I actually need. 

What this means is that my rheumatologist can tell me to see an immunologist, in this case, but because she is not associated with my school, a referral directly from her holds no weight with my insurance company. 

I was sitting with all the paper work they asked me to fill out, and someone came over to me.  She could probably tell that I was struggling to hold back tears due to frustration.  She asked the person who had been helping me if they had tried to contact my insurance company.  The woman said no, so the other woman told her to try that.  I’m not sure what that actually did.

The referral got faxed from my school and then the doctor’s office told me they have to verify it.  At 4:45 p.m., they told me that the referral has the wrong diagnostic code on it and that they can’t see me until that’s fixed, which means I won’t be seen and can’t be seen for another month.

They also told me that the doctor had to leave at exactly 5 p.m., so by the time they figured things out, there was really no time to be seen anyway. 

I sat in the office, feeling super frustrated.  I got really emotional about it.  And I wasn’t a very good advocate for myself, although I am not really sure what else I could have done.  I called the school, and I got the referral sent over.  I was led to believe that, that was all that needed to happen in order for me to be seen.  But I still didn’t get seen. 

I understand why patients get so upset and frustrated with the system.  And in my work as an advocate, I help them navigate situations just like this one.  But when it came to my own care, I couldn’t do it.  I couldn’t remain calm.  It’s not like I freaked out at anyone, but I was just a big ball of tears and emotion. 

When it’s your health, and someone is standing in your way and not willing to budge, it goes beyond frustration.  It’s not right.  A piece of paper shouldn’t define care, but it does. 

I considered asking if they would let me see the doctor if I paid out-of-pocket.  But I didn’t because I had been proactive about getting the referral.   

It would have been nice if the office would have called me a few days before the appointment, knowing that they didn’t have the referral, and knowing that they wouldn’t see me without it. 

In retrospect, I should have checked to make sure the doctor had the referral.  But I’ve never encountered a problem like this before.  I have to say, it was pretty demoralizing.  It made me feel that the doctor only cares about getting paid, and makes me wonder if I really want to get care from this person.

I contacted the health center director via email that night and she was extremely upset about the situation.  She confirmed all of my assumptions, basically for whatever reason that the doctor wasn’t really interested in doing her job.

If that wasn’t enough, I was told not to wear perfume and scented products to the appointment.  Which means that I didn’t wear deodorant all day because my deodorant is scented.  Sorry if that’s TMI, but seriously.  I couldn’t make this stuff up if I wanted to.  I don’t think my lack of deodorant had anything to do with me not being seen, though.  I hope not.   

Lessons learned:

-         Insurance rules everything.  The patient means nothing.  I really needed to see this doctor, but my health needs did not supersede bureaucratic bullshit. 

-         It’s all about money.  All anyone cares about is getting paid and making sure that there is someone out there who will pay. 

-         Always get copies of referrals so that they can’t pull this shit of saying they don’t have it.  To be fair, I have never had this problem before.

-         Apparently you have to give at least 24-hours notice if you can’t make an appointment, but a doctor’s office can cancel on  you when you should be seeing the doctor and face no negative consequences because of it.

-         I am seriously considering telling the doctor’s office that I will not pay my co-pay for the next appointment.  Technically, I’m out $70 for missed work time and the cab ride.  And because my next rheumatologist appointment is on the same day as my immunologist appointment, I’m missing an entire day of work because of that.

-         I plan to contact the patient representatives at the hospital where my doctors are, after the appointments happen, of course, because this situation is not okay.


  1. I think your plan is a great one. I'm frustrated for you, but I know that you can turn this around and into a teaching tool for them. Good luck!!

  2. A terribly frustrating situation, Leslie. I can't blame you for being so upset and angry. It's a shame that health care in the U.S. is all about money, instead of all about the patient's health. I hope you're able to get it all cleared up by the time you see these doctors again, and I think you're entirely within your rights to refuse the co-pay next time. Take care of yourself, smile, and consider yourself hugged. ;o)

  3. I am feeling more positive as I continue to read your blog. I'm new to following you but as I am relating more and more to your situations and feeling your frustrations 10 fold. I have to tell you Florida's health care system is not any better. Thanks for the positivity!