This Monday could go one of two ways, and both of them involve me probably crying on the phone.
Let me back up a bit.
Last Friday was my long-awaited appointment with my new rheumatologist. I’ve been in Nashville for 5 years now, and was diagnosed with rheumatoid arthritis 4 years ago. After a year, my primary rheumatologist (at Massachusetts General Hospital) really set his foot down and made sure that I got set up with a rheum at the Vanderbilt Clinic. It wasn’t good for my health or stress levels to be seen by my doctor once every 3-4 months, depending on when school breaks were and I could fly back up north.
I saw a rheumatologist, and she seemed nice but patronizing. On our second appointment, she diagnosed me with fibromyalgia. My Mass Gen rheum mentioned first that I had neuropathic pain, but she went ahead with the full diagnosis and treatment. Over the course of two more appointments, she proceeded to talk down to me and express her doubt that I even had arthritis in the first place. Let me explain something – I have images of multiple joints with arthritis damage, 13 years of pain, and years of inflammation to prove her wrong. After one appointment where she flat out told me she didn’t believe I had arthritis – including other patronizing comments that gave me flashbacks to the times when orthopedic surgeons told my parents in code that I was probably making up my pain for attention – I swore that I would never see her again.
I managed to get through 2 more years of seeing a rheumatologist only in Boston. (For those of you who are new, I am a HUGE cheerleader for Mass Gen in a million different ways.) When I decided to stay down here full-time after graduating, I realized that I needed to try and find another Nashville rheumatologist. Because Vanderbilt is so good and they already have my medical records, I tried to stay with them.
btw, Mass Gen is #1 in the country even though Vandy is #1 in Tennessee |
Here is where things went wrong.
At the end of July, I called the Vanderbilt Clinic rheumatology’s office and tried to switch doctors within the practice. The first red flag was that they wouldn’t let me switch doctors within the practice. Umm, excuse you? This hurts patients, plain and simple. When I saw a new primary care physician in September, also at Vanderbilt, I spoke to him about this. He was just as shocked as I was and told me to try again. If it didn’t work out, he would get involved personally.
So I called back, and the administrative assistant for the department told me the exact same thing. However, she said, I could see a doctor at the Vanderbilt rheumatology office in Cool Springs. Would that work for me? When I agreed, she sent my referral over to their office. A few days later, they called me to make the appointment. Unfortunately they didn’t have a new patient appointment until December 13, which was this past Friday.
On Friday, I practically ran out of school so that I would have enough time to navigate Nashville traffic and make it to my 3:30 appointment. At 2:15, while stuck in construction traffic, I suddenly had a voicemail, but my phone didn’t ring. The voicemail was a perky receptionist from the Vanderbilt rheumatology office at Cool Springs, explaining that they would regrettably have to cancel my appointment because I had already seen a rheumatologist from Vanderbilt.
I immediately called the office back and got someone else. When I explained my confusion, he explained that yes, I couldn’t be seen by the office. I proceeded to yell and scream and cry at the poor receptionist on the other end.
This was unacceptable. Even if it was an issue, it should have been caught when the referral was made, when the appointment was made, when the paperwork went out to me, or really any time in the previous 2-3 months before the actual appointment. I needed this appointment. But making me wait up until now, it would take me months to get another new patient appointment. Me saying that I needed this appointment was not me be dramatic – it was a medical truth.
I explained that I have rheumatoid arthritis that affects 56 joints and have been in pain for 13 years and my previous Vandy rheum didn’t believe in my arthritis. Denying me this appointment was hurtful for my health and also immoral.
At this point, he put me on hold to chat with his supervisor. A minute or so later, he got my phone number for her to call me back.
When she did, we went through the entire thing over again. I cried and yelled and explained that this entire situation was the worst that I have been treated by a doctor’s office before, which was saying something considering I’ve been a patient for 13 years and have seen 10 orthopedic surgeons and this is the 4th rheumatologist I was supposed to see.
It took that – the indisputable fact that I am a professional patient and will not take no for an answer – that caused a switch it how I was treated. She promised to talk to the clinic manager, who was in a meeting for the rest of the day, and we would try and get this sorted out. But I definitely could not have my appointment on Friday. However, if this was their fault, they would make it right with me.
I called my mom and told her what happened. When I got off the phone with her, she told my dad, who texted me looking for a phone number to call them. He did, and he explained the same things that I did. And do you know what? They treated him better. The responded to him better than they responded to me.
Yes, it was definitely their fault, they told him. Yes, they would get this fixed, they said.
This was not what they told me.
When my dad and I compared notes later, I got angry all over again. I’m the patient, but they treated my father better. I’m an adult. I’m 22, I have a job teaching high school, and I’ve been a patient since before some of the doctors at that practice graduated from medical school.
I deserve to be treated with respect, not surreptitiously thrown out of the practice with a phone call 75 minutes before my appointment because of an error someone else made.
I should hopefully have an update sometime today about what they’re going to do. But I’m sharing this story not just because it makes a good blog post but also because some patients need this reminder that they need to stand up for themselves. If you don’t stand up for yourself, there’s the chance that your health will suffer for it because some doctor’s offices forget that there is a person suffering on the other end of the phone.
Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
Jackie says
I am so sorry that it was so bad for you. I am a medical professional (not at vandy) and i have to say that it gives us all a bad rep when patients are treated poorly. I am able to advocate for myself as a nurse, BUT there have been situations where I've actually realized that if I wasn't a nurse or willing to step up, the situation would have been MUCH different. I hope it all gets sorted for you 🙁
MightyCaseyMedia says
Keep kickin' butt, Kate. Every inch you win for yourself is a win for others in your same sitch – keep us posted on progress. My money's on you.
Unknown says
Great blog post and so appreciate you writing it to support patients standing up for themselves. But I'm sorry this happened to you.
Cece says
That is terrible! Health insurance costs way too much to be treated like that. You shouldn't have to yell and scream just to keep an appointment they let you keep. And that you want to switch doctors should not be such a HUGE deal.
Hannah says
This is so infuriating. I know I've had a medical logistics nightmare or two but this sounds like Vanderbilt really has some issues to work out with their system. Hang in there and I hope they can get you in to see someone soon. I'm thinking about you, I know you've been working so hard with teaching and staying healthy.
Emily says
Hope things get sorted out. I would be furious as well if this happened to me.
White Lace and Promises says
Great job at being assertive and proactive in taking care of yourself! You go, girl!
Marry rou says
Thanks for the FANTASTIC post! This information is really good and thanks a ton for sharing it 🙂
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