You Had One Job: When Healthcare Gets in the Way of Healthcare
Before I start, I just wanted to make it clear that I am pretty much just venting in this post. Maybe you can relate? (I hope not). Maybe this will help raise some kind of awareness. At the least, maybe this post will help someone else in a similar situation...
As someone living with multiple sclerosis (MS), the doctor-patient relationship is extremely important to me. I’ve had many of these “relationships” over the years, and to say it’s difficult to find a good one is definitely an understatement. Technically speaking, a doctor has many different roles to play, but from my biased perspective? It pretty much boils down to one thing; taking care of the patient, or in this case, me. I would say the absolute bare minimum required to fulfill this responsibility is making sure that we get our medication and that we get it on time.
So, what are we supposed to do when we don’t?
I can’t do it all
I’ve always considered myself a pretty low-maintenance guy. Both in my personal life and in my medical life. I don’t like drama. Let’s keep things simple and to the point. As an MS patient, you can pretty much get me set up and leave me alone. If I absolutely have to, I’ll come to you for help. Otherwise? I won’t bother you. Don’t even worry about it.
However, there are obviously things that I just can’t do on my own. For example, I can’t order my own tests, and I can’t prescribe my own medication. I’m currently on Ocrevus which is administered every six months, so the only thing my doctor really has to do is prescribe it. Simple.
That dreaded text from the pharmacy
In the weeks leading up to my target infusion date my specialty pharmacy sent me a text alert letting me know that something was wrong with my prescription and that we needed to talk. Apparently, my doctor wrote me a prescription for Ocrevus with zero refills and the pharmacy didn’t know what to do because they reached out to him but never got a response.
For nearly a month and a half, long past my infusion target date, I reached out to my doctor’s office with absolutely zero luck. I just kept getting transferred to voicemail. At one point, I was leaving a message for my doctor’s medical assistant, in addition to emailing my doctor, every day for a week. I was in constant contact with someone from my specialty pharmacy who was also calling on a daily basis to try to help me out. Unfortunately, he was also getting the voicemail treatment.
Panic, stress, and more stress
I was in a nearly constant state of panic and stress for this entire time. What would happen to me since I wasn’t getting my medication on time? I had contacted everyone I could think of, even my previous infusion nurse. I didn’t know what else to do or who else to ask for help. I felt totally alone on this one. My fatigue was at an 11 out of 10, my balance was so terrible I kept tripping on nothing, and my speech was slurring - just to name a few flaring symptoms.
Is this seriously business as usual?
When I hopelessly asked one of the telephone operators if something was going on in the office, I was told that no, everything was fine. This only made me more frustrated. Is this the standard of care all his patients are getting? I felt like I was on my own with no one to turn to for help.
Eventually, I did get my Ocrevus, but I never got an explanation for why no one at my doctor’s office was contacting me back. Not even a, “yeah, sorry about that, it’s been crazy here” when I eventually did get ahold of someone. Well, whatever, maybe it was just one of those 6-weeks that everyone has from time to time, you know?
But wait, there’s more!
Guess what? The “fun” didn’t stop there! I had this medication infused at home for the first time. During my infusion, I had a minor allergic reaction. My nurse stopped my infusion for a moment while she called my doctor to find out what he wanted her to do since they didn’t include IV Benadryl with my Ocrevus.
She too was getting the voicemail treatment. She quickly started getting mad and was demanding to talk to the doctor but she never was able to. Luckily, I was only having a minor infusion reaction so it wasn’t exactly a big deal but what if it had been? What if something had gone terribly wrong? It seemed my doctor had abandoned his post and left us to fend for ourselves.
You had one job
Luckily the reaction subsided, but this entire ordeal, starting with me trying to get my medication, really made me realize just how much damage could be done when a neurologist isn’t on top of all his obligations. If I had to sum this all up into one phrase I would of course have to go with, “dude, you had one job. And you had 6 months to do it!”
All I know is this whole debacle shouldn’t even be a thing in the world of MS care. But evidently, it is. And the only ones who end up paying an actual price are those of us with the least amount of power but the most to lose in this situation.
Have you experienced any kind of delay in care like this? What did you do and how have you avoided it happening again? Let me know in the comments below!
Were you misdiagnosed with something else before receiving a MS diagnosis?