Staffing Issues: Does This Warrant a New Neurologist?
I have found myself in a new predicament, one that I am not totally sure how to deal with. I love my neurologist. He is great; I literally trust him with my life (like when deciding whether to start a new treatment or not), but… his staff just suuucks! Unless I have an actual appointment where I can talk to him face to face, it is nearly impossible to get through to him. For example, 4 weeks ago, I flew in from Colorado to see him because I was flaring up, and he wanted to see me immediately.
Getting hold of Acthar
When I saw him, he right away said that he wanted to start me on steroids or Acthar injections (an alternative to steroids for people who can’t tolerate them or no longer respond to them), and we opted for Acthar which is notoriously difficult to get because it is really expensive ($70,000 for 10 days) and entails a prior authorization battle, but I have never really had an issue in the past at his old clinic. So, he told his nurses several times that “Matt needs this STAT, put STAT on the order, he needs this STAT,” which I have never heard him say in the 5 years that I have been seeing him, so all I could think was, “Wow, forget two weeks, I am getting this in one!”
The squeaky wheel gets the oil
4 weeks later and… nothing. Since then, I have talked to the specialty pharmacy who said they are ready to go, they just need the prior authorization form. I have talked several times to my Acthar rep who said he has called my neurologist’s office several times. An Acthar rep had gone down there twice to try to make sure they knew how to fill out the form; he even called his supervisor to try to get him to go down there! Even still, the pharmacy was telling everyone, “Still no form.” Eventually, the pharmacy did get it, but... it was incomplete. My neurologist’s office didn’t fill out the entire form, so the pharmacy sent it back! I started calling my neurologist’s office every day and even leaving messages for the nurse in charge of this order. The squeaky wheel gets the oil, right? Ha!
This is not at all the first time this has happened; this is a regular thing now (since he opened this new office). It seems like every month I sit down at least once to make a 15-30 minute call trying to get a simple refill on a medication I have been on for years! For the longest time, I was calling every day to try to get my information updated in their system so that my labs would be released straight to me. Same thing, everything on my end was good, the lab said everything on their end was good, the only thing that was missing was the updated info from my neurologist’s office (info as in the correct spelling of my name and address). That was 2 years ago. I have since given up on trying to get my labs. I can’t tell you how many times a pharmacy has called me to tell me that they tried calling my neurologist’s office 3 times about a refill but couldn’t get anywhere, resulting in me recently finding a new doctor, making an appointment, going to that appointment, getting new prescriptions for those medications, updating my information with a new pharmacy, waiting for the prescriptions to be filled, picking them up, and still not hearing back from my neurologist’s office!
In the last couple of weeks, I have been feeling like this is borderline negligence, but then I thought, “Hold on, Matt, that’s a little dramatic.” But then I looked up the definition of negligence to see how far off I was: “Failure to take proper care in doing something,” “Failure to use reasonable care, resulting in damage or injury to another,” which may be different than what negligence means in the world of healthcare (I am not really sure) but wow! My neurologist stated that I need certain immediate care, and then his office has been dragging their feet and not doing their full job, not properly caring for me, and as a result, my MS is still flaring up and possibly getting worse as my vision is even starting to get more fuzzy! Also, keep in mind, I flew in from Colorado (to California) to make this appointment where he stated he wanted to start me on something. Now, at this point, for a few reasons, I am not going back, but they don’t know that. As far as they know, I have missed my return flight home because something that should have been done in 1-2 weeks is now in the 4-5 possibly 6-week range!
Should I move on?
So this is the predicament I am in. Of all the neurologists I have ever seen and ever met, I feel like mine is by far one of the smartest, most knowledgeable, and proactive neurologists in the MS community. He is always traveling the states, presenting research papers about MS that he has written and also giving speeches. Most of the time, when I go in to see him, he has some new abstract printed out for me that he wrote along with pictures of boards he is presenting somewhere. He has introduced me to medications that I had never even heard of and started me on treatments that other neurologists were too afraid to even talk about! Because of his total comfort of knowing which treatments I would be safe to try, when I first started seeing him it was only about 6 months before I transitioned from being wheelchair-bound to walking around Dublin, Ireland on my own and later, the totally-not-wheelchair-accessible streets of Slovakia.
Prevented from getting the care I need
But from the perspective of a patient, what good is any of that when I now have a medical staff who constantly drops the ball and prevents me from getting the care my neurologist is trying to give me? I had complaints about his previous staff, but the people at his new clinic make them look like clerical superheroes! His current staff has done a phenomenal job of (I assume) unintentionally sabotaging any clear communication between my neurologist and me, as well as throwing monkey wrenches in every single medical process they encounter (like me getting medication).
Out of options
So at this point, I feel like I am not even seeing anyone about my MS; there’s just a guy in a lab coat who I occasionally get to talk to about how I am doing. It’s really disappointing, and I can’t express how much I don’t want to start looking for a new neurologist, but what other options do I have? I feel like my health should be twice as “good” as it is now, but for the last couple of years, nothing has really been moving… so, should I move on? Should I move on to a new neurologist just because of my current neurologist’s staff? Usually, people say it’s time to find a new neurologist when they are no longer getting the care that they feel they should be getting, but never have I heard someone talk about how they needed a new neurologist simply because of staffing issues… I hate this.
Have you ever been in a similar (or the same) situation? How did you handle it? Share below!
How many specialists did you see before finding "The One"?