Large and In Charge: Building a Better MS Care Team
“What else is going on?” Matt, our family doctor of more than 15 years, asked. It was at the end of a mid-August appointment, one I’d made due to pain in my right shoulder, elbow, and hand. I wasn’t sure if it was related to MS or not, I just knew that it was getting really hard to use my right hand: pain was shooting through my elbow, and lifting my shoulder brought tears to my eyes.
The shoulder and elbow issues were relatively new. The hand issue wasn’t. I’ve been slowly losing capacity in my right hand for the last 18 months, dutifully reporting its diminishment to my neurologist at our biannual updates. But we had never really addressed it and I grew to assume that the hand — and appendage — was a goner, an MS casualty much like my right foot and leg, slowly becoming little more than a mean-spirited hanger-on that could no longer be trusted.
For some reason, I thought my neurologist and I were trying to win a bigger war and develop an approach that would deter the disease’s progression. But my symptoms only grew worse over this four-year effort, and if there was any type of bigger plan to address those issues (which now included my very sore arm), I wasn’t aware of it.
Which sort of made sense. I got into the MS game sideways, running through six neurologists over the course of a decade before finally receiving my diagnosis from lucky No. 7 in late 2013.
It took me a minute to fully understand that MS is a disease of the central nervous system (CNS). It took me far longer to understand that there is no single entry point to MS; longer still to realize that meant someone needed to corral, coordinate, and connect records and data and treatment between all of the doctors who might address the spectrum of issues a struggling CNS might present.
I knew Matt’s open-ended question was his way of inviting me to share any other problems he might help with.
“Yeah, there is something else,” I said, like a lawyer who knows the answer to a question before he asks it. “I’m not quite sure how to say this, but can you tell me who is supposed to be in charge of managing my MS? Because I don’t think it’s you.”
I wasn’t quite sure who that person was. But I had a guess.
The question hung in the air. Clearly, I had taken him by surprise. “I guess it’s probably you,” he said. I’m not sure which surprised me more — his frank response or the specter of being in charge of managing a multi-pronged, life-changing disease like MS. Of all the people involved in managing my disease, I was by far the least experienced. Plus, there’s the whole lack of medical education and all.
Less than a week later, while trying to schedule the EMG for my right arm ordered by a specialist Matt referred me to, I learned my neurologist was leaving his practice. The woman scheduling the appointment didn’t — or wouldn’t or couldn’t — say where he was going. I was supposed to receive a letter notifying me, or at least a phone call, and neither came. But my neurologist still had time to schedule an EMG with me, she said.
I wasn’t eager to take the EMG to begin with (who is?). Angry and shaking, I knew having the test administered by this neurologist was out of the question. “No thanks,” I answered and hung up the phone.
Normally I consider myself reasonably unflappable. Now, I felt fully and truly flapped. Not only was I in charge of an incredibly complex disease, but the one person who I thought had a handle on the main issues — namely the scars on my brain and spinal cord, and how they were slowly crippling me — was unexpectedly gone.
And then it dawned on me what this could mean.
Matt — our family doctor — is part of a physician’s network, a collaborative group of doctors “who, in exchange for higher patient volume, agree to reduced prices and other terms relating to cost control, such as utilization review and capitation.” These physicians may “be able to increase their incomes if they are jointly able to exercise market power through their networks.”
In other words, Matt had referred me to my soon-to-depart neurologist, at least in part, because he was part of a network that made Matt money, not necessarily because my neurologist was the best resource for me.
I, however, am not beholden to the network. And now I’m building a team of professionals around me based on their skills and talents, not how they get paid. It’s going to take some doing because it goes against the grain of an often inefficient, one-size-fits-all healthcare system that far prefers the financial rewards of doing business as usual.
But now I’m excited. Because for a moment, at least, I’m in charge and can build a team around me as it makes sense to me since I am in charge. And in the face of a disease steadfast in assuming control over so much of my life, that feels pretty damned good.
I’ll write soon about who makes the cut and why. Stay tuned.
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