Here I go again- revolving door healthcare

Navigating doctor turnover as a rheumatology patient

That awkward moment when you are unable to take your own advice.  As a patient leader and health advocate, I often stress the importance of good doctor-patient relationships.  As patients we all need someone who listens and responds to our needs.  We need caregivers who help us understand our situation and navigate complex decisions.  As many of us are on dangerous treatments, we need doctors who are paying attention to our labs and respond quickly when necessary.  The better the relationship between doctor and patient the better the outcome will be.  Unfortunately, good doctors are hard to find and apparently even harder to keep.

Which is why, once again, my care is in the hands of a covering physician.  When I got the letter in October, letting me know my provider was leaving the practice, I was immediately nervous.  Losing a trusted member of my healthcare team leaves me feeling vulnerable.  I’m afraid of what might happen next.  Unfortunately, history shows that my fears are not irrational.  The number of times my healthcare has dropped through the cracks because my caregivers were just not on the ball is staggering.  The fact that I live every day with challenges created by lack of good care slams the point home.  Consistent competent care changes the progression of chronic autoinflammatory disease.  I know very well how important this is.  How being lax can lead to destruction.  I’ve already lost body parts to inadequate care; I promised myself that won’t happen again.  So, imagine my reaction when I recently discovered there won’t be a provider on staff at my rheumatology practice until September.  That’s 11 months without a consistent rheumatologist.  Something I would absolutely advise against.  Something I am unable to avoid myself.

The truth is, I’ve lost track of how many different rheumatologists I’ve had over the past decade.  Some I chose to stop seeing because they were not a good fit.  Most were lost because they left the area. I’ve had five since 2020 when my favorite rheumatologist made the move.  Two of those I never even met before they moved on.  Sadly, this has become the norm for health care in rural America.  Patients are left with a revolving door of traveling and temporary providers.  Rare are the medical professionals who decide to stay. 

In fact, the trend is so prominent, one of the reasons for choosing my primary care doctor was the fact that she was born here.  She has roots and family here; I know she plans to stick around.  Hers is by far my longest doctor-patient relationship.  Knowing she has my back is especially important in times like this, when the rug is pulled out from under my feet again. Someone needs to make sure none of the balls hit the floor.  Thankfully, she’s a great catcher. 

Unfortunately, she isn’t a rheumatologist.  She cannot manage my rheumatoid arthritis care, which means I’ve got to stay on top of it myself.  Being clear with my needs and following my own labs will be more important during this extended transition phase.  In my experience, temps don’t give great care.  Usually, a doctor who already has a full patient load elsewhere, I can completely understand why it happens.  Staying on top of things myself will hopefully keep me from sliding through the cracks in the shuffle.

Then of course, comes the next problem.  Who will my next rheumatologist be?  Do I get an MD or will it be a PA heading my care again?  Will they be on the ball?  Do they treat-to-target or just do the minimum maintenance?  Am I getting a great doctor or someone who wears the coat with none of the passion?  Will I be cared for?  Will I feel safe? Heard?  Believed?  Unfortunately, experience has taught me too often the answer is no. 

For now, all I can do is wait and hope.  Hope the transition time goes smoothly and a great new doctor joins my team soon.  Hope this doctor is the one who helps me find better disease management and gets me back on track.  Being in transition myself, trying a new medication, still waiting to see if it knocks things back enough, I’m admittedly more than a little nervous this may be the start of my next life challenge.  That this could turn into another thing I have to overcome to move forward.  That I’ve landed right back on start and will have to climb all those hills again. 

Has this happened to you?  How do you handle revolving door care in rural areas?