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Hi.

Welcome to my ramblings. We discuss MSA (multiple system atrophy), caregiving, and life dealing with a loved one with a debilitating disease.

Continuity of care? Not so much ...

Continuity of care? Not so much ...

Many years ago, when I worked in healthcare, continuity of care for our patients was #1. We coordinated the various visits between primary care and specialty care, being the “go between” between doctors, staff, and the ever UNpopular “god complex”.

Continuity of care is facilitated by a physician-led, team-based approach to health care. It reduces fragmentation of care and thus improves patient safety and quality of care.

So I looked back through old files and found a brochure from my former medical group. It read, “We strive to meet the needs of the whole patient, from care to emotional support, to the best of our ability.” I thought, “wow, I remember when we used to help coordinate the needs of complex patients” whether it was making a call to coordinate an office visit, procure a medical supply item, or help maneuver through a hospital billing. Physicians talked to patients, patients talked to nurses, nurses talked to specialists, and so on. What happened?

A few weeks ago, our neurologist was so concerned about the status of my husband’s health that he quickly coordinated with our primary physician (the perfect communicative relationship) a hospital stay. Over the next few hours, we were now dealing with congestive heart failure, in addition to his already diagnosed Multiple System Atrophy. Cardiac specialist, Hospitalist, nurses, Cardiac Failure specialist, speech therapy, blood work every day or so, swallow test, EKGs, ultrasounds, and on and on and on.

I remember the first frustrating moment … the doctors couldn’t commit to a time to come see us to discuss all of the issues we were dealing with. It literally was the “roll of the dice” when they would show up and unfortunately, if I wasn’t there, their barrage of information didn’t always stick in my husband’s head. He was either confused or so overwhelmed that he didn’t retain any of the information. Now, don’t get me wrong, the nursing staff was absolutely amazing, especially trying to adequately convey what was going on to both of us. I was told that if I missed the doctor, I could try to call their respective offices to speak with them.

Upon discharge, we were told what day and time to show up for a follow up with the cardiology office. When I called to see if another appointment was available (I was committed to teach the day of the appointment), I was flat out told, “No, keep your appointment”. Wait, customer service please? With my feathers all riled up and my knickers in a total wad, I proceeded to wait on hold for a supervisor for 40 minutes to try to get a different appointment. Being told “NO” again, I contacted our primary care physician who, within a day, was able to secure an appointment a day earlier. Perfect; was that so hard?

Why did it take me calling the primary care physician to call the cardiologist to make an exception or pull a string to get an appointment changed? Just wait, it gets better … (sigh)

And here I thought I had it in the bag

And here I thought I had it in the bag

A day in the life of a service dog

A day in the life of a service dog