What’s the most frustrating part of your Condition? Show your Support by Sharing this Story!
I’ll always be a hospital administrator, and that means I think about sustaining the organization. This is the top goal for me because it is the starting point for ensuring that patients get the best care possible. My experience last year taught me exactly how not listening to patients, part of the communication process, leads to a leakage of business for physicians, hospitals and other community providers.
In previous blog posts, I’ve provided examples of how I, as a patient, wasn’t heard by my local physicians. This ultimately led to me seeking treatment in Los Angeles – two to four hours away, depending upon traffic. My post today will highlight the outcomes and their impact on the local healthcare community. Never mind the added cost to my family.
As a reminder, here are a couple of relevant experiences:
I began strongly advocating for myself when my condition worsened, and my neurologist didn’t seem to be looking beyond his diagnosis of Idiopathic Peripheral Neuropathy. The word idiopathic means “unknown cause” and is a catchall for everything that may have caused the condition. While it is a good temporary diagnosis, patients should continue to work with their physician to identify the underlying cause(s). He later admitted, he was most concerned about ruling out Multiple Sclerosis, a tumor, and other more “common” diseases.
My condition progressively got worse, and my primary care physician wasn’t interested in seeing me – probably assuming I was in good hands with the neurologist – a specialist.
I started looking for a new primary care physician, but couldn’t seem to find one accepting new patients. Around the same time, I learned of a second opinion service offered by my husband’s employer. Mayo Clinic and Tufts University neurologists both agreed on my suspected condition upon reviewing my case, and they recommended I seek treatment with a neuromuscular specialist – the one associated with an academic medical center.
A few weeks before receiving the report from the physicians reviewing my case as a second opinion, I settled on the diagnosis of Guillain Barre Syndrome after researching and consulting with Dr. Google. Given that I couldn’t find a local physician to help me, I took the Mayo and Tufts doctors up on their suggestion and contacted UCLA, so here is the leakage of revenue out of the local healthcare market.
Read more: My Journey to a Guillain Barre Syndrome Delayed Diagnosis
Revenue for professional services associated with my treating physician and the other physicians who are consulted including anesthesiology, radiology and pathology Ancillary service and testing revenue including, labs, EMGs, hand physical therapy and pharmacy outpatient charges for a lumbar puncture and monthly infusion therapy, and now every three weeks, for at least one year.
All of this care is currently provided by UCLA Health, a pharmacy and home infusion company all based in Los Angeles. They are the ones being reimbursed hundreds of thousands of dollars. I suspect my local community would probably say they have the capacity to accommodate my treatment needs if asked. But, why at this point, would a patient ask when no one listened, and it took 7 1/2 months to get a diagnosis.
I did see a local infectious disease physician to rule out Lyme Disease and have recently returned to regular physical therapy in the local community with a provider I had used previously. But, these are very tiny fish in the big expensive ocean of what is my treatment plan and its cost.
So, listen to patients when they say they are getting worse. Bring them back in if weeks and/or months have gone by to reassess and talk specifically about the changes in their symptoms and/or functional limitations. If you have ruled out more common conditions, think about the less common possibilities and do some more testing.
Don’t assume the specialist is taking care of the patient’s needs. If you are the primary care physician, and the health literate, normally healthy patient is calling to say they are getting worse and that they are constantly falling, don’t assume the “specialist” is giving the patient all of the care necessary. You are the quarterback of the patient’s health care team and may have to do some intervening on the patient’s behalf.
And finally, don’t ever have an office person tell the patient who is at their physical and emotional lowest, “let me see if the doctor wants to see you” and then never call that patient back even to say no – the doctor doesn’t want to see you. Communication is the top reason, by far, for medical malpractice lawsuits. It is also a prime contributor to medical errors and delays in diagnosis.
What is truly ironic about this situation is that I’ve never had an opportunity to really work locally, no matter how much I tried. And, when I need my local healthcare delivery system the most, it doesn’t avail itself to me even when I’m begging for health professionals to listen to me – healthcare professional.
