1. dvanleeu17
    April 25, 2017 @ 7:21 pm

    Yes, I’m sad to say it’s a common occurrence for patient input and knowledge is ignored and not appreciated.I work very hard as a person with a chronic illness to select the right team and build the relationship. It’s almost impossible when something acute happens. Sometimes it works when you have someone with you as an advocate, but that’s hit and miss as well. As a clinician, what do you suggest?


  2. Patrick Hennessey, MD
    April 24, 2017 @ 10:51 am

    Yeah…let me know how THAT works out for you. I am trying to get care for 2 rare diseases in supposedly a leading academic medical center. But care is fragmented, inefficient, and agonizingly slow. And even though I am a highly-trained physician w impressive credentials, 30 years’ experience (28 with my autoimmune/lupus-like condition), I frequently feel that my input and related history is ignored. Is this a common experience?


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