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New Member - Question: are other members finding their GP apathic and uninterested?

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    New Member - Question: are other members finding their GP apathic and uninterested?

    Hello - I have an Acquired Brain Injury from Encephalitis (2006). I have deficits in memory, vision, hearing, motor skills and balance, However I am doing very well - I live independently, and was able to go back to work part-time ( now retired). I have been participating in an ABI Cognitive Rehab program since 2008 and really credit this program with all the amazing recovery I have made.

    Because of Covid , my regular check-ups were postponed for 2 years! Today I met with my general primary healthcare provider who has been following me for 5 years. I have rarely bothered her with the complex symptomology of my progressive neuro condition but today I needed a referral for neuro-ophthalmology exam as I have experienced significant and alarming changes. After this 2 year break I expected some small bit of conversation to re-establish our relationship - but that didn't happen at all. The doctor just stayed glued to her computer and typed and typed while I sat there.- when she finished she said " is that all?" I asked if we could talk a couple of minutes about this new health development as I really counted on her clear thinking- I said I understood that a neurology specialist would probably be taking on my case but what did SHE think ?- what information could she give me about how this would play out? This is what she said " it's about maintaining quality of life" and "making the best of the time left". WOW this was totally out of left field - and felt very dramatic and inappropriate . I asked what role did think she would have going forward - her reply was " flu shots, check-ups ; just regular health maintenance and sometimes getting referrals done". This wonderful energetic compassionate doctor as turned into this robot - is this COVID burn-out? This certainly is in MY top ten of ' the worst 15 minute appointment EVER' list. QUESTION what should I think about my primary Doctors behavior? Thank you

    #2
    Hmm. My guess is that your PCP was playing it safe, not wanting to poach on another doctor's "territory." Maybe she really knew almost nothing about your condition and didn't want to say that in so many words, and so she gave you several cookie-cutter responses.

    I have MS and the last two PCPs I've had have preferred for me to be "seen" by a neurologist regularly. I've found that just about any vaguely neurological issue I bring to the PCP is apt to get pigeonholed as something the neuro should look into, and I get referred on.

    It's a nuisance for me because it means yet another appointment to set up and get to but apparently some doctors are eager to pass us along to other doctors. Sad but true.

    Since you've had this doctor for 5 years, if you have no other problems with her skills, wouldn't changing doctors be difficult? I'm saying that I don't see getting so troubled by this that you consider changing doctors. Doctors are often very cautious about stepping on one another's toes. They want to keep their standing in the medical community. I think your doctor was just being a typical doctor--not wanting to go out on a limb.
    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

    Comment


      #3
      ((((((bastien)))))) ~

      TO BRAINTALK!

      I agree with agate. PCPs are general practitioners, who have to refer patients to specialists, because their knowledge is limited in those fields. Your PCP's role on your health care team is as she described. She might order blood work or tests and then send you to a specialist based upon the results. But, she can't predict what a neuro ophthalmologist might detect upon examination. She also doesn't want to speculate, which might upset you or be absolutely incorrect.

      As for her bedside manner, I agree with you that she may be experiencing burn out. Perhaps she has lost several patients to COVID, or lost friends or family members to it. Or lost loved ones, who couldn't get the care they needed for other medical issues, because COVID was on the front burner.

      I remember spending weeks and months in ICU with my children, amazed at how doctors, nurses, therapists, and all staff worked tirelessly to care for their patients. I saw what they saw, and my heart was broken for their patients, their patients' families, and for them. I've seen them weeping and hugging each other after they lost a patient. I wept with them and hugged them, even though I didn't know the person for whom they were grieving. When Michael's time came, they wept and hugged me.

      We need to remember the stress they experience every single day and how many people they treat. We need to remember that they are human, and they feel pain. We need to remember that they put their lives on the line every day during this pandemic to save lives and to help us.

      I'm sure that your PCP didn't intend to offend you. She may just be so frustrated by COVID that she feels helpless. Doctors do feel that way more often than we would think. I know, because they have told me that many times.

      When so many people have died from COVID, I think your PCP is right that we all have to think about quality of life and making the most of every day we have here. That was the motto of our family, and we defied the odds many times.

      I hope that you will have a caring neuro ophthalmologist, who will determine the cause of these changes and provide you with an effective remedy.

      Love & Light,

      ❤️❤️❤️❤️

      Rose

      *Virtual Hugs Are Germ-Free!


      THANKS!
      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

      Comment


        #4
        Thank for responding and giving me some outside perspective and experience. I am glad I wrote in because it gave me a chance to think through my feelings and thoughts regarding my PG visit. But this is what I am thinking now - my veterinarian was a wonderful kind and compassionate man who took time to explain what was going on with my cat - especially has she was approaching the end of her life. I felt supported by my vet and his office and trusted him to do the best for my cat He actually cried when telling me she was dying. For myself, I along decided NOT to accept apathetic, dismissive or rude medical staff behavior as okay. I would not accept that for my cat ! so why in the world would I accept that for myself. I have been in the journey of a person with a rare disease for 17 years and the most important lesson I probably have learned is to live today , this day , with kindness and compassion.

        Comment


          #5
          ((((((bastien)))))) ~

          You described your PCP as a "wonderful energetic compassionate doctor," based upon your prior experience with her. Two years later, her demeanor has changed significantly. You asked whether her change correlated to COVID. I think the answer to that is affirmative.

          No one should be subjected or required to tolerate rude, insensitive treatment from a physician or any other health care providers. I have met far too many physicians, who treated my children, my husband and me with disrespect. Our solution was to find another physician. I always made it clear to hospital nurses that Dr. X, Y or Z was not allowed to step foot in my son's room. The nurses all understood, because they knew that these physicians were hard-edged.

          Unfortunately, in Jon's last hospitalization, the only intensivist on duty was one, who had treated us poorly in the past. I had no choice. The nurses had a chat with this doctor about his interactions with me, and he softened his tone and approach with them present. Over the next two weeks, this doctor changed drastically, and by the time Jon was discharged, the doctor was charming and making jokes with me.

          COVID has changed everyone. We are all stressed over it and feeling cloistered and wondering what will happen next. I cannot imagine how health care providers and first responders must feel enduring all that they have through the pandemic. It's akin to firefighters, who save other people's homes, while their own homes burn to the ground.

          I suggest that you set this experience aside and focus on your neuro ophthalmologist appointment, where you will have a specialist, who will know how to help you, where your PCP doesn't, because it is beyond her capacity as a general practitioner. If she fails to make the referral or to provide you with any other medical care/needs, then you will have to pursue that with her or find another PCP.

          Stay strong and positive. Send kindness and compassion to your PCP, as she may be going through a difficult time in her life too.

          Love & Light,

          ❤️❤️❤️❤️

          Rose

          *Virtual Hugs Are Germ-Free!


          THANKS!


          Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

          Comment

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