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Medical Merry-Go-Round

Anyone who has been to a Dr for any reason, but particularly for those of us with multiple chronic medical conditions, you know how frustrating the medical system can be. Now, this is not intended to be a “let’s bag on all Dr’s” session. There ARE some great, caring Dr’s out there and I was fortunate enough to have one of them as my PCP for over 13 years (Dr. Nathalie Majorek, take a bow!).

Where the system as a whole breaks down is when you need to see multiple providers, and the total lack of cohesive communication between them. I took it for granted that when I was referred to a specialist through my PCP, the information was immediately shared between the different providers. Through my own experiences, and that of a close family member fighting Cancer (this will be for a later episode), I was horrified to discover this was not true. This is not only mind-blowing, but extremely dangerous.

The breakdown in communication is not just limited to “provider to provider” either. When’s the last time you’ve had to contact your Primary Doctor’s office? It’s either instant voicemail, or several minutes of KENNY G! So, you leave your message and several hours later (I swear they have” Homeland Security level” monitoring devices to know the precise moment you will not be able to get your phone!) they finally call you back. PHONE TAG…YOU’RE IT! I mean, who doesn’t love a good game of phone tag, right?

O.K., so you finally get “Susie Sunshine” on the line to book your appointment. You show up 10 mins early like a good little doobie, just to wait in the uncomfortable waiting room with all the other walking germs. 30-45 mins later they call your name and you feel like you’ve won the lottery! YES! THAT’S ME! Looking around at all the other fools in the waiting room all smug, “ME! That’s right, they called ME”….maniacal laugh.

The Dr finally enters the room, looking stressed out and hurried. You go through your array of symptoms and 10 mins later, leave with a prescription or two and a referral to a specialist. Of course, you’ve forgotten the 10 questions you wanted to ask and walk away like, “OK, there’s an hour of my life I’m never getting back.”

Now you get to start this whole process over again with the specialists office. YAY!!! Call, voicemail, office calls back (when you’re in the shower), rinse and repeat.

Skipping ahead to your specialist appointment. “So, tell me what brings you here?” You go through everything again with this Dr (cuz I don’t know about you, but I absolutely LOVE repeating myself). The specialist decides you need further testing, whether it be blood testing, XRay, MRI, you get the gist.

Guess what? You get to call and make that appointment now too! Second verse, same as the first. Skipping ahead to your actually testing appointment (you’re welcome)….you’ve had your blood work done and now it’s time for the follow up. Do I really need to say what comes next? Yessssss, our favorite game….phone tag! Oh, this time it’s a REAL treat because not only does your specialist want to see you back for a follow up, but your PCP too! Are we having fun yet!?

After following up with your specialist, a month or so later you follow up with the PCP. Again, since you get the idea about call, voicemail, return voicemail, wait, wait and wait some more, I will once again skip ahead. So, you’re sitting on the exam table and the Dr walks in. “So, how did it go with the specialist”? Seriously, they didn’t forward all that info to you? My initial exam, testing, follow up…nothing???? What’s that, you would like to see the lab results? Why no, I did not bring them with me but sure, I’d be happy to contact them again (call, hold, voicemail, return voicemail….tag!).

Wouldn’t it be great if there was an “all-in-one” way to make this exhausting process easier for us? Each of your providers offices may have a patient portal where you can look at some of your medical records, you may eve be able to schedule an appointment, but they do not communicate with any of your other providers, so not much of a help…bummer!

We need a way to sign on to ONE system, be able to contact ALL our providers. I sign on, check out my PCP schedule and book it online myself (good byeeee Susie Sunshine & phone tag!). I see my specialist, who I also invite to my portal who can then *gasp* instantly update my portal with my appointment info and test results. If I have a question for any or all my providers, sign in and send a secure message (again, goodbye voicemail!).

Sound like a pipe dream? It doesn’t necessarily have to be so. Patient engagement is finally becoming the new “it thing” in social media circles. We, as patients, need to bring it into the Dr’s office as well. Dr’s are a tough group and seem resistant to anything that smacks of social media. It is up to US as patients to take charge and get all “up in their grill” about it. Start the dialogue with your Dr’s, let your voices be heard.

Sincerely,

The Frustrated Patient.

  1. Hi Frustrated Patient,

    Thank you for sharing your thoughts with us. I see a doctor who is part of a larger group who does have a system similar to what you describe. I think as doctors become paperless, which is a time consuming process, we will see more of the patient engagement you described.

    Nancy

    1. Hi Nancy,

      Thanks for the feed back. I was curious, do you know
      if the communication is just between the providers
      within that group, or would it allow for shared
      communication with another provider who may
      not be in their particular group?

      Thanks

      1. Hi Cinsabrat,

        Do you mean an outside provider who isn't associated with that group? I think only if you've signed the HIPAA document allowing your medical records to be shared with them. Here is a post written by Diana Lee who is a lawyer and familiar with this; https://migraine.com/blog/hipaa-basics-for-migraine-patients-what-are-your-rights/.

        Is that helpful?

        Nancy

    2. I have found a gold mine!!!! And I came upon it by total accident !!!

      Please everyone...do yourself a favor and go to amazon.com and look for the book entitled The Migraine Miracle, A Sugar-Free,Gluten Free,Ancestral Diet to Reduce Inflammation and Relieve Your Headaches for Good by Josh Turknett, MD

      I had my first appointment with Dr. Turknett this morning (it just so happens he's in the Atlanta area, Decatur, Georgia to be specific.) Dr. Turknett is a board certified neurologist and clinical researcher in the areas of migraine, stroke, Alzheimer's disease, and Parkinson's ....the best part Dr. Turknett USED to suffer from migraine. I use the word USED TO...past tense because through his research and finding what foods our ancestors ate and the horrific additives, etc. in foods today...going back to the basics...ridding of sugar and gluten...because many know gluten free usually means lots more sugar and tons of carbs. His 21 day meal plan will get you on your path to becoming migraine free. It worked for him and short of trying any more dumb medications ..I've decided to follow a fellow migraineur who found what to take out of his diet and what to add and this led him to less and less migraine days until now he is migraine free. I didn't think to ask how long this took, but by my next appointment on June 10, 2014 I feel confident enough to believe I will be at least 50% better! hopefully more as I've already begun lowering my carb intake and taking away sugar and anything white, ie, flour, rice, potatoes, bread ...and along with flour Dr. Turknett includes wheat, barley and rye...it will take discipline....but I can honestly say in 38 years I've tried everything...of course I can't mean EVERYTHING, but my husband thinks so and Dr. Turknett says the fact that I was detoxed off all meds 2 years ago makes this an easier transition. So I keep feverfew 100mg and riboflavin 400mg...so off to make my grocery list ...and there's foods on there I haven't eaten in 38 years....I will let you know how it goes. Maybe God brought me to Georgia for Dr. Turknett and our first grandchild was the bonus ...I'm willing to take this leap of faith. My food list is so small now...with a 21 day meal plan in the book there are plenty foods to eat and the RIGHT foods.

      I ask all of you...check out Josh Turknett's book.....you have absolutely nothing to lose and gain migraine free days. I'll keep you informed.

      Today I feel blessed.

      Janet Jones

      1. Hi Janet,

        Thank you for sharing that information with us. It is true that there may be a link between gluten and migraine. You can read more about gluten and migraine in these links; https://migraine.com/blog/gluten-sensitivity-and-migraines/ and https://migraine.com/blog/gluten-and-migraine-is-there-a-link/.

        Nancy

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