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What Improves My Healthcare Experience.

What would improve the healthcare experience for me, as a patient with multiple health conditions?  I’m glad you asked.  (You did actually ask, right?)  A few things would help move things forward.  Here’s a thought-purging because I happened to have coffee:

Billing processes that make sense.  For example, I received a refund for mail order pharmacy overpayment in the same week I received a collection notice for the same account.  I had overpaid because their receivables system wasn’t as fast as their billing system, which flagged my account for collections when in fact I was ahead of the game.  If the billing system was synced properly with the accounts receivable system, they would have known I was in the black, not in the red.  But thanks for sending all those letters telling me I wouldn’t receive any more insulin shipments unless I paid the (not due) balance.  Fuckers.  (Also, get paid for things that make sense.  A test to diagnose me with type 1 diabetes twenty-nine years after my type 1 diabetes diagnosis is ridiculous, but required by my insurance company.  What a waste of resources.  Spoiler alert:  I have type 1 diabetes.)

Everyone be on time.  Simple, right?  If my appointment is at 10 am, I show up no later than 9.45 am, usually 9.30 am.  I’m afraid of being late.  But the HCP showing up at 10:15, 10:30 … 11 am is fine because their schedule takes precedence over mine?  I understand being late from time to time, but a 10 am appointment should not linger well into lunch time.  I like lunch too much to miss it.

Make getting paid easier.  My doctors should be paid for what they do.  If they review my CGM data, there should be a billing code that pays them for that review.  If they (by the grace of some fancy god) are able to email me, they should be paid for sending that email.  Their medical expertise is hard-earned and should be properly appreciated.  To that same end, my insurance company should pay out (incentivize!) proactive care instead of reacting to chaos.  My parents should not have had to battle for more than three test strips per day for me when I was a kid.  Checking my blood sugar should be fully covered, as it’s an investment in keeping me healthy.  Pay to keep my body whole, don’t start paying once it starts falling apart.

Don’t let money drive.  Twice in the last three months, I’ve had to make appointments with new care providers and the very, very first question out of the receptionist’s mouth is, “What insurance do you have?”  This is immediately after, “Hello?”  I would guess that this is in effort to streamline the phone tree (and triage) process, but you don’t even know why I’m calling.  And you have no idea what I can and cannot pay for.  Asking if you’ll be paid before asking if I’m okay puts financial needs in the driver’s seat … yet another driver, with the patient tied up in the trunk.

Treat me where I am.  If I come into my GP’s office with an issue that applies to their primary care practice but they consider it a diabetes-related issue and they refer me back to my endo in order to receive care, that’s crap. Treat the patient where they are.  Ask about and then make the mental health referral in my endo’s office, please.  Don’t turn me away if I come to my PCP with a diabetes need.  Sometimes it’s difficult to get time off to go to the appointment, and having the issue not even addressed because it’s deemed out of scope makes it that much harder for me, as a patient, to coordinate care.

Integrate the shit out of things.  My A1C should be sent by my endo to my primary care doctor’s office.  My pregnancy file should be sent from the high risk maternal fetal medicine office that delivered Birdy to my “regular” OB/GYN here in Rhode Island.  (Why am I still tracking that information down, almost six years later?)  My dental records should be on file at my PCP’s office.  Any visit with a mental health professional should be documented and sent to my PCP and my endo.  I’m not asking my medical teams to start a softball team, but it would be good if my information flowed in a predictable and useful way.  Instead, I have this weird folding file of information and lab work and notes in my phone, creating a patchwork quilt of my medical information that’s a little threadbare.  It would be great if EMRs (or EHRs or EMFs) actually worked for me, and for my medical team.  Otherwise, they become another tool that keeps my medical team from making eye contact with me and I’m still dragging around that folding file.

Life with chronic illness has taught me that the medical system is gross and broken.  This isn’t a hard and fast fact (see also:  you are reading this on the Internet, therefore consume with grains of metaphorical salt) but anecdotal experiences eventually harden into truth.

And that truth is my life with diabetes.

15 Comments Post a comment
  1. If I could just get my doctors to communicate with each other I would dance in the street! Since that’s not going to happen, I wish I could just get the patient portals communicate.

    01/26/16; 12:19 pm
  2. Tim #

    This year it will cost $98 for insulin every time I get it for my son. That is about once a month and that is with insurance. I quit buying testing strips through the pharmacy because it was cheaper to get them through I could pay $81 a month for strips with insurance or $63 dollars a month if I just buy them with no insurance. I guess I really do not understand why I can buy them cheaper without insurance? Insurance is paying less every year for those not on Obamacare.

    I was on the dads battling diabetes forum on Facebook recently only to find out that I have to pay $231 for my son each month for the sensor and $501 for the transmitter every six months for Dexcom supplies while Obamacare pays for all of it no charge. Diabetes has gotten expensive this year. I even dropped to the lowest deductible health care program at my work thinking that would help. Time will tell since it is so early in the year. The way I am going I should make his deductible in about three months.

    My son was also recently diagnosed with ADHD so now I also get to pay $125 a month for those pills. I work to pay insurance companies and drug companies. I am told that I make too much money to get help. I do worry how my son is going to live when he gets older. Diabetes, Celiac and ADHD. That adds up to over $500 out of pocket with insurance.


    01/26/16; 1:47 pm
  3. Nancy #

    Brilliantly written – thank you. I’m so sorry that you and millions of others have to deal with this chaos.

    01/26/16; 4:28 pm
  4. Kelsey #

    Very well said. Just last week I cancelled a dietician appointment because I was too busy to make the trek out to their office on a Friday afternoon. I confirmed with the receptionist that I cannot meet with the dietician and my endo (in the same office) on the same day because of insurance billing issues. Whatever. I’m just not going to see a dietician then. I know how to eat, after 23 years of diabetes, though I’d appreciate the chance to pick a dietician’s brain, if I could do it conveniently on the same day I’m trekking out to the endo’s office. I’m not sure who’s to blame – the insurance company or my healthcare company, but I suspect it’s a combination of both. Who ultimately suffers? The patient.

    I appreciate all the work you do to advocate for us, Kerri. 🙂

    01/26/16; 4:44 pm
  5. Kerri you’re right, the system is broken. When your health care “team” doesn’t communicate with each other it’s apparently expecting far too much to want the results of an eye exam to be available to both gp and endo and in regard to insurance coverage, steel yourself for dealing with Medicare.

    01/26/16; 10:46 pm
  6. Not to make light of it, but re: your folding file…I had a mental image of you with a Trapper Keeper and unicorn stickers (farting glitter of course!) 🙂

    I’m lucky to have a PCP who’s in a small enough clinic system that my lady stuff and my diabetes stuff all goes in my EHR. The eyeball doctor sends his yearly note and she checks with my dentist occasionally – fortunately no issues in either part of my anatomy require much follow up (touch wood).

    But the insurance companies? Hallelujah! And I don’t want to start on how hard it’s been to find an endo who doesn’t want to start with ‘basics’ that I’m 33 years beyond. A CDE is an impossible dream. The last one I met with lectured me about type 2 – I actually walked out of the appointment early. (No offense to the CDE universe, but her lack of t1 knowledge was simply a complete waste of my time. And yes, I had notified the office well in advance that I wasn’t t2.)

    What irks me are the prejudgments of health care providers who blame the patient for that 234 at 3am without knowing why. Or even bothering to ask. It’s not like we’re all sitting around eating candy and blowing off our care – the frustration on days when you do everything right, only to feel like you’re injecting water/thin air is the worst thing about this disease. And we’re all doing the best we can with a treatment (injected insulin) that hasn’t advanced in the basics beyond zero day in 1922. It’s hard to feel like they really care about their diabetic patients with such bad attitudes straight out of the gate. /rant

    01/27/16; 9:43 am
  7. Leah #

    As a nurse practitioner, I both represent and agree with everything you said! I try to do my best for my patients–I share info with their primary care, prescribe meds while being aware of co-pays, provide my email to spare them dealing with the phone tree. And yet, it’s still not enough. I can’t fix the healthcare system single-handedly.

    As a patient myself, I have the same gripes. I routinely wait 45+ minutes at Joslin, pay $100 for a one-month supply of insulin, and spend a lot of time tracking down results to share because my doctors don’t know how.

    I don’t know if a fix is possible–there’s just too many variables. We can keep hoping and prodding our providers to do their best.

    01/27/16; 1:06 pm
  8. Agreed on all counts!

    It is impossibly challenging to me that, even with EMRs, I went back to a system a few months ago and everything they had on-file was from 5+ years ago and incomplete. Another EMR only gets updated for patient viewing if I call to request that the latest labs are shared. And none of them talk to each other so I’ve got logins all over the place.

    Thank goodness I keep my own files, but anytime the medical profession wants to join me in the 21st century they’ll be welcome!

    (Not to mention, just reviewed some recent EOBs and my insurance paid a CRAZY amount for my endo’s office to test my bloodsugar…plus a separate billing and an event CRAZIER amount to “disclose the results.” Ummm, I have a CGM for a reason!)

    01/27/16; 1:38 pm
  9. Sandy T #

    I have to agree, dealing with the doctors and insurance can be frustrating. I just recently dealt with my pump supplier. The CSR I spoke with kept telling me that my insurance didn’t pay for my pump supplies, though they did (after hours on the phone by me and my doctor) and that the last order went through without a hitch. That woman caused me so much stress for no reason. I called back, spoke to someone else and he had it done in minutes. No problems. I realize the first CSR was trying to make sure I didn’t have to pay out of pocket for my supplies, but if she had just looked at the latest results it wouldn’t have been an issue.
    Another thing that frustrates me is investigating insurance when I’m looking for new jobs. Not taking a job because the insurance is so bad shouldn’t be a concern. But I have turned down multiple jobs because the insurance is so bad. Just another thing be frustrated about.
    I love what you write, and that you let us vent as well. Thank you! It’s nice knowing we aren’t alone!

    01/28/16; 10:37 am
  10. Amy #

    This is all true! It is a wild ride – I pay $235/mo for insulin. But my pump, meter and dex supplies are covered at 100% all year long. I think I come out ahead, but combined with my Obamacare premium I have $585 right off the top each month in expenses. This doesn’t include the synthroid and prophylactic Lipitor. My deductible is 4K.

    The one big difference I do have is that my healthcare system (The Cleveland Clinic) is incredibly integrated and seamless. The only downside is that my provider spends a lot of time looking at the screen and typing, and less time just conversing.

    01/28/16; 11:23 am
  11. Karen Rideout #

    Thank you for writing about all my frustrations with the Healthcare system. I have been working in the healthcare industry for over 18 years and I am amaze about the poor decision insurance companies made every year. They like to promote prevention; they have nurses call you to find out how is your AIC doing but yet subject meter strips and pump supplies to $1,500.00 deductibles. Do your call this prevention? Another good example is that I have been using Humalog for the past three years I have been insured with BlueCross. In January I got a letter from them informing me that effective January 1, 2016 Humalog requires pre authorization. Seriously?? After three years insured with your company with a diagnosis of diabetes type 1, do you really need to review my case to determine medical necessity?? In my opinion this doesn’t make any sense, may delay the patient care and is a waste of time for my endocrinologist, the pharmacy and BlueCross.

    02/2/16; 6:36 pm
  12. Hi! Thank you for sharing your experience.

    02/8/16; 12:04 am

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  1. Around the Diabetes Blogosphere: Hello, 2016 Edition – Diabetes Bit
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  3. Diabetes Blog Week: The Healthcare Experience. | Six Until Me - diabetes blog

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