Release the Hounds!

Release the Hounds!

One of my persistent complaints about being a chronic disease patient most of my life is the lack of coordination of my care. Looking back, I think my parents began training me from a young age to look out for myself and lead my own health care. As I child I remember my mom spending time on the phone coordinating appointments and sharing information between doctors.

We had a do-it-yourself approach to care, because we saw the problems when health care dropped off. I learned to ask questions and when the Internet became a research tool that was a terrific help. We could do our homework before appointments, so that we had all our questions prepared.

Now, more than 30 years later, I feel the lack of coordination between health care providers and insurer has only grown worse. I feel less like a patient than I do a messenger. I’m constantly conveying records and information between providers, trying to get everyone on the same page.

In just the last couple days I’ve spent a lot of time on the phone trying to solve a lapse in communication. My doctor ordered a new prescription, so I call the pharmacy to make sure they received it. They tell me they need authorization, so I circle back to the doctor’s office. Then a day later I call the insurance company: did they receive the paperwork they need from the doctor to permit authorization so that the pharmacy can fill the prescription? They have no idea, so the round of calls continues back to the pharmacy and then the doctor.

It’s enough to make my head spin! And I’m left wondering—when did it become my job to make sure that my providers and insurer do their jobs? When did the phone lines and emails between these entities stop working? Why can’t they talk to each other, get the job done without me releasing the hounds, and leave me out of it unless absolutely necessary?

Lucky for me, my husband is smart and persistent. He had to take on a lot of coordination for my health care when I had my latest illness, including a couple surgeries and hospital stays. The actual care was terrific and I am very happy to have excellent health insurance. However, the care coordination was absolutely lacking. We had a lot of work to communicate between health care providers. Then when I returned home, we had to manage planning for a smooth transition and setting up the care I would need at the house.

When you’re sick, you don’t feel well enough to worry about who’s talking to whom and if everyone is coordinating as they should. I am so thankful that my husband could fill that role and look out for me. He helped with medication issues, getting me needed nursing care, making sure that my doctors were informed, and so much more.

Now that I’m better, my health care needs are less acute. However, I’m back to managing my chronic health concerns. I find I have even less patience for the care coordination nonsense than before. Why can’t providers seem to talk to each other? Why has the digital communication revolution seemed to have missed the healthcare industry? Why can’t the insurer move actions forward without my constant vigilance? Why must these burdens fall to the patient, who already has enough on their plate to handle?

I take pride in the leadership role I have over my health. But I also believe I should be paid for all the time and agony of herding cats to get my care reasonably organized. Someone less ornery than me could find themselves in harm—delays in treatment, conflicts in medication or worse.

I should certainly be “in the know”, but I shouldn’t be the only one. After all, the phone lines go both ways. For once, I’d like to take a break and not have to release the hounds on my health care.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (4)
  • Patricia
    5 years ago

    When I’m diagnosed with anything, I research, ask questions, try to learn every thing I can about whatever it is. I know people who don’t, and I can’t understand that. After reading about your problems with coordination, I feel really lucky that my primary care dr. and my RA dr. communicate about me, by phone and computer and fax. They are in different towns, but they touch base all the time concerning my care. I dread when my primary care dr. retires; I’m afraid I won’t find another that good these days! He’s the right age to retire, but hasn’t mentioned plans to do so yet. I’m keeping fingers crossed!

  • Kelly Mack moderator author
    5 years ago

    John, I totally sympathize and am sorry for how you have to wait in pain for the care you need. This frustrates me down to my bones. Hope that the ‘blockages’ get resolved quickly so that you can start the injections. It is a full time job to be chasing after our health care, which I think is truly unfair on top of living with RA and working full time. One thing to consider about our health care system is the unrecognized costs of patients having to coordinate their own care and hound after doctors, insurers, etc–it takes time and money on our part that is not measured. Good luck to you. -Kelly

  • Kelly Mack moderator author
    5 years ago

    That’s terrific! Really great to hear a story about good coordination.

  • John
    5 years ago

    I identify with your experience entirely. Until I came down with RA I was very health and very active,therefore, I never paid too close attention to my health insurance and was unfamiliar with how to navigate the system. That changed in April 2013 for me, and I am still being frustrated by this lack of coordination.

    I have been on Humira and unfortunately it has not helped me very much. Last month my rheumatologist switched me to Cimzia. I had to get it through a different specialty pharmacy for my insurance to consider, and now three weeks later, my insurance still has not approved the prescription. I called my doctor’s office with yet another phone number connected to my insurance for them to call. The nurse said simply that it was always a process with the insurance companies.

    I have now missed my first scheduled injection, and as you say I do not feel well. I also have a full time job, and frankly it is difficult to deal with trying to stay on top of just getting approved for some medicine, work, and not feeling well either.

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