February 29, 2008

Something Bubbling Beneath...Physician Frustration!


I know I promised not to get medical on this blog... We each have enough of that in our lives! Still, after writing for a time, I begin to notice that even as I try to write without medicalized references, I am still doing it! I am amazed at the pervasiveness of it and apologize if this has let anyone down.

Still, I mean to point out that there is a subject which bubbles just beneath the surface of our communication with each other: physician frustration, I'll call it. Frustration with the attitude some doctors have towards people with epilepsy. It can include outdated information on epilepsy, bias, or the attitude that unless an individual suffers convulsions, it isn't E.. If a medical professional can't keep up on current information with regards to epilepsy, how can we expect the general population to know the truth about the disorder?

A study of patient attitudes performed at UCLA, concluded:
Patients with intractable epilepsy communicated frustration with their continued disability despite trials of new medications. Their perceptions of the risks of the surgical treatment of epilepsy were exaggerated. Patients felt that their health care providers did not provide adequate information about epilepsy and portrayed epilepsy surgery negatively.

I'd say that's about right. I'd also comment that the education gap frequently leave persons with E. knowing more on the subject of their own illness than the doctors they see. When this is multiplied by ignorance on the part of insurers, the care we need is often denied to us.

My own internist, the one in charge of my general care and the one who reports to my insurers, told me on one of my latest office visits that I might be focused too much on my E.

Her goal at the time was to get me to start taking a statin for my cholesterol. She said that I might be focusing too much on the E. and not enough on a condition that could kill me (the cholesterol). I have to admit I am considering finding a new internist... one with better insight into E.. Apparently, she isn't listening to anything I have to tell her about E. and she hasn't kept abreast of research on E. either. And clearly, she is blissfully unaware of SUDEP...

Now, my insurers are a wholly different matter. In an effort to contain costs, they seem willfully disinterested in allowing the tests and doctor visits with specialists necessary for the maintenance of my condition. When I pushed to know why I was denied, I discovered that the individual making the decisions about my care was a former OB/GYN nurse. At least she was a nurse, right?

In some cases, the individual deciding whether or not to grant referrals for care is a kid, just out of college, whose only reference is a set of company policy manuals.

It can be fatiguing, this consistent struggle for care.

When I began experiencing "new" activity, recently, coupled with the beginnings of depression, I felt it was an urgent situation that required the attention of a specialist in E. My insurer disagreed. It was like moving a mountain to finally get an approval for a visit with an epileptoligist, and in the end, the insurer refused to pay their part. Fortunately, the urgent appearance of new symptoms was corrected by an alteration in my meds and I have been good since, but I was very unhappy with the insurance outcome.

I know I am not the only person struggling with this kind of situation, or if I am, someone please let me know how to rectify it!?



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