If there’s one thing that makes my blood boil, it’s having my time wasted. I only have so much, and I waste enough of it myself that I really can’t afford to lose any to others’ incompetence.
Unfortunately, one of many frustrations that come with a chronic illness is wasted time. Managing celiac disease takes a fairly large toll on your time in the form of food research and preparation—though that’s, arguably, time valuably spent rather than wasted. Far more annoying, really, is dealing with doctors.
Oh, shut up.
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I, for example, have an HMO (health maintenance organization) insurance plan. The main difference between that and a PPO (preferred provider organization) plan is having to be referred by a primary care physician (PCP) in order to see a specialist. Even a specialist specializing in the chronic condition I will have for the rest of my life.
Researchers have actually felt the need—and gotten funding—to study the benefits of long-term follow-up care for celiac disease patients. Turns out (surprise!) it’s good for us. (See, e.g., this article in the Canada Journal of Gastroenterology.)
Judging from that, for the rest of my life, or at least the next few years, I should see a celiac disease specialist now and again. So can’t I just have a standing referral?
No.
Instead, before I can see my gastroenterologist to try to find out why I still feel crappy after over a year of being as carefully gluten-free as can be, I have to:
- call my PCP’s office
- wait on hold
- talk with a receptionist who seems determined not to understand what I’m asking for or help me to get it
- wait nearly a week for a return phone call
- follow up myself
- learn they need me to supply the doctor’s ID number (whether they were planning to ever, oh, call me for that information, or why they couldn’t ask me for it the first time I called, I do not know)
- tell them the ID number
- be advised to see my primary care doctor about whether I need to see the specialist
- snap that I have a chronic condition that my doctor already knows about
- feel bad for losing my temper
- agree to wait several days more for them to put through the referral
- and then and only then, finally, make the appointment with the specialist I already saw a year ago, who we all know I need to see.
I understand Oxford wants me to get referrals rather than run around willy-nilly to specialists and expect insurance to pay for it. They don’t trust me to know who to see, and why should they? Most people are idiots, and I haven’t proven to them that I’m not.
But wouldn’t it be nice if I could?
Look, I’ve been SAT tutoring for a while now, and if there’s one thing SAT tutoring will do, it’s turn everyone involved off of standardized tests. But some tests are necessary proving grounds or barriers to entry. No one wants people behind the wheel who haven’t passed a driving test, right?
So what if there were a test for basic medical common sense? Since “the prevailing ethical mantra in medicine” is supposedly patient autonomy (scoff), we could call it the PAT (Patient Autonomy Test). Those who passed could be trusted to refer themselves to specialists.
Insurance companies should be on board with this—after all, if I wind up needing to see a specialist, they lose money by making me see another doctor first to get the go-ahead. With the PAT, we all save money (and time).
Questions might include:
What kind of doctor should you see if you have a lifelong disease primarily affecting your gastrointestinal tract?
a) a gastroenterologist
b) a podiatrist
c) a cardiologist
d) none of the above
In your opinion, specialists and specialized medical tests and procedures are:
a) fun toys to enjoy at a whim
b) resources to turn to under specific, necessary circumstances
c) both
Are you:
a) a child
b) an adult capable of rational thought
c) a complete idiot
d) really struggling with these test questions
A quick reading comprehension portion on a passage describing recommended follow-up care for a specific condition could come next. And then a section on triangles, because—as my SAT students could tell you—that’s stuff we all really need to know.
Don’t make any stray marks, now.
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What time wasters get your blood pressure up? And do you daydream about patient autonomy, too?
Based on a Sprue Story 
I couldn’t agree more on this! Where I live, in Norway, one always needs to see a primary care physician before getting a referral to a specialist. And once you get the referral you will probably have to wait at least three months before you actually see the specialist.
I feel your frustration, I really do. I have had a CD diagnosis and thus been strictly GF for 2,5 years and still feel like shit. I´m waiting for an appointment with an endocrinologist in three weeks to check for other autoimmune stuff/thyroid problems.
Have you been checked for related autoimmune diseases etc?
I’m sorry to hear you feel my pain! 😦 I’ve been checked out for other autoimmune issues and none of the tests have come back positive. The only one that ever did was a small intestine bacterial overgrowth test, and a round of antibiotics after that did seem to help a bit, but no especially impressive improvement. I hope you find some answers without too much wasted time along the way!
I had the same problem at first, but I switched to a flexible spending plan. They give me x dollars in a year, I use them how I see fit. I’ve been going to gastrologist and a holistic care doctor, and the first takes care of the ‘known’ celiacs factors while the second finds all the immune system problems the first can’t diagnose or doesn’t even know about. I’m not saying one is better than the other, they just got different training. I think with an illness this big, it’s better to have a bigger team!
Agreed! Certainly can’t hurt! 🙂 Glad you’ve got a system going that’s working for you.
There just seems to be some unwritten institutional law that the more you need medical assistance from the medical establishment, the harder it is to actually get it. Despite the seriousness of this ongoing problem, your well written treatment of it made me laugh ruefully and delightfully. You are such a good writer, Molly–your SAT students are lucky to have you as their teacher!
Thanks, Maria! (They might feel less lucky when I’m stumbling through triangle questions…) Your first line sums up the situation PERFECTLY (unfortunately).
Today is the one-year anniversary of my endoscopy. My big time and money waste bitterness: I had a blood test EIGHT years ago that read positive for celiac, but my HMO read it as negative. So for the next seven years, I spent a lot of time and money going to a bunch of docs, including a chiropractor, for various symptoms. One of my faves: so fun to be told by a neurologist that you need to get a hobby so that you will feel better, since this is all in your head. Then another blood test was read correctly, thus the endoscopy. I’m sorry you still feel crappy, it is frustrating, I feel crappy too sometimes (literally…TMI). Your blog is great Molly. I’m glad we can snark it up a little.
That’s so frustrating! Sorry, Vik. That beats my delayed diagnosis story soundly (not that it’s a competition): I saw a gastroenterologist soon after getting sick, and all she did was a colonoscopy (speaking of TMI) and then sent me off with an IBS diagnosis. Doctors really suck sometimes.
Thanks for the comment and the extra snark. By the way, sounds like your neurologist should get a hobby, because it doesn’t sound like he/she’s doing so hot with the whole “medicine” thing.
Great post! And I’m howling at the multiple choice answers provided to your questions. Howling!
😀 Thank you! I’m glad! Hope it doesn’t get you kicked out of the test room for causing a disturbance…
I think I’d enjoy smacking the doctor who wrote that NYT article.
Last year I saw two GI specialists. My PCP recommended a vaunted magical specialist who’d done great things to help other patients of hers, but it was a 6 month wait to get in. So she recommended I see a local GI doc and have some basic testing done.
The local guy listened to me recite symptoms for about half an hour, asking questions, and then admitted he had no idea how to proceed, really. He said we’d do the test my PCP recommended, suggested one other, and talked me through the pros and cons of two possible drug treatments that might or might not help. A year later, I’m still on a modified dose of one of them, which does help a ton.
The specialist I waited six months for and drove two hours for was an ass, for lack of a more salient descriptor, paternalistic and condescending.
I’ve asked my PCP to try to note in my electronic file things like this need for occasional referrals. The office staff is still, seemingly willingly, obtuse and unresponsive (maybe *they* should be the ones who take the test?), but if I’m persistent, I’ve gotten the referrals I need without a pointless appointment.
There are, sadly, many doctors I think I’d enjoy smacking—including, it sounds like, that GI specialist you saw!
Following on Maria’s comment above, sometimes it seems like the patients who are most equipped to understand and manage their own health and healthcare tend to get stuck with the most uppity, least helpful doctors. (Or maybe it just feels that way to me? Sometimes I wonder if I’m totally delusional, misinterpreting everything, and a terrible, annoying trouble patient who deserves the treatment I get. But usually I’m pretty, pretty sure that’s not the case. Ha.)
And what IS it about doctors’ office receptionists?! I swear, in no other industry are they so brusque and unhelpful! Even dentists’ receptionists are way, way better.
I think I’d understand and agree with Maria except that it seems like the chronic patients I know are getting the brush-off and run-around from their PCP not wanting to deal with the insurance’s nonsense rules, not unhelpful specialists.
I really like my PCP. I hate their office staff, and the 5 different “offices” that you have to talk to to get something as simple as a referral done. I never talk to the PCP for that, just really cranky staff that answer the phone as though I’ve interrupted family dinner.
patient autonomy sounds great – I would take the test – my little girl had an allergic reaction so we went to the hospital and get here treated there (as you do) but once a certain amount of time elapsed and we had to get her retested, I had to go to my doctor who had never dealt with the reaction and ask them to refer her back to the hospital so she could continue to be treated! Medical systems can be crazy but then I like the saying that common sense isn’t so common any more!
[…] few things I hate about celiac disease. For example, how long it takes doctors to figure us out. The amount of time we spend lost in the logistical maze of insurance claims, referrals, and screwu…. The premium we shell out to feel safe, and how long it can take to get better no matter how safe […]
[…] or because of being an SAT tutor, I’m not really into standardized tests. Still, some (like the Patient Autonomy Test!) are genuinely useful […]