Saturday, August 31, 2013

Doctors don't really understand chronic pain

Most doctors don't really understand chronic pain.  

People who have it for a long time are used to hiding it.  So doctors who are looking for "signs of visible discomfort" are not going to find it, and this is going to make them think you are a hypochondriac and not an excellent, well-practiced actor.  It's a good idea to establish some way to communicate with each provider when you're in discomfort.  If nothing else, this will save you the frustration of having to read the puzzled phrase "no signs of visible discomfort" so many times in your records. : )

Since they don't understand it (its causes and especially its effects), doctors will really just not be able to factor it into your overall situation.  It's frustrating, but if you set that bar low, you will be less frustrated.  It can also be a gate you use when meeting new potential providers.  How much do they know about chronic pain and what do they understand about its effects?  Can they factor this knowledge and understanding into the puzzle that is your symptoms?  If so, they may be better able to help you. 

At the very least, they won't frustrate you as much by throwing their hands up in the air and getting mad at you when nothing they try seems to help and they get pulled up short by their own limited knowledge and understanding.  Not all doctors do this, but some do.  Try to avoid them, if you can.  : )  But also try not to hold it against them.  No one likes to be reminded sharply of one's finitude.

Your health care providers don't really understand that your information is yours

Your health care providers (and their billers) do not really always understand that your information is yours and should be easily accessible, so you will have to go on the offensive mission and gather it even if they treat you like an annoying fraudulant fraudster (or like they think you're a hypochondriac and not a responsible adult trying to be organized). 

Cut them some slack because, in theory, they make it this hard in order to protect you and your information from unsavory types who might want to steal it.  It's just a rather unfortunate side effect that all this protection makes it a hassle for you to obtain it, as well.  (And judging by the amount of it that gets stolen every year, not that much of a hassle for the unsavory types to obtain.)

Frankly, you know you're working with good providers if they send you a copy of it (or post it online) automatically after your visit. If they do this, then you know that they believe that you should be a participant in your own care and not simply a consumer.  However, this isn't common, so be ready for arcane rules, regulations, and hurdles not clearly posted anywhere.  Be ready to make lots of phone calls and follow-up calls and records of the names of the people you talked to, their phone numbers, job titles, dates and times of conversations.  I wish it weren't like this, and maybe things will get better soon, but for now, you will have to hustle to get what is rightfully yours.

Request your medical records at least annually, while they are free

Request your medical records at least annually, while they are free (by law the first copy is free if requested within a calendar year, I think). 

If you've been tracking them with your PHR, this should actually be a piece of cake.  At a set point every year, you can look through your list of visits and know exactly who you saw and when and what kinds of records you need to request from which group and which records you already requested (if any).  You can create a form letter and then fill in all the information clearly and in an organized fashion.  The records retrieval people will love you and maybe even be nice to you and not need to be called 6 times for follow up.  They will especially love you for not needing this done ASAP right now or you will be in a bad place because that is when people usually contact them, needing it done next week when their standard response time is 8 weeks or whatever. 

Make sure you know each organization's standard response time, so you don't panic and start calling to follow up prematurely.  You could record this information on the provider page or your PHR!

Once you have your last year's records, scan those suckers into your electronic file, so you can print out the pages you need when you need them.  Then pat yourself on the back for having it together.

You need to take control of your personal health record now (before it gets complicated), pt. 2

You need to take control of your personal health record now (before it gets complicated), pt. 2.

Seriously.  If you wait to even find out about PHRs until you are on the other side of the mountain, putting one together will be prohibitively difficult for one or more of the following reasons:
  • Destroyed. They will have been disposed of (usually after 7 years) and no longer available.  
  • Prohibitively expensive in one go.  They will cost money.  $1.27 a page or more.  And they will print out and charge you for every page, including the ones that say nothing but "Page 2 of 2."  
  • Lost.  They will be impossible to obtain because they were lost in the move/merger/buyout/closing of the clinic.  
  • Overwhelming.  There will be so many of them that you won't be able to organize them in a meaningful way.
  • Useless.  Some of them will be comprised solely of doctor or PT speak, and they will mean nothing to you (OR OTHER DOCTORS) and will thus be worthless.  Better to find this out early, maybe while the doc or PT remembers well enough to actually produce a coherent 1-page summary if asked nicely.  And before you pay $1.27/page for 30 pages of useless gibberish.