Tuesday, August 21, 2007

Managing Your Own Health Care, part 1 - Four Key Tips

One thing those of us who have traveled for a time down the illness road find out is that not only is the road is full of nasty potholes, but you have to be your own navigator and driver.

My fantasy about how the health system works was that I would be handed maps, chauffeured, and have a team of mechanics making sure I traveled safely. I expected the system to diagnose me, to put me in the hands of an expert treatment team who were in regular communication with each other about the nuances of my care needs, and to make me better.

The diagnosis never happened. The team wound up being a constellation of players my husband and I located. And I was the communication coordinator, carrying my case notes and test results with me from appointment to appointment. At first I resisted playing this role – which was really resisting letting go of my fantasy of being taken care of. But eventually I had to accept that it was up to me and my partner to orchestrate my care.

Here are some of the strategies I learned for managing my own care:

(Let me preface this list by acknowledging that I believe there is white, educated, middle class, American-born, English-speaking, business-savvy privilege/bias involved on my part and perhaps unconsciously on the part of a few of the systems I interacted with).

  • Write up your own case history and keep it updated. Make it complete, current, and succinct. Bring it to each appointment and give a copy to each new practitioner.
  • If you’re looking for a specialist, it often pays to see the head of the department. He or she most likely got there because of excellent medical (and political?) skills.
  • It can take three months, sometimes six, to get an appointment with a god-level specialist. So make an appointment now, even if you’re not convinced you need to. You can always cancel it (And remember to do so if you don't need it. Others are waiting).
  • Find out if your doctor has email and will give you his/her address – and will use it as a channel for quickie communication. An example of a good use of email could be: "I had a minor headache that lasted about 30 minutes after I started the new medication. There have been no other headaches or side effects. Should I be concerned about this? Should I make an appointment to see you?" I use email with my pain specialist and my primary care doctor. I never overuse this channel and am respectful of the doctor’s time.
To be continued.........


Anonymous said...

"potholes" lol!! I claim these a road to when ever with a your on your own figure this mess out DIY map w/o instructions or a idea too seek proper protical in stroke care recovery / prevention / managment. Theres alot of point the finger N pass the buck in seeking depts. / mds. / diagostics and recovery care just to find reasons on WHY more CVA strokes. Theres too many fingers in the pudding and unessasary paperwork PROTICAL so claiming delays for my husbands care for wellbeing an hope. Hes had 5 strokes since 10/21/08 had too many exscuses and unessasry Dr. appts. and now major issues on profit before patient / I claim PPO = patient Pays or OUT! Having to educate self by local library / internet do to nobody will step up and do there jobs w/ integrety and a lil moral for reason in really caring for a 47yr male w/ now perm. disabilities w/o future plans for seeking other resourse or providers that are by a higher level. Finding a lot of fingers aimed to each other for their excuses for reasons on not following through proceedures or there own systems proticals. Is a &*cking Crime really. I get to be a uneducated careprovider too my husband without any family / friend help. Amazing how you learn who your people really are in times like this is. My family of 4 has been mamed and scared by my anguish and anger by frustrations and disapointments by seeking any help in my being educated on how this healthcare providing system works and w/ BCBS PPO (out of state)=real big hang up pending customer services personality issues. Ive been lost in several angentcies systems {my county asst./ med-cal / food stamps / ihss/ etc) to be that 1% chance of being lost etc, ~quote" never seen this before" I claim VOODOO and Personal as i speak a english and have a ssi # and have 2 -L's in our name. I now know what Healthcare has its issues but for reasons not focused on the reform claim. "Screw Reform more like blown up!! Its so much red tape w/ insurance/ healthcare ceo's/ MDs w/fraudulant claims and control on what & who gets care. We are alive today but w/ so much depression and overwhelmed hardships beyond belief. I challenge these major providers to stick there foot/dicck in my shoe for a minute and walk my day caregiving a cva x5stroke, Also titled as a spouse/ caregiver/ parent/ advocate Uneducated one at that and never has a willing soul just to tell me this protocal standard for fair prompt care and look at my family as a once happy family too a daily depressive and hopless being. I blaim so many of these willing to bill us and not take care of Tim as if he was one of there own people. We are on ssdi and med-cal acss and 19 months to resummit requests of needed resorces still. ive tryed all i know and socal workers assigned havent done there job in complying my concerns and issues. ive left messages too many to supervisors etc. still notta. I have to care for my husband be it all for him and need too get a break for my sanity. Ive became a hard ugly person and it shows on me. i hate my life and pray too die offten "no suicides" but out of rage to act out unfairly to my girls and spouse. I know now what the oath " in sickness and health...death do u part means!" its not the flu folks and it happens to 46yr males. loosing selfs, pride, independance worth, esteem, freedoms, now will. sorry
Sincerly, Mary Ann Russell 94541

Anonymous said...

CONTINUE:to be so ventful but figured to be honest and non fiction garuteed or $ back! lol Im 42yr uneducated,uncertain and overbeyond whelmed by my days everyday. im not providing a enviorment thats healthy by my anger in so many ways. is there a FREE somewhere/ one I can discover that will care and show concern? Im at my giving up and running far away i just cant anymore w/o inspirments/ btw my god is pistoff at me so leave that option out for know. Im christen but lost my faith for now. victum by begging my crys for mercy and plees for grace in finding hope again been unseen for me/us so no god! sorry but broken. ty again for reading hope to have any help in bettering my days