Navigating the Medical System: Nurses & Receptionists

I'm so not a pro when it really comes to the medical system. I feel sort of funny offering any real advice about it, cause every time I deal with that system, I find out how silly my understanding of things was. But maybe I can say something helpful, at least if you have NO experience, surely I GOTTA know something helpful, right?

So, let me tell you what I have learned about receptionists, or medical assistants, or whomever it is that you must speak to and go through in order to reach your doctor.

The stereotype of the very protective receptionist is often true! It seems that their job must include a lot of "weeding out" of people who really don't have a referral, or who are just plain old nuisances. I sometimes wonder if doctors deliberately hire people who are "bouncers" of the medical world so that they (the doctor) never have to be seen as grouchy or mean or evil, etc.

Which is why I absolutely HATE when the hospital discharges me and tells ME to phone to make follow up appointments. I can never explain it the right way for the receptionist to understand at first that YES, THERE WAS A REFERRAL!! I usually word it in some sort of wrong or confusing way and spend several frustrating minutes trying to assure the appointment arranging personnel that NO, I REALLY DIDN'T JUST GET YOUR NUMBER FROM THE YELLOW PAGES, DECIDE MY SON NEEDS AN ENT, AND PHONE YOU ON MY OWN INITIATIVE!!

Do people actually do this? Do they just decide to call a neurologist, ENT, orthopedic doctor, whoever, just on their own whim?? I don't know. Maybe they do. Because the receptionist for sure sees it as part of her job to make sure no one gets through to the doctor this way, but that proper protocols are followed and paperwork is DONE! And no short cuts or self-diagnosis. :)

Which is why I love it when the hospital discharges us with the appointment already booked, or at least tells me that THEY will phone me. Whew.

But the receptionist can be a great help, so I try to remember their name. Really, it is just as important as the doctor's name. Because eventually the day comes where somebody made some sort of error. You or someone else forgot to make the appointment, or cancel it or whatever. And then it is ever so nice to pick up the phone and call and say "Hi, Janet, this is _____. I'm sorry, Janet, I'm asking a big favor and I know that it might be really hard to arrange, but ______." Trust me. Names are important. Get to know the receptionist if you can.

I love my ped's receptionist. She is great. She knows me well enough now, that many times she just offers "Would you like to speak to Dr. C directly?" And that is GREAT. Since things are so complicated with Joel, you should hear the messages I try to dictate, or how even simple things get muddled on the way to the doc's ears. Some receptionist will NEVER let you speak directly to the doctor. He's gotta call you back.

Receptionists are people you will deal with a lot, if you or someone you know, has a chronic health issue. Always be super nice and friendly, even to the grouchy ones. If it is quiet, smile and have a really short "small talk" conversation. You want the receptionist to remember you, and remember you in a really positive way. I don't know that it has ever made a difference in whether or not I got an appointment. But it sure has made it much more pleasant to get one on short notice. Or to have to rebook one I somehow forgot!!

That brings me to nurses. They really are the terrific advocates they are reputed to be. Most of our nurses have been fabulous, with a few exceptions. And they can sort of get or keep things moving for you, when you are stuck in the grinder at the hospital.

By which I mean that they can "nag" the doctors in a way you can't! :) So if you are waiting for some info or for a doctor to come in or order pain meds, or whatever, and you have waited a "reasonable" amount of time, call your nurse! She will be your advocate and she will check into why things are not moving along for you. Of course, things like CAT scans or MRI's are NOT things you can move along. But if you have waited most of the day for ENT, neurologist, etc., to come see you, ask your nurse very nicely about it.

But make sure you ask the right way. Of course, do it nicely. But I have found that how you word things sometimes makes a difference. So now if I ask "Do you know if the results of the X-rays are back?" and they say "No, I don't know," I always follow up with "Could you check for me?" Very important. Some nurses would check anyway, even if you didn't directly ask. Because you mentioned it, they'd sort of go the extra mile to find out. But some nurses won't. They might be too busy, or because you didn't directly ASK, they sort of don't realize that you REALLY want to know and are not just making casual inquiries.

When you ask them to check, they will go and phone a doctor or department (when they have time, of course) and not only will you find out important info. You will also help insure that you have not been forgot, or that there was no miscommunication or whatever. There have been a few times where I got a nurse to help me out with something that seemed to be taking a bit of an unusually long time, only to find out that it was forgotten or never order, or whatever.

Also, if you are a bit unsure about any sort of consult with a doctor or medical team, ask your nurse to be there. She really is your advocate! It has been helpful to me when I have later been confuse by something. She can confirm "Yes, they did say that." Or "Hmmm, I was confused by that too, so I'll check for you." Or even add helpful confirmations during the discussion. "Yes, Mom's correct, the Tylenol didn't bring down the fever." Stuff like that. And if I feel a bit intimidated by any doctor or meeting, having a good nurse there is really nice. Someone in your corner!

One thing I have started doing: I have made up a one page info sheet on Joel's condition and things particular to him. I ask them to tape it to his bed and leave a copy on his clip board. This way anyone who walks in to cover a break, or check him or whatever, has quick and easy access to information that is important. Because I have seen printouts from Wikepedia on Zellweger's Syndrome attached to his clip board! They are just trying to find out what they need and want to know about Joel. So now I help em out. My info is more accurate and more pertinent as it is about Joel himself.

I list the parts of him that ARE affected by the disease: eyes, liver, white matter of brain, etc. And I list the things that are not, but MIGHT become affected: hearing, adrenal glands. Then I tell them what he likes and what soothes him. He likes to be talked to, since he can't see. He like to be cuddled and touched. That sort of thing. And I even mention that though he is very seriously ill, and incurable, we DON'T know his life expectancy. And I keep it all to one page, which is really important, because I know that only a few people will have time to skim through a 4 page printout from Wiki!

It saves me from dealing with as much misinformation. Maybe I won't walk in to find a lot of brightly coloured but soundless toys tied to the side of his crib with the best of intentions and the worst of actual knowledge. And hopefully it makes the job easier, because the info is concise and to the point, and easy to read while you change the bedding, or listen to his heart, or empty the garbage, etc.

I really don't know if any of this info was helpful, or just bored you to tears. I obviously haven't learned as much I as had hoped through my experiences, as I feel this info is rather scanty and some of it you likely already knew. But maybe it was helpful. I hope so! When you are dealing with a chronic or terminal illness, you need all the help you can get.