Help, Help, Help!

[Rachel]

Hi everyone,

I just want to cry. I got a letter in the mail from the administrator of a doctor's office I am (was) supposed to go to. They cancelled my appointment on me. I'm so upset because I desperately need medical help. One of the reasons I was glad to move out of Alaska was that I would be near good medical facilities again and could get adequate care. But maybe that isn't going to happen.

Here's what's been going on:

Last week I called the doctor's office and left a message for a nurse to call me back. I said that I had some questions about tests.

On Monday of this week a receptionist called me back, only she didn't identify herself as the receptionist. And so I assumed that she was a nurse. She got kinda freaked out that I was in a wheelchair and couldn't understand why I would be. And so I got a little scared that this nurse knew so little about dysautonomia. She told me that I shouldn't go to these doctors that treat dysautonomia, I should go to a cardiologist. Eventually, she said, "Well, maybe you should talk to a nurse?" I was like, "You aren't a nurse?!" She said she'd have a nurse call me back.

So I've been waiting for a nurse to call. But today I got the letter from the administrator saying that my appointment has been cancelled because they cannot accommodate my requests. But he doesn't even know what my requests are! I don't even know what my requests are yet! I was never allowed to speak to a nurse to get more information about the office in order to know what to request.

This decision to cancel my appointment can only be based off of something the receptionist said. A receptionist shouldn't be allowed to give medical advice to me or to the administrator, right?

Have any of you faced something like this before? Do they have the right to cancel my appointment like that?

If you have any advice to offer, I'd like to hear it. I just don't know what to do.

A sad and frustrated Rachel

Edited February 17, 2007 by Rachel

[DancingLight]

Rachel,

After all of that I would begin to wonder if I was meant to see that doctor! Or if there is a sign you're not supposed to! Geez!

I am sooooo sorry.

I had my PCP do this to me once--saying they needed to make room for acute care patients that day and there was nothing he could do for me anyways. It turned out to be a big miscommunication and he called me on the phone, apologized and talked through what I needed. That's the closest I've come to something like that happen to me.

I really don't have an answer for you, but thought I'd chime in with a HUG b/c you hold all of us up, so now we'll hold you up!

Is this a doctor you have heard good things about? I wasn't quite clear from your post...

Still, I would at least give a call to the office. It sounds like, unfortunately, to see this doctor (who may himself be a gem) you are going to have to go through an office staff that is a pain in the tooshie.

You could ask to speak to the office manager (rather than the receptionist) or to speak to a nurse. Tell them you do not understand why they cancelled your appt., that you really want to see if you can make seeing this doctor possible, etc? Say you have a right to schedule an appt!

All I can say is try, try, again if you really want to see this doctor. You may have to put on your 'tough skin' to deal with the office staff. They sound like the real challenge. I konw that I LOVE my PCP but the office staff....grrrrr....red tape, red tape, red tape AND miscommunications right and left. They may have made the decision without even consulting the doctor!!!!!!

My problem is that when I'm angry or upset, I cry and it is soooo hard b/c I'm trying to be tough and assertive on the phone and then all I want to do is cry!

Let us know if you have any luck....I don't have any magic words of wisdom.

Emily

[Rachel]

Emily,

Thanks for your support.

Yes, I've heard excellent things about the doctors at this office. I've heard from people with POTS who have been very pleased with the care they received there. They've been going there for years. I've also heard good things about the nurses and techniciains. I've never heard anything about the receptionist, though...hmmmm. Maybe good things only start after you get back into the testing and exam rooms!

I might just have to turn everything over to my husband and let him fight this battle. He said he'd call the administrator on Monday (of course this had to happen over a weekend!) and see what he can do to straighten things out.

I'll keep you posted.

Rachel

[Sophia3]

Well..let's try to be positive...like Em said, maybe this doc is not for you.

BUT to make yourself feel better, try sending a BRIEF letter asking why and send it CERTIFIED MAIL. And mark the letter to the doc PRIVATE and CONFIDENTIAL and tape the envelope closed.

At least it will give you some closure...unless your husband can get an answer on the phone.

It sounds like a bad game of phone tag and you owe it to clarify things and if the doc is hesitant, to try again or move on.

Best to you.

[bttrflyamby1981]

Hi Rachel,

I'm so sorry you had to deal with this. I hope your husband can take care of this for you. In the meantime you may want to look for another possible Dr? It doesn't hurt to have one lined up just in case.

I have been getting somewhere when I see an EP. The first one there was a missunderstanding and I just was having a tough time getting in to see him. I only have seen the second one once, but so far everything is going pretty good.

Wish you luck.

(((HUGS)))

[P SUDIK]

Oh Rachel, I am so sorry to hear what happened with the dr.'s office,I would really like to see you get another dr. I know how hard it is to find a good one,one who'll work with you. I have called several PCP'S to see if they knew about POTS.Many treated me like I was crazy. I really understand your frustration.I wish you the best of luck and I will pray for you. HUGS and LOVE Pat

[Dizzy Dame]

(((Hugs))) Rachel.

I think you should call the office on Monday and ask to speak the office manager about the cancellation. Perhaps you could also try to reach the doctor directly?

Hopefully this was all just a big mistake!

-Lauren

[deucykub]

Oh, Rachel, I am so sorry to hear you are having such a difficult time!

As DancingLight said, you are so supportive of everyone on these forums, so please let us be there for you now. Here is a big HUG and a YOU'RE NOT ALONE sent your way.

Don't give up. Sometimes these doctors are misrepresented by their staff. You are strong. Remember you have as much right to be seen as any other patient. From your signature, it seems you have a solid faith. God is watching out for you and will work this situation out for good!

Recently, I have started faxing my doctors when I have a question or just to give a monthly update on my status. My brain is so uncooperative most of the time, so it works out well for me to get the right message across. I have found the doctors appreciate the communication, and all but one has called me back directly to get more information or discuss my questions (the other one waited until my appointment, which was about a week away). It's a great and FAST way to get past all the administrators and staff that sometimes create more problems than good.

Perhaps faxing this doctor with your concern about the cancelled appointment and your questions and health status might prove helpful for you in this situation.

If you don't own a fax machine, most office stores have a faxing service for a charge of about a dollar a page. My husband bought me an all-in-one printer for my birthday a few years ago that has become a new lifeline for my medical care. You can usually get a decent one for about $80 now. It sounds silly, but the ability to fax has made me so much more empowered in reaching my doctors!

Hang in there. This is going to work out for the best for you!

(Edit to add: If you fax your doctor, be sure to make the "To:" the doctor's name, i.e. Dr. John Smith, so the staff will deliver it directly to him/her. )

[kmpower]

Hi. I am so sorry you had this disappointment. I know that often doctors are unaware of these problems and many appreciate learning that the receptionists are self-appointed gatekeepers.

I agree with Deucykub about faxing. When I want to be sure my words are "heard" completely (vs. being interrupted or judged during a conversation) I put them in writing. Faxes are fast and certain. That way, it also goes into my legal patient record and they should not (and never have) ignored it. In every case, the doctor has called me back.

I keep the doctor's time in mind and try to explain briefly what my symptom or question is.

Good luck. I would not give up on this doctor until you are positive that you should do so, since you have heard good reports on his work.

OLL

[yogini]

Hi Rachel,

I find it very strange that they wrote you a letter instead of just calling you to cancel the appointment, especially since you hadn't even seen the doctor before. My personal experience is that receptionists know nothing about POTS, nor do most nurses (nor do most DOCTORS, for that matter of fact). If this doctor was recommended to you by multiple POTS patients, maybe you or your husband can call back and ask if there was any misunderstanding - that you have the same exact condition as many other patients he treats, so he should be able to help you - if those people are comfortable with your using their names, maybe that would help you too. I'm not sure it makes sense to send something in writing at this point. It will take time and effort for you to write and more time for them to review and get back to you; you can always do this at a later date if the matter can't be resolved over the phone. Hopefully it's just a misunderstanding that can be cleared up tomorrow. Let us know how it goes.

-Rita

[lavender]

Rachel, I agree, a fax might be a good idea. It would be nice if you could somehow bypass the other staff and talk with the doctor.

I'm so sorry this is happening. how so very frustrating!

hugs!

[Rachel]

Thank you everyone for your kind responses and advice.

At this point our plan is to call the office tomorrow. My husband is going to take care of this for me. I'm just too tired and brainfogged to deal with it properly at this point. It is hard for me to talk on the phone - conversation goes faster than I can think. I like being able to type because I can take my time.

Anyway, my husband will call, speak to the office administrator and see if he can get things straightened out. We will see how that goes and then I will consider writing/faxing the doctor if need be.

Meanwhile, I'm also going to look into some other doctors in my area. Maybe I'll be able to find a better doctor, or a good doctor that also has helpful staff memebers.

I'll let you know how everything turns out tomorrow.

Rachel

[flop]

Hi Rachel,

I'm so sorry to hear about the problems you are having with this doctor's office.

I wonder if the administrator has just thought that the other POTS patients are quite sick and need a lot of appointments and thought that adding another one to the doctors list would be a hassle?

It should definately be the doctor's decision whether he / she can help you or not. Get your husband to insist that the dr (not a receptionist or administrator) decides if they can help you or not (they can only really judge that after giving you an appointment to find out what your troubles are).

If this dr is good with POTS patients it will be worth the effort of fighting for an appointment.

Good luck,

flop

[lizb]

That's awful!! Sorry you feel you have been let down by your DR. but they say when "one door closes another door opens" and maybe the second door will be the right one, hope it is... I am grateful I have a good Cardiologist but I was so disappointed when I received a letter telling me my app was moved to 30th May it was orginially 20th March, so gutted but at least I have been dx so I just have to try and be patient and think that someone must have needed the appointment more that me.

Keep your chin up.

Luv LizB

[Rachel]

I don't have much news to report. We're still trying to get a hold of the administrator. He's the one who sent the letter cancelling my appointment. He is out of the office today, but should be in tomorrow. I was just given his direct number, so it should be easier to reach him now.

One bit of good news, I did find a pcp yesterday. And I have an appointment with her next week. So even if I can't get to a specialist for a while, at least I can get to a pcp who can write prescriptions for other stuff I desperately need (like a new wheelchair, support stockings, etc.). And maybe she'll get a script for birth control for me too. I'm ready to do anything that might help!

Rachel

[corina]

hi rachel,

i'm sorry that i'm late here, just was sure i already answered this one (but what is my memory worth ).

i am sorry you are treated so bad by this nurse/administrator. at least you found yourself a new pcp, i found out that a good (helpful and understanding pcp) is worth A LOT!!!

hope she'll be able to help you getting your new stuff!

corina

[lalalisa]

Rachel,

I'm SO sorry to hear about this situation. Any new updates?

I am glad to hear that you have found a PCP. I will pray that he/she is understanding about your entire situation.

Take care and thanks for keeping us posted!

Lisa

[Rachel]

No, there aren't any updates yet. We are still trying to reach the administrator. He hasn't answered the phone, nor has he returned our phone calls.

If we can't reach him this week, I guess we'll try writing a letter to the doctor.

[DancingLight]

Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr........

................................................

That is soooo frustrating.

But honestly, remember this, the squeaky wheel gets the grease. I HATE that that is the way it works, but it is.

Emily

[Rachel]

Hi Everyone,

I just wanted to give you an update on the progress. Or lack thereof. The squeaky wheel did not get the grease. Despite numerous calls and messages, the administrator never called back. So this place seems to be a closed door. Hopefully I will have enough energy to write a letter to the doctor and the overseeing hospital to explain what happened. They need to konw that patients are being turned away without sufficient explanations.

There is some good news, though. I did find an excellent pcp. She's willing to help in any way she can. Plus, with the help of a friend (Thanks, Lauren!) I found a doctor who has about 40 patients with dysautonomia. His wife is also disabled from some dysautonomia problems, so he understands all aspects of what I deal with.

I had an appointment with this doctor last week. And it was so wonderful to be able to talk WITH a doctor about my health instead of saying this is what I have, this is the test I need, or this is the medicine I need. He'll actually be able to help me. And if need be, he has connections with many different specialists from the north to the south. So he can refer me elsewhere if needed.

We haven't started much treatment at this point. We are mostly running a ton of blood work. Hopefully the results from that will give better direction for meds to try.

So, anyway, the first doctors office didn't work out. But I'm very happy with the doctors I have found. I think we'll be able to start getting somewhere with treatment.

A tired but happy Rachel

[DancingLight]

Rachel,

I was watching for your update and then was down for the count for a few days! Sorry!

I am soooo sorry the 'squeaky wheel didn't get the grease'. I can't say it always does, but sometimes it does. Grrrrrrrrrrr....

I am grateful you have a good PCP...and maybe this person will advocate for you and call and schedule with this doctor you want to see.

I also appreciate that you are using precious energy to stand up for yourself and also to let the doctor and office know what happened b/c it is unacceptable. It's so hard to keep fighting that stuff. I am doing this with Ambien and have been for over a year now. Sometimes I just want to give up but I also don't like things that are 'unjust' to just be let go!

As Sophia would say, tie another knot and hang in there!

Love, Emily