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#1 annkd

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Posted 02 July 2009 - 05:27 AM

I am in a bit of a pickle. I had my pulmonary function test done about a month ago. I even have the test results in hand. My doctor has not gotten back to me to discuss what appears to be a bit of a red flag (Obstructive Airways Disease - Peripheral Airway and a hand written note from the MD that wrote out the report.."Internal decline FEV & FVC. Consider Lung volume & DLCO in setting of scleroderma as well"). I've called twice and written a letter as well. Still nothing. I'm still waiting for my bone density test and have called and written about that too. What would ya'll do? Just show up and knock on his door? This is so frustrating. Thanks for any thoughts. -Ann

#2 Jeannie McClelland

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Posted 02 July 2009 - 09:02 AM

Hi Ann,

I'd make an appointment and then just sit in the chair looking immovable until I got some answers. :)

This seems to be such a frequent occurrence, uneccessary, cruel, and utterly frustrating. I think I would also consider sending another letter, certified, proof-of-delivery, etc., in which I gave the doctor one week to repond satifactorily in writing or I would be reporting him to the American Medical Association, state medical association, and his certifying board.

Did you ever read the Patients' Bill of Rights? It's worth looking at. Here are three excerpts:

The Right to Information. Patients have the right to receive accurate, easily understood information to assist them in making informed decisions about their health plans, facilities and professionals.

Being a Full Partner in Health Care Decisions. Patients have the right to fully participate in all decisions related to their health care. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators. Additionally, provider contracts should not contain any so-called "gag clauses" that restrict health professionals' ability to discuss and advise patients on medically necessary treatment options.

The Right to Speedy Complaint Resolution. Patients have the right to a fair and efficient process for resolving differences with their health plans, health care providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review.

Best of luck. Let us know how you get on, OK?

Warm hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#3 Amanda Thorpe

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Posted 02 July 2009 - 01:52 PM

Hello Annkd

Jeannie's right, persist and face to face they have to respond to you. Who cares if they doesn't like it, the issue at hand is far too important for those considerations. Just remind yourself you're doing nothing wrong, it's your body and disease and it's the role of the doctor to give the answers. I'd even go as far as to ask, when there, why the delay in a reply? If it helps bear in mind you're not only making it better for yourself but for others who come after you.

Let us know how it goes and take care.
Amanda Thorpe
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#4 annkd

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Posted 02 July 2009 - 03:20 PM

Thank you Jeannie and Amanda - I thought, crossed my fingers actually, that I would hear from the doctor today. Not happening. I will check out Jeannie's links. I feel so deflated - I thought I had a great relationship with this Dr for over 5 years. What happened? Pretty sad day. -Ann

#5 Jeannie McClelland

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Posted 03 July 2009 - 02:29 AM

Hi Ann,

It's hard to know what else might be going on in your doctor's practice or personal life, not that it is any excuse~ As Amanda said, the issues are potentially too serious just to ignore. Making a follow-up appointment to discuss test results isn't confrontational, is a sensible course of action, and maybe you'll be able to get back on a comfortable footing with your doctor.

Another thought is that maybe you could make an appointment with a pulmonologist and see what a lung specialist would have to say. With that red flag on your PFT's, it would seem like a prudent thing to do.

Big, sympathetic hugs. I know it's frustrating and a bit scary.
Jeannie McClelland
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#6 Sweet

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Posted 03 July 2009 - 01:19 PM

Hi,
I can understand your frustration. I'm currently experiencing the same thing with two different providers. Because I am so persistent, I believe I'm viewed as "The problem patient". I have another appointment coming up. I'm going to be quite frank with the doctor and let him know if I am not treated with respect, and treated in a timely manner I will find another doctor. Not that he will care I'm sure, but trust me when I'm done going up the food chain, I think he'll care. :)
Warm and gentle hugs,

Pamela
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#7 annkd

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Posted 04 July 2009 - 04:49 AM

I've decided to take all of your advice.....I will make an appointment on Monday. Hey, Sweet, would you mind coming with me? I don't know why I'm so nervous. My husband suggested it was because I have had such a good relationship with him for almost 5 years. I need to understand what he is thinking by not responding to my letters and calls. Maybe there is a perfectly good explanation. I will let you know. Thanks for giving me a little push!-Ann

#8 Jeannie McClelland

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Posted 04 July 2009 - 11:47 AM

We're all pretty pushy! :D Anytime you think you need a shove, just let us know.

Warm hugs and a good giggle,
Jeannie McClelland
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#9 Sweet

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Posted 08 July 2009 - 03:32 PM

Hi Ann,

How did it go?
Warm and gentle hugs,

Pamela
ISN Support Specialist
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#10 Shelley Ensz

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Posted 09 July 2009 - 04:10 AM

Hi Ann,

I've been in a similar pickle before. I agree that the best thing to do is set an appointment. You need to discuss abnormal results face to face, anyway, and also find out how you can avoid communication issues in the future.

Perhaps it was just a temporary office disruption (his nurse was on vacation, he was on vacation, letters were lost, staff were all hit with a bug at the same time). Or perhaps its part of perennial confusion which means you might need to change clinics.

One of my doctors was furious that their clinic hadn't noted, copied or charted a letter from a specialist, which fortunately the specialist had copied me on. Another one apologized because a new nurse miscommunicated what they said. And so on and so forth. Mistakes happen everywhere, because we are all only human. But you want to make sure that the main clinic you go to is basically well managed.

A key thing to ask about is whether they are computerized. Clinics that are fully computerized for records tend to make the fewest errors. Those that rely on a combination of paper and computer records make the highest numbers of mistakes and failures to communicate test results. What we sometimes take as being a personal affront is often just poor systems design. If that's what the problem is, no amount of calling, writing or even visiting is going to solve the problem; only a new clinic with a better system will be of help.
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#11 relicmom1

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Posted 09 July 2009 - 05:10 AM

Shelley, VERY well said
Peace :)
Barbara aka relicmom1

#12 annkd

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Posted 09 July 2009 - 05:36 AM

If you can believe it, I am still waiting for a call back. I talked to the office manager this morning and she was very apologetic and said that she would personally write him a note and hand it to him this morning. She was not a happy camper with how this has been dealt with. We'll see. She said that if she put it in writing he has to respond to it within 48 hours (I think that is the right time....). Anyway, I'll let ya'll know. I'm learning. - Ann