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Just Venting


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#1 JANQ

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Posted 21 March 2009 - 02:10 AM

Hello Everyone!

I am not sure which way to turn, I feel like I am upside-down, again! I initially got on treatment when I was diagnosed on December 19. At that time, the P.A. in my rheumatologist's office had me make two follow-up appointments, one for one month away with her, then one for a 3-month followup with the doctor. My 3-month followup was on Thursday. Due to unforeseen circumstances, I had to cancel. Long story, please don't ask! However, yesterday, I stopped into the office to reschedule. I was told by the P.A. that I specifically needed to see the doctor at this visit, after having the previous three visits with the P.A. Well...the receptionist informed me that the doctor is booked solid until mid-August! I exclaimed that it was for a follow-up, not an initial consult, and I could not believe it! She said she would go back and check with his assistant, to see whether or not they could see me any sooner. She talked to the assistant, and came back and said, "No, you will just have to schedule in August, but the assistant said if you need meds during that time to just call, or if you have any questions, just go on back and she will be happy to talk to you." I asked if there were any labs that I needed to have in the meantime, anything at all, and she told me to go ahead and go on back and ask the assistant. I went back to the office, as instructed, and explained to the receptionist in that area that I was unable to schedule an appointment until mid-August, but I had questions regarding labs and such for the assistant. She told me to wait, she would let her know that I needed to talk to her. I waited...20 minutes, as long as I possibly could, then had to leave to pick up my daughter for Noon dismissal at school. I told the receptionist I was unable to wait any longer, and she said that she would have the assistant call me. I waited for a call for the rest of the day, no call.

This isn't the first time that I have felt completely pushed aside at this office. I had called two previous times for copies of my labs, asked to have someone call me about getting them, and had no return calls, no responses. I also had my Nexium prescription rejected by my insurance company and the pharmacy faxed my doctor's office, and no responses on that issue, also.

A dear friend, who has scleroderma, knows the issues that I have been having there, and my concerns with the P.A., and goes to another doctor in the same office. This other doctor has seen her on every visit except for one, and on that visit still popped in while she was with the P.A. She said that he is compassionate, caring, very knowledgeable, and she has never felt brushed aside. She also said that she has gotten return calls every time she has called the office. Since she told me about him, I have heard numerous good reports about this doctor, people just love him. My friend really wanted me to see her doctor, so on her last visit she asked if they would take me. She was told that they don't do that (allow patients to switch doctors in the same office), and was told by her doctor, "I'm not going to break the rules."

Well...once again, I feel like I am stuck between a rock and a hard place. It is another up and down situation. (I feel like all I do is cry anymore.)

If I felt like I had stabilized, the wait would be okay. However, new and different issues have popped up since the last visit, and I am upset. I did explain this to the receptionist when trying to reschedule.

My 3-month followup will now be an 8-month followup.

I am not sure which way to turn. Should I call my internist? She was the one who referred me.

Any advice would be very appreciated.

Many hugs to everyone,

Janet

#2 Jeannie McClelland

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Posted 21 March 2009 - 03:31 AM

Oh Janet,

I'm sure everyone will probably tell you the same thing: time to change doctors. It sounds to me like it is time to change practices (offices) too.

Do you know about the Patient Bill of Rights? I think it is probably the most important thing for any patient to know after the name of their insurance company.

There are a lot of versions of this document, as organizations paraphrase what President Clinton's Advisory Commission on Consumer Protection and Quality on the Health Care Industry issued as a set of rights and responsibilities. Most states have their own and many, if not all, hospitals and research centers do too. I'm going to quote from the version the Department of Health and Human Services issued for the guidance of Medicare/Medicaid compliance.

Among other things patients have the right to:

- The Right to Choose. Patients have the right to a choice of health care providers that is sufficient to assure access to appropriate high-quality health care including giving women access to qualified specialists such as obstetrician-gynecologists and giving patients with serious medical conditions and chronic illnesses access to specialists.

- Care Without Discrimination. Patients have the right to considerate, respectful care from all members of the health care industry at all times and under all circumstances.

- 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.

If you need a referral to see another specialist, you will need to go back to your internist. I'd go back to her anyway - she needs to know how the doctor she referred you is behaving. It doesn't matter that you can't get past his staff to him, he is responsible for them. While you are there, you could ask her for the Nexium prescription since you know you can get to her to resolve problems with the insurance company.

I know it isn't in your gentle nature to get mad, vocal, or jump up and down and shout that's not good enough!! Sometimes you just have to do it, though. If it helps, pretend you are me with my red hair and good Scots temper and stubborness! Just think to yourself, Jeannie wouldn't take this and I'm not going to either!

Many hugs and much love,
Jeannie McClelland
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#3 Kathy D

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Posted 21 March 2009 - 04:43 AM

Janet,

I am so sorry, that is a tough situation. Personally, I'm not sure I'd want to back to a place that didn't seem to care about me.

I'll be interested in what you decide, now that you have some great information from Jeannie.

Take Good Care!

KD
Diffuse Scleroderma Diagnosed March 2009

#4 janey

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Posted 21 March 2009 - 04:55 AM

Janet,
What a frustrating ordeal!!!! I'm so sorry that you are having to go through this. I know you live in an area with limited rheumatologists, but is this the only rheumatology office in your area? If it isn't, then I would recommend trying another doctor in another office. If it is the on rheumatology office, then just call and make an appointment with the doctor you want to see. As Jeannie said, you have the right to see whomever you want. I've go to a rheumatology office with 3 doctors and I hear of people switching between them all of the time (especially "away" from one doctor in particular.)

Also, contact your internist who seems to be working in your behalf. See if he can get behind you on this or have another recommendation.

If you're not sure about rheumatologists in your area, please click here on Finding Rheumatologists. The American College of Rheumatology has a worldwide directory.

Good luck Darlin'. I hope this works out to your benefit.

Big Hugs,
Janey Willis
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#5 Penny

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Posted 21 March 2009 - 05:21 AM

Janet,

First a warm soothing hug!

I agree with Jeannie that you should probably go back to your Internist and see if you can get a referral to a new Rheumatologist. If you are like me and get nervous about the idea of conflict, you can simply say that the one you are seeing seems to have a very large patient load and seeing him/her can be difficult. The fact that you had to reschedule and were told that you could not be seen until August, especially when you have new issues that have come up, seems almost like a punnishment.

I am in the middle of a hunt for a new Internist, myself, because it seems that they have a large number of 'new girls' in the office all the time. My Dr is a nice guy, very personable, but seems to show little to no concern for what is going on and never does follow-up on his own tests.

You have the right to expect the proper care in a timely manner, and in the US under HIPPA you have the right to your medical files and test results and should not have to beg for them or ask repeatedly. We often forget (myself included) that we employ our physicians, they work for us. We contract them to monitor our health and if they do not fulfill their job to our satisfaction we have every right to fire them. If you are anything like me, you enter the exam room much like Oliver Twist with bowl in hand asking "please, Sir, may I have more" as if they have total power over our lives.

Remember that we are all behind you... some of us holding golf clubs to add our strength to yours.

Warm hugs,
Penny

#6 Snowbird

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Posted 21 March 2009 - 01:33 PM

Well Janet

I can't say it any better either definitely time to move on and get yourself a good, caring doctor that you can relate to don't worry about being gentle and hurting their feelings either (in the old doctors office I mean if you plan on leaving) especially since they don't appear to worry about anyone else. I'm sure with all the help Jeannie and Janey provided to you, you will find a great new rheumatologist which sounds to be exactly what you seem to need. Jump all over it and let us know when you get the new appointment! Take care!
Sending good wishes your way!

#7 JANQ

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Posted 22 March 2009 - 03:14 AM

Dear Jeannie and Janey:

I am so grateful for the advice and the links! Thank you so very much. I never before knew of the Patient Bill of Rights. As a patient, I have always gotten the feeling that I was the person with the least amount of rights to choose or do anything else, for that matter. I am glad to have the knowledge; knowledge is power, right? You both have helped me immensely! I checked out the link to Rheumatologists in my area. Yes, we do have limited resources where I live, and out of the five, two are in the office I where I currently go, and one outside of the office is one that I have already ruled out due to reports from others. However, that does leave two in my area, and I will be asking my internist about them.

Dear Penny:

You absolutely hit it right on the nose!! I did have reservations about talking to my internist. I don't like conflict, and I felt that she might be upset if I brought up these issues. I also had the thought that if she were especially "tight" with these doctors, then who would she side with, them or me? However, if I put the situation in the context of patient overload, it doesn't really say anything negative about them. I really like putting it in this way! I don't have to get the courage up to say this!! I can do it!!

Yes, how often have I felt that doctors have total power over my life and health care. And along the same lines, with this I have always felt that I have no power, no rights, not even to my own files. And, having requested them twice with no responses, it affirmed this belief.

Dear KD and Snowbird:

I really do feel now that to go back to the same office would be the most detrimental. Yes, I think now that I have given them enough chances, and it is up to me to change to a completely different office. I have the tools, information and strength to do it!

To all of you:

Your warmth and advice has helped me so much! I will be putting on my "Janet dressed as Jeannie" disguise when I make my phone call to my internist next week!! :)

Many, many warm hugs and much love!

Janet

#8 debonair susie

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Posted 22 March 2009 - 05:17 AM

Dear Janet,

I'm with the rest of the folks here, I'm so sorry to read of the problems you've been having with this particular doctor's office. It may well be he is not aware of the conflicts that have taken place "up front". If such is the case, he should be made aware.

I had to go to an endocrinologist over a period of time. The nicest and gentlest man I've ever met. Yet, his nurse was completely opposite! I mentioned to him, on the second visit, that she must have some problems going on in her life. He said that she didn't. I told him, in that case, she seems to not care for me at all, because she has been very unkind each time I've had an appointment. Plus, she is less than expeditious with anything that should be sent to me in a timely manner, or not at ALL.

He let me know he appreciated my telling him and that he would take care of the matter. He did -- she no longer works in his office!

Also, the first visit my mother had with her doctor, the nurse was something else! She was condescending to my mother and spoke rudely to her (as her DPoA, I am with her at all doctor appointments). When alone with the doctor, I asked if this was his regular nurse and he told me she wasn't. I let him know I was glad and let him know how she behaved with Mom. He also thanked me and said that he would not have her work for him again -- and he didn't!

I'm not a wrecking ball; I don't believe in causing problems for people. However, when folks go to the doctor, they generally are there because they have health issues. Each medical staff person they come in contact with should assume that the patient has only days to live and treat them with that kind of respect!

I have an issue that involves an incident with the medical staff in the ER when I took my mother in, a couple of weeks ago. I have some things going on right now, but when my schedule clears, I will be drafting a letter, which I will then take (personally) in to the hospital administrator. I know the name of said person and also had two other nurses witness what happened, the aforementioned night.

I have great empathy and respect for the medical community. So, under the circumstances, I weigh things very carefully before taking action, as I will be, in the very near future. If the quality of our care isn't kept at the high standard it should be then we have a problem that is going to get out of control and more people will suffer as a result.

As you can see, I feel great passion about this very topic and will do what I can over here.

Janet, I only wish gas cost less. I would come over there and help you out with this. I'd give you lots of big, soft hugs and we would tackle this together! Still, I am sending you {{{{{Soft Hugs}}}}} to be used liberally!

Also, I am so grateful to Jeannie that she is loaning her "Jeannie" to you :rolleyes:
You go, Girlfriend!
Special Hugs,

Susie Kraft
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#9 Jeannie McClelland

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Posted 22 March 2009 - 06:20 AM

Susie, you've got it 100% right. We're doing ourselves a disservice and also every patient that follows in our footsteps if we don't stand up for ourselves or the people we are advocates for.

You touched on a point that has been one of my hot buttons for years. Why do people who should know better treat those who cannot adequately speak for themselves so badly? I had a beloved friend who unfortunately died of chronic progressive multiple sclerosis. She was a brilliant, funny, kindly and caring person who over time became trapped in her own body, unable to move and only able to speak with difficulty. I saw people ignore her and speak only to her husband or me, treat her with physical roughness, bully her mentally.

If we hadn't reported such behaviour or complained about it on the spot, what would have happened to the next patient? I know you are going through something similar with your mother - you must be her voice. Even someone who is mentally and physically able to speak up might be paralyzed with fright at the idea of any kind of confrontation, no matter how low key.

There are various ways and means to get the point across. Because I really do live up to my red hair at times, I try to allow myself a little cooling off period. And then I put my observations and complaints in writing. In most group practices, there is a practice manager. I suspect all doctors belong to a state and the national medical association. There are 'Boards' for specialities. Hospitals have similar formal and informal hierarchies and certifying agencies.

Of course, the simplest and easiest way to get a point across is to take your business elsewhere if you can and follow up with a 'Private and Personal for Addressee' letter! :lol:

Big warm hugs all around. Hey! That's another thing!! Write thank you notes when you get someone who excels. :)
Jeannie McClelland
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#10 Kamlesh

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Posted 22 March 2009 - 05:43 PM

Janet,

This is true in some parts of country. When I was in Chicago, I tried to make an appointment with Scleroderma specialists in Northwestern University. Despite calls from my primary physicians and close family members who are doctors, it took almost two months.

Here in California, doctors are lot more accessible. I never have to wait more than few days.

I would not dare to wait for 8 months, I was you I will find another rheumatologist, even if I have to drive over 100 miles or fly.
Kind regards,

Kamlesh


#11 JANQ

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Posted 23 March 2009 - 01:14 AM

Dear Susie:

You are such a sweetheart! Thank you so very much for your kind words and for the soft hugs; I felt them way over here!

You and Jeannie both have very good points, this doctor should be made aware of the situation in his staff. Of course, because I have a hard time talking to people in person (the confrontation/conflict issue again), it will have to be in a letter. It would be a disservice to others if I did not let him (or someone) know what has been going on.

I agree so much with you both on the treatment of patients and that we should all be treated with kindness and respect by all members of the medical community, not just the doctor. I have been treated rudely on each visit by the primary receptionist, with never a greeting or a smile, and always feel like I am "putting her out" when I arrive. Even on Friday's visit, when I asked to speak to the assistant, she argued with me and I had to explain twice that the assistant had just told the other receptionist that I was welcome to talk to her anytime with any questions.

Susie, I am so sorry about the ill treatment your mother has received in the past, and just recently. Thank goodness she has you!! I hope that you get the resolution that you and your mom deserve! And Jeannie, oh, how sad of what your friend had to endure through her illness.

Kamlesh, it should have been a red flag for me when it took over a month to get in to this doctor for the first visit, after the referral. At that time, the doctor said "Oh you were referred by Dr. XXX? I always try to see her patients right away." I couldn't believe that "right away" was over a month! I like your suggestion to look outside of my own area! There are other cities within one or two hours of me, and I am sure there is a good rheumatologist elsewhere!

I am so grateful for all of the support and advice I've received from all of you!! It gives me great comfort!

Wishing you a good day, and much love to all.

Janet

#12 JANQ

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Posted 31 March 2009 - 01:41 PM

Hello everyone, this is just an update on recent events:

I never heard back from the medical assistant at my rheumatologist’s office. This didn’t surprise me, and even though it was just another disappointment, I had made up my mind to change rheumatologists and offices completely.

In the meantime, I have been doing research on the different rheumatologists in my area. I found several different websites with ratings. In all of the different websites, I found one doctor who seemed to stand out from the rest. The comments about this doctor say that he is kind, compassionate, caring, listens to all complaints without brushing them off, and is very knowledgeable and professional, among many other very positive comments. The ratings are excellent for both him and his office personnel. I decided that I wanted to see this doctor.

I waited for Spring Break to pass, since I assumed my internist would be out of the office last week. I called her office first thing yesterday morning, and left a message for my internist stating that I was wondering if she could refer me to Dr. X. This morning, I got a call from the new rheumatologist’s office!! They said that they wanted to set up an appointment to see me after getting my internist’s referral. This doctor will be able to see me on May 4! I am so thrilled! It won’t be a long wait until mid-August!

My internist has already sent the new doctor my labs and test results!

Thank you to all for the kindness you have shown, your suggestions and support! I never could have done it without you! I feel like there is hope and help now, instead of falling by the wayside.

May we all find the help that we need!

Much love to all,

Janet

#13 Sweet

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Posted 31 March 2009 - 02:14 PM

Dear dear Janet,

This is fantastic news!!! I'm kind of in the same boat as you, maybe this will give me incentive to do something different.

Let us know how the appointment goes.
Warm and gentle hugs,

Pamela
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#14 Jeannie McClelland

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Posted 31 March 2009 - 03:25 PM

Janet-Honey, we'd never let you fall by the wayside! You're family!

That's truly great news about your new rheumatologist. You are a lot braver than you think. By the way, did you know that May is an exceptionally good month for new beginnings? It is, trust me on this one!

Enormously big hugs!
Jeannie McClelland
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#15 Penny

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Posted 01 April 2009 - 07:05 AM

Janet,

Wooo-hooo! You go girl!

I whooped so loud when I read your update that Loki went into a frenzy of spinning and barking (his version of a happy dance)!

I have a good feeling about your new Rheumatologist since they got back to you so quickly and am crossing everything that will cross that this new beginning will be one of timely and proper care.

You have always had the gumption in you, we just hugged it to the surface. ;)

Warm hugs then rushes to the conga line I see forming
Penny