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Lack Of Communication Between Physicians


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#1 Tammy

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Posted 12 September 2007 - 06:14 PM

Hello again everyone. As most all of you know I am going next month to the rheumatologist for CREST tests and to see if I can't get something more done for my Raynauds. I went Monday and picked up some medical records that I was asked to take to my appointment and of course I had to look over them. :unsure: On the endoscopy that the surgeon did on my stomach he noted that I have antritis without the presence of H-pylori and recommended that I not use asprin or nsaids, I knew nothing of this and primary care physician but me back on Feldene a few weeks ago for the arthritis in my hips. I am also having to go see an endocrinologist next month and if I can't keep 2 dr's on the "same page" how do you handle 3 or 4? It seems that I can't keep track of much anymore (I had to turn over the bill paying to my husband because I was forgetting stuff every month...lol). How in the world do you all do it?


Best wishes to all~~ Tammy

#2 summer

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Posted 12 September 2007 - 06:37 PM

Hi Tammy,

I see a Rheumatologist at a Hospital and all of my other specialists are there too.
I found it much easier and convenient as they are all at the same place!

If my rheumatologist needs to speak to another specialist they are usually are all within easy reach of one another.

I also have all of the necessary test done at the hospital as well.

Earlier on in my diagnosis of Scleroderma I was seeing a rheumatologist in private practice, I felt as though I was driving all over the place for tests and she wasn't very communicative which made things harder.

This is why I transferred to the hospital.

Take care
Celia :D

#3 peanut

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Posted 12 September 2007 - 07:06 PM

Managing multiple doctors is a challenge. One idea is to keep a copy of all your doctors notes & tests. Some use notebooks for this. I prefer electronic copies through the use of a scanner. I also make a journal if you will dictating what the doctor's said to me, my treatments, follow ups and any symptoms I might be feeling. That way when a doctor asks how long have you been feeling this way I can give them a date rather than guessing because I never remember. (I never remember anything...)

Doctors have a lot going and I've found that a gentle reminder is good now and again.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#4 Sweet

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Posted 13 September 2007 - 10:27 AM

It is sad isn't it?

I take care of all of it myself. After each medical appt. I have, within a week I call back to the Medical Records department and have them fax me the notes and labs for that day. Then I fax them to the nurse of all my other doctors. It's the only thing that has worked for me.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 summer

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Posted 13 September 2007 - 12:16 PM

Hi Sweet,
I went to the medical records department at the hospital where I see all of my specialists. They told me to gain access to any of my records ,I had to fill out a form, pay $22.00 for registration and only then would they give me any copies of any test results that I needed.

I was not prepared to pay $22.00 and left very frustrated!

You are lucky that you were able to gain access so easily.

Take care
Celia

#6 Sweet

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Posted 13 September 2007 - 01:08 PM

As a patient, everyone has access to their medical records. Most clinics won't charge a patient for a copy of their own record, especially if you just get one or two pages a time like I do. I make sure I ask for it fairly quickly after each visit so they don't have to copy a book.

If you've never had a copy of your record they may charge you at first, but hopefully afterwards they won't. Again all clinics are different. I think it also helps that I'm in the business.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 truman

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Posted 15 September 2007 - 02:25 PM

I have become very aware that my general practitioner has stepped up to the plate and taken a very active role in my condition. He had called the rheumatologist and told her she was not taking an aggressive approach to my condition. In addition, he has begun to check up on me to see is I've been to required tests and procedures. He states this is not his specialty, but he seems to be trying his best to make sure I do what is necessary regarding tests and follow ups with other physicians. In today's world, I find his concern a very comforting asset. Few doctors, if any, remain with that type of dedication to individual patients.
Tru

It is what it is...........

#8 janey

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Posted 15 September 2007 - 04:45 PM

Tru - Good for your general practitioner! It's always nice to have one of your doctors step up and take the lead.

Like Celia, all my doctors are with the same hospital but because of reorganization, they are now at different locations across the city. Thank goodness for computers. My rheumatologist is my lead and I see him every 6 - 8 weeks. I go in with a list of things to discuss and if I've seen another doctor or taken another test, it's on the list. He always looks up the notes from the other doctor's visit or test results. In other words - my rheumatologist is always keeping up with what's going on in all areas. If he sees that I falling behind on a test, he'll schedule it, then I'll make an appointment with the respective specialist. It works quite well.

Oh - all my other doctors know that the rheumatologist is the lead so they don't prescribe any additional drug without letting the rheumatologist know.

Big Hugs,
Janey Willis
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(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
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International Scleroderma Network (ISN)

#9 WestCoast1

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Posted 15 September 2007 - 05:24 PM

Tammy,
###### I never really tried to get all the info to all the doctors. I do however get copies of all of my labs and tote them all from appointment to appointment. I ask the nurse to make and keep copies of all of the labs that they dont have already.

After every procedure or appt. I ask to have copies of it faxed to the rheumatologist. I have noticed that sometimes this doesn't get done.....

I wish that I had started doing what Sweet does...boy you have it together! I think that it really does help that you are in the bizz and already know which loop-holes to avoid.
*WestCoast*

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#10 bookworm

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Posted 15 September 2007 - 09:16 PM

Ced,

I just read something lately that was a surprise to me. If you are in the United States, the Privacy Laws, HIPPA (can't remember what it stands for), state that all patients may have copies of their medical records free. (or something like that)

I believe it said they were allowed to charge the actual cost of making you copies, but not some whopping big bill.

The funny thing was that my 90-year-old father and I had just asked his eye clinic for a copy of his records to give to the Veteran's Administration and they were going to chage us for that, until they realized it was for the VA or they realized he was a veteran (or both). It turned out, Veterans get their records free. But, apparently, he didn't have to be a veteran to get free (or cheap) copies because the HIPPA law requires it. I plan to look that up and I'll post it on here, but in case I don't (I've been having trouble getting into this site, for some reason!) you can look it up. Just do a search and ask for HIPPA.



Mary in Texas

#11 Tammy

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Posted 16 September 2007 - 10:57 AM

Thanks so much for the replies and advice.

I would love to have all of my physicians in one palce but when you live in a rural area that is very difficult. The few specialists that we did have close to this area have almost all transferred their practices to the northern part of the state where the population is booming. The rheumatologist that I am going to see on the 4th is over 2 hours away and the endocrinologist is even further in the opposite direction (I am going to Tulsa for the endo, she specializes in pituitary dysfunction), my pc is in the town that I work in but I just found out that she is having a baby and will be going out on maternity leave in about 6 or 7 months. I thought about changing the rheumatologist to one in Tulsa as well but it has taken so long to get in to see this one that I really hate to change and have to wait again.

Most of the physicians reoprts that I have had to get to take to the rheumatologist were free for the first report but I had to pay my ob/gyn $25 for his. I think that I will try keeping a journal for each physician and have decided that if they tell me something that I don't understand...ASK!

#12 Kamlesh

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Posted 16 September 2007 - 05:29 PM

Hi Tammy,

I know what you are saying. I have been fairly successful in managing communication between by my doctors as I take ownership of the communication. For every visit to a doctor, I always have written list of issues, latest list of medications, and a list of my doctors. I also include any updates to my record from any of my dozen doctors. Whenever I go for any tests, I always ask them to mail me a copy of the results and also keep a copy of doctors’ notes. I continue to update my medical records continuously and it has now grown to over 300 pages.

If I have an issue which involves multiple doctors like Rheumatologist, Pulmonary specialist, GI specialist and/or my general practitioner, I document the issue in a great detail and fax it to all involved doctors. I do extra efforts to get everyone involved, but by doing this it becomes their responsibility to respond back to me or talk among themselves before coming to an agreement.

Our health issues are our responsibility and everyone needs to find what works for them. I have been fairly successful with above technique.
Kind regards,

Kamlesh


#13 Tammy

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Posted 16 September 2007 - 07:28 PM

Kamlesh, thank you for the tips! Most of the dr's that I am currently seeing will provide their dictations to each other but at this point I don't know who is paying attention to what! All of the blood tests that I have had done in the past year have a low Bun and the latest has low Bun and low BUN/ creatinine ratio, so low that it would already put me in a stage 2 of chronic kidney damage, no one ever mentioned any of this to me so needless to say not one of the dr's are even checking it periodically... but there it is in the medical records! I am planning on bringing all of this up to the rheumatologist next month even though I have no clue if it is at all realtive to this but you have all tought me that being my own advocate is the absolute best thing that I can do for myself and I can not thank you all enough for all the help that you have given me over the last couple of months!!


Big Hugs to You All!!!

Tammy

#14 Sweet

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Posted 17 September 2007 - 11:45 AM

In regards to Mary in Texas post, it's HIPAA "Health Insurance Portability and Accountability Act" :)
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#15 Kamlesh

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Posted 17 September 2007 - 07:07 PM

Tammy,

I have developed knowledge about what to look for kidney and liver functions. I have go for blood test every 4-6 weeks as I have standing order for blood work along with request to receive copy every time. I normally get blood report in 48 hours and look for any areas outside range. For PFT, I maintain a spreadsheet for each quarter’s result. Any thing out of ordinary, I discuss with my rheumatologist or pulmonary specialist.
Kind regards,

Kamlesh


#16 Piper

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Posted 18 September 2007 - 06:46 AM

Hi, This is really interesting from a Canadian's perspective. My G.P coordinates everything so I don't have to worry about that but.... I also never see lab reports, test results or what is written in the Dr.s notes unless the Dr. wants to share it. Thankfully I have an excellant G.P who seems to stay on top of everything.
I didn't even know that my WBC was always low until just recently. Is it the same in your province Gizzele?
Hugs, Piper

#17 truman

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Posted 18 September 2007 - 12:07 PM

Just got back from having my toe re-examined by my general practitioner. It was extremely nasty looking today, and I was sure he was going to send me to a wound care facility, but he said just begin to soak in salted water and see him in a month. He also said all my tests would indicate to him I am perfect. Is that wild? He said it still throws him of my illness based on all my tests with him. Maybe ANA testing should be mandatory so patients can get a true visual of their health! I expressed my gratitude of him going above and beyond in his concern for me and his efforts in directing me in the right directions and tests. He was almost embarrassed and thanked m for the compliment. It was not a compliment, but the truth. He said he's had some patients who refuse to follow up and are afraid, so he needs to make sure that things are followed thru (me being one). Toe really hurts, just relaxing as much as possible and watching TV.
Tru

It is what it is...........

#18 Tammy

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Posted 18 September 2007 - 05:47 PM

I am so frustrated!! The endo dr in Tulsa has now refused to see me because I can not get records for the past medical history of the pituitary tumor. I spent most of my breaks (including lunch) on the phone with hospitals and clinics. I was transferred from medical records to medical archives the lady in archives said they only keep them at the facility for 10 years, I asked if they destroyed them or just moved them to another facility she wasn't sure so I asked to speak to someone who would know, that lady was "...either on another line or away from my desk..." so I had to leave a message and guess what...she never returned my call! My mother was able to go to her benefits counselor and with the help of their corporate office, they pulled up the insurance claims that had some of the info. My pc dr wants me to write down everything that I remember about it but for goodness sake, I was barely 17 and scared to death not to mention that most of what they said was way beyond my anatomy and physiology class!! With everything else that is going on right now, I am positively at my witts end! Does any one have any suggestions?!?

Sorry about the venting!

Tammy

#19 peanut

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Posted 18 September 2007 - 07:10 PM

Tammy Dear,
How frustrating. It's like they hold you responsible for information you didn't know you needed at the time. Get the name and extension of the medical records person and if they can't help you ask to speak to their supervisor. Getting an - I don't know or being passed off to leave a message - as a response isn't very professional.

Can your tulsa endo run his own tests to at least determine your current state?

ugh! sorry you have to go thru this.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#20 Buttons

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Posted 19 September 2007 - 02:02 AM

I have been reading everyones posts with much interest. I'm from the UK & we don't get to see any letters, results of tests etc at all. I find that my rheumatologist says one thing to me & then seems to play it down with my general practitioner. Even when asked for clear explanations of what is going on I don't seem to get clear answers. For example- I have been told that my echocardigram showed stiffening of the right side of my heart (I do get breathless & now need to take things a little more slowly) but when rheumatologist wrote to my general practitioner he said it was fine, But it was the cardiologist who also commented on it while doing the test. So who do I believe?
I feel that I would prefer to know what I have to deal with & just get on with life.

Jensue