And We Wonder Why I'm Always MAD

robysue wrote: You would think . . . that the medical community would finally figure it out . . .

Doctors often have a circle of "referral specialists".

You refer to me, I'll refer to you.

Bluntly: You scratch my back, I'll scratch yours.

So, many docs are NOT happy if you choose a specialist outside that magic circle.

Even worse, if you have the sheer gall to want to see a direct competitor . . .

Your original doctors have ways of displaying their displeasure. Some subtle, some not.

IMPORTANT NOTE: Not all doctors are like this. But too many are.

Protect yourself.

_____________________________________________________________

By law those medical records are yours.

Always, always, always get copies of your medical test, diagnostics, office notes, etc.

Keep them in a well organized notebook.

Create a concise summary of your visits, and the results. Make sure a copy of your summary is physically handed off to your next specialist.

I go so far as to test diagnostic CDs on my own computer; it's surprising how many "bad burns" (non-working CDs) you can get.

_____________________________________________________________

Good luck and good wishes,

Mike

Boy, Amos!!! I recognize that "social life"!!! I just went thru it not so long ago. And finally I just said, I've had ENUFF!! NO MORE specialist well-visits! I'll call if I need them, and if they can't get me in in a TIMELY manner, to h*ll w/them, my family doctor and I will work it out. Most of them have taken it gracefully. This going in to see them every 3 months for a "keep doing what you are doing" is a crock! Even every 6 months its a crock. If they spent less time w/these stupid well visits they'd have time to see us in a timely manner when we NEED them!!! I can see maybe the first year til you get to "know" each other, but after that??? Horsepuckies!!!

All I can say is WOW! Shesh. I would be telling the doc to fix this now!!! I don't care if you don't get lunch...I waited two months...and now you want me to wait more!!

I hope they can work you in once he sees your records. And they wonder why patients can be so evil. I got to hand carry my records...do your job and make sure the appointment is set correctly and the records get there....ugh!

Slinky..I know what you mean. I think that I have at least one doctor for each body part. But, thank goodness, so far no GYN.

amos

I agree that using ONE university would be better, but it didn't turn out that way (or hasn't as of yet). I was using one university for years and switched (officially) earlier this year. The "glitch" is that the neurologist at the new university was adamant that I stick with the pulmonologist at the original university, thus the situation with working with different universities. Whether anyone understands (or agrees) why doesn't matter.

Regardless, the referral to the sleep neurologist WAS made by the neurologist at the same facility (not where my pulmo is). I HAVE most of my records from my pulmo & sleep studies and had them packed and organized to take with me. I was never told of the policy that they had to be thoroughly reviewed BEFORE any appointment.

Whoever made the appointment screwed up in a major way. Should I have asked more questions when it was made and perhaps called the sleep neurologist's office beforehand? Maybe I should have, but you know what? I've been doing this now for almost 2 years and am exhausted. I have pushed and pulled, this way and that, at every turn, just to get things to the point they are now, which isn't great. These people are making ME work too hard, when I'm already barely hanging on by a thread.

And I already know how this will end up. I submitted a written release to get all my records from my pulmo sent to the sleep neurologist. But unless I keep calling and asking, I'll never hear squat from them or if I do, it will be MONTHS down the road.

And as I said -- I am exhausted. A patient shouldn't have to work this hard.

I'm surprised a specialist even wants to see your records BEFORE your initial appointment w/him/her!! The ONLY other time I've heard of that was recently a specialist at Mass General wanted to see my brother in law's records BEFORE they would even schedule an appointment for him. (He's the one who has nearly died TWICE supposedly due to celiac in the last year).

Slinky wrote:I'm surprised a specialist even wants to see your records BEFORE your initial appointment w/him/her!! The ONLY other time I've heard of that was recently a specialist at Mass General wanted to see my brother in law's records BEFORE they would even schedule an appointment for him. (He's the one who has nearly died TWICE supposedly due to celiac in the last year).

I was told by my regular neurologist's office yesterday that pretty much all of the specialists at this facility require this -- reviewing of records BEFORE scheduling of appointments. Their reasoning/justification/excuse is that they want to be fairly sure they can offer something to the patient so they don't waste their time or the patient's.

When I was first referred to him, my neurologist at the first university DID send him all my records to review before he scheduled my appointment. Even then, it was a 6-month wait for appointments.

Because it was HIS office making the referral to the sleep neurologist (at the same facility) it seemed logical to expect (or assume) that all records and paperwork were handled before my appointment was scheduled. In fact, when I was called and told of my appointment, I said I had all the records and was told to just bring them to my appointment. It wasn't until I got a phone call yesterday morning that I realized something was really, really wrong.

Madalot wrote: And I already know how this will end up. I submitted a written release to get all my records from my pulmo sent to the sleep neurologist. But unless I keep calling and asking, I'll never hear squat from them or if I do, it will be MONTHS down the road.

And as I said -- I am exhausted. A patient shouldn't have to work this hard.

Well said. It really should NOT be this hard.

When I was at my worst, the one thing that I managed to do right was to put my hubby's name on all (and I mean ALL) of my doctor's HIPAA forms. That allowed me to delegate many of the phone call/phone tag and multiple follow up calls to get the medical records sent (both to us and other docs) for me. It was (and still is at times) a major relief to me to be able to tell hubby, "Can you please keep bugging the doctor's office about this?"

So I'll ask: Is your hubby's name on your HIPPA forms, which allows the doctors' offices to speak to him about your medical records? If so, is he willing to take some of the burden off of you by making some of those necessary phone calls to nag Doctor X about the fact that Doctor Y needs the records sent? And since you've got the important stuff in your possession, why not have hubby make a copy of the relevant records, test results, etc. That way you can mail them on to the sleep neurologist's office with some kind of tracking so you know when it arrive or ask hubby to deliver it in person.

robysue wrote:So I'll ask: Is your hubby's name on your HIPPA forms, which allows the doctors' offices to speak to him about your medical records? If so, is he willing to take some of the burden off of you by making some of those necessary phone calls to nag Doctor X about the fact that Doctor Y needs the records sent? And since you've got the important stuff in your possession, why not have hubby make a copy of the relevant records, test results, etc. That way you can mail them on to the sleep neurologist's office with some kind of tracking so you know when it arrive or ask hubby to deliver it in person.

My husband IS on my HIPPA forms, but dealing with this kind of thing is NOT his strength. I'm the one in the family that handles stuff like this. If I asked him to, he would try, but in truth, he wouldn't be very good at it.

Madalot wrote:

robysue wrote:So I'll ask: Is your hubby's name on your HIPPA forms, which allows the doctors' offices to speak to him about your medical records? If so, is he willing to take some of the burden off of you by making some of those necessary phone calls to nag Doctor X about the fact that Doctor Y needs the records sent? And since you've got the important stuff in your possession, why not have hubby make a copy of the relevant records, test results, etc. That way you can mail them on to the sleep neurologist's office with some kind of tracking so you know when it arrive or ask hubby to deliver it in person.

My husband IS on my HIPPA forms, but dealing with this kind of thing is NOT his strength. I'm the one in the family that handles stuff like this. If I asked him to, he would try, but in truth, he wouldn't be very good at it.

Ah shucks. It's just the reverse in my family: Hubby is great at dealing with this stuff, and I'm horrid at it.

((( hugs )))

It really is... hmm... I don't really know a word for what all this is.. unfair, illogical, an inadvertent form of torture... ? Yes, the last seems to cover your situation pretty well. To be driven from pillar to post when so very sick is crazy. Getting proper healthcare is a full time job for those who are very sick... and they are VERY SICK, duh!!! Otherwise they wouldn't need all these specialists. It makes me so mad for you. But hopefully, this sleep neurologist will have time to review your case before the appointment, so that you guys can get down to business without a lot of fuss.

Thinking of you.

((( mad )))

Maddy,

Gee, you must feel like a pin ball...bouncing off one doctor to another. My prayers for you are that someday, somehow the right doctor will come along who will bring some relief for you. At least, please know that there are those of us out in cpap cyber space who care for you.

Love,

amos

It seems logical and good common sense for a specialist to receive and review your med recs BEFORE scheduling an appointment. That way if he doesn't think he can help or isn''t interested the patient can be referred on. Its just that I don't see many being willng to actually look at someone's med recs who may or may NOT end up w/an office visit and consultation if they aren't getting paid for it. And I sure have never seen it being very helpful to bring them w/me tho I do w/new doctors since they never wanna take up consultation time going thru them. So WHY did we even provide them? WHEN DO they look at them? Ever?

Slinky wrote:It seems logical and good common sense for a specialist to receive and review your med recs BEFORE scheduling an appointment. That way if he doesn't think he can help or isn''t interested the patient can be referred on. Its just that I don't see many being willng to actually look at someone's med recs who may or may NOT end up w/an office visit and consultation if they aren't getting paid for it.

When I was first referred to the new neurologist, not only did he review my records (extensively) beforehand, he also spoke to my original neurologist numerous times about me and my situation. They still discuss my case on a regular basis.

I am perfectly okay with them wanting to review records beforehand and am also okay with my bringing them for a quick review during an appointment. I can, and will, work with whatever policy they have.

But this was a screw up, plain and simple. And I am so sick of these kinds of screw ups (the list in the last two years would take HOURS to compile) that I could spit.