Re: Patients' Bill of Rights Act of 1998 Jill

[Guest guest]

In a message dated 12/18/03 8:20:55 AM Eastern Standard Time,

pghand@... writes:

<< can this help pave the way to better treatment or does it offer

grounds for action where there has been a violation is there any recourse

in the hospital setting immediately or not? >>

It mostly offers grounds for action if there is a violation. There may be

some recourse immediately as most hospitals have patient advocates, but using

this resource while hospitalized could have negative repercussions down the

road. Is this how or why the Patient Bill of Right's was originated? No, but

unfortunately it is the reality. My recent past experiences with four different

hospitals has taught me, that it does not matter where you go, or how big the

name, how you are treated is directly affected by the doctor treating you and

if you are lucky enough to land on a good floor.

I have also found, that there are many laws on the Patient Bill of Rights

which most health care providers make it very difficult for the patient to

benefit from, such as your right to your own records......yes, you can have

them,

but it costs money, and there are certain procedures which need to be followed,

or you can't have them. I wanted to bring some of my films back to Buffalo

from s Hopkins and they wanted $10 per film. that's right, not per test,

but per film.....it would have cost us close to $2,000-3,000 to bring them back.

I gave up......I couldn't deal with all the red tape. I asked to at least

have paper copies of all tests and medical record.....I didn't check it before

I left, as I was still too ill......they gave me everything BUT all the test

results!!!! No CT, MRA, or lab reports. I could have screamed when I figured

that out.

I could go on and on about all the infractions all the time....but you know

when you have VEDS, it gives the doctor the license to do whatever they want to

you and they don't have to answer, no matter how negligent. I have been told

in the past, it is so rare, there is no treatment protocols, there is not

enough knowledge about the disorder, so there is no way for a doctor to know how

to treat, or for that matter know about diagnosing, and therefore, no way to

predict complications. Believe me, I have been told this by lawyers...it

doesn't matter that the doctor should have listened to complaints just like he

should with every patient.

I don't think I filled you in Jill on everything that happened after I talked

to you the first time, did I? Believe me it is a horrible story, not anyone

wants to hear about on the list....to scary......maybe I'll email you

privately, or did you hear through the grapevine? I don't need to tell the

story

again if you know it.

Well, anyway, hate to be so negative, as it is usually not my style, but it

is the reality of the healthcare situation and will not be improved unless it

is talked about/addressed. I don't think I would be here if I didn't have

medical knowledge and I didn't fight for everything. Ahhh.....feisty, yeah,

that

is what they call it, LOL!!!!

Hugs,

Sue