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Voice Post: Complaints, Neurology, Fears and Hope

neitherday
Date and Time  - Nov. 1st, 2005, 07:36 pm

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“*sigh* A lot's gone on today, and I shouldn't be making another post today, 'cause I need to ration. So, I probably won't make another phone post until at least Thursday evening, if not Friday.
So. Here's what's been going on.
Well, I found out that the complaint forms are utterly useless, and the quote-unquote "civil rights patients' advocate" person is also bullshit. I quizzed the patients advocate (we had a meeting about patients' rights), and the patients' advocate was very very much giving the pro-hospital line to everyone. And I already became suspicious and I was questioning things and talking about meds and what people should consider, and talking about tardive dyskinesia to people, and she was very upset, saying, you know, like, "You should leave that kind of thing up to a doctor, to tell them" and I was like "But the doctors don't tell them about that kind of side effect", and that "you may get NMF and die", even thought it's a rare side effect, I think people should be informed BEFORE they are forced to take these drugs, that there's so many nasty side effects, like diabetes, and withdrawals from things like Paxil, that are almost as bad as withdrawing from heroin. It's insane, the stuff they don't inform patients. So, I talk to patients about it, and apparently, I'm not supposed to do that.

Well, anyway, me and {name}, the patient advocate, had a little talk, and I found out that... yeah, she keeps telling everybody she's licensed through DMH, so she's impartial. But she's NOT impartial. Yeah, she's got a license through the DMH, but she reports to the hospital. She WORKS for the hospital. Her PAYCHECK comes from the hospital. She meets with the staff, before meeting with us, to get on the same page. She's a member of the staff. She pretends like she's our advocate, but she's not. She's just to here to try to give us someone to grieve to, that it won't really go anywhere.

And furthermore, they have the complaint forms. The other night, I was explained to, that we should fill out the complaint forms, and that something will happen when we fill them out. Well, the fact of the matter is that the complaint forms... if you fill out a complaint form, it gets sent to the nurse manager, Miriam. And, she has fourteen days to either... to process the complaint and figure out what to do about it. Now, especially since she's PART of the complaints, often, this really doesn't work out too well. After fourteen days, she gives her verdict, and you get the complaint form back.

Now, you ARE allowed to appeal this, though. However, the appeal goes to... guess who?! The nurse manager, again! Miriam! The same person the complaint went to in the first place. So, this isn't really an appeal, this is just sending it back to the same person. She has another fourteen days, to make another decision, to decide if her first decision was wrong, and that she actually did something wrong, and then she gives it back to you.
After that, you are allowed another appeal. Now, the other appeal is given to Karen Cook, the "patient advocate", quote-unquote, who works for Cambridge Hospital, and is invested in the Cambridge Hospital system, and SHE decides whether to send it on to DMH. If she doesn't, that's the end of the line. And, at this point, it's been two months anyways, because she's got thirty days to do that.

So, the complaint forms, they give you, that they tell you, "Oh, don't tell us what we're doing is wrong, you must fill out the complaint forms." That's not true. They don't do anything. It's utterly pointless. It's to try to make you think that you're able to complain about what's going on, but you're not.

OK. Well, that's the part that I'm angry about. And I've been informing patients, and they don't like it, about the various side effects of their meds, and several doctors have told me to stop it, and I'll tell them, "Show me where I'm wrong." And they can't, because I'm right. They just don't want the patients to know it.

[Partial transcription ends here. This post continues in the comments.]”

Transcribed by: multiple users


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Comments:
[User Picture]
From:[info]messiahdivine
Date:November 1st, 2005 - 11:59 pm
(Link)
Man. The whole thing sounds retarded.

And you are so right about Paxil.
From:[info]electricube
Date:November 2nd, 2005 - 07:59 am

Continuation of phone post transcription

(Link)
The other thing that's going on that's good, is that I did have a CAT scan today, I got to see a neurologist, finally. I may end up on Lamictil, depending on how my EEG shows up, Thursday. I have a sleep-deprived EEG scheduled. She checked me out and said that several of the things I said during our meeting was concerning, and she can't say anything until she sees the EEG results. I don't know how seriously she truly takes me, but she suggests, as I said, Lamictil. Lamictil... I don't know that much about the drug, but I am willing to try it, especially coming from a neurologist, if that seems like it'll help with everything.

My biggest worry is twofold. One, I've heard from several people who've gone through this sort of thing, that it doesn't always show up the first time, because if you don't happen to have a seizure while they're measuring you on the EEG, it turns up negative. And I'm worried that they're only gonna give me one shot on the EEG; if I don't happen to have a seizure while they're doing it, then I'm just... I'm negative, I don't have them, that's the end of the story, closed book, you're crazy, you're faking it, and that's gonna be the story.
My second thing is, what if they DO do repeat EEGs, and it's NOT the problem. I don't know WHAT'S going on, because they can't give a psychiatric reason that it's happening either. And I'm NOT faking it. So what the hell's going on? Something is seriously wrong. I'm I'm really afraid that no one's gonna be able to figure out what it is. And it's just gonna get worse and worse. And I don't want it to, and I'm really scared, because *I* don't know what's going on, and I don't know if anyone's gonna be able to figure out what's going on. I don't know... what if I've got some strange, rare thing going on, that's just...

I don't KNOW what's happening to me. All I know is that I'm not doing it on purpose, I'm not faking it, and, finally, some people are starting to at least listen to me, and take the possibility that it might not be fake. At least there's now the POSSIBILITY, some people are taking. But I'm still worried that if they... my worry is that if they can't figure it out, it's going to go back to being definitely fake. And I can't DEAL with this keep getting worse. They need to figure it out, or I just need to die. because I can't live with it anymore, and I'm not faking it, and I can't live with it getting worse, and I can't deal with not being able to even go to Missouri because I'm gonna fall down twitching in the airport and have airport security harrass the hell out of me, 'cause I'm a tranny acting weird. And I'll never make it to Missouri. And, I can't DO this. I can't fall on the ground, every day, at Stop and Shop. This is very seriously interfering with my life, and it's getting worse. I don't don't want to keep playing - this - THING. I - can't - DO it.

If it can't be solved, I can't keep fighting. I have some hope now. But I also have a lot of... just... I'm just tired, and I don't know if things are going to work out. I'm still scared. I'm still scared. Things may work out. Things are starting to look like, at least people are taking it seriously, but there's a lot of fear, now. I mean, what if they can't find what's wrong? I KNOW there's something wrong. I'm afraid -- what happens if they can't find it?

I don't know... what's going on. Well, again, as I said, I won't be making another broadcast, post, whatever the hell you wanna call it, won't be makin' another one of these 'til at least Thursday, possibly Friday, if I'm too tired and out of it Thursday, after the sleep-deprived EEG; I don't know what kind of state I'm going to be in. But... um, I'll leave another one of these in a couple days. I need to be rationing them anyway, so, it's good. So, have a nice night. There's a lot more that I want to say, but there's just so much time I have on the phone, and there's only so many phone posts I can make. So... again, goodbye.
[User Picture]
From:[info]amber911
Date:November 2nd, 2005 - 07:27 pm
(Link)
About the Lamictil..I'm on it to control my epilepsy. So far so good. There are very little side effects with it. And compared to the other ones I've been on they are much better.

The EEG's? They're useless for trying to find out if you have epilepsy. Cat scans are better for that. But they still waste their time with EEG's. Hopefully the lamictil will help control it though. x
[User Picture]
From:[info]recoiling
Date:November 3rd, 2005 - 06:45 pm
(Link)
1. lamictal is pretty good- i take it and the only real complaint i have is that the pill itself isn't coated so sometimes if you don't swallow fast enough it starts to melt.

2. i'm going to ask my dmh case manager how one goes about making a complaint above the hospital. i had similar human rights abuses happen a few years ago at westwood lodge, and eventually i was able to make a complaint with a state level agency- it didn't change much while i was there, but it added to an ongoing investigation of the hospital which is supposed to be leading to better enforcement of human rights policy.

3. i've had a bunch of EEGs while on masshealth- i'm pretty sure that doctors will repeat the test if neccessary, [i don't know what is deemed neccessary though- sorry]
[User Picture]
From:[info]starlytehu
Date:November 8th, 2005 - 08:18 pm
(Link)
I suggest that you take your experience with the patient advocate, the psych hospital and the er at Cambridge and take it to JCAHO.


Complaint Hotline (including requests for a Public Information Interview)
(800) 994-6610 or email complaint@jcaho.org

here is an MS Word incident form as well. Form