"I'm mad as hell and I'm not going to take it anymore..."

I dont have a clue if my experiences are similar to anyone else's, anyone else at all, in my region, in my state, in the USA, in the world, etc.
I think it would be a good idea if I found out.

I know for sure that I have been incompetently treated in the emergency room when in for seizures. I really think its mostly a matter of the nursing staff not having a clue what to do. Seizures are scary for those who have them, but perhaps more so for those who have no idea what its like and how it works. I sympathize, however, these people are supposed to be PROFESSIONAL CAREGIVERS.
My complaints are as follows, just from my visit today:

1. I was beginning to seize and they asked me to sign a form. The effort to try and sign the form brought on the full blown seizure. And my signature ended up taking up the whole page. Totally unuseable.
2. I was in the midst of a full blown seizure and they were asking me to do things like move my arm over here, etc.
3. They hauled me out of the wheel chair during my seizure and then screamed at me "You're too heavy! You are going to hurt somebody!" when I couldnt walk to the stretcher.
4. At no time did anyone even after the seizure and everything had calmed down did they show me where the call button was. I held my urine for over an hour waiting to ask someone to go (in case they needed a urine sample), ended up ripping electrodes off myself so I could get up and go to the nurses' station to ask. The nurse said yes. Within 1/2 an hour a nurse came and told me they needed a urine sample. I told her about having already gone and that I had no call button.
She said that a urine sample was what the doctor had been waiting for, and this was the same nurse who told me I could go before. I told her I had no call button. She hauled one out from behind some drawers and wires and left without a word.
5. People turned on and off my light without saying a word to me.
6. When they were taking me to get a CT scan the nurses talked to each other as if I wasnt there...the only thing they said to me was, as if I was 2 years old, "the doctor wants to look at your head now" as her way of informing me we arrived at the radiology department.
7. Four times I requested my family to be with me, to which they said that they were going out to tell them come in. The nurses never approached my family, even though they were in the waiting room. The time my Mom asked to see me, they claimed that the doc didnt want me to have any extra stimulis. The only way I got my Mom in was to catch someone coming in the door visiting someone else.
8. When I get myself up to go to the bathroom, my bed tipped at the end I got up from because the side bars were up and had been up for 3 hours even though I had not had any seizure activity during those three hours, and I could not put them down. I believe thats actually considered an illegal restraint.

I understand the necessity of ascertaining whats happening with the physicality of the person having a seizure, but moving and asking them to walk themselves I think is a gross misunderstanding of whats going on with someone having a seizure.
I think a little respect for an epileptic's dignity and humanity is also a necessary improvement.

I would like to know if others have similar experiences or tips on re-educating hospital care staff, to facilitate activism to remedy this problem.

I went to the ER once because i was so sick to my stomach i couldnt keep my medication down at all for a few days. An hour or two after i was admitted they gave me ativan for my back spasms ( they made me lay on my back even though i said i really couldnt). in turn i had a full grand maul, upon coming out of it they promptly asked me If i felt i just had a seizure!! :confused: Then they never documented it at all, never did an EEG, never did well anything but give me the stupid ativan and discharged me a few hours later after i "slept" all my pain, spasms, aura off :mad:

My complaints are as follows, just from my visit today:

1. I was beginning to seize and they asked me to sign a form. The effort to try and sign the form brought on the full blown seizure. And my signature ended up taking up the whole page. Totally unuseable.
2. I was in the midst of a full blown seizure and they were asking me to do things like move my arm over here, etc.
3. They hauled me out of the wheel chair during my seizure and then screamed at me "You're too heavy! You are going to hurt somebody!" when I couldnt walk to the stretcher.
4. At no time did anyone even after the seizure and everything had calmed down did they show me where the call button was. I held my urine for over an hour waiting to ask someone to go (in case they needed a urine sample), ended up ripping electrodes off myself so I could get up and go to the nurses' station to ask. The nurse said yes. Within 1/2 an hour a nurse came and told me they needed a urine sample. I told her about having already gone and that I had no call button.
She said that a urine sample was what the doctor had been waiting for, and this was the same nurse who told me I could go before. I told her I had no call button. She hauled one out from behind some drawers and wires and left without a word.
5. People turned on and off my light without saying a word to me.
6. When they were taking me to get a CT scan the nurses talked to each other as if I wasnt there...the only thing they said to me was, as if I was 2 years old, "the doctor wants to look at your head now" as her way of informing me we arrived at the radiology department.
7. Four times I requested my family to be with me, to which they said that they were going out to tell them come in. The nurses never approached my family, even though they were in the waiting room. The time my Mom asked to see me, they claimed that the doc didnt want me to have any extra stimulis. The only way I got my Mom in was to catch someone coming in the door visiting someone else.
8. When I get myself up to go to the bathroom, my bed tipped at the end I got up from because the side bars were up and had been up for 3 hours even though I had not had any seizure activity during those three hours, and I could not put them down. I believe thats actually considered an illegal restraint.

I understand the necessity of ascertaining whats happening with the physicality of the person having a seizure, but moving and asking them to walk themselves I think is a gross misunderstanding of whats going on with someone having a seizure.
I think a little respect for an epileptic's dignity and humanity is also a necessary improvement.

I would like to know if others have similar experiences or tips on re-educating hospital care staff, to facilitate activism to remedy this problem.

Point 1 They SHOULD have waited until you were "recovered" so you understood what the paper had printed on it and you knew what you were doing. You could have been giving away your bank account for all you knew during a seizure.

For Points 2& 3
Not sure, they should have kept their mouths shut. I think they assumed you wouldn't have heard or remembered what was said.

Point 7: Sounds like what happened with my parents when I was younger. My dad had to act like a football player and basicly FORCE his way in to see me. They didn't like him; but he got his way.

Point 8 The side bars are to keep patients from falling off (rolling off). It's a liability issue with the hospitals. Pretty simple to get those down. Better than having your hands/arms STRAPPED down (had that done before).

Urine sample was to see if a person had been using drugs... don't you love how we are treated? They should have pulled a blood sample to check medication levels if you are on any.

Sorry to hear the facilities are still like that :/ I thought I had it bad a few times.

--Travis

I used to go to a hospital my insurance would cover in the major city I used to live in. My ex used to make sure the paramedics took me there. They would accuse me af being an alcoholic or drug addict every week. The paramedics finally dot tired of coming to my house and took me to the local epilepsy center. I was imediatly diagnossed with complex partial seizures most likely from the temporal lobes. I had trouble there too. I was in the ER once, I'm also diabetic for the past 40 years and lost my right leg, I was on the table waiting for a doctor I think. I don't remember. I guess I had a seizure and tried to run, I do that often. I fell with my prostetic leg off and broke my hip. That is actually more pleasant than being accused of all sorts of other things. I live 50 miles away from that hospital but I still have all my doctors there and everytime I'm hospitalised, I go there.While in the hospital there, I have no complaints.