It is
Joined: 07 Apr 2003
Posts: 2
Posted: Mon May 12, 2003 8:47 am Post subject: difficult
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to be persistant when you feel like c__p from dialysis, because you're going through all kinds of problems with poorly trained techs. On my day off, the last thing I want to think about is dialysis. Then if I raise too much of a stink and they harass me and kick me out, I've got an even bigger problem, because there's no other units within driving distance. Plus, even if there was another unit, you don't have much time to switch to another unit, because you have to turn right back around and go to dialysis the following day. With dialysis, a patient has his hands tied because it takes time to make other arrangements and many times it can't even be done. The units know we're in a catch22 and thats why they snow us and treat us with disrespect. But thank you for providing this info. It's just difficult to carry out when there's nothing in place protecting us.
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advocate
Joined: 25 Apr 2003
Posts: 20
Posted: Tue May 13, 2003 5:05 am Post subject: Keep a record and cc's to others.
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This is why the clinics get away with this. It takes a
ave patient to speak out. Most cases they will back down and that is why they are not doing this.<
><
>You need to keep a paper trail or a voice recorder. If it isnt written it wasnt said. I personally have taped conversations with officials, but have made sure that I was in Oregon. I am sure that there will be many red faces when they deny that they said something. It is simply on tape, or has been journaled.<
><
>If you need help, ask. If you need to go the attorney route, just ask. If you send cc's to dialysisethics, and to National Action Network, just mail it to us and we will keep a file.<
><
>This is your right as a citizen, but if there is no trail,its your word against theirs. Remember they have the paper trail.<
><
>Arlene
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aprnjam
Joined: 28 Apr 2003
Posts: 85
Posted: Tue May 13, 2003 11:09 am Post subject: Re: Keep a record and cc's to others.
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I know you feel like c*** after dialysis, but like Arlene stated, the only way things are going to change is if people stand up to them. Get a tape recorder and document everything. Then you have it on tape. They cannot back down from a tape, there is no "he said" "she said." While I realize that it's a Catch-22 situation, people have to start standing up for their rights. Your rights have been violated and it plain just not right or fair. But we, as the patient, have to make the stand and let them know that we aren't going to take it. Yes, there are risks involved in standing up for your rights, but while DEO is great, and they advocate for you until issues are resolved, you have to take the initiative in making the complaints and letting them know there is a problem. For them to help you, they have to have the proof to back it up. I don't mean to sound like I'm preaching at you, but we, as dialysis patients, have to take the initiative and ensure that DEO has all the evidence they need to advocate for us. They can't help if they don't have the information and evidence to make the clinics back down. Complain and keep complaining, and we'll get things changed!!!!
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The reality
Joined: 14 May 2003
Posts: 1
Posted: Wed May 14, 2003 8:08 am Post subject: is
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what you are offering is not enough. Don't misunderstand. I know you think it is enough and that this is the thing that will accomplish the goal, but you are asking the patient to be like a suicide bomber. <
><
>You know the patient feels ill from the poor care, but you don't really know just how ill. When you are ill do you take on the world that day? No, you wait until you feel better. Dialysis patients are in a cyle of feeling ill due to poor care. <
><
>Add to this, this is like no other battle, because the dialysis patient can not get away from the enemy. If one doesn't like the service they get in Kmarts, they can go across the street to Walmarts. If one doesn't like his family physican he can fire him and get another one. <
><
>Not so with dialysis patients. The unit may be a monopoly, or there are no better units in the town or within driving distance, the staff will certainly ostracize the patient and could even endanger him.<
><
>Personally, I woudn't care if the staff did not speak to me, but what I can't tolerate is being shorted on care, being purposely witheld info on my tx and being harassed while I'm on the chair with needles in my arm, unable to defend myself, and the possibility of them putting someting in my lines that could hurt or kill me. <
><
>You may think, they wouldnt go that far. If you could observe some of the maniac nurses/techs I've had you would question your safety in this respect too. I've had staff who sadistically joke about how they can just give you a little cramp or stick you a little wrong if you give them a problem. I consider myself a strong person, but I'm not a fool. <
><
>You've got to give us better back up. I know there's nothing more you can do at this point. This should be the kind of thing that is fully protected if a patient has a complaint and that's why we're trying to get protections in place. But there must be a better strategy because your current one is too stressful and risky. <
><
>When advocating using a taperecorder, do you mean for phone conversations or a hidden one while on the chair? <
><
>I am willing to do anything I can as long as I feel safe enough doing it. I'd like to be able to have a hidden video recorder that would tape the unprofessional behavior and
eech of asceptic that goes on in the unit. <
><
>But, until I know that I will not be threatened, kicked out or physically harmed if I turn in surveilance info., it's a risk I'm not prepared to take.<
><
>If my life didn't depend on it that would be different. It's not like a job you can quit and go out and get another one. This is a life.<
><
>I hope I have explained my view clearly enough for you. I am for any measure that will what the units are doing, but at the same time, patients need protection while trying to expose them. There is nothing to fight with if one loses his life attmepting to expose the units.
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left out
Joined: 14 May 2003
Posts: 1
Posted: Wed May 14, 2003 8:13 am Post subject: the word
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expose
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You can
Joined: 15 May 2003
Posts: 1
Posted: Thu May 15, 2003 8:07 am Post subject: do something.
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You can hand out flyers at Town Halls, Churches and hang them up in public areas.No one will know you. <
>You can contact your representatives. To stay silent is what has let this continue.<
>You can do something, be it through a friend,family member.<
>
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Now that
Joined: 15 May 2003
Posts: 1
Posted: Thu May 15, 2003 10:28 am Post subject: more of a
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strategy is coming together I can see how this is possible. This is what I have been waiting for. The strategy needs to develop more, but if today is any indication, it will.
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leadsag
Joined: 31 Oct 2002
Posts: 263
Posted: Thu May 15, 2003 10:41 am Post subject: tape records.
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/>
We were 'forced' to sign a document saying that tape recorders and camera's were not allowed in the unit. Bringing one in to the unit would be grounds for termination of treatment. Guess they must have things to hide.
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oh really
Joined: 15 May 2003
Posts: 1
Posted: Thu May 15, 2003 11:28 am Post subject: This is a new one
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on me.
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patient
Joined: 29 Oct 2002
Posts: 137
Posted: Thu May 15, 2003 9:57 pm Post subject: tape recorders & camera's
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i would never sign such an agreement, this clinic really must be doing things all wrong.
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ptsw
Joined: 22 Jan 2003
Posts: 24
Posted: Fri May 16, 2003 2:10 am Post subject: Bringing in Tape Recorder/Camera
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Though this can be used to protect the patient from horrible staff members, it can also be used against patients itself, therefore
inging any type of recording equipment is against the Privacy Act (HIPPA) and
eaks general confidentiality of the patient.
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patient
Joined: 29 Oct 2002
Posts: 137
Posted: Fri May 16, 2003 4:05 am Post subject: tape recorders & camera's
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Have been advised that nannycam's are being used in some clinics and are quite effective. Have not spoken to person since the new HIPPA regulations have come into play.
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Taping
Joined: 16 May 2003
Posts: 1
Posted: Fri May 16, 2003 4:20 am Post subject: Documentation
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I have contacted consult on this issue. Some states do ban taperecorders, others dont. Some states you need permission.<
><
>As far as them being used against you, how so? When I taped it was in Oregon,I also tape for my own records at times. <
><
>But I am sure that ptsw would agree with me on this....<
>That a written journal by the patient is legal in a court of law, it can carry the same weight as the clinics or physicians side. This has helped us in many of the law suits that are filed and being filed.It is a paper trail and a patient needs only to get a journal book and date,time and anyone that was close by. Some of these journals have helped other patients, in one case in particular, another patient was documenting and gave it to the attorneys for the patients family.When we advocate for a patient, we keep a file on that patient and
ing everyone in to accountability. We go for the head of the corporation and pierce the veil of corporation. This
ings all players into accountability. We have two cases now in Texas....One that will
ing many into accountability. We cannot fight unless you give us something to fight with, many patients have come in after the fact and it makes it difficult for us. Not impossible, but difficult. <
><
>This is your only protection and you also have the right to review and challenge anything in your files. Our attorneys have state that you can have your side exsponged, if they refuse you write a letter and state that you want it in your medical file. You need to certify and register that letter.You can get the certification slips from the post office free. Then at the bottom of the letter list this number on your letter at the bottom.<
><
>But remember that you are not
eaking your confidentiality of yourself. But I will find the list of states that you can record. YOu just have to be sure that you dont violate another patients rights. <
><
>BUT IF IT ISNT WRITTEN, IT DIDNT HAPPEN! You should journal the same day as it is still in your mind. Should of's doesnt cut in in court. You can protect yourself in the event you need to show a pattern. You may not need it today, but you may next week. I have kept a journal of every person that I contact and phone numbers and conversations. Much I had forgotten, but it is invaluable to attorneys and press!<
><
>If it<
><
>
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ptsw
Joined: 22 Jan 2003
Posts: 24
Posted: Fri May 16, 2003 4:28 am Post subject: I agree
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Yep, if it isn't written it didn't happen (and sometimes even if it is written, it didn't happen).
