Getting the Word Out
Joined: 16 Jan 2003
Posts: 2
Posted: Thu Jan 16, 2003 10:07 am Post subject: Educating Patients, Caregivers and the Public
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It is important to get the word out that DE is their advocate for education and patients' rights. One idea is to have someone who is artistic design handouts and posters to distribute in units. Other groups are doing this now and so should DE. The unit social workers sometimes have a list of educational resources they hand out to patients, but its a half hearted effort with little explanation of the resouces. At present, the industry publications have a monopoly on the lists. We need to get the right source into the patients' hands--DE! Any more ideas???
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ridgerunner
Joined: 11 Jan 2003
Posts: 101
Posted: Thu Jan 16, 2003 1:30 pm Post subject: getting the word out
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that is the only way we are going to get changes. i gave a talk to the local exchange club. we are going to have to educate the people the adverage patient is so sick and has to take treatments under such poor conditions they feel like they are beyound any help it is going to be a long hard road. the public are going to have to realize that ESRD affect every one not just some in a poor select group. look out you may be next.
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Getting the Word Out
Joined: 16 Jan 2003
Posts: 2
Posted: Thu Jan 16, 2003 8:03 pm Post subject: Yes
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anyone who can speak to civic groups would be getting the word out. And anyone of us who is not shy could easily talk about ESRD and answer questions providing a great service to the public. <
><
>I'd like to concentrate though on how we can get more patients aware of educational and patients' rights options through they're being able to find DE. Most patients have never even heard of DE. How about instead of a big, happy poster on the unit wall for NKF (who does virtually nothing for patients), there was a poster for DE? How can we get DE listed with the industry literature/kidney associations on social worker handouts? <
><
>Another kidney board is in the process of doing this right now to
ing attention to their group, because they think getting people to their board is the best way to spread education. We can do the same! They are trying to come up with a consistent design for advertisements, posters, handouts etc. so that patients etc will begin to recognize their group. <
><
>There are a lot of patients who will never be able to help themselves, but there's a middle grouping of patients who I believe would help themselves if they were given a little kick start. Even the patients who most want to help themselves don't always know where to look. It took many of us months to find the help we needed. So, let's
ainstorm.
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ridgerunner
Joined: 11 Jan 2003
Posts: 101
Posted: Fri Jan 17, 2003 12:38 am Post subject: information to the public
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we are going to have to get the information to the general public in order to get changes. they are adaquate treatment. beds to take treatment in. have you ever taken a long trip for over six hours and nevt got out of a seat. we are going to have to speak at service clubs. the people there are the ones who run things. the patients are so sick that they cannot learn. it is going to be a hard road.
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patient
Joined: 29 Oct 2002
Posts: 137
Posted: Fri Jan 17, 2003 4:50 am Post subject: DE Posters
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I think it would be a good idea to have DE posters hanging in waiting room at dialysis facilities. Patients would then know where to go to get questions answered and find out about options etc.
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Opinion
Joined: 17 Jan 2003
Posts: 13
Posted: Fri Jan 17, 2003 7:12 am Post subject: Our day is coming
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It appears that since we have no funding and are in support of anything that will help patients,we are there.<
><
>The fact that we dont take industry money has actually help in getting the information out in a public manner.Our journey is somewhat different and we are not exactly em
aced by the industry. This has payed off in a different way.Our job is to make all patients safe and to ensure that they have civil rights and human rights included in this.To ensure patients the choices of treatment.<
><
>We have put HCFA on notice that we hopefully will be joining a much larger group who will ensure that all patients are not abused and receive the proper dialysis and not one size fits all. We have tried the political horse and pony show and realize change will only come when the head of the corruption is gone. To do anything less is to sell our patients out. To contine to allow the government to think that we here are going to take an olive
anch and except a bandage on a raging sore.The NETWORK needs not to be in charge of patient complaints,the sale of human life should not be allowed. We are in the best position possible now and will be able to be heard and taken serious. <
><
>Our attempt is going public and we will be known nationally really soon. We have asked the industry to work with us,ie the NETWORK and we became the enemies for protecting the patients...something is wrong. They were set up to protect you.<
><
>I personally will help any legislation that will benefit the patients,but am also aware of what the industry does with the patients. They will hide behind the patients to get them more money in their pockets. I do not see the industry ie: National Kidney Foundation seeking to help
ing the industry in line. They are not the patients friends and have known the abuses that have accured with the documents over 3 years ago.They are boarded and funded by the industry and work for them. Stop and think about it....somewhere is the NKF and the industry on any monetary issue.....<
><
>Until you as patients realize what is going on,you are the industries yes men. Harsh words,true,but if it benefits you go for it. I will support any patient that is abused and until the industry is accountable.I am totally in support of home hemo and more dialysis. But we need to continue to clean up the industry,otherwise it is just a bandage on a festering sore. Its a great start,but more work needs to be done at the Federal level to clean up.More dialysis is needed and choices.I support this.<
><
>We will have the public awareness and the government will have to explain the NETWORKs and the fact that they have been allowing the patients to not have the same rights as anyother citizen. The NKF also should be ashamed of themselves. We are going to have major press and an organization that will not sell out to the government promises and the patients are no longer the stock commodity of choice.<
><
>The ESRD Network has already received a call from our allies,they will be taking us serious as is the government. <
><
>We will be getting major press soon. Count on it,we will have the platform.<
>Arlene<
><
>
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Founding RN
Joined: 10 Jan 2003
Posts: 172
Posted: Fri Jan 17, 2003 1:30 pm Post subject: Rallys and posters
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Ridgerunner you have hit it on the head. DE can only do so much and right now we are swamped with dealing with the national exposure that is being organized and will soon be in newspapers and on TV. Now is the time for patients, their families and others interested in this topic to get out the word in your own communities. Now is the time to not only educate yourselves on what the public might ask each one of you in your own communities, but to also have information you can hand out.<
><
>Is there anyone or a group of patients who would like to submit
a 1 page poster/ handout that we would post here on the site that everyone can print off and use to get the word out? We are looking for a new logo for DE. Any suggestions? Please send it to the DE address or fax it to us.<
><
>Suggestions of information to include the following:<
>DE mission statement<
>Local contact phone number for local suport group<
>DE phone number <
>DE fax number<
>DE E-mail address <
><
>This is a real opportunity for those of you who wish to start support groups in your area and help get the word out on the local level.<
><
>Founding RN
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ridgerunner
Joined: 11 Jan 2003
Posts: 101
Posted: Fri Jan 17, 2003 2:37 pm Post subject: getting the word out
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i believe we are beginning to focus on the right issues. treatment so inadaquate that is destroyes a patient ability to think. treatment so horrible that a patient can not wait to get out. patients are put under so much mental stress and fear for their lives if THEY MISBEHAVE.yes it happens and this is the norm.
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Opinion
Joined: 17 Jan 2003
Posts: 13
Posted: Sat Jan 18, 2003 6:42 am Post subject: Patient buddies
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You create a problem patient by not dializing properly or enough. A patient has a time slot and the patient's personal needs are not met,the clinic figures out what slot you belong in to benefit the efficiency and maximize the dollars. The patient is changed or rescheduled at wim. To a patient they are moved from friends,a chair by a friend or a chair becomes very important to the patients. I worked in a clinic and patient who were having too much fun were scattered,after all this is a medical facility..It becomes a source of security.<
><
>In other words the patient can become peranoid just due to an improper electrolyte balance.It is alot of times clinic caused. 1) by improper dialysis 2) lack of education.3)lack of patient rights and abuses in far too many clinics.<
><
>The industry has become use to just ousting out a patient and they are accountable for some of the behavior. <
>How many times can a person be abused,needs not met and just have had enough abuse and with no where to go for help. This is what happens in a lot of units across the US.It takes a
ave patient to stand up to a clinic or even question. Retaliation is common.<
><
>Everytime I am asked to advocate for a patient,I realize this is a special patient with courage that personally it would be hard for me.A patient has to face down the dragon each time they go back to a unit. It takes a special person and we will always respect that trust.We need to group together and when a complaint comes in we can buddy them up with a patient to communicate with and to support them as we are advocating. I can not imagine how lonely and fearful it is. Another patient does and can relate. This is what we should be working on is to have volunteer buddies.I cannot tell you how much I respect the patients we have and those who find us in a time of need.It takes a special kind to take a stand,to overcome fear and find courage.<
><
>Please email or go into the "How to Contact Us" portion of the site,we have many patients across the State. But when this goes public I would like to have volunteers to help with the flow that will be headed our way.<
><
>Arlene<
>arlene@dialysisethics.org
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jfwag
Joined: 11 Jan 2003
Posts: 140
Posted: Sat Jan 18, 2003 11:38 am Post subject: Founding RN...
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yes I will try to concoct something, hand out etc... Is this site able to take graphics #1, so that it can be posted? # 2. A site called Flamingtext.com has graphics that we can make for free and then use. There will be some other technical questions that need to be answered that I am sure I will have. I'll play around with it soon.
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Founding RN
Joined: 10 Jan 2003
Posts: 172
Posted: Sat Jan 18, 2003 12:27 pm Post subject: Poster/ Handout
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Jfwag,<
> I am not sure what this site will take. You will need to contact the webmaster and ask him. Thanks for being willing to do this. <
>Sincerely,<
> Founding RN
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brenda
Joined: 28 Oct 2002
Posts: 103
Posted: Mon Jan 20, 2003 2:10 am Post subject: So right Ridgerunner
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It's hard enough to under go the dialysis treatment itself both emotionally and phsically, then to have threats and stress cast upon you on top of it by the Industry and some workers,(or henchmen). Count on Northern Illinois here as far as the volunteer stuff Arlene. YOu know I will do what I can.
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jfwag
Joined: 11 Jan 2003
Posts: 140
Posted: Wed Jan 29, 2003 9:28 am Post subject: Re: So right Ridgerunner
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jfwag
Joined: 11 Jan 2003
Posts: 140
Posted: Wed Jan 29, 2003 9:31 am Post subject: Re: Educating Patients, Caregivers and the Public
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Above is only one type of thing that can be done as far as a letterhead. If everyone wants me too, I can put up more types of things and we can vote? I don't know Everybody can experiment with it, just go to flamingtext.com
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jfwag
Joined: 11 Jan 2003
Posts: 140
Posted: Wed Jan 29, 2003 9:33 am Post subject: Re: Educating Patients, Caregivers and the Public
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jfwag
Joined: 11 Jan 2003
Posts: 140
Posted: Wed Jan 29, 2003 9:36 am Post subject: Re: Educating Patients, Caregivers and the Public
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jfwag
Joined: 11 Jan 2003
Posts: 140
Posted: Wed Jan 29, 2003 9:38 am Post subject: Re: Educating Patients, Caregivers and the Public
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jfwag
Joined: 11 Jan 2003
Posts: 140
Posted: Wed Jan 29, 2003 9:44 am Post subject: Re: Educating Patients, Caregivers and the Public
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" style="border:0;"/> REMEMBER THOUGH, I AM PRETTY SURE YOU NEED TO BE MEMBERS IN ORDER TO POST LIKE THIS, SO "LOGIN" EVERYONE AND FOLLOW THE PROMPTS WHEN YOU GET TO FLAMINGTEXT. yOU WILL HAVE TO COPY AND PASTE FROM THE EZ-BOARD LINK.
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jfwag
Joined: 11 Jan 2003
Posts: 140
Posted: Thu Jan 30, 2003 3:12 am Post subject: Re: Educating Patients, Caregivers and the Public
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my vote
Joined: 30 Jan 2003
Posts: 1
Posted: Thu Jan 30, 2003 8:32 am Post subject: vote
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I like the one with the reflection.
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Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Fri Jan 31, 2003 3:01 am Post subject: Hands down!
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The one with the reflection wins my vote! Way to go! Lin.
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lec
Joined: 11 Feb 2003
Posts: 1
Posted: Tue Feb 11, 2003 4:13 am Post subject: I ....
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vote for the blue one too.
