Inappropriate to post?

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ladybug

New member
Hi!

OK, so I have a question before I start a post... Would it be a bad idea to start a thread on the board that states our unhappiness with particular CF centers??? I know the CFF is apprehensive about a "rating" system for patients to make their own educated decision about their care and where they receive it, so I thought why not have patients take it into their own hands and use something like this forum to alert others to "poor medical practices" by ACCREDITED centers? What do ya'll think about this?

This would clearly just be a thread to post your <i>disappointment</i> by a CF center you have visited and how they have mis-treated you. I have a couple of experiences I'd like to share. Some are from accredited, and others not. I would prefer to keep this to <b>ACCREDITED</b> centers, since those are the ones that SHOULD have a high standard of CF care, and I personally think if they're falling short, we have an obligation to alert others (something CFF won't do for us at this point). Just an idea. How do others feel about this?

Thanks-
 
M

MCPappy

New member
I think that is you have had disappointing experiences that you think others should know about then you should share them. I think that learning from other people problems and expierences will be able to help us all out in the long run. I have no problem with people sharing situations about accresdited centers, if something is "dissapointing" about where i am going i would for sure want to know about it and also maybe people have had similar situations and can give feedback on how they solved the problems.

We all need to watch out for eachother! =)
 
A

Abby

New member
I'd be happy to share our story of a cf center we absolutely hated. I cringe when I hear of other parents taking their children there but never know how much I should say to them.
 
I

IG

Guest
I think there are too many centers and too few people on here.
Nice idea though.

Usually when somebody comes on here and asks about a center or doctor they get the truth from other people who have been there which is about all I think we can do, or should do. That's just me though.
 
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NoExcuses

New member
i think it's a great idea.... let's started a seperate thread. very, very helpful since people are always asking about different centers <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
I would love to know if anybody else goes to the cf center I do and how they feel about the treatment they recieve there.

Does anyone here live in RI? We meet at Rhode Isand Hostpital we work with Brown University Chapter.

Nicole
 
C

catboogie

New member
sonia, instead of having a place where people can just complain, it would be cool if it could be set up in such a way that each person would answer, say, 20 or 30 standard questions about their clinic and rate them 1-10. just a suggestion. i think it's a great idea. just seems something like this would be a little more productive.

laura
 
E

EnergyGal

New member
I think it is a great idea. If someone had a problem it is good to tell others because we can all learn what to expect. It does not matter what center or hospital all scenarios apply to all. If something can go wrong at one center it can happen at any hopsital or center. GREAT idea.

Let us help one another
 
L

ladybug

New member
Laura,

I also think the list is a great idea. Maybe you could work on the questions for that? I think we've had posts like that that before that have been tremendously helpful at gaining insight into what people like/dislike about their clinics.

I would also like to have a place we CAN just vent and post about inappropriate treatment. I feel most people DO like their CF center, and this is what is talked about most. So, if we do that, many may only post about the good for fear of not wanting to "rock the boat". Whereas, if we have an ongoing thread that people can add to only if they have a terrible experience or have stopped going somewhere, people can glance at that and gain much more useful information (in my opinion). I wanted to put that all in a cenralized area where we don't have to search through many "I love my center" to find the one or two who have had a bad experience.

I know there are many many great care centers out there, but I don't know that I'd move from my good care center to another good care center, whereas, I would clearly AVOID moving to an area if one or many people have something bad to say about it. Just my opinion though.

I will start a thread. I don't have time to post right now, but will post on it later with my experiences.

Thanks-
 
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Emily65Roses

New member
I must say, though, there are some centers that are mostly good. I know you guys know me better than to think I'd stick to good stuff because I don't want to "rock the boat." LOL... I just LOVE my center, and almost anything I say about it will be good things. <img src="i/expressions/face-icon-small-smile.gif" border="0">

But all in all, it's an excellent idea.
 
L

ladybug

New member
I agree, Emily... most centers are awesome! The "naughty centers" post is more for aggregious acts that made you leave a clinic or totally turned you away from their way of doing things. Mostly a "warning" to those who have a choice in where they go. I personally would LOVE if someone had told me about the clinic I posted about, cause I would have tried tooth and nail to avoid coming here when we pcs'd.

I have also had an AMAZING clinic in San Antonio (although, I too will admit some things did irk me at times), and am not at all against a post that highlights some of a clinic's finer points! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

separate</end quote></div>

thank you! <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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IG

Guest
Sonia (Ladybug) which clinic in San Antonio did you go to?
Santa Rosa, Methodist, or any of the others?
Just curious.. I used to go to Santa Rosa.
 
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