Article on local CF clinic

[Ratatosk]

I've posted before about our local, nonaccreditted clinic and concerns we've had, here's an article about a newly diagnosed child from the clinic newsletter. What bothers me about this article is the comment that IF the lungs become affected, "they'll know what to look for and what to do about it".

A concern we've had besides the cross contamination issues and them being more reactive that proactive is that this clinic doesn't advocate any CPT until the patients have problems. Liza

<a target=_blank class=ftalternatingbarlinklarge href="http://www.meritcare.com/news/...ne_earlydetection.aspx">http://www.meritcare.com/news/...ne_earlydetection.aspx</a>

 

[S]

<b>nonaccreditted</b> is what stands out to me.

 

[thelizardqueen]

That's what worries me as well is the fact that the clinic is nonaccreditted. That means that its not affiliated with the CF foundation.

 

[anonymous]

Me too! Go to a CF Clinic that is accredited . You will get the best care and that is key to having CF. You can probably go on the CF website and get a list of clinics

Jennifer 34 years old with CF and CFRD

 

[anonymous]

Yeah but accredited doesn't always mean best.

When my son was born he was in the NICU at a children's hospital with an accredited CF team. That CF team almost killed him. He would not be alive today had we not had him transferred. His life was saved by a ped pulmo, not affiliated with a CF center.

I'm glad that unlike some of the people here, I had the brains to realize that accredited doesn't always mean better.

Some you need to stop going along believing that jsut because the CFF says or the CFF accredits this, that its better

The stupidity here is astounding

 

[jenhum]

<div class="FTQUOTE"><begin quote>Yeah but accredited doesn't always mean best.

When my son was born he was in the NICU at a children's hospital with an accredited CF team. That CF team almost killed him. He would not be alive today had we not had him transferred. His life was saved by a ped pulmo, not affiliated with a CF center.

I'm glad that unlike some of the people here, I had the brains to realize that accredited doesn't always mean better.

Some you need to stop going along believing that jsut because the CFF says or the CFF accredits this, that its better

The stupidity here is astounding </end quote></div>

I believe that finding a non-accredited facility with more knowledge and ability than an accredited center would be the exception, not the rule.

And if you think people are going to listen to you after that last sentence, then your stupidity astounds me.

 

[S]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
The stupidity here is astounding</end quote></div>


wow, thanks for having the balls to say that while hiding behind the "anonymous" tag! are you raising your son to be a coward like you?

The clinic i go to is accredited, but my doc also has a private practice across the street that i go to at times. he is nationally recognized as one of the top critical care and pulmonary docs in the country. so stupid of me to see him, i know <img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[thelizardqueen]

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


I'm glad that unlike some of the people here, I had the brains to realize that accredited doesn't always mean better.



Some you need to stop going along believing that jsut because the CFF says or the CFF accredits this, that its better



The stupidity here is astounding</end quote></div>


I've been to doctors who have no knowledge of CF, and its done more harm to me then anything. MY experience with accredited clinics has been great. I'm not saying that everyone should go to an accredited clinic, but I find in my experience its the better deal. Not going to an accredited clinic is usually the exception and not the rule.

I don't go to accredited facilities because I go along and believe everything I read on the CF foundation website, but rather because its worked best for me. Thank you for telling me that I'm full of stupidity because I go to an accredited facility. If you notice, I didn't once say that the original poster was stupid, but rather I was worried for her.

Thanks for the harshness anon.

 

[anonymous]

We go to the local CF clinic to develop a rapport with the local doctors. But more and more we are concerned with the care (lack of that he receives). We also go to an accredited facility in Minneapolis 3 1/2 hours away. But I get so nervous about going to the local clinic that we just don't think we'll be going anymore. Especially after hearing about the 3-4 newly diagnosed patients and the lack of care they receive. Don't want to get labeled as being difficult, but want to keep DS as healthy as possible.

Also, lately at the local clinic, they're trying to tell us that they are soon going to become an affiliate of U of MN, which I HIGHLY doubt considering they way they operate the local clinic. The most recent article just gives me the chills. liza aka ratatosk.

 

[Emily65Roses]

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

Yeah but accredited doesn't always mean best.

When my son was born he was in the NICU at a children's hospital with an accredited CF team. That CF team almost killed him. He would not be alive today had we not had him transferred. His life was saved by a ped pulmo, not affiliated with a CF center.

I'm glad that unlike some of the people here, I had the brains to realize that accredited doesn't always mean better.

Some you need to stop going along believing that jsut because the CFF says or the CFF accredits this, that its better

The stupidity here is astounding</end quote></div>

<i>Doesn't always</i> mean best, correct. It often does, though. A non CF center is often not going to have sh*t for CF information. You have to go to a center and decide for yourself how good or bad a center is. For me, my local CF clinic is wonderful. Anyone who *assumes* CF accredited <b>automatically</b> means THE BEST may need a bit of a reality check, yes. But to assume that they have a leg up is not stupid. And no, not every place everywhere is going to be good, just like not every doctor everywhere is going to be good. Some of the best places have some of the stupidest doctors. It happens. You have to go to a center you feel comfortable at, but CF centers are usually at least a good place to start. Because if you can find one of those you like, you're fairly well off. If you hate it, then go elsewhere.

Basically, in short, you have to find a place you're comfortable with, even if it means a non-CF center. But if you can find a CF center you like, go that direction. Try CF centers first. If they don't seem up to par, then move on.

 

[Ratatosk]

It's basically and issue of being proactive with your care and stay on top of things. You know if something is wrong healthwise. We want to do everything within our power to keep our son healthy.

When talking with the mom of a newly diagnosed child at the Great Strides walk, my MIL, CFF rep and a CFer from Minneapolis encouraged her to be proactive, to seek a second opinion. This was a parent who'd read an article on us and learned we've been doing CPT on our child since he was a week old and demanded that the respiratory therapy department teach her how do do this. They did, but told her she really didn't need to do it, but try it once a day. It's interesting that 2 of the moms of the newly diagnosed children are nurses and another is in the medical field as a tech of some sort, yet none of them seem to question the care (lack of) they're receiving. I suppose it's a lot of information to receive and if you don't know about quality of care elsewhere, if this is all you know, then they probably assume they're okay.

And I've questioned some of the things the CF staff at the accredited facility have done also -- got into a knock down drag out with a dietician over formula and feedings when ds was only a few weeks old.

 

[CFHockeyMom]

I'm guessing that anon (@ 3:50) also went to a nonaccredited college!

There is a reason some clinics are accredited while others are not. I don't think anyone is saying that you can't get good care outside of an accredited center but you should try and understand why that center isn't accredited then make an informed choice.