What's new
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

CFF accredited centers and what they actually DO

ladybug

New member
OK, so I've not been on for awhile cause of vacations and getting a fever when on vacation and ending up in the ER and ...... long story.....

Anyway, my question has to do with a post Amy posted regarding what CFF accredited centers do in order to become or continuing being accredited in terms of CF care.

I noticed they are supposed to do bone scans and OGGTs for diabetes every year.... Hmmmm... I've been to 3 clinics now (all for more than one year) and none of these tests are even considered. These are all accredited centers. So, what gives??? How do they continue to be accredited if they are not following the guidelines for yearly exams? Does anyone's accredited clinic do dexa-scans and OGTTs every year? How about EKGs and tests on your heart? Or, liver tests? Or CT-scans? Bronchs? I guess what I'm getting at is, I've not been to a single clinic that FOLLOWS the rules of the CFF and yet they are still accredited. I actually used to go to a NON-accredited center that DID do such things every year! So, how is it that the 3 clinics that are supposed to be recognized by CFF are falling short, and the one that isn't actually DOES these tests on a regular basis? I'm also curious what, of the above-mentioned tests your center does on a regular basis? I know all the tests I mentioned are not required or recommended by CFF, but I am curious just how comprehensive our care really is.

I usually do PFTs and x-rays and blood work and sputum culture every clinic. Nothing more, nothing less (unless there is a problem). And, I consider my clinics VERY competent and VERY learned on CF care. The one I go to now sees upwards of 500 patients! So, I don't for one moment doubt their care, but I do worry that if you say CFF ONLY accredits clinics that follow these guidelines, this simply is not true. Mine never have and all but one has been accredited. Hmmmm....
 

LouLou

New member
why don't you call the CFF. I'd be interested in their response. sorry I can 't be more of a help.
btw, I'm in the process of being brought onto my clinic's patient advisory board to help up the quality of care they issue.
 

thelizardqueen

New member
I know I get PFTs done every clinic visit, as well as a sputum culture done as well. I get a bone scan done every year, and I've gotten my first CT scan done as well. As for blood work and x-rays, I get that done 2x a year I think, and I go to an accredited clinic. I would agree with Lauren and call the CFF.
 

ladybug

New member
I really don't mind that they dont' do these things, cause I feel they would if necessary and also feel I get excellent care with them. I just wonder why, and why I've been to 3 accredited centers and NONE of them follow these "guidelines"? Is this what they MUST do or just suggestions??? I find it funny that my tiny non-accredited clinic did all these things every year except the dexa. Hmmmm.... I'm not upset, just curious.
 

LouLou

New member
Exactly, I think it's curiously interesting to find out are they just suggestions and if so what does it take to become accredited? what does it take for a clinic to have it's accredation revoked if they are just suggestions is there some other method of evaluation that we don't know about.

I wasn't sayign call the CFF to bitch about your clinic. I was suggesting you pose the very same question to them that you did us.

I think it's a worthy question to have answered. I hope to hear it.
 

ladybug

New member
Does anyone have the link to the guidelines Amy posted? I went to the CFF site and couldn't find anything THEY said had to be done, but it is possible I'm looking in the wrong places.

Amy, where did you get your list of yearly tests in order to be accredited?

Thanks!
 

2005CFmom

Super Moderator
The 2004 Patient Registry has some of this information.   <a
href=
"http://www.cff.org/UploadedFiles/publications/files/2004%20Patient%20Registry%20Report.pdf/">
LINK</a><br>
 (Page 4 of the document....on page 6 of 16 in acrobat reader)
 but I don't believe it to be a complete list.<br>
<br>
EDIT...hmmm that link doesn't seem to work<br>
http://www.cff.org/publications/#Patient_Registry<br>
 
Top