CF Clinic or not?

bet10

New member
I have just found out that our CF CLinic, which I was of the understanding were accredited by the CFF are not, despite them telling me they were part of the organisation on our first visit. Apparently they lost there status due to adult patients. We are only 3 months into this with our new bub and are trying to learn as much as we can to give our boy the best care we can, so I just want to make sure he is going to the best clinic and gaining the best and most advanced care available, inline with with CF guidelines. Do CF clinics have to be CFF certified? There is another clinic about an hour away, I just don't know what to do. When I challenged them they tried to assure me they follow all the guidelines etc.. maybe they are just nervous about losing a patient - who knows!! The doctors at the clinic are okay, when you get to actually see them, but I have nothing to compare to anyway,but now I have doubt in their abilities.... Uggh!
 

bet10

New member
I have just found out that our CF CLinic, which I was of the understanding were accredited by the CFF are not, despite them telling me they were part of the organisation on our first visit. Apparently they lost there status due to adult patients. We are only 3 months into this with our new bub and are trying to learn as much as we can to give our boy the best care we can, so I just want to make sure he is going to the best clinic and gaining the best and most advanced care available, inline with with CF guidelines. Do CF clinics have to be CFF certified? There is another clinic about an hour away, I just don't know what to do. When I challenged them they tried to assure me they follow all the guidelines etc.. maybe they are just nervous about losing a patient - who knows!! The doctors at the clinic are okay, when you get to actually see them, but I have nothing to compare to anyway,but now I have doubt in their abilities.... Uggh!
 

bet10

New member
I have just found out that our CF CLinic, which I was of the understanding were accredited by the CFF are not, despite them telling me they were part of the organisation on our first visit. Apparently they lost there status due to adult patients. We are only 3 months into this with our new bub and are trying to learn as much as we can to give our boy the best care we can, so I just want to make sure he is going to the best clinic and gaining the best and most advanced care available, inline with with CF guidelines. Do CF clinics have to be CFF certified? There is another clinic about an hour away, I just don't know what to do. When I challenged them they tried to assure me they follow all the guidelines etc.. maybe they are just nervous about losing a patient - who knows!! The doctors at the clinic are okay, when you get to actually see them, but I have nothing to compare to anyway,but now I have doubt in their abilities.... Uggh!
 

bet10

New member
I have just found out that our CF CLinic, which I was of the understanding were accredited by the CFF are not, despite them telling me they were part of the organisation on our first visit. Apparently they lost there status due to adult patients. We are only 3 months into this with our new bub and are trying to learn as much as we can to give our boy the best care we can, so I just want to make sure he is going to the best clinic and gaining the best and most advanced care available, inline with with CF guidelines. Do CF clinics have to be CFF certified? There is another clinic about an hour away, I just don't know what to do. When I challenged them they tried to assure me they follow all the guidelines etc.. maybe they are just nervous about losing a patient - who knows!! The doctors at the clinic are okay, when you get to actually see them, but I have nothing to compare to anyway,but now I have doubt in their abilities.... Uggh!
 

bet10

New member
I have just found out that our CF CLinic, which I was of the understanding were accredited by the CFF are not, despite them telling me they were part of the organisation on our first visit. Apparently they lost there status due to adult patients. We are only 3 months into this with our new bub and are trying to learn as much as we can to give our boy the best care we can, so I just want to make sure he is going to the best clinic and gaining the best and most advanced care available, inline with with CF guidelines. Do CF clinics have to be CFF certified? There is another clinic about an hour away, I just don't know what to do. When I challenged them they tried to assure me they follow all the guidelines etc.. maybe they are just nervous about losing a patient - who knows!! The doctors at the clinic are okay, when you get to actually see them, but I have nothing to compare to anyway,but now I have doubt in their abilities.... Uggh!
 

Ratatosk

Administrator
Staff member
Are they proactive? Meaning are they agressive in treating cf before there are symptoms? When you have concerns do they get back to you right away?

We began attending by attending a local non-accreditted CF clinic, but kept our primary care in the City about 250 miles away. We became more and more concerned with the way the local clinic did things -- crowded waiting room, moer reactive that proactive, never ever returned phone calls... Eventually the local clinic DID become accreditted, but I don't believe things have changed.

IMO, might be good to ask around abou the other clinic that is an hour away...
 

Ratatosk

Administrator
Staff member
Are they proactive? Meaning are they agressive in treating cf before there are symptoms? When you have concerns do they get back to you right away?

We began attending by attending a local non-accreditted CF clinic, but kept our primary care in the City about 250 miles away. We became more and more concerned with the way the local clinic did things -- crowded waiting room, moer reactive that proactive, never ever returned phone calls... Eventually the local clinic DID become accreditted, but I don't believe things have changed.

IMO, might be good to ask around abou the other clinic that is an hour away...
 

Ratatosk

Administrator
Staff member
Are they proactive? Meaning are they agressive in treating cf before there are symptoms? When you have concerns do they get back to you right away?

We began attending by attending a local non-accreditted CF clinic, but kept our primary care in the City about 250 miles away. We became more and more concerned with the way the local clinic did things -- crowded waiting room, moer reactive that proactive, never ever returned phone calls... Eventually the local clinic DID become accreditted, but I don't believe things have changed.

IMO, might be good to ask around abou the other clinic that is an hour away...
 

Ratatosk

Administrator
Staff member
Are they proactive? Meaning are they agressive in treating cf before there are symptoms? When you have concerns do they get back to you right away?

We began attending by attending a local non-accreditted CF clinic, but kept our primary care in the City about 250 miles away. We became more and more concerned with the way the local clinic did things -- crowded waiting room, moer reactive that proactive, never ever returned phone calls... Eventually the local clinic DID become accreditted, but I don't believe things have changed.

IMO, might be good to ask around abou the other clinic that is an hour away...
 

Ratatosk

Administrator
Staff member
Are they proactive? Meaning are they agressive in treating cf before there are symptoms? When you have concerns do they get back to you right away?
<br />
<br />We began attending by attending a local non-accreditted CF clinic, but kept our primary care in the City about 250 miles away. We became more and more concerned with the way the local clinic did things -- crowded waiting room, moer reactive that proactive, never ever returned phone calls... Eventually the local clinic DID become accreditted, but I don't believe things have changed.
<br />
<br />IMO, might be good to ask around abou the other clinic that is an hour away...
 
M

Mommafirst

Guest
I'm sure that when they assure you they follow the CFF guidelines, they believe they do. But if they are following the guidelines, then why did they lose accreditation?

If I were you, I'd drive the hour to the other clinic and meet the other team. You'll have a level of comparison and a better chance to make your decision. I don't think that lack of accreditation means that they are a horrible clinic or that they can't be the right place for you and yours. But I do think that if you choose them you should do so because you've done all your homework and you like your choice, not because you feel stuck with them.
 
M

Mommafirst

Guest
I'm sure that when they assure you they follow the CFF guidelines, they believe they do. But if they are following the guidelines, then why did they lose accreditation?

If I were you, I'd drive the hour to the other clinic and meet the other team. You'll have a level of comparison and a better chance to make your decision. I don't think that lack of accreditation means that they are a horrible clinic or that they can't be the right place for you and yours. But I do think that if you choose them you should do so because you've done all your homework and you like your choice, not because you feel stuck with them.
 
M

Mommafirst

Guest
I'm sure that when they assure you they follow the CFF guidelines, they believe they do. But if they are following the guidelines, then why did they lose accreditation?

If I were you, I'd drive the hour to the other clinic and meet the other team. You'll have a level of comparison and a better chance to make your decision. I don't think that lack of accreditation means that they are a horrible clinic or that they can't be the right place for you and yours. But I do think that if you choose them you should do so because you've done all your homework and you like your choice, not because you feel stuck with them.
 
M

Mommafirst

Guest
I'm sure that when they assure you they follow the CFF guidelines, they believe they do. But if they are following the guidelines, then why did they lose accreditation?

If I were you, I'd drive the hour to the other clinic and meet the other team. You'll have a level of comparison and a better chance to make your decision. I don't think that lack of accreditation means that they are a horrible clinic or that they can't be the right place for you and yours. But I do think that if you choose them you should do so because you've done all your homework and you like your choice, not because you feel stuck with them.
 
M

Mommafirst

Guest
I'm sure that when they assure you they follow the CFF guidelines, they believe they do. But if they are following the guidelines, then why did they lose accreditation?
<br />
<br />If I were you, I'd drive the hour to the other clinic and meet the other team. You'll have a level of comparison and a better chance to make your decision. I don't think that lack of accreditation means that they are a horrible clinic or that they can't be the right place for you and yours. But I do think that if you choose them you should do so because you've done all your homework and you like your choice, not because you feel stuck with them.
 

bet10

New member
From what I can gather they are proactive to a point, as they have given him nueb treatment already and we do CPT once a day. But I did quiz them to whether we should be doing it more often as a preventative measure and they seemed non-commital about the benefits of doing so - basically said it was up to me. They are not great at returning calls, take 2 - 3 days, even though I may have left several messages with a few different people - so that has been really frustrating! We always have to wait in the crowded waiting room, and every time they say they try to get us in as quick as possible but to no avail. You have really convinced me to try the other clinic, even just as a fact finding mission. thanks
 

bet10

New member
From what I can gather they are proactive to a point, as they have given him nueb treatment already and we do CPT once a day. But I did quiz them to whether we should be doing it more often as a preventative measure and they seemed non-commital about the benefits of doing so - basically said it was up to me. They are not great at returning calls, take 2 - 3 days, even though I may have left several messages with a few different people - so that has been really frustrating! We always have to wait in the crowded waiting room, and every time they say they try to get us in as quick as possible but to no avail. You have really convinced me to try the other clinic, even just as a fact finding mission. thanks
 

bet10

New member
From what I can gather they are proactive to a point, as they have given him nueb treatment already and we do CPT once a day. But I did quiz them to whether we should be doing it more often as a preventative measure and they seemed non-commital about the benefits of doing so - basically said it was up to me. They are not great at returning calls, take 2 - 3 days, even though I may have left several messages with a few different people - so that has been really frustrating! We always have to wait in the crowded waiting room, and every time they say they try to get us in as quick as possible but to no avail. You have really convinced me to try the other clinic, even just as a fact finding mission. thanks
 

bet10

New member
From what I can gather they are proactive to a point, as they have given him nueb treatment already and we do CPT once a day. But I did quiz them to whether we should be doing it more often as a preventative measure and they seemed non-commital about the benefits of doing so - basically said it was up to me. They are not great at returning calls, take 2 - 3 days, even though I may have left several messages with a few different people - so that has been really frustrating! We always have to wait in the crowded waiting room, and every time they say they try to get us in as quick as possible but to no avail. You have really convinced me to try the other clinic, even just as a fact finding mission. thanks
 

bet10

New member
From what I can gather they are proactive to a point, as they have given him nueb treatment already and we do CPT once a day. But I did quiz them to whether we should be doing it more often as a preventative measure and they seemed non-commital about the benefits of doing so - basically said it was up to me. They are not great at returning calls, take 2 - 3 days, even though I may have left several messages with a few different people - so that has been really frustrating! We always have to wait in the crowded waiting room, and every time they say they try to get us in as quick as possible but to no avail. You have really convinced me to try the other clinic, even just as a fact finding mission. thanks
 
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