CF Clinic Complaints...Anyone Else??

flatfordl

New member
Wow, I can't believe how some CF centers handle things. Our clinic is pretty good. We never wait in the waiting room for more than 5 minutes and even then a Child Care Specialist comes out to play with our daughter and keep her occupied.

We are usually in the room for around three hours though. Again the child care specialist comes in and brings (brand new)toys for avery to play with. I don't mind the long wait because I like to see all the practioners; the dietician, respiratory therapist and of course the doctor.

Why don't you go to the pulmonologist office for appointments instead? That is what we did for the first year of Avery's diagnosis before we signed on to the CF clinic.

I feel for you all and hope it gets better for you.
 

flatfordl

New member
Wow, I can't believe how some CF centers handle things. Our clinic is pretty good. We never wait in the waiting room for more than 5 minutes and even then a Child Care Specialist comes out to play with our daughter and keep her occupied.

We are usually in the room for around three hours though. Again the child care specialist comes in and brings (brand new)toys for avery to play with. I don't mind the long wait because I like to see all the practioners; the dietician, respiratory therapist and of course the doctor.

Why don't you go to the pulmonologist office for appointments instead? That is what we did for the first year of Avery's diagnosis before we signed on to the CF clinic.

I feel for you all and hope it gets better for you.
 

flatfordl

New member
Wow, I can't believe how some CF centers handle things. Our clinic is pretty good. We never wait in the waiting room for more than 5 minutes and even then a Child Care Specialist comes out to play with our daughter and keep her occupied.

We are usually in the room for around three hours though. Again the child care specialist comes in and brings (brand new)toys for avery to play with. I don't mind the long wait because I like to see all the practioners; the dietician, respiratory therapist and of course the doctor.

Why don't you go to the pulmonologist office for appointments instead? That is what we did for the first year of Avery's diagnosis before we signed on to the CF clinic.

I feel for you all and hope it gets better for you.
 

flatfordl

New member
Wow, I can't believe how some CF centers handle things. Our clinic is pretty good. We never wait in the waiting room for more than 5 minutes and even then a Child Care Specialist comes out to play with our daughter and keep her occupied.

We are usually in the room for around three hours though. Again the child care specialist comes in and brings (brand new)toys for avery to play with. I don't mind the long wait because I like to see all the practioners; the dietician, respiratory therapist and of course the doctor.

Why don't you go to the pulmonologist office for appointments instead? That is what we did for the first year of Avery's diagnosis before we signed on to the CF clinic.

I feel for you all and hope it gets better for you.
 

flatfordl

New member
Wow, I can't believe how some CF centers handle things. Our clinic is pretty good. We never wait in the waiting room for more than 5 minutes and even then a Child Care Specialist comes out to play with our daughter and keep her occupied.
<br />
<br />We are usually in the room for around three hours though. Again the child care specialist comes in and brings (brand new)toys for avery to play with. I don't mind the long wait because I like to see all the practioners; the dietician, respiratory therapist and of course the doctor.
<br />
<br />Why don't you go to the pulmonologist office for appointments instead? That is what we did for the first year of Avery's diagnosis before we signed on to the CF clinic.
<br />
<br />I feel for you all and hope it gets better for you.
 

TestifyToLove

New member
Ds has faced both situations. One of the big reasons I was hot to trot to get him OUT of fostercare is because I saw how his former CF center handled clinic and I was furious over it. And yes, they were supposedly an accredited center, though once we finalize his adoption I WILL be writing a letter of complaint to the CFF.

At his old center, he came in, shared a huge waiting room with tons of children. There had to be 30 children in the waiting room, and there was no way to know who had CF. They were all the speciality clinics running at the same time. Some absolutely were CFers, others had other issues. MOST had runny noses. There weren't even masks available, much less being utilized on any of the children. Ds' fostermom reported that he had NEVER used a mask at clinic.

Now, once they took him back, an hour later, they did put him in one room. Who knows who used it previously and whether it was wiped down or not. But, the child life specialist proceeded to bring in at least a dozen communal toys, and judging from the speed which she brought them in, they were NOT wiped down first.

Doctors, nurses, nutritionalist, etc all entered the room and didn't bother to wash their hands. Several coughed on him. And, they didn't even shut the door when they stepped back out.

GREAT. No wonder he contracted PA at that clinic. We were quite happy to get him out of there.

Our clinic is totally different. Its a small waiting room. They schedule like-cultured patients for the same day only. So, except in an emergency, Ds can only get clinic appointments for Tuesdays. If he has an emergency, he has to come in early before clinic opens. Waiting room only has about 10 seats in it. I've never seen more than 2 patients in the waiting room. And, there are masks at the front door before you ever enter that all patients must wear outside of their exam rooms. We had to wait 10 minutes for an exam room once because they were wiping it down again. Never waited longer than that.

They usher us into a room and then ds is allowed to remove his mask, but his door MUST stay closed. All patients must stay in their own rooms with the doors closed, or wear masks when they step out. They should only be out to use the bathroom. Child Life Specialists bring individually sealed toys and treats which are given to the children to keep. There's also individual coloring books and packs of crayons in the waiting room, with a sign if you take one you must KEEP it--do NOT return it.

I have no idea how they have time to see all of their patients all of the time at our center. They are so fastidious in their care, and very strict about adhereing to every CFF guideline. They are extremely proactive and aggressive on treatment. I know when we leave they wipe the room down before using it for another patient as well.

I only have one complaint about our CF clinic at the moment. The hospital grouped their phone into a call center for all the speciality clinics. Evidentally as of this month when I need to reach someone at the CF center, I have to call the call center and leave a message. I'm really not okay with that nonsense. But, when we go to clinic next Tuesday, I'm going to see if we at least have a nursing line to access without having to add another layer between ds and his doctors. I don't really care for all the basic stuff. But, if I need to reach his doctor, I already have to go through the nurse and I'm not at all happy at the prospect of having to go through a call center of non-medical personnel first. But, other than that we are totally happy with our CF clinic. Given how bad it *was* for Ds, the care he gets now is vastly improved.
 

TestifyToLove

New member
Ds has faced both situations. One of the big reasons I was hot to trot to get him OUT of fostercare is because I saw how his former CF center handled clinic and I was furious over it. And yes, they were supposedly an accredited center, though once we finalize his adoption I WILL be writing a letter of complaint to the CFF.

At his old center, he came in, shared a huge waiting room with tons of children. There had to be 30 children in the waiting room, and there was no way to know who had CF. They were all the speciality clinics running at the same time. Some absolutely were CFers, others had other issues. MOST had runny noses. There weren't even masks available, much less being utilized on any of the children. Ds' fostermom reported that he had NEVER used a mask at clinic.

Now, once they took him back, an hour later, they did put him in one room. Who knows who used it previously and whether it was wiped down or not. But, the child life specialist proceeded to bring in at least a dozen communal toys, and judging from the speed which she brought them in, they were NOT wiped down first.

Doctors, nurses, nutritionalist, etc all entered the room and didn't bother to wash their hands. Several coughed on him. And, they didn't even shut the door when they stepped back out.

GREAT. No wonder he contracted PA at that clinic. We were quite happy to get him out of there.

Our clinic is totally different. Its a small waiting room. They schedule like-cultured patients for the same day only. So, except in an emergency, Ds can only get clinic appointments for Tuesdays. If he has an emergency, he has to come in early before clinic opens. Waiting room only has about 10 seats in it. I've never seen more than 2 patients in the waiting room. And, there are masks at the front door before you ever enter that all patients must wear outside of their exam rooms. We had to wait 10 minutes for an exam room once because they were wiping it down again. Never waited longer than that.

They usher us into a room and then ds is allowed to remove his mask, but his door MUST stay closed. All patients must stay in their own rooms with the doors closed, or wear masks when they step out. They should only be out to use the bathroom. Child Life Specialists bring individually sealed toys and treats which are given to the children to keep. There's also individual coloring books and packs of crayons in the waiting room, with a sign if you take one you must KEEP it--do NOT return it.

I have no idea how they have time to see all of their patients all of the time at our center. They are so fastidious in their care, and very strict about adhereing to every CFF guideline. They are extremely proactive and aggressive on treatment. I know when we leave they wipe the room down before using it for another patient as well.

I only have one complaint about our CF clinic at the moment. The hospital grouped their phone into a call center for all the speciality clinics. Evidentally as of this month when I need to reach someone at the CF center, I have to call the call center and leave a message. I'm really not okay with that nonsense. But, when we go to clinic next Tuesday, I'm going to see if we at least have a nursing line to access without having to add another layer between ds and his doctors. I don't really care for all the basic stuff. But, if I need to reach his doctor, I already have to go through the nurse and I'm not at all happy at the prospect of having to go through a call center of non-medical personnel first. But, other than that we are totally happy with our CF clinic. Given how bad it *was* for Ds, the care he gets now is vastly improved.
 

TestifyToLove

New member
Ds has faced both situations. One of the big reasons I was hot to trot to get him OUT of fostercare is because I saw how his former CF center handled clinic and I was furious over it. And yes, they were supposedly an accredited center, though once we finalize his adoption I WILL be writing a letter of complaint to the CFF.

At his old center, he came in, shared a huge waiting room with tons of children. There had to be 30 children in the waiting room, and there was no way to know who had CF. They were all the speciality clinics running at the same time. Some absolutely were CFers, others had other issues. MOST had runny noses. There weren't even masks available, much less being utilized on any of the children. Ds' fostermom reported that he had NEVER used a mask at clinic.

Now, once they took him back, an hour later, they did put him in one room. Who knows who used it previously and whether it was wiped down or not. But, the child life specialist proceeded to bring in at least a dozen communal toys, and judging from the speed which she brought them in, they were NOT wiped down first.

Doctors, nurses, nutritionalist, etc all entered the room and didn't bother to wash their hands. Several coughed on him. And, they didn't even shut the door when they stepped back out.

GREAT. No wonder he contracted PA at that clinic. We were quite happy to get him out of there.

Our clinic is totally different. Its a small waiting room. They schedule like-cultured patients for the same day only. So, except in an emergency, Ds can only get clinic appointments for Tuesdays. If he has an emergency, he has to come in early before clinic opens. Waiting room only has about 10 seats in it. I've never seen more than 2 patients in the waiting room. And, there are masks at the front door before you ever enter that all patients must wear outside of their exam rooms. We had to wait 10 minutes for an exam room once because they were wiping it down again. Never waited longer than that.

They usher us into a room and then ds is allowed to remove his mask, but his door MUST stay closed. All patients must stay in their own rooms with the doors closed, or wear masks when they step out. They should only be out to use the bathroom. Child Life Specialists bring individually sealed toys and treats which are given to the children to keep. There's also individual coloring books and packs of crayons in the waiting room, with a sign if you take one you must KEEP it--do NOT return it.

I have no idea how they have time to see all of their patients all of the time at our center. They are so fastidious in their care, and very strict about adhereing to every CFF guideline. They are extremely proactive and aggressive on treatment. I know when we leave they wipe the room down before using it for another patient as well.

I only have one complaint about our CF clinic at the moment. The hospital grouped their phone into a call center for all the speciality clinics. Evidentally as of this month when I need to reach someone at the CF center, I have to call the call center and leave a message. I'm really not okay with that nonsense. But, when we go to clinic next Tuesday, I'm going to see if we at least have a nursing line to access without having to add another layer between ds and his doctors. I don't really care for all the basic stuff. But, if I need to reach his doctor, I already have to go through the nurse and I'm not at all happy at the prospect of having to go through a call center of non-medical personnel first. But, other than that we are totally happy with our CF clinic. Given how bad it *was* for Ds, the care he gets now is vastly improved.
 

TestifyToLove

New member
Ds has faced both situations. One of the big reasons I was hot to trot to get him OUT of fostercare is because I saw how his former CF center handled clinic and I was furious over it. And yes, they were supposedly an accredited center, though once we finalize his adoption I WILL be writing a letter of complaint to the CFF.

At his old center, he came in, shared a huge waiting room with tons of children. There had to be 30 children in the waiting room, and there was no way to know who had CF. They were all the speciality clinics running at the same time. Some absolutely were CFers, others had other issues. MOST had runny noses. There weren't even masks available, much less being utilized on any of the children. Ds' fostermom reported that he had NEVER used a mask at clinic.

Now, once they took him back, an hour later, they did put him in one room. Who knows who used it previously and whether it was wiped down or not. But, the child life specialist proceeded to bring in at least a dozen communal toys, and judging from the speed which she brought them in, they were NOT wiped down first.

Doctors, nurses, nutritionalist, etc all entered the room and didn't bother to wash their hands. Several coughed on him. And, they didn't even shut the door when they stepped back out.

GREAT. No wonder he contracted PA at that clinic. We were quite happy to get him out of there.

Our clinic is totally different. Its a small waiting room. They schedule like-cultured patients for the same day only. So, except in an emergency, Ds can only get clinic appointments for Tuesdays. If he has an emergency, he has to come in early before clinic opens. Waiting room only has about 10 seats in it. I've never seen more than 2 patients in the waiting room. And, there are masks at the front door before you ever enter that all patients must wear outside of their exam rooms. We had to wait 10 minutes for an exam room once because they were wiping it down again. Never waited longer than that.

They usher us into a room and then ds is allowed to remove his mask, but his door MUST stay closed. All patients must stay in their own rooms with the doors closed, or wear masks when they step out. They should only be out to use the bathroom. Child Life Specialists bring individually sealed toys and treats which are given to the children to keep. There's also individual coloring books and packs of crayons in the waiting room, with a sign if you take one you must KEEP it--do NOT return it.

I have no idea how they have time to see all of their patients all of the time at our center. They are so fastidious in their care, and very strict about adhereing to every CFF guideline. They are extremely proactive and aggressive on treatment. I know when we leave they wipe the room down before using it for another patient as well.

I only have one complaint about our CF clinic at the moment. The hospital grouped their phone into a call center for all the speciality clinics. Evidentally as of this month when I need to reach someone at the CF center, I have to call the call center and leave a message. I'm really not okay with that nonsense. But, when we go to clinic next Tuesday, I'm going to see if we at least have a nursing line to access without having to add another layer between ds and his doctors. I don't really care for all the basic stuff. But, if I need to reach his doctor, I already have to go through the nurse and I'm not at all happy at the prospect of having to go through a call center of non-medical personnel first. But, other than that we are totally happy with our CF clinic. Given how bad it *was* for Ds, the care he gets now is vastly improved.
 

TestifyToLove

New member
Ds has faced both situations. One of the big reasons I was hot to trot to get him OUT of fostercare is because I saw how his former CF center handled clinic and I was furious over it. And yes, they were supposedly an accredited center, though once we finalize his adoption I WILL be writing a letter of complaint to the CFF.
<br />
<br />At his old center, he came in, shared a huge waiting room with tons of children. There had to be 30 children in the waiting room, and there was no way to know who had CF. They were all the speciality clinics running at the same time. Some absolutely were CFers, others had other issues. MOST had runny noses. There weren't even masks available, much less being utilized on any of the children. Ds' fostermom reported that he had NEVER used a mask at clinic.
<br />
<br />Now, once they took him back, an hour later, they did put him in one room. Who knows who used it previously and whether it was wiped down or not. But, the child life specialist proceeded to bring in at least a dozen communal toys, and judging from the speed which she brought them in, they were NOT wiped down first.
<br />
<br />Doctors, nurses, nutritionalist, etc all entered the room and didn't bother to wash their hands. Several coughed on him. And, they didn't even shut the door when they stepped back out.
<br />
<br />GREAT. No wonder he contracted PA at that clinic. We were quite happy to get him out of there.
<br />
<br />Our clinic is totally different. Its a small waiting room. They schedule like-cultured patients for the same day only. So, except in an emergency, Ds can only get clinic appointments for Tuesdays. If he has an emergency, he has to come in early before clinic opens. Waiting room only has about 10 seats in it. I've never seen more than 2 patients in the waiting room. And, there are masks at the front door before you ever enter that all patients must wear outside of their exam rooms. We had to wait 10 minutes for an exam room once because they were wiping it down again. Never waited longer than that.
<br />
<br />They usher us into a room and then ds is allowed to remove his mask, but his door MUST stay closed. All patients must stay in their own rooms with the doors closed, or wear masks when they step out. They should only be out to use the bathroom. Child Life Specialists bring individually sealed toys and treats which are given to the children to keep. There's also individual coloring books and packs of crayons in the waiting room, with a sign if you take one you must KEEP it--do NOT return it.
<br />
<br />I have no idea how they have time to see all of their patients all of the time at our center. They are so fastidious in their care, and very strict about adhereing to every CFF guideline. They are extremely proactive and aggressive on treatment. I know when we leave they wipe the room down before using it for another patient as well.
<br />
<br />I only have one complaint about our CF clinic at the moment. The hospital grouped their phone into a call center for all the speciality clinics. Evidentally as of this month when I need to reach someone at the CF center, I have to call the call center and leave a message. I'm really not okay with that nonsense. But, when we go to clinic next Tuesday, I'm going to see if we at least have a nursing line to access without having to add another layer between ds and his doctors. I don't really care for all the basic stuff. But, if I need to reach his doctor, I already have to go through the nurse and I'm not at all happy at the prospect of having to go through a call center of non-medical personnel first. But, other than that we are totally happy with our CF clinic. Given how bad it *was* for Ds, the care he gets now is vastly improved.
 

DEES4

New member
Does anyone know how I would write of complaint about what happened yesterday at clinic? Who do I write it to?
Yes, this is an accredited cf center. I am going to check and see where the nearest one other than this one is to us. I know for a fact that we encountered at least 5 other kids with cf (cause I asked their moms if they had it) and the rest i dont know about. One of the cf kids we ran into was not feeling good and her mom said she would probably be admitted. She has MSRA and Psuedomonas....she was wearing a mask and so was my son and they stayed away from each other....but I just couldn't believe it. There was also another little boy who looked to be about 2 (grandma said he had cf) that was just walking all around with no mask on.
On top of everything else my son didn't even get to see his regular doctor....had I known that we would have definitley left. And they forgot to check his oxygen saturation and he does not blow yet (they say hes not old enought yet)...he will be 5 next month. Any advice on who to complain to would be helpful. Thanks
Carrie
 

DEES4

New member
Does anyone know how I would write of complaint about what happened yesterday at clinic? Who do I write it to?
Yes, this is an accredited cf center. I am going to check and see where the nearest one other than this one is to us. I know for a fact that we encountered at least 5 other kids with cf (cause I asked their moms if they had it) and the rest i dont know about. One of the cf kids we ran into was not feeling good and her mom said she would probably be admitted. She has MSRA and Psuedomonas....she was wearing a mask and so was my son and they stayed away from each other....but I just couldn't believe it. There was also another little boy who looked to be about 2 (grandma said he had cf) that was just walking all around with no mask on.
On top of everything else my son didn't even get to see his regular doctor....had I known that we would have definitley left. And they forgot to check his oxygen saturation and he does not blow yet (they say hes not old enought yet)...he will be 5 next month. Any advice on who to complain to would be helpful. Thanks
Carrie
 

DEES4

New member
Does anyone know how I would write of complaint about what happened yesterday at clinic? Who do I write it to?
Yes, this is an accredited cf center. I am going to check and see where the nearest one other than this one is to us. I know for a fact that we encountered at least 5 other kids with cf (cause I asked their moms if they had it) and the rest i dont know about. One of the cf kids we ran into was not feeling good and her mom said she would probably be admitted. She has MSRA and Psuedomonas....she was wearing a mask and so was my son and they stayed away from each other....but I just couldn't believe it. There was also another little boy who looked to be about 2 (grandma said he had cf) that was just walking all around with no mask on.
On top of everything else my son didn't even get to see his regular doctor....had I known that we would have definitley left. And they forgot to check his oxygen saturation and he does not blow yet (they say hes not old enought yet)...he will be 5 next month. Any advice on who to complain to would be helpful. Thanks
Carrie
 

DEES4

New member
Does anyone know how I would write of complaint about what happened yesterday at clinic? Who do I write it to?
Yes, this is an accredited cf center. I am going to check and see where the nearest one other than this one is to us. I know for a fact that we encountered at least 5 other kids with cf (cause I asked their moms if they had it) and the rest i dont know about. One of the cf kids we ran into was not feeling good and her mom said she would probably be admitted. She has MSRA and Psuedomonas....she was wearing a mask and so was my son and they stayed away from each other....but I just couldn't believe it. There was also another little boy who looked to be about 2 (grandma said he had cf) that was just walking all around with no mask on.
On top of everything else my son didn't even get to see his regular doctor....had I known that we would have definitley left. And they forgot to check his oxygen saturation and he does not blow yet (they say hes not old enought yet)...he will be 5 next month. Any advice on who to complain to would be helpful. Thanks
Carrie
 

DEES4

New member
Does anyone know how I would write of complaint about what happened yesterday at clinic? Who do I write it to?
<br />Yes, this is an accredited cf center. I am going to check and see where the nearest one other than this one is to us. I know for a fact that we encountered at least 5 other kids with cf (cause I asked their moms if they had it) and the rest i dont know about. One of the cf kids we ran into was not feeling good and her mom said she would probably be admitted. She has MSRA and Psuedomonas....she was wearing a mask and so was my son and they stayed away from each other....but I just couldn't believe it. There was also another little boy who looked to be about 2 (grandma said he had cf) that was just walking all around with no mask on.
<br />On top of everything else my son didn't even get to see his regular doctor....had I known that we would have definitley left. And they forgot to check his oxygen saturation and he does not blow yet (they say hes not old enought yet)...he will be 5 next month. Any advice on who to complain to would be helpful. Thanks
<br />Carrie
 

Ratatosk

Administrator
Staff member
Are you involved with the local chapter of the CFF at all -- the great strides cf walk? If you know someone there, email them and ask. I once emailed our chapter rep to find out if they could point me in the direction of finding a local doctor -- a number of families in our area don't go to the local CF clinic but to one in the City (3 1/2 hour drive), yet still need a local pediatrician. They came up with some suggestions.

Otherwise, I'm sure the CFF page has contact info and you could mail a letter to the main address.
 

Ratatosk

Administrator
Staff member
Are you involved with the local chapter of the CFF at all -- the great strides cf walk? If you know someone there, email them and ask. I once emailed our chapter rep to find out if they could point me in the direction of finding a local doctor -- a number of families in our area don't go to the local CF clinic but to one in the City (3 1/2 hour drive), yet still need a local pediatrician. They came up with some suggestions.

Otherwise, I'm sure the CFF page has contact info and you could mail a letter to the main address.
 

Ratatosk

Administrator
Staff member
Are you involved with the local chapter of the CFF at all -- the great strides cf walk? If you know someone there, email them and ask. I once emailed our chapter rep to find out if they could point me in the direction of finding a local doctor -- a number of families in our area don't go to the local CF clinic but to one in the City (3 1/2 hour drive), yet still need a local pediatrician. They came up with some suggestions.

Otherwise, I'm sure the CFF page has contact info and you could mail a letter to the main address.
 

Ratatosk

Administrator
Staff member
Are you involved with the local chapter of the CFF at all -- the great strides cf walk? If you know someone there, email them and ask. I once emailed our chapter rep to find out if they could point me in the direction of finding a local doctor -- a number of families in our area don't go to the local CF clinic but to one in the City (3 1/2 hour drive), yet still need a local pediatrician. They came up with some suggestions.

Otherwise, I'm sure the CFF page has contact info and you could mail a letter to the main address.
 

Ratatosk

Administrator
Staff member
Are you involved with the local chapter of the CFF at all -- the great strides cf walk? If you know someone there, email them and ask. I once emailed our chapter rep to find out if they could point me in the direction of finding a local doctor -- a number of families in our area don't go to the local CF clinic but to one in the City (3 1/2 hour drive), yet still need a local pediatrician. They came up with some suggestions.
<br />
<br />Otherwise, I'm sure the CFF page has contact info and you could mail a letter to the main address.
 
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