CF Clinic Vs Single Doctor

Ratatosk

Administrator
Staff member
We go to a pediatric specialist in the City about 250 miles away, who primarily deals with CFers and has priviledges at a Hospital with an accreditted CF program. We go there 2-4 times a year. If I have any medical concerns, either the nurse gets back to me or they page the doctor after hours and he'll return my call. Locally we're told to go to urgent care or the ER.

Locally we have a nonaccreditted CF clinic with a regular pediatrician, pediatric pulmonologist, peds gastro, dietician, social work and an rt. We've stopped going to the local CF clinic because of the overcrowded waiting room and concerns with cross contamination. One doctor never washes his hands and last time neither did the nurse who was taking vitals. Unless you ask for a private room they rotate CFers from room to room to room to see each doctor, which means about 10-15 cfers are spreading whatever bugs they're carrying. We're usually there for 4-5 hours -- cooling our heels. Last time our appointment was at 7:45 -- we didn't see anyone until 9:15 and were there until 1:30. We get a written report sent to us after each appointment -- it usually consists of the doctors criticism and concern with the meds DS is on, that we go to a different clinic.

We're in the process of trying to find a local doctor, in addition to going to the City a few times a year. Several people in our area go to one of the accreditted clinics 3-4 hours away and just see local doctors.

BTW, 4/14 seems like TOO long to wait IMO. Over 6 months? It's important to be proactive with your child's care.
 

Ratatosk

Administrator
Staff member
We go to a pediatric specialist in the City about 250 miles away, who primarily deals with CFers and has priviledges at a Hospital with an accreditted CF program. We go there 2-4 times a year. If I have any medical concerns, either the nurse gets back to me or they page the doctor after hours and he'll return my call. Locally we're told to go to urgent care or the ER.

Locally we have a nonaccreditted CF clinic with a regular pediatrician, pediatric pulmonologist, peds gastro, dietician, social work and an rt. We've stopped going to the local CF clinic because of the overcrowded waiting room and concerns with cross contamination. One doctor never washes his hands and last time neither did the nurse who was taking vitals. Unless you ask for a private room they rotate CFers from room to room to room to see each doctor, which means about 10-15 cfers are spreading whatever bugs they're carrying. We're usually there for 4-5 hours -- cooling our heels. Last time our appointment was at 7:45 -- we didn't see anyone until 9:15 and were there until 1:30. We get a written report sent to us after each appointment -- it usually consists of the doctors criticism and concern with the meds DS is on, that we go to a different clinic.

We're in the process of trying to find a local doctor, in addition to going to the City a few times a year. Several people in our area go to one of the accreditted clinics 3-4 hours away and just see local doctors.

BTW, 4/14 seems like TOO long to wait IMO. Over 6 months? It's important to be proactive with your child's care.
 

Ratatosk

Administrator
Staff member
We go to a pediatric specialist in the City about 250 miles away, who primarily deals with CFers and has priviledges at a Hospital with an accreditted CF program. We go there 2-4 times a year. If I have any medical concerns, either the nurse gets back to me or they page the doctor after hours and he'll return my call. Locally we're told to go to urgent care or the ER.

Locally we have a nonaccreditted CF clinic with a regular pediatrician, pediatric pulmonologist, peds gastro, dietician, social work and an rt. We've stopped going to the local CF clinic because of the overcrowded waiting room and concerns with cross contamination. One doctor never washes his hands and last time neither did the nurse who was taking vitals. Unless you ask for a private room they rotate CFers from room to room to room to see each doctor, which means about 10-15 cfers are spreading whatever bugs they're carrying. We're usually there for 4-5 hours -- cooling our heels. Last time our appointment was at 7:45 -- we didn't see anyone until 9:15 and were there until 1:30. We get a written report sent to us after each appointment -- it usually consists of the doctors criticism and concern with the meds DS is on, that we go to a different clinic.

We're in the process of trying to find a local doctor, in addition to going to the City a few times a year. Several people in our area go to one of the accreditted clinics 3-4 hours away and just see local doctors.

BTW, 4/14 seems like TOO long to wait IMO. Over 6 months? It's important to be proactive with your child's care.
 

wuffles

New member
I have always been to individual doctors rather than CF clinics. My first few doctors were at public hospitals with a specialised CF doctor and CF unit, so it was similar to a clinic-style appointment. From my teen years, I was seen at a private surgery by a CF specialist.

The city I live in now (even though it's the capital of Australia!) has no CF clinics or specialist CF doctors. There are two thoracic physicians that see CF patients (pretty much like pulmonologists) but they know enough about digestion etc. to be effective.

So I guess I'll put in a vote for individual doctors because I don't know anything else and do fine under their care! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

wuffles

New member
I have always been to individual doctors rather than CF clinics. My first few doctors were at public hospitals with a specialised CF doctor and CF unit, so it was similar to a clinic-style appointment. From my teen years, I was seen at a private surgery by a CF specialist.

The city I live in now (even though it's the capital of Australia!) has no CF clinics or specialist CF doctors. There are two thoracic physicians that see CF patients (pretty much like pulmonologists) but they know enough about digestion etc. to be effective.

So I guess I'll put in a vote for individual doctors because I don't know anything else and do fine under their care! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

wuffles

New member
I have always been to individual doctors rather than CF clinics. My first few doctors were at public hospitals with a specialised CF doctor and CF unit, so it was similar to a clinic-style appointment. From my teen years, I was seen at a private surgery by a CF specialist.

The city I live in now (even though it's the capital of Australia!) has no CF clinics or specialist CF doctors. There are two thoracic physicians that see CF patients (pretty much like pulmonologists) but they know enough about digestion etc. to be effective.

So I guess I'll put in a vote for individual doctors because I don't know anything else and do fine under their care! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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