Perfect CF Clinic

[mom2lillian]

Blondelawyer's blog got me seeing and thinking about the differences among clinics--its amazing! Anyway, as I mentioned in her blog my clinic has a survey from which they solicit improvement and a parent group that serves same purpose while acting as 'liasons' to families. I think any reputable clinic *should* be willing to consider input from their well established patients.

SO, what does your clinic do, what could they do better, or what would be 'ideal' in your eyes. Perhaps then we can compile ideas and take what we think would or could work in our location back to our clinics in one form or the other.

 

[mom2lillian]

Blondelawyer's blog got me seeing and thinking about the differences among clinics--its amazing! Anyway, as I mentioned in her blog my clinic has a survey from which they solicit improvement and a parent group that serves same purpose while acting as 'liasons' to families. I think any reputable clinic *should* be willing to consider input from their well established patients.

SO, what does your clinic do, what could they do better, or what would be 'ideal' in your eyes. Perhaps then we can compile ideas and take what we think would or could work in our location back to our clinics in one form or the other.

 

[mom2lillian]

Blondelawyer's blog got me seeing and thinking about the differences among clinics--its amazing! Anyway, as I mentioned in her blog my clinic has a survey from which they solicit improvement and a parent group that serves same purpose while acting as 'liasons' to families. I think any reputable clinic *should* be willing to consider input from their well established patients.

SO, what does your clinic do, what could they do better, or what would be 'ideal' in your eyes. Perhaps then we can compile ideas and take what we think would or could work in our location back to our clinics in one form or the other.

 

[mom2lillian]

Blondelawyer's blog got me seeing and thinking about the differences among clinics--its amazing! Anyway, as I mentioned in her blog my clinic has a survey from which they solicit improvement and a parent group that serves same purpose while acting as 'liasons' to families. I think any reputable clinic *should* be willing to consider input from their well established patients.

SO, what does your clinic do, what could they do better, or what would be 'ideal' in your eyes. Perhaps then we can compile ideas and take what we think would or could work in our location back to our clinics in one form or the other.

 

[mom2lillian]

Blondelawyer's blog got me seeing and thinking about the differences among clinics--its amazing! Anyway, as I mentioned in her blog my clinic has a survey from which they solicit improvement and a parent group that serves same purpose while acting as 'liasons' to families. I think any reputable clinic *should* be willing to consider input from their well established patients.

SO, what does your clinic do, what could they do better, or what would be 'ideal' in your eyes. Perhaps then we can compile ideas and take what we think would or could work in our location back to our clinics in one form or the other.

 

[mom2lillian]

<b>Here are some good things I think my clinic does well:</b>

they give each person a code that relates to the type and resistance of bacteria they have and schedule appointments so that there is not an overlap where you are sitting next to someone with BC if you dont have it etc

They call you back for your appointment right away no waiting room

THey pre-admit you so you dont have to go to ER waiting room (unless its night weekend and that has to do with fact talking with doc vs nurse who does EVERYTHIGN for them normally)

once a year you have an appointment with everyone on the staff

thought I hate it they have the pharmacy come in and go over meds and supplements with you to make sure all is kosher

they disinfect thoroughly the room and equiptment between patients

they have a stnad set up with laptop and pfts that they take from room to room instead of having everyone go in the 'pft' room--yucko all that hacking coughing junk in one spot grossed me out and now they dont have clean your room plus pft room after each visit

if someone has multiple resistant bacteria or BC they use a separate PFT that is disinfected each time

you call direct to nurse oryou can call clinic coordinator no calling some central line where they dont know you or your needs etc

they ALWAYS return your phone calls prior to going home

they get you in same day for an appointment whenever needed

they do rounds each day when you are in hospital to see you and coordinate all your care, rx, physio instructions, tests etc though other docs are the actual ones 'there'


<b>Things I would like to see them do better:</b>

have you get CPT in hopsital

train and coordinate hospital staff better

give you a sheet after your visit with all vital info on it and send you copies of test results (I can get them by asking but I think it should be 'standard')

encourage excercise more

be a bit more aggressive and willing to experiment with patients in which it is appropriate

 

[mom2lillian]

<b>Here are some good things I think my clinic does well:</b>

they give each person a code that relates to the type and resistance of bacteria they have and schedule appointments so that there is not an overlap where you are sitting next to someone with BC if you dont have it etc

They call you back for your appointment right away no waiting room

THey pre-admit you so you dont have to go to ER waiting room (unless its night weekend and that has to do with fact talking with doc vs nurse who does EVERYTHIGN for them normally)

once a year you have an appointment with everyone on the staff

thought I hate it they have the pharmacy come in and go over meds and supplements with you to make sure all is kosher

they disinfect thoroughly the room and equiptment between patients

they have a stnad set up with laptop and pfts that they take from room to room instead of having everyone go in the 'pft' room--yucko all that hacking coughing junk in one spot grossed me out and now they dont have clean your room plus pft room after each visit

if someone has multiple resistant bacteria or BC they use a separate PFT that is disinfected each time

you call direct to nurse oryou can call clinic coordinator no calling some central line where they dont know you or your needs etc

they ALWAYS return your phone calls prior to going home

they get you in same day for an appointment whenever needed

they do rounds each day when you are in hospital to see you and coordinate all your care, rx, physio instructions, tests etc though other docs are the actual ones 'there'


<b>Things I would like to see them do better:</b>

have you get CPT in hopsital

train and coordinate hospital staff better

give you a sheet after your visit with all vital info on it and send you copies of test results (I can get them by asking but I think it should be 'standard')

encourage excercise more

be a bit more aggressive and willing to experiment with patients in which it is appropriate

 

[mom2lillian]

<b>Here are some good things I think my clinic does well:</b>

they give each person a code that relates to the type and resistance of bacteria they have and schedule appointments so that there is not an overlap where you are sitting next to someone with BC if you dont have it etc

They call you back for your appointment right away no waiting room

THey pre-admit you so you dont have to go to ER waiting room (unless its night weekend and that has to do with fact talking with doc vs nurse who does EVERYTHIGN for them normally)

once a year you have an appointment with everyone on the staff

thought I hate it they have the pharmacy come in and go over meds and supplements with you to make sure all is kosher

they disinfect thoroughly the room and equiptment between patients

they have a stnad set up with laptop and pfts that they take from room to room instead of having everyone go in the 'pft' room--yucko all that hacking coughing junk in one spot grossed me out and now they dont have clean your room plus pft room after each visit

if someone has multiple resistant bacteria or BC they use a separate PFT that is disinfected each time

you call direct to nurse oryou can call clinic coordinator no calling some central line where they dont know you or your needs etc

they ALWAYS return your phone calls prior to going home

they get you in same day for an appointment whenever needed

they do rounds each day when you are in hospital to see you and coordinate all your care, rx, physio instructions, tests etc though other docs are the actual ones 'there'


<b>Things I would like to see them do better:</b>

have you get CPT in hopsital

train and coordinate hospital staff better

give you a sheet after your visit with all vital info on it and send you copies of test results (I can get them by asking but I think it should be 'standard')

encourage excercise more

be a bit more aggressive and willing to experiment with patients in which it is appropriate

 

[mom2lillian]

<b>Here are some good things I think my clinic does well:</b>

they give each person a code that relates to the type and resistance of bacteria they have and schedule appointments so that there is not an overlap where you are sitting next to someone with BC if you dont have it etc

They call you back for your appointment right away no waiting room

THey pre-admit you so you dont have to go to ER waiting room (unless its night weekend and that has to do with fact talking with doc vs nurse who does EVERYTHIGN for them normally)

once a year you have an appointment with everyone on the staff

thought I hate it they have the pharmacy come in and go over meds and supplements with you to make sure all is kosher

they disinfect thoroughly the room and equiptment between patients

they have a stnad set up with laptop and pfts that they take from room to room instead of having everyone go in the 'pft' room--yucko all that hacking coughing junk in one spot grossed me out and now they dont have clean your room plus pft room after each visit

if someone has multiple resistant bacteria or BC they use a separate PFT that is disinfected each time

you call direct to nurse oryou can call clinic coordinator no calling some central line where they dont know you or your needs etc

they ALWAYS return your phone calls prior to going home

they get you in same day for an appointment whenever needed

they do rounds each day when you are in hospital to see you and coordinate all your care, rx, physio instructions, tests etc though other docs are the actual ones 'there'


<b>Things I would like to see them do better:</b>

have you get CPT in hopsital

train and coordinate hospital staff better

give you a sheet after your visit with all vital info on it and send you copies of test results (I can get them by asking but I think it should be 'standard')

encourage excercise more

be a bit more aggressive and willing to experiment with patients in which it is appropriate

 

[mom2lillian]

<b>Here are some good things I think my clinic does well:</b>

they give each person a code that relates to the type and resistance of bacteria they have and schedule appointments so that there is not an overlap where you are sitting next to someone with BC if you dont have it etc

They call you back for your appointment right away no waiting room

THey pre-admit you so you dont have to go to ER waiting room (unless its night weekend and that has to do with fact talking with doc vs nurse who does EVERYTHIGN for them normally)

once a year you have an appointment with everyone on the staff

thought I hate it they have the pharmacy come in and go over meds and supplements with you to make sure all is kosher

they disinfect thoroughly the room and equiptment between patients

they have a stnad set up with laptop and pfts that they take from room to room instead of having everyone go in the 'pft' room--yucko all that hacking coughing junk in one spot grossed me out and now they dont have clean your room plus pft room after each visit

if someone has multiple resistant bacteria or BC they use a separate PFT that is disinfected each time

you call direct to nurse oryou can call clinic coordinator no calling some central line where they dont know you or your needs etc

they ALWAYS return your phone calls prior to going home

they get you in same day for an appointment whenever needed

they do rounds each day when you are in hospital to see you and coordinate all your care, rx, physio instructions, tests etc though other docs are the actual ones 'there'


<b>Things I would like to see them do better:</b>

have you get CPT in hopsital

train and coordinate hospital staff better

give you a sheet after your visit with all vital info on it and send you copies of test results (I can get them by asking but I think it should be 'standard')

encourage excercise more

be a bit more aggressive and willing to experiment with patients in which it is appropriate

 

[blondelawyer]

I think that having a great nurse coordinator is a must! We have experienced a GREAT coordinator and a not great one and the great coordinator made such a huge difference. The great coordinator returned calls quickly, is compassionate, is knowledgeable about CF and up on new treatments, etc. Also, the coordinator helps coordinate between the different departments--like the liver docs, diabetes, etc. For us, my husband has severe liver problems so it is important to have the CF team on top of that and realizing that the pulmonary needs don't trump others.

The entire team keeping up on new treatments, etc. I don't like having to educate our clinic on the eFlow, etc. Our other clinic also used to have roundtable discussions where all of the teachers would get together and talk about the different patients. Many brains are better than one!

I do love that my husband can get on IV antibotics without stepping foot into the hospital. That is good for quality of life.

Someone from the team should visit at least once a day while in the hosptial. Seriously it will only take 5 minutes, but it means a lot to the patient. We have had entire hospital vists when we havent' seen anyone from the CF team.

Our clinic is really good about telling patients about the available studies and encouraging patients to participate in clinical trials.

 

[blondelawyer]

I think that having a great nurse coordinator is a must! We have experienced a GREAT coordinator and a not great one and the great coordinator made such a huge difference. The great coordinator returned calls quickly, is compassionate, is knowledgeable about CF and up on new treatments, etc. Also, the coordinator helps coordinate between the different departments--like the liver docs, diabetes, etc. For us, my husband has severe liver problems so it is important to have the CF team on top of that and realizing that the pulmonary needs don't trump others.

The entire team keeping up on new treatments, etc. I don't like having to educate our clinic on the eFlow, etc. Our other clinic also used to have roundtable discussions where all of the teachers would get together and talk about the different patients. Many brains are better than one!

I do love that my husband can get on IV antibotics without stepping foot into the hospital. That is good for quality of life.

Someone from the team should visit at least once a day while in the hosptial. Seriously it will only take 5 minutes, but it means a lot to the patient. We have had entire hospital vists when we havent' seen anyone from the CF team.

Our clinic is really good about telling patients about the available studies and encouraging patients to participate in clinical trials.

 

[blondelawyer]

I think that having a great nurse coordinator is a must! We have experienced a GREAT coordinator and a not great one and the great coordinator made such a huge difference. The great coordinator returned calls quickly, is compassionate, is knowledgeable about CF and up on new treatments, etc. Also, the coordinator helps coordinate between the different departments--like the liver docs, diabetes, etc. For us, my husband has severe liver problems so it is important to have the CF team on top of that and realizing that the pulmonary needs don't trump others.

The entire team keeping up on new treatments, etc. I don't like having to educate our clinic on the eFlow, etc. Our other clinic also used to have roundtable discussions where all of the teachers would get together and talk about the different patients. Many brains are better than one!

I do love that my husband can get on IV antibotics without stepping foot into the hospital. That is good for quality of life.

Someone from the team should visit at least once a day while in the hosptial. Seriously it will only take 5 minutes, but it means a lot to the patient. We have had entire hospital vists when we havent' seen anyone from the CF team.

Our clinic is really good about telling patients about the available studies and encouraging patients to participate in clinical trials.

 

[blondelawyer]

I think that having a great nurse coordinator is a must! We have experienced a GREAT coordinator and a not great one and the great coordinator made such a huge difference. The great coordinator returned calls quickly, is compassionate, is knowledgeable about CF and up on new treatments, etc. Also, the coordinator helps coordinate between the different departments--like the liver docs, diabetes, etc. For us, my husband has severe liver problems so it is important to have the CF team on top of that and realizing that the pulmonary needs don't trump others.

The entire team keeping up on new treatments, etc. I don't like having to educate our clinic on the eFlow, etc. Our other clinic also used to have roundtable discussions where all of the teachers would get together and talk about the different patients. Many brains are better than one!

I do love that my husband can get on IV antibotics without stepping foot into the hospital. That is good for quality of life.

Someone from the team should visit at least once a day while in the hosptial. Seriously it will only take 5 minutes, but it means a lot to the patient. We have had entire hospital vists when we havent' seen anyone from the CF team.

Our clinic is really good about telling patients about the available studies and encouraging patients to participate in clinical trials.

 

[blondelawyer]

I think that having a great nurse coordinator is a must! We have experienced a GREAT coordinator and a not great one and the great coordinator made such a huge difference. The great coordinator returned calls quickly, is compassionate, is knowledgeable about CF and up on new treatments, etc. Also, the coordinator helps coordinate between the different departments--like the liver docs, diabetes, etc. For us, my husband has severe liver problems so it is important to have the CF team on top of that and realizing that the pulmonary needs don't trump others.

The entire team keeping up on new treatments, etc. I don't like having to educate our clinic on the eFlow, etc. Our other clinic also used to have roundtable discussions where all of the teachers would get together and talk about the different patients. Many brains are better than one!

I do love that my husband can get on IV antibotics without stepping foot into the hospital. That is good for quality of life.

Someone from the team should visit at least once a day while in the hosptial. Seriously it will only take 5 minutes, but it means a lot to the patient. We have had entire hospital vists when we havent' seen anyone from the CF team.

Our clinic is really good about telling patients about the available studies and encouraging patients to participate in clinical trials.

 

[thefrogprincess]

<b>Things mine does well:</b> (I go to the same one as Lisa and her DH by the way)
*Don't have to leave the room for PFTs, the resp. therapist has everything on a cart that he takes from room to room.

*If I have to get a scrip, they get it called in for me that day (or the next if I call too late in the day).

*Everyone knows me, they remember things that are going on with me that have nothing to do with CF. (wedding last year, hubby's cancer, etc).

<b>Things they need to improve:</b>
*The need to expand their clinic hours. Right now its just Monday mornings which means unless I'm having a problem I usually have to wait about a month to get an appointment. I have also had to wait up to an hour in the waiting room before getting called back to a room. I have to take a whole day off of work because I have no idea how long I will be there. I have actually just left the hospital without seeing one or two people before.

*They need to not be so quick to give someone (at least me) abx, and they need to suggest alternatives if they are appropriate. I had to ask for HTS and a vest.

*The need to be more informative about everything that CF can do to the body. I never knew about CF related arthritis until I found and article on the internet about it.

*They keep putting hubby's phone number as MY phone number and calling him for stuff. We have both told them that they have this wrong but they don't change it.

I will add more as I think of them (good and bad). I just got up so I am not awake yet.

 

[thefrogprincess]

<b>Things mine does well:</b> (I go to the same one as Lisa and her DH by the way)
*Don't have to leave the room for PFTs, the resp. therapist has everything on a cart that he takes from room to room.

*If I have to get a scrip, they get it called in for me that day (or the next if I call too late in the day).

*Everyone knows me, they remember things that are going on with me that have nothing to do with CF. (wedding last year, hubby's cancer, etc).

<b>Things they need to improve:</b>
*The need to expand their clinic hours. Right now its just Monday mornings which means unless I'm having a problem I usually have to wait about a month to get an appointment. I have also had to wait up to an hour in the waiting room before getting called back to a room. I have to take a whole day off of work because I have no idea how long I will be there. I have actually just left the hospital without seeing one or two people before.

*They need to not be so quick to give someone (at least me) abx, and they need to suggest alternatives if they are appropriate. I had to ask for HTS and a vest.

*The need to be more informative about everything that CF can do to the body. I never knew about CF related arthritis until I found and article on the internet about it.

*They keep putting hubby's phone number as MY phone number and calling him for stuff. We have both told them that they have this wrong but they don't change it.

I will add more as I think of them (good and bad). I just got up so I am not awake yet.

 

[thefrogprincess]

<b>Things mine does well:</b> (I go to the same one as Lisa and her DH by the way)
*Don't have to leave the room for PFTs, the resp. therapist has everything on a cart that he takes from room to room.

*If I have to get a scrip, they get it called in for me that day (or the next if I call too late in the day).

*Everyone knows me, they remember things that are going on with me that have nothing to do with CF. (wedding last year, hubby's cancer, etc).

<b>Things they need to improve:</b>
*The need to expand their clinic hours. Right now its just Monday mornings which means unless I'm having a problem I usually have to wait about a month to get an appointment. I have also had to wait up to an hour in the waiting room before getting called back to a room. I have to take a whole day off of work because I have no idea how long I will be there. I have actually just left the hospital without seeing one or two people before.

*They need to not be so quick to give someone (at least me) abx, and they need to suggest alternatives if they are appropriate. I had to ask for HTS and a vest.

*The need to be more informative about everything that CF can do to the body. I never knew about CF related arthritis until I found and article on the internet about it.

*They keep putting hubby's phone number as MY phone number and calling him for stuff. We have both told them that they have this wrong but they don't change it.

I will add more as I think of them (good and bad). I just got up so I am not awake yet.

 

[thefrogprincess]

<b>Things mine does well:</b> (I go to the same one as Lisa and her DH by the way)
*Don't have to leave the room for PFTs, the resp. therapist has everything on a cart that he takes from room to room.

*If I have to get a scrip, they get it called in for me that day (or the next if I call too late in the day).

*Everyone knows me, they remember things that are going on with me that have nothing to do with CF. (wedding last year, hubby's cancer, etc).

<b>Things they need to improve:</b>
*The need to expand their clinic hours. Right now its just Monday mornings which means unless I'm having a problem I usually have to wait about a month to get an appointment. I have also had to wait up to an hour in the waiting room before getting called back to a room. I have to take a whole day off of work because I have no idea how long I will be there. I have actually just left the hospital without seeing one or two people before.

*They need to not be so quick to give someone (at least me) abx, and they need to suggest alternatives if they are appropriate. I had to ask for HTS and a vest.

*The need to be more informative about everything that CF can do to the body. I never knew about CF related arthritis until I found and article on the internet about it.

*They keep putting hubby's phone number as MY phone number and calling him for stuff. We have both told them that they have this wrong but they don't change it.

I will add more as I think of them (good and bad). I just got up so I am not awake yet.

 

[thefrogprincess]

<b>Things mine does well:</b> (I go to the same one as Lisa and her DH by the way)
*Don't have to leave the room for PFTs, the resp. therapist has everything on a cart that he takes from room to room.

*If I have to get a scrip, they get it called in for me that day (or the next if I call too late in the day).

*Everyone knows me, they remember things that are going on with me that have nothing to do with CF. (wedding last year, hubby's cancer, etc).

<b>Things they need to improve:</b>
*The need to expand their clinic hours. Right now its just Monday mornings which means unless I'm having a problem I usually have to wait about a month to get an appointment. I have also had to wait up to an hour in the waiting room before getting called back to a room. I have to take a whole day off of work because I have no idea how long I will be there. I have actually just left the hospital without seeing one or two people before.

*They need to not be so quick to give someone (at least me) abx, and they need to suggest alternatives if they are appropriate. I had to ask for HTS and a vest.

*The need to be more informative about everything that CF can do to the body. I never knew about CF related arthritis until I found and article on the internet about it.

*They keep putting hubby's phone number as MY phone number and calling him for stuff. We have both told them that they have this wrong but they don't change it.

I will add more as I think of them (good and bad). I just got up so I am not awake yet.