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How was transition to adult care for you?

V

vin

New member
Hey everyone, I'm from england and was wondering if you guys could help. I study at a medical school in london and i'm looking at ways transition could be improved for people in the future. Would be great if could tell me about your experiences, which hospital & what you think could be improved?Thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
V

vin

New member
Hey everyone, I'm from england and was wondering if you guys could help. I study at a medical school in london and i'm looking at ways transition could be improved for people in the future. Would be great if could tell me about your experiences, which hospital & what you think could be improved?Thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
V

vin

New member
Hey everyone, I'm from england and was wondering if you guys could help. I study at a medical school in london and i'm looking at ways transition could be improved for people in the future. Would be great if could tell me about your experiences, which hospital & what you think could be improved?Thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
V

vin

New member
Hey everyone, I'm from england and was wondering if you guys could help. I study at a medical school in london and i'm looking at ways transition could be improved for people in the future. Would be great if could tell me about your experiences, which hospital & what you think could be improved?Thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
V

vin

New member
Hey everyone, I'm from england and was wondering if you guys could help. I study at a medical school in london and i'm looking at ways transition could be improved for people in the future. Would be great if could tell me about your experiences, which hospital & what you think could be improved?Thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
Q

Quackie

New member
Ther transition from Peds to Adult clinic?

Hmm... Well I'm doing that right now. I was actully supposed to do it over a year ago, but they took there time. So I guess that can be inproved. Also, my last appoitment at the Peds clinic, I met with the new my new doc. But when I went to make an appoitment at the adult clinic, I had to have a reffereal and they didnt have my records. I know that they have to have my permission to release them, but shouldn't they have gotten that at the transition appoitment??? Why in the world would I need a refferal? If I have already met the doc?? So know I have to wait a few weeks just to make an appoitment and its my annual so...

In general it would be nice if they contacted you when they got the results back from the test wether they be good or bad. I was told 'no news is good news' um hello! I still wanna know how I am doing! And I paid for all of those test, why cant they just contact me to tell me the results? At least a letter would be nice...

Hope that helps.
 
Q

Quackie

New member
Ther transition from Peds to Adult clinic?

Hmm... Well I'm doing that right now. I was actully supposed to do it over a year ago, but they took there time. So I guess that can be inproved. Also, my last appoitment at the Peds clinic, I met with the new my new doc. But when I went to make an appoitment at the adult clinic, I had to have a reffereal and they didnt have my records. I know that they have to have my permission to release them, but shouldn't they have gotten that at the transition appoitment??? Why in the world would I need a refferal? If I have already met the doc?? So know I have to wait a few weeks just to make an appoitment and its my annual so...

In general it would be nice if they contacted you when they got the results back from the test wether they be good or bad. I was told 'no news is good news' um hello! I still wanna know how I am doing! And I paid for all of those test, why cant they just contact me to tell me the results? At least a letter would be nice...

Hope that helps.
 
Q

Quackie

New member
Ther transition from Peds to Adult clinic?

Hmm... Well I'm doing that right now. I was actully supposed to do it over a year ago, but they took there time. So I guess that can be inproved. Also, my last appoitment at the Peds clinic, I met with the new my new doc. But when I went to make an appoitment at the adult clinic, I had to have a reffereal and they didnt have my records. I know that they have to have my permission to release them, but shouldn't they have gotten that at the transition appoitment??? Why in the world would I need a refferal? If I have already met the doc?? So know I have to wait a few weeks just to make an appoitment and its my annual so...

In general it would be nice if they contacted you when they got the results back from the test wether they be good or bad. I was told 'no news is good news' um hello! I still wanna know how I am doing! And I paid for all of those test, why cant they just contact me to tell me the results? At least a letter would be nice...

Hope that helps.
 
Q

Quackie

New member
Ther transition from Peds to Adult clinic?

Hmm... Well I'm doing that right now. I was actully supposed to do it over a year ago, but they took there time. So I guess that can be inproved. Also, my last appoitment at the Peds clinic, I met with the new my new doc. But when I went to make an appoitment at the adult clinic, I had to have a reffereal and they didnt have my records. I know that they have to have my permission to release them, but shouldn't they have gotten that at the transition appoitment??? Why in the world would I need a refferal? If I have already met the doc?? So know I have to wait a few weeks just to make an appoitment and its my annual so...

In general it would be nice if they contacted you when they got the results back from the test wether they be good or bad. I was told 'no news is good news' um hello! I still wanna know how I am doing! And I paid for all of those test, why cant they just contact me to tell me the results? At least a letter would be nice...

Hope that helps.
 
Q

Quackie

New member
Ther transition from Peds to Adult clinic?

Hmm... Well I'm doing that right now. I was actully supposed to do it over a year ago, but they took there time. So I guess that can be inproved. Also, my last appoitment at the Peds clinic, I met with the new my new doc. But when I went to make an appoitment at the adult clinic, I had to have a reffereal and they didnt have my records. I know that they have to have my permission to release them, but shouldn't they have gotten that at the transition appoitment??? Why in the world would I need a refferal? If I have already met the doc?? So know I have to wait a few weeks just to make an appoitment and its my annual so...

In general it would be nice if they contacted you when they got the results back from the test wether they be good or bad. I was told 'no news is good news' um hello! I still wanna know how I am doing! And I paid for all of those test, why cant they just contact me to tell me the results? At least a letter would be nice...

Hope that helps.
 
J

JazzysMom

New member
In general it was quite easy for me since both the Pediatric & Adult Programs are in the same clinic. Its just as to which doctor is primary in your care. The Nurse, therapists etc are all the same.

What I did find "rattling" is the realization of problems that come with "beating the odds" by getting older. Testing for bone density, CFRD etc. As a child they werent issues for me.

My heart goes out to those whose whole world get turned upside down by the transitions. I hate change & it most definitely affects my mood which affects by health.
 
J

JazzysMom

New member
In general it was quite easy for me since both the Pediatric & Adult Programs are in the same clinic. Its just as to which doctor is primary in your care. The Nurse, therapists etc are all the same.

What I did find "rattling" is the realization of problems that come with "beating the odds" by getting older. Testing for bone density, CFRD etc. As a child they werent issues for me.

My heart goes out to those whose whole world get turned upside down by the transitions. I hate change & it most definitely affects my mood which affects by health.
 
J

JazzysMom

New member
In general it was quite easy for me since both the Pediatric & Adult Programs are in the same clinic. Its just as to which doctor is primary in your care. The Nurse, therapists etc are all the same.

What I did find "rattling" is the realization of problems that come with "beating the odds" by getting older. Testing for bone density, CFRD etc. As a child they werent issues for me.

My heart goes out to those whose whole world get turned upside down by the transitions. I hate change & it most definitely affects my mood which affects by health.
 
J

JazzysMom

New member
In general it was quite easy for me since both the Pediatric & Adult Programs are in the same clinic. Its just as to which doctor is primary in your care. The Nurse, therapists etc are all the same.

What I did find "rattling" is the realization of problems that come with "beating the odds" by getting older. Testing for bone density, CFRD etc. As a child they werent issues for me.

My heart goes out to those whose whole world get turned upside down by the transitions. I hate change & it most definitely affects my mood which affects by health.
 
J

JazzysMom

New member
In general it was quite easy for me since both the Pediatric & Adult Programs are in the same clinic. Its just as to which doctor is primary in your care. The Nurse, therapists etc are all the same.

What I did find "rattling" is the realization of problems that come with "beating the odds" by getting older. Testing for bone density, CFRD etc. As a child they werent issues for me.

My heart goes out to those whose whole world get turned upside down by the transitions. I hate change & it most definitely affects my mood which affects by health.
 
T

thefrogprincess

New member
I had a wierd transition which was my own fault. I went through a "I am so sick of hearing that my health is fine" phase where I felt like I didn't need to go in every 3 months just to be told that I am doing great and keep it up. Finally I woke up and realized that I do need to go. So I had long stint where I didn't see any CF doc and by the time I started going back I had to go to the adult clinic. One thing I do like about my clinic though is that some of the staff is shared. Some of the nurses and even one of the docs also works at the Children's Clinic. I have even gone to Children's for a couple of research studies.
 
T

thefrogprincess

New member
I had a wierd transition which was my own fault. I went through a "I am so sick of hearing that my health is fine" phase where I felt like I didn't need to go in every 3 months just to be told that I am doing great and keep it up. Finally I woke up and realized that I do need to go. So I had long stint where I didn't see any CF doc and by the time I started going back I had to go to the adult clinic. One thing I do like about my clinic though is that some of the staff is shared. Some of the nurses and even one of the docs also works at the Children's Clinic. I have even gone to Children's for a couple of research studies.
 
T

thefrogprincess

New member
I had a wierd transition which was my own fault. I went through a "I am so sick of hearing that my health is fine" phase where I felt like I didn't need to go in every 3 months just to be told that I am doing great and keep it up. Finally I woke up and realized that I do need to go. So I had long stint where I didn't see any CF doc and by the time I started going back I had to go to the adult clinic. One thing I do like about my clinic though is that some of the staff is shared. Some of the nurses and even one of the docs also works at the Children's Clinic. I have even gone to Children's for a couple of research studies.
 
T

thefrogprincess

New member
I had a wierd transition which was my own fault. I went through a "I am so sick of hearing that my health is fine" phase where I felt like I didn't need to go in every 3 months just to be told that I am doing great and keep it up. Finally I woke up and realized that I do need to go. So I had long stint where I didn't see any CF doc and by the time I started going back I had to go to the adult clinic. One thing I do like about my clinic though is that some of the staff is shared. Some of the nurses and even one of the docs also works at the Children's Clinic. I have even gone to Children's for a couple of research studies.
 
T

thefrogprincess

New member
I had a wierd transition which was my own fault. I went through a "I am so sick of hearing that my health is fine" phase where I felt like I didn't need to go in every 3 months just to be told that I am doing great and keep it up. Finally I woke up and realized that I do need to go. So I had long stint where I didn't see any CF doc and by the time I started going back I had to go to the adult clinic. One thing I do like about my clinic though is that some of the staff is shared. Some of the nurses and even one of the docs also works at the Children's Clinic. I have even gone to Children's for a couple of research studies.
 
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