NO Clinic nurse

Rebjane · Oct 17, 2010

Our local clinic got rid of our CF nurse this past year. Does your clinic have an RN dedicated for your Cf clinic? Right now, they only have a Medical assistant but I am sure they have little minimal training about CF. Of course this is all due to financial constraints of the hospital.

My many concerns are will this affect the accredation(sp?) of our clinic?

Also, the education piece is now lacking for our CF clinic care. I feel very comfortable with my knowledge base as well as being an RN myself. Our CF doc jokingly(I think) even asked me if I wanted a job. I have offered my support on volunteer basis more as a mom than nurse but have had no one actually utilize this offer.

What are your thoughts on this issue? Thanks.

REbecca

Rebjane · Oct 17, 2010

Our local clinic got rid of our CF nurse this past year. Does your clinic have an RN dedicated for your Cf clinic? Right now, they only have a Medical assistant but I am sure they have little minimal training about CF. Of course this is all due to financial constraints of the hospital.

My many concerns are will this affect the accredation(sp?) of our clinic?

Also, the education piece is now lacking for our CF clinic care. I feel very comfortable with my knowledge base as well as being an RN myself. Our CF doc jokingly(I think) even asked me if I wanted a job. I have offered my support on volunteer basis more as a mom than nurse but have had no one actually utilize this offer.

What are your thoughts on this issue? Thanks.

REbecca

Rebjane · Oct 17, 2010

Our local clinic got rid of our CF nurse this past year. Does your clinic have an RN dedicated for your Cf clinic? Right now, they only have a Medical assistant but I am sure they have little minimal training about CF. Of course this is all due to financial constraints of the hospital.
 
 My many concerns are will this affect the accredation(sp?) of our clinic?
 
 Also, the education piece is now lacking for our CF clinic care. I feel very comfortable with my knowledge base as well as being an RN myself. Our CF doc jokingly(I think) even asked me if I wanted a job. I have offered my support on volunteer basis more as a mom than nurse but have had no one actually utilize this offer.
 
 What are your thoughts on this issue? Thanks.
 
 REbecca

hmw · Oct 17, 2010

If we lost our nurse, we'd be losing an important piece of the team at our clinic. She's the one that I speak to first on the phone when Emily is sick, and since she sees Emily at every clinic appt, she knows Emily's hx and has a lot of good information and insight to offer before she takes our concerns to the dr. She's a reliable, knowledgeable go-between between me and the dr. We see her at every clinic appt and I think she's more valuable than a med. assistant ever could be.

I agree that the education piece would be lacking for those newer to dx, since they simply have more time. It's nothing against the drs, it's just reality. Those of us not new to the dx need less education, but there will always be new ones and they need the undivided attention and knowledge that they simply cannot get from a med assistant. Our nurse is also the clinical coordinator of the center; not sure who would replace her if she was canned due to budget concerns.

I am not sure on how it would affect accreditation. But I do think it would be taxing on the center overall, taking up the slack in what the nurse accomplished and would have a negative impact on the center.

hmw · Oct 17, 2010

If we lost our nurse, we'd be losing an important piece of the team at our clinic. She's the one that I speak to first on the phone when Emily is sick, and since she sees Emily at every clinic appt, she knows Emily's hx and has a lot of good information and insight to offer before she takes our concerns to the dr. She's a reliable, knowledgeable go-between between me and the dr. We see her at every clinic appt and I think she's more valuable than a med. assistant ever could be.

I agree that the education piece would be lacking for those newer to dx, since they simply have more time. It's nothing against the drs, it's just reality. Those of us not new to the dx need less education, but there will always be new ones and they need the undivided attention and knowledge that they simply cannot get from a med assistant. Our nurse is also the clinical coordinator of the center; not sure who would replace her if she was canned due to budget concerns.

I am not sure on how it would affect accreditation. But I do think it would be taxing on the center overall, taking up the slack in what the nurse accomplished and would have a negative impact on the center.

hmw · Oct 17, 2010

If we lost our nurse, we'd be losing an important piece of the team at our clinic. She's the one that I speak to first on the phone when Emily is sick, and since she sees Emily at every clinic appt, she knows Emily's hx and has a lot of good information and insight to offer before she takes our concerns to the dr. She's a reliable, knowledgeable go-between between me and the dr. We see her at every clinic appt and I think she's more valuable than a med. assistant ever could be.
 
 I agree that the education piece would be lacking for those newer to dx, since they simply have more time. It's nothing against the drs, it's just reality. Those of us not new to the dx need less education, but there will always be new ones and they need the undivided attention and knowledge that they simply cannot get from a med assistant. Our nurse is also the clinical coordinator of the center; not sure who would replace her if she was canned due to budget concerns.
 
 I am not sure on how it would affect accreditation. But I do think it would be taxing on the center overall, taking up the slack in what the nurse accomplished and would have a negative impact on the center.

Mommafirst · Oct 17, 2010

WOW, I'm SHOCKED that they let go of their CF nurse!!! Our clinic has THREE of them. 1 for the adult center and 2 for the peds center. Total, we have about 200 patients at the center. Our CF nurses are essential. They keep clinic running smoothly, making sure that every patient gets all the specialties into their appointments in a timely manner, makes sure that we get any meds/prescriptions/equipment before we leave, giving shots or taking blood or managing picc line issues. They are the go to people when you have a question and when you are going through diagnosis.

One of our CF nurses took a one year leave while she was battling breast cancer. Of course everyone understood, supported her, and no one complained. But it left incredible amounts of work for the other peds CF nurse such that they had to hire a new nurse to fill in. Although the fill in didn't have a great deal of CF experience, she helped enough so that the other two could keep things going.

I'm not really sure if this will hurt your accredidation, but I'd be concerned about what this means too. Are you involved with your CF patient advisory board? You might contact that group to see what their thoughts are and if they know of any alternatives that are in the works.

Mommafirst · Oct 17, 2010

WOW, I'm SHOCKED that they let go of their CF nurse!!! Our clinic has THREE of them. 1 for the adult center and 2 for the peds center. Total, we have about 200 patients at the center. Our CF nurses are essential. They keep clinic running smoothly, making sure that every patient gets all the specialties into their appointments in a timely manner, makes sure that we get any meds/prescriptions/equipment before we leave, giving shots or taking blood or managing picc line issues. They are the go to people when you have a question and when you are going through diagnosis.

One of our CF nurses took a one year leave while she was battling breast cancer. Of course everyone understood, supported her, and no one complained. But it left incredible amounts of work for the other peds CF nurse such that they had to hire a new nurse to fill in. Although the fill in didn't have a great deal of CF experience, she helped enough so that the other two could keep things going.

I'm not really sure if this will hurt your accredidation, but I'd be concerned about what this means too. Are you involved with your CF patient advisory board? You might contact that group to see what their thoughts are and if they know of any alternatives that are in the works.

Mommafirst · Oct 17, 2010

WOW, I'm SHOCKED that they let go of their CF nurse!!! Our clinic has THREE of them. 1 for the adult center and 2 for the peds center. Total, we have about 200 patients at the center. Our CF nurses are essential. They keep clinic running smoothly, making sure that every patient gets all the specialties into their appointments in a timely manner, makes sure that we get any meds/prescriptions/equipment before we leave, giving shots or taking blood or managing picc line issues. They are the go to people when you have a question and when you are going through diagnosis.
 
 One of our CF nurses took a one year leave while she was battling breast cancer. Of course everyone understood, supported her, and no one complained. But it left incredible amounts of work for the other peds CF nurse such that they had to hire a new nurse to fill in. Although the fill in didn't have a great deal of CF experience, she helped enough so that the other two could keep things going.
 
 I'm not really sure if this will hurt your accredidation, but I'd be concerned about what this means too. Are you involved with your CF patient advisory board? You might contact that group to see what their thoughts are and if they know of any alternatives that are in the works.

Rebjane · Oct 17, 2010

This clinic is VERY small..Maybe total 40-45 patients including adults(I think). My guess is that the Doc is picking up the workload. I have not a had a problem yet with scripts getting called in. I am extremely well versed in the health care system so I have always managed the in and outs of the services my daughter needs.

there is no patient advisory board. Though if I had time this is something I could help with... Like I said I've mentioned to the social worker about being a support for newly diagnosed patients.

The medical assistant gave Maggie her flu shot. The last time Maggie had a PICC line; I did all the IV meds, flushes, etc...even they wanted me to do her dressing changes...It was too hard that time as she was only 2 and needed her mom to hold her, not change the Picc dressing..However, she is almost 8 yikes! and I think would be ok with me doing it now...Just been a while since she's needed IV's...5 years...I know those days are numbered..

Rebjane · Oct 17, 2010

This clinic is VERY small..Maybe total 40-45 patients including adults(I think). My guess is that the Doc is picking up the workload. I have not a had a problem yet with scripts getting called in. I am extremely well versed in the health care system so I have always managed the in and outs of the services my daughter needs.

there is no patient advisory board. Though if I had time this is something I could help with... Like I said I've mentioned to the social worker about being a support for newly diagnosed patients.

The medical assistant gave Maggie her flu shot. The last time Maggie had a PICC line; I did all the IV meds, flushes, etc...even they wanted me to do her dressing changes...It was too hard that time as she was only 2 and needed her mom to hold her, not change the Picc dressing..However, she is almost 8 yikes! and I think would be ok with me doing it now...Just been a while since she's needed IV's...5 years...I know those days are numbered..

Rebjane · Oct 17, 2010

This clinic is VERY small..Maybe total 40-45 patients including adults(I think). My guess is that the Doc is picking up the workload. I have not a had a problem yet with scripts getting called in. I am extremely well versed in the health care system so I have always managed the in and outs of the services my daughter needs.
 
 there is no patient advisory board. Though if I had time this is something I could help with... Like I said I've mentioned to the social worker about being a support for newly diagnosed patients.
 
 The medical assistant gave Maggie her flu shot. The last time Maggie had a PICC line; I did all the IV meds, flushes, etc...even they wanted me to do her dressing changes...It was too hard that time as she was only 2 and needed her mom to hold her, not change the Picc dressing..However, she is almost 8 yikes! and I think would be ok with me doing it now...Just been a while since she's needed IV's...5 years...I know those days are numbered..

JennifersHope · Oct 18, 2010

I don't think it is a good idea not to have a CF nurse... As you know I am a nurse myself, I can change a PICC line dressing, I can flush a port, I am port certified as a nurse, I have critical care training and a few years of Emergency and Trauma nursing under my belt and in no way shape or form could I live without my CF nurse ever.

I am at best, since no one on the planet knows about my other gene type an a-typical CFer and that is at best here and I still would not trust myself to be able to be objective when it comes to me. I am probably more level headed about myself and tend to down play things, but if it was my child, no way could I be objective... too much love.

I think you have to have a full team to keep your accreditation. I hope they get a new nurse soon or that someone steps up to the plate.

You are mom to your child, I know as a mom you do a lot of nursing duties, but even at 8 she is going to need you to hold her hand, not change her dressings when she is scared.

That is just how I think, that doesn't mean it is right for you though.

JennifersHope · Oct 18, 2010

I don't think it is a good idea not to have a CF nurse... As you know I am a nurse myself, I can change a PICC line dressing, I can flush a port, I am port certified as a nurse, I have critical care training and a few years of Emergency and Trauma nursing under my belt and in no way shape or form could I live without my CF nurse ever.

I am at best, since no one on the planet knows about my other gene type an a-typical CFer and that is at best here and I still would not trust myself to be able to be objective when it comes to me. I am probably more level headed about myself and tend to down play things, but if it was my child, no way could I be objective... too much love.

I think you have to have a full team to keep your accreditation. I hope they get a new nurse soon or that someone steps up to the plate.

You are mom to your child, I know as a mom you do a lot of nursing duties, but even at 8 she is going to need you to hold her hand, not change her dressings when she is scared.

That is just how I think, that doesn't mean it is right for you though.

JennifersHope · Oct 18, 2010

I don't think it is a good idea not to have a CF nurse... As you know I am a nurse myself, I can change a PICC line dressing, I can flush a port, I am port certified as a nurse, I have critical care training and a few years of Emergency and Trauma nursing under my belt and in no way shape or form could I live without my CF nurse ever.
 
 I am at best, since no one on the planet knows about my other gene type an a-typical CFer and that is at best here and I still would not trust myself to be able to be objective when it comes to me. I am probably more level headed about myself and tend to down play things, but if it was my child, no way could I be objective... too much love.
 
 I think you have to have a full team to keep your accreditation. I hope they get a new nurse soon or that someone steps up to the plate.
 
 You are mom to your child, I know as a mom you do a lot of nursing duties, but even at 8 she is going to need you to hold her hand, not change her dressings when she is scared.
 
 That is just how I think, that doesn't mean it is right for you though.

hmw · Oct 18, 2010

I completely agree with Jennifer and am glad to see her post from the adult perspective.

You are able to do a lot more for your daughter than 99% of the other parents, but even though you may be capable, you shouldn't be obligated to be nurse because they cannot provide one. That is just wrong. The center is doing a big disservice to the other families that cannot be to their child what you can be to yours, and who do not have the breadth of knowledge and experience that you have (i.e. parents of babies or other new dx'ed kids.) Parent support and the social worker- tell me you still have one of those! can be valuable, but a skilled CF nurse is an integral part of the center, whether there are 40 patients or hundreds.

As Heather posted re. her center, the adult side of ours has their own CF nurse (for about 40-50 patients); there are 2 regular RN's in the ped pulmonary clinic and then the CF nurse, who is our clinical coordinator, for about 100-110 ped patients. I have spoken to the other nurses in a pinch- occasions I've called when the CF nurse wasn't available- and they are ok, and they are fine when all I need is a script called in- but I'd be lost w/o our CF nurse. The others are nice and try to be helpful, but just do not have the specialized knowledge we need them to have. I couldn't imagine having to deal with a med. assistant.

If a dr. has to take over the nurse responsibilities, that will overburden the dr, and patient care will suffer.

hmw · Oct 18, 2010

I completely agree with Jennifer and am glad to see her post from the adult perspective.

You are able to do a lot more for your daughter than 99% of the other parents, but even though you may be capable, you shouldn't be obligated to be nurse because they cannot provide one. That is just wrong. The center is doing a big disservice to the other families that cannot be to their child what you can be to yours, and who do not have the breadth of knowledge and experience that you have (i.e. parents of babies or other new dx'ed kids.) Parent support and the social worker- tell me you still have one of those! can be valuable, but a skilled CF nurse is an integral part of the center, whether there are 40 patients or hundreds.

As Heather posted re. her center, the adult side of ours has their own CF nurse (for about 40-50 patients); there are 2 regular RN's in the ped pulmonary clinic and then the CF nurse, who is our clinical coordinator, for about 100-110 ped patients. I have spoken to the other nurses in a pinch- occasions I've called when the CF nurse wasn't available- and they are ok, and they are fine when all I need is a script called in- but I'd be lost w/o our CF nurse. The others are nice and try to be helpful, but just do not have the specialized knowledge we need them to have. I couldn't imagine having to deal with a med. assistant.

If a dr. has to take over the nurse responsibilities, that will overburden the dr, and patient care will suffer.

hmw · Oct 18, 2010

I completely agree with Jennifer and am glad to see her post from the adult perspective.
 
 You are able to do a lot more for your daughter than 99% of the other parents, but even though you may be capable, you shouldn't be obligated to be nurse because they cannot provide one. That is just wrong. The center is doing a big disservice to the other families that cannot be to their child what you can be to yours, and who do not have the breadth of knowledge and experience that you have (i.e. parents of babies or other new dx'ed kids.) Parent support and the social worker- tell me you still have one of those! can be valuable, but a skilled CF nurse is an integral part of the center, whether there are 40 patients or hundreds.
 
 As Heather posted re. her center, the adult side of ours has their own CF nurse (for about 40-50 patients); there are 2 regular RN's in the ped pulmonary clinic and then the CF nurse, who is our clinical coordinator, for about 100-110 ped patients. I have spoken to the other nurses in a pinch- occasions I've called when the CF nurse wasn't available- and they are ok, and they are fine when all I need is a script called in- but I'd be lost w/o our CF nurse. The others are nice and try to be helpful, but just do not have the specialized knowledge we need them to have. I couldn't imagine having to deal with a med. assistant.
 
 If a dr. has to take over the nurse responsibilities, that will overburden the dr, and patient care will suffer.

Rebjane · Oct 18, 2010

I totally agree with all of you. I am mom first absolutely...If something unusual came up what would we do? Likely go to the CF clinic we've gone to in the past 5 more hours away.

I should clarify, when Maggie had a PICC we had a home care company/nurse come in...They did do the dressing changes. I am a huge control freak and comfortable with PICC line at the time so maintenance of it myself made me more comfortable, less germs coming in the home etc. There was a CF nurse at clinic during this time period, the home care company was the one who set up the stuff for IV's.

The bottom line is the finances at the hospital. This is concerning. I doubt they will replace the RN position because I bet it was a cost cutting measure. However if it affects the CFF accrecdiation is it worth it? I trust our CF doc, love our nutritionist. They are my main go to people. I should look into setting up a Parent advisory board..If only there were 48 hours in one day.

Rebjane · Oct 18, 2010

I totally agree with all of you. I am mom first absolutely...If something unusual came up what would we do? Likely go to the CF clinic we've gone to in the past 5 more hours away.

I should clarify, when Maggie had a PICC we had a home care company/nurse come in...They did do the dressing changes. I am a huge control freak and comfortable with PICC line at the time so maintenance of it myself made me more comfortable, less germs coming in the home etc. There was a CF nurse at clinic during this time period, the home care company was the one who set up the stuff for IV's.

The bottom line is the finances at the hospital. This is concerning. I doubt they will replace the RN position because I bet it was a cost cutting measure. However if it affects the CFF accrecdiation is it worth it? I trust our CF doc, love our nutritionist. They are my main go to people. I should look into setting up a Parent advisory board..If only there were 48 hours in one day.

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