Guest guest Posted May 7, 2009 Report Share Posted May 7, 2009 I have done this for the IDF. Kathy would give me the name and number of a parent starting SubQ with their child. I would call and talk to the parent, and if the child wanted to, they could talk to . He told them what it feels like, etc. (Isn't that right ???? LOL) I have not done it for Viva. It was fun, and I met some friends that I cherish. I say go for it! From: mistycmathis@... Date: Fri, 8 May 2009 00:13:43 +0000 Subject: Patient advocates Are any of you doing this? I had to take Jake in today to have his port flushed, we are having it removed soon, Jake started SubQ Vivaglo bin and it has been wonderful for us. Anyway, his regular nurse was flushing the port and I was picking up his monthly supplies while I was there. After we were finished a lady approached me and we were talking about Jake and how I felt about our switch to SubQ Viva...then she follows it up with...We need a Patient Advocate to talk to parents and help raise awareness to PIDD and we would like to know if your are interested in doing it. Are any of you doing this? If you are, what does it entail? I think I would enjoy doing it because I am so passionate about PIDD...the part I am really interested in is raising awareness of PIDD. Mitch from Vivaglobin is going to be contacting me to discuss it further. I just wanted to get some input from you guys and see what you think about it. I think I would enjoy the opportunity. Misty Jake age 7 selective antibody def. _________________________________________________________________ Hotmail® has a new way to see what's up with your friends. http://windowslive.com/Tutorial/Hotmail/WhatsNew?ocid=TXT_TAGLM_WL_HM_Tutorial_W\ hatsNew1_052009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2009 Report Share Posted May 7, 2009 Misty - I do such a thing with the IDF. But it does come with drawbacks. You can easily get into a situation where if you are too medically minded the doctors will start to avoid you. You don't need that as a patient/family member. Also there are legalities involved. It has taken several training sessions for us to know what we can say and what we can't and how far to take conversations and not overstep. Sometimes it involves phone calls from new families at all hours and they don't always want to hear what we have to say. Not everyone is informed the right way by their doctors and it's not always our place to set the record straight. Unless it is a paid position by the hospital then if something were to happen I can promise you they wouldn't have your back. I love what I do with the IDF but it has taken years to get comfortable with the limits and having this group helped because I had a test-run with fiesty families before I joined the IDF. Ursula Holleman mom to (16) and Macey (13) www.caringbridge.org/visit/maceyholleman From: mistycmathis@... Date: Fri, 8 May 2009 00:13:43 +0000 Subject: Patient advocates Are any of you doing this? I had to take Jake in today to have his port flushed, we are having it removed soon, Jake started SubQ Vivaglo bin and it has been wonderful for us. Anyway, his regular nurse was flushing the port and I was picking up his monthly supplies while I was there. After we were finished a lady approached me and we were talking about Jake and how I felt about our switch to SubQ Viva...then she follows it up with...We need a Patient Advocate to talk to parents and help raise awareness to PIDD and we would like to know if your are interested in doing it. Are any of you doing this? If you are, what does it entail? I think I would enjoy doing it because I am so passionate about PIDD...the part I am really interested in is raising awareness of PIDD. Mitch from Vivaglobin is going to be contacting me to discuss it further. I just wanted to get some input from you guys and see what you think about it. I think I would enjoy the opportunity. Misty Jake age 7 selective antibody def. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2009 Report Share Posted May 8, 2009 Thanks for telling me this! I want to know the good along with the bad! What you mentioned is something that crossed my mind today. Thanks!! Misty > > > Misty - I do such a thing with the IDF. But it does come with drawbacks. You can easily get into a situation where if you are too medically minded the doctors will start to avoid you. You don't need that as a patient/family member. Also there are legalities involved. It has taken several training sessions for us to know what we can say and what we can't and how far to take conversations and not overstep. Sometimes it involves phone calls from new families at all hours and they don't always want to hear what we have to say. Not everyone is informed the right way by their doctors and it's not always our place to set the record straight. Unless it is a paid position by the hospital then if something were to happen I can promise you they wouldn't have your back. > > > > I love what I do with the IDF but it has taken years to get comfortable with the limits and having this group helped because I had a test-run with fiesty families before I joined the IDF. > > > > Ursula Holleman > mom to (16) and Macey (13) > www.caringbridge.org/visit/maceyholleman > > > > > > > > > From: mistycmathis@... > Date: Fri, 8 May 2009 00:13:43 +0000 > Subject: Patient advocates > > > > > > > > Are any of you doing this? I had to take Jake in today to have his port flushed, we are having it removed soon, Jake started SubQ Vivaglo bin and it has been wonderful for us. Anyway, his regular nurse was flushing the port and I was picking up his monthly supplies while I was there. After we were finished a lady approached me and we were talking about Jake and how I felt about our switch to SubQ Viva...then she follows it up with...We need a Patient Advocate to talk to parents and help raise awareness to PIDD and we would like to know if your are interested in doing it. Are any of you doing this? If you are, what does it entail? I think I would enjoy doing it because I am so passionate about PIDD...the part I am really interested in is raising awareness of PIDD. Mitch from Vivaglobin is going to be contacting me to discuss it further. I just wanted to get some input from you guys and see what you think about it. I think I would enjoy the opportunity. > > Misty > Jake age 7 selective antibody def. > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2010 Report Share Posted August 9, 2010 Members of SelectCare Benefits Network have access to a Personal Care Advocate who will match their individual prescriptions to the appropriate medication assistance program, fill out all of the necessary documents for participation, forward those documents for signatures and follow up when it is time to re-order. http://www.myrxadvocate.com/careAdvocate.php ______________________________________ Self-Advocacy: Putting Your Skills into Action http://www.canceradvocacy.org/toolbox/toolbox-in-action/ _____________________________________ As of 08/09/2010 there is information on 505 programs and companies. The list includes companies that don't have patient assistance programs. We include these companies so you know they don't have one. www.Needymeds.com Patient Advocate newsletter http://www.needymeds.org/indices/pan.shtml _______________________________________ Bristol Myers Squibb for Sprycel assistance http://www.destinationaccess.com/ _______________________________________ Free or low cost clinics across the country http://www.needymeds.org/free_clinics.taf ________________________________________ Hope someone can can get help from one of the above. FYI, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.