Long time coming…

Posted on January 9, 2008. Filed under: Raising the Bar for CF Care | Tags: , , , |

Not being one to leave well enough alone, I’m constantly on the lookout for new and innovative ways to implement family centered care practices into our healthcare settings. Taking a page from the Project DOCC program, I began to contemplate the possibility of taking it to the next step: instead of addressing a broad range of chronic illness, target specific diagnoses and work with those specialists and teams that treat those specific illnesses. I spent several weeks mulling the options over and finally contacted Maggie Hoffman, one of the creators of the Project DOCC curriculum.

I was overjoyed to find that she not only understood the concept I was proposing, she had already begun working with other groups with various diagnoses to implement presentations specifically geared toward certain medical conditions. Maggie Hoffman, my hero and esteemed visionary, has agreed to partner with me to develop programs appropriate for Cystic Fibrosis Care Centers across the country. What a phenomenal endeavor we have agreed to undertake.

There remains a tremendous amount of work to be done – all in due time.

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Paula–please let me know if I can be of assistance in any way. I have been disheartened by the CF care available in my home state, and made it my mission to find better care for my Finnegan. We now travel two hours each way every two months for our regular follow-ups. the difference in his care is already night and day–I feel like i am finally seeing the light. I believe that parent input is so important. as a clinical social worker I advocate for others ALL the time. want to use my skills for my Finn and others with CF. with all you are going through with Allies troubles, that you are willing even to think like this is AMAZING. go you!

Kerry…

Thank you! The program is in seedling development stage, but I’d love your input! I’ll email you soon with some rough ideas and we’ll take it from there! Hope all is well with Finn!

Paula


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