Parent Advisory Committee - Meeting 1

Sorry that it's taken me so long to post about the awesome meeting we attended. More about this weekend in the next post. We had Olivia with us so only one of us was in the room at a time so I had to wait for a copy of the notes. The group consists of 3 CF Team members and about 15 CF families. It was great for us to meet other families that we will be able to draw from their experience (from CF care, insurance questions, daily life, etc.). For the sake of time, I'm going to just copy and paste info from the meeting notes that were e-mailed to me.

1st identified was a need for family communication groups or support groups
Ø Advocacy for issues i.e.: insurance. Decided to identify everyone’s strengths and be available for new/existing families
Ø Come up with a family resource book and have representatives available to other families
Ø Put together a guide of families who wish to participate
Ø Look at insurance issues
Ø Put together informational meetings based on described needs
Ø Hold educational meetings i.e.: school issues
Ø Identify for families what they can expect from team/center and make this information available
Ø Identify means of communication for all families
Ø Disseminate appropriate information compiled in one place (i.e. books, articles on trials, etc), handouts
Ø Kids section for the patients in newsletter as well as this information.

Overall agreement was that the group would need to get together to discuss and get to know each other’s strengths and then begin working on a communication brochure for families.

Other information to include from the meeting is that ultimate goal is for this committee to become a functioning group without need of East Tenneessee Children's Hospital staff but that ETCH staff will be there to provide resources and help as needed. Also, that eventually one member from this committee will sit on the larger hospital Family Advisory Committee to give a voice to the CF Center patient and families.

We have our next meeting January 22.