In the fall of 2008, several adults with CF and the Adult CF Program staff launched the Adult Advisory Board.
The Board was formed to address topics of particular concern to the adult CF community and to complement the activities of the PFAB (Patient/Family Advisory Board). The group meets monthly via telephone conference from September through June and is attended by a representative group of enthusiastic CF patients and members of the Adult CF Program.
The overarching purpose of the Board is to improve the quality of care through partnership of staff and the adult patient community. Ideas for projects originate with any member of the Board and completion of "task group work" occurs collaboratively as well.
Here are a few of the Board's accomplishments to date:
- Improvements to inpatient CF care
- Launch of the Adult CF Newsletter
- Improving patient/ office communication
- Contributions to the Center's Education Day events
- Established our own CF Facebook group, "CF in the CT"
Future work will include annual updates to our Center's website, ongoing improvements to the clinic experience, continued input on the Newsletter, Education events and Inpatient care, and fundraising projects.
Meet the Board Members
I decided to join the Adult Advisory board because I was a new patient to Harford Hospital. I came from Boston Children’s and Brigham and Woman’s Hospital, where I was a patient for 28 years. I was one of the first adult patients to transition from Boston Children’s to Bringham and Woman’s and assisted with others in making that transition. I felt I could bring the positive ideas that I have seen implemented in Boston Hospitals to work at Hartford Hospital. I like having a voice in my treatment, and want the best possible care for everyone with CF.
One idea that I would like to bring to the Adult Advisory Board is the idea of fundraising for children and adults who are inpatient at either Hartford Hospital or at CT Children’s Medical Center, specifically those with Cystic Fibrosis complications. I hope to raise funds and make sure that they get a little extra something around their birthdays or holidays while in the hospital.
I joined the Adult Advisory Board because I would like to make a positive impact on the clinic regarding procedures, the physical appearance, education and helping those transitioning to the Adult CF Clinic from the Children’s CF Clinic. Being older, at 57, I hope to help inspire younger patients. I also have been accepted at two lung transplant centers so I hope my experience and journey could be helpful to those considering lung transplant. I like that all ideas are welcomed on the Adult Advisory Board. There is a positive vibe and everyone has the same goals, to be supportive and do more for our CF community.
I decided to join the Adult Advisory Board because it's something worthwhile to do while I'm not working. It keeps my mind occupied and allows me to be useful.
I like being on the board because the clinic staff actually does take patient opinions and suggestions into account. I have been pleased to see more than one change made based on things I've mentioned.
As someone who has lived in nine states, I feel my experience at many different clinics gives me knowledge I should share with the clinic. The advisory board is a forum to disseminate this information in a helpful manner. I think our group benefits by having a diverse membership. As a member of the advisory board, I feel like I know what is going on and that gives me a greater feeling of control over my cf.
Sound interesting? Fun?
Please join us, bring your ideas and help the Cystic Fibrosis Adult Advisory board to propel the care and life of cystic fibrosis patients at Hartford Hospital to an unforeseen level.
Participation in the Adult Advisory Board is a great way to shape your
experience as a patient and to have a direct impact on improving the CF
Center as a whole. It’s also an opportunity to connect with other
members of the adult CF community and to interact with the CF Program
staff outside of clinic. We welcome additional members to the AAB, so if
you are interested or just want to know more about us please contact
Amy Mueller, LCSW at (860) 972-4353 or Amy.Mueller@hhchealth.org.