By: Cindy Murphy - Parent Partner, Boston Children’s Hospital
Why this CF Mama Bear became a Parent Partner......
I am a self-proclaimed CF mama bear. What this means it that like most CF parents and care givers, I will do whatever it takes to help my daughter Amanda live a long and healthy life. For example, when she was born 14 years ago, I was unfamiliar with the Boston area and avoided driving into the city having grown up in a small town in Connecticut. When I needed to take her to frequent appointments in Boston, I didn’t hesitate (even with the Boston cab drivers nudging me along as they sometimes do!). If it meant driving into Boston to get Amanda to a doctor’s appointment, there was no stopping me.
Being a CF mama bear means doing everything in my power to help her, from meeting with school staff to educate and partner with them in providing her daily meds and strategizing how to survive flu season, to avoiding 2nd hand smoke at all costs. Light up a cigarette near her and watch out, my bear claws come out (as politely as possible)!
When asked if I would be interested in joining the CFLN team at Boston Children’s Hospital last year, I gladly accepted and was excited to have the opportunity to participate. While heading in to attend my first meeting, I started to wonder what I would be able to contribute to the team. Sure, I have years of experience caring for my daughter, but I have zero experience in the medical field. Will I be able to contribute and bring suggestions to this group of medical professionals? My team quickly put me at ease and welcomed my input and suggestions.
Fast forward to the Spring CFLN conference in Minnesota in April. If you had told me when I first joined the team that I would be representing my care center and explaining our team’s poster on pre-visit planning to medical professionals, I would not have believed it.
So what have I learned over the year as a parent partner? There is a great deal of work being done at my care center and centers throughout the network. It is exciting to collaborate and share ideas through the Patient and Family Partner calls, network webinars, CF Learning Exchange and Community Conferences. My care team and the entire CFLN network is dedicated to identifying and implementing process improvements, increasing “co-production” and improving the patient and family experience. We all know that our care teams are essential in the life of a CFer, so having a strong and effective partnership is critical.
It has been a fantastic experience and I am thankful for this network and the work being done to help Amanda and others with CF and am excited at the continued work and projects in process.