Our local children’s hospital has a family advisory council that meets monthly and I’ve been a member of this council for a little over a year. It’s comprised of hospital staff such as nurses, child life specialists, social workers, and various management. The rest of the members of the council represent families that have children who are what we call “frequent flyers” at our hospital. The majority of us are dealing with several different clinics and therapies throughout the hospital. Our experiences really run the gamut of what the hospital has to offer and though we’ve all had difficulties that we’ve shared; we are not there necessarily to vent about past experiences, but instead to help improve the quality of care for all children.
Last week our group was visited by nursing staff from the emergency department who were very interested in our input on their improvement project. They asked us a variety of questions that sparked over an hour of really interesting conversation and shared experiences. As I looked around the room and listened to the other parents in our group, it struck me that what we are going through with our children in that hospital setting matters not only to us, but to the caregivers and management team as well. In the year that I’ve been a part of this council, I’ve seen a question that I asked a customer service manager turn into a multi-disciplined committee set out to do mandatory training for all customer service reps hospital wide. I’ve been witness to the seriousness with which our questions and observations are taken. I can’t help but be completely amazed by it! This just hasn’t been the standard in any other business model that I’ve ever encountered.
Sometimes I think about the parents I’ve met in this group as well as my own situation parenting a child with special needs, and I wonder just how we’re all so willing and able to volunteer our time for months on end to this council. I wonder what motivates us to take that much needed time and go sit in a 2-hour meeting once a month and volunteer to be on improvement teams. I can’t speak for anyone else, but for me at least one of the most powerful things to come out of this past year has been the recognition that I’m being heard. People are asking the right questions, they are listening, and they want to provide the most family centered care in their setting as possible. And because of this, I’ve been able to take some particularly painful and awkward moments in that hospital and turn them around for myself, my child, and for other kids who will follow in our footsteps.