When Charles Gallagher observed his 18-month-old little girl’s unusual behavior on a family vacation the summer of 2015, he could not have imagined where it would lead.
“She just wasn’t herself. She had become lethargic. She wanted to be held all the time. We knew something was wrong.”
Once they were back home, there were doctor visits, then a trip to Johns Hopkins All Children’s Hospital, and an eventual diagnosis of leukemia that would turn their world upside down.
Their journey through treatment has been filled with highs and lows, and with each new day, some added wisdom and experience on parenting a sick child.
Now, as his family enters what Charles calls the “ninth inning” of their daughter’s treatment, he is giving back. He’s serving on the Family Advisory Council, a group of dedicated parents who meet monthly with a small group of hospital staff and leadership to share their experiences and their advice. The mission is to make things better for patients and families by learning from those who have been down this road, including many who are still on their journey.
“I’m blown away by how mission-driven everybody is here at Johns Hopkins All Children’s,” Gallagher says. “This is already A-plus care. I’m just looking for ways to make it A-plus-plus.”
The Family Advisory Council is looking for new parents to join, even as the structure of the meetings is changing. Starting in September, the Family Advisory agenda will be directed and driven by the families, with more opportunities than ever for parents to speak openly and share their concerns and advice.
Joel Roach is the hospital’s Service Excellence Manager, and senior adviser to the council.
“The most important thing we can do is to really listen to our families. It’s really about sincerity. As long as we stay focused on offering our parents an open forum for feedback as to what’s going well and what’s not, we’ll be successful.”
To date, the council has tackled a range of issues, from fundamentals such as the care and interactions between clinicians and patients, to logistical improvements, such as making signs more clear. This past year, parents’ feedback also led to the creation of a menu with pictures for young patients who can’t read.
Julie Bridge served on the council for more than two years. Her journey with Johns Hopkins All Children’s began with the birth of her triplets, delivered 14 weeks early. Today, the triplets are thriving, and will turn 5 in October.
“I thought it was a great way to help and have an impact on the hospital. It’s an opportunity to get out there and have your voice heard, to help fix things that are wrong and encourage things that are right.”
Not to be outdone by the adults, teenagers participate on a Teen Advisory Council, which is looking to enlist new members. The teens, who have been or continue to be patients at Johns Hopkins All Children’s, impressed Leadership last year by taking on a host of projects, from improving menu items, to making care packages for patients during the holiday season, to helping advise older teens who are transitioning out of the care of the hospital due to their age.
Seventeen-year-old Samantha Lee is the council’s Community Outreach Coordinator.
“If you want to make a change in the hospital, it’s a good way to make a change and to help others. And you have fun and make friends while doing it.”
Both the Family Advisory Council and the Teen Advisory Council meet every third Tuesday from 6:15 to 8 p.m. on the St. Petersburg, Florida, campus. Also new this year, each family will align with one of the hospital’s four institutes or other departments and programs, and will have a chance to meet twice quarterly with the area's leadership, before the monthly Family Advisory meeting.
Find out more, including how to apply to be on the Family Advisory Council or the Teen Council.