Welcoming Families Far From Home
Have you ever had trouble scheduling a doctor's visit on the day and time you want it? Imagine the difficulty of trying to make appointments to see three busy specialists in one or two days, plus fit in time for radiology and lab tests, other consultations or physical therapy — not to mention lunch breaks.
Then add in the challenge of doing all this long distance.
For families who travel far from home for complex medical care, making arrangements for the visit can be daunting. The new, family-centered Clinical Concierge, Guest Services and Interpreter Services programs at Cincinnati Children's Hospital Medical Center ease the burden.
Unprecedented Service, a Warm, Welcoming Touch
Our Clinical Concierge nurses do the legwork needed to schedule multiple appointments. They work with divisions across the medical center to create an itinerary that respects the family's preferences and makes the most efficient, productive use of the family's time.
Once the itinerary is set, the concierge notifies Guest Services of the schedule. A Guest Services representative contacts the family to offer help arranging transportation and affordable lodging. If the family's primary language is not English, the concierge also notifies Interpreter Services, which provides a medical interpreter during the hospital visit. And when the family arrives at the hospital on the day of the visit, a Guest Services representative is there to greet them, give a small welcome gift to the child and escort the family to their first appointment.
Quality Care, Quality Experiences
One of the exceptional programs at Cincinnati Children's that brings families from across the country is the Neuromuscular Comprehensive Care Center, the nation's premier center for treatment of Duchenne muscular dystrophy.
Kim and Joseph Brown travel from New Jersey with their two boys, Joseph, 5, and Jacob, 2. Angela and Drew Malone bring their 5-year-old son, Adam, from Mississippi. Other families come from as far as Florida, Vermont, Massachusetts, Texas, California and Montana, and from Romania and Venezuela.
At Cincinnati Children's they find an unusual, interdisciplinary approach, an emphasis on aggressive preventive care and outstanding support for the family.
Helping Children Survive and Thrive
Pediatric neurologist Brenda Wong, MD, began offering a clinic for children with Duchenne muscular dystrophy when she joined Cincinnati Children's in 1999.
Dr. Wong quickly became frustrated with the care she was able to provide. "I felt we were offering very fragmented care," she says. "You need coordinated care. Kids come to neurology clinic because they're having trouble walking. But they die from heart disease and lung disease. No clinic in the country was providing heart care. We were unable to take proactive, preventive care."
She began recruiting colleagues from other medical specialties to join her in creating a truly interdisciplinary team that would emphasize prevention rather than crisis management. Today, Duchenne MD patients at Cincinnati Children's see heart and lung specialists and physical therapists as part of their routine care. Specialists from a wide range of disciplines are available as needed, and the whole team meets monthly to assure a coordinated effort. This innovative approach is helping children survive and thrive.
"It's inspirational for me to work for a hospital that provided the resources for this program to develop," says pediatric cardiologist Linda Cripe, MD. "Traditionally, by the time children with Duchenne muscular dystrophy were referred to a cardiologist, they had profound heart disease. But here, care begins at diagnosis. By intervening at an earlier age, we hope to slow the progression of heart disease and change the natural history of the disease process."
Science has not yet have found a cure for Duchenne muscular dystrophy, Dr. Wong and Dr. Cripe acknowledge, but in the meantime they are determined to improve the quality of care and patients' quality of life. The care they're providing is winning recognition and attracting patients from around the country. Our family-centered services help make it easier for these families to travel so far from home for care.
"Everyone is genuinely kind," Angela Malone says. "You can tell that they really care, and they gave me hope, not false hope, but hope. We have not found that elsewhere. That's why we come so far." The Clinical Concierge and Guest Services programs are "truly a testimony to patient commitment," Drew Malone adds. "Thank you for putting patients first."
Neuromuscular Comprehensive Care Team:
