Patiently Advocating: A New Voice for Improving Patient Care

A Brief Introduction
I gave birth to a healthy baby boy in July 2006. But at four months old, the chronic health issues started: asthma, croup, chronic skin rashes and infections, ear infections, and sinus infections. He saw many, many specialists. He had five surgeries by the age of five. It felt as though we saw a medical professional weekly, and never the same one within a month.

We moved home to Toledo just before his fifth birthday, after moving frequently for several years. Amazingly, these chronic health issues improved. Then, just before his sixth birthday, a whole new journey began. It took a full year of testing, new specialists, new therapists, but finally he was given a diagnosis: Autism. More accurately: Pervasive developmental delay, attention deficit hyperactivity disorder and anxiety. I have read that many families are devastated, initially, by a diagnosis of autism. I was relieved. Finally, I understood the why, and what I could do to help him. I became his advocate.

Discovering the Family Advisory Council
It was a year after his diagnosis that I read about the Family Advisory Council (FAC) at ProMedica Toledo Children’s Hospital (TCH). The group consisted of dedicated family members of patients who utilize TCH frequently, who have come together to promote and facilitate Patient and Family-Centered Care. They collaborate with the hospital to improve the patient and family experience. And, they were seeking new people to volunteer on the committee.

“I can do this,” I thought. “I need to do this.”

Many of my son’s physicians were through ProMedica. He frequently used the outpatient services at TCH. We experienced some truly brilliant care at TCH. However, we had just finished an experience which could have been better. I was seeking a way to change that experience. I wanted to use it to bring about change and improvement, so that it meant more. This opportunity could not have been timed better.

I had an amazing first year with the FAC. The members vary greatly in background, and in the services their families utilize at TCH. There is a wealth of information that is shared. Many projects are currently being pursued by the members, and I hope to share some of them with you in the upcoming months.

Stepping Into My New Role
This June, the FAC lost its chairperson, Mary Borucki, a former blogger for ProMedica HealthConnect, due to a family move. It was a huge loss. Someone needed to continue the leadership. A friend encouraged me to consider becoming chair. In her opinion, the fact that my family had both good experiences and experiences that could have been better was an asset. It allowed me to see the need for improvement, and step forward to voice that need. I agreed. I became the chairperson in July, and though I’m still getting acclimated to the group, I’m excited of the progress that’s being made.

If you are also a part of the TCH community, I encourage you to share your experiences and feedback with me as I share updates about FAC. You can learn more or get involved with the group here.

Aurora Dayne is the chairperson of the Family Advisory Council at ProMedica Toledo Children’s Hospital where she works to foster communication and relationships between patients, their families and caregivers.