If your child or loved one has received care from the Barrow Neurological Institute (BNI) at Phoenix Children’s, consider joining our newest Patient and Family Advisory Council (PFAC), the Neuroscience PFAC.
The Neuro PFAC meets regularly to identify ways to improve care and services at the institute. The group includes BNI leadership and staff, as well as adult patients and families.
The group’s overall goals are to:
- Provide a vital link between BNI and the community
- Participate in the development of quality, safety and outcome initiatives to improve the delivery of healthcare
- Drive cultural change
- Provide a safe venue for patients and families to provide feedback on delivery of services and to offer input into program development
- Develop strategies to strengthen communication and collaboration between families and their healthcare providers
An Open Letter From Brittany Miller Our First Neuro PFAC Chair
“Phoenix Children’s is a special place of healing and hope for our family. When our little daughter Brooke was diagnosed with Aicardi Syndrome, Cerebral Palsy, and severe Epilepsy over a decade ago, we knew that life would never be the same. Hearing that your child has an essentially terminal diagnosis and the grief and shock that comes, well I would never wish it on any parent. At the time, I honestly wondered how I would ever be happy and how would our family cope? However, over the years we learned to do the hard things.
However, over the years we learned to do the hard things. With the help of an incredible medical team we learned new medical terminology, how to navigate her care, administering rescue meds and oxygen, how to change a feeding tube... the list of new skills medically complex parents learn is endless. We also learned to be brave, have hope and find joy amidst the hardships Brookie was facing. I learned how to be a strong advocate for my child. Our family grew and became resilient together and while much of her life has been spent at Phoenix Children’s whether inpatient or at clinic visits, there has been immense healing.
Much of Brookie’s medical concerns relate to her epilepsy. Barrow Neurological Institute at Phoenix Children’s has become our second home. With the help of her beloved epileptologist, we are able to make choices and decisions regarding Brooke’s care and she has thrived. I am so thankful Brooke has had the same devoted neurologist for almost 11 years! Developmental Pediatrics has been there, especially in the beginning when all of the global delays and missed milestones seemed too hard for me to bear. Our physician gave us hope, helped me focus on the CANS rather than the CANNOTS and our little miracle girl grew and developed at her own pace, her own way. Neurosurgery was here for us when she needed a vagus nerve stimulator surgically placed to help control her epilepsy. While she still has daily seizures, this device has significantly reduced the 911 calls and hospitalizations that occurred regularly. I am so grateful our surgeon here is nationally renowned for this procedure, we knew Brooke was in good hands and felt such peace of mind on this decision. As we have walked this path with her, neurology especially has been a tremendous source of support for our family. I am truly grateful for this medical team and honestly our daughter is alive today because of the care she has received over the years. Brookie is beating the odds for her rare syndrome and we know we did not get here alone. I feel blessed in knowing that only 30 minutes away from home, we have a nationally ranked hospital with talented physicians, nurses, specialists and staff who truly have a passion for patient and family centered care and improving the lives our children with disabilities and medical issues in our state.
Serving on advisory councils for many years, I have worked alongside the Phoenix Children's team and seen firsthand the passion of the medical physicians that care for our children. It is inspiring and as a mother, has provided a fulfilling way for me to use my medical mom advocacy skills to benefit others. Admittedly, I have been anxiously waiting for years for Neurosciences to join the Patient and Family Advisory Councils and my heart is very full to serve on behalf of Barrow Neurological Institute families as we launch this council. I know that together we can create achievable goals and produce positive outcomes and relationships for neurosciences, all the while helping our neuro families have an even better patient and family experience. Knowing that this team values our input as parents and wants to initiate change for the better is hopeful and inspiring. I am thrilled to be even a small part of it, serving alongside the caring staff, talented doctors and incredibly strong parents… is an honor. I personally know how much this means for families and cannot wait to see what we accomplish together. Here we go!”