When our daughter, Taryn, was born in 2005, we knew there were some medical issues we would face, but we had no idea that over the last decade, her medical picture would become so complex and unique.
By the time Taryn was 6, we regularly worked with 12 specialists, a team of therapists through our community services, and a special education team. It became very apparent that the responsibility of coordinating all of this care was ours.
We learned a lot over the years and wanted to share these caregiver tips in the hopes they will help others.
Tip 1: Take charge to coordinate your loved one’s care
We had to become the CEO of our daughter’s care to ensure it ran efficiently and that we could maintain a good balance for her. That was something we hadn’t realized would take so much time and effort to do. Like a lot of people, we thought those in the healthcare system shouldered this burden, and were surprised to realize how little is actually coordinated.
Tip 2: Use technology to make care coordination easier
We found our biggest challenge as caregivers was communication. Whether trying to connect specialists before a major surgery, working with insurance on a pre-authorization, or submitting the appropriate documentation for services, there is little fluid communication in healthcare.
Keeping all of our daughter’s paper records in big binders was too challenging. We now use the CareSync application to electronically find and keep all of those records in one place.
We would highly recommend caregivers take a similar approach. When you regularly see multiple doctors and specialists, this is the only way to ensure you and they have a complete picture of your child’s medical history. It helps get the right documents to the right people at the right time.
Tip 3: Use the records to facilitate conversations with everyone on the medical team
Having our daughter’s records gives us the opportunity to have proactive, informed conversations with all of her doctors and specialists. We’ve recently alleviated redundant lab tests, for example, just by being able to find recent lab reports while in another doctor’s office.
Having this knowledge at our fingertips has allowed us to be more empowered parents for Taryn, and really has helped to forge a great working relationship with her many providers.
In addition, we’ve found this information extremely important when we had to interact with providers who were not familiar with her care, such as emergency room doctors. Having the actual medical notes from her team handy lends a lot of credibility to what we are saying when we discuss Taryn’s rare/complex conditions and are advocating for the right way to approach her care.