When I was child, my mother always took me to my annual physicals with Dr. Leary, the only physician that I saw for the first nineteen years of my life. When I came home for the summer from my freshman year of college, my father said that I had to get a summer job. He even secured a job for me, which paid about $10.00 per hour. This was at a time when the minimum wage was only $3.35 per hour. Needless to say, I was very excited. So when I was told that I had to get a physical exam before I could start the job, I was so anxious that I immediately scheduled an appointment on my own and went to the appointment alone without telling my mother anything about it. I wasn’t trying to hide anything from her. I just figured that at nineteen years old I could now take care of this on my own and didn’t need my mother to hold my hand.
At the conclusion of my appointment, the pediatrician’s office manager asked, “Did Mommy give you a check?” in a tone that sounded more like one would use when addressing one of the kids on “Barney and Friends.” I found it a little bemusing that this man was speaking to me like I was five years old, but to some degree I was still “five years old” because I had no idea what to do. In all those years I had been seeing my pediatrician, I did not know that my mother had to actually pay, and I had no real concept of health insurance or how it worked. If I had told my mother about the appointment beforehand, I’m sure she would have given me the insurance card and necessary co-pay; but I didn’t tell her and here I was, totally unprepared. Obviously, all of these details had always been taken care of for me since I was never involved in these discussions. Even when my mother discussed my actual health with my pediatrician, they would usually talk to each other like I wasn’t even in the room.
When I walked out of the office that day something told me that I needed to find a new physician. I didn’t want “Barney” to address me like a little kid anymore. The Dr. Seuss books and wooden “choo-choo” train in the waiting room were also indicators that it was time to transition to a physician that treated adults. Other than knowing that, I knew little else. In retrospect, it’s a little embarrassing, but mostly amusing, how little I knew about the healthcare process and making the transition from pediatric care to adult care.
Unfortunately, for families dealing with hydrocephalus, the transition from pediatric care to adult care is not amusing at all. If you are a teen or younger with hydrocephalus, you may have a challenging journey ahead as you attempt to make the transition to adult care. If you’re a young adult who has recently made or are in the midst of that transition, you probably have some interesting stories to tell.
While it is wonderful that children with hydrocephalus are reaching adulthood, which was not generally the case decades ago, it creates the problem of transitional care. Fortunately, the Theodore W. Batterman Foundation chose to support the Hydrocephalus Association’s Transition Summit which took place on February 18-19, 2017, in Seattle, WA. The major goal of the summit was to raise a call to action by key stakeholders to address the need for transitional care for patients with hydrocephalus by establishing a set of actions and measurable goals that can be reached within 5-10 years.
Over 60 participants, which included world-renowned medical professionals as well as hydrocephalus patients and parents, convened for the two day summit. Via presentations, discussions and breakout groups, the summit attendees addressed both the content and relational aspects of creating a new ecosystem for transitional care in hydrocephalus, measurable outcomes, necessary collaborations and processes for accountability with regards to this complex issue.
Work on the Transition Summit began long before I began my tenure with the Hydrocephalus Association in September 2016. As a minor participant on the Transition Summit committee for only a few months, I can attest to the committee’s hard work and humbly submit that I am in awe of that work which made the summit, in my opinion, a rousing success. Despite my high regard for the aforementioned work, I would be remiss if I did not respectfully assert that now that the summit is over, the real work begins. Actions will be targeted to both systemic change, and development and adoption of best practices, with the overall objective of fostering the creation of effective transitional programs in multiple centers throughout North America. The results of the summit will soon be translated into an action plan which will, over time, alleviate the problem of transitional care.