Welcome to the Children’s Hospital Boston blog about Family Advocacy Day 2010!

Visiting Capitol Hill is a regular part of my job in the Office of Government Relations and it is most enjoyable when I am accompanied by patient families.  So, I am really looking forward to Family Advocacy Day!

As you may know, Family Advocacy Day is an opportunity for families with children who are patients at Children’s Hospital Boston to visit their own legislators in Washington, DC and tell their stories.  As elected officials make decisions on policies that impact the health care provided to children, these advocacy efforts are critical to ensure that they are well-informed.  No one can illustrate the work we do at Children’s Hospital Boston like our patients and their families.

Children’s needs in the health care system differ from adults.  Fortunately, the majority of children are generally pretty healthy!  Unfortunately, the small percentage of children who do need more than just routine medical care tend to have very complex needs.  As a result, the unique nature of pediatrics is that it is very dependent on specialists and subspecialists.  During Family Advocacy Day this year, we will be work to highlight the importance of access to pediatric specialists.

This is where the families come in.  The children traveling to DC with us this year have been treated by pediatric specialists in the fields of gastroenterology and pulmonology at Children’s Hospital Boston.  Their parents can attest to the difference that access to specialized care has made in their child’s progress.  The children put a real face on the issue – a face that lives and plays in a Congressman’s home state.

We are also traveling with two pediatric specialists, Dr. Jim Mandell, a pediatric urologist (and also our CEO!), Dr. Dennis Rosen, who is the Associate Director of the Sleep Lab at Children’s, and a nurse manager, MaryEllen Green, who works on a floor at Children’s that is dedicated to Complex Care Services.  These pediatric health care providers can attest to the impact public policy can have on the provision of care for children.

When we talk about policy issues that impact access to pediatric specialists, we often focus on the national shortage of these health care providers.  As you can imagine, any shortage of providers can result in longer wait times – which can lead to delayed care, poorer outcomes and increased emergency room use.  There are policy solutions to these problems and our goal is facilitate conversation in Washington, DC about how to address them.

When policy debates arise regarding access to pediatric specialists, we want Members of Congress and staff who met with our families to remember the stories they heard, from their own constituents, and work to represent their needs.

While it is easy to feel cynical about politics, experiences like Family Advocacy Day remind us all that individuals can make a difference.  The families and staff traveling to DC this month are offering their voices and stories with the goal of building a better health care system for children.  I hope that readers will offer support to the families traveling to Washington, DC through comments on this blog.

— Amy DeLong (Federal Government Relations Manager, Children’s Hospital Boston)

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