Stories about: patient advocacy

The Importance of Patient Advocacy and Family Care

By Kerry Sheeran, author of The Marathon, a novel based on the true, emotional journey of a mother and father forced to face their daughter’s life-threatening medical crisis. 

KerrySheeran_1Having held my daughter Emma’s hand through eight major surgeries, I consider myself well-versed in what it means to be a patient advocate. All parents are advocates for their children to a degree. From trying to feed them the right foods to connecting with their teachers, helping kids find their way in the world requires a lot of guidance and support from mom and dad.

But when your child has a medical crisis, advocacy takes on a whole new meaning. You become the “voice” of the sick child, speaking for them, through your own lips. Patient advocacy isn’t something that’s necessarily innate—it’s a skill that is developed over time. My husband and I learned this first-hand (with the help of a handful of Neonatal Intensive Care Unit (NICU) nurses at Boston Children’s Hospital.)

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MA legislators ban the 'R-word' from state laws

By Brian Skotko, MD, MPP, a specialist in Children’s Hospital Boston’s Down Syndrome Program

Brian Skotko, MD, MPP
Brian Skotko, MD, MPP

Let’s applaud together. After decades of advocacy, two words are now banished from our state laws. Last week, Governor Deval Patrick signed legislation that effectively replaced every use of the words “mental retardation” with “intellectual disabilities or disability” in all Massachusetts’s laws. This comes nearly one year after the Department of Mental Retardation was renamed the Department of Developmental Services.

So, what’s the big deal? For years, our society has turned what was once a simple medical term into an epithet of ridicule and bigotry.

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