Darcy Daniels has advice for “Impatient, Empowered” Brave Fragile Warriors

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15493566_678759235617824_8143007157504584506_oDarcy Daniels, mother of 2016 Patients’ View Impact Award Winner Wendy Wooden, took moments of reflection to digest and blog about her experience attending the PVI Impact Awards, a day she described as powerful, overwhelming, and thought-provoking. So what was it like having the attention of over 300 healthcare heavyweights and innovators including The Leapfrog Group, National Board of Medical Examiners, e-Patient Dave, and the heads of our nation’s best hospitals?

Darcy describes her experience in her Brave Fragile Warriors blog: Impatient, Empowered

“Wendy was given an award in front of representatives of the best hospitals for quality and safety in the nation.  Think on that for a second.  If you could tell three hundred people who have the power to change the day-to-day  operations of a hospital, if you had their undivided attention, what would you say to them?

Here’s what struck me about the day.  Everyone in the room was trying to make healthcare better.  Everyone was worried about the cost, the consistency, and the safety of healthcare.  But most of the people were looking at it from the institutional side of it, the bean-counting side, if you will. What struck me about the other patients and parents, though, was that they were both empowered and impatient.  They were there because they were creating change.  Wendy and I were there because we wanted change too… I think, though, that the amount of time our children spend in the hospitals make us as parents want to make the entire medical experience better.”

Darcy and Wendy had answered that burning need to improve medical experiences for other children by teaming with Payette to create “You Are Here: Wendy’s Welcome to the ED”, an animated video for Massachusetts General Hospital for Children. But now what? If hospitals across the country created similar videos for children and adults, that would be a great stride in alleviating fear and illuminating hospital procedure for patients visiting the emergency room…but who do you share your thoughts and needs with in the hospital setting itself?

This is where Darcy gives some advice on leveraging a resource we may not be familiar with:

“I came to this idea of the Patient and Family Advisory Council.  It is a council at hospitals that really bridges the divide between patients (or families) and providers.  Let’s say a family has an experience at a hospital and they know a way that it can be improved.  For example, a family notices that there are no pediatric wheelchairs.  Where can they go to get them ordered?  The Family Advisory Council.  A family notices that the pain medication that was prescribed in the Emergency Department doesn’t transfer up in the orders when they reach the floor.  Who can they tell?  How do they create the change?  The Family Advisory Council can point them in the right direction.

When Wendy and I wrote the story for the Emergency Department Cartoon, I brought it to the Family Advisory Council to help me figure out what to do with it.  The co-Chair of the FAC, Sandy Clancy, helped me to create a committee of people who needed to see it to approve the content, including doctors, nurses, social workers, child-life specialists, psychologists, you name it.  There would have been no way for me to know whom to contact or how to do it.

Likewise, the Family Advisory Council is a resource for the hospital as well.  Different departments come to us for advice about any variety of things.  New blueprints for new departments are brought to the FAC to see if they have any suggestions.  FAC members review and edit information that is given to the public. Parents speak to residents on their first day in their new job about the importance of bedside rounding.  We even sponsor a Grand Rounds every year about family centered care.

If you want to be a part of a Family Advisory Council, contact your hospital and see if they have one.  Usually there’s an application process.  If your hospital doesn’t have one, consider starting one.  The Institute for Patient and Family Centered Care has created a whole series on how to start an FAC in your area”

So what did Darcy say to her captive healthcare industry audience?

I said, since we all arrived by airplane and every airplane in America has a safety introduction before they take off, everything from fastening your seatbelt to what to do in the event of a water landing, why don’t we have introductions to every Emergency Department in America, when people are sick and scared and hurt? Though it may not change anything, hopefully it gave people something to think about on their flight home.”

And with that, Darcy and Wendy continue to raise their patient voice! Read her beautifully written reflection in full on her Brave Fragile Warriors blog.

The Patient View Impact Award Ceremony is a powerful annual gathering where patients and patient advocates come together to share stories, information, and acknowledge an incredible group of individuals committed to creating change and ensuring that the patient voice is heard. Their stories are inspiring. They have experienced struggles, yet have turned those challenges into motivation to better the patient experience for others. Join the voices of patients taking charge of their health and healthcare! Share your experience as a patient or caregiver at GoPVI.org. Every experience, big and small, together makes a collective change. 


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