Sasha Bella Stein Blumberg Forever 2143124

Celebrating Sasha and supporting SickKids patient and family centred interprofessional care, staff and family partnership, patient safety, palliative care and Alagille Syndrome. Thanks to family for love and visits, laid back Dr Michael Peer, Dr Jennifer Russell's tireless coordination of LFHC, GI, CCCU, Gen Surg and IGT, all the staff at Hospital for Sick Children and Max and Beatrice Wolfe Centre and final homebound team Stephen Jenkinson, Dr Russell Goldman and TCCAC.

Website survey on Patient Representative includes Declaration of Values

The latest SickKids website pop-up survey focuses on visitor knowledge of and experience with The Patient Representative who helps patients and families navigate the hospital and privately deal with grievances. Slide 6 however starts with questions about customer service experiences as Ontario hospitals who do not have one are required to complete a user Declaration of Values (DOV) by June 8 2011. As described in 1.2 of the "Guidance Document for Declaration of Values ECFAA requirement":

"The Excellent Care for All Act (ECFAA) requires all hospitals to have a publicly available patient declaration of values produced after consultation with the public."

The role of the representative is very important in navigating families to resources and addressing grievances. Some parents fear that family and staff disagreement may impact their child's care. Here is how the website describes the Patient Representative ambit of work:

Respect and Support

At SickKids, we understand that a family feels a lot of stress when their child is injured or ill. We will do our best to help you through the process in a way which is respectful of you and of the hospital staff. Families sometimes worry that they will make things worse for their child or for themselves, if they express that they are concerned or dissatisfied with any aspect of care or service, which they are receiving. We understand these fears. Supporting and helping you is what we are here to do. The hospital offers this service because responding to families’ concerns is an important part of family-centred care.

The Patient Rep

* Provides a private place where patients and their families can confidentially discuss their experiences at SickKids.
* Can work with you to address concerns.
* Can help you find the information or assistance you need.
* Can help families and staff communicate more effectively with each other.
* Observes trends and makes recommendations for positive change.
* Passes on your compliments and feedback to hospital staff.
* We will tell you when we cannot do what you are asking.

Here for You

The Patient Representative Service is here to act in the best interests of the patient.

We are here to respond to your family’s needs or concerns.

While the words "patient advocate" or "advocasy" do not appear, the patient rep is the closest SickKids has to a family advocate. In our case, Sasha's mom was upset when a medical fellow joked during the consent discussion for a proceedure and she asked if the doctor could be moved off Sasha's team. This occurred with no fuss and continued for most of the remainder of the stay except when we moved up to his floor and this fellow did a quick consultation on Sasha's arrival and again appeared at a final family meeting to plan Sasha's return home.

Here are the six survey slides which elicit feedback on the Patient Representative and the Declaration of Values.