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.

Canadian Family Advisory Network requests input for new initiative on child and family inclusion in our health system

Dear All,

This is an invitation to all of you to participate in an initiative to improve the experience of children, youth, and families in the health care system(s) across Canada. It will be launched at the annual workshop of The Canadian Family Advisory Network (CFAN) on Sunday, October 19th in Edmonton, but you can each contribute something valuable even if you can't be there.

The initiative's origins lie with The Canadian Child and Youth Health Coalition, of which CFAN is a relatively new member. (Information about the Coalition can be found at http://www.ccyhc.org/) In its "Strategic Plan for 2008 and Beyond", the Coalition proposed, among other things, to "take a fresh look at the way in which children and their families are included within the ... health care system." Part of the task is to address concerns about "significant variability across institutions" and across and even within provinces and regions. And our Coalition partners saw CFAN as being "centrally engaged in this initiative."

This is an exciting but daunting task, but fortunately our coalition partners, including CAPHC, the Paediatric Chairs, the Surgical Chiefs, and the Mental Health Consortium are eager not only to support the initiative but to become directly involved. Dr. Bob Armstrong, Co-Chair of the Coalition, will be taking part in the Edmonton workshop as will CAPHC representatives. As well, our new collaborators from The Canadian Association of Child Life Leaders are also keen to help advance the initiative. And then there are the Children's and Youth Councils which would also seem to be natural partners.

The initiative will not be limited to considering the experience of children, youth, and families within health care institutions. We know how small--though crucial--a segment of the experience that usually is. But we're going to start with the in-hospital and in-rehab centre experience in part because evidence is--we're assuming--more easily gathered about that part of the experience.

In Edmonton we'll be devoting 75 minutes of our workshop to the initiative. In that time we'll be asking everyone

1. to identify everything that should be on the table in the initiative's first phase. Already we've heard that pain management, sibling support, ready access for patients and families to critical care response teams, easier ways for families to report patient safety concerns, family-to-family support, matters related to "informed consent," and "the weekend experience" should be among the topics addressed. We know there are many more--some of which may be entirely different So if you're going to be in Edmonton, please think of what you'd like to add. And if you're not, please let me or Tamara Krbavac (krbavac AT HHSC.ca) , CFAN's other representative on the Coalition Steering Committee, know what for you is a "don't miss" item.

2. to choose, or to volunteer for, a small working-group to help lead the initiative for at least the first year. The working group will have teleconferences (roughly once a month) and direct the "evidence gathering" that will inform and support the recommendations that emerge. Please give some thought to joining the group.

3. to help define the scope of the initiative. (Should we, for instance, be looking beyond Canada to identify best or leading practices?) and

4. to identify other projects that this initiative should be linked with and existing sources of information that the initiative should tap into.

If you have questions or suggestions, please get in touch with Tamara or me. And please reflect a bit on your experience and then contribute the fruits of that reflections to the initiative, thereby making a difference in the experience of others.

Frank Gavin
Chair, Canadian Family Advisory Network (CFAN)

Contact Frank Gavin at frankgavin AT rogers.com