One more day to SickKids Parent Education Day!

The February 19th parent education day promoted on SickKids homepage content slider.

We have almost 80 registrants so far and there is still time over the next 24 hours to register and learn about supports, develop strategies and meet other parents and staff.

The event is free and includes refreshments and light lunch. We start at 8.45am and end at 2pm and no one will mind if you pop in for a few sessions of interest if you cannot make the full day.    

Margaret Keatings, the staff sponsor of the event, will welcome everyone and hopefully share news on exciting family centered care initiatives underway and in preparation.

Family advisory council member Jody Yielding will then bring you within their family story with Jack in Turning Lemons Into Lemonade. 

A wide range of workshops follow in two series: sibling support, patient safety, family legal health program and school rights; and helping your child cope, dealing with the school system and transitions to adult care.

Then after lunch, two presentations will first ask you to help define child and family service excellence and then consider the importance of care for the caregiver (i.e you).

There will be door prizes, students of therapeutic massage offering neck and back rubs and representatives of committees where parents volunteer to help the hospital will be around to talk about opportunities to participate.  

Here is the full agenda and online registration.

If you can think of someone who might benefit, please forward or give this wings with the share buttons.

SickKids hospital news twitter account @sickkidsnews (started June 2009) publicizes education day.  

Larsen Grace Purvis

In April 2008 I shared a link to Larsen Grace from Tennessee who was like Sasha's Alagile sister in their rare combination of liver and heart defect. I hoped Larsen would live long and defy the odds and each email notification of a new carepage was a special delivery. Her mother Tamara posted on her Carepage details of a life full of love and hope and challenge and travel and family and all kinds of supports. Almost every carepage ended with prayers for children they knew with Alagille syndrome. Her posts on the Alagile Syndrome Alliance bulletin board shared ups and downs and reached out with thoughts and support.

Larsen grew into a beautiful, golden skinned girl who loved her little sister Courtlyn. She rebounded from numerous proceedures but at age 2 she broke a leg and more recently she fell from her bed one night and needed surgery to stem a bleed in her brain. After a catheterization, Larsen's family prayed daily that the tiny collateral arteries to her lungs would expand. As we are learning, the collateral arteries in these children do not grow. At three and a half years of age, Larsen's care team declined further intervention and so did another team. On Dec 31 a carepage update celebrated that a specialist in Cincinnati would stent and balloon some arteries on January 25.

My son Bram was born January 21 and the days flew by. On January 25, Tamara posted that Larsen was in surgery. I know how the moments pass for families during surgery, and this was high risk. A few hours later the update was "Larsen has passed." My heart raced and I felt dizzy.

A few days later Tamara shared what had happened, starting with a quick run through of her life and then the wonderful day pre-surgery at the hotel pool and out on the town. When Tamara told Larsen that morning that the doctor was going to try fix her heart, she said "Ok, that sounds like a good idea." Amazing - at one and a half years and then a diminished 2 years we could never have a conversation like that with Sasha. The surgeon saw a tiny tear but wasn't too worried and then she hemoraged and had a cardiac arrest. The team worked for some time to revive her and the surgeon was shocked and emotional. The family's faith is strong and Larsen is with her God.

Larsen you touched and live on in many hearts and you chose a great family to love and care for you and to love in return. Like Sasha, you were more fragile than we realized. May your memory be a blessing to your family who gave you so much love. My heart goes out to the Purvis and Gremillion families who packed so much life into Larsen's three and a half years.

You can read about Larsen's life at her carepage. You can learn more about research and family supports at the Alagille Syndrome Alliance and their bulletin board which has become the primary virtual support for families of children living with Alagile Syndrome.

Canadian Paediatric Trigger Tool

The just published "Description of the development and validation of the Canadian Paediatric Trigger Tool" is a ground breaking contribution to pediatric patient safety co-written by Dr Anne Matlow, Medical Director of Patient Safety and Infection Prevention and Control at SickKids Hospital and member of the CAPHC Patient Safety Collaborative.

The CPTT is the first valid and reliable TT [trigger tool] for detecting harm in children and youth of all ages hospitalised in acute care. This 35-trigger tool is reliable and robust, and can be used in quality-improvement initiatives and for more rigorous research agendas. Future research should focus on improving the efficiency of the CPTT and investigating the differences between nurse and physician assessments of AEs [adverse events]... Such studies will enhance current efforts to raise the profile of paediatric patient safety issues.

...an AE was defined as an unintended injury or complication that results in disability at the time of discharge, death, prolonged hospital stay or subsequent hospitalisation, and is caused by healthcare management.... ‘Healthcare management’ included the actions of individual hospital staff, as well as the broader systems and care processes, and included acts of omission and commission.

Additional resources:

• Reducing Harm in Paediatric Care: Learning about Adverse Events using a Validated Canadian Paediatric Trigger Tool (Matlow: 2007) 
• Incidence and Types of Adverse Events in Children in Large Community Hospitals (Matlow: 2008)
• Development, Testing, and Findings of a Pediatric-Focused Trigger Tool to Identify Medication-Related Harm in US Children's Hospitals (Takata: 2008) 
• video of trigger tool in use 
• trigger tool resources from the CAPHC Patient Safety Collaborative:
  "We know that we cannot prevent all Adverse Events, but if we eliminate or mitigate the harm from those that are preventable, we will greatly increase the safety of our healthcare delivery.  In order to do so, however, we must first be able to identify these events, a process that has been hampered to date by the lack of an appropriate paediatric tool."
• Adverse Events in the Neonatal Intensive Care Unit: Development, Testing, and Findings of an NICU-Focused Trigger Tool to Identify Harm in North American NICUs (Sharek: 2006)
• Adverse events and comparison of systematic and voluntary reporting from a paediatric intensive care unit (Silas: 2010) 

AbilityOnline invites you to celebrate the launch of their new and improved web portal

Come celebrate Abilities, Possibilities and Families with the Board of Ability Online.

Since 1997 we've had a presence on the world-wide-web and have provided a unique online community to enrich the lives of children and youth with all kinds of disabilities or chronic illnesses. Within this secure and monitored environment our members meet, learn, develop skills, and enjoy the company of others who have faced similar challenges.

However, our aging technology was making the site  difficult to navigate for most and inaccessible for many. Along comes Momentum with a complete site rebuild - a complex and daunting challenge.

When our kids feel good about themselves, they start to imagine their potential and look beyond their disabilities. Now they will be able to do this and more in a state of the art website which will be unveiled by the Lieutenant Governor of Ontario, the Honourable David C. Onley.

The event will be hosted by Colleen Rusholme from Boom 97.3.

Special guest appearances by:

Singing superstar, Justin Hines www.justinhines.com

Rising musical star Maddy Rodriguez  www.maddyrodriguez.com

Please join us:

Date:     February 15, 2011
Time:     3:00 to 4:00 p.m.
Music Room, Hart House, University of Toronto
7 Hart House Circle, Toronto

RSVP: Michelle McClure, mmability@yahoo.ca, 416-650-6207 

Since meeting Michelle McClure in October 2008 I have been a big fan of AbilityOnline, a website for children and parents to connect and get support. Its a resource long advertised on the SickKids website. Two years later and the revamped portal is ready for launch! Congratulations to Michelle and AbilityOnline and a special thanks to Momentum for their massive donation of time and energy and skill. If you cannot make this exciting launch, please check in over the next few weeks and consider signing up to use AbilityOnline.

Bram Solomon Stein-Blumberg is born

Our first son was born at 8am on January 21, 2011 weighing 8 lbs at Mount Sinai Hospital in Toronto, where Sasha, Mia and Eve were also born. Pamela made it look easy and the team worked like clockwork, pushing us along with minimum discussion: we hung out in the family room from 6pm to midnight wondering when she would be induced. A waiting granny who went to camp with our doctor was Mia's supply teacher last week. Small world. She was waiting for a daughter who is a good friend of a close neighbour. Smaller world. Induction at 2am, scary epidural went well at 3am, painless onset of contractions and three big pushes approaching 8am.

This is our last child and first boy and we wonder what we have gotten ourselves into after finding a groove with Mia and Eve. He had his fingers in his mouth in a few minutes and the birth was so quick he wasn't hungry. He seemed very content and happy to latch. The past is everywhere as I walk around, a momentarily open NICU door filled with isolettes, posters for a palliative support study supervised by SickKids NICU nurse Lori Ives-Baine, and a dusty blackboard listing family centred research projects for 2007. The breadth of birth support is truly staggering.

Earlier, we went for dinner on Elm at the Queen and Beaver and the lamb kidney's were a bit rich in retrospect. We walked under the CCCCU windows on the way home but decided not to walk through SickKids as we did while Pam was in labour with Sasha. After we were transferred to a room on the 10th floor, Bran fed and we unwound as a parade of nurses and doctors visited the next bed. As we brought Mia and Eve to visit and our bed turned into a temporary carnival of love, 2 feet away a mom and her twins were all struggling. But we were home within 36 hours and while the difficult bits (eating, sleeping, parenting 2 older sisters) seemed to slip into place over the next 3 days it took almost a week to choose a name. Bram is named in loving memory of Pamela's cousin Brandon Grajycer. 

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.

Family Education Day: Caring for Your Child; Empowering Yourself

SickKids 2011 Family Education Day will be held February 19th (the family day weekend) at the hospital.

Please pass these event details on if you know someone who might be interested.

This education day will be an opportunity for parents/caregivers of children and teens who are patients at SickKids to:

• Network with other parents/caregivers in a relaxed and welcoming atmosphere
• Feel empowered in their role as members of the healthcare team
• Participate in a variety of topics that are relevant and of interest to their families (e.g. sibling support, patient safety, transitioning)
• Collaborate with other parents/caregivers and healthcare providers at SickKids

The event is free and is designed to support families of kids with any sort of health issue and all inpatient and outpatient families are welcome.

The event is designed for parents and there is very limited child care available. Topic wise there is something on offer for all parents or care-givers and several sessions will include staff and parents co-presenting.

The event is coordinated by the Family Centered Care Advisory Council (FCCAC) with input from the Children's Council. FCCAC members will be on hand as well as staff to talk about parent volunteering and other family support services.

You can register online here.

8:45 - 9:15	Registrations, Breakfast and Networking
9:15 - 10:00	Welcome FCCAC, Conference Committee and Mary Jo Haddad
9:30 - 10:00	Turning Lemons into Lemonade: A parent's journey of living with a sick child Jodi Yeilding
10:00 - 11:00	Concurrent Session 1 Support for Siblings Dr. Maru Barrera
10:00 - 11:00	Concurrent Session 2 Families as Partners in Patient Safety Jonathan Blumberg and Rita Damignani
10:00 - 11:00	Concurrent Session 3 Family Legal Health Program and Tangible Supports Lee Ann Chapman, Lawyer, Family Legal Health Program
11:00 - 12:00	Concurrent Session 1 Helping Your Child Cope with Illness and Hospitalization Childlife Service
11:00 - 12:00	Concurrent Session 2 Helping Parents Deal with the School System Speaker TBA
11:00 - 12:00	Concurrent Session 3 Transition from Paediatric to Adult Care Lindsay Yeo, Kariym Joachim and Good to Go staff member Genevieve Kilman BA, CCLS
12:00 - 1:00	Lunch and Networking
1:00 - 1:20	Child and Family Relations: Moving Forward with Service Excellence Marie Pinard and Cindy Bruce-Barrett
1:20 - 2:00PM	Caring for Yourself as a Caregiver Irene Elliott and Janice Mulligan