PFCC - Newsletter
You can learn about Patient and Family Centred Care activities at Alberta Children's Hospital by reading our monthly e-newsletter - Together We're Better. This newsletter will give you insight into Family Centred Care Initiatives, profile our Family Centred Care champions, and keep you up to date on upcoming education opportunities. Archived copies are available on the FCRC website.
To receive the newsletter via email, please send your email address to email@example.com.
Welcome to the February edition of Together We're Better.
Creating a way for Family Advisors to "meet" across the Province, one Webinar at a time!
The first AHS Patient Advisor Webinar will take place on Monday, February 29 from 5:30 - 6:30 PM. It will include Advisors from the Calgary Zone and the South Zone. Everyone is welcome to attend!! Contact Liz Mackay to register (see sidebar).
The Webinar will include a brief introduction of two experienced Advisors followed by a Q&A "chat room" and voice participation.
Featured on the Webinar will be experienced Advisors Rebecca and Sahra who will share how their roles make a difference in AHS.
This Patient Advisor Networking Opportunity is a direct result of the 2014 "Planting Seeds of Partnership" Conference where Advisors from across Alberta said they wanted improved communication between all Advisors working throughout Alberta Health Services. This first session will test functionality to be certain that future sessions are available to a wider audience.
Rare Disease Day
February 29, 2016, is International Rare Disease Day and this year's theme is the Patient Voice which recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers.
Here at the Alberta Children's Hospital, the day provides an opportunity to raise awareness and the role of our Genetic Services in supporting patients and families with Rare Diseases. Join us at the cafeteria for a "You Need Unique Cookies" bake sale on February 29! All proceeds will go to the Rare Disease Foundation.
Network for Parents with Rare Diseases
There is a network for families who have children with rare diseases! In collaboration with the ACH Genetics Clinic and the Rare Disease Foundation, this network hosts regular gatherings at the Alberta Children's Hospital. The next meeting is on February 25 from 7:00 - 9:00 PM, conference room 2, 4th floor. For more information visit the Calgary Parent 2 Parent Network Meeting event page.
Meet Carmen ...
Carmen was born with rare malformations, where there are fewer then 80 cases like hers reported worldwide. She was diagnosed with Central Core Disease (CCD) at seven months old after having her congenital lumbar hernias repaired. The odds of CCD are six in 100,000 live births!
Carmen had her first surgery at the ACH when she was seven months old. From the complications of that surgery, she and her family spent the next three weeks in the PICU and two weeks following that on Unit 2. She later had another surgery.
During Carmen's first surgery a muscle biopsy was performed to help diagnose Carmen's condition. Within two weeks, Carmen's family were informed by six doctors that she had Central Core Disease.
Since her diagnosis, Carmen's family continue to learn about her all the time. They are so grateful to all the doctors and nurses at ACH -- if it wasn't for their first class training, care and attention, Carmen would not be here today.
The NEW Family Advisory Council
Our new Family Advisory Council is comprised of a diverse set of parents with different child health and life experiences. Together they have experience throughout ACH - inpatient, multiple clinics, surgery, ED, Rotary Flames House, and Child Development Services. Their children range in age from babies to young adults who have transitioned into the adult medical system. Some of our members started their journey in other countries and will help us understand the immigrant experience with the healthcare system.
In our introductions at our first meeting on January 19th, a common theme of wanting to give back to the hospital emerged. There were quite a few tears shed as well; tears of gratitude for the role that the Hospital has played or is playing in supporting their child and sometimes children. The tears also reflected the inherent challenges in trying to protect our loved ones.
Although it was only the first meeting, we are confident that this is going to be an amazing group of family members who will be able to contribute constructively and meaningfully on any consultation exercise that is brought to them.
To arrange a consultation with the Family Advisory Council please send us an email
In This Issue1st AHS Advisor Webinar
Feb 29 Rare Disease Day
Rare Disease Feature Story
Family Advisory Council Update
Upcoming Quality Webinars
Quality and Safety Symposium
FAC Members Needed
You are invited to the 1st AHS Patient Advisor Webinar!
Join Patient and Family Advisors from the Calgary Zone and South Zone and listen to how two experienced Advisors have made a difference in AHS. There will be an opportunity to engage with others and join a live Q&A period.
Monday, February 29
5:30 - 6:30 PM
Please RSVP by February 25 to Liz.Mackay@ahs.ca
Webinar instructions will be forwarded the morning of the webinar.
Quality and Healthcare Improvement Webinars
"My Story: From KCL to OK"
Noon - 1:00 PM
Advisors please register by emailing firstname.lastname@example.org
Internal Staff can register via My Learning Link and search for QHI
ACH / ACHRI Quality and Safety Symposium
February 24, 2016
8:00 AM - 2:30 PM
Telehealth sites available
During the morning session that is open to all, Dr. Rita Mangione-Smith and Dr. Stephen Muething will be discussing, "Measuring and Improving Clinical Effectiveness: Challenges and Opportunities" and "Can We Eliminate Serious Harm Faster by Working Together? The SPS Experience".
The afternoon session (Noon - 1:00 PM) is also open to all and the topic is, "High Reliability Culture: Unleashing the Power of the Front Line to Eliminate Harm".
We're still looking for Family Advisory Council Members!
We are seeking parents and family members of children who are currently accessing services at the Alberta Children's Hospital to join the Council!!
Family members, please email us if you are interested.