Patient and Family Advisory Council

Deb has had diabetes for more than 35 years. Her kidneys failed in 2013 and she received a kidney transplant in 2015. Deb wants to talk about chronic kidney disease. More importantly, she wants people to listen to what she and other CKD patients have to say. She wants her healthcare providers to understand how surprised she was when her kidneys suddenly failed as the result of diabetes-related complications and how frustrated she was at having to crash start hemodialysis instead of being able to go straight to peritoneal dialysis. Deb wishes she knew earlier about the complications of diabetes. For Deb, her volunteer work, including participating in the Patient and Family Advisory Committee and speaking to community groups about organ donation, has been tremendously empowering. “It is very healing to speak and have people hear what I have to say.”

Cathy was officially diagnosed with Polycystic Kidneys (PKD) in the early 90’s and has been attending the Kidney Clinic since that time.  She appreciates the support received from the doctors, nurses and staff over the years.  In 2014 her health deteriorated to the point where it was recommended that she look at the possibility of dialysis.  After having discussed her situation with staff who were most helpful about the decisions she would have to make, she chose Peritoneal Dialysis.  She has been on dialysis for two years and now feeling the benefits.  She feels fortunate with the wonderful assistance through the PD Clinic and the nurses from the home community support.  Thank goodness there are different options to choose for each individual case. She wants to be able to help others with the change that occurs in their lives which affected her on many different levels at the beginning.  She feels by joining The Renal Patient Advisory Council, this is one way to help.

"I joined PFAC because my dad is a home PD patient. I wanted to get involved so that I can help patients and caregivers struggle less. Dialysis is nothing short of life changing- it changed my life forever- and I’m not even on dialysis. My dad developed CKD from a pneumonia that led to sepsis. He was in kidney failure- and thankfully he survived- but he now has permanent kidney damage. Both of us did not fully understand what this meant at the time. He lived with chronic kidney disease for 12 years before hitting end stage and going on dialysis. Kidneys are a vital organ- and I want to bring awareness and support to kidney disease."

Terri Chanda, Director of the Renal Program, and a Canadian certified Nephrology Nurse, has been working within the outpatient renal health care field for over 25 years.   She has supported care in clinics for patients in the Multi-Care Kidney Clinic, receiving incentre hemodialysis, and training patients to independently perform home hemodialysis.  Her subsequent leadership journey has been driven by a desire to support ongoing opportunities to enhance patient-centred care at a broader level.  The dedication of this council has been inspirational and Terri is honored to support and engage in this ongoing important work.

Ashley is a Registered Practical nurse working within the hemodialysis unit at University Hospital. Ashley has worked in various areas of the pre-dialysis clinics over the years, providing her with wholistic understanding of LHSCs Renal program. Prior to joining the renal team, Ashley provided bedside inpatient care to general medicine patients at the Victoria Hospital campus. Throughout her career as a nurse, she has always focused her practice on the patient experience, strongly believing in patient centered care. She has been fortunate to have been involved with patients at many different stages of Chronic Kidney Disease, and has had the privilege of witnessing a variety of patient journeys. As the Renal PFAC Facilitator, Ashley hopes to gain greater insights from patients and families about the care they receive and plan ways to help improve the day-to-day care of kidney patients. 

• Institute for Patient & Family Centered Care (http://www.ipfcc.org/)
• Healthcare Excellence Canada (https://www.healthcareexcellence.ca/en/)