"Independant Patient Advocacy"
About: Patient Advocates Australia Patient Advocates Australia Sydney 2000
Posted by Grateful Mother (as ),
My first baby developed central sleep apnoea days after they were born. My baby was critically ill and in and out of a neonatal ICU. It became clear that she would need home ventilation (BiPap). I knew nothing about ventilators and on the night she was commenced on this treatment in hospital, I believe the nurse on duty was a novice. My baby screamed in agony and fought the device and my concerns for their safety were dismissed by staff even though they had never worked with this problem before.
I contacted Dorothy from Patient Advocates Australia and I had skilled advocacy and wonderful support from the get go. Dorothy is an ICU nurse and was able to help me understand the ventilator and guided me through the process of intervening at the hospital to achieve a safe outcome. She was always available. I learnt so much from her about how to be assertive, how to insist on collaboration and accountability, how to establish a tight communication chain and how to become my child’s advocate. When my twins developed the same problem, I was so much more confident both with knowledge and with advocacy. I have 3 perfect children and I'll remember well how much my independent patient advocate helped me.