"Issues with coordination of care"

I have been attending PCH since my child, who is now a few months old, was diagnosed with a rare disorder at about 20 weeks. My baby was allocated to an Early Intervention Team as it was identified that they will need various therapies and treatments, and the sooner they receive treatment the better their outcomes would be.

My baby was scheduled to have surgery before Christmas as well as another unrelated surgery in a few months. The first surgery was deemed too urgent to wait to be aligned with a second surgery (to reduce the need for multiple anaesthetics), however, the clinic, where my baby was requiring surgery before Christmas, has not contacted me and after calling their reception I was advised my baby is just on a waitlist with no surgery or appointments scheduled.

I am very frustrated with the lack of communication. I have no one I can call or email to find out what is happening, which means when issues arise, or if I feel like something is getting missed, my only option is to wait until next appointment to raise concerns.

I left a message with clinic reception  ...to find out recently that that doctor no longer works there and the message I left didn't go through to anyone.

I understand that PCH is a busy hospital however the doctors have stressed the importance of early intervention in preventing issues further on in my child's life. I am concerned they are being left behind by what I feel is the poor communication and lack of coordinated care. 

This is compounding the stress our family is already dealing with and we are finding this is impacting on the lives of my partner and my other children as well as our baby.

To discover that my child has this condition and to have such difficulties accessing someone with whom to discuss their ongoing challenges when they arise is very stressful.