"Difficulty contacting depts and/or doctors"

My young child has been a patient of PMH since they were a baby with a fairly rare neurological condition. Part of this condition is seizures that need medication to control and review on a regular basis. The development and future for my child is unknown as this condition affects everyone differently from very mild to severe.

I have had cause to be at the hospital many, many times over the past years for regular MRI's, EEG's, follow ups and other related appointments.

I have been very happy with the actual care that the doctors and nurses provide (only 1 negative experience with 1 nurse) but the administration of the hospital is nothing short of atrocious. I now go straight to the Customer Liaison ladies (who are absolute legends) to get anything done otherwise I believe it is a complete waste of time.

I could go on for a long time about different bad experiences but my main problem at this time is that previously there was a Epileptic/Neuro Liaison Nurse who left the hospital last year. We were waiting to be advised of a contact replacement and as it is now months into the year, even the Customer Liaison ladies could not find out who the replacement is.

We now have no-one to contact to ask neurological questions about my child and haven't for some time. So there is no way to get information about changes in my child's condition to the doctor that treats my child and no way of clarifying issues that relate to their ongoing care. When I have rung main reception to ask for Neurology, the phone either rings out before anyone answers, or rings out when they put me through to the Neurology Dept. When you leave a message but don't receive a return phone call or when you finally get to speak to a doctor they are on the ward, too busy and have no knowledge of my child at all.

I feel it is imperative to have a Liaison Nurse who parents can contact and that person then takes your concerns/queries direct to the doctor responsible for your child. This is what used to happen - why hasn't the hospital bothered to replace the Neuro/Epileptic Liaison and if, by some chance, you have then why haven't you let the patients families know of this?