"Neurology at the hospital"

My child has a rare syndrome, along with this come a number of medical issues. They had an MRI at the beginning of 2019 to help with diagnostics. On the MRI there were lesions in the white matter, consistent with Cerebral Palsy (CP). Our Paediatrician confirmed this and suggested we see the Neurology Team at Perth Children's Hospital (PCH).

My child has also been having episodes of what we think are seizures. The ENT Department also have referred them to the Neurology Department as they said they believe their swallowing issues are neurology related. We went to the appointment to see the Neurologist, who made the comment that as my child already has a diagnosis there would be no need to diagnose them with CP and not to worry about it!

This instantly concerned myself and my spouse. The Neurologist's comment was also that as we didn’t need funding, there was no point in them seeing our child again and looking into the MRI further, and they would see our child in 12 months! I was not convinced this was ok.

I discussed this with our local Paediatrician who agreed that the Neurologist was not only very unprofessional but that what they had said was completely wrong. Our Paediatrician was going to contact PCH for a second opinion and to arrange an EEG. 

The following week the Neurologist called and said they had spoken to the MRI team and they had confirmed there was lesions in the white matter, and that because my child didn’t have the ‘spastic muscles’ and because they already had a diagnosis of the syndrome that they wouldn’t do anything else! This still didn’t sound right to us.

Our Paediatrician organised an EEG, which happened recently, and we were told whilst our child wasn’t very compliant that they had got enough of a reading to use. 

I then received a letter from PCH advising my child had another EEG appointment booked for the following month. When I called to ask about it, I was told that it had been booked by the Neurologist who wanted to see our child that day also! 

I questioned this and asked about the second opinion that we had previously asked for and were waiting for. We do not trust the original Neurologist as they have showed no care or compassion towards our child and what is happening. When I asked the Receptionist about the second opinion (as this is our right) I was told we would have to wait 12 months to be seen by another doctor! 

12 months seems hardly fair when it was the original Neurologist's slack and unprofessional attitude that has lead us to this situation. I’ve had phone call after phone call to try and resolve this issue and I’m just going around in circles. I would like to discuss it with hospital management! This isn’t the first time staff we have dealt with at PCH have messed us around and stuffed up and I getting sick of it. It’s not good enough and I am just about ready to take this further and discuss with my Member of Parliament. 

My child also has a rare eye condition - they are supposed to be seen for regular eye exams. The last one was over a year ago and when I called to follow up on their referral and appointment I was told they would be waiting at least another 18 months, unless our Paediatrician wrote again to say it was urgent - which they did again and we still do not have an appointment! In the meantime my child's eye condition has deteriorated and it is obvious to us that they are now seeing less. Again - not good enough. 

We understand that appointments are managed on a triage system, however the waits for urgent appointments have been ridiculous, and our child's issues get worse which in the long term will put further pressure on the health system. We know early intervention is key but it would seem that’s not a priority for the staff we are dealing with at PCH!