"Continuity of care from the children's hospital to the adult system"

My child was an outpatient of Perth Children's hospital (previously PMH) for 18 years with a number of admissions during that time. They have a complex disability and challenging behavioural needs that are at times untenable; with a rare diagnosis.  They have been seen by ENT, Endocrinology, Neurology and Paediatrics up until when they turned 18.  Over the years the support has been amazing and I have been grateful for the care and long term oversight from Neurology and Paediatrics. 

Unfortunately the issue has been my child’s transfer into the adult system which has still not occurred. In the lead up to them transferring to the adult system I was anxious to ensure a smooth transfer; PCH Neurology were to refer them to the adult system at Fiona Stanley (Neuro-Psychiatry) and I still, at the time of writing this, have had no word. As my child is on some serious medication, including Psychotropic medication, I was eager to ensure they were transferred smoothly in order to support my child and myself to navigate their complex needs.  I have called PCH Neurology at least 5 times over about 16 months just to gauge where their referral might be at, as they are in need of a medication review and a full overview of their health needs. I have recently been told my child has been discharged, however with no referral?

I feel this is very distressing and I am deeply concerned about how we have fallen through the cracks, despite being super vigilant about my child’s needs.  On a day to day basis my child can escalate in behaviour up to 10 times (including aggression and violence) and finds it impossible to participate in day to day activities.  They struggle to keep support workers and wont engage in daily activities. I feel let down, extremely under pressure about my child’s and my own future and deeply worried about how to now get the medical support my son needs in order for them to live their best life (as well as how I may be able to find a life after the years of caring for them).  I am looking for any advice or support on how to get their transfer completed, a fully health review and med review conducted urgently.  Thanks for hearing me out.