"My child's visit to RGH"

I presented at ED with my child who is a young adult. This would be the second time in 8 months. They're severely autistic with ID, non verbal. They're aggressive and agitated. At our last visit, we learned they had developed Tardive dyskinesia due to antipsychotic medication. The medical team were kind. They acknowledged that my child slips through the gaps when it comes to medical specialty. Little did I know how large and what an impact that gap would have The medication was stopped and they were discharged hoping for some improvement over time and with an urgent neurology appt to come.

During the following 8 months, nothing changed. We are a family in crisis, living this strange life where my elderly mother is locked in her part of the house for safety, where we tag team with my other children and partner to leave the house for appointments, work and necessities. We tip toe around triggers and accept daily, even hourly assaults as fairly normal. We haven’t received a neurology appointment yet.

We have NDIS funding, but it’s woefully inadequate. All services are on hold for the safety of staff.

We didn’t really want to present to ED, but we are broken, and had no where else to turn.

As they had been each time, ED staff were fantastic. So accepting and compassionate, so quick to act, so thorough in their investigations. We ended up in the short stay unit with a 24/7 security guard.

It so happened to be the day of a neurology visit, but they couldn’t see my child. Psychiatry breezed through. They said my child shouldn’t be here, and reiterated that in the discharge letter. These things should be dealt with in the community. I know this is true, but really, we’ll go home and somehow, magically, it will all be fixed in the community? The psychiatrist prescribed a new anti-psychotic at a low dose, hoping it would help the aggression, but not trigger the Tardive too much. I believe they wanted no further input.

Social work came by at request. I had been advised they could facilitate reports for NDIS. Because the SSU is not technically ‘inpatient’, they couldn’t help.

The medical team were nice, I got a hug during the round when the tears inevitably came. I asked help with the following: a plan going forward, a follow up to review the medications and any needed changes, an emergency plan for when things escalate eg, a prn medication, any reports or letters to expedite Ndis, and somehow, a neurology review. Psychiatry involvement would be nice but I knew that wouldn’t happen.

2hrs later we were discharged with none of that. No follow up, no info on what to do if the medication doesn’t work, no neurology appointment, no idea what to do during escalation, no reports. They somehow managed to be kind and understanding whilst simultaneously, I felt, throwing us under the bus. My child was literally hitting my partner as they watched us walk off the ward. Oh and the psychiatrist suggested finding a private psych, even wrote that in the discharge letter. Assuming we could afford it, finding one to take my child on is extremely hard. We’ve tried. They either have no capacity or find them too complex and suggest going through the public system for a more holistic approach. * laughs, but with tears.

So now I’m home. My child remains the same. We are all at risk in the home. The new medication has exacerbated the Tardive dyskinesia. I don’t know what to do. Do I stop it? Persevere? If only I had a plan, someone to advise! I feel abandoned. I feel I’d be unwelcome back at the hospital.

So I feel my options are; 1) soldier on as long as possible and hope ndis comes through. 2) represent to ED and do it all again. 3) go to ED and leave my child there, just not come back (we’re probably not there yet). 4) drive off a bridge (no, not really).

That’s it. I’ve nothing left to say. My child's just gone to sleep after being awake for over 24hr. I’ll probably try to sleep.