My son and I returned last night after a journey of 15 hours in Emergency.

My son is 21 years old, severely physically disabled, and requires 24-hour care. He communicates nonverbally and is an amazing young man who has led an inclusive life.

I feel the need to highlight the experience of waiting for treatment in a Public Hospital. Even with a ‘sense of humour ‘the wait for medical treatment can be ‘challenging and exhausting. Accessing Emergency treatment is not always an easy journey.

I wish to emphasise that during this experience every staff member treated us with kindness and respect. The majority were nurses, all of whom were clearly capable, committed and working tirelessly in a pressured environment.

On Thursday evening, at 10.30PM, my son began vomiting (at home) with what appeared to be blood. There were also concerns regarding the tube for his peg feeding which appeared to look more prominent than normal. We tested him for covid which was negative and set off for the hospital in our wheelchair van. We realised it was going to be a long night but ensuring he was ok was imperative. Naively we hoped the late hour of the evening would be advantageous in receiving treatment in Emergency.

By 11pm we had arrived at the hospital emergency, there were approximately 25 groups of people awaiting treatment.  We were quickly triaged by a nurse and returned to the waiting room.

At 2am I asked the triage nurse what the possible wait time was to be seen. I was told anything from 2hr to 5 hrs. In truth it crossed my mind whether we would be better off going elsewhere. Knowing my son’s treating specialists were based at this hospital, I decided to continue our wait.

Could , my son, my friend and I cope another 5 hours?  Fingers crossed the wait would not be too much longer I said to myself.

Around 3am we were called to X- Ray to check the position of his peg tube. At this point we still had not seen a doctor. Again, the staff exhibited outstanding care, communicated with my son, and made the process seamless.

After the X-ray we returned to the emergency waiting room. Anxiously we hoped to see a doctor and hear what the X- ray showed.

By 5am we still had no idea whether the tube was in place or not. Al would soon need medications and flushes of water. We had now reached 6 hrs.

I spoke to the reception staff to ask where we might buy a tea or coffee. One of these kind women made a cup of tea for us both.

Perhaps it was the caffeine in the wee hours of the morning, but several entertaining ‘moments occurred’ in the following time as we desperately hoped his name would be called. Each time the electric doors opened a doctor in green scrubs would appear and call out a name. Would we hold a winning ticket for treatment?

Here is a little of the in-house entertainment.

1.The NIDA academy performance Medal – This goes to the young man who crawled in the doors with gastro at 4am, armed with an empty bowl, he lay on the floor with loud exaggerated vomiting noises, which disturbed the quiet ambience of the room. Meanwhile his young partner dutifully attended to him. He lay prostrate on the floor hoping the performance I assumed would get him seen quickly.  Keeping up the performance waned somewhat after an hour or so.

When finally called, he quietly stood and walked without effort. Everyone waits their turn!

2. The man who waited 12 hours:

This gentleman approached the tirage nurse and said he had been there 12 hours and his wife had not yet been seen. The tirage nurse explained there were ambulance patients coming in needing resuscitation and he could not be put ahead of them. I turned to my friend and thought how could he be there so long? It did not make sense.

I had no idea we would be there over 12 hours ourselves.

3. Colourful Inmates. The colour and interest when three young prisoners with their corrective services guards arrived to wait amongst us in the waiting room. Each dressed in their bottle green prison gear, complete with hand and foot cuffs. My son’s eyes were out on stalks as he watched them settle in comfortably. One young man, sporting two black eyes was cheerful and enjoying the outing.

Another kindly wished my son “All the best mate, take care” as they lay side by side in the x ray department. We were almost in another universe, each of us in line for help and treatment.

4. The Patient Experience Coordinator Counter

This counter sits empty at the front of the waiting room as if part of a set from a movie.

We wait patiently in seats facing the treatment area, always hopeful our name will be next.   The words “Patient Experience Coordinator, in big black letters calls out to you.

Why would they have this desk, when we are all having such a long and tough experience?

After 6 hours of waiting, I walked to empty counter and stood behind it as if I was the ‘Patient Experience Coordinator. The irony of the long wait, with this empty desk seemed so amusing to me in those wee hours of dawn. No one manned the desk, were there any ‘good’ patient experiences to discuss. Later that morning I noticed there was a Patient Experience coordinator, she appeared during the day and sat at the back of the room at a tiny table. She told me she never used that desk at the front, it wasn’t safe to sit at as she couldn’t get away from the desk (Too many complaints I surmised)

As I stood behind the desk in jest, No one noticed me, we were all too exhausted to care.

Meanwhile a stream of potential patients continued to arrive in the waiting room. We could also see through the glassed windows of the treatment area, the flurry of staff including the doctors, as they worked hard managing the flow of patients arriving from ambulances.

Around 6AM we were finally called up, seen by a doctor and a treatment plan explained including another X-ray for his chest to check for aspiration. We went to X-ray and then returned to the waiting room.

By 10.30AM three hours after my son’s morning medications were due, I asked the tirage nurse for some clarity on his situation. By 11.30AM I asked again as we still had no knowledge of whether the peg was safe to use or if he had aspirated. He had more medications due at 12:30PM and had still had no water or flush for 15 hours.

By 12.15PM we met the Gastroenterologist registrar who confirmed they were waiting on another X- ray procedure to ensure the peg was functioning correctly and that we could proceed with the 7.30AM medications.

By 1PM we were back in radiology for the procedure which was another example of caring and professional staff.

Around 2PM we were back in the Emergency room awaiting results and happily a discharge report that gave the green light to return home.

As we were handed the discharge summary from the tirage nurse, she apologised for the long wait for treatment.’

“We are so sorry”’ she said, “You shouldn’t have had to wait so long”.

We waited while the reception desk ordered a ‘Maxi Cab’ to take us the 20kms home. My son’s power wheelchair will not fit in a standard disabled cab.

Half an hour after the booking was made as we sat outside Emergency the Maxi Cab company rang to say they had no Maxi cab available to come sorry!

Travelling with someone in a wheelchair is never straight forward.

My friend then drove her own car back to our home in the Friday afternoon peak traffic, returning with our own wheelchair accessible van. Round trip for her took 2 hours. We were discharged from Emergency at 3:00PM, and finally left the hospital at 5.30PM.

Two significant mistakes in the Hospital discharge plan:

1. My son does not have epilepsy as it states
2. He does not have a Mickey Peg, as it states (he has a dual gastric and jejunal peg)

We were there for a peg issue so this is concerning the discharge plan is incorrect.

We arrived home around 6.30PM.

Our total Emergency Experience had become 20hrs.

Hopefully we can work towards improving Emergency wait times for all.