"Care after brain surgery"

I had to accompany my adult child to the Royal North Shore Private Hospital for brain surgery. They had to stay for two weeks and I didn’t know anyone in Sydney. Two weeks without visitation was too long, so I went along.

It was a horrifying and ghastly experience, which we have talked to them about. We’ve received 'I’m sorry' responses, but there were so many things that weren’t handled appropriately that I would hate for other people to experience what we experienced. I felt the responses were inadequate and the issues were simply brushed over.

So I want to put it out there.

One reason is that we were there for a long time. Most people I observed only came for a night or two and therefore had a very narrow opinion of what was happening there. I ended up staying there every day for 12 hours a day. I did that because I had to mitigate the circumstances.

There are seven guidelines in the Health Charter that patients can expect, things like confidentiality, respect, appropriate nursing care and open discussion about concerns. In my view, they broke every single one. Everything was mishandled, including some really serious issues.

Even on the last day, my child received the wrong medication. It wasn’t even listed for them, it was listed for someone else. This was as we were getting ready to leave. My child's final medication was wrong and seriously dangerous. I was horrified. It didn’t just happen once; it happened multiple times. Every time they had medication, I had to check it because my child was there for brain surgery and could not monitor these things themselves. I became the safeguard.

What was really upsetting was that the senior staff did not seem to recognise there was a huge problem. Not all of the nursing staff, but there were some who completely let down the service. When I spoke about them, I was told, 'we’ll do something about that,' but nothing ever happened.

Even when they designated special nurses to my child and set up a system where a nurse would stay in the next room with all the information and be on instant call, some followed that arrangement and some did not. Some would disappear to other areas and I had to go and find them instead of them responding to us. It was constant. I found there were constant problems with rudeness.

The hospital registered me as a carer and provided my meals, which was appreciated. However, the meals were constantly wrong. When I raised this, the team leader on one particular night came into our room and shouted, saying, 'you ordered this. See, I have it on paper. You ordered it.' The staff member was yelling at us. I said that even if my child had ordered it, you do not come into a room and yell at a person who is helpless in bed because they ticked the wrong box on a form.

When I reported that behaviour, I was told the nurse manager would address it. I said an apology would be appropriate. I was told one would be written, but it never arrived. When I followed up, I was told, that the staff member is a good worker, 'we want to keep them'. and they’re not going to force the staff member to write an apology.

After my child came back from ICU onto the ward, they said to me they feel dirty. My child is autistic and has light sensitivity. I turned on the light and found them covered in blood and vomit. The bed, sheets and gown were all soiled, and nobody had cleaned my child up or changed the bedding.

When I asked why this had not been done, I was told they thought my child too sore to be moved. My child was sore, but they also could not see or hear properly and was completely helpless and vulnerable. I asked, "did you ask my child whether they would like to be washed up?" The staff said, no, they didn’t ask.

When I went to the desk and asked when my child's next medication was due, I was told that my child's got a bell. There was a constant level of rudeness. Nobody ever explained the rules for carers or told me what was expected of me.

Some nurses also kept my child in incredible pain. On one occasion, three nurses were standing in the corridor having what they described as a staff meeting. I said to them my child really needs their medication. Can you break away and give it to them? I was told no, and we had to wait another 45 minutes.

If the woodwork is rotted out with worms, the whole framework is affected. It costs approximately $2,000 to $3,000 a day to stay there. If you were staying in a hotel and paying that much money, you would expect a certain standard of service.

I will say one more thing. This situation smacks of something I have seen before. My experience tells me that people with disabilities who complain are often disbelieved. Why? Because they are disabled, and there is an assumption that they cannot accurately report what happened, that they exaggerate, fabricate or make things up.

I want it clearly understood that these observations are coming from me, an active adult who witnessed these events firsthand. That is very important because otherwise there is a tendency to dismiss what happened.

Mentally, I felt my health suffered. I felt trapped in the situation. My child felt unsafe. I made a formal complaint, and all I received was, sorry this happened. It shouldn’t have happened.

They say staff will have to change, but you never hear anything further. You don’t know whether anything actually changes.