"Quality of care in children's oncology service"

We were told to come in for a chemotherapy treatment on an agreed day in Feb 2020.

We arrived fairly early in the morning. Having fasted all day – a prerequisite to treatment - we left in the evening on the same day without treatment. We waited all day to be told we were a lower priority and could we come in tomorrow instead.

We are extremely stressed as it is - our beautiful child has a nasty cancer - very life-threatening. Add to this a day’s worth of fasting to a child who is low on reserves initially, our stress levels were reaching very high levels by mid-afternoon. Although I don’t believe that missing chemo treatment on that day will impact my child's prognosis - it won’t - why put us through all the stress of waiting in hospital and fasting all day to be asked at the end of the day if we can please come back tomorrow?

I felt that surely the hospital team could have told us midday that it was unlikely they could fit us in that day, and could we come back tomorrow?

I feel the oncology ward at Randwick sometimes treats you like a number. We have been battling cancer for years - lucky us eh? It is draining logistically, financially and emotionally. If the hospital could schedule better and not make us wait for a full day, with fasting, then send us home with no treatment saying come again tomorrow, I believe that would greatly reduce our stress.

I wouldn’t dare confront the staff directly as I’d feel such a confrontation could jeopardise my fragile child's level of care. My challenge is to the clinical / doctor staff, not the nursing staff who do a tremendous job.  I do feel that some (not all) senior Oncology staff members don’t like questions.  Perhaps a more collaborative and consultative approach to treatment could be considered, than the traditional directive doctor-patient relationship?

I am not convinced that after several years battling cancer at Randwick that the overall level of care is as good as it can be. Examples include providing what I believe to be unrealistically low prognosis numbers that seem to contravene every major study that has been done on the disease on children at exactly the same stage (there are thousands of children who have been, and are being, successfully treated), lack of clarity in terms of what treatment program is better than the other when the disease and my child’s stage are relatively common for the group of child cancer sufferers, vague answers when questioned further about aspects of the disease. To me, it appears that they haven’t researched enough. Why do I have to research and correct them? My view is compounded by the fact that the traditional directive doctor-patient relationship style appears to be preferred over the more consultative approach, reducing the opportunities to “consult”.

As a further example, one doctor would support the research and quote a 75% overall survival (give or take) while another is like the grim reaper and quoting 40% - 50% without, in my opinion, any substantiation. When I pressed further quoting the research and vast numbers of children who have been treated, the doctor quoting 40% - 50% admitted that estimate was a conservative ‘low end’ number. The whole experience does not leave me with confidence.

We don’t have a choice. We are with Randwick now and our child's life depends on the level of care this team provides and their depth of knowledge and commitment. I feel powerless, frustrated and unable to complain or comment for fear of further jeopardising my child. I am almost at the stage now where I have given up even though my child's prognosis is, in my opinion, >70% based on thousands who have been cured worldwide of a similar stage as published in leading journals based on multiple 7-10-year longitudinal studies.

Yea - I know Drs will say statistics mean little - it is how your individual child responds and this varies by child. I believe that’s a cop-out - statistics give you realistic hope if the numbers over thousands of patients point to >70% cure / 10-year survival. Why wouldn’t you be positive about that? It’s not like it’s stage 4 small cell lung cancer where you are realistically told 5% and 3-year survival. We are talking about what I understand is a fairly treatable cancer here, with obvious caveats such as how the patient responds to chemo, genetics and other variables that can mean you are in the 30% that don’t survive. Concern for me is that I believe the Drs have to be challenged with research findings from reliable sources and journals before they say oh yea, amend my pessimistic 40% and go with 75%.

I may be reading things wrong re the (Dr) team at Randwick Children’s. This is coming from someone who is very stressed, sad and full of emotion. But I can only call out things as I see them.

I just want to know my child is receiving the very best care and advice available. That’s all I really care about. I’m probably being unreasonable and not fair raising these concerns anonymously.