Never debase this currency

The Child Cancer Foundation should be chastened by even isolated instances in which these beads have

been delayed, withheld, or handed out as if they were ... supermarket promotion collectables.

Beads don’t get a lot of respect, ordinarily. They’re typically seen as trinkets, perhaps of arty crafty interest or useful for some prayer rituals, though no longer acceptable for the purposes of land acquisition.

However, there is a modern circumstance in which they have real currency. ‘‘Courage beads’’ given to children having cancer treatment aren’t meant as colourful distractions. The public is told that, each time a bead is given, courage is honoured, suffering alleviated, resilience strengthened and the experience of caring affirmed.

The Child Cancer Foundation (CCF) should be chastened by even isolated instances in which these beads have been delayed, withheld, or handed out by the bagful as if they were no more than supermarket promotion collectables. To children, these are fair and earned acknowledgment of their bravery in the face of a terribly unfair and thoroughly unearned sickness. Any sense of achievement, countering what might otherwise be such an abject feeling of helplessness, becomes precious. If these beads are denied them in a way that itself seems unfair, how dispiriting is that?

So it’s no small thing to have reports of backlogs. It’s discomforting that the rules implacably insist a monitoring scan after active treatment doesn’t qualify in the way that a scan during treatment would (even though a sense of fear at the outcome is still there).

Or, where once a co-ordinator would take time to explain the success represented by each bead, these might now be bagged up and handed over like a side order of fries. Which leads to the wider issue – concern that such lapses might point to a wider systemic problem resulting from the foundation’s transition to a more centralised hub for its support co-ordinators.

CCF is one of many organisations that have been making such changes, often for good reason. In this case, there’s clearly a tension between two of the foundation’s declared goals. It seeks a more coherent approach nationwide than the more branch-orientated system was deemed to deliver, at the same time as aspiring to offer more flexible assistance to families.

Not easy, because the two goals can work against each other. Unless artfully managed, coherence can be pursued in ways that reintroduce inflexibility, and decisions in the name of flexibility can reintroduce inconsistency.

Sure enough, we are learning of families with a sick toddler finding they were entitled to a $5000 make-a-wish grant, but no more than $100 for groceries. Family expectations must themselves be reasonable, but it is thoroughly reasonable to expect that they each receive the same advice about the rules.

There have been failings in this respect too. Transitional difficulties may be fixable by training and experience. More concerning, in the bigger picture, are reports of stressed family support coordinators who are not coping and blaming workloads, raising questions about whether the resourcing is sufficient for the model.

Many’s the family that stands ready to affirm the quality and constancy of support they receive. But it does appear that, under the hub system, the quality of a family’s experience with CCF depends in part on where one lives, the co-ordinator one gets, and the workload they’re under.