Battle for beads
Changes to the way the Child Cancer Foundation operates have left parents and children feeling ignored. That extends even as far as having to fight for their children’s entitlement to ‘‘courage beads’’. Amy Ridout and Tony Wall investigate.
One thousand colourful ‘‘beads of courage’’ map 7-year-old Levii HaslettHood’s painful cancer journey.
Levii was 3, and had just started kindy, when he was diagnosed with lymphoblastic leukaemia. ‘‘It’s quite daunting when you look at all of them, as it reflects on how many procedures he’s gone through in his small life,’’ says his mum, Brooke Haslett, of Nelson.
For children, the beads are a way to process what is happening to them and take back some control.
Each bead represents a treatment, such as a chemotherapy session or a scan, an experience such as hair loss, or a milestone.
‘‘And they get to pick out special beads, if they’ve undergone something bigger than a normal event for them,’’ Haslett says. ‘‘Levii used to love sitting there and counting out his beads and putting them on the string.’’
But when Nelson lost its locally based Child Cancer Foundation (CCF) family support co-ordinator in 2017, instead being serviced from Christchurch, the beads dried up.
‘‘If we weren’t in the hospital for treatment, or if he wasn’t sick, we wouldn’t see [the co-ordinator]. At times we’d have a hundred odd beads to catch up on.’’
While his last co-ordinator would sit with Levii and talk through the different beads, the new one did not, and he lost interest.
‘‘Obviously lots of beads meant he’s been going through loads of stuff, but she wouldn’t go through it with him. That was disappointing; the care factor was a little lacking.’’
The Beads of Courage programme began in the US, and CCF holds exclusive rights for New Zealand, paying for the beads through its fundraising.
Other parents have spoken of having to fight to get hold of beads they believe their children were owed – one saying she was even told her child ‘‘didn’t deserve’’ a certain bead.
The foundation sticks strictly to a policy of giving beads only to children on ‘‘active’’ treatment such as chemotherapy, meaning children who still have regular hospital visits for various scans don’t get them.
Parents spoken to by Stuff say it’s one of many frustrations they’ve experienced with CCF, including trouble connecting with support coordinators in provincial areas, and support dropping off once treatment finishes.
The foundation’s chief executive, Robyn Kiddle, says she’s sad to hear some families feel this way and encourages them to get in touch to discuss their concerns.
She says the foundation has been on a ‘‘five-year journey of change’’ that includes bringing its family support co-ordinators into centralised hubs and cutting out duplication of processes.
As for the Beads of Courage, Kiddle says there is no limit to how many beads a child can receive during treatment. Once treatment is complete, they receive a final ‘‘purple heart’’ bead.
‘‘Testing, MRIs . . . after the treatment ends are not part of this programme and therefore do not qualify for beads,’’ Kiddle says.
‘‘We understand and regret if any children are disappointed. This is absolutely not something that we want to happen. However, the way the programme operates is made clear to families to try to manage their expectations.’’
For a child to rejoin the programme, CCF needs confirmation from their doctor that they have relapsed or are in palliative care.
Canterbury mum Simone Weaver, whose baby son Harley was treated for cancer in 2015, says that policy is ridiculous.
She claims Harley is owed ‘‘tonnes’’ of beads from all the scans he’s had done but CCF refused to provide them.
After Harley finished chemotherapy, Weaver says, he had MRI scans and ultrasounds every three to six weeks.
‘‘I rang [the co-ordinator] and said, ‘I’d like to get these beads’ and she said, ‘He’s not going through active treatment so he doesn’t qualify.’ I completely lost it with them.
‘‘He has active appointments for five years. It’s not like the story is finished and the book is closed and that’s the end.’’
Taranaki woman Melanie Terrey also fought for beads she believes her daughter Bobbie should have received.
Bobbie, now 6, was diagnosed with leukaemia in 2016 and finished treatment about a year ago. Chemotherapy left her with a brain injury, and she now receives ACCfunded treatment.
When Bobbie reached the milestone of being able to use the toilet by herself, Terrey asked for a special picture disc bead. ‘‘But the co-ordinator said, ‘Oh no, she doesn’t deserve that bead’.’’
Again, the family was told that, because Bobbie had finished primary treatment, she didn’t qualify – but she continues to go through intensive therapy for her brain injury.
Another Nelson parent, who asked not to be named, says the trauma of treatment left her child unable to speak about her experiences, even with her family.
The exception was when she received her beads from her Nelsonbased co-ordinator. The pair would sit and talk through each bead.
‘‘It was the only time she would discuss what she had been through.’’
The new out-of-town co-ordinator ‘‘chucked the beads in a bag and handed them over. It was so disappointing’’.
Simone Weaver says it wasn’t just beads that her support worker seemed stingy with. On another occasion, the worker asked Harley’s older sister what she would like for her birthday.
‘‘She said ‘Lego’ and [the coordinator] said, ‘OK, we’ll get you some Lego for your birthday.’
‘‘Two weeks later I get this note
. . . in an envelope in the mail and all it said was, ‘Lego is not ageappropriate’ and that was it; no other present. My wee girl was heartbroken.’’
Kiddle says she can’t comment on specific families for privacy reasons, but ‘‘if [that] is correct, it is very
concerning indeed and we would like to investigate’’.
Some families feel that the beads of courage issue is symptomatic of a general drop-off in support once a child finishes treatment, a feeling of being ‘‘cut adrift’’ by CCF.
One Nelson parent says she was told she was ‘‘no longer on the case load’’ by the Christchurch-based coordinator once her daughter finished treatment.
‘‘I asked what that meant, and she said, ‘That means you don’t get visits and we don’t contact you.’ ’’
When families complained, the coordinator arranged a meeting with her, she says. ‘‘She talked about how much stress she was under, and how she had been handed all the Nelson families.
‘‘She had no interest in meeting the family, she tried to schedule appointments in school hours. Meetings felt rushed, when she called she would say, ‘I have got to be here, here and here, when can you fit me in?’ ’’
Former co-ordinator Catherine Richardson, who worked for CCF in Christchurch, says the drop-off of support after treatment has been a source of ‘‘long-term frustration’’ for families.
‘‘There’s continuously new families being diagnosed . . . and you tend to focus on the [families] that are just coming into the system; they probably get more support in the earlier weeks and years than they do later on.
‘‘Even when chemotherapy finished, I would try to meet up with families, but that was always quite challenging to do, you had to make an effort to make sure you kept in contact with older families.’’
Kiddle says the foundation tries to empower families to be able to move ahead on their own after treatment, handing them over to local Connect groups run by other parents.
She admits the transition process has been too fast for some families and the foundation is looking at introducing a more comprehensive ‘‘discharge’’ meeting to ensure they understand what support is still available.
‘‘We think we can probably do it a bit better.’’
Another concern for some parents in provincial areas is that, under CCF’s new structure, fundraising has been taken away from them.
Kiddle says the charity used to be an ‘‘old-school, bureaucratic organisation’’ that at one point had more than 30 separate bank accounts. The national office had to fundraise for its own existence and was virtually in competition with its own branches, she says.
The bank accounts have slowly been closed, and fundraising centralised.
A former member of Nelson’s volunteer committee says they would run many events – one quiz night alone raising almost $30,000 – and didn’t need help from head office.
‘‘People worked so incredibly hard to raise the money, they wanted it to go to the local families.’’
In 2017, the committee was told funds would now be raised through corporate sponsorship, she says.
Instead of organising events and groups, the committee would need approval for funding from head office.
‘‘We asked, ‘What are you doing for the families?’ and [management] said, ‘They should be grateful for what we’re doing for them already.’
‘‘Everybody was unhappy. [CCF] couldn’t see the value in what we were doing, and we couldn’t see why they were taking everything away.’’
Taranaki woman Maree Tong wrote to the CCF board in August expressing concern that fundraising events were advertising that 100 per cent of money raised went to the ‘‘Taranaki branch’’, when in fact it went into a central account.
She felt this was misleading. Kiddle wrote back confirming CCF no longer operated with branches, but assuring her ‘‘funds raised in Taranaki are definitely being spent on families from that region’’.
‘‘In the last financial year we can account for $24,000 spent on families in Taranaki, and the year before that it was $43,500,’’ Kiddle wrote.
‘‘The shortfall in funding is being made up from other fundraising income generated outside the Taranaki area, such as bequests.’’
Several families claim CCF feels more like a big business than a charity, but fundraising consultant Lisa Wells says while most not-forprofits need to run in a ‘‘businesslike manner’’, it doesn’t make them businesses.
Large charities walk a fine line between addressing stakeholder needs while considering their charitable purpose, she says. ‘‘There’s an incredible tension there.’’
In recent years, many charities have closed regional branches and centralised their fundraising. While this is more cost-effective for the charity, it can affect a community’s goodwill.
‘‘It feeds into the perception that nobody cares about them,’’ Wells says.
Philanthropy New Zealand chief executive Sue McCabe says charities face public pressure on how they operate.
‘‘The public can be really harsh on charities and how they spend their money.
‘‘The reality is that charities do run like businesses, they’re quite large, and that may feel to people like they’re a business.
‘‘People want 100 per cent of their donations to go to service delivery, and that’s fine, but the reality is no organisation operates without overheads.’’
Charities need to create financial resilience against economic fluctuations, inconsistent funding, and unforeseen circumstances.
‘‘All charities can do is be really transparent about what they’re spending money on, and why.’’