Tell us the truth

I’ve realised you can say anything you like on a blog. Whether it’s wise to do so is another matter. Having read the article in the newspaper this weekend on all the privacy implications, it’s tempting to zip up forever.

I can’t zip up though about the latest piece of news on the Wellington Paediatric Oncology Service. Once again we are told that the oncology staff have resigned. That’s four down in 18 months. Something is wrong. For those of us who are parents of children living with cancer, how do we get to the truth of the matter?

“Numbers ‘too low’ for child cancer unit” the headline says. Read the article in detail and you get the impression that Capital and Coast DHB can’t maintain the service because there are not enough children being diagnosed in the region that Wellington covers. We are told that Auckland is the only place in the country that can provide a full tertiary paediatric oncology service. We are left with the message that like Dunedin and Waikato before it, the Wellington paediatric oncology service is inevitably going to become a secondary service only.

The vast majority of us are left to draw our own conclusions from such incomplete information “sound bites” as are provided by mainstream media. It hardly gets us any closer to a full understanding of the truth of why Wellington is repeatedly failing to sustain its tertiary level paediatric oncology service. We must dig a little deeper.

Parents like us are privy to a little more information than most. We were emailed a letter from the Chief Executive of CCDHB, which amongst the other expressions of condolence and soothing words of diplomacy, said, most significantly I think “…one of the things this [resignation] has highlighted is just how challenging it is to provide a comprehensive service such as Paediatric Oncology in a hospital the size of Wellington.” This suggests that the reason the latest clinicians have resigned is because Wellington Hospital is too small to provide a service they can work in. Unpack that one if you will.

The other significant thing he said was “[w]e are working with both the Ministry of Health and the Paediatric Oncology Steering Group to once and for all attempt to implement a model which is clinically safe and meets the needs of the patient and family”. This suggests three things: first, that CCDHB, the Ministry and the Steering Group are the ones with the power to make the decisions about the future of the service; second, that clinical safety is being compromised in Wellington; and thirdly, there is an acknowledgment that child cancer patients and their families’ needs are not being met.

So much for the official story. It does not get us much nearer the truth. I have heard plenty of other angles on this story, some anecdotal, some less so. Who knows if any or all or them are true, or just opinion. Here are some of them: the CCDHB management is fundamentally incompetent; the Board has consistently failed to ensure that management implements decisions it has made; various parts of the hospital are fighting over scarce resources and undermining the access of paediatric oncology to services it needs to provide clinical safety for its child cancer patients; paediatricians are opposed to maintaining a tertiary paediatric oncology service in Wellington because it is resource hungry and if it goes they will get more access to services for the kids they treat; previous paediatric oncologists have left in frustration at the ongoing lack of resourcing in terms of access to timely CT scans, operating theatre time, specialised oncology nursing staff etc, and being left isolated and clinically unsupported; according to British models of tertiary paediatric oncology provision, the Wellington region does not have sufficient numbers of cases to warrant the investment of resources required in a tertiary paediatric oncology service, nor does it have sufficient cases to enable oncologists in the service to see sufficient volume and range of cases to maintain and develop clinical professional development and expertise. One more thing I’ve heard: that a lot of this is about politics and power plays – Christchurch and Auckland seeking to grab a bigger share of the resources by undermining Wellington’s tertiary status.

How do we find out the truth? Is it in what people say, or what they do?

How do we know why paediatric oncologists continue to resign in Wellington, when they are never permitted to tell us why (presumably because of the confidentiality clauses in their contracts – but then, I don’t know if this is the case or some other reason). We have to guess, and guessing is not a basis for confidence and acceptance of what is happening.

How do we know what the real issues are, if we are not party to the discussions that go on amongst health officials and DHB staff who make these decisions? Yes, we can request information under the OIA Act, but not everything is written down, and for very good reason. Officials do not want us to know the whole truth, if it might embarrass them or present them, their behaviour, their actions, their decisions in an unfavourable light. I should know, having worked in that game for years. Noone is afraid of giving out information of itself – it is the consequences of doing so in terms of political sensitivity, or how the information may be construed, that is what prevents us from telling the truth.

I have no doubt that most (if not all) of the people involved in this decision making process are genuine in their belief that they are working towards what is best for children with cancer and their families. Yet that is not their only concern. They have competing interests they are trying to juggle – in the DHB, demands for resources that compete with paediatric oncology’s needs for resources; in the Steering Group, demands for resources in other tertiary paediatric oncology services that compete with the Wellington services’ needs; in the Ministry, demands for resources across the health sector that compete with Wellington paediatric oncology’s need for resources. Demands for clinicians; your job or my job; your place or mine? So it goes on. This is obvious.

Back to the children and the parents who are directly affected. We cannot be objective. We feel angry, fearful, confused, bewildered, betrayed, anxious, exhausted and cynical. Our trust has been broken once again. Our faith has been undermined once again. For us, this is no battle for $ and resources – it is a battle of life and death for that which is most precious to us – a child we love. Those who can and will make these decisions about what kind of a paediatric oncology service we get and will get, and where we will get it owe it to us to be honest with us about what is going on. If the service is not sustainable in Wellington, let’s stop mucking about and start shipping our kids to Auckland or Christchurch permanently, and to hell with whether it destroys our family networks, so long as it gives us the best chance of saving each individual life. Or lets be honest if our DHB and/or our government is making trade offs with funding which means we won’t provide the world’s best paediatric oncology that can be offered, and that as a result, x number of children will die. It’s brutal, but that is the reality we face as parents, and no amount of mealy mouthed assurances will take that away.

For myself, I am grateful every single day that my daughter is alive. If she had been diagnosed with cancer and living in most other countries in the world, she would be dead now. The impact of what is happening with the Wellington service is minor for her, compared to many others. In her case, she has not had any proper follow up for 18 months. We are playing Russian roulette with the odds that she won’t relapse. The chance is relatively minor, but not non existent. If she does, she’s as good as dead. If she does, it is not likely to be picked up in time. And her ongoing effects of chemo are not being monitored. So it’s far from ideal, but it could be worse.

I hope when we meet with the health honchos in two weeks they will be honest, and tell us the truth. We may not like it, but at least then we can get on with doing what we will do regardless of what they decide – do the very best we can for our children.