Humans.org.nz Home

Saving child cancer services at Wellington Hospital has been a major public health issue lately. However, this situation need not have arisen if some forward planning had been done in the 1990s. It takes about 15 years to train a paediatric oncologist and there is a global shortage of these and other skilled health professionals.

There are lessons here for autism services too. Autism and child cancer services have more in common than might appear. Both require teams of highly skilled professionals. Both conditions have grown in profile over the last few decades. As recently as the 1970s child cancer was mainly treated palliatively while at that time autism was thought to affect only about 1 in 3000 people and institutionalisation was still an option. Access to education or support was problematic.

But now both child cancer and autism are increasingly common and New Zealand parents have expectations of intensive state funded intervention, partnership with providers and professionals, and participation for their children in schools and other settings. (Not to mention that children with autism are developing cancer and some cancer treatments - such as for brain tumours - may leave the child with autism like conditions). NGOs such as the Child Cancer Foundation and CanTeen have a visibility and status that autism NGOs can as yet only envy.

Autism support, like child cancer interventions, involves having a workforce of well trained paediatricians, speech therapists, psychologists, social workers, teachers and many others. So to keep the workforce sustainable there must be ongoing planning, professional development and support, union overage and good remuneration. In the early 1990s training and career development for speech therapists was cut. Once this policy was turned around after 2000 it still took several years to train a new workforce of speech therapists – people who play a vital part in autism support.  As consumers we have a role here.

While my younger child has led me through the autism maze, I learned about child cancer after my daughter was diagnosed with leukaemia just before her 6th birthday. At that time my then undiagnosed autistic son was a toddler who spent much of his time running away shrieking loudly along hospital corridors - the embodiment of what the rest of us would have like to do.

In the late 1980s my young daughter was admitted to the old Ward 18 of Wellington Hospital for cancer treatment, so I have a personal interest in this issue. The ward was shabby and a relic of the era when parents had no place in their child’s hospital care. There was no Ronald McDonald house and accommodation for parents was limited. The Child Cancer Foundation did not have a local presence. There were no play therapists and non family members – even those who offered to read to or entertain children - were discouraged. There was no cognitive testing to monitor the effects of treatment or late effects clinics. Although Camp Quality had recently started there was little understanding of the needs of siblings. The best you could hope for was your child’s survival.

Then, as now, children came for treatment from a wide geographical region of New Zealand and from a variety of socio-economic and cultural backgrounds. Compared to today treatment was pretty primitive and cure rates not terrific. Several children died in our first few months there. But after a couple of years my daughter’s treatment finished and a new children’s hospital was built. Then there was a crisis as the oncologists left. The Child Cancer Foundation and parents combined to fight for the service. Gradually specialists were lured to Wellington (although the turnover remained high) and the service struggled on. But Hamilton and Dunedin lost their treatment centres.

A farsighted approach would have been to sponsor some promising junior doctors to train overseas as paediatric oncologists and possibly bond them to Wellington for a time. This idea was raised by parents but was out of line with the free market 90s.

For these were the days when the market dominated in health; there did not appear to be any workforce planning, there were no elected representatives on hospital boards, and little cooperation between the competing health providers. For a time there were even lines on the floor of the hospital to direct the client (as if there was a choice of treatment options!) to the outpatient visit payment office.

So fast forward to 2007 and what has happened? There is a nationwide Cancer Control Strategy. Centralised workforce planning has led to increased capacity in areas such as radiation therapy. Nurses have won a multi employer collective agreement and significant pay increases. Capital Coast Health DHB now has a majority of elected members and they have voted to ensure Wellington child cancer services remain in an innovative collaboration with Canterbury DHB. Meanwhile diagnosis rates rise as do the expectations of long term survival.

But finding paediatric oncologists is only part of the story. They also need to stay. Staff turnover in the whole paediatric oncology area is high as this is stressful medicine. The treatment regime is tough for patients, parents, and professionals who have to force toxic chemicals, pain and suffering on small children.

And sometimes children die. This is a dilemma for health professionals as hospitals are geared to interventions and treatment– not peaceful palliative care – and there is no local palliative facility for children. A child’s dying is sad but also very powerful – invariably these children are wise, knowing and accepting and can teach us a lot about compassion and generosity of spirit. Death is part of life. The experience of childhood cancer is not necessarily something to regret. It may be a chance to re-evaluate and prioritise your life. It has given me a strong belief in children as complete human beings whatever their age, worthy of rights, dignity and respect. They are not the possessions of their parents.

You also see the nice side of humanity. I still appreciate the kindnesses of others 20 years ago. When my daughter couldn’t stop vomiting in the carpark someone nearby handed us a towel. I will always be grateful to the friends who organised a food roster and support. And so grateful to everyone who helped ensure that she survived.

But having a child in hospital will exacerbate any existing tensions so families often go into basic survival mode. Family problems, money, employment, religious, relationship and even custody battles may be fought out over the child’s bed. The hassle of finding a park might be enough to tip an exhausted parent over the edge. I recall how mothers either dramatically put on or lost weight from the stress. Guilt and worry about the rest of the family is great. The nurses or other front line staff will often be the targets.

To survive in a caring profession you have to be cared for. Health professionals understand about tight resourcing in a free public health system. But the little things that make the difference often don’t cost much money: the mentoring; the professional supervision; the acknowledgement of a hard job well done; the back up support; the opportunities for professional collaboration. Hospital staff are not heroes or villains – they are ordinary people trying to do a job. We owe it to them to future proof their professions whether they are nurses, doctors, specialists, radiotherapists, dieticians, physiotherapists, administrative, NGO or other staff. And let’s not forget the expertise of the volunteers and the parents. Hospitals are organic, and to be healthy those inside need to be nurtured.

It is a similar story with all the people who work with our autistic children. Not forgetting those who support adults on the spectrum.  Speech therapists, psychologists, social workers and teachers require education, career pathways, professional support and good remuneration.

You could think of both conditions diagrammatically as a series of concentric circles with the child in the centre circle, surrounded by circles of parents, family, support services, health and medical professionals. In my experience parents often feel alone and isolated but problems are often due to lack of communication and relationship development between circles.

Especially at this time of year, I would like to acknowledge all those health, education and other professionals who work with our children. It is great that people choose careers that are about supporting the wellbeing, health, education and humanity of others. As a parent I appreciate what they do, from the paediatricians to the street level bureaucrats, the teacher aides to the contract managers, the volunteers to the cabinet ministers. And all the taxpayers who fund it.

But Governments through their health and education services, need to continually plan ahead to ensure the professional expertise needed for both conditions is available, and then to adequately support and remunerate those professionals working in the field. We must sustain and grow the workforce and consumer lobbying is one way to do it.

No parent knows what is around the corner for their child. For those children who will need cancer treatment or autism support let’s work together, plan together, and share perspectives to ensure the workforce and the services will be there when needed. It is up to us as consumers to be continually vigilant and active.

Hilary Stace