Philippa Stevenson: Nurse Ward helps families see the colour of caring

The tragedy of the young Nelson father who killed his severely brain-damaged, five-month-old daughter struck a special chord with some Hamilton families.

They are the clients of a new child health service, which aims to support families at and from the moment their child is diagnosed with a chronic, serious or life-threatening illness.

True Colours manager Cynthia Ward, a palliative care nurse, said some of the 89 families the service has helped since it was established in May had also been given heartrending news about their newborns.

A jury acquitted the 34-year-old father of murdering his daughter after being told she had a rare condition, lissencephaly, which meant her brain hadn't developed past 13 weeks and would never improve.

Inevitably, the Hamilton families in similar circumstances discussed the case; some felt angry the child's life had been taken, others said "but for the grace of God, there I go", Ward said.

The handling of the Nelson family's situation has prompted a complaint, believed to have come from the man's extended family, to Health and Disability Commissioner Ron Paterson.

True Colours gets many referrals from Waikato Hospital's newborn unit and Ward said it's important to "walk along beside the family" as events unfold.

"Support is needed at the time of diagnosis," she says, "much earlier than when palliative care is needed."

I first met Ward more than a year ago when I wrote about a similar service, Rainbow Place, she had established not long before under the umbrella of Hospice Waikato.

It was the first agency of its kind in the country, and had literally responded to a crying need. In years of caring for the dying, Ward had found that too often in the painful hubbub surrounding terminally ill people, children's thoughts and feelings went unvoiced, unheard or misunderstood.

For three years Ward worked towards a child-centred service, asking families she encountered at Hospice Waikato about children's experiences, how they could be helped, what they needed, and what could be done better.

She talked to health professionals at the Waikato District Health Board, paediatricians, specialists in children's care at Auckland's Starship children's hospital, district nurses and other palliative care nurses.

Rainbow Place - named for children who imagined rainbows were happy, safe places - was the result. It covered the Waikato and Midland health regions with a mix of counsellors and nurses offering services from play and art therapy to a sympathetic ear.

Feeling that more could be offered outside the hospice umbrella, Ward left Rainbow Place and, with the help of health associates and friends, established the True Colours Charitable Trust in May.

The trust patrons are Waikato-bred musicians Neil and Tim Finn, whose ailing mother was nursed by Ward. Tim Finn came up with the new agency's name, which reflects its work, including music therapy, in a number of ways.

Twenty-five years ago, True Colours was the breakthrough album of the Finns' band, Split Enz. It is also the title of a Phil Collins song whose fitting lyrics include the lines:

You with the sad eyes
Don't be discouraged
Oh I realize
It's hard to take courage
In a world full of people
You can lose sight of it all
And the darkness, inside you
Can make you feel so small
But I see your true colours
Shining through
I see your true colours
And that's why I love you
So don't be afraid to let them show
Your true colours
True colours are beautiful
Like a rainbow

Adding True Colours to the Rainbow Place puts the Waikato in the unique position of having two grief counselling and family support agencies for children from birth to 18 years when barely anything similar exists elsewhere in the country.

The evidence that such services are sorely needed can be seen by the fact that both agencies are as busy as just one was before.

Rainbow Place co-ordinator Penny Parsons said the Waikato was "extra-ordinarily lucky" to have the two services. Because Ward had been so closely associated with Rainbow Place some families had been confused by the different options now available but the services co-operated to ensure they got the right help.

The main difference was that True Colours helped where chronic or ongoing illnesses as well as life-threatening conditions were involved while Rainbow Place concentrated solely on life threatening circumstances, she said.

The Nelson family's trials show that the Waikato isn't the only place with such a need.

But it's one of the few places that can give truth to the final lines of Phil Collins' song.

When this world makes you crazy
And you've taken all you can bear
You call me up
Because you know I'll be there