Source: Radio New Zealand
Families who have lost a child say new funding from the government into paediatric palliative care will mean others won’t have to do it alone.
This morning, health minister Simeon Brown announced $15.5 million dollars from Budget 2026 for two dedicated specialist teams, one each in the North and South islands.
Right now, Health New Zealand funds just one specialist paediatric palliative care physician based at Starship Children’s Hospital.
But 300 children die in New Zealand each year, and up to 3000 will require palliative care.
Nicola Swan lost her son eight yeas ago. James was born a healthy baby, but aged two, he began to develop a condition similar to motor-neuron disease – although the specifics remain undiagnosed.
Nicola Swan lost her son eight yeas ago when he was five years old. RNZ / Mark Papalii
“He rapidly lost all his abilities,” she said. “He was tube-fed, wheelchair, he had developed epilepsy – lots of seizures – till he passed away at five.”
She explained they had incredible medical care, but there was no specialist paediatric palliative care available to them.
“Having someone who has the knowledge […] when it comes to pain, knowing the medications that we can be fighting for, or that he shouldn’t be on, or should be on that’s going to give him a level of relief… doctors didn’t all know what that was.”
Nicola said the grief hadn’t become any easier with time.
“I personally think it gets harder. So to know that there is a wrap-around support in every aspect for these families now in New Zealand, it’s heart-warming. They’re not going to be alone.”
Brown explained they would be hiring a number of specialist staff – from overseas, if needed, he said – and creating a training position for a new specialist each year.
RNZ / Mark Papalii
The team would travel the country, providing support in the home.
In addition, Wellington-based charity Rei Kōtuku would be funded to bridge the gap until the new service was up and running in mid-2028.
The charity had been providing care free of charge across the lower North Island since 2023.
Dr Amanda Evans, co-founder and clinical director, said they had cared for 62 children at the end of their lives, from unborn babies to teenagers.
She had this message for children and families who would be affected in the future: “Firstly, I am just so sorry that you need to know that palliative care exists in the first place.”
“But I can promise you this – we will ensure that this means that you will not have to go through this alone. You will have access to a specialist now, to work alongside your local team.”
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– Published by EveningReport.nz and AsiaPacificReport.nz, see: MIL OSI in partnership with Radio New Zealand