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.
Health Minister Simeon Brown this morning announced that $15.5 million from Budget 2026 would be spent on two dedicated specialist teams - one each in the North and South islands. The new services would roll out from the middle of next year.
At present, Health New Zealand funds just one specialist paediatric palliative care physician, based at Auckland's Starship Children's Hospital.
Brown said children with serious illnesses and their families would be better supported with compassionate, specialist paediatric palliative care closer to home.
About 300 children die each year from life-threatening or life-limiting conditions, and up to 3000 may require paediatric palliative care support.
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.
"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."
The grief hadn't become any easier with time, she said.
"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."
They would travel the country and work alongside health professionals, supporting and training local care teams so children can receive the best possible care in their homes and communities, the Health Minister said today.
"Importantly, the funding also provides for national service coordination and one registrar training position each year in specialist paediatric palliative care, helping build the workforce for the future.
“Our focus is on reducing the emotional, physical, and financial strain on children and their families as much as possible. This investment will allow more children to be cared for at home, surrounded by their families and loved ones, rather than spending long periods in hospital.”
In addition, Wellington-based charity Rei Kōtuku would be funded to bridge the gap until a 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."
- additional reporting by Allied Media
This story was first published on rnz.co.nz |  |
