Linda Perry's granddaughter Bella lives with Rett Syndrome. Photo / Linda Perry
Linda Perry's granddaughter Bella lives with Rett Syndrome. Photo / Linda Perry
Aspecialist paediatric palliative care (PPC) doctor says New Zealand is falling behind other nations in its care of terminally ill children and the Government must step up to help.
Dr Amanda Evans is one of two PPC specialists in Aotearoa and the only fulltime worker. She runs Rei Kōtuku, a Wellington charity founded to provide specialised PPC for tamariki (children) aged 24 weeks to 19 years.
Rei Kōtuku works alongside GPs and hospices in the Wellington region to assist children and their families as they fight terminal illnesses - but to provide the best level of care, they need more money.
An anonymous donor privately funds the charity but that funding will only last until April 2025, so if the Government doesn’t step in, the service will be forced to close.
“There’s absolutely no after-hours service funded in New Zealand for paediatric palliative care,” Evans told the Herald.
Rei Kōtuku CEO and paediatric palliative care specialist Dr Amanda Evans (right) and paediatric palliative care clinical nurse specialist Mary Bond. Photo / Peta Mazey
“We’ve provided 90 hours of after-hour care for free, unpaid, in the last three months and we just do it because we really believe that it’s important.”
A study of PPC in 2021 placed New Zealand at level four - which Evans explained meant that the care was in line with other developed nations. However, two years on, she says the standard has slipped to level two - which puts Aotearoa on a par with developing nations like Ethiopia and Cameroon.
Evans puts this slip down to specialists leaving the force and an increase in the number of patients who need the service - plus a lack of funding.
“The need is increasing, but there’s been no increase in funding since, I think, about a decade.”
The Government funds one PPC facility in the entirety of New Zealand, at Starship Hospital, and Evans says the postcode lottery is not good enough.
“At the moment it’s still very patchy. I think if you happen to live in Wellington and meet us, you have a great service but if you live in Timaru, people will do the absolute best they can but it’s a bit of luck of the draw.”
Families ‘disgusted’ by lack of funding
Families who have used Rei Kōtuku’s services say it is “disgusting” that the Government doesn’t fund them and it would be a tragedy to lose Evans’ expertise if the service is forced to close.
Oliver and Ray Gazley’s daughter Jemima died in October 2021 at the age of 15 after being diagnosed with a rare and inoperable brain tumour. Her father told the Herald the service Rei Kōtuku provided was incomparable.
“It’s not something you want to be good at, but Amanda is and so is her team and that’s the incredible part of it. They gave Jemima a voice, a voice that perhaps we had no idea about. They let her lead the way on how she was treated and how she navigated through her palliative care.”
15-year-old Jemima Gazley died in October 2021.
Ray Gazley said it was “absolutely sickening” that the Government does not equitably fund paediatric palliative care.
“Children die all over New Zealand. They’re not just in Auckland. it’s sickening to think that’s the case and don’t get me wrong, I think hospices do an incredible job and I think they are great but they’re not designed to cater for kids, you know, and I think that’s what Amanda does.”
Gazley said the “scariest thing” was the idea that if Evans cannot get funding for her service, she may leave for another country.
“She gets you right through and we’re gonna lose that. It’ll be gone. We won’t have that person anymore, and that will be the saddest thing for so many families.
Another family who rely on Rei Kōtuku is the Perrys.
Linda Perry’s granddaughter Bella has Rett Syndrome - a rare genetic mutation that affects brain development.
Linda Perry's granddaughter Bella. Photo / Linda Perry
She told the Herald Evans and her team have been “angels” in helping care for her granddaughter.
“This service is just absolutely bloody amazing, to be quite honest. They are the most beautiful women I’ve ever met in my life. They’ve become our whānau.”
Perry said she could not imagine what her life would look like without the care of Rei Kōtuku and said the Government must step in to ensure the service can continue.
“Fund this service because they are essential to our children. We need them, and we need more of them.”
In 2012, a report was released that issued several recommendations to ensure that PPC in New Zealand could be an integrated part of the health system. The Guidance for Integrated Palliative Care Services in New Zealand report called for the role of the Starship Palliative Care ward to be extended to that of a national co-ordinator for services across the country and that a network of co-ordinators in the now-disestablished District Health Board (DHB) link the services together.
It also called for a PPC network to be created and equitable Government funding to be established across the country.
To date, Evans says only a handful of recommendations in the Guidance report have been met.
One of these was establishing a paediatric palliative care network - but Evans says the network is still very patchy across Aotearoa, with no set standard of care.
“I think what happened with that document was there was a lot of work and resources that went into it, but then there was never any funding to implement the changes. So it just fell by the wayside and it’s been sitting there since 2012.”
Minister of Health Dr Shane Reti said he understood the national palliative care network had been established, when questioned by the Herald as to the priority of PPC.
Reti expressed his deepest sympathies to families living with children with terminal illnesses and said he intends to take advice from experts in the field on funding.
“It’s really important to me that the care received by those children and their families is of high quality,” he said.
“In August last year, a National Palliative Care Steering Group was established. I will be taking advice on the work of this steering group and its recommendations around addressing concerns, including support for children.”
Evans is the co-chair of the steering group and told the Herald she remains hopeful the Government will step up and fund what she sees as a crucial part of the health system.
“I do remain optimistic that we will get funding by the end of the year or the beginning of next year. I am extremely hopeful.”
Vita Molyneux is a Wellington-based journalist who covers breaking news and stories from the capital. She has been a journalist since 2018 and joined the Herald in 2021.
