There is only one publicly funded paediatric palliative care service in the country. (File image) Photo: 123rf
- Dying children are missing out on the "basic right" to care, research shows.
- Starship has the only publicly funded paediatric palliative care service in the country.
- A 12-year-old plan for a nationwide service went nowhere.
- About 350 children die of serious illnesses every year.
- The number of children with life-limiting illnesses is set to triple in the next decade.
Terminally ill children and their families living in many regions are suffering due to the lack of specialist paediatric palliative care services nationwide.
New research published in The New Zealand Medical Journal on Friday details the impact of "inequitable and vastly inadequate" care.
There is currently only one permanent, publicly funded specialist palliative care service in the country, based at Starship Children's Hospital in Auckland.
"The service remains small and vulnerable to workforce pressures," the Auckland University researchers wrote.
"This vulnerability has recently been highlighted by a long standing pioneer in paediatric palliative care leaving the service to work overseas.
"Furthermore, given the lack of funding of training positions and education opportunities in paediatric palliative care, there remains only a very small number of trained and skilled specialists across medical, nursing and allied health."
A report commissioned by the Ministry of Health in 2012 recommended the establishment of a nationwide service supported by Starship, with funded clinicans in each district.
"Regardless of the clearly identified need and the outlining of a robust implementation plan, no further investment in paediatric palliative care was forthcoming."
Last year, a group of Wellington-based clinicians set up a specialist paediatric palliative care service in the capital, which is funded entirely by donations.
Researchers said the size of the trained workforce was "staggeringly inadequate" to meet the needs of the current population of children with serious illnesses, let alone the expected increase in the future.
"This means that many children and whānau are missing out on their basic right to this essential care.
"The consequences of this avoidable poor care for children are far reaching and must be considered unacceptable."
Each year, about 350 children (aged 19 and under) die of serious illness in New Zealand, and a much larger group could benefit from specialist palliative care.
International research suggested that due to advances in medical technology, the number of children living with life-limiting illness was expected to increase threefold within 10 years.
Researchers said delivery and partnership with Māori health providers and iwi to ensure services meet the needs of tamariki Māori and their whānau.
"At a minimum, every child with a serious illness and their whānau, across the motu, should be receiving quality, evidence-based and compassionate generalist paediatric palliative care from their primary healthcare team."
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