The Children’s Commissioner describes the current situation as “untenable, inequitable and inadequate”, writes Anna Rawhiti-Connell in today’s extract from The Bulletin.
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‘Untenable, inequitable and inadequate’
Earlier this week, RNZ’s Anusha Bradley reported that the country’s only publicly funded paediatric palliative care specialist is on extended leave. As Bradley reported, Starship Hospital informed senior doctors in February that their sole specialist would be unavailable for two months until April. Despite attempts to find a replacement, one has not been found. Children’s Commissioner Dr Claire Achmad told RNZ that the current situation is “untenable, inequitable and inadequate”. The mother of a child who died from a brain tumour in November while under Starship’s care told RNZ that the small team meant help was not available when they needed it most. During the last week of her child’s life, the family “had to call the ambulance out quite a lot in his last week of life, especially over his last 10 hours of life,” and he “had a very distressing 10 hours of life in those final hours.”
3000 children need palliative care each year, 75% do not get it
In November last year, a report by national child palliative care service, Rei Kōtuku, a pilot programme providing paediatric palliative care for children and adolescents in the North Island from Wellington to Hawke’s Bay found 3000 children needed palliative care each year, but 75% do not get it. The World Health Organisation estimates it is necessary to provide palliative care services to 20 million people every year around the world, and 9% of the patients who need palliative care are children. A report co-authored by Dr Gemma Aburn from the University of Auckland’s School of Nursing in November last year revealed that children who are very ill or at the end of life are missing out on services that could improve their quality of life. Auburn said, “While Aotearoa recognised the value of paediatric palliative care in the late 1990s, more than 20 years on, there has been a woeful lack of policy and service development.”
Health New Zealand claims under scrutiny
Bradley has since reported that “Health New Zealand’s commitment to bolstering specialist palliative care for children has come under scrutiny after promises it was actively recruiting more staff, despite not advertising any jobs.” Health minister Simeon Brown has admitted Health New Zealand’s claim – and the job advert it eventually posted – were inaccurate, and says he has made his concerns clear to the agency.
‘Finding palliative care for our baby in a ‘luck of the draw’ health system’
This morning on The Spinoff, Emma Gilkison reflects on the short life of her son Jesús Valentino, who died with the people who loved him best, comfortably and with the care he needed. This happened in spite of, not because of, the hospital system. Gilkison and her partner learned their son had a usually fatal heart condition known as ectopia cordis and were told their son would die at birth or shortly after when Gilkison was five months pregnant. In meetings leading up to the birth of her son in 2014, Gilkison said a palliative care doctor was supposed to come along to one of these meetings, but they never saw them. Eventually, a priest they knew introduced them to a paediatric surgeon who offered to volunteer his time and be on call when their baby was born.
