The tragedy of babies and children affected by life-limiting disease is a tough reality, and all too common among those with rare diseases that have few treatment options. Care for these children and their families has been greatly improved in New Zealand over recent years with the establishment of a paediatric clinical care network to extend the outreach and expertise of the specialist paediatric palliative care team at Starship hospital in Auckland, across the country. The network published a set of guidelines on the Starship Children’s Health website in 2015 to assist those involved in this care.
LDNZ was a prime mover in the work to get the paediatric palliative care network set up. We had identified a number of cases involving a lack of quality care at this difficult time, and our advocacy with the Health & Disability Commissioner and the Ministry of Health, resulted in positive moves by the Ministry and the Paediatric Society to develop this network, along with a number of networks for other specific conditions. It is a proud achievement to have worked on this issue for over 10 years and now see the positive results of better care for families at this most challenging time.