Frequently Asked Questions

About us

  • Paediatric palliative care is a medical specialty that cares for children with serious illness who may die during childhood. Paediatric palliative care practitioners are experts at pain and symptom management for children.

  • Rei Kōtuku is a team of specialists (medical, nursing and psychology) trained in caring for children with serious illnesses in a way that meets their physical, emotional and cultural needs.

  • We were gifted the name by Dr Tess Moeke-Maxwell (Ngāi Tai Ki Tāmaki Makaurau and Ngāti Porou) and Whaea Whio Hansen (Ngāpuhi, Tainui, Ngāi te Rangi, Te Arawa and Waikato Tainui). It means ‘rare and precious child’.

  • Yes

  • Yes we are.

    Dr Amanda Evans is a specialist in Paediatric Palliative Care and one of only 2 specialists in Aotearoa (the other being in Auckland). Amanda trained in Auckland and spent 18 months in Australia working as a fellow and staff specialist before returning to Wellington to work as a palliative care specialist at Mary Potter Hospice for the last 2.5 years.

    Mary Bond has many decades of experience in neonates, palliative care, and paediatrics and is a well-respected senior nurse in Wellington. She is currently finishing her Masters degree.

  • We are currently reliant on donor funds with no assistance from the government, despite our belief that children around the country should have a right to this specialist palliative care if they need it.

    We are working hard to secure long-term funding from Ministry of Health and Health NZ to provide this essential service.

Location

  • Rei Kōtuku is based in central Wellington and can take referrals from anywhere in the Central Region — Hawkes Bay to Wellington. Rei Kōtuku can see children and families in outpatient clinics, in their homes, at school, their marae, or in hospital and critical care.


  • Yes. We work closely with the Starship Children’s Paediatric Palliative Care Service which is the other paediatric palliative care service in Aotearoa.

    We also work with nursing and allied health-led paediatric palliative care services in Hamilton (True Colours, and Rainbow Place) and Christchurch.

  • We've been lucky enough to receive private funding to pilot this service for three years. Their generous donation pays for our team to ensure our service is delivered without cost to the family.

    We are realistic in what we can provide with our small amount of resources.

    We are actively advocating on behalf of families to secure long-term government funding for a comprehensive national service which will mean more children and families will have access to this service across Aotearoa.

  • We have lots of friendly relationships with other providers around the country who can support you emotionally or provide tele-health support.

    We are also happy for your health provider to contact us for advice.

Referrals

  • We care for a wide range of patients with serious illnesses; including —

    • antenatal consults with parents who are carrying a baby/babies with a serious illness

    • children with cancer who may have a poor prognosis or have symptoms they need help managing

    • children with rare or genetic disorders, neurological conditions, heart disease

    • children who are vulnerable to illness that need extra support from a physical, psychological, social or spiritual need

    • children living with a terminal illness

  • We accept referrals for anyone with an antenatal diagnosis (around 24 weeks gestation), up to the age of 19.

  • Referrals are usually made by health providers such as GP’s, specialists or specialist nurses. If you are a parent and connect with us, please discuss a referral with your healthcare provider.

  • The team will triage the referral and discuss it with the referring party. We aim to make contact within 5 working days, but it may be sooner than that depending on the urgency.

  • We recognise that losing a child is one of the most painful things that can happen in people’s lives. Rei Kōtuku team provides grief and loss support from diagnosis to bereavement and stays involved as long as parents need. Support is based on individualised needs. As above we can also refer to colleagues for further support if required.

  • We provide some bereavement support to children who have lost their parents.

Care

  • No. The primary healthcare team (GP, paediatrician, and/or specialists) will continue be in charge of the child's care. We provide recommendations that are tailored for the child and family's needs. We collaborate closely with the primary healthcare team on what's best for the child.

  • Each child is different. We may see someone for one visit and provide recommendations, review these and if the child is well supported without additional input from us we can discharge them from our service.

    Other times we may be involved in a whānau's life for years.

    We can also support the primary health team from afar, which means we might only need one visit with a child, and their care team knows we are able to provide advice as requested.

    Our care is taoilored to the child, whānau, and their care team's unique needs.

  • Yes. As part of our assessment, recommendations will be made for any siblings. We can advise parents on how to support their other children, and work with other therapists and external agencies if this is appropriate.

  • We do not. However, there may be exceptions when your child is especially unwell. Please discuss this with your Rei Kōtuku team member. We also work with hospices, paediatricians, and paediatric community nurses to ensure there's someone to contact when you need to.