A. Rei Kōtuku is a charity that has been commenced to provide specialised paediatric palliative care to babies, tamariki and rangatahi and their whānau in the Central Region who have palliative care needs.

A. 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’.

A. Rei Kōtuku is a team of specialists (medical, nursing and psychology) trained in assessing and providing specialist advice and recommendations on how to care for children with serious illnesses in a holistic and compassionate way that meets their needs, wherever they are.

A. The team currently has a paediatrician and palliative care specialist Dr. Amanda Evans, clinical nurse manager Mary Bond, and is looking to recruit team members to provide emotional and cultural support.

A. Rei Kōtuku has a board of trustees Brendan Clare, Ben Irving, Marsha Marshall, and Amanda Evans.

The Board also has positions for advisors 2 x Māori Advisors Dr. Tess Moeke-Maxwell and one in recruitment, as well as a Parent Advisor position.

A. Rei Kōtuku is based in central Wellington but will be able to take referrals from anywhere in the Central Region. Rei Kōtuku can see children and families in outpatient clinics, in their homes, at school, their marae, or in hospital and critical care.

A. Our logo was drawn by the amazing Martha (5yr old from Cloud Workshop), and designed by Dexter. All the other pictures were drawn our children. We asked them “if you were sick what would make you feel better?” and that is what they told us!

A. We will see a wide range of patients with serious illnesses including antenatal consults with parents who are carrying babies with a serious illness, children with cancer who may have a poor prognosis or have symptoms they need help managing, those with rare disorders with symptoms, genetic disorders, neurological conditions, heart disease and anyone who is vulnerable that needs extra support from a physical, psychological, social or spiritual need.

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

A. Referrals will come from health providers – GP’s, Specialists or specialist nurses. If you are a parent and keen to see us please discuss referral with your health provider.

A. No, your primary healthcare team (GP, paediatrician, or specialists) will be in charge of your care and we will provide recommendations that are individualised for the child and family and collaborate closely with your primary healthcare team.

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

A. It depends. Sometimes we can see someone for one visit and provide recommendations, review these and if the child is going well we can discharge. Other times we may be involved in and out of whanau life for years. We may also support the primary health team from afar so only need one visit and know that we are in the background to provide the primary care team advice.

Our care is individualised to the child, whanau, and the care team surrounding them to match their needs so this means everyone will be unique in what they require from us.

A. Yes we do. We know how important it is that siblings are supported, so as part of our assessment and recommendations will be planned for the sibling. We can support parents to support them by giving advice, and we can also work with our colleagues (therapists and external agencies) if this is more appropriate.

A. Yes we are.

A. Yes we are. Dr Amanda Evans is a specialist in Paediatric Palliative Care and one of only three specialists in Aotearoa (the other two being in Auckland). She trained in Auckland and spent 18 months in Australia working as a fellow and staff specialist before moving back 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.

A. Yes there is. 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.

A. We have been lucky enough to receive some private funding to start this small service as a pilot. It is enough to pay for a small team. We are realistic in what we can provide with our small amount of resources and although we don’t want to let people down, if we stretch our service too much we end up doing people a disservice in the long run.

Please know we are actively lobbying the Ministry of Health and the government to fund a national service which will mean more children and families will have access to this service across Aōtearoa.

A. We are so sorry as we know this is the toughest journey that you would have to face. We do have lots of friendly relationships with external providers around the country who can support you emotionally or provide telehealth. Please see our list of external providers on our website.

We are also happy for your health provider to contact us for some advice if there are specific questions.

A. We currently do not. However, there may be exceptions for times 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 and we plan who you should contact when you need to.

A. Because the Rei Kōtuku are experts in grief and loss for children, we will be able to provide advice to unwell or widowed parents on how to support their children if a parent is unwell, dying, or died. We can also advise schools on how to care for bereaved children and help with back-to-school planning, as well as recommendations to health providers such as hospice, paediatricians, and GPs.

Rei Kōtuku have good relationships with external agencies and therapists who can provide therapeutic support for the bereaved child and are happy to refer if required.

A. 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 are working hard to get funding from Ministry of Health to provide this essential service.

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

Alongside Starship Children’s Health PPC Service, we have been assured by Minister Edmonds that this is a priority for the next few years.