Our Work
Our Achievements and Success
Some our achievements and successes include:
- New Zealand’s child cancer services achieve the same outcomes as the best services in the world. New Zealand’s services achieve equity of outcomes for children irrespective of ethnicity, socioeconomic status or where they live
- New Zealand’s child cancer services and model of care reflect international best practice recommendations
- Children receive consistent, safe and high-quality care that meets their needs and values irrespective of their ethnicity, socioeconomic status or where they live
- There is a nationally standardised and agreed pathway of care for children with cancer in New Zealand
- Children have as much treatment as close to home as possible within the bounds of effectiveness and safety
- Formalised shared care arrangements are in place between Specialist and Shared Care Centres, and these are monitored and reviewed regularly
- Established and strong partnerships with key stakeholders
“The National Child Cancer Network shows New Zealand’s outcome for childhood cancers are pretty much better than anywhere else in the world for comparable countries. It’s a gold standard in terms of its structure, access to clinical trials, patient support and standardisation of protocols.”
Christopher Jackson, Professor of Medical Oncology and Director at Union for International Cancer Control
Our areas of focus
To deliver our vision and purpose, we’ve focused our work on these areas:
Coordinate the National Model of Care
Coordinate the National Model of Care and provide clinical leadership and oversight of child cancer services. This includes managing shared care agreements, maintaining national guidelines and protocols, championing consistent service delivery, and supporting workforce planning and development.
Lead System and Service Level Improvements
Lead System and Service Level Improvements to support continuous quality improvement, service development and implementation of best practice. This is achieved through fostering collaboration among stakeholders and using evidence and data to inform best-practice child cancer care.
Improve Patient and Whānau Experience
Improve Patient and Whānau Experience across the continuum of child cancer care and support.
Provide National Policy Advice and Advocacy
Provide National Policy Advice and Advocacy on key issues relevant to child cancer and child cancer services.
Our work
Our programme of work is wide ranging, and we work with partners across the child cancer continuum to deliver our programme of work and achieve our vision. Below are some of our current key programmes of work and projects.
Our annual work plan outlines our full programme of work – click here to see a snapshot of some of our work planned for 2024/25
The New Zealand Children's Cancer Registry (NZCCR)
The New Zealand Children’s Cancer Registry (NZCCR) collects comprehensive data on all childhood cancer diagnoses since 2000. Managed by the National Child Cancer Network, and operating with ethical approval as an opt-out registry, it enables crucial analysis of health outcomes, identifies disparities, tracks survival rates, and benchmarks New Zealand’s performance internationally. Integrated with the health system and the Late Effects Assessment Programme (LEAP-IT) database, the NZCCR supports research, policy development, service planning, and clinical practice, ensuring comprehensive and accurate data for improving outcomes for children with cancer
Korero Pono: Patient & Whanau Experience Project
A positive patient experience is recognised as an important indicator of healthcare service quality. Measuring patient experience alongside clinical effectiveness and patient safety outcomes provides a more comprehensive picture of service provision and can highlight areas for improvement.
The Patient & Whānau Experience Project aims to improve our understanding of the patient and whānau experience of child cancer services and to ensure equity of care and experience for all children living with cancer in Aotearoa, New Zealand and their whānau. The project focuses on understanding whānau experiences and placing their voices at the centre of future service development.
National Planning & Protocols
The NCCN facilitates the National Paediatric Oncologists and Haematologists forum each year. The purpose of the National Planning & Protocols forum is to agree treatment and management options for paediatric cancer conditions in New Zealand, ensuring consistent service delivery and best practice across the country, and provide a forum for national planning and the discussion of critical issues.
The National Child Cancer Network has developed the national guidelines for the supportive care and management of children with cancer throughout New Zealand. They provide guidance for health care professionals on the delivery of consistent, high-quality, evidenced based care for child cancer patients and aim to ensure consistent care is delivered nationally. The guidelines cover more than 200 topics, ranging from the management of fever, through to accessing portacaths, and are accessed over 4,500 times every month. Guidelines are reviewed on a rolling three-yearly cycle and users are encouraged to provide online feedback about the utility and applicability of the guidelines as they use them.
Nutrition Project
Cancer services are delivered from two Specialist Child Cancer Centres in Aotearoa – Starship Blood and Cancer Centre in Auckland and the Children’s Haematology/Oncology Centre in Christchurch. NCCN has service level agreements with 14 shared centres that provide follow-up and ongoing surveillance under the guidance of the two lead providers.
The National Child Cancer Network is responsible for ensuring that Service Agreements are in place between the two Specialist Child Cancer Centres in Auckland and Christchurch, and the fourteen Shared Care Centres located across the country. This is done by reviewing how services work together to provide seamless care for children with cancer .This includes confirming and documenting that guidelines, services and standards of care are in place; describing local approaches to service delivery; and identifying service and professional development needs and goals.
In addition to the work and support for services in Aotearoa, the National Child Cancer Network also supports services delivered in the Pacific Region. This includes the Cook Islands, Niue, Tokelau, Tuvalu, Fiji, Tonga, Kiribati, Samoa and Vanuatu.
The Network supports the development of child cancer services in the Pacific, to ensure children with cancer in the Pacific access quality cancer care. This is achieved through clinical twinning programmes, the overseas referral scheme, visiting medical specialists and supporting and strengthening workforce capacity in the Pacific, through training and education.
Nutrition Project
The Nutrition Project aims to standardise and coordinate nutrition support for children with cancer across New Zealand. By developing evidence-based guidelines, the project will ensure consistent, optimal care, addressing the widespread issue of malnutrition during a child’s cancer journey. Despite advances in cancer treatment and growing evidence for nutrition’s role in survival, significant variations in practice persist. This project will bridge the gap between research and clinical application, improving nutritional outcomes for children with cancer.
The National Child Cancer Network (NCCN) supports a series of working groups, involving a diverse range of health and other professionals involved in service delivery, across the continuum of child cancer care. The working groups provide expert advice, recommendations and action plans on specific areas of service delivery with a focus on equitable access to consistent, safe, high-quality, child-and- whānau-centred care.
The current Working Groups are:
- Late Effects Assessment Programme Working Group
The Late Effects Assessment Programme (LEAP) provides long-term assessment of the medical, psychological and educational needs of children and young people who have completed cancer treatment and are at low risk of relapse. Cancer treatment in childhood often involves chemotherapy, radiation, and surgery, which can have long-term effects on growth and development. The LEAP programme is delivered in Auckland, Wellington, and Christchurch, as an extension to the routine follow-up care provided to child cancer survivors by paediatric oncology clinics.
The purpose of the Working Group is to monitor the delivery of the Late Effects Assessment Programme (LEAP) and provide recommendations for improvements. For more information on the LEAP refer to Link to LEAP page (see below)
- Erin Kavanagh, Nurse Practitioner, Paediatric Haematology Oncology, Starship Blood and Cancer Centre, Auckland (Chair of the Group)
- New Zealand Children’s Cancer Registry (NZCCR) Working Group – The purpose of the Working Group is to monitor the collection and reporting of child cancer data in New Zealand. Its goal is to ensure high-quality data is available for guiding clinical practices, research, informing child cancer service planning, and evaluating health outcomes for children with cancer. For more information on the NZCCR refer to Link to NZCCR page (see below)
- Andrew Wood, Paediatric Oncologist, Starship Blood and Cancer Centre, Auckland (Chair of the Group)
- Pacific Working Group – The purpose of the Working Group is to enhance access to quality cancer care for children with cancer in the Pacific by strengthening data collection, supporting clinical and public education, and efficient resource utilisation. For more information on the Pacific Working Group refer to Link to Work in the Pacific page (see below)
- Siobhan Cross, Paediatric Haematologist, Children’s Haematology and Oncology Centre, Christchurch (Chair of the Group)
- Nutrition Project Working Group – The purpose of the Nutrition Project Working Group is to standardise and coordinate the provision of nutrition support (screening, assessment, interventions, and monitoring) for children with cancer in New Zealand. This will enable consistent and evidence-based nutrition care for all children regardless of where they live in New Zealand. For more information on the Nutrition Project refer to Link to Work in the Nutrition Project page (see below)
- Amy Lovell, Senior Lecturer, Paediatric NZRD, Starship Blood and Cancer Centre, Auckland (Chair of the Group)
For more information or to join one of the working groups, please contact childcancernetwork@adhb.govt.nz