Updated Best Practice Recommendations released for MND care in Aotearoa New Zealand

Motor Neurone Disease New Zealand (MND NZ) has released the second edition of the Best Practice Recommendations for the Care of People with MND.

Originally published in 2022, the recommendations were developed by a group of New Zealand clinicians with expertise in MND care. They outline the standard of care that MND specialists agree should be available to people diagnosed with MND across Aotearoa New Zealand.

The recommendations were created in response to concerns raised by the MND community about variation in access to services and support across the country. They represent the first step in a broader programme of work aimed at improving consistency of care and health outcomes for people living with MND and their whānau.

Importantly, the recommendations are tailored to the New Zealand health context. They recognise the importance of Te Tiriti o Waitangi and are informed by Te Whare Tapa Whā, reflecting a holistic approach to health and wellbeing.

What's new in the second edition?

The 2026 update includes a focused review of selected sections to ensure the document remains relevant and practical for health professionals. Updates include:

• revised information on riluzole
• an updated New Zealand Red Flags Tool for GPs
• refreshed guidance on genetics
• verification and updating of web links and references

This update was not a comprehensive review of the entire document. The underlying recommendations and framework remain unchanged. A full review of the document is planned for completion by 30 June 2029.

Supporting high-quality, consistent care

The Best Practice Recommendations are a clinical guidance document designed to support health professionals involved in the care of people with MND. They have been peer reviewed and endorsed by the Neurological Association of New Zealand (NANZ), the Thoracic Society of Australia and New Zealand (TSANZ), and the Australia and New Zealand Society of Palliative Medicine (ANZSPM) Aotearoa.

While the recommendations describe agreed standards of care, they are not prescriptive. Every person experiences MND differently, and care should always be tailored to individual needs, circumstances, and preferences.

If you are living with MND and have questions or concerns about your care, please discuss these with your healthcare team.

Acknowledging the Clinical Working Group

MND NZ acknowledges the significant contribution of the Motor Neurone Disease Clinical Working Group, whose expertise and commitment made these recommendations possible.

The group includes 18 health professionals from across Aotearoa New Zealand who share a commitment to improving care and support for people living with MND and their whānau. The group was co-chaired by Claire Reilly and Chris Drennan in 2020, and by Claire Reilly and Alan Stanley in 2021.

We are grateful for the time, knowledge, and leadership they have contributed to this important work.

Read the Best Practice Recommendations (Second Edition):