MND Insight Survey 2025 – your experience matters

Improving care, support, and advocacy for people with MND

Motor neurone disease (MND) is life-changing, affecting not only those diagnosed but also their whānau and support networks. The challenges can be overwhelming – from accessing healthcare and equipment to managing financial and emotional strain.

Yet, despite its profound impact, there is still so much we don’t know about how people experience MND in Aotearoa New Zealand. We need to understand what is working, where the gaps are, and how services can be improved.

That’s why Dr Natalie Gauld, a researcher and advocate living with MND since 2022, is leading the MND Insight Survey 2025—the most comprehensive study ever undertaken in New Zealand to better understand the realities of living with MND. Your insights will help shape the future of MND care and support.

This research is funded by the Health Research Council of New Zealand (HRC) and supported by Motor Neurone Disease NZ.

A personal message from Dr Natalie Gauld

— Dr. Natalie Gauld, Research Advisor & Best Practice Advocate

“Over the past few years, I’ve had the privilege of connecting with so many people in the MND community—individuals living with the disease, their family and whānau, and the health professionals who support them. Through these conversations, one thing has become abundantly clear: while we all experience MND in different ways, there are shared challenges that need to be better understood, and areas where change is long overdue.”

Read Natalie’s full message here

Associate Professor Stephen Buetow, a leading researcher in general practice and primary healthcare at the University of Auckland, provided a scientific review of the MND Insight Survey and has offered to join the research team. He highlights the significance of this study:

“Dr. Gauld’s landmark study will provide comprehensive insights into the unmet needs and experiences of people living with MND. It will help inform better support services and care strategies, ultimately enhancing the quality of life for those affected by this devastating condition. By taking part, you are contributing to a crucial body of evidence that will drive advocacy, funding, and improvements in care for people with MND and their families. Your voice matters in shaping a better future for the MND community in New Zealand.”

— Associate Professor Stephen Buetow
Faculty of Medical and Health Sciences, University of Auckland

What is research, and why is it important?

Research is the systematic study of a subject to discover or confirm facts, gain new insights, and find solutions to problems. In the case of MND, research can take many forms:

• Medical research focuses on understanding the causes of MND, potential treatments, and, ultimately, a cure.
• Clinical research looks at the effectiveness of different care approaches and medical interventions.
• Advocacy research (like the MND Insight Survey) identifies challenges people with MND face, what’s working well, and where improvements are needed in health and support services.

By participating in or supporting research, people with MND and their families play a vital role in shaping future care, influencing health policies, and improving access to services.

Motor neurone disease affects not only those diagnosed but also their family, whānau, and support networks. To ensure we understand the full impact of MND in New Zealand, we need to hear from as many people as possible who have lived experience of the disease—whether as patients or carers.

This survey is designed to capture the real-life challenges, experiences, and needs of those affected by MND. By participating, you will contribute to research that can improve services, guide advocacy efforts, and support funding applications to enhance MND care in New Zealand.

We are seeking responses from three key groups:

• People currently living with MND – share your experience with diagnosis, treatment, equipment, and daily challenges.
• Family/whānau carers of someone with MND (currently alive) – help us understand the impact on carers, the support available, and where improvements are needed.
• Family/whānau carers of someone who has passed away from MND (within the last two years) – provide insights on end-of-life care, challenges faced, and bereavement support.

Your responses are entirely anonymous, and every piece of feedback contributes to better advocacy, policy, and research for the MND community.

For more details on research and the MND Insight Survey, visit our FAQ page

Why take part?

A diagnosis of motor neurone disease brings significant challenges—not just for the person with MND, but also for their family, whānau, and carers. Every day, people affected by MND navigate a complex health system, access essential equipment and services, and adapt to changes in mobility, communication, and independence. Yet, despite the profound impact of the disease, there is still limited data on what is working well and what urgently needs to improve in New Zealand.

The MND Insight Survey 2025 aims to change that. By sharing your experiences, you will help build a clearer picture of where support is effective, where gaps exist, and what can be done to improve the quality of life for those living with MND and their carers. This research will provide evidence for advocacy, strengthening MND NZ’s ability to push for better services, funding, and policy improvements.

Support advocacy efforts – help shape the future for people with MND and their whānau.

• Strengthen research – your input will provide vital data for healthcare professionals and researchers.
• Make a difference – your experiences will help MND NZ advocate for better funding, care, and support.
• Improve MND services – identify what’s working and what needs to change.

Your privacy and ethics

This research has full ethics approval and meets academic standards.

Your responses are completely anonymous and confidential.

The findings will be used to advocate for better MND services, inform health professionals, and guide future research.

How to take the survey

You can choose the method that works best for you:

• Online (recommended) – click below to start. You can save your progress and return later.
• Paper copy – request a printed survey to be posted to you.
• Phone survey (for MND patients only) – if online or paper isn’t suitable, we can arrange a phone interview.

The survey is open for four weeks—your insights can help drive real change for people with MND.

Your experience matters – help us improve MND support in NZ

Your participation can make a real difference for the MND community.

Thank you for your time and contribution. Together, we can drive change.

Important: Please read before starting the survey

Before you begin the MND Insight Survey, you must read the Participant Information Sheet (PIS). This is a requirement from the ethics committee to ensure you fully understand the survey’s purpose, how your data will be used, and your rights as a participant.

The Participant Information Sheet explains:

• Why this survey matters – how it will support advocacy, healthcare, and research for people with MND.
• What participation involves – including how you can complete the survey.
• How your responses remain confidential – and will only be used for research.
  Your rights – participation is voluntary, and you can skip any questions you don’t wish to answer.
• The survey links are located on the last page of the document.