MND NZ Community Survey: tell us how we’re doing

Motor Neurone Disease NZ has launched a community survey to identify what our community wants and needs from our organisation, what you think we're doing well and what you think we could do better.

Please have your say

Your voice is important to us, so we hope you will share your unique experiences. The results will inform our strategic planning and our organisation's development. When we last did this in 2018 our community’s input was very impactful in informing our direction.

Be in to win

You can choose to leave your details to enter the draw for one of five $100 Prezzy cards at the end of the survey. Your personal details will be removed from your completed survey to keep your responses anonymous.  

Completion time

The survey is very comprehensive and will take about 25 minutes to complete. We understand this may be challenging for some, but you can complete it in small chunks. You can close out of the survey and come back in to complete it later and your progress will automatically be saved.

Didn’t receive the survey?

If you or your loved one is a current or past client of MND NZ you should receive an email with the link to the survey by Wednesday 01 April. Please let us know if you do not receive this.  

Health professionals

All health professionals on our database will also receive an email with a survey link. The health professionals’ survey should take five to ten minutes to complete. If you are a health professional with a connection to MND and you haven't received this survey please let us know.

Closing date

All surveys will be open from Wednesday 01 April until Friday 24 April. 

Research company

We have once again commissioned the independent research company Point and Associates to analyse the feedback and prepare a report. They are a widely respected research company, have a long history of working in the health and social sectors, and are a long-standing provider to the New Zealand government. This work is being funded by a generous grant from a family trust.

Any questions?

If you have any questions about this survey, see our FAQ section below or please email us.

Community Survey FAQs

Q 1: Why have I received this survey?

You are listed in our records as either a person living with MND; a carer or family member of someone with MND; a bereaved carer or family member; or a health professional who has a connection to MND NZ.

Q 2: What is this survey for?

To identify what our community wants and needs from our organisation, what you think we're doing well and what you think we could do better.

Q 3: What will you do with my responses to this survey?

They will be analysed and collated into a report by Point and Associates. The outcomes of this report will be used to inform MND NZ strategic planning, continuous improvement of our services, and to ensure we provide what our community wants and needs. A summary will be shared directly with our community on completion. Your responses will help inform what we do in the future.

Q 4: Are my responses anonymous?

Yes, your responses are anonymous. Your privacy is very important to us. Please see below for our privacy statement.

Your privacy and your rights

• Participation is voluntary.
• You do not have to provide any identifying information.
• Your responses will be combined with others and will not be linked back to you.
• Data is collected and stored in accordance with the New Zealand Privacy Act 2020 by a third party (point.co.nz).
• All information will be securely stored in a Microsoft Enterprise, multifactor authorised system and will only be used for reporting, strategy development and service-improvement purposes by Motor Neurone Disease NZ.

Q 5: Why can't I get back into my survey and complete it?

You must complete the survey on the same device you started it on.

Q 5: Who is Point and Associates?

An independent research company. Point and Associates have created the survey with our questions. They will receive and analyse the feedback then prepare a report. They are a widely respected research company, have a long history of working in the health and social sectors, and are a long-standing provider to the New Zealand government. This work is funded by a grant from a generous family trust.

Q 6: Do I have to answer all the survey questions?

No, you can choose to skip over questions if you don’t wish to answer them. However, we would be grateful if you could answer as many as possible.

Q 7: How long will it take me to complete the survey?

The survey should take about 25 mins to complete. The health professionals survey will only take five to ten minutes. The survey can be completed in small chunks – your answers will be saved when you close out of it so you can go back in and complete it later.  

Q 8: Why doesn't my link get me into the survey?

If someone else in your household has already completed the same survey that you have been sent, you must use a different device to complete this. If not, email us.

Q 9: How do I enter the prize draw?

You can choose to input your details to enter the draw for one of five $100 Prezzy cards at the end of the survey. Your personal details will be removed from your completed survey to keep your responses anonymous.

Q 10: How is this survey different to the Insight Research Study questions we answered in 2025?

This survey is focused on your experiences of the Motor Neurone Disease New Zealand support service and other work we do. We want to ensure that we are providing the support and services that our community needs and wants. It is your opportunity to tell us what we are doing well and what we can do better.

The Insight Research Study was research into the realities of living with MND and the journey you experience outside of Motor Neurone Disease New Zealand.