In late 2025 we gathered feedback from people accessing our services via an online survey. Your feedback highlights both our strengths as well as some opportunities for improvement. We are committed to continuous quality improvement and thank you for taking the time to provide us with your insights and perspectives.
131 people living with MND, 65 carers or family members and 1 other completed the survey. Prior to completing the survey, 41% of respondents had been accessing our services for the past 0-12 months, 45% between 1-5 years and 14% had been accessing our services for more than 5 years.
Our strengths
You told us that we:
- Respond to calls and emails in a timely manner (89%)
- Take the time to understand individual needs and situations (93%)
- Provide support and information as it is needed (95%)
- Provide a good range of equipment from FlexEquip (88%) and equipment is of a good standard (94%)
- Keep you informed about MND and events in our newsletters (77%)
A number of comments in the free text section told us that:
- Support groups are important for people living with MND and carers.
- Our staff are our biggest asset. They are kind, knowledgeable and hardworking.
Many comments referred to staff members by name, and we have ensured that these messages of thanks have been passed onto all staff who have been mentioned.
“The provision of MND Support Groups has been invaluable for networking and learning from other MND sufferers and carers”
Opportunities for improvement
It was evident in some of the responses that we we can do more in relation to ensuring members of the MND community understand who we are.
Some key areas where people would like to know more:
- How our services work alongside other health and community care professionals involved in a person’s MND care
- How we are different to other organizations like, MND Australia.
54% of respondents told us they have not accessed MND NSW education or carer support programs. Raising awareness about these important programs is an opportunity for improvement we will explore.
Other opportunities for improvement identified in the free text comment section include:
- Continuing/expanding service availability for people living in rural and remote areas
- Sharing more information about our advocacy efforts as well as how we work with MND Australia to support policy change, notably around My Aged Care
- Raising awareness about where to find information about research and clinical trials.
“I presume MND NSW probably has more to offer that we didn’t go back and checkout”
Overall satisfaction with our services
- 89% of respondents told us they were satisfied with our overall service
- 7% told us they were neither satisfied nor dissatisfied
- 3% told us they were either somewhat or very dissatisfied
- 1% responded N/A.
“All staff and people I have dealt with have provided excellent support and are a wealth of knowledge.”
How to provide feedback or make a complaint
We regularly review our incident and complaint management system to inform service delivery improvements.
You can provide feedback to us at any time. We have a ‘no wrong door approach’ to receiving complaints and feedback, you can:
- Contact any MND NSW staff member directly via phone or email
- Phone reception (02) 8877 0999 or Info Line 1800 777 175
- Write to us at MND NSW, Locked Bag 5005 Gladesville, NSW 1675
- Email
This email address is being protected from spambots. You need JavaScript enabled to view it. - Submit a feedback form - Service Quality
We also welcome anonymous complaints; they are actioned as rigorously as any other.
You can submit an anonymous complaint by writing to MND NSW, Locked Bag 5005, Gladesville, NSW 1675.
“I have been most impressed with the assistance I have received to date. I did some of the Walk last Sunday with my family. Everyone had an especially good time.”
Thank you to everyone who took part in the survey. We will continue to work towards maintaining our strengths and exploring opportunities for improvement. If you would like to speak with someone about the survey or the results shared in this article, please contact Info Line on 1800 777 175 or
