National MND Survey

What matters to you?

IMNDA along with MND Scotland have put together a national survey to find out what you feel is working, what isn’t, and how it can work better. Through this national survey, your responses will directly shape what we do, from research, to services, to campaigning over the coming years. We really appreciate your help with this.

Within this survey, you will find questions about aspects such as whether people affected by MND can access the support and services they need; what challenges, issues, and barriers you face or have faced; what we do well, and what we can do differently or develop.

You don’t need to respond to all questions. You can save your responses and return to them later by using the ‘save and continue’ function which will appear in the tool bar at the top of the following pages. 

We know that reflecting and responding to questions about your experiences can be difficult. Please take as much time as you need with answering and discuss with those around you if that helps you. You are welcome to complete the survey with someone else if that helps you. We are also here if you would like to discuss or go through your responses with us. Please contact your IMNDA nurse to discuss accessing support from IMNDA or contact us at services@imnda.ie

We want the survey to be as easy to complete as possible. If you would prefer to receive or respond to the questions in another format, including postal, or would find it easier to share your thoughts via email, text, or a conversation on the phone, we can easily facilitate this – please get in touch at services@imnda.ie

Your responses in this survey are anonymous – we will not ask for your name or other identifiable characteristics. These anonymous responses will be visible to designated members of research staff at MND Scotland and the Irish Motor Neurone Disease Association (IMNDA).

Thank you so much for your time. 

Data use statement: The responses that you provide will be used by the Irish Motor Neurone Disease Association for the purposes of evaluating and improving our services. It may also be used by the Irish Motor Neurone Disease Association and MND Scotland to provide evidence in our collective MND research, service, and policy work. The findings from this research will be used in internal and external reports and publications. The individual data responses will be deleted once the reports have been published, or within 2 years (by 20-02-25): whichever is soonest. If you have any questions about how your data is being used, please get in touch with services@imnda.ie

For people with MND: https://survey.alchemer.eu/s3/90531043/Irish-Motor-Neurone-Disease-Association-What-Matters-to-you

For family members/current carers: https://survey.alchemer.eu/s3/90532181/Irish-Motor-Neurone-Disease-Association-What-Matters-to-family-members-and-or-carers

For those who’ve been bereaved: https://survey.alchemer.eu/s3/90535437/Irish-Motor-Neurone-Disease-Association-What-Matters-for-those-who-have-been-bereaved