The Improving MND Care Survey


1. Introduction

The MND Association is dedicated to improving the lives of people affected by MND. This survey is your opportunity to tell us what it’s like to live with MND, or to care for someone with the disease. We also want to know what support you receive and what further help you would like made available.

By taking part in this survey, you’re helping us improve care and support for people like you. By understanding your needs and the difference services make to you, we can make informed decisions about how to support people affected by MND. 

Completing the survey
There are two parts to the survey. The first is for people living with MND, and can be completed by that person, or on their behalf, if they need help. However please remember the answers should be provided by the person with MND.

The second is for people who care for someone with MND - spouses, siblings or children for instance. If you’ve recently been bereaved, we’d like to hear from you as well, so please complete the survey.

We’re keen to gather the views of as many people as we can. If you have MND please encourage the person who has the main responsibility for helping with your care to complete the survey, if they are able.

The survey may take up to 30 minutes to complete and the questions cover many topics. If there are questions which aren’t relevant to you, or you’re not comfortable answering, please leave them blank.

Your participation is voluntary, and your responses will be treated in confidence. No identifiable information will be shared outside the MND Association without your express permission to do so.

When completing this survey online, you don’t have the answer the online survey in one go – you can return to it if you need a break - just select the button at the bottom left and type in your email.

The Association is proud to also support people living with Kennedy’s Disease. This survey will also gather responses from people living with Kennedy’s Disease and those who care for someone with the disease.

Data Protection
We may use any responses or comments you make in the survey to promote the MND Association, secure funding and highlight problems with services and support. 

By completing this survey, you are providing consent to us to use your personal information for the purpose specified.  If you do not want to receive surveys from us in the future, just let us know by emailing For further information on how your data is collected and used, see our full Privacy Policy here: If you have any questions, need help or would prefer a translated or large print version of the survey please contact MND Connect:
Telephone: 0808 802 6262 or email:   

1. The first set of questions are for the person with MND to fill out. If you are a carer and want to skip to your questions, please indicate below: