Carers project
I never saw it as a responsibility, I only ever saw it as just being with him out of love and joy, and I would always tell him that. I didn’t see myself as a carer, it’s just easier to use that word sometimes with other people to make sense of what I was doing. Former carer of someone with MND

Do you provide unpaid care for a loved one living with MND? We'd love to hear from you.

Thank you for sharing your experiences of caring with us. Between November and December 2021, we engaged with 255 people who care for a loved one living with MND.

We want to take this opportunity to thank each and every one of you for taking part and sharing what matters to you.

In total:

  • 218 carers shared their views via our online survey
  • 21 carers took part in our virtual focus groups
  • 5 one-to-one interviews with carers were held
  • 11 volunteers who support carers shared their perspectives

We have gained some rich insights and increased our understanding into the needs and experiences of carers. We will use this information to help shape the support we provide to carers, and to shape our future campaigning work.

We are now analysing the responses we have received and will produce a report in early 2022.

If you have any questions relating to this project you can still contact us by emailing

If you're a current carer for a person living with MND, and you want to share your story, we'd love to hear from you. The MND Association uses personal stories to raise awareness of motor neurone disease and the way it impacts families affected by the condition. We may use your story in the media, on our social media channels, or in our fundraising work. If you are interested in sharing your story with us, contact with the subject line 'My story.'

Or if you need direct information and support relating to your caring role then you can contact our MND Connect helpline by calling 0808 802 6262 or emailing

Person typing on keyboard

Survey for carers now closed

We would like to thank all carers who took the time to complete our online survey, which ran until 13 December. We had over 200 responses.

The survey has now closed and we are analysing the results. We will be using the answers given to inform the next stage of this project, which will look at the support we provide to carers and the issues we campaign on.

A report will be published in early 2022.

If you need to contact us about this survey, please email

Carers Project quote
This is an emotional/physical role changing me from a wife to a carer which is so very sad. To watch the strong person you love fade away and become more dependent is painful. Awful disease it takes everything. Carer of someone with MND

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262