Are you a family living with MND?
Please help researchers at the University of Leicester understand your experiences in this short online survey about family caregiving and your interactions with health and social care services.
If you live in the UK are aged 18 or over, and either support a person with MND or are living with MND then we would love to hear from you.
Surveys close on 26th June 2026 If you require a translation or to complete the survey by telephone, please call Emma on: 0116 252 5438.
for more information and to take part in the survey, you can scan the QR code on the poster or click on the links below.
This survey is for anyone in the UK aged 18 or above and is living with MND Please read the 2 page information sheet, then you will be asked to confirm you are willing to take part in the anonymous survey
This research is being undertaken by researchers at the University of Leicester as part of the Optimising Care Pathways in Motor Neurone Disease for Family Carers study, and is being funded by the Department of Health and Social Care.
Who can I contact to find out more?
You may ask any questions before deciding to take part by contacting the researcher Emma Regen at the University of Leicester on 0116 252 5438 or email optimnd@leicester.ac.uk.
If you would like to complete this survey over the telephone, or need an interpreter, please ring Emma 0116 252 5438, who will help with this.
Research aim
The aim of this research is to find out about the experiences of families as they look after a person with Motor Neurone Disease (MND)
You can take part in this anonymous survey if you are over 18 years old, live in the UK and are living with MIND
What am I being asked to do?
In the survey there are questions which ask you to make a choice about how important aspects of care and support are to you and how helpful you find aspects of care and support. There are spaces where you can write more information. The survey will take about 10 minutes. You can skip questions and use the finish later button if you want to save your responses and take a break. Your responses are anonymous, so we don’t know who you are.
There are 4 sections.
Section 1: About you - asks for information about yourself - this is anonymous but helps us describe the kinds of people who have taken part.
Section 2: About your carer - asks about things such as your relationship to the person who provides support and care to you.
Section 3: Services received - asks about types of contact you have with different of health and social care people
Section 4: Support for you and your carer -asks about types of support you and your carer might get from whom and how helpful they are.
All this information will help us understand the types of people who are proving care and the ways in which this is happening. We will do a report for people who provide MND care.
Do I have to take part?
No. Even If you decide to take part, you may withdraw before submitting your answers by pressing the ‘Exit’ button/closing the browser.
If you would like to take part please click on the link below.
This survey is for anyone in the UK aged 18 or above who is a relative or friend of a person with MND and who provides some care and/or support to them.
This research is being undertaken by researchers at the University of Leicester as part of the Optimising Care Pathways in Motor Neurone Disease for Family Carers study, and is being funded by the Department of Health and Social Care.
Research aim
The aim of this research is to find out about the experiences of families as they look after a person with Motor Neurone Disease (MND)
You can take part in this anonymous survey if you are over 18 years old, live in the UK and provide care and support to somebody living with MND.
What am I being asked to do?
In the survey there are questions which ask you to make a choice about how important aspects of care and support are to you and how helpful you find aspects of care and support. There are spaces where you can write more information. The survey will take about 20 minutes. You can skip questions and use the finish later button if you want to save your responses and take a break.
Your responses are anonymous, so we don’t know who you are.
There are 4 sections.
Section 1: About you - asks for information about yourself - this is anonymous but helps us describe the kinds of people who have taken part.
Section 2: About your carer role - asks about things such as your relationship to the person you provide support to.
Section 3: Services received - asks about types of contact you have with different of health and social care people
Section 4: Support for you in your carer role -asks about types of support you might get from whom and how helpful they are.
All this information will help us understand the types of people who are proving care and the ways in which this is happening. We will do a report for people who provide MND care
Do I have to take part?
No. Even If you decide to take part, you may withdraw before submitting your answers by pressing the ‘Exit’ button/closing the browse
Who can I contact to find out more?
You may ask any questions before deciding to take part by contacting the researcher Emma Regen at the University of Leicester on 0116 252 5438 or email optimnd@leicester.ac.uk
If you would like to complete this survey over the telephone, or need an interpreter, please ring Emma 0116 252 5438, who will help with this.
If you would like to take part please click on the link below.
Opti MND survey family and friends
