Neuro LTC: Care needs in neurological conditions

Identifying and understanding care needs in long-term neurological conditions

The Neuro LTC study aims to identify and better understand the factors and events that influence the care needs of people with long term neurological conditions, including MND. It will identify the factors that predict levels of care. It will also identify the events that can lead to an increase in care either at home or with an admission to hospital. It will also identify the impact of fatigue for people with MND. The long term objective of the project is to help to better match available resources to individuals’ care needs.

What does taking part involve?

There are two surveys, each taking about 15 to 20 minutes to complete. The first survey is for patients, caregivers and people who have been caregivers in the past. The survey asks you about your personal experiences of what affects the care that a person living with MND requires. You can complete the survey online, on paper or over the phone. The second survey is only for patients. This survey asks about the impact of fatigue. You can complete this second survey at the same time, at a later time or not at all.

Study location

You can take part in this study regardless of your location.

Who can take part?

• People living with MND
• Carers of people living with MND
• People who have been caregivers to a person with MND in the past

How can I take part?

To take part, use the button on this page to enter the survey.


For any queries and more information please contact Sarah Fearn at or on 07876818404.


This study is sponsored by University Hospital Southampton and is supported by the National Institute for Health Research (NIHR), Collaborations for Leadership in Applied Health Research and Care (CLAHRC) Wessex.

Expiry date: N/A

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262