MND Together: Phase 1.
Research type
Research Study
Full title
MND Together: Improving communication and coordination of motor neuron disease care
IRAS ID
334854
Contact name
Liam/LK Knox
Contact email
Sponsor organisation
University of Sheffield
Duration of Study in the UK
1 years, 4 months, 13 days
Research summary
The quality of care is affected by where people live. People with MND live longer and have better quality of life when their care is delivered and coordinated by experts in specialist teams. Due to MND being rare, expert teams are usually only available in major city hospitals. This means for people living outside of cities, non-expert community teams deliver care, who rely on communication and support from the experts. Although in some areas communication is good (for example when teams build long-standing relationships and staff in teams do not change often), we know in many areas coordination is poor, which results in poorer care.
The aim of this study is to understand what is going well and what is going wrong with the coordination of MND services. From this, a future study will develop new ways of working that will provide expert MND care, as close to each patient's home as possible. We call the new ways of working MND Together.
This study will invite people with MND, their carers, expert and community healthcare professionals, NHS service managers, and commissioners to take part in focus groups. The groups will ask about what goes well with MND care, who is involved, and what can be improved. Secondly, we will observe how expert and community teams work together to provide care to people with MND and their carers. We will conduct 150 hours of observations with people recruited from five different centres (within the major city hospitals) and their related community teams. This will help us understand what goes well and what goes wrong when delivering MND care.
REC name
South West - Cornwall & Plymouth Research Ethics Committee
REC reference
25/SW/0145
Date of REC Opinion
15 Dec 2025
REC opinion
Further Information Favourable Opinion