MND Together

MND Together: Improving communication and coordination of MND care

UK Chief Investigator

Liam Knox

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. 

Current status

Open to recruitment

Key dates

Recruitment opening date: 13 February 2026

Planned recruitment end date: 1st March 2027

Recruitment groups

1. Patients with MND

2. Family carers

3. Health and social care professionals

Recruitment target

287 participants in total, broken down into:

Workstream 1:

•  60-80 people living with MND, current carers, and former carers

• 54-72 specialist and community health and social care professionals, NHS service managers, and commissioners

• Total = 152

Workstream 2 :

• Observations: 25 people living with MND and 25 carers 

• Interviews: 25 people living with MND, 25 carers, 25 health and social care professionals, and 10 NHS service managers

• Total = 135

Click here to see how many participants have been recruited into this study to date (external link to the NIHR public study search)

Locations

• Sheffield, Principal Investigator: Chris McDermott

• South Wales network, Principal Investigator: Caroline Bidder

• Other sites joining soon - details to be confirmed

Contact details

Email Liam Knox L.Knox@sheffield.ac.uk or Clare Bartlett c.bartlett1@nhs.net

Inclusion / exclusion criteria

Inclusion criteria

People living with MND:

• Anyone living with MND, capacity to consent, willing to consent, ability to engage in focus groups or observations.

Carers/former carers:

• Anyone who currently or has previously cared for someone with MND, capacity to consent, willing to consent, ability to engage in focus groups or observations.

Health and social care professionals:

• Anyone who currently is or has provided care for people living with MND or their informal carers, willing to consent, ability to engage in focus groups or observations. 

Exclusion criteria

• If all inclusion criteria are met there are no specific exclusion criteria.

Funder

NIHR

Sponsor

University of Sheffield

Study design

Observational