MND Together: Phase 1

Summary

This project consists of two workstreams, both of which will be mixed-methods and aim to develop a national UK picture of current care coordination for people with MND, including observations of barriers and facilitators. The studies will explore how care is transferred and communicated across MND specialist services to non-specialist community health settings.

In workstream 1, the researchers will conduct focus groups with people with MND, Carers, former Carers, Health and Social Care Professionals and managers and commissioners. These focus groups, alongside the analysis of routine data, will create a national picture of MND care and begin a behavioural diagnosis of the barriers and facilitators. In workstream 2, a multi-site ethnography study will be conducted, including observations, interviews, routine data, care plan and document review. This Workstream will observe how care is coordinated between specialist and non-specialist services and continue to explore barriers and facilitators that can not be identified through interviews.

Conditions

• MND (Motor Neurone DIsease)

Interventions

OTHER

Not applicable- observational study

MND-Together tool will be informed by the findings from this study

Sponsors & Collaborators

• National Institute for Health Research, United Kingdom

  collaborator OTHER_GOV

• Liverpool John Moores University

  collaborator OTHER

• Sheffield Teaching Hospitals NHS Foundation Trust

  collaborator OTHER

• Cornwall Partnership NHS Foundation Trust

  collaborator NETWORK

• Northern Lincolnshire and Goole Hospitals NHS Foundation Trust

  collaborator OTHER

• Dementias Platform UK

  collaborator UNKNOWN

• NIHR HealthTech Research Centre

  collaborator UNKNOWN

• Swansea Bay University Health Board

  collaborator OTHER

• University of Sheffield

  lead OTHER

Principal Investigators

• Liam Knox, PhD · University of Sheffield

• Chris McDermott, MBChB, FRCP, PhD · University of Sheffield

Eligibility

Min Age

18 Years

Sex

ALL

Healthy Volunteers

Yes

Timeline & Regulatory

Start

2026-02-28

Primary Completion

2026-12-31

Completion

2027-02-28

Countries

• United Kingdom

Study Locations