MND Together: Improving communication and coordination of Motor Neuron Disease care

Background People living with Motor Neuron Disease (plwMND) should receive coordinated care by a specialist team of health and social care professionals (HSCPs). This improves length and quality of life. Apart from appointments with this team, which are held every 2-3 months, care for plwMND is typically delivered by non-specialist community teams. For this model to work, effective communication and coordination across multiple organisational and geographical boundaries is required. However, in practice there are often poor links between teams, who report limited knowledge of MND resulting in suboptimal care. To improve the standard of care delivered to plwMND within the community, we must overcome the inter-organisational and geographical barriers to coordination. Aims The aim of this project is to increase the quality of care that is delivered to plwMND by improving coordination between MND specialists and community services. We will understand current practices, barriers and facilitators to coordination and co-produce a new intervention ‘MND Together’ to improve outcomes for those living with MND whilst making services more efficient. We will conduct early evaluation within a real world setting. Methods and timelines This is a sequential mixed methods study. EDI workshops will help us understand how we can best support those from seldom heard groups to engage in all stages of the study. WS1(months 1-12) will create a national picture of MND care and start a behavioural diagnosis on the barriers and facilitators of coordination, using routine data and focus groups with 60 plwMND and carers, and 54 HSCPs, NHS service managers and commissioners. Data will be mapped to the Behaviour Change Wheel. WS2(months 6-18) is a multiple case study with in-depth ethnographic observations and interviews in 5 sites. Sites will be recruited using WS1 data to identify all MND specialists and community HSCPs involved in the care of plwMND. 30 hours of observations, 5 interviews with plwMND/carers, and 5 interviews with HSCPs will be conducted at each site. Data will be analysed using thematic analysis. We will conduct within-case analysis of each site before cross-case analysis using pattern matching. WS3(months 18-26) will co-produce a new intervention ‘MND together’. 40 plwMND, carers, and HSCPs, service managers, and commissioners will be recruited to an Open Innovation Platform. Using an Integrated Knowledge Translation Approach, and synthesised WS1 and 2 findings, we will co-produce MND Together to support MND coordination and explore the routine data needed to evaluate this intervention. WS4 (26-34) will evaluate whether MND Together meets the APEASE criteria. We will refine the intervention by using MND Together in 3 sites, and using routinely collected data and 20 think-aloud interviews to understand how the intervention works in the real-world. Anticipated impact and dissemination This study will provide information integral to improving coordination of MND care and will have formed lasting relationships with NHS service managers and commissioners to facilitate implementation of study findings and improve impact. MND Together will be ready for a future study to evaluate, co-produced with all stakeholders to increase the likelihood that this will improve outcomes for plwMND and the efficiency of services. We will work with our Lived Experience Advisory Group throughout to make publications suitable for both academic and lay audiences.