JMIR Publications

ABSTRACT

Background:

Background- Motor neuron disease (MND), also known as amyotrophic lateral sclerosis, is a rapidly progressive neurological condition that requires complex multidisciplinary care. Within the UK, specialist centres provide expert intervention, while day-to-day support often relies on local non-specialist community health and social care professionals. This is due to the distance between people’s homes and specialist centres and the availability of specialist Health and Social Care Professionals. This can lead to fragmented communication and emotional, physical, and financial burdens and can be time-consuming for people living with MND, their carers, and the healthcare professionals involved in their care . Despite the recognised need for better care coordination, it remains inadequate in practice with currently a lack of specific evidence-based interventions for achieving this.

Objective:

The MND Together project aims to address these systemic gaps by 1) developing a national picture of care coordination in England and Wales, 2) identifying barriers and facilitators to coordination within specialist and non-specialist settings, and 3) co-design a practical care coordination tool with key stakeholders.

Methods:

Methods- This protocol outlines the co-design of an intervention underpinned by the Behaviour Change Wheel and the Socio-Ecological Model. Firstly, a mixed-methods, multi-centre study will be conducted to develop a national picture, comprising focus groups with people living with MND, carers, and health and social care professionals, alongside analysis of routine data to map service utilisation and outcomes. Secondly, focused ethnography will be conducted in five MND specialist centres and their catchment areas, involving 25 people living with MND to explore the barriers and facilitators to coordination in practice. Finally, a series of co-design workshops will be conducted to identify key priorities for care coordination and to develop a new intervention, the MND Together tool.

Results:

Results- Data collection begins in early 2026. The research team anticipates that the findings will highlight critical barriers and facilitators in the coordination of MND care including: gastrostomy, advanced care planning, assistive technology, and respiratory support. The co-design intervention will be available by late 2027. This will then be piloted in practice.

Conclusions:

Conclusion- By combining several methodologies with meaningful Public and Patient Involvement and Engagement, MND Together seeks to bridge the fractured gap between specialist and community-based services. The MND Together tool aims to improve quality of care and ensure that expert MND support is accessible as close to every patient’s home as possible.