Reducing variation in nutrition support for people with MND

Sharing experiences to help improve access to nutrition support in MND 

Malnutrition and weight loss are common in MND and can be linked to a faster disease progression and reduced quality of life. Research suggests that early nutrition support matters in MND, but there is no clear, evidence-based guidance on when and how to provide this. Early, personalised nutrition support, led by a dietitian, can identify and address undernutrition, help to stabilise weight, reduce muscle loss, and could improve survival and wellbeing. However, timely nutrition support after MND diagnosis is often delayed and can vary by location.

A hospital dietitian, specialising in MND, is looking to complete a project aiming to understand the nutrition support which is available currently and how people access this support. The project will also look at ways to improve the pathway to nutrition support for people with MND in the UK. They would like to gather the views of people living with MND on their experience of accessing nutrition support, what helps or gets in the way, and what a nutrition support service should offer across someone’s experience of MND. They would like to understand what people with MND would prioritise for future research on nutrition in MND. 

How will this study help people with and affected by MND now and/or in the future?

The project will provide a UK wide picture of where delays, gaps and inconsistencies exist in nutritional support for people with MND. It will support the development of minimum standard of nutrition support services, reducing inequity in the provision of these services. This could improve long term outcomes for people with MND, reducing unplanned weight loss and undernutrition.