iDeliver MND: Investigating psychological support in MND

Investigating people living with MND and carers’ perspectives on available psychological support from their MND health services

MND has a significant psychological impact, which is experienced differently by each person and their families. MND can affect practical function and independence, often leading to a need for new equipment, interventions, and/or increased care. This can lead to a loss of role and self identity, and changes in social interactions. Informal carers of people living with MND also report feeling similar losses to those living with the disease as their family members lose capacity and independence. 

The 2016 NICE guidelines for MND assessment and management recognise the importance of psychological and social care, but do not say how best to deliver this. Access to specialist psychology is limited and not available across the whole of the UK. The iDeliver MND study aims to assess the current state of psychological care service delivery for MND across the UK. The researchers have developed a survey to gather the views and experiences of people living with MND and their informal carers. They aim to identify what works well and what can be improved. They will highlight any unmet needs and make recommendations to deliver the most effective psychological support for people living with and affected by MND.

You can find out more about this study on our research we fund pages.