Managing medical crises: the experiences of people affected by Motor Neurone Disease and their carers

Motor neurone disease (MND) is a non-curative neurodegenerative disorder that has a rapidly progressive course. Due to the direct and indirect symptoms of the disease, people living with MND can suffer from a range of acute medical emergencies throughout the course of their illness. The majority of people are cared for at home and during an acute incident need to access crisis intervention services, i.e., out-of-hours doctors/nurses, or ambulance services. There is limited knowledge and literature on the experiences of patients and carers of using these services.This qualitative study explored the experiences of people with MND and their family carers who had accessed a crisis intervention service during a medical emergency. Semi-structured interviews were conducted with seven people with MND; five family carers, and two bereaved family carers. The majority of participants were satisfied with the service they received. Issues relating to negative experiences included a lack of clear information about when services were available, a lack of understanding of how the ambulance service works, and poor communication not only with service users, but also within and between services.The study highlights a need for clearer information to be provided so that service users understand, and have confidence in, the ambulance service. The study also identified the potential for a system that ‘flags’ the details of people with MND who have frequent falls on the ambulance service computer system. These recommendations are in line with those provided in the Department of Health's End of Life Care Strategy published in 2008.