Living with MND: An evaluation of care pathways available to adults with, and the families or carers of, adults with Motor Neurone Disease in Scotland
Authors: Ferrie Jo , Wiseman Phillippa , Watson Nick 
Published: July 2021

Main Findings Motor Neurone Disease (MND) is a progressive condition that damages motor neurones, the cells that control voluntary muscle activity, in both the spinal cord and the brain. It can cause difficulty in walking and movement, talking, swallowing and breathing and many muscles in the body can become affected. To find out what it is like to live with MND from the perspective of those with the condition we carried out a longitudinal study in which we interviewed 40 people with MND and their partners a number of times over a two year period. We found that:•Control, or more particularly the lack of it was the overarching theme that occurred throughout the interviews. People wanted to be consulted, informed and involved in decisions about their health and their social care and where this happened people were more likely to report satisfaction with the service. •The diagnosis of MND is a long and protracted process, one that was for many a very distressing experience. 45% of those we spoke to took over 12 months for a diagnosis, 19% over 18 months. Participants had difficulty getting professionals to take their symptoms seriously and once they entered the neurology system many people experienced delays and often the diagnosis was not confirmed by a neurologist. •Physical access to hospitals was in some cases difficult. Car parking and the location of the clinic often made it hard for people to get to a hospital appointment.•Health professionals had an important role. Good professionals were those who took time to create a sense of teamwork with the person with MND and their family. This was less likely to happen with hospital consultants and where this did not people felt insecure and not listened to. There was also some evidence of poor communication between professionals and medical notes were often not shared between different professionals. Where people accessed general wards they were rarely treated well.•Informal carers provided much of the social care and support for those with MND, with spouses meeting most of the need. Whilst many people were happy with this arrangement meeting the need placed a great deal of strain on the families. Many people did not want to rely on care supplied by outside agencies as they did not trust the quality or the reliability of the care and neither did they want their home overrun with people.•Housing adaptations and the provision of aids to daily living were for many a great cause of stress and strain and many people felt that they were not involved in the decision making process, felt out of control and unable to influence the situation. The rapidly progressive nature of MND can exacerbate this problem. •Social Care and support provided by local authorities was very heavily criticised There were inconsistencies between services, people felt excluded from decisions made about their care and their care needs and people did not have access to the necessary information to make an informed choice about which services to access.•Specialist Care Nurses (SCN) played a vital role in the care and support of those with MND. Not only do they provide help and support directly they also help to act as a champion for the family and coordinate services and service provision. This service is however under great strain and there are a significant number of people for whom this service is not working because the service was too stretched and the resources were not available to allow the SCN to meet their needs.