In 2019, we began to research the issues of loneliness and isolation in the multiple sclerosis (MS) community. We found that 71 per cent of people affected by MS in the UK experience these issues, or have done in the past. While this is a shocking statistic, it is the voices of those we spoke to that told the true story.
This is a story of the barriers people affected by MS in the UK face when they are trying to connect, reach out for help and maintain their independence. It is a story about how ‘depression keeps people away’ and how ‘there is nothing in my area if you are having a really bad day, mentally.’ It is not easy reading, but it is essential reading.
From focus groups and telephone interviews to our online survey, the MS community shared their experiences of loneliness and isolation with honesty and courage. Thank you to every single person who took part in this piece of research.