Understanding the Hidden Aspects of Neurological Conditions

We recently conducted a research project to explore the experiences of people living with neurological conditions. We wanted to understand how people experience hidden symptoms which are difficult to observe from the outside such as fatigue, pain, cognitive problems, and changes in mood. The study aimed to explore how these symptoms impact daily activities and how people can be better supported to live well for longer.

The study involved people with neurological conditions taking photographs and writing narratives that captured their experiences as they went about their daily activities.

On July 28th we invited people who took part in the study and healthcare professionals to a workshop at the University of Kent. We exhibited the photographs and narratives to attendees who enjoyed looking at these over a coffee and pastry. The research team then presented initial findings to attendees and sought their feedback on these early ideas. Attendees provided helpful comments around the importance of early support post-diagnosis, socialising and community, and being able to talk with a healthcare professional and ask them questions.

We are very grateful to all those who took part in the study and attended the workshop. The final report will be shared once completed.