This study uses surveys and focus groups to identify the factors that help to maintain an individual’s optimal level of living with the neurological condition (baseline factors), the critical events that can cause a change in care requirements in each of five neurological conditions, and the impact of fatigue. By identifying and better understanding baseline factors, critical events and the features of fatigue in long term neurological conditions, our findings will enable future research to stratify long-term neurological conditions by the degree of complexity and individual burden and match service users more effectively to appropriate clinical and social care resources.