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Feedback and findings

Research findings

It is important to us to feedback our research findings to those who have supported and shaped the work.

Many research findings are shared in academic papers and over time result in new academic directions, changes in clinical care pathways, NHS policy and commissioned services at local and national levels. Elsewhere on this site we have linked to these publications.

It is also important to share findings directly with the patients and public who have contributed and taken part in our research studies in a timely manner and in a language that is readily accessible. We have highlighted below lay summaries of our research findings.

Recent findings



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.


Feedback findings from people with Parkinson's Disease


Neuro Digital: From Attitudes to Strategies

Digital technology has the potential to help reduce variation in care, make care more personal, improve integration of care, identify people with higher risk of a poor outcome and promote self- management. Digital care can support clinicians to be more efficient, freeing up time for the sickest patients. The use of digital care has significantly accelerated during Covid. Through the use of Normalisation Process Theory (NPT), interviews, surveys and co-production workshops with patients and healthcare professionals, this research aims to better understand variation in digital care use to maximise future uptake, use and usefulness for people with long term neurological conditions.


An interview with Dr Sarah Fearn and Dr Alexandra Young