“Simon is a passionate, committed and engaging advocate for people with epilepsy and their friends, relatives and carers. Our team has been very fortunate to have had Simon’s involvement in many of our research projects. He was instrumental in bringing our research in epilepsy diagnostics to life as part of the national production Beyond My Control in partnership with the Northcott Theatre. Most recently he has been using his talents to help our researchers ensure their work has relevance to the public and that clear routes to achieving societal benefits are mapped out and actioned.”
Simon has an incredible focus and passion for bringing together people with epilepsy and people with lived experience of epilepsy, and creating and maintaining an environment where they can talk, listen, learn, provide and get support, and empathise.
The way Simon creates these communities is really inspiring: every individual’s voice matters, different perspectives are respected and given space, which means that everyone learns about commonalities of their experience with epilepsy but also the individual differences from person to person. He is a strong advocate for bringing scientists and science into this environment: this means that the community gets an opportunity to learn about new scientific or technological developments, but it also provides an amazing opportunity for scientists to learn and gain insight as to how their work really fits in to the lives of people with lived experience.
When I was doing my PhD at the University of Exeter, being part of these meetings and interacting with Simon on a regular basis meant I gained lots of insights that are simply impossible to gain by simply reading journal papers or going to scientific conferences. Conversations with Simon have led me to reassess previous assumptions I held – his questions are critical, direct, and on point – and allowed me to reformulate questions of interest in a way so that they are grounded in a deeper understanding of epilepsy.
"Simon inspires and leads others with epilepsy so that they can contribute to a better understanding of epilepsy (clinical and scientifically), and ultimately prevent / cure; and engages the epilepsy community more widely in a way that can’t be done from a clinical service or academic study. It’s also important for clinicians and researchers to hear from people with lived experience, Simon’s talk at Exeter [University] last year and the ICTALS 2019 (International Conference for Technology and AnaLysis of Seizures) session were very good examples of this happening."
Simon is such an inspirational speaker. For several years he has given a 1-hour lecture to Pharmacy students at the University of Bath. We really value his contribution.
His talk was interesting, thought-provoking and searingly honest. He has such an engaging style that our students really responded to. I know how much the students really enjoyed his talk and learned a lot from him, as did I.
"Simon is an integral member of the Translational Research Exchange @ Exeter’s public engagement group, called MAGPIE. He has provided invaluable feedback to researchers, from suggesting ways in which public and patient engagement can be embedded in research projects, to helping make language accessible to the general public. These insights are invaluable to researchers in our group; not only do they receive practical public engagement advice, but by discussing their research with Simon and other MAGPIEs they are challenged to reflect on the broader societal impact of their work. Simon has also taken on responsibilities for specific areas of work around epilepsy research. Simon recently took a leading role in providing the patient perspective to the organising committee of an international academic conference on epilepsy research: he gave constructive feedback on conference programme structure and suggested there be a ‘safe space’ at the conference for people with lived experience. Furthermore, he gave an inspiring and honest presentation on the first day conference, giving a testimony of his epilepsy journey to an audience of academics, clinicians, industry representatives and other people with lived experience. Simon has also participated in Pint of Science Exeter 2019 alongside Professor John Terry, co-hosting an informative and fun quiz all about epilepsy. Overall, Simon has been an invaluable asset to our group, providing insights both from his experience of epilepsy but also as a public representative. His humour, honesty and commitment make it a pleasure to work with him"
"The lecture was delivered excellently, it was very thought provoking and I came out of the lecture feeling I had a greater understanding of epilepsy and the extent to which it can affect people's lives."
"Simon was really great, it was an incredibly insightful talk and I really enjoyed it... [It was a] very eye opening and interesting talk! Wish we had more talks like this! Great talk and very well done! It was so interesting to listen to a patient's perspective and honestly taught me so much."