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Simon Lees from our Patient Advisory Board shares his experiences working with charities, engaging in research, and living with epilepsy

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Simon Lees is on the Patient Advisory Board. Here he writes about his experiences working with charities, engaging in research, and living with epilepsy.

Simon Lees

Our Patient Advisory Board represents people with depression, epilepsy and multiple sclerosis, along with people from relevant support organisations to ensure that the views of people with conditions are considered. Their role as self-employed advisors is to provide feedback on the layout and content of research materials and to provide expert opinions on important decisions on the design of studies.

“I have epilepsy, which is now fully controlled with medication, but sadly lost my elder brother to the condition. This experience encouraged me to study epilepsy for three years remotely in addition to working full time.

I have been a member of three epilepsy charities, a trustee of one and an experienced researcher of another. I have given lectures on the condition all over the UK to a variety of lay and professional audiences, so when the charity Epilepsy Action approached me to apply for a position helping RADAR-CNS it seemed the next logical step to take.  

My past experiences gave me the confidence to get involved in new cutting-edge technology systems within RADAR-CNS.  I had recently retired from working in Quality Assurance in animal nutrition, so had more time to concentrate on PAB and charity work. 

Stigma in all three conditions is still present today. People with epilepsy very rarely have warnings for when or where their next seizure may take place. Embarrassment can follow which can reduce people’s quality of life, such as their self-confidence in their social and working lives.

I had been involved for many years in Epilepsy Action’s Research Network group, assessing written papers for university placements, and working and progressing a variety of existing research themes for patients. This gave me a good foundation to increase my knowledge of new research at RADAR-CNS. 

The RADAR-CNS research project allowed me to learn about new electronic devices such as Smartphones and Wearable devices that can hopefully help patients experiencing the conditions above. Developing easy to use devices within RADAR-CNS to predict relapses could become a tremendous advantage to everyone concerned. 

Working with professional research teams at King’s College London, alongside other volunteers (with their wide ranging experience) within the PAB groups, has helped to improve the design and trialling of electronic devices. This has enabled the researcher to choose the correct equipment to be developed by a diverse set of experts from different backgrounds. Hopefully this will help people achieve the best possible outcomes for their neurological conditions.”

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