I also joined the SHAPE NETWORK Steering Group, along with nine other people affected by epilepsy, to discuss ideas on the development of the SHAPE NETWORK strategy. As a group, we have appropriately ‘shaped’ a set of clear ideas and goals of how Epilepsy Research UK can progress with genuine involvement of people with epilepsy. I am really excited to see this work in action in the coming months.
I hope the network can encourage and engage people to come forward to be involved in a range of research and advocacy opportunities. Patient involvement has the ability to make research relevant, focused and hopefully more successful in its aims. It also has the potential to give people with epilepsy a sense of real purpose, to raise self-esteem and perhaps even help develop additional skills.