Rebecca has lived with drug-resistant focal epilepsy for the past 30 years. In April, she joined our SHAPE NETWORK Steering Group to help develop the strategy for the network. Here, Rebecca explains why she wanted to be part of this network and why it’s so important for those affected by epilepsy to become involved in research.
Why did you want to be part of the SHAPE NETWORK?
I first heard about the SHAPE NETWORK on Facebook and signed up right away – it was a very straightforward process. I am excited to be involved in the network as it offers a great opportunity for people living with epilepsy to have a direct impact on the types and quality of research that is carried out. Research is central to improving the lives of people living with epilepsy now, and for those who will either develop or be born with the condition in the future. I have been involved in research in a number of ways over the past eight years. As someone living with epilepsy, I feel it’s a way of turning a negative into a positive – taking my years of lived knowledge and experience into forward motion.
What have you been involved in as a SHAPE NETWORK member?
I successfully applied to be a member of the SHAPE NETWORK Steering Group, along with nine other people who are also affected by epilepsy. Being a Steering Group member has so far involved attending virtual meetings to discuss ideas on the development of the SHAPE NETWORK strategy. The process of being on the Steering Group has been a positive experience and I have felt valued in my ideas and contributions. 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 also joined discussions around the review of grant applications and as to how people affected by epilepsy can become meaningfully involved in research. I am really excited to see this work in action in the coming months.
What do you hope the SHAPE NETWORK can achieve for people with epilepsy?
I hope it 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.
What do you hope research can achieve for people with epilepsy?
I hope for more effective treatments, with fewer medication side effects. A third of people still live with uncontrolled epilepsy – I would hope this can be markedly reduced.
Why do you think it’s important that people affected by epilepsy are actively involved in research?
Living with epilepsy gives you the insight of walking in the epilepsy shoes every day. So, you know where they are tight, where they rub and how you want to cast them off. You also have first-hand individual experience of medication side effects. Both these things give you the knowledge and coping strategies that can inform and shape research. You’re an expert in your own epilepsy and your voice should be included in shaping research directions and decisions.