Volunteering is not always about spending a day helping out in an office or at a charity fundraising event. It can also be about giving your time to speak out about an issue and make positive changes. Luke is from Lincoln and was diagnosed with epilepsy two and a half years ago. Earlier this year he shared a letter on Twitter after the Department of Work and Pensions wrote to give him 21 days’ of benefit sanctions for missing a 15-minute appointment. He was overwhelmed by the messages of support he received and was soon approached by BBC Look North and the i newspaper to share his story more widely.
He said: “By this point, I realised I was far from the only person who had been treated in this way. I felt that, as well as appealing the decision, I needed to share my experience of the unfair sanctioning system under Universal Credit. It definitely helped to make a difference and they ended up overturning their decision with no need to appeal.”
He continues: “I had no idea my story would reach that level of media exposure, let alone how people would respond. Yet at the same time the support and positive comments I received from people on social media and various disability charities – especially the guys at Epilepsy Action – spurred me on.”
Luke’s passion and commitment to speaking out about epilepsy didn’t stop there, as he explains: “Even more excitingly, I was recently invited to give evidence in Parliament about my experience with benefit sanctions. By sharing my story, this led to me speaking out about it to the Work and Pensions Select Committee, hopefully helping to stop others going through the same appalling experience.”
Luke urges anyone who’s considering volunteering their time by speaking out to give it a go. “Challenging misconceptions and helping people to better understand epilepsy is something I’m very passionate about. This is because I really didn’t understand epilepsy myself until I started having seizures. Whether it’s your experience with epilepsy, benefits or any other health condition, spreading the word can only help others. Tell your story, share your knowledge and challenge misconceptions.
“It can also be very cleansing to get things off your chest yourself, too. There’s a very active and supportive community online who are only going to be interested in what you have to say. If you want to share your epilepsy story, be it a rant, a poem describing your seizures or a blog post addressing misconceptions, then you should. It’s a condition affecting people in many different ways so there are many stories to tell and be heard.”
You can join Luke in becoming a media volunteer for Epilepsy Action at epilepsy.org.uk/media-volunteer