University of Oxford’s Futuremakers podcast features SameYou as it focuses on brain injury
Jenny Clarke, SameYou CEO, spoke about the charity’s campaign to normalise brain injury and its work to give survivors a platform to call for better care, as she was featured on the University of Oxford’s Futuremakers podcast.
The programme, which investigates brain injury and rehabilitation, outlines that since the charity launched four years ago, it has worked with leading neuro-clinicians and universities around the world to deliver innovations in recovery and has funded new ways of working with patients.
She told the podcast that when her daughter, Emilia, told her story and launched SameYou, she asked survivors to share their experiences – and the sheer numbers wanting to respond crashed the website.
Messages revealed a huge unmet need - on a global level – outlining that after a brain trauma there isn’t enough support for survivors leaving hospital. It’s back home where the hard work, frustration, fear and challenges really begin.
Jenny added: “There is so much stigma about brain injury and so much shame and so much uncertainty about the reaction people will get if they actually admit - and I have to use that word - isn’t it shocking that you have to admit that you have had a brain injury.
“So we have seen from, probably just now, over 10,000 people who have written to us, communicated, emailed and told their stories to us because they say that Emilia has normalised it. So this is not a small conversation, this is just an indicator of the work that must be done to actually show the need that people have somebody to at least explain to them what is happening to them and to share their journey as they go through all sorts of really difficult, chronic conditions.
“What we are here to do is call for equity of access to recovery services for people who have survived a brain injury. One voice can’t make a difference but if we come together and amplify the voices of all survivors, we can enable policymakers to understand that this is both a human and economic imperative.”
This month, Jenny addressed the World Health Organisation’s Global Rehabilitation meeting in Geneva, speaking about the power of advocacy and the need for survivors’ voices to be heard so policymakers realise that only 50% of people are getting the rehabilitation support that’s essential to allow them to ensure they get the quality care they need.
SameYou has been granted membership to the newly-formed World Rehabilitation Alliance after the organisation’s landmark ruling to commit to boosting worldwide access to rehabilitation, and the charity has outlined how advocacy is central to communities across the world.