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20 October 2016, 00:01
South Western Ambulance Service have made a series of training videos about epilepsy after a 10 year old boy was misdiagnosed and died.
Charlie Burns from Wiltshire had his first seizure in his sleep but when paramedics arrived they didn't realise it was epilepsy and misdiagnosed him with a febrile convulsion.
Unhappy with the decision not to take him to hospital, dad Barry then took Charlie to see their GP who suggested he might be suffering from nocturnal epilepsy and referred him to see a neurologist.
But four days after his first seizure and before he could receive any treatment Charlie suffered a second fatal seizure and died.
Charlie's death was attributed to SUDEP - Sudden Unexpected Death in Epilepsy but it's taken five years of campaigning from parents Barry and Jan, and a change from Great Western Ambulance Service to South Western Ambulance Service, before anything has come from the 10 year old's passing.
Mum Jan tells Heart: "It should never, ever, have taken this long. It's hard enough to lose a child; that's not the way things are supposed to happen. And for people to have ignored us, at high level as well, was the most belittling thing on top of the grief to have happened."
South Western Ambulance Service have developed a package of training on Sudden Unexpected Death in Epilepsy working with the Burns family and SUDEP Action and all of their paramedics will be put through the programme.
Ken Wenman, chief executive, SWASFT, says: “Following Charlie’s sad death we wanted to take action; wanted to make a real difference and most importantly do something that could support the memory of Charlie, especially to understand what learning we can all take from this sad situation. Working closely with the Burns family we’ve found a way forward and SWASFT has now developed training videos and will adopt the training programme for all its frontline paramedic staff.”
Dad Barry tells Heart: "SUDEP and epilepsy is one of the top ten causes of premature death. Every condition is worthy of publicity but there are conditions in that top list that people just don't know about."
Jan continues: “Sudden Unexpected Death in Epilepsy is one of the top ten causes of early death. The condition kills more people in the UK than cot deaths and AIDS combined. Healthcare professionals need to know more about it and the differences between seizures and convulsions. This training will help make sure our son didn’t die in vain."
Charlie's family have just marked what would have been his fifteenth birthday and the fifth anniversary of his death.