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People with Tourette's struggling to get help

Alice Franklin is one of 300,000 people in the UK with Tourette’s Syndrome. But a survey by the charity Tourette's Action shows most struggle to access medication and therapies

Alice Franklin is one of 300,000 people in the UK with Tourette’s Syndrome. For 25-year-old Alice, the condition manifests itself in uncontrollable body movements or ‘tics’ – jerking, twitching, punching walls and windows and involuntarily collapsing to the floor. The physical side of the condition is the hardest to deal with and exhausting she says. But she also swears and hurls impromptu insults at individuals she’s just met – including her new boss and customers in a bar where she worked. It’s a life-changing condition Alice has lived with for more than three years – but for her and thousands like her, therapy isn’t readily available. In fact, a survey shared exclusively with 5 Live Investigates by the charity Tourette’s Action shows even when a diagnosis has eventually been made, most aren’t given medication or directed to any form of behavioural therapy. And even when they are, it can take years to access. There are no NICE guidelines relating to the condition and Tourette’s Action says the condition is widely misunderstood by the medical profession. More than 460 people responded to the charity's survey and 79 per cent of respondents said their mental health had been affected by the condition. More than a third said they’d considered suicide of engaged in self-harming behaviour.

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