Schizophrenia: 'I felt like I'd been given a life sentence'

When Jonny Benjamin describes his experience of growing up with a serious mental illness during his teens and early 20s, it can make for harrowing listening. He talks of the loneliness he felt keeping his distress hidden from those closest to him; of depression, "total hopelessness", self-harm, suicide attempts and repeated struggles to find the right kind of support within the health system. But, for all of these challenges, the 26-year-old has recently emerged as something of an inadvertent champion of young people's mental health.

Three years ago, Benjamin set up a YouTube channel to reach out to others with mental health difficulties, and has since created a catalogue of videos online – usually of him talking to camera but also short films – as well as offering support and a forum for discussion about the issues most affecting young people. His videos make for compelling first-person testimony. He says it is probably "a generational thing", but that putting his thoughts online feels natural. "I can talk to a camera because it's not judging me. If you look at YouTube and you see the way that young people just talk and share, it's amazing."

Benjamin explains that having a direct route to others online as a young person was a heartening way of connecting when he felt "very isolated". The responses to his videos have been "just incredible" and "overwhelmingly" positive and that the support helped put him on the road to speaking out more about mental illness. "People were saying, 'Yes, I've been through this too. Thank you for voicing what you've been through.'"

Worries

Benjamin has become convinced that young people articulating what is stressing them out, and talking about specific experiences of mental illness, is critical to improving services. It is why he is supporting the latest efforts byof the charity Young Minds, which has just launched its biggest-ever online survey to find out what is most worrying young people.

"Young people need to get their voices heard when it comes to mental health," he says. "There are real barriers in the mental health system for teenagers, such as CAMHS [child and adolescent mental health services] coming to an end when someone turns 18. The evidence that this isn't working is plain to see. Less than 5% received a good transition to the adult health, service, according to a recent study.

"The adult mental health services have different criteria, different thresholds. You might not be eligible for therapy and yet you were having therapy [up until that point]."

This year, Benjamin presented a full-length documentary, Failed by the NHS, for BBC3 as part of the channel's much-praised mental health season. Research for the film had a profound impact on him, he says, because it "was a big learning curve" that opened him up to the wider problems with mental health provision. "I mean, I knew there were issues with the system but I didn't realise quite how many issues or quite how big the problem was. I think the thing that most shocked me was that 50% of the people who went to A&E who had self-harmed or attempted suicide were not given a psychiatric assessment."

Benjamin adds that he came out of the documentary process "more concerned" than when he went in because of the extra strain cuts are putting on mental health services.

"It is the government that is truly failing the health service. Mental health spending has fallen for the second year in a row, despite increased demand for it. How is the health service meant to cope as a result? I've spoken to staff within the NHS who feel equally frustrated by reductions such as the cutting of 2,000 psychiatric beds in England in the last two years. They want to do the best job they can, but how can they when they're so overstretched and under-resourced?"

Benjamin first began hearing voices at 10 and subsequently went on to suffer frequent deep bouts of depression from 16. He was diagnosed in his early 20s with schizoaffective disorder – a combination of schizophrenia and depression. Many of the young people he speaks to feel that GPs lack adequate training, but also that the care options are limited. "GPs themselves say they are frustrated with the lack of access to therapies," he says.

Moreover, too many young people are finding their symptoms being dismissed by medical professionals as "hormone-related", leaving them exposed to deeper difficulty, he says. And then there's the issue of turning up at A&E late at night in distress – as Benjamin did while at university in Manchester – but there being no specialist on hand to do a thorough psychiatric assessment.

Of his diagnosis, Benjamin says: "It felt like I'd been given a life sentence. I was in denial. 'I can't be schizophrenic,' I [said to myself]. 'Schizophrenic? That's not me.'" With limited knowledge about mental illness, despite having lived with it for so long, he says all he knew was "what I read in the papers", namely that people with schizophrenia are violent or incapable of recovery. Shortly after he was diagnosed, he thought about taking his own life. He absconded from the psychiatric unit he was being treated in, but changed his mind when he was approached by a stranger who told him of his own experience of recovery. "It was the first time I heard someone say, 'You can get through this.' It was like that lightbulb moment," he recalls.

Benjamin says what matters is that future generations are not left feeling as isolated and ill catered for as the current one. "When I was 12 or 13, if someone had come into my school and said, 'I've got schizophrenia and this is what it's like. Don't be afraid to talk about your mental health – no one is judging you,' I can only imagine the difference that would have made to me."

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