A boy bullied out of school for having Tourette's syndrome now travels to another county for school.
People laughed and cast "weird" looks at Josh Dooley, 17, during his time at school on the Wirral. Some called him names and one person even asked, 'Can you tic for me?', before an incident where boys doused him with water on a bus proved to be the final straw.
His dad left his full-time job to take on a role at a private school so they could reduce the fees enough to afford to send Josh there instead. But this solution proved temporary.
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Josh's school experience left him feeling "isolated" and "unwanted" as his symptoms made him stand out and be seen as disruptive. What started as motor tics like twitching, blinking and shaking his head, became more severe until it put him at risk.
Josh, from Moreton, has given himself concussions more than once by whacking his head against a wall. When embarrassing or offensive verbal tics, like calling his teacher a "nonce", began, Josh felt like he was losing control and had nowhere to turn for help as the social stigma grew and his mental health spiralled.
The aspiring musician said: "I'd been struggling and people would almost see it as a party trick when it really wasn't. I get bullied, I get laughed at. It's given me massive confidence and insecurity problems. It's definitely affected me negatively.
"People need to realise that it's more than just 'funny person says funny things because they can't help it' - it's, you know, 12-year-old kid tries to kill himself because he can't deal with the bullying at school."
Tourette's syndrome is an inherited neurological condition affecting more 300,000 people in the UK, causing them to make involuntary movements and sounds. It is incurable, but symptoms can be treated, including with anxiety medication.
Stress and anxiety can exacerbate tics, meaning Josh is experiencing some of the worst he ever has now he's preparing for GCSEs. Josh described it as a mental itch that keeps building if you try not to scratch it.
He's learnt to redirect the energy of a tic, channelling a vocal one into a hand shake by sticking out his arm when he feels it coming. But doing so more than once can be draining, so Josh has to reserve this strategy for particularly embarrassing or offensive vocal tics. He said: "You feel a bit trapped in your own body, to be honest. It's not a nice feeling."
His 48-year-old mum Jo, who also has tics and has "been amazing at helping support" Josh, said he was "incredibly lucky" to be diagnosed at 14, even with a two-year wait.
In the last decade, the number of consultants in the country with a special interest in Tourette's has dropped from 44 to 17, with none in the North West of England, according to an ITV Granada report in January this year.
When asked to confirm whether this was still the case, a spokesperson for the Department of Health and Social Care said "early intervention and treatment is vital" and pointed to an extra £2.3bn they hope to put into mental health services by 2023/24. The spokesperson said: "The majority of services for people with Tourette's syndrome are commissioned locally by Clinical Commissioning Groups (CCGs), who are best placed to plan the provision of services subject to local prioritisation and funding."
CCGs cover separate local areas like Wirral and Liverpool, not the North West of England as a whole. A spokesperson for NHS England North West did not have any information at hand on whether a pathway for diagnosis and ongoing support for people with Tourette's exists in the region.
In response to a question from St Helens North MP Conor McGinn in June 2021, then-Minister of State for Social Care, Helen Whately, said: "The potential commissioning of a local tertiary service for tics and Tourette's is under review by CCGs across the North West and NHS England and NHS Improvement."
Although Josh was able to be diagnosed and has accessed mental health support from CAMHS (Children and Adolescent Mental Health Service) locally, he has to travel to Manchester for a Tourette's syndrome support group run by Tourettes Action, which has a group starting in Liverpool this year. When his private school closed, Josh's parents were unable to find a suitable and affordable local alternative that was able to take him, so now he spends 12 hours a day away from home for an education in Chester.
Even there, the Tourettes Action charity, run by St Helens woman Emma McNally, has had to help ensure Josh's access arrangements are implemented, like allowing rest breaks and a laptop for schoolwork. Josh said: "I just think it's ridiculous. No other kid who's gone through what I've gone through should have to travel like an hour and a half there and back to school every day. They deserve basic human rights and support."
