Tourette's and tics: What support is out there as cases rise among young people?

Video report by ITV News Meridian's Ravneet Nandra

New research shows there has been a big rise in the number of young people developing movement tics and tic-like attacks caused by anxiety and the pressures of lockdown. 

Tics and Tourette's syndrome are fast and repetitive muscle movements that result in sudden jolts of the body or sounds. 

Specialists and hospitals, including Frimley Park in Surrey, say there has been a worrying increase in referrals, particularly of girls and young women.

It is now feared cases could double by the end of the year.

Becca uses her 635,000 followers on TikTok to raise awareness of her Tourette's and tic attacks. 

She was diagnosed last October during lockdown after something triggered her first attack, though doctors suspect she's had it since she was 14. 

Becca says: "It's so unpredictable, like one day I can have barely any tics, it can be really calm, the next day it could be a big explosion of tics.

"It's kind of learning my body and the triggers and knowing when to take time away from people or knowing when to be nearer to people. You learn to manage it and work with your body, rather than fight against it."

Typically, childhood tics start around 5-7 years of age, more commonly affecting boys in a ratio of 4 to 1.

From 2019 to 2020, Great Ormond Street and Evelina Children's Hospitals each received four to six referrals of teenage girls with tics. 

In the last three months of last year, they received three to four referrals each, per week.  

Experts at Frimley Park Hospital say tics come in waves but the last year and a half could have triggered this wave in tic attacks. 

Dr Jeremy, a Stern Consultant Neurologist, said: "We think that some of these patients have a primarily stressed-induced illness called Functional Neurological Disorder which can look similar to Tourettes Syndrome but with different brain mechanisms.

"Some, well quite a few actually, had mild tics when they were younger, or they might have relatives, parents, brothers or sisters who have tics or Tourette's syndrome, so there seems to be some propensity to have tics and the stress may cause them to burst out and many seem to have a mixture of these two conditions."

The neurological condition has no cure, so there is an urgency from doctors to make sure young people have confidence in living with it as much as possible. 

Dr Uttom Chowdhury, a Consultant in Child and Adolescent Psychiatry said: "Almost an acceptance of it would be good and I found that in some of the girls when you talk to them say 'well no you're not going mad, you're not going crazy, this is just a little quirk that's happening now, we think it's anxiety related.'

"A lot of them feel reassured and surprisingly a lot of them feel confident about the tics as well, not as distressed as we'd normally expect which says there may be a psychological element to it."

Who can I or someone I know contact for help: 

Tourettes Action is the UK’s leading support and research charity for people with Tourette Syndrome (TS) and their families. They want people with TS to receive the practical support and social acceptance they need to help them live their lives to the full. Their helpline is 0300 777 8427. 

NHS Choices has comprehensive help & information from NHS Choices including links to external sites.

Tourettes Hero is a place to celebrate the humour & creativity of Tourettes. It’s not about mocking or commiserating - it’s about reclaiming the most frequently misunderstood syndrome on the planet.

Tourette Scotland provides information, advice and support for children and adults with TS. Their helpline is 0300 111 1462.