What is Tourette's Syndrome and what further help is needed to treat Tic Disorders?

Tourette's Syndrome, also referred to as Tourette's, affects more than 300,000 people in the UK and ITV analysis shows more people are being diagnosed with the condition than ever before.

ITV News also found that almost a third of children referred to CAMHS (Children and Adolescent Mental Health Service) with the condition were told there was no help available.

An NHS leading doctor told ITV News Correspondent Rachel Younger children with Tourette's Syndrome and Tic Disorders are being "totally neglected" with a failure to provide even the most basic services in some areas of England and Wales.

So what is Tourette's Syndrome?

The key features of Tourette's

One of the key features of the condition are tics, which are involuntary sounds or movements.

Danny explains what it is like to have a tic that is painful at the back of his neck

Advanced nurse, Joe Kilgariff, who works at Queen's Medical Centre in Nottingham, told ITV News: "I work with all the tic disorders, Tourette's is the name we give to movement and sound tics."

A common misconception is that Tourette's means people swear involuntarily.

The clinical term for that, coprolalia, is something some people with Tourette's experience, but it's one of the minority symptoms on the whole.

However many people with Tourette's do experience other conditions, including ADHD, OCD and anxiety.

'I think they are being totally neglected': Watch ITV News Correspondent Rachel Younger report on the struggle to access basic services

Mr Kilgariff said: "There are lots of children who have autism and Tourette's and dyslexia and dyspraxia - and you can have heightened levels of those, it's all to do with the brain working too fast."

The advanced nurse also said he would also expect people to have intense emotions - both good and bad.

"People with tics seem to be funny, clever, loving, artistic most of the time. With that you also get fears, phobias, everything is normal but deeper and stronger," Mr Kilgariff said.

Advanced Practitioner Joe Kilgariff Credit: ITV News

Who has Tourette's?

The condition is estimated to affect one school child in every hundred and is more common among boys - with males about three to four time more likely to develop Tourette's than females.

Tics typically show up between the ages of two and 15, with the average being around six-years-old.

Sometimes children can have Tourette's when they are young and see a significant reduction in their symptoms as they grow into adults.

Others experience symptoms throughout their life, but specific tics can come and go.

What is the cause of Tourette Syndrome?

Tourette's is a neuro-developmental condition and, though a lot has been learnt in recent years, its exact cause is still unknown.

It's thought to be linked to a part of the brain that helps regulate body movements.

Mr Kilgariff explains: "It's people's muscle memory on overdrive, it's a neurological condition that causes huge amounts of physical distress.

TIX, Norway's Eurovision finalist this year, sang about his own experience of bullying and mental health linked to his Tourette's syndrome. Credit: AP

"Technically it's how your brain stores memory and it's over fired and over triggered - an involuntary neurological condition."

He adds: "If you're like a Ferrari going 200mph when you only need to go 100mph, so it's kind of like that. But the brain is not going faster it's just not able to filter things out and so you're left in a situation where you're overfired."

So what are tics?

Individuals experience also different kinds of tics and may not have the same tic forever, with symptoms said to "wax and wane," or change, over time.

Tics usually start in childhood, around six to seven-years-old, and can change in severity and frequency.

Environmental factors like stress, excitement, tiredness, and anxiety can have an impact on tics too.

A tic can be physical or verbal and occurs in any part of the body and in any muscle. Sometimes people have internal tics - like deep abdominal muscle tension or stomach tics.

Singer Billie Eilish has shared her experience of living with Tourette's Syndrome. Credit: AP

Tics are often divided into simple and complex categories.

Simple ones include eye blinking , grimacing, shoulder shrugging, throat clearing, sniffing, and tongue clicks.

Complex tics include jumping, touching objects and other people, repeating others' gestures, saying words or phrases out of context, repeating a sound or word.

Swearing is rare and only affects about 1 in 10 people with Tourette's syndrome.

How to get a diagnosis for Tourette's syndrome

Get in touch with your GP if you or your child starts having tics.

Many children have tics for several months before growing out of them, so a tic does not necessarily mean your child has Tourette's syndrome.

Tics need to have been present for at least a year to meet the diagnostic criteria for Tourette's.

There's no single test for Tourette's syndrome and healthcare professionals will likely carry out other tests and scans first to rule out other conditions.

To get a diagnosis, a GP may refer you to different specialists, such as a neurologist.

What is it like to live with Tourette's?

"It is a difficult condition to live with, it impacts others within the family too," Sarah Richmond-Bunnell, who has an 11-year-old son with Tourette's, said.

She told ITV News: "Josh has cycles of tics, he has the same tics but not all at the same time, he has a blink tic, a sniff tic, and a cough tic."

Sarah Richmond-Bunnell and her son Joshua. Credit: Family handout

Ms Richmond-Bunnell said: "When he has the cough one especially through Covid it was difficult. People don't understand it's Tourette's, it is quite tiring. It is involuntarily. Every time he coughs, it makes him intense."

She added: "Josh's tics, when we go out for a meal, he looks at what other people are having and his anxiety levels go up and then his tics go up. For us, it's ok, we live with it.

"When you're in a restaurant, others they don't know that and there are comments."

She said she hopes there will be a better awareness of the condition and how it is portrayed on TV shows.

"If you ask 10 people, eight out of 10 would say they swear - and it really isn't like that."

Joshua Richmond, who's 12-years-old, has several tics. Credit: Family handout

Ms Richmond-Bunnell added: "Joshua hasn't ever sworn because of his Torrette's, that's not how it is for the vast majority of people. It needs to be shown in the correct light and an accurate representation of it."

She added: "We wouldn't change him for the world I just wish there was something that would better support him."

What further help is needed to treat Tourette's?

​Emma McNally, whose son was diagnosed with Tourette's when he was nine, has told ITV News more specialist centres would benefit those who have Tourette's and their families.

She told ITV News: "In this day and age you shouldn't be fighting to get a diagnosis or to get a referral.

"I was really shocked I couldn't believe the lack of care that is available, you're getting knocked back at every door."

Since her son was discharged from hospital in March last year, because the neurologist left, there is no one at the hospital in the North West who can help treat him.

She said: "It makes you feel like you should move so that you are in the catchment area to get a referral."

A leading doctor in the NHS, Professor Chris Hollis tells Correspondent Rachel Younger: 'I think they are being totally neglected in the provision of basic services.'

Ms McNally said the gap in the medical services spurred her on to start a support group and has since launched a petition calling on the government to increase funding and support into the research of Tourettes Syndrome, which so far has more than 17,000 signatures.

She said: "If there was more specialist Tourette's centres that would mean that people would get a diagnosis and the help they need.

"If there was one in each major city in the country, if places like Nottingham and Sheffield would bring in others from nearby areas. If all the CCGs came together to create these specialist centre, it would help everyone and I'm sure it would save money in the NHS."

She added: "We have seen so many specialists, and just keep seeing the same people and they can't help us.

"It would pay for itself, all the people I have spoken to have told me their children are just not getting any care."

How do people manage their Tourette's?

Tics are involuntary but many people are able to suppress theirs for short time periods, with practice a level of control can be established.

There are methods to manage symptoms of Tourette's Syndrome.

Behavioural therapies give people the tools to learn how to change certain behaviours. Cognitive therapies also help people to change the way they think about tics.

Mr Kilgariff said: "It's all to do with how you can reduce feeling uncomfortable and therapy and medication works differently on each person and their needs."

He said that some medication can be used to help reduce the frequency and/or intensity of tics such as anti-psychotic medication which can control the amount of messages that are being sent to the brain.

Some suggest lifestyle choices can help manage symptoms - things like diet, exercise, and other therapies.

There have been some trials into neurosurgery as a way to treat very severe tics, using deep brain stimulation, but these are in the early stages.

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's 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 and creativity of Tourette's. 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.