The mother of a young girl in Newport who is suspected to have Tourette’s syndrome is appealing for more support for people with the condition to made available in Wales.

11-year-old Caitlin Wivell, was just about to finish her time in primary school when she found that her neck was making involuntary movements while she was seeing friends on Friday, June 18.

She told her mother, Sinead Stimpson, who at first had no idea what the problem was.

Within one hour of raising the issue to her mother, the involuntary movements had progressed along Caitlin’s shoulders and her arms, and she was saying random words, leading Mrs Stimpson to take Caitlin to hospital after initially calling 111.

“We were triaged by a nurse who then printed out some information from the NHS website about Tourette’s syndrome,” said Mrs Stimpson.

“It was nothing massively informative or insightful for somebody with Tourette's or with suspected Tourette’s, it was just the information you get from NHS direct.

“We waited around in the hospital for eight hours until a doctor did some neurological examination and said 'yeah, this is likely to be Tourette’s, but we can't do anything for you here'.”

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Mrs Stimpson took Caitlin to a GP who admitted that they did not know what to do about the condition and referred her to a paediatrician, who confirmed she had a tic disorder - but would have to wait six months before going to a clinic.

It can not yet be confirmed if Caitlin has Tourette’s, as she needs to have experienced physical and vocal tics for at least a year.

Tourette’s affects one out of every 100 children – similar levels to those affected by Autism.

The syndrome is often portrayed in the media for comic effect, leading many to believe that the condition only involves involuntary swearing.

Howveer, only around 10 per cent of those affected have coprolalia (involuntary swearing), something Caitlin does suffer from.

She has also developed non-epileptic seizures and has been having difficulty falling asleep.

“Caitlin was the final months of year six and was being given a little bit of freedom to go out with friends and then this happened so I've had to kind of rein it back in," Mrs Stimpson continued.

“So, she's feeling like she's being punished for having this disorder.

“We've had several teary nights where she's just wants it all to disappear.

“She doesn't tic during the night while she sleeps so thankfully she does get some rest, but to get to that point is quite a difficult journey for her.

“She has been a real trooper, this hasn't put her off going places or doing things.

“She just needs a little bit more time to get stuff done.”

There is a worry about how Caitlin will experience secondary school – a learning curve for many children even without a condition as potentially disruptive as Tourette’s.

Her condition means she sometimes throws things, something that will be considered in a school environment.

This particular issue was managed at her primary school by giving her a soft toy so that heavier object would not be thrown.

Managing Caitlin’s condition is made more difficult by the fact there is very little support in Wales for children - and indeed adults - with Tourette’s.

A petition has been set up by another mother in Wales whose daughter is afflicted by Tourette’s, Helen Graham, to be sent to the Welsh Government urging them to provide more support to people with Tourette’s.

“There needs to be some sort of clinical pathway to provide support to those suffering from Tourette’s and the families trying to deal with it,” said Mrs Stimpson.

“A lot of the treatment is almost like cognitive behavioural therapy things dealing with the mental health side of Tourette’s.

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“The families just need support to deal with the onset of it and how to go about navigating your lives around this disorder.

“We've had no information really about what it is, apart from a printout from the NHS which anybody can find, which doesn't give you any real insight into living with the condition.

“And then Google searches, which I struggle with using a lot of information I find on there because I don't know the reliability of the information being provided.

“There needs to be more provision, almost like an explanation of what it is, what it can manifest and how you can go about doing everyday things.

“There are support groups on Facebook and there is a sense of community,  in a way that we ask each other for advice.

“But we're literally just trying to fumble around in the dark, there’s not anything being shared with us or told to us by any kind of professionals.

“It's just hacks that we're all coming up with to get through on a daily basis.”

Ms Graham had set up a petition for the UK Government, but it failed to attract enough signatures to be raised in Parliament.

The petition to the Welsh Government needs significantly fewer signatures (10,000) for it to be debated, and there is hope that this petition will be more successful.

At the time of writing the petition has 1,519 signatures and will run until February 18.

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