Parents in Wales call on Senedd to help children with Tourette's syndrome
Parents are speaking out against the lack of provision or support for children in Wales who suffer with Tourette's syndrome
Parents in Wales have been calling on the Senedd to improve support for children who suffer with Tourette syndrome.
Currently there is no provision or support for children here in Wales who suffer with Tourette's. Although it affects one in one hundred school children now, the condition has the same prevalence as autism and completely consumes the lives of these children and their families.
Speaking on GB News, Helen Reeves-Graham, mother of a teenager with Tourette's syndrome said "To watch your child go from being a normal, independent 13 year old girl to, you know, not being able to to hold a drink or, you know, sometimes I can't go too close to her because she'll she doesn't mean to, but she'll knock you in the head."
"You know, it's it's horrible. I can't do anything to help her and to have nobody that I can pick up the phone and say, You know, this is happening. Is this Tourette's? Because, you know, your mind starts going over time?" said Helen Reeves-Graham.
Mother, Helen Reeves-Graham explained: "I got this something else swinging, you know, what is it? What am I supposed to do? Who the hell do I talk to? You know, and there isn't any party, you know, apart from Thank God for support groups, because otherwise I don't know what I would have done."
Helen Reeves-Graham is a member of a group of parents who have called on the Senedd to appoint a specialist that is available to everybody in Wales.
"So regardless of where you live, regardless of your age, you know, even if it was somebody that was a travelling specialist, you know, but to be able to have access to somebody would be brilliant" said Helen Reeves-Graham.
" I think the very first thing that we need is guidelines. So a proper medical pathway because I have people contacting me all the time who can't even get their GP to see their children or themselves. And then if they get to see a GP, the GP's make an referrals and they're very often being bounced back. It really does seem to be a postcode lottery of whether you actually get seen by any party."
The Welsh Government say they are reviewing the neurodevelopment development services here in Wales, but that review will continue until March of next year. There is one specialist for Tourette's in Wales, but they only support adults with the condition.
Abigail Luxford-Noyes, a student living with Functional Neurological Disorder, said "I see myself as someone who can genuinely generally cope with tics and all the other bits that I have so I can generally cope. But when I see children who are young, you know, going through school and really struggling with it, it really tugs at me and it's so upsetting."
"I would see myself as kind of like a strong person. I am able to cope with it. But you see these little kids, you know, tend to, however old crying in their mum's arms, crying in their dad's arms because they physically cannot stop it," said Abigail Luxford-Noyes.
"So I was that scared 16 year old who didn't understand what was going on and didn't understand why I was having this. And there were times where I broke down in tears because I just physically was so drained from it. And that's the main thing that I want to put across is that this is incredibly draining and this petition is going to help so many people and so many children", explained Abigail Luxford-Noyes.
To get an appointment for Tourette syndrome across the UK, there are people facing waiting times of around 12 to 18 months. The condition affects around three hundred thousand adults and children UK wide.