Petition calls on support for child Tourette's sufferers left to fight alone

IMAGINE going about your day-to-day life with friends and family then out of nowhere you drop to the floor and no matter how hard you try you are unable to get back up. Or imagine having a uncontrollable spasm in your shoulder that is so painful you have to take medication to deal with it.

On top of this, then imagine when you go to your local health service, your doctor does not know what to do and there is no medical pathway to treat the problem.

This is the reality of families living with child Tourettes sufferers in Wales.

The syndrome that many people think is just out-of-place swearing is actually something so much more devastating.

Haverfordwest resident Helen Reeves-Graham has a 13-year-old daughter whose life is ruled in fear of Tourette's and the symptoms it causes – known as tics.

“We never know from one day to the next what could happen,” says Helen as we speak over the phone.

“For example one day I took my daughter into town, she was fine and then she started having drop tics so I had to try get her to a bench and then I had to leave her and run home and get the car and wheelchair.”

Because of this the family can go nowhere with their daughter without the car.

Helen has now created a petition calling on the government and health boards to provide a clear clinical pathway, medical care, and specialists for people with Tourette’s syndrome in Wales.

Currently there is only one specialist of Tourette's in the country and they only deal with adults.

A video sent into the Western Telegraph shows upsetting scenes of children suffering with the disorder.

It includes a young girl crying as she tries to battle with her tics, another of a teen having uncontrollable spasms as she sits on the couch and one image of a girl being held by a family member as she stands in the middle of a room and furiously flicks her head back in pain.

The video opens with a woman called Esther who's mother to two children one of which suffers from Tourette’s.

Esther explains: “Peter has no control over his Tourette’s and they will come and go which is known as waxing and waning.

“He is doing his GCSEs at a mainstream school and he is trying exceptionally hard. He is beautiful and brave.

“Wales has no Tourette’s specialist for children.”

In another part of the video a teen explains how her tics have got worse.

“What started as a tic in my neck back in 2015 is now all over my body, in my breathing, in my voice and most recently I have gained a stutter which is very annoying for the family and for me.”

One writes that symptoms feel like the day after over-doing it at the gym but having that exhaustive feeling all the time.

There reports of little or no support for child Tourette's sufferers in Wales

Helen went on to tell me about the trial and tribulations of trying to get her daughter help and how, at the end of it all she found there was no provision in place.

“When my daughter started having symptoms of Tourette’s I took her to the GP,” says Helen.

“The GP referred her to paediatrics which was declined at first then the symptoms started getting worse and she experienced tic attacks which look like seizures.

“When we sent a video of the seizures to the paediatrics they referred us to a neurologist but we do not have a paediatric neurologist at Withybush.

“We had to wait a couple of months for one to come across.

“Then the paediatric neurologist could not give a diagnosis because the patient has to demonstrate Tourette’s symptoms for 12 months and with my daughter it had only been six.”

In her soft spoken voice it is not an exaggeration to say Helen sounded tired as she continues to grapple with the day-to-day reality that there is no one in her community that can help with her daughter’s suffering.

“The lack of facilities or support for children in Wales is really bad.

“It’s absolutely terrible that for something so debilitating to have nobody checking on you or telling you what to experience. It’s crazy. To have nothing is not good enough.”

A Welsh Government spokesperson said the government is aware of the issue and working to tackle the problem. 

A statement from the government read: “We are committed to ensuring all children with a neurodevelopmental condition, including Tourette’s syndrome, can access the services and care they need.

"Following discussions with families about their experiences and concerns we are undertaking work to better understand the situation in Wales.

“We are also reviewing all children’s and adults’ neurodevelopmental services. This work is due to be completed by March.”

To sign the petition and call on the government to begin creating a pathway to help support Tourette's sufferers click here.

Helen runs a Facebook support group for Tourette's sufferers which you can ask to join, here.