More support needed for children with tics and Tourette’s, say family who had to go private for help

The family of a teenage girl who developed tics and Tourette like symptoms during the pandemic says there is a lack of support for the condition in Wales after paying to get private help.

Jenna Bristow, 14, from Pentrecwrt near Llandysul, started developing tic-like symptoms in February 2021. What started out as a neck twitch soon developed into something more, with her symptoms now including tongue clicking, swearing, eye rolling and even hitting herself. 

"It all started in February. I was never really sure why it started," she says. "It basically feels like a cough that’s building up and you have to let it out and it’s so uncomfortable. I usually have the pretty common tics like head twitching, head jerking, whistling is a really common one for me or roll my eyes."

When the condition was at its worst, Jenna would have seizures and tic-attacks, something which has affected her independence. "I don't ride my bike now because I fall off and that scares me. I don't like being home by myself for long periods of time because it can be dangerous for me."

According to the charity Tourette’s Action, there are almost 300,000 people in the United Kingdom living with tics or Tourette’s, but there is currently no specialist in Wales for children.

A petition calling on the Welsh Government for more support, experts and a clear, clinical referral pathway for childhood tics and Tourette’s has gained more than 10,000 signatures and is expected to be discussed in the Senedd.

After showing signs of tics, Jenna was referred to the Child and Adolescent Mental Health Services (CAMHS). Her mother, Shelly, told S4C’s Y Byd ar Bedwar they’re still waiting for answers on Jenna’s condition after just one initial session through the Hywel Dda Health Board last summer. The 14-year-old has since had sessions with a private therapist in London who has helped her manage her tics.

“CAMHS seems to be inundated with children that are suffering and in need and unfortunately, Jenna didn’t seem as severe as some of them.” says Shelly.

Jenna Bristow developed tics and symptoms of Tourette's during the height of the pandemic. Credit: Jenna Bristow

“For me I’d prefer to have them say, ‘listen we’re really inundated with children that are suffering, here’s some suggestions on what you can do to help Jenna. We’re not going to see her for at least a year or two maybe’, but at the beginning you’ve got no idea so you just sit and wait. And so we struggled until we felt we got to the point where it was just being ridiculous and we decided to find somebody ourselves.”

“The help from doctors, a diagnosis, CAMHS, hasn’t really been helpful at all because they're so full because their waiting lists are so long,” says Jenna.

“Even though my case is quite severe compared to other tic cases, I’m still not a priority in the doctor’s eyes… I’ve been waiting for a year.”

In response to Jenna’s story, Dr Warren Lloyd, Associate Medical Director and Clinical Director for Mental Health and Learning Disabilities for Hywel Dda University Health Board said: "We are unable to comment on individual patient care. 

 "If any person has any specific concerns regarding their mental health care and treatment they should contact their respective care co-ordinator, Local Mental Health Team or Patient Support Services."

Jenna says she's still waiting for answers despite having tics for more than a year. Credit: Jenna Bristow

Tic and Tourette’s experts at Great Ormond Street Hospital in London have recorded a rise in the number of children and teenagers experiencing tic symptoms and tic-attacks since the beginning of the pandemic. Before Covid, the centre would normally receive four to six referrals a year, but by January 2021 they received three to four referrals per week. 

A Welsh Government spokesperson, said: “We are committed to working with families of young people who have Tourette’s Syndrome to support the development of services.

As demand for assessment and support services continues to increase, we are reviewing all neurodevelopment services, to identify the demand, capacity and design of services for children and young people.  The review is due to be completed by March 2022. In the summer we will also hold a public consultation on our plans for a new neurodevelopment conditions action plan, this will include establishing a Ministerial Neurodevelopment Conditions expert group.”

Watch the full story on Y Byd ar Bedwar at 8.25pm, 23 February on S4C and S4C Clic. The programme has English subtitles.