TIC Hull, Lincolnshire & Yorkshire is ‘like a family’ but it ‘just hasn’t got the money coming in’
Cynthia Bennett and her daughter Navaeh, age 10, who has been supported by the charity(Image: Cynthia Bennett)
A charity that supports children and parents with Tourette’s and ADHD has said it is in a funding crisis. TIC Hull, Lincolnshire & Yorkshire has been described as a “lifeline” by the parents who use its support groups.
Despite receiving a steady stream of new referrals from GPs and health services, the charity does not receive any public funding.
Tourette Syndrome is an inherited neurological condition causing involuntary and uncontrollable motor and vocal tics. TIC aims to offer a safe place to socialise, give advice, and advocate for people with the condition. They help children with Tourette’s, children with ADHD, as well as teenagers.
Cynthia and Navaeh’s story – ‘They gave me a voice’
Cynthia Bennett said her 10-year-old daughter Navaeh has learning difficulties and ADHD and attends a youth group at TIC. “It’s given her a setting where she can be completely herself without judgment, or being looked at a funny way,” she said.
“If you go into play areas or stuff like that you get parents who think you’ve got a naughty child. With ADHD, it’s the way my daughter’s brain works, it’s not the way she is as a person.
“They have just helped to educate me as well. I didn’t know much about ADHD until asking little questions like why my daughter was doing certain things, and I couldn’t understand what was going on.
“With TIC, honestly, they have just helped so much. I can’t even express how much it has meant – there has been a lot of tears, let’s put it that way.
“They are the first professional setting that has seen me and my daughter and see what I see. They gave me a voice and a lot of confidence to fight a broken system in the school setting.”
Cynthia added: “Thanks to TIC, I’ve made a lot of friends in a similar situation and we all help and support each other too. It has created a space for us parents to talk amongst other parents and feel we are not alone in our struggles.”
Sarah and George’s story – ‘It’s been a lifeline’
Sarah Wright said her son George, 12, has been attending a youth group at TIC for a year and five months, and it has made a “massive diffference”. “George does not want to leave the house for anything, or go anywhere, and that is the one place he will go religiously once a week,” she said.
“He plays with the other children who are like him and it doesn’t matter if he is twitching or saying stuff, he is just accepted because they are all the same.” Sarah said he was diagnosed last January and has the form of Tourette’s known as coprolalia, which means he sometimes makes involuntary noises or words.
The mum said it was hard for her son to transition to secondary school because he was separated from a lot of his primary school friends who understood his Tourette’s. Of his tics, Sarah said he just “can’t help it” and sometimes will “say stuff or make a silly noise”.
She added the charity “has literally been a lifeline for me and George” and she didn’t know how she would have got through the past year without the support. “We’ve been through some right ups and downs,” she said.
Ravenna’s story – from service user to trustee
Ravenna Dagger said she first heard about the charity when she was seeking support for her two children, who both have Tourette’s. She said it has “absolutely changed their lives”.
“They wouldn’t have the confidence they’ve got now, the abilities to go ahead and navigate the world as well as they do without the things the charity has put in place for them,” she said.
“They are much, much happier. The support is there, and it is like a family as well.”
Ravenna said she first joined TIC when it was a small charity holding support meetings once a month with its founders, Kim Mitchell and Beverley Wright.
Nowadays, Ravenna said the charity runs four youth groups every week, including one for children with Tourette’s, one for children with ADHD, and one for teenagers. The fourth is a sibling support group for children who have a brother or a sister with either of the conditions.
After noticing the profoundly positively impact the charity had on her children, Ravenna is now Chair of Trustees. She said the lack of funding was “heartbreaking”.
Ravenna said: “Services won’t be able to go on in the same capacity at all. We are going to lose the premises if we don’t secure anything that can help with rent, which has risen as well.”
The charity currently has three paid staff members, but if they are lost it will limit what can be done. Ravenna said the charity would continue to operate, but “not as we have have been” and services would be “very hard-pressed”.
Ravenna said the charity gets “30 to 40 extra people every month or so” and it is hard to keep up. She added: “So many doctors are referring new diagnoses to us and the kids and the families need the support. We just haven’t got the money coming in.”
In a recent doctor’s appointment, Ravenna said she had the surreal experience of having her own daughter referred to the charity when she received a secondary diagnosis. “I sat and I smiled at the specialist and I said, ‘That’s wonderful that you are doing that, but I’m the Chair.'”
The charity has launched a fundraiser on Just Giving, ‘Keep TIC Going’. It has also asked businesses to get in touch if they can offer sponsorships.
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