Campaigners hope for Parliamentary debate on children's Tourette's Syndrome funding

Wigan families campaigning for greater funding for children with Tourette’s syndrome want the issue to be discussed by Parliament.

Thursday, 29th April 2021, 4:38 pm
Updated Thursday, 29th April 2021, 4:52 pm
Campaigners hope for Parliamentary debate on children's Tourette's Syndrome funding

Wigan families campaigning for greater funding for children with Tourette’s syndrome want the issue to be discussed by Parliament.

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Wigan families join campaign for more support for children with Tourette's Syndr...

A petition has been launched calling for more specialist support for children across the UK who have been diagnosed with the condition. The online campaign has passed the required 10,000 signatures for the Government to issue a written response, but campaigners have now turned their attention to hitting the 100k mark, which would require MPs to debate the matter in the House of Commons.

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Tourette’s Syndrome causes a person to make involuntary sounds and movements called tics. These include physical tics such as blinking, eye rolling, jerking the head or limbs and shoulder shrugging. Vocal tics include whistling, grunting, coughing, tongue clicking, swearing and making random or repeat sounds, words and phrases.

It usually starts during childhood, and there is no cure but treatment can help manage symptoms, which are often exacerbated by periods of stress and anxiety - issues which have been frequent during the past 12 months of the Coronavirus pandemic.

People with Tourette’s syndrome may also have obsessive compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD) or learning difficulties.

Official figures estimate that Tourette’s Syndrome affects one in 100 children, but campaigners feel the real number is far higher.

Across the country, families of young Tourette’s sufferers have been calling for more funding into research and treatment of the condition. Local campaigner Emma McNally set up the Parliamentary petition, which received a reply from the Government this month.

A spokesperson responded: “The Department of Health and Social Care funds research into conditions through the National Institute for Health Research (NIHR). NIHR welcomes funding applications for research into any aspect of human health, including Tourette’s syndrome, although it is not usual practice to ring-fence funds for particular topics or conditions.

“Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.

“Since 2018, £2.1 million has been invested into research on Tourette’s syndrome through NIHR’s research programmes. This includes a study on deep brain stimulation in people with Tourette’s syndrome and a digital behavioural intervention for tics in children and adolescents.”

The families are now on a mission to collect 100,000 signatures so that the campaign can be put before Parliament.

Emma McNally, who created the petition, said: “The petition got a response from the government, and in essence it sounded great, but in reality we all know this isn’t what is happening and lots of families are left without care. I’m now trying everything I can to get the petition to 100k signatures so that we get a debate in Parliament.”

Last month, several Wigan parents spoke to the Post’s sister title, the Wigan Observer, about the issues they face because of a lack of funding.

One mother, who asked not to be named has a 17-year-old daughter who was diagnosed with Tourette’s aged 12. She said: “We went to a paediatrician but it was dismissed. I asked for her to be referred to CAMHS when she was 12, and she was diagnosed with Tourette’s, anxiety and OCD tendencies. The only thing offered to her at the time was reverse behaviour therapy but, because of her anxiety, she couldn’t engage properly.

“Sometimes it can get really bad. She’s gone on all these years, trying to mask it, until high school when it started getting worse. But GPs can’t help her because they don’t specialise in Tourette’s. In May last year, her tics were so bad, they were 24/7. From May to September, we went to A&E twice, begging for help because she’d been begging for help, saying ‘please help me, I can’t live like this’.

“There’s nothing they can do for her. It’s really hard, because she’s under a paediatric neurologist because she’s under 18, but when you go to hospital they say she can’t be seen by the paediatric because she’s 17. This is what you’re faced with every time you seek help.”

The petition can be signed by visiting https://petition.parliament.uk/petitions/575370.

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