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

Wigan families are backing a campaign for more funding to support children with Tourette’s syndrome.

Saturday, 13th March 2021, 4:05 pm
Young people's quality of life is suffering without support for their Tourette's symptoms

Wigan families are backing a campaign for more funding to support children with Tourette’s syndrome.

A petition has been launched calling for more specialist support for children across the UK who have been diagnosed with the condition.

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.

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Tourette’s 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.

Many Wigan families have also joined the fight.

Wigan mum Claire has a six-year-old son. He first started showing symptoms last year.

Claire said: “It started with a throat clearing sound. it was just a few times a day, but going on for a couple of weeks. Then everything exploded. He had several different sounds going on and several different movements as well.”

Claire contacted her GP, who explained that Tourette’s Syndrome could only be diagnosed after 12 months of observation.

“They reassured us that it would probably resolve itself in a few weeks time and just to monitor it,” said Claire.

“Some days, there are just a few tics which impact his life mildly, and other days they are absolutely awful and impacting every aspect of his life.”

When her son’s symptoms worsened over time, Claire was referred to a specialist.

Claire said: “They basically said to us, at this stage, it is a ‘watch and wait’. He has a review next month. Initially, they’d refer him to CAMHS (Child and adolescent Mental health services) for some coping strategies, but warned us that it might be rejected, which it was. They said they don’t currently support families whose children had Tourette’s, and that we’d been discharged from the service.

“It’s affecting my mental health as well, seeing my young child struggling in the way that he does. He struggles to get to sleep, struggles in school and children will comment on him making these sounds, which is then getting him upset, and he gets in trouble for shouting at them.

“It’s impacting everything. It’s frustrating and really distressing to know that, even when we do get that diagnosis, we’ve got a label but there’s still no support for him.”

Another Wigan mum, who asked not to be named, has a 17-year-old daughter who was diagnosed with Tourette’s aged 12, but started showing symptoms when she was nine years old.

She said: “The first signs were that she was blinking and twitching her eyes. Then she started with facial twitches and it gradually moved down to other parts of the body. She also had a couple of vocal tics, she used to grunt and sniff.

“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 to do it.

“Sometime 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.

She added: “This is what you’re faced with every time you seek help.”

The petition’s founder, Emma McNally, said; “Tourettes is a very misunderstood condition, the general public think it is a few sounds and movements and ‘what’s the big deal’, but it is so much more.

“It can be extremely painful for the individual. The continuous movements cause extreme pain but this doesn’t stop the tics, they continue throughout the pain, making it worse and worse.

“They can be extremely embarrassing for the child, causing them to suffer with social exclusion and anxiety. They interfere with every day things that others take for granted such as sleeping, writing, showering, walking, school work.

“Imagine being a child and coping with all this, and yet having no one medically to help. The figures reveal that Tourettes affects one in 100 children, I believe this figure to be much higher as lots of children are going undiagnosed or misdiagnosed.

“We are trying to urge anyone to sign the petition to help not only local children but children all over the UK.

“We are parents fighting not only for our own child but all the other children out there.”

Emma added: “There’s only a handful of specialist Tourettes centres in the whole of the UK - we need more of these to provide care for everyone. The support throughout the UK is nothing far from shocking, some areas having no support what so ever.

“Not getting a diagnosis and not getting the correct support at such an important age can lead to life long behavioural and mental health issues, which can be alleviated by having the right support from the start.

“More research would ultimately give more answers.”

MPs have also written to the Health Secretary and Wigan Borough CCG to discuss what can be done to better support families with Tourette’s Syndrome.

Yvonne Fovargue MP said: “Across the country there is a shocking lack of support services for young children.

“There is no known cure for Tourette’s Syndrome but I understand that behavioural therapy and medication can help to treat the condition.

“I have written to the Health Secretary on this issue of support services for children and hope that the parliamentary petition will raise awareness so that we can help Max and all young children across the country.”

James Grundy, the MP for Leigh, said: “Several local families have contacted me regarding the lack of both local and national provision for Tourette’s sufferers, and as a result I have written to both Wigan Clinical Commissioning Group and the Department for Health & Social Care to raise these concerns, I am currently awaiting responses from both these bodies.

“Whilst I do not sign petitions, as they have no force in law, I’m happy to help these campaigners raise awareness of the condition and seek better support for sufferers, both in Parliament, and locally.”

Dr Tim Dalton, Local GP and Chair of NHS Wigan Borough Clinical Commissioning Group said: “I am aware of the concerns of a number of local families in relation to the support available for children with Tourette’s.

“The majority of children with tics in Wigan Borough are seen by a Community Paediatrician whose area of interest is Paediatric Epilepsy and Neurology.

“Unfortunately, there is no treatment specifically designed to treat Tourette’s, but treatment may help control tics including behavioural therapy and medication, while some children may also need help for anxiety and stress.

“In Wigan Borough we are working with all partners to understand how best to support children and young people with Tourette’s and other neuro-developmental issues. We are also working with a local group of parents to improve our service offer.

“We’d be keen to hear from any children and families with feedback on how we can make sure that the service would provide the best experience possible. You can contact us via [email protected]

The Parliament petition can be signed by visiting:https://petition.parliament.uk/petitions/575370?fbclid=IwAR1f_SPHz_zzMXG9oAmrpsD1TgwQYaKzSLo7BstAdYikQp3iAxB-QLFOSkkThanks for reading. If you value what we do and are able to support us, a digital subscription is just £1 for your first month. Try us today by clicking here and viewing our offers.