No, it’s not just swearing: Why we need more support for children with Tourette’s syndrome in Wales

Helen Reeves

I live in Pembrokeshire with my three children. In August of last year, my 13-year-old daughter developed Tourettes syndrome.

It started with a neck shrug and then very rapidly it progressed to lots of vocal tics including swearing, as well as motor tics – including self-harming tics, which involved punching herself and things next to her.

I took my daughter to the GP when the neck shrugging was causing her pain. The GP sent an urgent referral to paediatrics at our local hospital. This referral was initially rejected. The tics continued to escalate and my daughter began to suffer attacks that resemble seizures. I sent a video clip and from that we were able to see a paediatrician.

I was told there is a Tourette’s clinic here in Wales, but there isn’t. The paediatrician instead referred my daughter to a neurologist who visits our local hospital and isn’t based here.

The neurologist gave a provisional diagnosis of Tourettes syndrome. To get a diagnosis motor and vocal tics have to have been present for a year. My daughter was discharged from the neurologist the same day.

My daughter began to have drop tics and to lose movement in her limbs, and has been a wheelchair user for a few months now.

New symptoms arise all the time and we have no idea if it’s Tourettes causing it or if there is something else. It’s a constant worry and there is no one to advise and support.

Having proper medical care should not need to be debated. It is horrendous watching your child and not be able to do anything to help them.

No control

Tourettes syndrome is not a rare condition. It affects one in 100 children, yet there are very few Tourettes specialists in the UK. In Wales we have one specialist who doesn’t see children.

People don’t understand what Tourettes is and have a perceived image due to what they see on media such as television.

Tourettes syndrome isn’t funny. It isn’t ‘just swearing’. In fact only around 10 % of people with Tourettes have coprolalia (swearing) as a symptom.

Tourette Syndrome is a neurological disorder and affects the nervous system. It causes people to have ‘tics’. Tics are sudden, repetitive movements or sounds. People who have tics cannot stop their body from doing these things. They have absolutely no control over them which for anyone, let alone a child, can be frightening.

Tourettes can mean living your life in pain due to repetitive movements that you have no control over and self-harming tics such as biting and punching. Tourettes can mean loss of mobility and needing to use a wheelchair, it can mean loss of movement in your limbs and tic attacks that can last hours and resemble seizures. Lots of children with Tourettes find it difficult to attend school. Tourettes syndrome often has comorbidities such as ADHD and autism, anxiety and sleep difficulties.

Waiting

I have been shocked by the lack of medical care and created a support group specifically for Wales. Some of families have had to travel to London to get care.

Lots of families can’t even get seen by their GP and have been told to wait and see and the symptoms may disappear.

There are a handful of specialist centres dotted around the UK but unfortunately, most of them will now only see people from their area, which means that many children are left with no provision, often meaning they find it extremely hard to get a diagnosis or any medical care at all.

We would like more Tourette’s specialist centres throughout the UK, meaning that EVERY child can access treatment!

For Wales, we want specialist provision and centres that can be accessed by people in Wales without having to travel and without putting extra pressure on paediatricians.

Even though they may be supportive, many are not Tourette’s specialists and are also inundated with children needing to be seen by them with huge waiting lists, sometimes years long.

I and thousands of other families shouldn’t be having to fight to get medical care for our children. Surely it’s a human right to get medical care for a condition that is so debilitating?

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