A national plan to improve Tourette syndrome services
Tourette's is a complex and misunderstood condition.
And yet it’s a common one.
It is a brain disorder that affects 1 in 100 people.
That’s a similar prevalence as autism, or childhood epilepsy, but it doesn’t get the same recognition - either from the general public or from the health service.
If most people know anything about Tourette's at all, it's that it makes people swear and shout in public.
And the excellent new Bafta nominated film, I Swear, which I would recommend to all, to some degree reinforces that stereotype. In fact the vast majority of people with Tourette’s do not have a compulsion to swear. But as the film also captures they do suffer pain, anxiety and isolation.
And yet people think Tourettes is funny.
It's not.
It causes great distress, and pain.
Tourettes is not in itself a psychological condition, nor a behavioural one, nor is it caused by poor parenting.
It’s a complex neurodevelopmental condition that causes a significant psychological impact. It’s faulty brain wiring.
And it presents through tics: sudden body movements or sounds which are difficult to control.
Urges to blink, or twitch. To jerk or to jump. To sniff or cough, to shriek or make noises.
Tics can come and go, they wax and wane – twirling in circles, or throwing your head back, this month may be replaced by touching the floor every few seconds next month.
Those who suffer with it say the feeling is a bit like a sneeze, you can feel it coming and you just have to let it out.
Most will try and suppress their tics for short periods when they are in public settings like school, or work, or meetings. But it is really hard.
Try suppressing a sneeze.
It’s really uncomfortable.
And exhausting.
And very often when the pent up feelings are released they can be even more intense.
Many people with Tourette’s describe living with constant exhaustion and physical discomfort - tired from holding everything in throughout the day, and sore from the relentless tics that emerge when they’re finally in the safety of their own home.
Parents of children with tourettes will tell you that when their kids come home from school they often experience meltdowns. Outbursts of rage and violence are not uncommon.
“But they were fine all day” a teacher or a relative may say.
Little do they know. And little do they understand.
And that leaves parents feeling disbelieved; and a failure - and the children are often consumed by shame and guilt for hurting their loved ones, and their feelings.
In about 10% of cases people have an irresistible urge to swear, and say socially inappropriate things.
Imagine living with that. The stigma, the shame and the judgement.
Studies published in the British Medical Journal show having a tic disorder brings significant distress and pain.
Obviously this also has negative effects on what they describe (in language you’d only find in a medical journal) as ‘academic, social and occupational function’.
Put another way, it's annoying, it's exhausting, it hurts, and it comes across as really weird - which caused stigma and isolation.
And tics don’t come alone. People with Tourette’s typically have co‑occurring conditions, which can affect daily life as much as—or more than—the tics:
ADHD, OCD, anxiety, and depression
It can be hard to bear.
Studies show a fourfold increase in risk of death by suicide in people with Tourettes.
Symptoms usually start to emerge during early childhood. And when you seek help, the despair often deepens.
You can feel really misunderstood, because you are.
You can really feel alone, because you are.
The child that you love more than anything is in deep distress; your family and relationships are under enormous strain.
You face turmoil.
And there’s no help. Nowhere to turn.
The levels of understanding amongst teachers, GPs and health professionals is generally quite low.
And to be fair to them, they don’t know where to turn either.
There is no clinical pathway for Tourettes to follow.
There are no NICE guidelines, nor any plans to create any.
No consistent service provision.
There are no diagnostic and treatment pathways in any Welsh health board.
And remember this is a disorder that affects as many people as autism, or childhood epilepsy.
Children with significant tics are funnelled into CAMHS, with the long waits we are all familiar with.
But tourettes is not in itself a mental health condition, though it is often accompanied by one.
If there are not severe mental health conditions presenting CAMHS will be reluctant to support.
And neither CAMHS, nor paediatric services, have the expertise to support tics;
and so very often tell families will be told their child cannot be supported, leaving them with no where to turn.
They may eventually get prescribed medication, and then the focus becomes monitoring the effect of the drugs, but with little emphasis on the talking therapies that evidence shows need to accompany them.
Therapy - which should be the first line treatment - is very rarely, if ever, offered.
Many parents push for a diagnosis from the national Tourette Syndrome clinic at Great Ormond Street Hospital in London.
That not only requires a referral by CAMHS, but in Wales the agreement of the Health Board to fund it out of country.
This is hard to get, and can take years.
Many face a 5 year battle being bounced around the system – missing vital parts of their education, at what is a critical time in their life.
And even with a diagnosis there are no services to be referred to after all.
The charity Tourettes Action tells me that things are getting worse, not better.
And let us remember this effects 1 in 100 people. Yet it gets little attention?
How can it be that there are no NICE guidelines? No clinical pathway?
How is this in any way sensible?
Not only are children and adults unable to gain a diagnosis, and unable to get treatment.
But in the absence of any guidelines people are being bounced around the system, gumming up the system even more.
Studies in the BMJ show that young people with tic disorders use substantial healthcare resources as they are bounced around the system.
There is one ray of hope in my own health board of Hywel Dda where there is a Pilot of a Tourette’s Syndrome Pathway, based on good practice from Great Ormond Street.
It is imperfect - it does not offer specialist tic disorder treatment. But it does include access to Psychoeducation for young people and their carers, which can help with understanding and resilience.
Hywel Dda tells me there is no demand to develop further resources or services.
I find this hard to believe.
But even so, it does provide a model for a useful baseline. And I’d ask the Minister what she will now do to get other health boards to adopt this?
What Hywel Dda has done is simply apply existing good practice from elsewhere - which I welcome. So why aren’t others? And what is the Welsh Government going to do about it?
As studies into Tourettes published in the British Medical Journal highlight, not only is there a lack of prioritisation for tic disorders, but this is compounded by a healthcare structure which does not support a complex condition that requires a multidisciplinary approach.
We need a plan to tackle this.
I’m glad the government is making progress on its broader neurodivergence pathway. But this specific aspect of it is not showing enough progress.
There is a clear need to provide guidelines, and to services to support people with tics.
Not just children but adults too. Tourette’s is a lifelong condition, we need to do better for the children and adults within Wales who are living with Tourette syndrome.
I call on the Welsh Government to develop a national plan for Tourette's syndrome services, including commissioning clear pathways for diagnosis and treatment in every health board. It will save money that is now wasted bouncing people around the system.
I want them to press NICE to develop and publish clinical guidelines for Tourette's syndrome;
I want them to provide training and guidance for education and health professionals to improve understanding and support for those affected;
and to work with third-sector organisations, such as Tourettes Action, and experts to raise awareness and tackle stigma across communities, schools and workplaces.
I want us to take this seriously.
Because, I Swear, Tourettes is not funny.
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