Charities have slammed what they call "inaccurate, misleading and harmful information" broadcast in Channel 4 documentary Britain's Tourette's Mystery.
The programme's host, Scarlett Moffatt, explored the rising number of people with Tourette's Syndrome in the UK and why it's affecting so many young people. In the programme's opening sequence, Moffatt asked if she can "catch" tics associated with the condition, and questioned whether "social media is part of the problem".
But Tourettes Action, a charity led by St Helens woman Emma McNally, said the condition is not infectious or contagious, and stressed that social media platform TikTok "cannot give you Tourette's", even if it can have a "negative impact" on the neurological condition.
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The Tourettes Action CEO, whose son has the condition, said: "During Tourette's Awareness month, we worked extremely hard to raise awareness and get the real message out there, much of which we feel was undone during Channel 4's one-hour documentary. It's shocking that a condition so prevalent is still so badly misunderstood, even by some medical professionals.
"Since the show we have been contacted by so many upset people in the community stating that the program has undone all our hard work. They have used Tourette's as an entertainment topic, something we have been trying extremely hard to stop. Many are extremely concerned by the mention throughout the program about tics being contagious and not wanting to catch them."
Tourette's syndrome affects roughly 300,000 people in the UK, causes them to make involuntary sounds and movements called tics, according to the NHS. This usually starts during childhood, with one woman telling the ECHO the first sign of her condition was when her head "suddenly started jolting to the side" on the bus to college.
The Channel 4 documentary refers to the "sudden" start of symptoms among teenagers as "mysterious". Even after clarifying that Tourette's can't be caught like a cold, Moffatt, who herself experienced tics as a child before learning "to manage them", said: "Learning about how this new wave of cases could be contagious has got me worried. Doing this documentary, I am a bit nervous about catching it again."
Tourettes Action and other charities said the documentary, along with promoting "inaccurate, misleading and harmful information", provided no clear explanation of the difference between Tourette's and functional tics present in other conditions like functional neurological disorder (FND) and the neuropsychiatric condition PANDAS.
Dan McLean, CEO of PANS PANDAS UK, said: "Britain's Tourette's Mystery was an opportunity lost. A large increase in neurological conditions in children and young people is a potential healthcare crisis. The programme could have busted myths instead of broadcasting fresh ones. Scarlett Moffatt is a fine advocate for demystifying complex and stigmatised conditions, sadly the programme has bemused and hurt so many of the people it might have supported."
A statement from Tourettes Action said: "Many think that a tic is a tic, why should this matter. It fundamentally does matter. The distinction needs to be made between tics and functional tics as treatment and outcome differ greatly. It is vital that the correct diagnosis is given to ensure that the individual is put on the correct treatment path and given the support they need.
"Tourette's syndrome is still very misunderstood and when asked, most members of the public will associate it with swearing. Coprolalia - involuntary swearing or profane outbursts - is in fact not a criterion for diagnosis. For a Tourette's syndrome diagnosis, a person needs to have at least one vocal tic and multiple motor tics and they need to have had tics for more than one year."
Even when people do have an accurate diagnosis, they may struggle to access appropriate care and support with their condition. One teen, Josh Dooley, 17, has to travel 12 hours a day from his home in Wirral to school in Chester because no schools in his own borough can take him since he was bullied out of one school and another closed.
Kyla McDonald, chair of Tourette Scotland, said: "People with Tourette's deal with a difficult, often distressing, physically and mentally painful condition every day. It can be a very isolating condition and the last thing they need is for people to think they can somehow 'catch' it from them. Our members have to fight for medical care, for assistance in schools, and to be accepted by their peers and society at large. It shouldn't be so hard and the narrative of Britain's Tourette's Mystery has only made it harder."
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