Channel 4 – ‘Britain’s Tourette’s Mystery…’

Hello everyone,

I hope that everyone is ok and having a good summer.

Sadly today I am going to address something that has caused a huge negative impact on the Tourette’s community recently. On July 19 2022 Channel 4 broadcasted a documentary called “Britain’s Tourette’s Mystery…” presented by Scarlett Moffatt that has caused outrage within the Tourette’s community due to the disgraceful, inaccurate and untruthful ‘facts’ that were shared in the program. It is appalling how much damage can be caused when an already misunderstood neurological condition is once again falsely represented in the media.

Not only does this undo the hard work that the charity Tourette’s Action is constantly doing to advocate for the community and educate others, but it also increases the stigma and misconceptions for children and adults with Tourettes to have to deal with in their everyday lives.

In my opinion, when someone is making a documentary about a disability it is so important for them to get their basic facts correct otherwise it will obviously cause a detrimental aftermath for people with that disability and at the end of the day it isn’t Channel 4 that is going to have to deal with the mess that they have made, it is those who have Tourettes or tic disorders who will now have to work twice as hard to be accepted and understood by those around them. 

For those of you that don’t know, Tourette’s Syndrome is a Neurological condition that you are born with that causes a person to make involuntary movements and sounds called tics.

On the contrary to what the documentary implied, you can not catch Tourette’s Syndrome like a cold! People with TS (Tourette’s syndrome) are not in any way contagious because as I said previously it is a genetic neurological condition.

The presenter Scarlett Moffatt even went as far as saying that she was “worried about catching it” which obviously shows how misinformed and uneducated she was about TS. This in itself is unacceptable as spreading inaccurate information on a large-scale media broadcast is so harmful to those that struggle on a daily basis to not only deal with their own symptoms but to also be constantly educating and correcting those who have been misled by stereotypes of the condition and from dramatised and false media reports or documentaries such as this one.

Parents have raised concerns following the broadcast as their children with TS are now worried about their teachers or classmates seeing the documentary as they may now think that they could catch it like a cold and will avoid, bully or discriminate against them.

An important piece of information that Scarlett Moffatt failed to share in the documentary is that having tics doesn’t necessarily mean that you have Tourette’s Syndrome (TS) as there are many other possible causes. For example, tics can be the result of anxiety, tic disorders or functional tics (FND). All of which are very different. They may all result in tics or tic-like movements but they often present in different ways and aren’t all Tourette’s Syndrome.

This is crucial information that definitely should have been included in the documentary as many of the people who were involved or interviewed in fact did not have TS but were struggling with one of these other conditions or disorders. To me, this definitely raises the question of why they titled it “Britain’s Tourette’s mystery…” when in fact the majority of the documentary was investigating tics or tic disorders and what has caused the rise in them instead of the focus being on Tourettes?

Another issue with Scarlett Moffatt failing to mention the difference between Tourette’s Syndrome and tic disorders is that tics disorders can sometimes only last for a short amount of time whereas TS is a life-long condition. When a person with TS becomes an adult, sometimes their symptoms can improve or sometimes they worsen, but you definitely can not suddenly “recover” from Tourettes overnight.

I know that those in the TS community now have the extra anxiety of thinking that people around them may start thinking that their tics will suddenly disappear or in fact start accusing them of just faking them and ask if they can just stop ticcing one day which is definitely not the case! 

Within the documentary, Scarlett Moffatt also met with a few influencers who have Tourette’s or tics as after reading an article online she started to believe that you could gain TS from watching TikTok’s of people with tics. This however is also incorrect as if you already have TS then it is possible that seeing someone else ticcing can make you tic more temporarily, but someone who doesn’t already have TS can’t catch it or develop it from watching someone tic on TikTok. Some of the influencers involved, like Glen Cooney (this.tourettes.guy) have already spoken out and confirmed that due to the editing process of the documentary, the majority of their beneficial and important conversations about helping young people with tics to cope were completely cut from the final edit which was very disappointing as their main goal was to educate and advocate for Tourettes as they do online. 

Tourettes is an officially recognised disability and it is illegal in the UK to discriminate against a person with Tourette’s Syndrome in any setting. It is bizarre that the executive producer, Elspeth O’Hare, who has 15 years experience of producing a wide range of documentaries and is the creative director of the Tinopolis Factual Group that claims to produce “award-winning factual” television, could have produced such a factually incorrect and damaging program as this.

Even a very small amount of research online would have shown Elspeth O’hare that a large portion of this documentary is filled with misinformation and assumptions and presents ‘facts’ with no scientific evidence to support them. I have to wonder why such an experienced creative director would have let this happen on her watch and why Channel 4, which is governed by a public service remit, could broadcast it even though they claim to “Champion unheard voices”, “Inspire change in the way we lead our lives” and “Stand up for diversity across the UK”. I believe by broadcasting this documentary they have not met their own standards and public service remit as they have marginalised and damaged the Tourettes community which is 1 in every 100 people across the UK. If after reading this blog or if you did watch the documentary in question then please take 5 minutes out of your day to visit the Ofcom website https://www.ofcom.org.uk/complaints/complain-about-tv-radio-a-website to officially complain. 

Personally, I believe that Channel 4 should make a public statement of apology to all those people that this documentary has negatively impacted of which there are many.

JoelWPhoto tweeted “You have done our community a huge amount of damage with this appallingly bad ‘documentary’. People are avoiding me because they think I’m contagious. You lied to participants. Shame on you.” Along with Lauren Reid who tweeted “I have TS. You should be utterly ashamed of this show. Children are being rejected by their peers because they think they will catch their Tourette’s. You’ve no idea how utterly devastating this has been for the Tourette’s community. You’ve put us 10 steps back in awareness.”

These are just a few of the many responses from distressed individuals across social media. 

Becca (tourettesbian) who was involved in the documentary even had one of her followers message her after receiving a worrying and misinformed message from her Boss at work.

The message said this: “Sorry to message you like this. A few of the staff saw the documentary on channel 4 the other night about Tourette’s and are now sceptical about working with you in case they catch it from you. Are you actually able to pass on Tourette’s to other people?”

This is just one of the many people that are now being questioned by families, co-workers, teachers, peers or friends about the falsehoods that this documentary from Channel 4 has created. 

I and the Tourette’s community call on Channel 4 to set the record straight and to apologise for the misinformation that they have allowed to be spread and the huge amount of damage that it has caused.

Wilamena