Dr Marianne Trent (00:00):

Most people think Tourette's means swearing. In reality, about 95% of people with Tourette's don't swear at all. So why has one of the most misunderstood neurodevelopmental conditions become defined by a symptom that most people never experience? I'm Dr. Marianne Trent, and today I'm joined by fellow clinical psychologist, Dr. Jason Codner, as we attempt to separate myth from reality. We're exploring the impact that Tourette's can have on everyday life, as well as exploring the treatments and support that can help. Hi, welcome along to Psychology Actually. I'm Dr. Marianne Trent, a qualified clinical psychologist. I'm joined here today by a fellow qualified clin psych. Hi, Jason. Please do introduce yourself.

Dr Jason Codner (00:51):

Hi, my name's Dr. Jason Codner and I'm the principal clinical psychologist at the Northamptonshire Healthcare NHS Trust. And I currently work in the adult ADHD Autumn and Tourette Service.

Dr Marianne Trent (01:03):

Thank you. Beautiful. And yeah, it was having done an episode with one of your colleagues previously that made me have a little look on your trust website, and I realised that your service existed. And I though, that's not something we've ever covered on this podcast. So could you tell us a little bit about what Tourette's is?

Dr Jason Codner (01:27):

Yeah. So our trust and our team has been in existence, gosh, for nearly 20 years now, 20 plus years. And we've always done assessments for Tourette's in that time. As a condition, Tourette's is a neurodevelopmental condition. So what that means is it usually starts in childhood and often continues on into adulthood. And it's characterised often by both motor and physical tics. They have to occur both together, so it can't just be vocal tics and it can't just be motor tics. It's got to be both sets of presentation together really. And then starting in childhood, not better explained by something else. And then once we do the assessment bit, if all the conditions are met, then we would usually give a diagnosis of Tourette's really.

Dr Marianne Trent (02:22):

Thank you. So I've already learned something because I'm sure when I last learned about it and was working with people with tick disorder, which I understand is a bit different. We were kind of grouping as a neurological disorder, but it's now though of as neurodevelopmental, Jason.

Dr Jason Codner (02:39):

Yes. Yeah. Well, I suppose if you have to get really bored. So in the DSM-5, so the Diagnostical Statistical Manual version five, which is the American sort of manual for diagnosing mental health and neurodevelopmental disorders, it falls in their. They're currently in their neurodevelopmental category. But before 2013, there wasn't a category for neurodevelopmental disorders. I think it was disease of childhood or starting in the developmental period. So the neurodevelopmental bit comes from the DSM-5, and I think it's just their umbrella term for all the conditions that started in childhood and that might continue on into adulthood.

Dr Marianne Trent (03:22):

I see. Thank you for that clarification. And I think Tourette's gets misunderstood because I don't think people realise how much of an impact it can have on your life. I know there's been lots of stuff in the media since the Netflix film called I Swear, which is amazing. I've watched it. Really, really interesting. And I also follow a really great creator called Luke Manton on LinkedIn. If people don't already follow him, I would recommend that because he has Tourette's himself. So I feel like I've learned a bit more through both of those kind of case studies, if you will. But this really can affect people's lives globally, can't it?

Dr Jason Codner (04:10):

Yeah. Yeah. And I think with the Tourette's bit, it's been a condition for a very long time. It has relatively recently changed its name. So previously in the DSM and the ICD, which is the sort of European and World Health Organization's manual for classifications, it used to be known as the Giles de la Tourette, I think is how you pronounce it. And that's where the Tourette bit comes from. So the Giles bit and just stuck with Asper really. So yeah, I think it's prevalent across the world. So lots of people will present with that. I think the bits that can make it really difficult is because the interventions for it can be quite difficult to put together definitely outside of sort of Western civilization sort of thing really, often then nothing sort of happens with it. You just get ostracised often because it's uncontrollable, but it's involuntary responses in terms of the vocal ticks and the motor tics.

(05:18):

And because they are involuntary, sometimes they can be causing offence, they can cause difficulties, they can cause a lot of pain for the individual as well, depending on the type of ticks that they might have as well. So a lot of physical pain can come about from some of them. Some can be quite extreme for the person to experience them as well really.

Dr Marianne Trent (05:40):

Yeah. So there has been a high profile example of that recently, hasn't there? With the. I think it was John was the name of the person that was featured in I Swear. And he went, I think was it with Bafters or the Golden Globes or the Oscars? It was some big award ceremony. Some big awards

Dr Jason Codner (06:02):

Were the album bit in the news.

Dr Marianne Trent (06:03):

And I think everybody in the audience was warned. We do have the star of the show here today who does have Tourette's. And so if you do hear anything, then please know that that's not someone purposefully causing offence. But of course, Tourette's almost works with kind of the subconscious and kind of prays on the thing that is the least appropriate thing to say sometimes. And that will come out. And I think there was some people of kind of an ethnic diverse background on the stage. And then he said something racist that then everybody heard. And I think the real Ferrari was not about necessarily the person. It wasn't about John. It was about the fact that I think it was BBC were broadcasting it on a delay and hadn't chose to then bleep out the expletives in that. So that was the bit that really did make the headlines.

(06:58):

And that can be difficult, can't it, for people if they are saying things they don't mean and that they haven't got control of. But people will make that kind of cognitive judgement or just a reactive judgement .

Dr Jason Codner (07:10):

Yeah. About what's going on. And yeah, I think it was the BBC had not, or whichever broadcast it was at the time, had not chosen to bleep out, I guess, that particular bit if they had put it on a delay. I didn't read too much about it at the time because sometimes there's a lot of freor and sometimes it's just easy to let the dust settle and then go back and have a look. So I'm not sure how much they were actually putting a delay on. I think that was one of the criticisms of the BBCs or it would have been more helpful.

(07:42):

So yeah, so often with inappropriate language, are we saying in terms of that, it's particularly the swearing side of things and saying things that might be offensive or upsetting to other people. It's a relatively tiny proportion of people with Tourette's that actually can struggle with that aspect of how they might express their vocal ticks. But I think because it's the most shocking and media sensationalised, that's the stuff that people tend to associate Tourette with in particular, even though of a hundred people, five to 10 might have some difficulties around expressing in terms of that. But that's the focus it tends to be in terms of that bit really. But it can be a really difficult experience for the person with Tourette's themselves because more often than not, they're just as horrified that they're using that language, but not feeling able to control, not able to stop themselves from expressing that because it doesn't, it's an involuntary sound that comes out.

(08:45):

It's involuntary words, involuntary movements. So it can make it very difficult. And I think one of the aspects with the film shows is just how isolating that can be because often you then are aware of how other people react. So you tend not to go into situations, you tend not to put yourself out there, you tend not to interact with others because the worry about saying or offending somebody or doing something can make it really difficult and that can feel really, really lonely if you feel the people around you don't understand or aren't accepting that there are things that are going to happen that are outside of your control.

Dr Marianne Trent (09:21):

Yeah. And it's making me think about, I think the first person I'd ever learned of who had this is I think I was maybe studying psychology at the time. I think it was late '90s, early 2000s. It was Pete from Big Brother. Does that ring a bell for you? Oh

Dr Jason Codner (09:36):

We got vaguely. Yes.

Dr Marianne Trent (09:38):

Big

Dr Jason Codner (09:38):

Brother.

Dr Marianne Trent (09:39):

So Nicky Graham, it was that year, Nikki Graham and Pete. And I think some of Pete's ticks would be when he became overstimulated, he'd sort of shout white goods, white goods. And that was his thing, as in your washing machine or your tumble dryer. So not necessarily going to offend anybody, but I think sometimes Tourette's gets a kind of reputation as being funny or humorous. And I think that's tricky, isn't it? Because you then aren't necessarily seeing the impact this has on your family, on your friends, on your being able to have a relationship, on your being able to work and hold down a job.

Dr Jason Codner (10:17):

Yeah. Yeah. And I think that's definitely been one of the, I suppose, unfortunate media portrayals. And for many years there were jokes and a lot of sort of humour around people who might dispress ticks or that somehow it would be funny to have that difficulty in expressing that really. On one hand, I think that's got better to some extent, although I think it is still a really big issue. And as we can see from what happened with John at the ceremony, there's still quite a lot of misunderstanding and there's still a lot of different difficulties around how do we support people with Tourette's when they're in a situation that is live, that is going to be broadcast, where there is a high likelihood, given it was John's difficulties in particular, that things that might offend or upset other people might be broadcast. And how do we protect both the person with Tourette's and how do we lessen some of the impact that might happen really in terms of having that delayed on and then maybe being able to bleep out some bits or cut away or just having a little bit of, okay, what are we going to do if, how are we going to manage?

(11:35):

How are we going to support John? Because I suppose that was the bit we didn't hear a lot about is actually he would have been absolutely horrified. And I think he did release a statement a few days later about how upsetting it is. And for him as well to be using language that as an individual, he absolutely appals and wouldn't use, but because of the Tourette's and the involuntary nature of what's happening. And then having that, not only using that language, but broadcasting it live across the millions of people who are watching it. Yeah. I'm not sure how much support John had then got from others in the BBC after that.

Dr Marianne Trent (12:12):

Yeah. And that's a really good point. Speaking clinically, sometimes I will sit and giggle with clients. And I did when I was in the NHS as well, because so much of it is about having a good relationship and also being a human. I mean, does stuff crop up that happens with people in your clinic where it is funny? Or are you always having to kind of suppress that to be very serious and respectful, Jason? I'm sorry, that's a really awkward question. No, no, no.

Dr Jason Codner (12:39):

It's fine. I think it's a really helpful one. I definitely think in our clinic, so we run a weekly clinic. We're one of the few NHS trusts that does work with adults with Tourette's. Most services, and there aren't many to be honest, tend to focus with children, but we work with adults. And you can have a really, not sure friend's the right word, but it can be really liberating I think often for clients to talk about some of the things they struggle with, but also some of the situations that have been humorous for them in terms of their Tourette's and how that might have manifest. And yes, there are other elements where it's really uncomfortable and they dislike having them and they cause them a lot of difficulties, but there are occasions I think where we've interacted with clients and they've been able to talk about the humour side of things when that's happened.

(13:38):

There may only be brief moments for them, but there have been occasions I think where sometimes expressing those things can be a moment of lightness for them rather than the sort of constant worry and anxiety, particularly when they're outside what they might feel is their safe space. So often when they're at home, that's usually the time when that sort of happens. It's less likely from what we've seen in our clinics where clients will talk about or experience that outside of being at their safe space or with people who know them really well.

Dr Marianne Trent (14:12):

Yeah. Thank you. And just kind of segueing back to Luke Manton, I really love his work because he, when he was given the diagnosis as an adult, was almost sort of told, "Oh, this is how it's going to be now. You might as well get familiar with your benefits office because you'll never work again." That's not always the case. And certainly in his case, he speaks very publicly. So I've never been his psychologist. I just follow him on social and admire his work. So he talks very publicly about his experiences and raising awareness of this, but has then built a business which is very successful. So it is possible, but it obviously it does put barriers, especially with employed work. It can put barriers in place for sufferers, can't it, Jason?

Dr Jason Codner (15:02):

Yeah. Yeah. Yeah. And I think depending on who and where you might have got your assessment and what's happening in terms of that, I know that Tourette's Action, which is the national charity for Tourette's in the UK, does a huge amount of work in terms of both training clinicians who might be interested in doing the diagnostic work, but also in terms of doing some of the intervention work around supporting people with Tourette's to help them develop a measure of control about helping them better understand their Tourette's, what's going on, and developing strategies for helping lessening some of that impact. Now, unfortunately, we don't have a cure, so we can't stop Tourette's for people, but there is often throughout somebody's life span with Tourette's a process of what we call waxing and waning. So sometimes the ticks are really prevalent and other times they're not as round as much.

(15:58):

And then something can happen and trigger that. So it could be a stress reaction, it could be anxiety, worry. All these can help increase that bit as well. And I think when the workplace element to that then can make it really difficult to either find a workplace that's accommodating or understanding enough in terms of that bit really. But absolutely Tourette's in and of itself doesn't have to be a barrier to finding work really. I think definitely more so with the Equality Act and reasonable adjustments and just even a small amount of understanding and just knowing what the myths are around Tourette's and knowing what the reality is, I think can help people pursue that life of maybe wanting to work and pursue things they're really interested in.

Dr Marianne Trent (16:48):

Yeah. And I'm always very curious about inclusion and having conversations around inclusion. I've had a podcast episode with someone that is registered blind, has a guide dog and is a trainee psychologist. Someone that uses a wheelchair, someone that's got kind of limb difference. Do you or could you imagine a time where we had a qualified HCPC psychologist with Tourette's? Or maybe there was one already and I'm just not aware

Dr Jason Codner (17:21):

Of them. Yes, it's a short answer. We could. As I said, we may already have in terms of that. I think the bits around managing, I suppose, the different presentations of Tourette's that might occur in terms of that. I think yes. Anecdotally, I know that we've, as a clinic, we've had other clinicians who've come through and wanting to really get a better understanding and trying to manage how their Tourette's and their ticks might present so that they can go on and do clinical work in terms of that bit. And they were quite keen to try and manage that so that when they were interacting with a client, they felt that they did have somewhat more of a measure of control about when they might express those ticks really. So yeah, I would not be surprised if we already did have a client and psychologist out there who already did have a diagnosis.

Dr Marianne Trent (18:17):

Amazing. It might be a case of watch this space, but if that is you, please make yourselves known to us because we would love to be able to see how that is for you. So not to be too bleak, but you've said there's no cure. Speaking as a psychologist, is there, I don't know, will formulation help? Is there any particular approach or method that can help someone to control this or make a bit of a difference for them?

Dr Jason Codner (18:44):

Yes, is a short answer. So there's two. Well, I suppose there's several approaches I think that can be really helpful. The first one is really understanding what Tourette's is and how it might impact on somebody. And I think once people who do have a diagnosis or might have that presentation, I think when they really begin to understand and get a sense of what that means both for them and how the sides are, I think those are the bits that can be really helpful in terms of empowering them to know what they can do and what they might need some more support with around that. And then once they've got the diagnosis being assessed, going into the intervention side of stuff, there's no NICE guidelines for Tourette's at the moment. So there's no guidelines around what assessment should like. There's no guidelines around what intervention should look like.

(19:38):

There are, however, some, what they call the NICE appraisal stuff. I think because of AI and the massive advances in technology, the technology appraisal side of NICE has been working a little bit faster. So there's sometimes they'll agree a technology, but they haven't got a formal guidance. So for Tourette's for children, so under 17s, there are some appraisal technologies that say that comprehensive behaviour intervention for Tourette's, which is a, I wouldn't say a cognitive behaviour based one, but it's a behavioural based intervention, which usually runs about eight to 12 sessions. There's sort of two main umbrella ones into there. There's what's known as habit reversal and exposure response in terms of the two main ones in terms of helping people to understand what's going on really. So in terms of the intervention side of stuff, if you are somebody who wants to explore that, there is what's known as a pre-monitory urge.

(20:44):

So most people or a lot of people with experienced Tourette's have a, I suppose, a sensation that their ticks are coming on. And one of the things that both of those interventions looks at is to help people begin to recognise and understand when those pre-monitory urges are about to occur and what they then can do to help sit with that and then help them to lessen the next step, which will often be expressing their ticks really. And when we talk with clients in the clinic, we tend to think of it in terms of it's a bit like having an itch and then you scratch the itch. So the itch would be the pre-monitory urge and then the tick would be you scratching it. So in the moment, it does seem to feel like it gives you some relief from the urge, but by doing the tick, you're increasing the likelihood that the next time you have that pre-monitory urge, you're more likely then to act on the tick.

(21:40):

And then what the habit reversal and the ERP is looking at is trying to help people to sit longer with the pre-monitory urge until it fades so that you don't express the tick. And there's got sort of two different ways of exploring that with somebody.

Dr Marianne Trent (21:54):

I see. So there's almost some parallel between kind of how we might work with OCD as well then, like trying to tolerate that distress a little bit longer before you take that action.

Dr Jason Codner (22:05):

Yes. Yeah. And often there is quite somewhat of an overlap between Tourette behaviours and possible OCD. So often when we work in clinic and we do work, we're trying to separate out what might be ticks and what might be an OCD behaviour in terms of some of the things we do really. And I think that sense of helping people to, I suppose, grow their hope that actually just because you might have a diagnosis of Tourette's doesn't mean that there isn't interventions. There is things that could be really supportive and helpful. I know for our service, we tend to follow the European guidelines around ticks and Tourette's because there is some European guidelines. There's just no UK ones at the moment or nice ones in terms of guidance and that. And I think it's the first, second and third line of interventions is more behaviorally based.

(23:06):

There is a little bit where they will talk about it's possible that some medications might be helpful, but it's very much a sort of an off licence prescription if that happens. And you would need usually a psychiatrist or a neuropsychiatrist who had a good sense of an understanding of that. And they will just trial and error it to help manage some of those behaviours when they're occurring really. Yeah.

Dr Marianne Trent (23:28):

Thank you. That's a really helpful overview. And I know people are always thinking about, well, who is more likely to have this? Is there anything that makes that. I know when we're looking at something like fibromyalgia or kind of polycystic ovaries or even kind of things like migraines, there's actually evidence that shows us that people with higher kind of adverse childhood scales scores for adverse events in childhood are more likely to get those conditions. Is that a parallel for Tourette's or is it kind of just random?

Dr Jason Codner (24:02):

To some extent it varies. There isn't a massive amount of research in Tourette's. Tourette's action, again, they do quite a lot of work in this area and they fund research into this area as well. There are some elements that are looking at terms of Tourette's and whether they're particular populations that it might be more occurring in. I suppose in terms of that bit where Tourette's and I suppose neurodevelopmental conditions in general really is that you typically seem to see if somebody's likely to present with Tourette's, they're likely to have possibly something else as well. So that could be a mental health difficulty, so anxiety, mood disorder, possibly OCD, but they also might present with another neurodevelopmental condition. So ADHD is often one that we can sometimes see. Autism, which is partly why our service tends to work with all three, because there is so much overlap in terms of what we tend to see in terms of the other difficulties that somebody might present with.

Dr Marianne Trent (25:11):

Thank you. And there might be a variety of reasons why people are watching or listening to this episode. And one of the options might be that they themselves think they might fulfil a diagnosis or that someone that they care about. What should someone do if they are experiencing this almost for the first time or they're trying to join up the dots?

Dr Jason Codner (25:30):

Yeah. Absolutely. Definitely going for GP because most services will require a GP referral. Depending on where you are in the country, some services may be done via neurology or neuropsychiatry if you're particularly fortunate to have neuropsych access to a neuropsychologist in your area. But GP is generally the first port of call really. And I definitely think for adults in terms of the diagnosis bit, the bit that it would be useful to think back is, has this always been something I've had? So did it start in childhood for you? And it might be that it was present in childhood, but maybe it's gone away. So sometimes we've seen clients where they may have had Tourette's tick-like behaviour in childhood, but it wasn't formally diagnosed or assessed. And when I say that, I mean in terms of they might not have done a hour long sort of assessment where they've asked them a range of questions around how often, what's it look like, what parts of your body does it seem to go in, which is what we would typically do.

(26:38):

But often what we've seen in the notes when people come to us is they might have gone to a healthcare professional, they've noticed the ticks and they've said they've also got ticks and then that's it. There's like a line or a comment and they've moved on. Some of that might be, I think, because they've historically always been very difficult to have an intervention for that. So often it was just like we've noticed ticks and then they'll move on to what brought the person through really. But definitely as an adult, I think if you're thinking about, that might explain some of the things I've struggled with. It's definitely thinking about were these present in childhood? If you're not sure you don't remember, it's worth asking parents. So sometimes people will talk about, or parents will comment about, well, they always seem to have hay fever, even though it wasn't hay fever even.

(27:24):

So they stiffed a lot or they seem to blink a lot or they had a particular twitch or movement. And as long as there was a vocal bit alongside that. And then if that's persisted for longer than a year, and then as an adult, if you're experiencing those things, then it might be worth having a conversation with the GP around. I think particularly if it causes a problem for you. For some people, we've had clients who have sort of been referred, but they've said, actually, it's who I am. Yes, it causes problems and it's difficult, but I can manage it. And they don't necessarily want to go on and get an assessment and access intervention. Whereas other clients have said, actually, this is really, really difficult and I absolutely do need some help and support around managing some of this. Even if it's to allow other people, healthcare professionals, workplace to say, this is why I struggle in these situations.

(28:19):

These are why my behaviours might come across this way.

Dr Marianne Trent (28:23):

Yeah. And obviously speaking as a qualified psychologist, both of us, we want people to be able to live as full and active life as they would want for themselves or is feasible. And as part of that, people might obviously want to get married. They might want to have children. They might, if they're female, find themselves that they're pregnant, they're expecting. And is that something that will take additional consideration for someone with Tourette's?

Dr Jason Codner (28:48):

Yeah. So it's not typical, I think for our service that we've had concerns around safeguarding in terms of maybe the extent of the Tourette's behaviour that might be going on for somebody. Often, if there was likely to be a safeguard in, I'm saying it's always the case, it would either have been Tourette's that had been present throughout childhood, in which case it wouldn't be come to our service anyway in terms of that bit. I suppose the bits where we've had more of that is more other presentations that might have caused difficulties. So functional neurological disorder in particular, which can present very similar to Tourette's in terms of what might be going on for somebody.

(29:39):

The bits that make it quite tricky though is then how long has this been going on? So did it start in childhood? Whereas typically for functional neurological disorder, it didn't start in childhood. Not saying it can't, but often something happened and since this event, these behaviours have now been present. And the difficult one on that is You can also have both. So you could have Tourette's and functional logical disorders and types of things really. I think in terms of the pregnancy side of stuff, I don't think we've had anybody that's come through our clinic who has been pregnant with Tourette's. We've had clients who've had some very painful and some very difficult ticks in terms of their motor actions, self hitting themselves, lots of pain, so almost like lock in so they can't move physically. It's almost freezing in place. Those have been quite painful ones really.

(30:42):

So there's some element of that sometimes that occurs for people really.

Dr Marianne Trent (30:47):

Okay. So given that obviously this can be quite a complicated diagnosis process and that sometimes it might look a bit like something else. Is there anything else that you need to rule in or rule out before you go with a Tourette's diagnosis, Jason?

Dr Jason Codner (31:04):

Yes. Yeah. So I think when you look at the diagnostic criteria, the bottom part of part four in terms of that is it's not better explained by something else. So there are some physical health conditions that look like it could be Tourette's, but might be something else. So for example, Huntington's in terms of that. So what we try to do then is if it comes through as an adult referral and it's come via GP, sometimes it comes other areas, but primarily it's GPs, we might ask the GP to refer one to neurology first, just to rule out any physical cause for what might be going on. Similarly, if from looking at the referral, it seems to not have had a childhood start, but may have started in adulthood after something, it might be there's a functional neurological disorder element to or FND part to it as well.

(31:56):

So that's why we might ask GPs to refer to neurology just to give them a physical health once over really to sort of rule out, okay, we don't think there's a physical basis for this. And then often they then sort of get referred back to us for the assessment side of things potentially. Yeah.

Dr Marianne Trent (32:14):

Thank you. And sometimes people are hitting their own heads and stuff and they kind of can't do that. And I think that can be scary for people at times. And knowing whether you should be trying to restrain someone or support them in that capacity, is there a general rule of thumb? Like what would be doing if someone is ticking in at risk of hurting themselves, Jason?

Dr Jason Codner (32:35):

Yeah. I think with the, I'll say extreme in terms of causing harm to themselves in terms of that bit. Where we've tended to suggest to people around that is unfortunately it does vary. For some people, if it is more likely to be a behaviour that's linked with Tourette's, so a motor tick that's going on, it can be about helping to reduce the likelihood of being in a situation where that is going to happen. So sometimes it can be where somebody is punching themselves, for example, or hitting their head with something. Sometimes it can be about, okay, how do we support that person doing to not hurt themselves? Is it around wearing something protective so they're actually not hurting themselves? Or do we give them something soft to hold? So maybe potentially it's around they're using that to hit themselves rather than a closed hand or a fist or things like that for when hitting themselves really.

(33:44):

But it's a really difficult or can be a really difficult. I think the proportion of people across Tourette's who have that does tend to be much smaller. And often when it's at that level or that extreme, that's sometimes where it might be actually maybe medication might be something that they might want to then look at and explore. Although as we've said, there isn't really a medication to help manage that, but some of the medications can be used to help make people help them feel more relaxed and therefore they're less likely to express their Tourette's. But unfortunately there isn't consistent medication that's going to help them completely cut it out. And as I said, the European guidelines would often go with behavioural interventions are more likely to have a beneficial outcome in terms of helping reduce and particularly those sort of harmful ticks that might be causing pain for people.

Dr Marianne Trent (34:39):

Yeah. And we're recording this on the day in the UK where it's been announced that there's been a lupus trial, which has been successful in mitigating people's symptoms of lupus. I would love it if in future we were able to maybe say the same about medication or treatment for Tourette's that actually did almost stop it in its tracks and made life much more manageable

Dr Jason Codner (35:01):

For people. Well, as you said, there is a. So at the moment, so I mentioned about the technology appraisal stuff before. So there is a, and I'm not advocating this at the moment because it hasn't gone through the NICE guidelines and it's not been approved, but they are looking at a wearable technology that at the moment does seem to have a good starting research base in terms of evidence that's been really helpful in terms of hugely helping reduce the amount of tick-like behaviour that somebody might be expressing really. I think NICE is still exploring and still doing their appraisal bits at the moment, but if it is as effective as, obviously it's a private company, so they say they're the best thing since sliced bread. But if the evidence can back up their claims, then yes, definitely. I think this could be a really important, almost game changing moment I think for people who are experiencing Tourette's because they'll be able to have a wearable technology that can help them significantly reduce when they might be expressing those tick behaviour and how much control they can then have over when they might be expressing what's going on for them.

Dr Marianne Trent (36:19):

That's fascinating stuff. I watched a video of someone I think of with Parkinson's either wearing this bit. I mean it's obviously a different bit of kit, but wearing the watch or the wearable and not wearing the watch. I think they were making a cup of tea in both examples and it was pulls apart. When they're wearing the tech, you wouldn't have known that this person had Parkinson's diagnosis. I would hope that whatever this device does, whether it's biofeedback, whether it's some sort of stimulation, I hope that it does really work for people so that they can kind of step out from the identity of Tourette's because I think it can kind of put a bit of a cloud. I think the two, the person and the diagnosis become quite enmeshed, I think, don't they?

Dr Jason Codner (37:09):

Yeah, definitely. And I think that's where that sort of myths bit comes in particular. And if anyone is particularly interested around some of those myths, Tourette's action has, I said, a huge amount of useful information and resources on there. I think that we even got a bleaflet of the 10 top myths for Tourette's in terms of that bit, one of which is everybody with Tourette's wears a lot and actually 95% of people with Tourettes don't swear at all. It's a very tiny percentage, but it's things like that. But I think where that's really helpful in terms of is helping people get a better understanding. And I think whether the wearable tech, from what I've seen so far, could really helpful in terms of helping bring down really severe expressions of ticks and Tourette's really to a point where somebody then can help them to better understand what's going on.

(37:59):

And once they know that it's possible to reduce the ticks and Tourettes, for me, obviously being a psychologist, that might help the behavioural side of things as well really. So they maybe not necessarily have to be completely reliant on tech or the technology, but they could have a balance between the two. So I know the battery goes and you're out and about and you can't get it recharged. Yeah, those things like that. Or unless the NHS is going to pay for it and therefore you can get it on prescription, you're going to have to buy it and it's unlikely to be cheap. Or it's not like to be as cheap as getting it on prescription is probably the best way of saying it. So again, you then have a two tier, you can afford it, you can get the treatment, you can't name nothing.

Dr Marianne Trent (38:44):

I would say I would hope that the battery life is more akin to my old Fitbit and less like my Apple Watch. My Apple Watch is terrible. It's

Dr Jason Codner (38:53):

Shocking.

Dr Marianne Trent (38:55):

This episode is not sponsored by Apple Watches. Oh, what a lovely place to leave this on. Thank you so much for being so generous with your time and thank you for your trust, for putting us in touch as well. Is there anywhere you would want people to come along and follow the trust or learn more about you and your work, Jason?

Dr Jason Codner (39:15):

So yeah, so they can obviously follow us online. We've got the Northampton Shire Healthcare NHS Trust. I think we were recently in the news because we're one of the first, I can't think of what it's called now, I think accelerated trusts. So we've got more control over our budget, about how we can use the money at the moment in terms of that bit. For our team, instead of working the adult ADHD Austin Tourette Service, I think.

Dr Marianne Trent (39:43):

Thank you so much again. And yeah, thanks for illuminating myself and our audience about this really important work that you do.

Dr Jason Codner (39:50):

Yeah. Thank you.

Dr Marianne Trent (39:52):

Thank you so much for watching and what an absolute pleasure it was to speak with Jason. I also really want to thank the comms team at the NHS Trust that Jason works for. They were so kind to me. They even sent a little good luck message today and they sent me some information about the trust. So I'd really like to share that with you. In Northamptonshire Healthcare, NHS Foundation Trust, NHFT, we provide over 200 services across Northamptonshire and some specialist services in nearby areas. Working closely with our partners, we make sure that everyone who uses our services receives caring, personalised treatment, no matter their background or situation. We employ around 5,500 dedicated staff who work hard to care for people in many ways. They work in hospitals, clinics, schools, workplaces, prisons, and visit people at home or out in the community. Whether on the frontline or in support roles, everyone plays an important part in helping others.

(40:46):

And thank you so much to the trust for allowing Jason to speak with us in his work time. Has this been a useful watch or listen to you? I do hope so. If you're not already a follower of the show, wherever you listen to your MP3 podcasts, please do take a moment to follow Psychology Actually right now. It really does help the show to grow and helps me to ensure that I can keep creating content that you find really helpful. And if you are watching on YouTube, please take a moment to subscribe, maybe hit that notification bell too, so you never miss another episode. Don't forget that we now have two episodes a week. We have our main episode, which comes out on Saturdays or Mondays, and then we've got an episode that comes out on Wednesday evenings. They're called inner work and they are now entirely free.

(41:37):

I though the content was too good not to share with you. So do take a listen, take a watch, and I would love your thoughts. Please do like, please do comment. Please do help that show to grow as well. If you've enjoyed this episode, I think you might also really enjoy the episode I did with Sky Hewitt, who is a trainee clinical psychologist who's registered blind and has a guide dog who's such a privilege to speak with her. I think you'll love that one too. The next episode of Psychology actually will be along from 10:00 AM on Saturday on YouTube and wherever you get your podcasts from 6:00 AM on Monday. Thanks for being part of my world. I'll see you soon. Be kind to yourselves. Bye.