The Aspiring Psychologist Podcast - What Is Tourette's Syndrome Really Like? A Clinical Psychologist Explains

Starting point is 00:00:00 Most people think Tourette's means swearing. In reality, about 95% of people with Tourette's don't swear at all. So why is 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 Kodner 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.

Starting point is 00:00:37 Hi, welcome along to psychology actually. I'm Dr. Marianne Trent, a qualified clinical psychologist. I'm joined here today by a fellow qualified clincyc. Hi, Jason. Please do introduce yourself. Hi, my name's Dr Jason Kodner, and I'm the principal clinical psychologist at the Northamptonshire Healthcare NHS Trust, and I currently work in the adult ADHD Autum and Tourette Service.

Starting point is 00:01:03 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 thought, that's not something we've ever covered on this podcast. So could you tell us a little bit about what Tourette's is? Yes, so our trust and our team has been in existence of course for nearly 20. years now, 20 plus years and we've always done assessments for Tourette's in that time. As a condition,

Starting point is 00:01:40 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 characterized often by both motor and physical ticks. They have to occur both together so it can't just be vocal and it can't just be motor ticks. 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 Touretti.

Starting point is 00:02:21 Thank you. So I've already learned something because I'm sure when I last learned about it was working with tick disorder, which I understand is a bit different. We were we were kind of grouping as a neurological disorder but it's now it's kind of it's now thought of as neurodevelopmental Jason yes yeah well it's I suppose if you want to get really boy so in the DSM-5 so the Diagnostical Statistical Manual version 5 which is the American sort of manual for diagnosing mental health and neurodevelopmental disorders it falls in their new they're currently in their neurodevelopmental category but

Starting point is 00:03:00 before 2013, there wasn't a category for neurodevelopmental disorders. It was, 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. I see. Thank you for that clarification. And, you know, 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.

Starting point is 00:03:47 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? Yeah, yeah. And I think with the Tourette's bit,

Starting point is 00:04:14 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 Organisation'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 on, so the Jiles bit, bit, and just stuck with that's bit really. So yeah, I think it's prevalent across the world.

Starting point is 00:04:45 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 gets nothing sort of happens with it you just get ostracized often because it's uncontrollable but it's involuntary responses in terms of the vocal ticks and the motor ticks and because they are involuntary sometimes they can be causing offense 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.

Starting point is 00:05:34 Some can be quite extreme for the person's experiencing them as well, really. 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 the BAFTAs or the Golden Globes or the Oscars? It was some big award ceremony. Some big awards were there. I've been in the news. And I think everybody in the audience was warned. You know, we do have the star of the show here today who does have Tourette's.

Starting point is 00:06:09 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, praise 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 for Aure was not about necessarily the person. It wasn't about John. It was about the fact that the, I think it was, the 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. And that can be

Starting point is 00:06:59 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 judgment or just a reactive judgment. Yeah, about what's going on. And it's and yeah, I think it was the BBC had not, or whichever a broadcaster 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'm not, didn't be too much about it at the time because sometimes there's a lot of free-or 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 BBC's all it would have been more helpful but anyway, so yeah,

Starting point is 00:07:42 so often with inappropriate language are we saying in terms of that it's, uh, particularly the swearing side of things and saying things that might be offensive or upset into 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 tics. But I think because it's the most shocking and media ex-sensationalized, that's the stuff that people tend to associate Tourette with in particular, that even though, you know, of, you know, 100 people, you know, 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

Starting point is 00:08:35 language, but not feeling able to control, not able to stop themselves from expressing that because it doesn't, you know, I said it's an involuntary sound that comes out, it's involuntary words, involuntary movement. So it can make it very difficult. And I think one of the aspects of 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 something, somebody or doing something can make it really difficult. And that can fail. really lonely if you feel the people around you don't understand or aren't accepting that

Starting point is 00:09:16 there are things that are going to happen that are outside of your control. 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? And we got it vaguely, yes. I remember Big Brother, but yeah, yeah. So Nikki Graham, it was that year. Ricky Graham and Pete and Pete, I think some of Pete's ticks would be when he became overstimulated, he'd sort of shout, shout white goods, and like that was his thing, like as in, you know, like your washing machine or your tumble dryer. So not necessarily going to offend anybody,

Starting point is 00:09:56 but, you know, 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. Yeah, yeah. And I think that's definitely been one of the, and I suppose unfortunate media portrayals. And for many years, there were jokes

Starting point is 00:10:29 and a lot of sort of humour around people who might express ticks or that somehow it would be funny to have that difficulty in the expression. in that really. I, 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. 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 And 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

Starting point is 00:11:22 for 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, how are we going to support John? Because I suppose that was a 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 a individual he absolutely abhors 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

Starting point is 00:12:03 the millions of people who are watching it yeah I'm not sure how much support John had then got from you know others and the BBC see after that. Yeah, that's a really good, really good point. Speaking clinically, you know, 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. No, no, no, no. I think it's a really helpful one.

Starting point is 00:12:42 It's definitely thinking our clinic, so we run a weekly clinic with 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, it's not sure fun's 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 the 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.

Starting point is 00:13:29 is, 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. There might 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, or 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 in their safe space or with people who know them really well. Yeah, thank you. And, you know, just kind of segueing back to Luke

Starting point is 00:14:17 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 know, you might as well, get familiar with your benefits office because you'll likely you'll never work again, you know. That's not always the case. And certainly in his case, he speaks very publicly. So I've never, I've never been his psychologist. I'm not, 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,

Starting point is 00:15:01 can't it, Jason? 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,

Starting point is 00:15:26 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 lifespan 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. 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

Starting point is 00:16:11 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 a, 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 I'm really interested in. Yeah, and I'm always very curious about inclusion and having conversations around inclusion, You know, I've had a podcast episode with someone that is registered blind, has a guide dog and is a trainee psychologist, you know, someone that uses a wheelchair, someone that's got kind of limb difference.

Starting point is 00:17:11 Like, do you or could you imagine a time where we had, you know, a qualified HCPC psychologist with Touret. Or maybe there was one already and I'm just not aware of them. Yes, it's a short answer. We could. We may, 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

Starting point is 00:17:43 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 the 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

Starting point is 00:18:13 a client psychologist out there who already did have a diagnosis. Amazing, it might be a case of watch this space. But if that is you, please make yourself known to us because we would love to be able to see how that is for you. So, you know, 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?

Starting point is 00:18:43 Yes, is a short answer. So there's two, well, I'm supposed to, 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 of it, 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 Sajima are, I think those, the bits that can be really helpful in terms and 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.

Starting point is 00:19:31 So there's no guidelines around what assessment should like. There's no guidelines around what intervention should look like. There are, however, some what they call the nice appraisal stuff. So there's some, I think because of AI and the massive advances in technology, they're, the technology appraisal side of Nice has been working a little bit faster. So 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 want to say, cognitive behavioural

Starting point is 00:20:13 boast one, but it's a behavioural boast intervention, which usually, you run to 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-monetary urge. So most people or a lot of people with experienced Tourette's have,

Starting point is 00:20:48 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 recognize and understand when those premonitory urges are about to occur and what they then can do to help sit with that and then help them to lessen that 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 premonitory 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

Starting point is 00:21:36 premonit urge, you're more likely then to act on the tick. And then what the habit reversal and the ERP is looking at is trying to help people to sit longer with the premonetary urge until it fades so that you don't express the tick and there's got sort of two different ways of sort of exploring that with somebody. I see, 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. Yes, yeah. And I, and often there is quite a somewhat of an overlap between Touret 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.

Starting point is 00:22:27 And I think that sense of helping people to, I suppose, grow their hope that actually just because you might have a diagnosis of threats 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 I think it's the first, second and third line of interventions is more behaviourally based. 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.

Starting point is 00:23:13 of an off-licence prescription if that happens and you would need a 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 behaviors when they're occurring really. Yeah, 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, you know, I know when we're looking at something like fibromyalgia or kind of polycystic recoveries 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

Starting point is 00:23:55 likely to get those conditions. Is that a parallel for Tourette's or is it kind of just random? To some extent it varies. There isn't a massive amount of research in 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 how, 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 like, to present with Tourette's, they're likely to have possibly something else as well.

Starting point is 00:24:46 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 overlapping in terms of what we tend to see in terms of the other difficulties that somebody might present with. 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 fulfill, you know, a diagnosis or that someone that they care about. What should someone do if they are, you know, experiencing this almost for the first time or they're trying to join up the dots?

Starting point is 00:25:30 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 newer psychiatry, if you're particularly fortunate to have access to a neurosychologist in your area. But GP is generally the first port of core, really. And I definitely think for adults in terms of the diagnosis,

Starting point is 00:25:56 but the bits 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? 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 well 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 which is where we would

Starting point is 00:26:36 typically do. 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 that's it. There's like a line or a comment and they've moved on. Some of that might be, I think, because there's 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 bought 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 whether he's present in childhood.

Starting point is 00:27:13 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 fevers. So they sniffed a lot or they seemed 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.

Starting point is 00:27:45 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, that 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,

Starting point is 00:28:16 to say this is why I struggle in these situations. These are why my behaviours might come across this way. 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, you know, is that something that will take additional consideration for someone with Tourette's? Yeah, so it's not typical, I think, for our service that we have had concerns around safeguarding in terms of maybe the extent of the Tourette's

Starting point is 00:29:03 behaviour that might be going on for somebody. Often if there was likely to be a safeguarding inn, 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

Starting point is 00:29:33 can present very similar to Tourette's in terms of what might be going on for somebody. 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 other difficult one on that is you can also have both. So you could have Tourette's, and functional and logical disorders at times of things really. I think in terms of the pregnancy side of stuff, we, I don't think we've had anybody that's come through our clinic

Starting point is 00:30:12 who has been pregnant with Tourette. 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 a lock-in so they can't move physically. It's almost freezing in place. Those have been quite painful ones really. So there's some element of that sometimes that occurs for people really.

Starting point is 00:30:47 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 kind of need to rule in or rule out before you go, with a Tourette's diagnosis, Jason? Yes, yeah. So I think when you look at the diagnostic criteria, the bottom part of Part 4 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,

Starting point is 00:31:18 but might be something else. So for example, Huntingdon's in terms of that. So where 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 on to neurology first just to rule out any physical calls for what might be going on.

Starting point is 00:31:40 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 an functional neurological disorder element or FND part to it as well. 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.

Starting point is 00:32:08 And then often they then sort of get referred back to us for the assessment side of things potentially. Yeah, 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 ought we be doing if someone is ticking and at risk of hurting themselves, Jason?

Starting point is 00:32:35 Yeah. I think with the 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 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.

Starting point is 00:33:08 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 to not hurt themselves? is it around wearing something protective? So they're actually not hurt 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.

Starting point is 00:33:43 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.

Starting point is 00:34:18 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 and 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. Yeah, and we're recording this on the day in the UK where it's been announced that has 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 for people.

Starting point is 00:35:01 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 be, 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 things slice bread, but if the evidence can back up their claims, then yes, definitely, I think this

Starting point is 00:35:58 could be a really important, almost game-changing moment, I think, for people who are experiencing Tourette's because they're 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. That's fascinating stuff and I watched a video of someone, I think of with Parkinson's, either wearing this bit of, obviously a different bit of kit, but wearing the watch or the wearable and not wearing the watch. And I think they were making a cup of tea in both examples. And it was, you know, poles apart.

Starting point is 00:36:39 When they're wearing the tech, they wouldn't, you wouldn't have known that this person had Parkinson's diagnosis. And I would hope that this, 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 it can kind of put a bit of a cloud and I think the two the person and the diagnosis become quite enmeshed I think don't they yeah definitely and I think that's where that sort of myths bit comes in particular and if you know anyone is particularly interested around some of

Starting point is 00:37:16 those myths Tourette's action has I said a huge amount of useful information and resorts on there. I think they've even got like a leaflet of the 10 top myths for Tourette's in terms of that bit, one of which is everybody with Tourette swears a lot and actually 95% of people with threats 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. And once they know that there is possible to reduce the ticks and Tourette's,

Starting point is 00:38:03 for me, obviously being a psychologist, I might help the behavioral 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 be charged. Yeah, there's things like that. Or unless the NHS is going to pay for it, and therefore you can get it on prescription, you can have to buy it and it's unlikely to be cheap.

Starting point is 00:38:32 Yeah. Or it's not like to be as cheap as getting it on prescription. It's probably the best right of selling it. So again, you then have a two-tier. You can afford it. You can get the treatment. You can't. I would say I would hope that the battery life is more akin to my old Fitbit

Starting point is 00:38:48 and less like my Apple watch. my Apple Watch. Yes. Terrible. It's shocking. It's like, oh, this episode is not sponsored by Apple Watches. 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

Starting point is 00:39:06 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? Yeah. So yeah, so they can obviously follow us online. We've got the Northamptonshire Healthcare and I think we were recently in the news because we're one of the first, I can't think what'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.

Starting point is 00:39:36 For our team, I said of working the adult ADHD, awesome and Tourette service, I think. Thank you so much again. And yeah, thanks for illuminating myself and our audience about this really important work that you do. Yeah, that's what I thank you. Thank you so much for watching and what an absolute pleasure it was to speak with Jason. I also really want to thank the cons 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 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 close to

Starting point is 00:40:20 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 front line or in support roles, everyone plays an important part in helping others. 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 podcast, please do take a moment

Starting point is 00:41:02 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. I thought 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.

Starting point is 00:41:50 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. It's such a privilege to speak with her. I think you'll love that one too.

The Aspiring Psychologist Podcast - What Is Tourette's Syndrome Really Like? A Clinical Psychologist Explains

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