In this In Conversation podcast, Dr. Seonaid Anderson is joined by Dr. Charlotte Hall, Dr. Tammy Hedderly, Joe Kilgariff, and Lisa Rudge for a round table discussion on Tics and Tic Disorders, such as Tourette Syndrome.
Discussion points include:
- The prevalence of Tics and Tic Disorders and to what extent are Tics and Tic Disorders still a misunderstood condition.
- Diagnosis as a gateway to getting support and the difficulty of receiving a diagnosis.
- The importance of increasing a general understanding of what Tics are.
- The impact of labelling and the language used and the surrounding discourse.
- The two main strands of treatment – the medication strand and the Behavioural Therapy strand – and the challenges of accessing treatment.
- Importance of collaboration between patient community, the associations and health professionals and how to get more patients involved in research.
- Overview of some current research projects, including the INTEND project and the ORBIT-UK study.
- The need for NICE guidelines on Tic Disorders to improve diagnosis, treatment, and management, and the impact of the lack of NICE guidelines on equity of services.
This episode is part of The Association for Child and Adolescent Mental Health’s series on Tourette Syndrome and Tic Disorders. The series explores the evidence-based research on Tourette Syndrome, and other Tic Disorders, as well as the education, treatments, and research in this area.
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Dr. Charlotte Hall is a Principal Research Fellow working within the NIHR MindTech-MedTech Cooperative and Biomedical Research Centre at the University of Nottingham. Charlotte has a keen interest in exploring how digital interventions can be used to improve the assessment and treatment of mental health disorders in children and young people, with a particular focus on neurodevelopmental disorders, including tic disorders. Charlotte managed the NIHR HRA ORBIT-Trial, a large randomised controlled trial evaluating online therapy for tic disorders. She is co-leading the NIHR i4i PDA award with Prof Chris Hollis, to implement the findings of ORBIT within the NHS. Charlotte is also co-investigator on the INTEND study, led by Dr Maddie Groom, which aims to develop a service model for tic disorders in England and is exploring how to improve GPs knowledge and confidence in tic disorders.
Dr. Tammy Hedderly is an acute paediatric neurologist with an interest in children’s onset movement disorders. She provides sub speciality neurology input for Wilson’s Disease, and complex communication disorders and also has an interest in children’s intensive care neurology. She has experience in providing xeroderma support. Dr. Hedderly established and leads the TANDeM service. This is now an established multi-disciplinary clinic within the paediatric neurosciences team with input from child and adolescent psychiatrist, specialist clinical psychologists and a liaison nurse specialist. This service offers assessment and management for tics and tourette’s and complex developmental difficulties. This includes psychological as well as pharmacological management.
Dr. Hedderly has a longstanding interest in teaching and training and has contributed to PASTTEST course material – written and clinical – and has been involved in MRCPCH exam organisation as well as development and delivery of examination courses. She is an honorary senior lecturer at King’s College London and Guy’s and St Thomas’ and is active in research projects for tourette’s and genetics. She is the UK project investigator on current EU FP7 EMTICS and NIMH grants. Bio via Evelina Children’s Hospital
Joe Kilgariff works as an Trainee Advanced Clinical Practitioner in Neuro-Developmental psychiatry for Nottinghamshire Healthcare NHS trust. His post includes a number of roles involved in the assessment, diagnosis and treatment of Neurodevelopmental conditions including Tourette Syndrome and comorbidities. As a behavioural therapist and independent Non-Medical Prescriber Joe specialises in providing both psychological and pharmacological treatments to ensures a holistic approach to children’s Mental health conditions. Joe has been in his current post working alongside Professor Kapil Sayal in the CAMHS ADHD Specialist team and Professor Chris Hollis in the CAMHS developmental neuropsychiatry tic disorder service for 14 years. Previous posts include a 5 year placement in a challenging behaviour Children’s day service and 3 years as a health care assistant on inpatient adult and child mental health, intellectual disability and forensic wards. Joe has a keen interest in Research and is currently part of the INTEND, ORBIT and SATURN trials as well as regularly delivering teaching and training sessions for CAMHS and Paediatric services across the country as well as lecturing for the universities of Nottingham, Coventry and Birmingham.
Lisa Rudge is the Director of Parent Services for ADHD Foundation Neurodiversity Charity and also their Tics / Tourette’s Syndrome Support Lead, and has worked at the charity, supporting families, for over seven years. In addition to working with tics in a professional capacity, Lisa also has lived experience of tics and TS in her family.
Seonaid is a chartered research psychologist and freelance neurodiversity consultant with many years experience in neurodevelopmental disorders. She provides support to research professionals at every stage of the research process and to healthcare experts in their clinical work, for individuals, universities as well as the public sector. She provides specialist advice and guidance on the treatment and management of a range of neurodevelopmental conditions such as autism spectrum disorders (ASD), attention hyperactivity disorder (ADHD), Tourette Syndrome, dyslexia, and mental health. She is on Twitter @Seonaidanderso2 and can be found on LinkedIn.
Other episodes
- Episode One ‘Teens, Tics, and Tech’ – Camilla Babbage ‘In Conversation Tourettes Syndrome’
- Episode Two ‘Education, and Educating, about Tourettes’ – Lucy Toghill ‘In Conversation Tourettes Syndrome’
- Episode Three ‘‘Tics, and Tic Disorders; the sudden onsets and influences of the pandemic’ – In conversation with Dr. Tammy Hedderly’
- Episode Four ‘Cultural Differences in Tics and Tic Disorders’
- Episode Five ‘Tic Disorders and Tourette Syndrome: Exploring the INTEND Project’
- Episode Six ‘ADHD and Tic Disorders: Discussing the SATURN Trial’
Other resources
- ACAMH Topic Guide – Tourette Syndrome
- ORBIT-UK
- ImproviNg Tic Services in EnglaND (INTEND) study
- Tic-Talk: Voices on Tourette Labelling
- The ADHD Foundation Neurodiversity Charity
- Tourettes Action
- Tics and Tourette Across the Globe
- European Society for the Study of Tourette Syndrome
Transcript
[00:00:01.040] Dr. Seonaid Anderson: I’m really excited to be here today, as this is part of a series of podcasts that ACAMH has been hosting on Tourette syndrome. Now, over the course of the series, we’ve been looking at the evidence-based research about Tourette syndrome and other tic disorders, as well as education, treatments and research into this area. And today, I’m honoured to be speaking with a group of people with a strong interest in tics and tic disorders, like Tourette syndrome. And I’ll ask each of them to introduce themselves, where they work, what kind of work they do, if it’s clinical or research, and whether they work with children and young people or adults, or both. So, Joe, if you could introduce yourself to the audience, please.
[00:01:04.462] Joseph Kilgariff: Hi, and thank you very much for asking me to come and speak today. It’s a really important chance to be able to talk about a very misunderstood condition. My name’s Joe Kilgariff. For the last 14 years, I’ve been working with Professor Chris Hollis in a Nottinghamshire tic disorder specialist clinic, as part of CAMHS, Child and Adolescent Mental Health Services. I have a – my role would be Advanced Clinical Practitioner, which means I have both a clinical and a research approach with Tourette’s, mostly clinical. I’m 80% clinical and a little bit of research, but I get to work on some wonderful projects with lots of colleagues, who are here today. And so, I do a mixture of the assessment and diagnosis and treatment of tic disorders, from both a medication and a behavioural therapy perspective. It’s a really privileged job to be able to do all aspects of tic management.
[00:01:58.203] Dr. Seonaid Anderson: Thanks so much, Joe, and I’m going to go to Charlotte and ask if you will introduce yourself, please.
[00:02:07.460] Dr. Charlotte Hall: Thank you, Seonaid. Yeah, really great to be here today and to join this fantastic group of people and experts in the field. So, I am Dr. Charlotte Hall. I’m a Principal Research Fellow. I also work at Nottingham. So, I’m part of the University of Nottingham and I come today very much with a research hat on. I work within the Mindtech structure. So, my role of what I tend to do is to look at how we can use digital technologies to improve the way we assess and treat young people with disorders. So, when it comes to tics, my focus is on how we can use technology to improve access to evidence-based treatment. I work really closely with Joe, as well as many people here, as well, today. So, thanks very much for having me.
[00:02:48.767] Dr. Seonaid Anderson: Thanks, Charlotte, and now, if I can ask Lisa.
[00:02:56.878] Lisa Rudge: [Pause] Hi.
[00:02:58.263] Dr. Seonaid Anderson: Oh, there’s some…
[00:02:59.788] Lisa Rudge: Hi, sorry.
[00:03:00.288] Dr. Seonaid Anderson: There’s some feedback.
[00:03:00.788] Lisa Rudge: Hi, Seonaid, hi, everybody else. Thank you so much for inviting me along to speak with you today. My name’s Lisa Rudge. I work at the ADHD Foundation Neurodiversity Charity. We support neurodivergence right across the UK. And my role there is – my job title is Director of Parent Services, so I work in lots of – on different projects with lots of parents and carers of children and young people with neurodivergence in general, but I’ve got a special interest in tic disorders and tics and Tourette’s. I lead our service user voice for tics and Tourette’s. We have support groups. So, I’m hearing from lots of sectors of our community of things that they’re finding difficult to access, or difficult to understand, or trying to find support. So, I’m coming here very much with that service user voice today. Thank you.
[00:04:08.291] Dr. Seonaid Anderson: That’s wonderful, Lisa. Thanks for joining us, and finally, Tammy, if you could introduce yourself, please.
[00:04:16.640] Dr. Tammy Hedderly: Hello, everyone, my name’s Dr. Tammy Hedderly. I’m a Paediatric Neurologist in London. I work at the Evelina London Children’s Hospital, and I also work at King’s, and I look after children with tic disorders and movement disorders, generally. It’s a movement disorder clinic, but I’ve got an interest in psychology and psychiatry. So, we run a multidisciplinary clinic with some professionals in those fields, which is a really nice place to work, with nursing support and – thank you for the invite today. It’s lovely to see everybody. I think we’ve all worked quite closely over the years, and although we’re full-time Clinicians, we do have an interest in the clinical aspects of research, as well, and we tend to have a, you know, insight into the clinical aspects. So, we tend to write up research focused on those aspects, really. So, nice to see everybody.
[00:05:18.026] Dr. Seonaid Anderson: Thank you so much, everybody. What a fantastic panel of people to get together, and such experience to have in one place for this discussion. Myself, I’ve worked in this field for about ten years, but I think everyone else on the panel has been working in this area for much longer. But I feel it’s really timely to have a discussion about tics and tic disorders and the current situation in the UK. There seems to be a, kind of, building of momentum in the last year or so, I feel, anyway, which is exciting. And by that, I mean there seems to be more discussion about tics and more recognition, for example, that they’re not, in fact, rare, as was once thought. And there seems to have been more research papers published and more funding sought, and also, sort of, spurred on by more patient involvement recently.
Again, these are just my feelings, so it would be great to hear from you, but it feels like people with tics and Tourette syndrome are being more active and more vocal in terms of their concerns and needs, in terms of what it’s like living with tics and tic disorders. And so, for anyone listening that wants to find out more about tics and tic disorders, I would refer you to the topic guide on the ACAMH website, but I’d like to talk about all the different activities, with this group, that have been occurring in the UK which have been lending themselves to this build-up of momentum and awareness raising. So, hopefully, we can talk about some of those issues already mentioned, so the accessing services, but also, how we can support people with their mental health, and the changes that we may feel that would benefit people and serve this patient population better, as well.
So, let’s start our discussion, but, basically, my, sort of, start off question to get our braincells going, would be really to have your input about why you think it’s such a misunderstood condition and whether that’s still the case today. Although we’ve all been, in our different workplaces, trying to educate people about what Tourette syndrome is, why do you think it still seems to be so misunderstood? Do you think that’s accurate? And I put that question – anyone can answer, but I’m looking at Joe at the moment and wondering what you might say to that in response, Joe.
[00:08:05.856] Joseph Kilgariff: Absolutely, and I think it is still a generally misunderstood condition by anyone that doesn’t have it, or any family members that don’t have tics. And I think it’s unclear as to where that comes from, still. I think we are getting better at recognising things in health sciences and in medicine generally, and I don’t know if, in general, neurodiverse conditions are more common than they were maybe 50 years ago, or we’re much better at seeing them. But I think the general awareness of neurodiversity has improved over the last decade, particularly, and in the last five years with that. So, we’re getting better at recognising more subtle traits of autism and ADHD. And as these are the population of people that have tics, as well, because it’s a very comorbid disorder, huge amounts of people will have Tourette’s or tic disorders and ADHD and autism, it’s now becoming more part of that mainstream conversation.
I think one of the things that most people don’t know about, as you talked about in your introduction, Seonaid, is that tics are not rare, but most tics are very mild. And so, when we start to notice tics and become more aware of them, it can be traditionally and historically at that more severe end, and then, that’s what’s been placed in the media, that’s what’s people’s understanding around this is Tourette’s. It’s very severe tics, it’s swearing, and it’s all of these other myths about, kind of, what Tourette syndrome is.
For a lot of people, you know, a subtle, mild eye blink or a sniff, or a twitch of the neck or head isn’t going to be noticeable to that point to a problem to a lot of people, and it can be very subtle and nuanced condition. And I think that’s why your day-to-day tics have been missed by a lot of people going forward, because tics are incredibly common and many, many, many people have them, and so, they don’t associate that with a syndrome of impairment.
And I think the other aspect, before I stop talking, but the other aspect of that is that I think people naturally, with tics, are quite self-conscious, don’t want to bring attention to themselves, so don’t, naturally, talk about it as openly and as easily as they might if they have conditions such as ADHD, where, say, impulsivity is a bit more of a factor. So, it’s much more – a bit more out there and open and people find it easy to talk to. That self-consciousness and that level of worry about people seeing you, I think naturally, you tend to hide that, which then, it isn’t spoken about as much, and that carries on, I think, in our day-to-day practice with health professionals.
[00:10:47.067] Dr. Seonaid Anderson: And Tam, tell me – I’m thinking, also – thanks, Joe, for that. Tammy, I’m going to turn to you and talk about the prevalence, as well, that Joe mentioned there, so, actually, tics and tic disorders being much more common than we might think. That – and there might be, also, health professionals listening just now who think, well, I don’t really see anybody with tics in my service. But actually, do we have a feeling that if you’re seeing people with ADHD and OCD and other neurodevelopmental conditions, that probably a high majority will also have tics, as well?
[00:11:29.240] Dr. Tammy Hedderly: Well, firstly, I’d just like to say I agree with everything Joe has just said. I mean, I think one of the challenges, that isn’t a direct answer to the question, but is a very important point, I think, is that in the UK, we have services that are, kind of, siloed. So, we have the ADHD service, we have an autism diagnostic service, we have Tourette clinics. And in a little bit dependent, the label that you get acquired when you present, I think wrongly, probably depends on the clinic that you present to, as opposed to the problems in that young person or adult’s life. And I think if we took an approach that was a little bit more, “Well, what’s the problem that you have?” or “What is the area of difficulty?” this might be a much more productive and helpful approach.
Now, the difficulty we also have is that people need labels, and it’s very interesting, isn’t it, about which label is felt to be the most important? And I think we don’t understand this enough, and one of my pet, kind of, difficulties, when people walk into my clinic, is when they say, “This is Jimmy,” or “Bobby,” or “Sarah, and these are the labels that they have.” And you start to hear “Dyspraxia, depression, dyslexia, inattentiveness, ADHD, OCD, Tourette syndrome,” and you think, “Oh, hold on a minute,” you know, “what is the problem in this person’s life? Can we take that as the starting point?”
So, I think that the prevalence is har – I mean, we traditionally use the percentage of around 1% of having Tourette’s, but if you start to widen the umbrella and look – kind of, look under the umbrella of all the different overlapping conditions that you’ve alluded to, you know, the ADHD, autism spectrum, OCD, then you can often find tics within the children who present in these different services. And what we probably need is to be, if we’re allowed, you know, by society, which we’re not at the moment, really, ‘cause people need labels, but that’s my issue, if we could get the support and the help without the list of – long list of labels that don’t tell you anything, and focus on the areas that need solutions, the problems that present, I think we’d be in a better place.
[00:14:09.356] Dr. Seonaid Anderson: Thank you, Tammy. That’s really thought provoking, what you were talking about there, and I guess it makes me think about the DSM-5, of course, the classification that, you know, healthcare professionals are using to classify these different kinds of disorders, I guess. And it makes you think that yes, there must be lots of people out there with say, simple eye blinking tics or throat clearing tics, and they’ve lived their whole life without a diagnosis. They don’t need – you know, maybe they have a supportive family around, or they have the disposition that, “Well, that’s one of my habits, as people sometimes call them, “I’m just going to get on in life and that’s” – you know, “I know that it happens more at that point I get stressed and that’s just something about me,” and they accept it.
Not everybody perhaps needs a diagnosis. Not every tic needs to be described. But I guess if clinical healthcare professionals are seeing tics as part of something else, even just the acknowledgement of, you know, “Oh, I see that you have a movement,” or “You’re making a sound,” etc., that might even be the first time that they have had that acknowledged by somebody and that, in itself, might be helpful.
I think that I want to come to Lisa next, as well. Sort of, from a parent/carer/patient perspective, I mean, are we thinking about diagnosis – I mean, it almost feels sometimes like for younger people and children, that getting a diagnosis is a, sort of, gateway to getting some support, really.
[00:15:58.320] Lisa Rudge: Yeah.
[00:15:59.206] Dr. Seonaid Anderson: What are your views on what’s been said so far?
[00:16:03.563] Lisa Rudge: Absolutely, and as Tammy was speaking, that was the very thing that was going through my mind, that actually, these labels, these diagnoses, are often those gateways, those access doorways to support in school or employment. So, we’re in that Catch 22, aren’t we, you know, we don’t want lots of labels? However, without the labels, we can’t get the help. So, I suppose, really, thinking about what purpose that label will meet. You know, are we given a label for a label’s sake? Are we given a diagnosis for a label’s sake, or are we doing it for another reason?
Unfortunately, in my experience, as a parent of a child with a tic disorder, and in my professional life, I’m finding that schools, colleges, you know, even now, employment, are very closed to the idea of offering support without that diagnostic label. So, you know, that’s what I’m hearing. That the patient voice that I’m hearing is, “We need this to be able to get an EHCP,” or “to be able to get the reasonable adjustments in school, or for school to actually listen and understand.”
And going back to when Joe was talking before about, you know, perhaps the issues that we face, I think that one of the issues is the variability of tics and tic disorders. So, okay, you know, Tammy, that young man yesterday might’ve been presenting with, new eye blinks that may or may not have been impacting on him in the time. However, because we know the condition waxes and wanes, if we don’t identify it when we see the smaller tics, if, for example, there’s a larger presentation six months down the road, well, then, what do we do then? Do we have to start the whole process of referrals again?
So, that’s what I’m hearing. I’m hearing that families are going to their GP, or going to their Paediatrician, with symptoms and with traits and either that, “Okay, we’ll watch and we’ll wait,” or “We’ll not do anything now because they’re only small tics.” However, then, it’s another referral and another referral and, you know, I hear it named as ‘gatekeeping’ all the times from the families that I’m supporting. You know, “We can’t get past that gate. We can’t get on,” or “We’ve seen somebody who’s said, “Don’t worry about it, they’ll grow out of it.” But actually, two years on, the tics are so pronounced that they’re having a serious impact.”
So, you know, they’re the thoughts that have been going through my mind, well, while we’ve been talking already. I don’t know whether – I’m seeing lots of nods onscreen and, you know, so I’m assuming that you’re hearing similar.
[00:19:02.073] Dr. Seonaid Anderson: Yes, Joe – thanks so much, Lisa, for that. We’ll go to Joe.
[00:19:06.863] Joseph Kilgariff: I think one of the frustrations for us, as professionals that are working in those siloed areas, is we don’t particularly want to, but to be able to get access to the patients, to be able – for them to be able to come to a clinic, you come to a tics clinic, half the time, as Tammy says, we’re helping with school liaison, we’re helping with friendships, we’re helping with communication, we’re helping with concentration. All the things that go alongside the tics, as well as the tics themselves. And our frustrations, as healthcare professionals, are that our clinics are based in those silos. They’re funded on that silo idea. We’d all very much like to be holistic and like to be able to approach things in a holistic way, but I think you’re right that the education system, the social care system and the health system, we work on these areas where we need these labels to identify that’s the area that we’re working in. That’s the services for those people.
And I think there’s a frustration that builds up for particularly a lot of us that are involved in both therapeutic and medication, or assessment or diagnosis, or when we do all things. We’re able to do those things in these specialist clinics, but you have to be able to have the tic to get in there. And we’re a very frustrating part of medical development, I think, in that way. There’s certainly a movement, even with medications, to label them as ‘different’. So, we tend to label things now, rather than saying, “I’m using an antidepressant for obsessive compulsive disorder,” “I’m using a serotonergic medication for obsessions.” We’re moving a lot away from some of that terminology, to try and be more holistic, but services are a long way away funding and commissioning where we’d like them to be, I think, to be fair.
[00:20:52.581] Dr. Seonaid Anderson: Charlotte – thank you, Joe. Tha – and we’ll go to Charlotte now.
[00:20:57.317] Dr. Charlotte Hall: Yeah, thank you. Just to add on the back of what Joe and Lisa have said, and I think it’s really worth reminding our listeners, actually, that we’re so lucky today that we’ve been joined by two of the UK leading tic experts, clinically, and in terms of Joe and Tammy. But what we hear from other people that perhaps don’t have access to tic experts is just how incredibly difficult it is to get that diagnosis in the first place. So, a referral to these tic specialists, if you’re lucky enough to fall in the catchment area of one of them, it often involves your GP noticing, and not only noticing and acknowledging that you have a tic, but then, knowing what to do after that.
And we’ve done some research recently where we did a survey of people that had experience going to a GP with a tic disorder, either themselves or for their child. And we heard some really interesting accounts of GPs that were really willing to go that extra mile, that might not have the training, and we know GPs don’t tend to have specialist training in this, but they were willing to do a Google, do some of their own research, find out what they needed to do, and that was fantastic. And that was considered the best possible service the families could get.
Not knowing to a GP that already knew. That was considered almost impossible. We never heard of that, but we heard GPs that went out of their way, but we also heard of GPs that perhaps didn’t understand the disorder and weren’t willing or able to do anything to perhaps support the families. So, families that would go year-upon-year, constantly, to their GP to try and get that referral, that were saying, “This is what tic disorders are. This is what we could perhaps have access to,” and having to really inform the GP of what needed to happen. And I just think that’s really interesting and telling.
[00:22:36.977] Dr. Seonaid Anderson: Thank you so much, Charlotte. I’m going to go to Tammy, and just also thinking that I wonder if it’s as simple as people knowing what a tic is. So, I’m talking about the healthcare professionals here, as well. I know that we’ve all done some training and sessions where we’ve spoken about what tics are, and when you actually describe that, you can see lots of people nodding in the room, going, “Oh, okay, it’s the throat clearing, it’s the sniffing, it’s the” – you know, “It’s not an allergy, perhaps.” We’ve heard of patients being sent off – down to, sort of, Ear, Nose and Throat Departments, etc., and actually, if there was a general understanding of what tics are and how to recognise them, it might actually mean that there’s earlier recognition, which perhaps, would be beneficial. I’m going to go to Tammy now. Thanks.
[00:23:32.585] Dr. Tammy Hedderly: Well, really, just to support what Charlotte said. I mean, I think the piece of work that is really important, and we’ve done a little bit, as well, that is, kind of, training events and tal – like, educating the General Practitioners and the Primary Care Practitioners. And often, I find, it’s my experience that the parents and the children and the families know a lot more than the Doctors. And I still get letters every week from, you know, like, Senior Paediatricians saying, “Is there any chance, you know, you could see this family to think about whether they’ve got a diagnosis of tics?”
The letter then lists a whole load of motor and phonic tics and then, the summary is, “I don’t think it’s as severe as Tourette syndrome.” You know, and this happens most weeks from Paediatricians, not – you know, not just from GPs. So, we’ve got some fantastic GPs, actually, who have taken the lead in trying to deliver training amongst other GPs and Primary Care Practitioners. I think the parents and families are doing a fantastic job at taking literature to GPs and saying, “This is what I think it is.”
And it’s my own personal opinion that really, you don’t need a specialist service or anyone – I mean, I think the GP should be giving the diagnosis. It’s a simple diagnosis, because by definition, it’s “motor and phonic tics for more than a year.” So, the diag – I mean, I – every day in my clinics, that I perform clinics, which mos – you know, most weeks, two or three clinics, that parents come and say, “We need you to be the one, as a Paediatric Neurologist and a Tourette’s service, to give us a label and a diagnosis.” And I think, well, you’ve waited a year or more to see me. You know, why has it taken so long for this label to be applied?
And I think this is one of the major problems we have, why people feel they’re not experienced enough to give the diagnosis. When actually, we’ve got lots of other diagnoses, for example, you know, autism, which I’ve worked in an autim diagnos – autism diagnostic service for, you know, more than 15 years, and that – it can be quite complicated, because it’s such – many of the symptoms that present, you know, often are a spectrum of normality. And it’s that question of whether it’s causing a problem and things, that I started off with. So, that’s my own view. I think it’s a real challenge, because we’ve been talking about this for many, many years, and I don’t know what the stumbling block is.
[00:26:06.240] Dr. Seonaid Anderson: It makes me think – thanks so much, Tammy. It makes me think about, you know, perhaps we need to get some of those bodies involved, like the Royal College, for General Practitioners and the training in there somewhere, so that, you know, tics can be recognised and that healthcare professionals have the confidence to diagnose and know the treatments that are available, so that they can give information.
And just quickly to pause and mention, you know, the great organisations, Tourette’s Action and the ADHD Found – Neurodiversity Foundation, and the written material that’s produced. And also, on the ACAMH website, as well, lots of people have written really excellent information sheets, and that’s helpful, because the patients and their families can take these along to their healthcare professionals and as you say, kind of, almost educate them. They’ve done their – the groundwork in trying to find the information and take it to their healthcare professional. But it is terribly frustrating and upsetting when you hear of all these year-long, and longer, waits for people to get diagnosed for some treatment. I mean, that’s a tremendously long time in a young person’s life to wait a year with tics and other comorbidities, without having any resolution or getting any further.
Joe, I saw that you had your hand up.
[00:27:35.824] Joseph Kilgariff: Yeah, and just…
[00:27:36.791] Dr. Seonaid Anderson: And go ahead.
[00:27:39.591] Joseph Kilgariff: …to agree completely with Tammy, and of all the training that we do, we often are speaking to people who are interested in developing skills with tics, because they often work in an ADHD or an autism service. And our – the first thing we say is, “Of the three of those conditions, tic disorders and Tourette syndrome are the easiest and the most straightforward and clearest to diagnose. That do not require corroborative evidence from multiple places, do not require an ADOS or an ADI-R,” these, sort of, objective assessments that we go through. “This is a history of motor and vocal tics for longer than a year,” as Tammy says. “This is very straightforward and very clear.”
And I agree, I don’t know where that confusion comes from, from professionals, and I must have a referral a week, as well, that says, “This is not severe enough to call it Tourette syndrome, but he’s got really bad motor and vocal tics.” So, things like that, and it just makes no sense. So, I think we’re still in the infancy of people understanding that, and I think there’s a general level of fear around it. It’s that unknown bit, “It is rarer, so, I don’t want to say that it’s Tourette’s in case it – I’m wrong.” Whereas it’s not rare and it’s very straightforward. So, we’re at the beginnings of that journey trying to teach people how to recognise these disorders.
[00:28:58.040] Dr. Seonaid Anderson: Well, I’ll come – and thank you, Joe. I’ll – we’ll come on and talk maybe a little bit about treatment and some research, as well, in a moment, too. There seems to be a reticence, on the part of some healthcare professionals, then, to give a diagnosis of Tourette syndrome. Do you think that’s fair, as well? I mean, does it – is it such a weighty kind of diagnosis to give somebody that there’s reticence on their part?
[00:29:28.040] Joseph Kilgariff: The…
[00:29:29.534] Dr. Seonaid Anderson: Sorry, go ahead.
[00:29:30.929] Joseph Kilgariff: Who’s going to answer that one first?
[00:29:32.867] Dr. Seonaid Anderson: Sure, you go ahead, Lisa.
[00:29:35.561] Lisa Rudge: Yeah, thank you. I just wanted to, you know, going from what Joe said there about, you know, yes, it’s often as obvious as the nose on my face that, you know, that’s what we’re talking about. We’re talking about Tourette syndrome. We’ve got the history of motor tics and the vocal tics, it’s lasted for more than 12 months. There’s co-occurrence going on. They’ve got ADHD diagnosis. You know, it’s very, very obvious, sometimes, isn’t it?
I find, as well, you know, from what I’m hearing from the parents I support, that the stigma attached to Tourette’s is often what’s stopping some of our medical professionals calling it Tourette’s, and also, some of our families don’t give a Tourette’s diagnosis because that label will stick with them. So, it’s looking at, you know, how the diagnosis itself is perceived. You know, as Tammy and Joe have both said, you know, they’re getting letters from perhaps Primary Care Practitioners saying, “It’s not severe enough to call it Tourette’s, so we’re not going to call it Tourette’s.” If that’s the viewpoint given to families, “Oh, Tourette’s is some really big, you know, serious, big condition that is going to follow you around all your life,” no wonder people are scared of giving that diagnosis, and whether it’s, you know, the families are scared or the practitioners are scared.
So, I think there’s a little piece of work to be done to normalise the term ‘Tourette syndrome’. You know, just to use it for what it actually is, rather than just referring it – to it when we’re talking about those big, you know, big, really disruptive tics. And that’s not to take away from those people who do experience those high-level tics, but yes, it’s a diagnosis that’s appropriate for that full spectrum, you know. So, you know, I just wanted to add that bit in there.
[00:31:48.082] Dr. Seonaid Anderson: Thanks, Lisa, and go ahead, Joe, please.
[00:31:51.616] Joseph Kilgariff: I think you’re absolutely right. There is a fear and there is a stigma associated to the word. I think also, health professionals want to be able to diagnose something they can then treat. And if it’s unclear how to treat something, if it’s unclear how to provide, or your service doesn’t provide that because it isn’t funded to deal with that condition, then what you – what they tend to not do is say, “Well, I’ll give you the diagnosis of Tourette’s but then, discharge you with that. We’ll describe them as tics.” And so, there’s a language in tic disorders, particularly, where we’ll talk and “We’ll say they’re tics, we’ll say they’re chronic tics, we’ll give you the diagnosis of chronic tic disorder. We won’t use that term because we haven’t got a Tourette’s psychoeducation group,” or “we don’t have any expertise in the medications or the behavioural treatments, so we’re a bit – we don’t want to, kind of, bring in that service.”
So, I think the access to treatment and services in general compounds that issue. Particularly, as well, if you don’t specialise in it, you don’t know that it’s – can be mild. You don’t know there’s such a thing as mild Tourette syndrome because of the word ‘syndrome’ as well. It entices you to think that it’s a very severe, impairing condition. So, I think it – they fuel each other.
[00:33:04.638] Dr. Seonaid Anderson: Right, thank you, Joe. That’s making me feel like hearing from Tammy, because I know you’d been doing some research recently about labelling, and maybe you could talk to us a little bit about that and also, talk to us about the treatments that are available. So, yeah, I agree, Joe, that as well as not being able to recognise tics, there may be lots of healthcare professionals that aren’t aware of the different kinds of treatments either. And there’s some new and emerging ones, as well, that Charlotte can talk to us about in a minute, but Tammy, yes, what about labelling and the…?
[00:33:44.580] Dr. Tammy Hedderly: Yeah.
[00:33:45.080] Dr. Seonaid Anderson: Yes.
[00:33:45.080] Dr. Tammy Hedderly: I mean, thank you. It stems – my interest in labelling probably stems way back to my time doing a psychology degree, where one of my dissertations was doing a critique of the DSM and psychiatric classification of disease. And I’ve always had a, you know, quite an interest, as I’ve probably alluded to already, in how language and discourse affects things. And it – we, probably wrongly, I suspect, use the term ‘Tourette’s spectrum’ a lot, but actually, it’s probably my own bias. And that was the reason for putting out the survey recently, and thank you for the plug, ‘cause I’m really keen to hear everybody’s views, but this is not a project that seems to – it seems to have picked up momentum as some weird project of renaming Tourette’s, which isn’t what we planned out to do. The project is purely to understand perspectives on current labelling.
So, what we did was we as – we’re asking professionals, carers, ‘cause I deal with children, so parents and carers, and the people themselves with tic disorders, of course, the adults with tic disorders, to know what label – a simple question, one question, “What label do you like, you know, now? We’re not talking about the future. We’re not talking about the past. I’m just interested in what you like it to be called.”
That’s the question, and I’m not going to give you the results because we’re going to discuss those at the European Society. We’ve got – we’ve allocated a ten-minute slot for the medical student, Julia, who’s helping me with the project, to present the findings, which we don’t know the results yet, anyway, because the survey’s still open. Hopefully, if you haven’t filled it in, you’ll disseminate it once more because the conference is in June. So, we’re going to leave it open now. We’ve been requested to keep it open.
Three QR codes, scan them on your phone or, you know, on the – press the link on the email, and the question is, “What do you like? Do you like, you know, Tourette syndrome, Tourette’s spectrum, tic disorder?” And there’s a list of, “Please tick what you prefer,” and then, there’s an open ‘comment’ box to say whatever you like. Some of those comments probably aren’t repeatable at the moment, ‘cause it’s obviously been an outlet for someone to have a bit of a “Why are you trying to rename Tourette’s?” when we’re not. There’s the – I think somebody put on there, “You’ve got too much time on your hands,” which made me laugh ‘cause the comment was on some – a post on Facebook that I hadn’t seen ‘cause I hadn’t had time to go on Facebook.
But anyway, never mind, but that’s, yeah, that’s an interesting project, and you might say, “Well, what’s the point?” And I think the point comes back to there’s a little bit of momentum in the field to lots of ‘Touretologists’, as we like to call ourselves, probably, are talking about whether some of terms like ‘syndrome’ are outdated. I don’t think anyone’s questioned the word ‘Tourette’, but some people don’t like the word ‘syndrome’, ‘cause they see it as stigmatising and, you know, that was one of the other thoughts. And the o – it’s interesting, there’s a lot of positive reports of people loving the term ‘syndrome’. So, it’s fascinating and I think we need to have the debate and we need to know what people are saying. That’s the reason for the survey.
[00:37:13.728] Dr. Seonaid Anderson: And I think that also – thank you, Tammy. I think that also points to what a, sort of, wide community this is, with a whole variation in terms of views of things and, you know, whether – I think it’s come from patients, that, you know, I remember a few years ago at one of the European conferences that you’re talking about, where patients who were attending the conference wanted to talk about the name Tourette syndrome and whether they liked it or not. But, you know, this is not about relabelling it. It sounds like you’re much more trying to take the temperature, as it were, of – and find out the opinions of people as to what they would like it to be called. Not that you’re wielding power and about to rename it, Tammy.
[00:38:02.663] Dr. Tammy Hedderly: I don’t think I’ve got that sort of power, but the – you’re – what you’re referring to is the 2019 meeting of the European Society, where we had a debate, and I don’t know whose idea that was. It wasn’t mine at the time, but it was an interesting debate where we – the title of the debate was, “Is it time to rename Tourette syndrome?” And it was a “yes/no” response. We had the, you know, SurveyMonkey, or whatever, on our phones, I think, at the time, and there was probably about a couple of hundred at that meeting, that you were at, as well. And the survey results showed – was just “Yes or No. Is it time to rename Tourette syndrome?” And “no” was something like 51% and “yes” was 49%, so the nos won out on that survey, which is published on the European Society website somewhere, from the 2019 meeting.
But in – well, you’ll remember, I don’t think we had very many members in that audience at the time, four – five years ago, nearly, who had Tourette’s, and that was another, kind of, in – and that probably spurred the thought in my mind that this is not a representative sample and we should repeat this at some point. It’s taken me five years to get round to, but I think you’ll – that was the point at which we started discussing it, whether we needed a wider survey. It’s embarrassing, time flies, doesn’t it? How did that happen, five years to get round to it? But that was the – where the idea came from for this rena – you know, not renaming, the perspectives of the name, as opposed to renaming.
[00:39:38.244] Dr. Seonaid Anderson: Okay, and so, yes, that’s the European Society for the Study of Tourette Syndrome, or ESST’s Conference, which is held in June every year, and that coincides with Tourette Syndrome Awareness Day, which is on the 7th of June, as well. So, whatever – it’s called Tourette syndrome at the moment, so we’ll leave that subject. It’s – we’re not talking about renaming of it, but we like people to be involved in research. We like them to give their views about their lived experiences of having tics and Tourette syndrome, as well.
Now, if we talk a little bit about treatments and what’s available currently, there seems to be two strands, where once a diagnosis is made, then somebody may or may not be offered treatment, but there’s the medication strand and there’s the behavioural therapy strand. Am I oversimplifying that picture and would one of you, sort of, talk us through what’s available, so that the healthcare professionals that are listening can pick up a bit of information about that? Joe, would you like to give that a go?
[00:40:50.384] Joseph Kilgariff: Yeah, no, absolutely. I think it’s not oversimplifying it, and there are two main strands of treatment. I think within that, there are lots of things that are part of behavioural therapy which aren’t necessarily always described as behavioural therapy. So, I’ll – but I’ll start with the medications ‘cause it’s easier. There’s a few medications that can help to reduce tics, from both a severity and a frequency perspective, for a lot of young people. So, the severity I talk about the strength of the urge to tic, that feeling that happens inside the body before a tic happens, which is very unpleasant, and a build-up of pressure. And there are medications which can relieve some of the pressure, or some of the strength of that, and so, sometimes it doesn’t always affect the frequency of tics. You may have as many, but they might not feel as big. So, that might relieve pain, it might relieve some of the repetitive strain of tics, sometimes.
But just generally, for people that are impaired in their daily life, there are medications that reduce things, and they work by either slowing down the firing rate of the brain, such as medications like clonidine and guanfacine, that just reduce the speed of firing. And then, there are medications which block the chemicals which we think are related to tics, and they’re more of the antipsychotic medications. All of these medications have side effects. All of these can be quite unpleasant. They’re generally the same side effects. They can be over-sedating. They can increase weight gain. They can make people feel tired, lethargic and demotivated, as well as affecting blood pressure and pulse.
They can be very effective medications. So, it’s very useful to have as part of your armoury, and for a lot of young people that struggle to access behavioural therapy, or don’t like challenging the medication from controlling their body perspective, they can be very, very helpful. So, it’s an important thing to know that there are medications available which are evidence-based and have been used for many, many, many years to help relieve tics. And they can be part of a wider package.
The behavioural therapy techniques, for me, tend to use your body or your environment to try and relieve or contain the tics. So, I would see psychoeducation as a massive part of behavioural therapy, teaching people about the brain, how it works, what Tourette’s is, what tics are, how they feel for people, what makes them worse, what makes them better. With all of those things, that’s probably the most important part, I think, of what I would say my job is, and teaching those young people those aspects about tic management. And then, from that, we can then go into, “Well, if this is how the brain works and this is which bits make tics, well, if you do this, it helps with that.” And so, we can bring in things like relaxation strategies, distraction strategies, breathing exercises, use of a fiddle item, use of timeout cards, those kind of things to help, sort of, compound the neurology and the biology of it.
I think the last layer of that, the cherry on the icing on the cake, so to speak, are very evidence-based and specific techniques, such as habit reversal therapy or exposure and response prevention, which are quite specific techniques about how to physically stop the tic coming out and then, how to cope with that feeling. Because the urge that drives the tic continues and that’s quite unpleasant. And for any professionals or anyone that’s not aware of how that feels for young people with tics, the way we get parents and young people to understand it is if they hold their eyes open and stop themselves from blinking. After about ten seconds, the back of their eye will tell them exactly what the eye wants to do. There’ll be a build-up of pressure. It’s quite unpleasant, and that’s generally how tics feel. There was an unpleasant urge in the body driving a movement, that then, is released by the person. So, the tic itself is quite physically relieving, but then, it has a social element to it.
So, that’s what I mean by treatment, understanding all of those elements and trying to figure out what would help that individual person. In an ideal world, we’d use all of them or the bits that are needed. So, not one thing on its own through access.
[00:45:06.661] Dr. Seonaid Anderson: Thanks, Joe, that’s great. It sounds very much like it depends on the individual, and definitely, there isn’t one medication or one treatment that will stop all tics, and that it really depends person-by-person.
[00:45:23.600] Joseph Kilgariff: Absolutely, absolutely. It could be simply just writing a school letter for some people, so Teachers don’t tell people off for ticcing. For other people, they may need a course of medication, they may need access to behavioural therapy and many sessions. It’s very much a – and I like the term ‘spectrum’ because of that, because there’s a spectrum of severity and impairment and resources, if you can get access to professionals that have an awareness of them.
[00:45:53.111] Dr. Seonaid Anderson: And that sentence, of course, can lead us onto this massive difficulty that seems to be happening in the UK, maybe it’s always been there, but the great difficulty in accessing diagnosis and treatment, as well, and I think Lisa, I’m sure you’ve heard from many families where that is incredibly difficult. But although we’re saying there’s medication and behavioural therapy available, actually finding somebody who has that training and experience can be a huge challenge.
[00:46:23.972] Lisa Rudge: Yeah, absolutely, absolutely. Yeah, and like we’ve already spoken about, you know, in this session, that initial, you know, going to the GP, for example, “What’s available?” They don’t know what’s available. You know, I think some of the terminology that professionals use can also be quite confusing for families. You know, you just take the habit reversal therapy as an example. What I’m hearing is families going, “It’s not a habit. They” – you know, “It’s not like biting their nails or picking their nose, you know. It’s not a habit. They can’t help it,” and I’m finding that frustration.
So, even just a little bit of awareness about what – you know, if professionals are saying, well, ‘habit reversal’ or, you know, ‘exposure response’, little bit of understanding of what that actually means. Because I’m finding, you know, from conversations I’m hearing, that families are getting quite, you know, quite confused or upset with, you know, what’s being suggested. Whereas from our medical professionals’ point of view, they’re absolutely right in suggesting those things, but there’s that, you know, communication element. You know, it’s lost in communication of what that actually means.
Likewise, when we’re talking about medication. You know, if – you know, Joe’s just described some of the medications that may be appropriate for tics and where we’re saying ‘antipsychotics’, that scares the absolute life out of some. You know, I talk to parents and carers, as well as individuals, you know, adult individuals with tics and Tourette syndrome, and the terminology our Clinicians use is often that barrier and will prevent people going, you know, to their medical professionals. Going even to, you know, the fundamental, you know, basics, you know, when we talk about ‘comorbidity’ rather than ‘co-occurrence’, we’re using frightening language, you know.
So, I – you know, in my view, having some sort of shared language that’s very, you know, very transparent to what we actually mean, could be very helpful in allowing our communities to access, you know, our health professionals and our health professionals to be able to, you know, understand what our families are communicating and then communicate back in a non-frightening, non-threatening way, to explain what we can do, what the condition is.
You know, we’ve spoken about the differences of language, where we were talking about the condition names, Tourette syndrome and the ‘syndrome’ bit might make people – so, you know, let’s have a look how – I’m not talking about renaming things, but just let’s be very transparent when we’re explaining what these things actually mean.
[00:49:37.269] Dr. Seonaid Anderson: Thank you, Lisa. I think that also, maybe, points to some work that can be done between patient community and the associations and health professionals, as well, and some joint working together, Lisa, yeah?
[00:49:55.197] Lisa Rudge: Absolutely. So, you know, like Joe said, this psychoeducation part of it, let’s split it down to really basic terms that we can all understand. Give, you know, information freely and, you know, you’d said before, both on ADHD Foundation’s website, Tourette’s Action’s website, and lots of other websites, there’s lots of really accessible information in accessible language. You know, so, yes, let’s use that. So, that’s something that I try to do in part of my – like, the training that I deliver, you know, psycho-educative training that I deliver, you know, paring it right the way back into what this actually means in real speak, you know, real terms.
[00:50:42.082] Dr. Seonaid Anderson: Thank you very much, Lisa, thank you, and in terms of – I think what we’re going to play – so just so interesting, the difficulties accessing treatment, for example. We haven’t talked about NICE guidelines, but I think we’ll perhaps leave that to another time. But what’s going to make the biggest difference to patients? And it would be great to hear from Charlotte about some of the research. There’s been quite – I don’t know whether you would describe it as blossoming, but the in UK, there’s been a lot more – it seems like there’s been a lot more research in recent years. And actually, we’re very blessed to have, sort of, pockets of Researchers and Clinicians working together and, you know, being awarded some research funding, which, you know, also, kind of, begats more interest in the area.
But Charlotte, could you maybe give us a brief overview? I know there’s quite a lot going on at the University of Nottingham, for example, but also, we – you know, we know that Tammy’s doing research in London, as well, and there are other pockets, as well. But I know there’s a few research projects looking at some of the issues. Can you give us a, sort of, brief overview of what’s happening?
[00:51:55.180] Dr. Charlotte Hall: Yeah, absolutely. You know, you’re absolutely right, Seonaid. I think here at Nottingham, we’re really fortunate to have some fantastic collaborations, not only with Clinicians and other academics, for example, we have Tammy down in London, but also, with patients, as well. And they – really this, kind of, very cohesive and multidisciplinary approach that we take to our research, I think is what makes it so successful, not only in terms of our – how well we recruit to our studies, but also how we are able to then get that message out there.
Because I think there’s great research that goes on in perhaps smaller teams, but I think as Researchers, what often happens is that we’re funded to deliver a small project and then, when that funding ends, that team disappears, and then, the impact of that intervention, or that finding, might take a long while to make its way into the NHS. So, I think by working together and collaboratively and really getting our voice out there is how we can make sure we transition from research into practice. And as Researchers, I think we need to be really mindful that we’re not here just to do great research. We’re here to make a difference into practice and that’s really important, and we can only do that by our collaborations.
So, yeah, we’ve got some great research going on. I’m probably just going to focus on two projects, but there’s many more, and I won’t do justice to all the work that’s going on with other people, as well, and other members of our team. But one project we’re currently in the middle of conducting is called the INTEND Study, which is being led by Dr. Maddie Groom at the University of Nottingham.
Now, the purpose of INTEND is to look at the current provision of tic services. We’ve heard a lot today from our experts, as well as our patient voices, about how difficult it is to access diagnosis and treatment, but what, actually, we don’t really understand is what is this national provision? We know there’s great centres, for example, those led by Tammy and also Joe, and other experts, but where are they based? What else is going on? What’s going on that may not be, perhaps, at that expert level, but still offering some kind of support and guidance to patients?
And until we can really understand this, it’s really hard for us to know where we need to target. So, where – what do we need to improve? Where do we need to improve it? Where in the pathway are things falling to pieces? Now, I think we know that probably the answer is all of the pathway, but really to map this from start to finish is incredibly important. And the reason why that’s important, I know – I’m sure there’ll be patients, perhaps, that are listening to this, saying, “I could tell you this. I absolutely know this.” But we need to be able to evidence this so that we can have these conversations with Commissioners, with people like NICE, big decision-makers, say, “This is where we are letting people down. This is where we could be doing better.” But also, “This is the solution that we could be implementing,” as well.
So, we’re doing some research to try and map what the current provision is and also, to try and address this within the INTEND project. So, what would an ideal service pathway look like? And we’ll do – in order to answer that, we are speaking with patients, we’re speaking with Clinicians and we’re speaking with experts, as well, in the field. So, we’re halfway through that. I can’t share any findings with you yet, but I really hope to be able to in the future, and it’s certainly really interesting work that we’re doing.
And the other piece, which I think is really complementary to that, is to build on the findings of a really successful randomised controlled trial that we did called ORBIT. And ORBIT might be familiar, again, to some of the listeners, and I know, also, certainly the people around the table today, all of whom helped make ORBIT an absolute success. For those of you that aren’t aware of ORBIT, what ORBIT did was to take Exposure and Respense – Response Prevention Therapy, which Joe has already mentioned, so ERP, and to deliver it online via a web-based chapters. And the reason why we put this online was because unless you live close to one of these experts in tics, the chances that you get evidence-based therapy for your tics is incredibly slim. If we could offer this online, we could really broaden our ability to offer evidence-based care. We could breakdown geographical boundaries and also, offer convenience that people can access this around school, around work, at home. All the things that we know are incredibly important to patients.
So, we’ve already conducted a research trial, where we’ve looked at ORBIT, we compared it to what we call a control, something to check whether it actually made a difference or not, and we found that ERP, when delivered online, was really effective in helping young people to control their tics. So, it made the tics better, but it also improved their quality of life. And what we also found, we spoke to the patients that took part in our study and we found that they really liked it. So, they thought it was really accessible and they really enjoyed taking part in their therapy, as well as the research.
Now, often what happens, and what absolutely happened with ORBIT, is that we conduct a really successful trial, we found that it worked and then, we have a bigger hurdle to face. And that hurdle is how do we make this evidence-based therapy available for people within the NHS? And we’re at the very start of that next journey. So, we’ve recently been awarded some NIHR funding from the i4i stream and what we’re doing is now to start to look at how we can take ORBIT and offer it as a service within the NHS. And I get emails from parents on – still, even though ORBIT closed a few years ago, saying, “How can I access ORBIT?” And the sad answer to that question is, “Right now, you can’t access ORBIT. It is not available as an offer within the NHS.”
But what we hope to do, as part of our new research project, is to look at how we can do this. So, where in the service pathway should ORBIT fit? How is it going to be commissioned? Who – how are people going to get – access it? All these big questions that are really important when we’re starting to look at how we might develop a service within the NHS. Unfortunately, these things take time. I would love to say we would be able to make this available next month. That’s not the case. This is a couple of years down the line, unfortunately. But what we will be doing as part of this is working really proactively with patients. We absolutely need the patient voice to inform this decision, as well as Clinicians and other academic experts.
[00:58:09.676] Dr. Seonaid Anderson: Thank you so much, Charlotte. Gosh, there is so much happening and that’s wonderful, and it feels like those two projects you mentioned will have – you know, this will not take too long to, sort of, filter down to the frontline, as it were. These should have a real effect and make a difference to families – to patients and their families.
[00:58:33.955] Dr. Charlotte Hall: Absolutely, yeah, we really hope so, and we’re actively engaging with these key decision-makers as we go. So, for example, with INTEND, we’ve already had meetings with Commissioners in various parts of England to start to discuss, “How can these findings be implemented within your region?” We’ve also been having conversations with NICE.
One thing that we’ve not mentioned, actually, is the lack of NICE guidelines for tic disorders, and unfortunately, that there is no change on that in the horizon. But what we do know is that NICE have recently developed a call for guidance for digital therapy for tic disorders. So, that’s a really promising start to see how NICE are listening.
We know that they know that there needs to be a better offer for evidence-based therapy for young people, and their call that they’ve put out is specifically to look at the use of digital therapy and how that can be used to support people with tic disorders, both young people and adults, as well. The call is now open for adults. And one of the technologies that’s going to be implemented and that they’re going to review as part of that is ORBIT.
[00:59:45.942] Dr. Seonaid Anderson: Thank you so much for that, and it feels that, again, this groundswell of interest and movement, you know, perhaps we’re inching closer to perhaps getting NICE guidelines one day. And do we think that NICE – having NICE guidelines would be a big difference would make? You know, is that really a golden opportunity that would make this diagnosis and treatment and management so much easier? Tammy, would you have thoughts on that? And what about these NICE guidelines, which we should be aiming for that if we can?
[01:00:24.140] Dr. Tammy Hedderly: Yes, I think so, and I think traditionally, in NICE guidelines generally, they do help with business case development and, you know, proposing expansion and services. We’ve got issues with manpower and resource. You know, sometimes it’s a wider issue, isn’t it? It’s not – you can have – like, we wrote the European Guidelines a few years ago. You’ll know people’s feedback with these are very, very helpful, but actually, practicalities of delivering the guidelines, it takes time and it takes manpower, it takes resources. So, we always have those limitations, but I think it’s a good starting point.
Yes, I mean, I think we’re all working hard to understand the difficulties with provision, accessibility, and there is some discrepancy with who can access services on all sorts of fronts, and I think this is not a good place to be. You know, we need to reach out and try and provide support. ORBIT’s done a great job of that and hopefully, that will be one way of improving access.
[01:01:37.508] Dr. Seonaid Anderson: Hmmm.
[01:01:39.688] Dr. Tammy Hedderly: But we do have problems with equity of services, of course, within the UK, so yes, I think it will be a good thing.
[01:01:48.333] Dr. Seonaid Anderson: And I would imagine, also, for the healthcare professionals listening just now, for example, we’re talking about research, but the challenges of trying to do research in a clinical setting must be quite large. Would you have any advice for healthcare professionals that see people, or young people, with tics, for example? Can – do you have advice about how they might be able to manage to do some research or gather data in those clinical settings?
[01:02:18.661] Dr. Tammy Hedderly: Well, as Charlotte said, I think the – probably the secret is, you know, collaboration, and we’ve got a pretty good UK network, I think. We all, kind of – a lot of the professionals and the Physicians and the Clinicians know each other. We probably haven’t – we’ve got good contacts with, you know, yourselves and neurodiversity organisations, Tourette’s Action. We don’t – we try our best to have the patient voice in all our meetings and all our, kind of, collaborations. But yes, there’s always room for new people to come onboard and as you know, they’re really promoting people to join ESST.
I mean, the European Society for Study of Tourette’s has become not just European now. We have a lot of members from Canada and America, and we would hope to see as many UK members, and that’s open to Tourette Action organisations and TTAG and others. There’s patient organisations represented at all the European meetings. So that’s a good way to get involved, I think, in the research.
[01:03:23.192] Dr. Seonaid Anderson: Absolutely, and you mentioned TTAG there. So, that’s Tics and Tourette Around [means Across] the Globe. So, that’s a new organisation which represents patient associations around the world, and they are – they’ve set up in a master programme, etc., and they are present at the ESST Conference, which is great. And it’s great to have patient associations at an academic conference, as well, ‘cause that’s where you hear the most up-to-date research and collaborations can happen, etc.
And Lisa, I’d like to put to you, how can we get more patients involved in research, because that’s always a challenge, isn’t it, especially from, sort of, minority communities, as well? What would your thoughts be on that and how can we encourage people?
[01:04:12.298] Lisa Rudge: That’s a really tough one, isn’t it? You know, and it’s something that, you know, certainly, our organisation, ADHD Foundation, ask ourselves all the time, “How can we reach all sectors of our community?” You know, embracing newer technology is likely going to help. You know, as a tech dinosaur, like myself, I’m not really – you know, social media and TikToks and things like that, that’s way, way out of my comfort zone. However, there’s lots of sectors of our community who use, you know, YouTube or TikTok as their main sort of communication. Let’s perhaps – you know, in line with what I was talking about before, about destigmatising tics and Tourette’s, talking about it openly, without the stigma, without the professional language, will allow more people to be able to join that conversation.
So, let’s be having those conversations in our schools, in our GP surgeries, in our Surestarts, you know, our Early Years. Let’s have those conversations in all of those areas. Let’s have – you know, it’s – in the media, let’s have those media promotions. You know, certainly from my point of view, at ADHD Foundation, we have our Neurodiversity Umbrella Project. We have a big colourful installation. We’ve got it, you know, in lots of areas, right across the UK, in lots of schools, and just using that allows us to open up those conversations, where those conversations aren’t currently being had. You know, so let’s look imaginatively. Let’s, you know, talk about it openly.
That’s where – you know, certainly for ADHD Foundation, that’s what we’re trying to promote, so thinking about the reach. We’ve got 500 schools currently with that Umbrella Project installation, so that’s promoting us to say, “Okay, you know, we might be called ADHD Foundation, but all of the resources that go along with that promote neurodiversity as a whole, thinking about, you know, neurodiversity as being the most important thing we’ve got to consider. That we all think differently, we all, you know, operate differently. We – you know, our brains are as different as our facial features and our fingerprints.” Opening up conversations at that level means that, you know, we can reach more people. You know, that’s my, you know, take on it.
Perhaps we can work – and I know in the past, there’s been media pushes through mainstream media to, you know, think about different conditions. Perhaps a conversation about TV characters, or – and I remember Jess Thom and Touretteshero, she did some programme introduction, you know, work, and I’m not sure whether that was with Channel 4, as a run-up, I think it was at the Paralympics, you know, that prompted that. Let’s have more, you know, more visibility. You know, that – more visibility in every sector. You know, let’s have comic books with characters with neurodivergence in. Let’s have, you know, Presenters. Let’s have – you know, and right across, increasing that visibility.
I know I might’ve talked around in a loop there. However, it’s something that I’m really, really passionate about, you know, just getting it into the everyday conversations.
[01:08:10.795] Dr. Seonaid Anderson: Thank you, Lisa. I think that’s great, and I think that is – I think Joe started off by saying that, as well, this, sort of, groundswell at the moment, but if we can include Tourette syndrome and tic disorders as part of that wave of interest in neurodiversity, as well. And it sounds like the time is right for more collaboration, more PPI, so Patient and Public Involvement, in all of these research projects, as well, and working together. And maybe also working together towards things for the 7th of June, the Tourette Syndrome Awareness Day, too. But it feels like there are also some areas where we can see that the gaps are, that the training for healthcare professionals can be better, that the awareness – that, you know, getting the GPs online, as well, would be fantastic in terms of increasing their awareness and being able to spot tics, as well.
It’s just been fantastic to have quite a wide-ranging conversation about the current position here. If anyone else has any other points that they want to make, do say, but I want to thank you all very much for being involved here, and I know the work will go on. We will see – hopefully, some of us will be gathered at the European Conference, but if not, I would encourage people listening to get in touch so that we can help support them in their research, or signpost them to helpful information or patient associations, as well. So, thank you so much to the panel today for speaking with me. I think they’ve covered a whole range of different issues about the current state of Tourette syndrome, the diagnosis and treatment and some of the research that’s going on in the UK. So, thanks for joining me.
You can find out more information about Tourette syndrome on the ACAMH website. That’s www.acamh.org, and you can follow them on social media by searching for @ACAMH. That’s A-C-A-M-H, and any links to any of the studies, etc., will be associated with this podcast. Thank you so much for listening.