We are delighted to bring you the second podcast in our series that focuses on Tourettes Syndrome. Dr. Seonaid Anderson will be talking to leading players in the field, rising stars of research, clinicians, and experts by experience. She’ll be discussing the latest evidence-based research, what’s in the pipeline, together with insights for mental health professionals, those working with young people and tips for parents.
‘In Conversation Tourettes Syndrome’ continues with Lucy Toghill, education manager of Tourettes Action discussing ‘Education, and Educating, about Tourettes’.
Lucy Toghill is an education manager for Tourettes Action. Lucy works part time and consults with schools and education professionals to optimise understanding of and support for pupils with TS. Lucy worked in mainstream schools as a primary school teacher for 15 years before joining Tourettes Action; and she has a son with TS. Bio taken from Tourettes Action.
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.
Dr Seonaid Anderson: Hello, welcome to the Conversation series for the Association for Child and Adolescent Mental Health, or ACAMH for short. I’m Doctor Seonaid Anderson, Charted research psychologist and neurodiversity consultant with expertise in Tourettes syndrome. I’m excited to be here today as this is the second in a series of podcasts that ACAMH is hosting on Tourettes syndrome. Over the course of this series, we’ll be looking at the latest research based evidence, what’s in the pipeline, together with insight from mental health professionals, those working with young people and tips for parents.
I’ll be talking to leading players in the field, rising stars of research, clinicians and experts by experience. Today, I’m interviewing Lucy Toghill, who is the education manager at the charity Tourettes action. In her role, Lucy consults with schools and education professionals to optimize understanding of and support for pupils with Tourettes syndrome. Lucy has worked in mainstream schools as a primary school teacher for 15 years before joining Tourettes action, and she has a son with Tourettes Syndrome. Today, we’re going to be talking about the role of schools and clinics or health professionals in the lives of young people with Tourettes syndrome or tic disorders. Lucy, welcome.
Lucy Toghill: Thank you for having me today.
Dr Seonaid Anderson: Before we start, I’m just going to give a brief overview of what Tourettes syndrome or TS is. It’s a neurological condition that is estimated to affect over 300000 children and adults in the UK, and that’s one school child in every hundred. So which is the same prevalence of autism up about one percent. The main symptoms are physical and vocal tics, which typically develop in childhood. And tics can be simple, such as eye blinking and sniffing through complex movements and vocalizations that can, at the extreme end, be incredibly debilitating. For TS to be diagnosed, multiple motor trips and at least one vocal tic must be present for at least 12 months. Another issue that we’ll discuss later is tics wax and wane and change in their nature across time. There is more information about TS on ACAMH website with a very useful topic guide. Lucy, I’d like to start by asking, how did you become interested in Tourettes Syndrome?
Lucy Toghill: I worked for a teaching school for many years and and through that developed a special interest for SEN very early on in my career, actually. And then I had my son, who’s now 14, and he was diagnosed with Tourettes Syndrome when he was seven. It was a really tough time, not just to get the diagnosis, but especially getting the school to understand and get the right support in place for him. Tourettes Action really helped me and my family and I started volunteering for them at this time. And then the job came up and I went for it and I realised how important the role was actually and how important it could be to so many families. And so the role developed really into what it is now and we can now have so much support to family the schools, which is great.
Dr Seonaid Anderson:
And can you describe some of the work you do as education manager? You describe support. What does that look like?
Lucy Toghill: My main role is really to liaise with schools and parents to help them understand the needs of children with Tourettes Syndrome in school and to provide them with support and advice and teacher training and resources, really just to best support the child in question. Before covid, we do workshops around the UK for teachers to attend. Because of covid, I’ve sort of had to adapt that training to an online free training resource or online package for teachers that they can easily access. And we also do webinars by schools, teachers and parents to help get the information out there. That does sometimes mean that I am contacted by health professionals like educational psychologists, school nurses, mental health workers, CAMS and clinicians. They’re all interested in knowing how best to support the children.
Dr Seonaid Anderson:
It sounds like you try and take the whole school approach, as it were, and try and get all the staff a little bit more knowledgeable about Tourettes Syndrome. It’s not just of course teachers that the pupils come into contact with.
Lucy Toghill: Absolutely. I mean, it’s really important that this is the case. And it’s it’s really important that a child is able to attend school. And in order to do that, we need to make sure that the child is fully supported, they’re fully understood. They feel fully accepted by the whole school community, not just that class teacher. And, you know, it’s important to remember that children are in school more than they are at home. You know, school’s jobs to work alongside parents, to nurture these children, to become very balanced individuals as they develop into to adulthood and go off and find work in the real world, in the lives of the real world.
Lucy Toghill: If we had a child in school that had epilepsy, for example, or an allergy, we wouldn’t allow that child to go to school unless the whole school had had training on how to deal with that specific condition and manage those situations much like Epipen training. You know, if a child, an allergy to all the teachers, would have to know how to equip themselves in Epipen training. So the same needs to be said for children with Tourettes Syndrome, really, in my eyes.
Dr Seonaid Anderson: Unless teachers fully understand those hidden barriers to learning that child with Tourettes Syndrome may have, then how are they going to be able to even begin to understand how that child learns and how best to teach them? So we really want our children to have full access to the curriculum and be able to reach their full potential like every other child. And the same goes for other children in school.
Dr Seonaid Anderson: Children are very accepting and researchable generally to diversity and differences. And and I see that every day in my job, you know, we get feedback from teachers that say that they’ve shown the class Tourettes session peer presentation that we provide and what a huge difference it has made to that child in question. We have to be led by each individual child and some children are happy to suppress or control their tics and don’t want people knowing all about the condition. And we have to we have to accept that, too.
And you mentioned the peer presentation that Tourettes Action. Could you tell us a little bit more about what that looks like?
Lucy Toghill: Yeah, sure. I mean, it’s really a PowerPoint presentation aimed at children, and it’s something the child can get involved in. If you’ve got a child that’s very confident and they want to lead a class talk or an assembly, they can absolutely do that. And that’s lovely. But if you are a child or parent, the wants the information to be come across to the rest of the school, the class, and they may not want to be involved in that. And that’s fine. But, you know, the teacher can then deliver that.
Dr Seonaid Anderson: And so the work that you do is sounds mainly school focused. But it also sounds like you’ve got lots of information that might be of interest to health care professionals. What’s on offer specifically to that group of people?
Lucy Toghill: And we do encourage any health professional to take our training is focused on schools. I think there’s a lot they can gain from that or attend one of my webinars and many do. We have lots of health professionals come along that many CAMS or mental health services. I think there is a lot to be done for these professionals in knowing what real life is like. You know, day to day for these children in school. Many of the charities, very closely with that support the co-occurring conditions, would would say exactly the same.
Dr Seonaid Anderson: Yes. And you mentioned the co-occurring conditions. These are commonly things like attention deficit hyperactivity disorder, ADHD, or obsessive compulsive disorder, OCD. And I think we’ve sort of found in the past that 80 to 85 percent of patients with Tourettes Syndrome also have these co-occurring conditions as well and sometimes can be, perhaps more problematic than the tics themselves. I guess we also used the term health care professionals to sort of meet anyone the young person might come into contact with during their journey through diagnosis and treatment.
So that be GPs, nurses, neurologists, psychiatrists, psychologists and also occupational therapists and pediatricians and any of those working in the CAMS Service, which we’ve mentioned already. I know that you and I have both spoken with parents who report these challenges of a school for children with Tourettes syndrome.
And you mentioned these hidden barriers to learning. Sometimes that these are quite sort of neglected areas. And it would be nice to talk to you a little bit about some of those. Have you found with teachers, for example, that it can often be difficult to tell what is a tic, which is actually a tic or what’s the behavior. They might be quite difficult for them to tease them apart. And what is sort of naughty behavior? What would you say about that?
Yeah, absolutely, and that’s the number one question, actually, that I get asked every time. If I go into a school or speak I to a school, teachers will often ask me, you know, is this a tic or is this neurotypical bad behavior, you know, and and it’s often very difficult to unpick that at times. And even parents report and I know from my son in the very early days of diagnosis, I wasn’t quite sure what was a tic, what was OCD, what was him being, you know, typically misbehaving. But it’s really a question of getting to know that child. We need to spend time with this child at school.
Lucy Toghill: We need to ask the child, you know, I’m very pro pupil voice. I’m very pro teachers using a one page profile to explain to other teachers about their condition. And we want the child to be involved in that as much as we can really. We have had some teachers say that, you know, the child in question, it doesn’t sound like a tic because they’re being silly and everyone’s laughing at them.
But, you know, what I said to teachers is let’s consider this, you know, from a child’s point of view is actually a little easier to be accepted in class, to be seen to be naughty than it is, to be seen to be ticing and apparently being seen by your friends being weird and different. So I think it’s important just to let health professionals know and schools know that, you know, this can happen to children and to be aware of those children that are struggling in that way.
Dr Seonaid Anderson: We know that Tourettes syndrome has no effect on IQ. There’s no cognitive deficit as it were. But there are issues with learning, I think a common theme is often that there are some executive functioning difficulties. Certain tics can actually interfere with learning. Is that also your experience?
Lucy Toghill: The symptoms of around Tourettes Syndrome can have a massive impact on the child’s ability to learn, for example, hand tics. I mean, that would be quite obvious. If child’s not able to write. If a child’s got OCD, they might rip up their paper, scribble out their writing. We know that children have visual tics. They might be looking around the room and counting things, you know, and all the other co-occurring conditions that come along with that. And as you Seonaid, you know, it’s not the tics themselves sometimes that all these barriers to learning but, you know, with ADHD, you’ve got the distraction and the lack of concentration and you mentioned executive function skills, Seonaid.
And that’s that’s really important. And this is something that doesn’t affect every child, which was syndrome. But certainly when you talk to teachers and certainly in the work I do. An educational psychologist will probably back this up, really, from my experience. That executive function difficulties is something that we see commonly in children, with Tourettes Syndrome. And, you know, we’re talking basically about these three main set of mental skills which are working memory, flexible thinking and self-control.
And these can affect things such as organizational skills, planning and focusing, starting or finishing tasks and moving from one task to another. So for this, we need to be modeling in school these set of skills and scaffolding that for children. And we need to be giving children the time to process their thought and giving time for pause and effect and keeping those expectations clear and consistent all the time.
Dr Seonaid Anderson: So that’s the kind of academic side. But there’s also this element with some people with Tourettes syndrome. And this is a bit of a myth that having a diagnosis of Tourettes syndrome means that you will have the swearing tic or coprolalia. But actually, research has found that only about 10 percent of people with Tourettes syndrome will have that coprolalia tic. But there can be, it can be challenging and confronting nature of that and also other tics as well, where it’s not socially appropriate to say something like a tic will come out and affect on other students and teaching staff as well. Is that you’ve come across?
Lucy Toghill: I actually see a lot of children with coprolalia because it’s actually one of the most difficult things to manage in schools, as you can imagine, with safeguarding. That’s both for children and staff. You know, we’ve had staff that even though they’ve had the training, they totally understand that this condition is involuntary and there’s no malice behind the tic. If you’ve got a child that is particularly obsessed with one staff member and they’re picking out personal things about them, you know, their tics and making them say things about them, they’re quite personal.
We need to take care of staff. You know, there may be times the staff are not happy with that all the time. We need to consider that, you know, I advise schools really to have a point of contact in school, in their pastoral team for someone that’s trained that both students and staff can go to if they’ve been upset by someone’s tics. And also another thing we ask or we suggest people put in place when schools ask us is that they possibly have a letter that they can send home to parents, obviously, with the permission of the child in question and their parents to help explain Tourettes syndrome and nip any bullying or complaints in the bud as soon as we get whiff of them. Schools, where possible, you know, we need to explain to other parents that the school is very supportive of this child, and they will be intending to make this child feel accepted by the whole community and possibly offer parents at coffee morning or afternoon to come in and talk about Tourettes and pick up some information and ask questions.
You know, we don’t want this to be a hidden condition within the school because in the case of coprolalia, it is not going to be hidden at all. You know, it’s going to be out there and it’s going to be obvious to schools. So I think we need to address it and be open to parents, really.
Dr Seonaid Anderson: I know that from speaking to parents and teachers, other issues that come up for students with Tourettes syndrome, things like disinhibition, we’ve talked about OCD as well, and lack of control perhaps, and that could be oppositional behaviors to and rage is something that we hear often from parents. This is perhaps more commonly seen at home than in school. And that can be a point of difficulty as well, with behaviors being slightly different between home and school environments. And we know that different environments can set off tics or bring them to the fore. And sensory integration issues as well can be fairly common with young people with Tourettes syndrome as well.
Lucy Toghill: Yeah, definitely. I mean, you know, what I would say to clinicians and schools is that, you know, you’ve got a child say there’s an eight year old child with Tourettes syndrome that’s been diagnosed. They don’t really understand quite yet how it affects their body, but what they do know is that they’ve got lots of involuntary movements going on and their body is making them say things they don’t want to say and make sounds. So, you know, consider that children think, well, no wonder that child has a lot of rage going on if their body is doing things that they don’t want it to do.
And as you said Seonaid, you know, environmental factors are huge in this. We know, you know, even adults have reported to us that a change of environment, a change of smell, heat, touch, hearing if there’s a particularly acoustic sounding room, can all be triggers to setting off their tics. So, again, it’s very important that we use people voice and we talk to the child about what their triggers may be. And that can be very hard for a child, with Tourettes, you know, a child may not know what their triggers are. We know about this premonitory urge, don’t we? We know that, you know, some children and adults get that feeling before a tic comes. And that’s something that therapist can work on for CBT.
Just draw on an example, I had before Seonaid, if that’s OK, that, you know, I went into a school that thought a boy didn’t like maths or he didn’t like the maths teacher. And, you know, his tics really kick off in maths and actual fact, when we took this boy into the classroom, the math classroom, you know, without maths, without a teacher, we sent him where he sits.
And when we sort of tried to unpick what it was, it was trigging off his tics in that situation. And it came to that it was the chair he was sitting. And on the chair scratching on his school jumper. Now, I’m not saying this is is as easy as that, but we did we took away the chair and that he was much more settled in that class and less ticy. And as I said, I’m not saying it’s easy and that easy in a situation, but do consider, you know, the effect that these environmental factors and sensory issues have on children with Tourettes syndrome because it’s very common
Dr Seonaid Anderson: That such an interesting example as well. And we haven’t actually talked yet, I think, about children Tourettes syndrome actually trying to suppress and control their tics while learning. That can also, I imagine, absorb a huge amount of energy and concentration from them to try and control their tics while they’re in the classroom and also subsequently affect their learning. They may not be able to take everything in or have taken everything in regards to instructions and things like that, I would imagine.
Lucy Toghill: Absolutely Seonaid, yeah. I mean, we know that trying to suppress a tic, and children, you know, we encouraging schools not to suppress, because we know that that can possibly have a knock on effect. And we know that suppressing is very uncomfortable for people. That’s what they report. And I’m actually suppressing is very tiring. So you may have a child in class that presents very disengaged and bored and not learning, and that may be dealt with through the behaviour. But actually consider that all the time that you would doing the input, you know, in school, that child may have been ticing. And when you’re ticing children tell they can’t concentrate because they’re concentrating on that tic.
Or, you know, the flipside of that is when you’re when you’re suppressing, you know, it’s not just ticing when you’re suppressing your very tired and you’re trying to hold that in. And that takes a lot of concentration. So either way, you know, that child is going to have difficulties concentrating. So it’s really important that we address that in school and that the teacher acknowledges that so that they can go and help the child after and make sure that they’ve understood.
Dr Seonaid Anderson: We’ve been touching on this already, but could you talk a little bit more now about some of the termed reasonable adjustments that schools could be asked to make for a student with Tourettes syndrome.
Lucy Toghill: I mean, we know that schools have to be seen to be making best endeavours at school to meet all children’s needs in school. They have a legal obligation to make what we call reasonable adjustments, as you mentioned. Now, most schools will be able to do that within their SEN budget, their current SEN budget. And most children with Tourettes syndrome to be fair, will be able to have access to this and most of their needs will be able to be met.
However, this does depend on the level of needs of the child. It is very rare that we see a child with just Tourettes syndrome in school with pure Tourettes. In fact, as you mentioned before, Seonaid, is just around 80 to 85 percent of children with Tourettes syndrome will have these conditions and the most common being ADHD, OCD and autistic spectrum disorder. So if a child is presenting with other more serious needs from one of these other conditions, then it may be that depending on their level of need, that schools are unable to meet their needs in the given budget that they have available to them.
And in this case, we would look into applying for what we call in EHCP, which is an educational health and care plan, which is a, this is a legal document wriiten by the local authority, which sets out all the support that the child needs and the provisions on how those needs are going to be met in school. Teachers will be responsible, really, for providing most of the evidence for that. But also all the health professionals involved in that child’s care will be asked to submit reports and evidence to support that. And that could be educational psychologists, OTs, anyone that’s had input in that will be asked to submit a report. Educational Health and Care plan will also set out outcomes that will follow the child through to the age of twenty five, which is brilliant.
And this will of course, indeed, come with funding sometimes, not all the time. But if, depending on the need comes with funding from the local authority to help those outcomes be achieved. As far as reasonable adjustments go, we would expect to see a child receiving school before educational health and care plan needs assessment would vary really. And we would expect that child to be receiving some support from maybe a teaching assistant. That’s not to say, you know, certainly not one to one. Just some time with that teaching assistant to oversee the help they need. Work could possibly be differentiated for the child. Interventions could be put in place to promote positive mental health. And we know that a lot of that work is going on this year with the impact of covid. So our children are benefiting from that this year.
Another strategy we may put in place is permission for a child to leave the classroom if they become overwhelmed or feel the need to have a break. And let a few tics out somewhere private. And that’s very important actually that’s followed through. We don’t want the child just walking around the corridor you know we need again using that pupil voice and making sure they understand the use of that tic pass and, and that maybe they want to take their work with them and go meet someone rather than just walking around the school. And train the staff, you know, and that’s that’s an important thing for them to have.
Dr Seonaid Anderson: For making me think about any challenges from students or their parents. Do you ever face challenges from students, their parents not wanting the school to know about their Tourettes syndrome, you know, maybe a student refusing the support or the accommodations because they don’t want to be singled out as different. I can imagine it’s probably adolescence or older adolescents that. Have you come across that?
Lucy Toghill: Yeah, I have in both primary and senior schools, actually. And it’s as I mentioned in and we have come across families where they wish to not be different from their from other peoples and they wish not to have any special compensations for their disability. And we and we absolutely have to respect that, don’t we? You know, we have to do our best to support those children in any way that we can that’s acceptable to them.
And we know I mean, we know from studies mentioned that that doesn’t always have the best positive outcome. You know, what are we showing that child? If we are teaching them, they’ve got to hide part of who they are and they’re not allowed to be themselves. And we know from studies that this can have a detrimental effect on mental health. But in some cases, actually, you know, this is the right thing for the child and we have to respect that.
Dr Seonaid Anderson: And I would imagine also there probably more many more children with ticsor tic disorders. We know that tics are a common part of childhood and there might be children who may not receive a diagnosis, but they would still have the tics present would benefit from some kind of support as well. I think it’s impossible, not to mention covid this year. And you mentioned that just a few moments ago. Is that something that you’re building in to your awareness for teachers? Because you and I both. That can often be quite suggestible and so in anxiety provoking situation tics that sort of come out, it might be the sort of worst option at that time to come out.
So therefore, we’re hearing a lot of people with Tourettes syndrome saying that they have to go sniffing and coughing tics, especially at the moment under the current situation as well. Is that something that you’re seeking to schools about or try to make teachers aware that these are tics that their Tourettes syndrome students might be showing at the moment?
Lucy Toghill: Yeah, we have we have had teachers get in contact about that. And I think, again, it’s about getting to know the child, talking to the family. The covid situation has exacerbated a lot of children’s anxieties over the last six months. And we know you don’t need the anxiety, fuels Tourettes, and it fuels tics and the suggestibility of covid at the moment, children have got if they have vocal takes, it can be quite common at the moment to shout out I’ve got coronavirus or to exacerbate those symptoms of that as a tic, you know, and I think it’s really important that that is addressed with children and families.
And schools have to be really careful. They have to safeguard themselves. You know, if they’re unsure if its a tic or not, they probably would ask that child to be tested to make sure because they would need the evidence to school. But I think, again, talking to parents and the child themselves, you know, I haven’t found too many issues with it at the moment.
Dr Seonaid Anderson: I’m really interested in the psycho education that you’re offering, and just to bring in some research evidence behind those psycho education initiatives and researchers for the National Hospital for Neurology and Neurosurgery, the University College London and Tourettes syndrome clinic at Great Ordman Street Hospital carried out research examining the usefulness of psycho education for Tourettes syndrome. And they looked at whether psycho education in terms of giving other people, such as teachers or classmates, information about the conditions.
Was it an effective intervention for Tourettes syndrome? And the research consisted of two parts. The first was a review of other studies examining the effects of giving information about Tourettes syndrome, or ADHD, to children and adults, including peers and teachers. And the study found that giving factual information can make other people better informed and also lead them to think, feel and behave in more positive ways towards people with Tourettes syndrome, at least in the in the research study. So just telling people the diagnosis the person has without explaining what it is, doesn’t seem to have such a positive effect.
And the second research paper was an evaluation of what we’ve spoken about earlier, the peer presentations that involve children with Tourettes syndrome recruited through Tourettes Action, and they were using the Tourettes Action primary school presentation. So the researchers asked teachers to give a presentation about Tourettes syndrome to the classmates for children Tourettes syndrome.
And the classmates were given questionnaires before and after the presentation and interviewed in groups. The children Tourettes syndrome their parents and teachers who were also interviewed. And the aim of the interviews, focus groups and questionnaires was to find out what impact the presentation had from these different perspectives. The findings suggested that in general, the presentation increased the classmates knowledge Tourettes syndrome gave them more positive attitudes and behaviors towards the child Tourettes syndrome.
It also appeared to help the children themselves with Tourettes syndrome to feel more accepting of their condition. The more confident and less different and the findings suggest that it is useful to educate other people about Tourettes syndrome, and this will help improve the experiences of those living with the condition.
As I said, that presentation stayed updated. That was from 2013. But we don’t have a current evaluation of your presentation given in schools. But hopefully the impact of this new and improved presentation would be even greater than the previous one building on it. What about your own experience as a parent receiving diagnosis? Did you feel supported by school and health care services enough?
Lucy Toghill: Well, you know, I feel very strongly about moving forward towards lessening that gap. And as you know Seonaid, in services, especially to support families. And if schools and other services such as CAMS shared all these resources, it would be great and it would be so much we could do to make more of a positive message that’s given the point of diagnosis in offering families that lifeline really and making them aware of services that are available to them, not just with medication, but with behavioural therapies and information on charity such as ours so that we, so they can feel so much more empowered and supported and therefore less alone.
And you talk about my own experience, drawing on my son. Our experience, unfortunately, was waiting a long time to see CAMS. We were refused referral at first and then we were able to get one. And it was very much, we saw a psychiatrist who diagnosed us, and it was unfortunately just a case of, yeah, Tourettes syndrome. Off you go. You know, we were left to the point as What does that mean? What is a syndrome? You know, we didn’t have a lot of explanation, not a lot of time to talk about that in the appointment.
And I very quickly had to do my research as a parent as to what that meant for us and what that meant for my son in his life. You know, and it’s very important to draw upon the effect of a parent and that grieving process that a parent goes through from receiving that shock of a diagnosis. You know, the parent may say, gosh, is anyone going to love my child like I do? Are they going to be able to get a job, hold down a job? Will they be able to get, you know, drive? And the answer to all these questions is absolutely, yes. What is important is this, you know, the support we put in place and making sure that support is there for that child to make sure they can just carry on and thrive so think can get a point of diagnosis, that needs to be more support for the families so that they don’t feel alone and they feel that they are supported by both school and the information they receive from the clinician.
Dr Seonaid Anderson: I mean, we’ve definitely heard the issues from parents of children with the Tourettes syndrome about diagnosis and treatment. Why is it that is so fraught with difficulties and challenges from the very start of parents noticing tics in their child, and taking their child to the GP? It can be described as a bit of a battle for some. And obviously in some areas around the UK, it’s working much more smoothly. But it’s interesting looking at the differences between the parents, describing this immense challenge and other families where it’s much smoother.
I know that we’ve talked a little bit about diagnosis. Quite often when a child with tics is taken to the GP, there will be a period of about a year sort of watchful waiting to see if the tics come or go or if they’re still there after a year that they might get referred. And we do hear about people bouncing around the system from their GP to a pediatrician, maybe to a neurologist, maybe to CAMS and it seems like in some cases, health care professionals could be more educated about what Tourettes syndrome is and what it isn’t. We’ve heard of some health care professionals saying but your child isn’t swearing it can’t be Tourettes or maybe their sniffing it’s to do with an allergy. But what would you say about this huge challenge and difficulty of getting diagnosis and treatment in some areas?
Lucy Toghill: I think really, Seonaid, it is because the diagnosis pathway varies so much in every NHS trust. And this is what we’re hearing from parents and no one trust does it the same, which actually makes my job a lot harder for the help that I can give families and advice, because they’re pathway to diagnosis is so different. You know, some I hear from my work that some people get referred to CAMS by the GP straight CAMS and if they’re lucky enough to to get on the list and not turn down because their needs aren’t high enough, then, you know, the long wait to be seen begins. And some GPS referred a straight to neurologists, which again with the long waiting list can be successful. And then there’s some GPS have been known to refer to specialist tics clinics if there is one in the area.
But these, as we know, are far and few between. But some GPS will refer to a local child development centres if it’s not straight forward and there are other complications. So once successfully getting on the list and finally being seen, the next wait, if you like, begins. If Tourette syndrome is suspected and a child needs to be seen to be having both motor and vocal tics for at least a year to get that diagnosis. So, you know, we need to let parents know that it’s best to keep a log with notes and maybe videos dating back to the first time they started to even noticing the tics so that they have a good evidence base that they can draw on by the time they get to be seen. If there are any suspected co-occurring conditions going on, then, you know, the GP or specialist may refer to another specialist for further investigations.
And that’s not forgetting all the other tests that may be put in place by specialists that they will do with the support of school, for example, to decide if other conditions such as dyslexia, dyspraxia or ADHD or autism spectrum disorder is present. So you can see how varied the diagnosis pathway to Tourettes can be. You know, and I have known families takee up to three or four years, possibly more, to even get the diagnosis that feels right for them.
Dr Seonaid Anderson: It’s interesting you talking about parents perhaps taking videos. That’s something we’ve heard from clinicians as well and parents that the child may not present with tics at the clinic sometimes, which can be a little bit frustrating, so having some video evidence from home and diaries, as you say, could be really helpful in terms of informing the clinician. We touched on earlier that there are behavioral therapy treatment options as well. Sometimes, maybe in the majority of cases, medication can be offered for where tics are viewed as serious enough for some medication.
But there’s also behavioral therapy that can be offered as well in some cases. There are the European guidelines on the treatment and management of Tourettes syndrome, which can be very useful for clinicians to have. And they are the actually state that behavioral therapy should be offered as a frontline treatment for tics. But we do know that there is a lack of trained therapists in the UK. Some patients report not having been given any information at the point of diagnosis about behavioral therapy as a potential treatment. And that’s something that hopefully you and others can can help change.
And parents have describe this diagnosis moment as a bit of a cliff where they’re not given much information, they’re not signposted to support associations or given leaflet information for them to digest afterwards. So that would be something that we would hope to improve upon. And patients report one thing, the behavioural therapy, but they’re unable to find the help. So hopefully there’ll be more training of clinicians in the UK and hopefully using telemedicine, which we’re all getting much more used to now, having meetings and perhaps even clinical consultations over the Internet is the way forward to allowing access to many more people, just thinking about what services are available to the clinicians, also to inform the parents about the point of diagnosis.
I’m sure it must be very much more satisfactory also for the clinician to be able to give the information leaflet to the parents and point out that there’s a patients association in that country and guide the family towards extra help as well. I’ve recently been co-creator of an online directory of support of Tourettes syndrome patient associations around the world. And this can be found on ESSTs website of the European Society for the Study of Tourettes syndrome, which is a great resource.
And there www dot essts dot org slash directory and it gives an overview of the most important services and contact details of the Tourettes syndrome patient associations really around the world, and I think is the most up to date list at the moment. And this allows the professionals to share this information with their patients and open the way to support for them. And this directory has also been forming part of a chapter in the clinical textbook being written at the moment about Tourettes syndrome syndrome.
So by including it as part of a clinical textbook, it means that that point of diagnosis, clinicians can use the chapter to show the patient, maybe able photocopy it, what support associations exist in their country. It feels like what is needed then is a sort of more holistic view of the child and how to support them in a kind of multidisciplinary approach with the schools and the clinics and maybe having a clinical assessment where tics and co-occurring conditions are taken into account, a variety of treatment options might be offered, and a closer relationship between clinics and schools with more awareness of the condition.
Is that something that you think if we’re thinking you mentioned the word schools standard earlier, is that some way towards that? And I should also mention that there are no nice guidelines for Tourettes syndrome, but what would you advise me on how to improve the situation at the moment?
Lucy Toghill: Definitely. In some cases, Tourettes syndrome can be very common very suddenly. And we’ve had a lot of covid. It actually have lots of reports of children, you know, having sudden symptoms. And this can be a massive life change for families and very traumatic, to say the least. You know, so it’s really important that when this happens, families have access to clinicians much sooner and to those who are experienced and competent enough to offer advice or signposting to Tourettes regarding schools to get support in place straightaway.
Otherwise, we may be facing a lot more mental health issues. And that’s a bit of a worry and possibly school refusal. You know, these children it’s not a case of of not wanting to go to school. Sometimes its a case of they literally cannot because of these issues and what school refusal happens, that can be quite a slippery slope.
Dr Seonaid Anderson: And it feels like also, this closer relationship between schools and clinics might be helpful if clinicians can also sort of add to the information and training that you offer to schools, that doesn’t seem to be any input from them but they have such such expertise and that it could be also sort of filtered into the information and training as well.
Lucy Toghill: There should be some flow of information between health care professionals and school. Ideally, that would be fantastic. And maybe by feeding this information to schools on behaviour interventions. And that’s obviously that’s not to say that we would advise teachers take on any behavioral intervention strategies. That certainly has to be delivered by a skilled therapist. But any advice on how to sort of aid that in school would be very useful for teachers, but also not expect teachers to carry out these interventions. But it does seem a bit of a missed opportunity to not feed back on what CAMS wants to see being done in children in school. So it works vice versa, really works both ways, you know.
Dr Seonaid Anderson: I think it’s been a really interesting conversation, listening to all the thoughts and advice that you’ve got. If listeners to this podcast want to find out more information about the online training or Tourettes syndrome awareness, some of the strategies, etc., what would you suggest?
Lucy Toghill: Well, you know, the first sign of contact for any family or school would be Tourettes Action website. I would suggest where they will be offered information on an option of ways contact people. Through our live chat facility or our help desk. So I would definitely recommend they get in touch.
Dr Seonaid Anderson: Great. And the website address for that is www dot Tourettes Action dot org dot uk. They can look ACAMH the web. There’s a Tourettes syndrome topic guide and other podcasts there. Lucy,, finally, what would your take home message be.
Lucy Toghill: I think really the important message really here is, is that spreading awareness is the key as well as working together and sharing knowledge. And it goes back to that say the old age saying of knowledge is power. And I think that by working together, we could make a more powerful positive impact and a real difference to so many people’s lives.
Dr Seonaid Anderson: Thank you ever so much, Lucy. That was really fascinating. You can follow Lucy on Twitter, the handle @LucyToghill and her email is Lucy@ Tourettes-Action dot org . uk. You can follow me Doctor Seonaid Anderson on Twitter @SeonaidAnderso2 and email me at contact@neurodiverse dot org. If anyone listening wants more information on Tourettes syndrome they can visit the ACAMH website that’s ACAMH dot org and you can follow them on social media by searching ACAMH.