‘Tics, and Tic Disorders; the sudden onsets and influences of the pandemic’ – In conversation with Dr. Tammy Hedderly

We are proud to bring you the third podcast in our series that focuses on Tourette Syndrome. Dr. Seonaid Anderson will be talking to leading players in the field, rising stars of research, clinicians, and experts by experience. In this podcast we speak to Dr. Tammy Hedderly, Consultant Paediatric Neurologist established and leads the Tics and Neurodevelopmental Movement Service or ‘TANDeM service’ at St Thomas’ Hospital in London.

Tammy gives an overview tics, tic disorders and Tourette syndrome are, and the work of the TANDem service. The conversation moves to findings in Tammy’s recent paper, in particular, three groups are identified. Firstly, some people, who have tics and tic disorders already, are experiencing an increase in the intensity and frequency since the pandemic started. Secondly, people who may have had very mild tics but because of the situation of the pandemic, potentially led them to meet a threshold for diagnosis for a tic disorder. And finally, a group of adolescent females where it seems almost like a complete and sudden onset in these adolescents.

Tammy also offers advice, for both parents and clinicians, as to the type of questions to ask, how to manage tics, and the difference this could make.

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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

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 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’
• Episode Seven ‘Understanding Tic Disorders: A Round Table on Diagnosis, Treatment, and Research’

Transcript

Dr. Seonaid Anderson: So hello. I’m Dr. Seonaid Anderson. I’m a Research Psychologist and a Neurodiversity Consultant with an interest in tics and tic disorders, like Tourette syndrome. I’m really excited to be here today. This is part of our series of podcasts that ACAMH is hosting on Tourette syndrome and over the course of the series we’ve been looking at the latest evidence-based research and how to support young people in school as well as discussing some of the treatments, and today I’m speaking with Dr. Tammy Hedderly who is a Consultant Paediatric Neurologist who works in the Tics and Neurodevelopmental Movement Service or TANDeM at St Thomas’ Hospital in London. The title of our discussion is ‘Tics and Tic Disorders, Sudden Onsets and Influences of the Pandemic’. Can you start by describing a bit about the clinic where you work and what it offers and what kind of patients that you see?
Dr. Tammy Hedderly: I work with a team. Though a few years ago now we recognised the importance of children with movement difficulties having access to a number of professionals that could look at the difficulties a child was having from several angles, including from their psychological angle because some of the children we see, for example, children with Tourette syndrome do have psychological problems together with their movement difficulties. So we know, for example, that tics can come together with OC behaviours, obsessive compulsive behaviours. So I wrote a grant to develop a service in which we could employ a psychologist working alongside a neurologist and also a psychiatrist assigned to the clinic, and then with time we expanded. We’re very fortunate now we’ve got two nurses and we’ve got two psychologists. So we do see lots of children with movement difficulties. We tend to prioritise children who have difficulties that can respond to psychological treatments as well. So, say for example, dystonia with complex motor syndrome where the children might need complicated medical care. We differentiated a little bit away from that service. So we’ve got services mainly dealing with movement. Complex movement disorder service and then the Tourette neurodevelopmental movements service. Well we’ve been going for many years. We have a great team and we do multidisciplinary assessments. We do unfortunately have a long waiting list because the first appointment is quite long and detailed and we include in that assessment of the common comorbidities and co-occurring conditions that go alongside movement. We do, not just tics, we do movements like stereotypies. We see children with functional movement conditions and we see paroxysmal movement conditions, like paroxysmal dyskinesias which are quite rare.
Dr. Seonaid Anderson: It’s a Tier 4 service. So what kind of journey will the patients have had before they sort of come to see you?
Dr. Tammy Hedderly: Ideally as a clinician you want to be able to help anybody that’s referred to you. So traditionally I always accepted all referrals, including general practitioner referrals which often are the early referrals and provide the best support for families because they get straight into the service. They get a rapid assessment. Of course the referral numbers increased, so we are under pressure because it’s an NHS service to provide regional services. So I work at South Thames Hospital, Evelina London Children’s Hospital. So we take from the South Thames area and you know that we’ve got Tourette and Tic and Movement Services at North, over at Great Ormond Street, over at St George’s as well. There’s some services in Nottingham and over in the UK probably four or five Tourette Services. So we are under pressure not to take from out of region. We’ve also got pressure not to take now GP referrals direct. We’re supposed to take from paediatricians and from CAMH Services. The reality though as you know is that it’s very hard to get into those services because of the stretch. There’s a lot of people being referred. There’s also limited services. We have flexed our pathways somewhat over a few years and the most important thing I would say to that question is that we should be striving to form more networks and more liaison and discussions and support working locally where possible and then have a bespoke type model where clinicians have access to advise if they need it from a tertiary and quaternary service. It’s not a straightforward answer because at the end of the day there’s patients and families who need help and I was having this discussion very recently trying to suggest…I mean, I don’t want to get into politics, but at the end of the day I think we have to stay focused on what we can do and then try and work towards how we provide it and when you are informed that there’s fines, for example, if you have long wait lists, that’s not a concern for the families. What they want is a service that can respond and provide clinical care for their often quite desperate need because they haven’t been able to find anyone to support them.
Dr. Seonaid Anderson: I know that from parents they’ve really felt there’s such a patchy service across the UK and in some areas there doesn’t seem to be a clinical pathway for tics and Tourette syndrome and my colleague, Bethan Davis and I made an animation recently just to try and highlight some of that complexity that you’re talking about and sometimes patients end up being, sort of, bounced backwards and forwards between professionals as well. I wonder do you think something like NICE Guidelines for tics and tic disorders would be a step forward in terms of solving some of those issues?
Dr. Tammy Hedderly: Even with our own little service we’ve tried to create pathways to referral and it is a complex area because you know what the ideal pathway would look like, and then there are often so many barriers because we all rely on the provision of services and the availability. Even though I work in an incredibly supportive organisation I see someone, we make a plan but then there’s no one at the end of that plan to deliver the care, either locally where the child ideally needs it or even within our own services because of redeployment…I mean, obviously Covid hasn’t helped with redeployment and sickness and changing circumstances, people wanting to live and be at home with their children. So there’s lots of reasons why the services have been stretched. I think it’s worse than it has been for a long time in terms of access to services, and as you know it’s always been a problem. Then we’ve also now seen this escalation in children presenting which is unprecedented and I am concerned of how the services are going to cope with that demand. We might need to think creatively about other ways to provide support and care through our traditional clinic model.
Dr. Seonaid Anderson: Just to give a quick introduction for those people that are listening as to what tics, tic disorders and Tourette syndrome are. Is it possible to just give, sort of, a quick overview of those characteristics?
Dr. Tammy Hedderly: If we’re looking at tics we define tics, there are two types. There’s either movements or sounds. So usually called motor or phonic tics. Sometimes vocal, sometimes phonic. These are quite typical movements that are often suggestable. Very brief. They involve different body parts. Traditionally in tic disorders the tics start around the ages of four to six. They start usually around the eyes, blinking, around the face and the head and then often spread down to involve other parts of the body. Overtime they have features, like waxing and waning. So there will be patches where the tics a lot obvious and at other times and quieter periods tics are associated from about the age of eight onwards or nine with a premonitory urge and this is where the children or young people report a build-up of inner sensations, tension or tummy ache or headache or pressing feeling, but then released when the movement or sound occurs. They’re somewhat suppressible in some children and young people and it’s the suggestible nature, the ability to suppress the presence of a premonitory urge and when the characteristic features which are interesting, I usually say to my patients tics won’t injure the brain because the movements and sounds are all things that we would sometimes do anyway. So you might rub your nose or blink your eyes, but they’re happening in an unusual place at an unusual time and they’re movements and sounds that aren’t being regulated and inhibited by the brain. So they release and this is helpful because I think it reassures lots of people that actually if you can do those movements themselves that’s why they’re not particularly damaging, although of course they can be very annoying and uncomfortable. That’s an interesting characteristic because this is one of the things we’re seeing that’s quite different at the moment, and up until recently many children expressing tics really don’t want them and they don’t like them. They want them to go away and some of the novel presentations we’re seeing at the moment is a certain, in some children as well almost a certain release of enjoyment and relaxation about the tics and some young people are almost laughing about the tics and enjoying them, and that’s an interesting phenomenon that we haven’t come across and we don’t quite understand at the moment. It’s an interesting characteristic and something we need to keep an open-mind about.
Dr. Seonaid Anderson: And tics in general, I mean, would you say that tics are commonly more common than we think? If we just think, you know, they can be childhood tics that may not reach a diagnosis of a tic disorder, but actually they can be quite common?
Dr. Tammy Hedderly: Yes, I think definitely very common and certainly around that age and early childhood. They’re considered a developmental phenomenon and it’s not uncommon to have a few tics that wax and wane and children grow out of them, and may not have even been noticed by the child or by the parent. I think when the tics become more empowering or the child starts to report annoyance, we’re moving towards probably a rarer phenomenon. I mean, we know that the figures for prevalence of Tourette syndrome in childhood is probably around 1%. I mean, that’s one in 100. It’s quite common, but I think we know that lots of people don’t seek a diagnosis and that’s in the population where the diagnosis is made. So it’s going to be higher than that.
Dr. Seonaid Anderson: I think that’s sometimes quite a surprise when you talk to people that maybe don’t know so much about tics. That actually the prevalence is 1% for Tourette syndrome and they might be quite surprised at that, but also with this media representation that it involves swearing and we know actually through research that it’s just around about 10% to 15% of the people that have coprolalia have the swearing tic as well. There seems to be, sort of, almost three groups or three kinds of issues happening where really people who have tics and tic disorders already are experiencing a real increase in the intensity and frequency of tics since the sort of pandemic started, and then there’s another group of people who may have had very mild tics because of the situation of the pandemic. Then this has led them to perhaps meet a threshold where they would in fact need a diagnosis for a tic disorder and then there’s another group of adolescent females you discussed in your recent paper where it seems almost like a complete and sudden onset in these adolescents. Is that a fair summation of what’s been happening during the pandemic?
Dr. Tammy Hedderly: I think there’s probably a little bit more crossover within those groups, but the more children we’re seeing it’s not quite as clear-cut as, you know, being able to characterise children in this way, and I think there is another group where the children are reporting that their tics are actually much calmer. These are the young people who were known to us in clinic already who aren’t presenting during Covid lockdown, but when we’re asking them how things are they’re saying, actually things have been much better without maybe the pressure of having to get up and go to school. Being a bit more relaxed. Spending more time at home. So I think we must be careful, as we always have to be in any sort of observation that it’s not referral bias. We’re not focusing on it because it’s in our current clinic. So I’m trying to reflect and think about all the young people who are doing quite well that we keep that open-mind and explore why people are so much better.
Dr. Seonaid Anderson: These sort of sudden and new onset cases of tic like behaviour, can you tell us a bit more about that? You’ve wrote a recent paper and sort of suggesting that the pandemic stressor as we could call them, such as loss of social support and academic challenges of distance learning, etc. and, sort of, emotional distress to do with the restrictions? Do you think that’s at the heart of what’s happening? Why are these adolescent females coming forward with this, sort of, florid onset?
Dr. Tammy Hedderly: This is very complicated. The answer I’m going to give you, you know I’m going to tell you we really, really don’t know at the moment. I think we need to research what is happening and really be careful, together with clinicians and researchers and academics across the world to try and understand this phenomenon. It is, so personally for me I found it quite challenging because of the increased workload but I’m at the same time feeling a desperate need to help people. This is coming with quite marked distress. The families are often beside themselves and haven’t really got any tools because this is such sudden onset. There are some hypothesis I’ve, you know, thought about and discussed with colleagues and we are seeing a group of young girls who are telling us from their own stories that they’re using social media, certain websites and viewing certain characters who have become very, very famous. So this is a hypothesis at the moment and I don’t think that this is going to be as simple as something like mimicry or suggestibility directly because the families that we’re seeing where this is happening where the young girls are presenting with florid onset, sudden Tourette on a background of very few tics, if any, often come from families where there might be a first degree relative with Tourette which is very interesting or there may be a sibling with ADHD or a diagnosis of autism spectrum or a family member with autism spectrum and, or even mild neurodevelopmental difficulties that haven’t reached diagnostic cut-off. So we have started collecting with the family’s permission lots of data around these issues. Whether there’s some neurodevelopmental vulnerabilities in the young girls and then combined with other factors, like an exposure to charismatic characters on social media that somehow adjustability. We need to talk to the social cognitive scientists and the psychologists about this in more detail to try and understand that, as well as the researchers on similar, kind of, things that have happened in the past where there’s been a sudden increase in movement difficulties. We need to think about the functional story because some of the tics have a functional type characteristic and have a slightly different characteristic to Tourette related tics, although I’m also quite cautious about symptoms differentiating the two because the management of functional tics versus Tourette related tics and sometimes you have the two, often you have the two actually in the same person. The management techniques are similar, like distracting attention training focusing on suggestibility and lots of…we use little psychological techniques. I think if you’ve got functional tics and you’re dealing with a clinic where going to use lots of medication this is quite important to differentiate the two, because we find that often they don’t respond to medication in the same way as some of the more typical Tourette related tics. So a lot to talk about. A lot of work to be done. I can tell you we’re in discussions with our colleagues from around the world and our European Tourette Society colleague who are seeing very similar patterns and I think that, I don’t want to be just focused on social media, but I was very concerned to see that some of the young people on the social media have millions of views and if you look at hashtag Tourette on one particular website there’s 3.4 billion views which I was astonished by, and I think we definitely have a lot to learn from the people who are presenting. One of the biggest challenges we have at the moment is what do we call this? By definition I didn’t mention that, but obviously it’s arbitrary when we say the definition of Tourettes it’s created by a group of people and we say the tics have gone on, waxed and waned for more than a year and that was thought up many years ago as part of a defining, well the definition of Tourettes because there’s so many people who have a few periods of waxing and waning tics. So people said, well we can’t have so many people with Tourette, but you can see it’s not really science based. It’s not taking into account the neuro-biology of tics. It’s just people saying, well if the tics have happened for a year we should call it Tourette, and if it’s under a year we shouldn’t. So when the girls are saying, well have I got Tourette, well strictly speaking if they haven’t had tics before this sudden onset they can’t be called Tourette which is, you know, sometimes challenging because it may have been that the girls have identified as having Tourettes and we don’t know yet what’s going to happen. We’re hoping that the tics is going to go away as quickly as they came.
Dr. Seonaid Anderson: I mean, in the past, like, I understand what you’re saying about in order to achieve a diagnosis of Tourette syndrome and tics have to sort of be around for about a year, but I mean, would…you know, I think there’s a lot of stigma also around the phrase of the diagnosis of Tourette syndrome and maybe in the future it might be called something else, I guess. You know, tics spectrum disorder or something like that. Would you in these cases, sort of, refer to the symptoms a bit more like tic like behaviour?
Dr. Tammy Hedderly: That’s a really good question. I don’t really like terms like disorder and syndrome and we both agree that neurodiversity and staying positive and describing personality traits as spectrums are probably preferable and often the families prefer it. So I do have that discussion with the family directly, usually, and I tend to prefer the term Tourette spectrum. If I write in my letters, unless somebody feels strongly they want to use themselves, the patient wants to use the term Tourette syndrome I tend to talk about the Tourette spectrum. I think when it comes to these new presentations at the moment I’m calling this tics and tic like behaviours. Tic like attacks. Functional tic like movements, depending on the individual because there’s a surprising number of the girls who have this florid onset, severe presentation, never seen a doctor with tics, but when you go back through the history may have had some subtle, unrecognised tics which is quite an interesting phenomenon. So they may have been to the hay fever doctor with some sneezing. They may have had some ophthalmology visits or optician visits for eye blinking and sometimes they have obsessional compulsive type personalities and perfectionist traits. There’s some patterns emerging. I don’t want to say too much too early because we haven’t collected and analysed all the data yet. Although that is planned and that is happening.
Dr. Seonaid Anderson: I think that’s interesting also for other clinicians to hear as well. What kinds of questions they should consider asking about when they’re taking a history as well? You at this tics specialist centre do you think there’s going to be a difference down the line with GPs and CAMHs clinics? How will they be managing this influx? What advice could you give to clinicians?
Dr. Tammy Hedderly: Well, I mean, I think because of the difficulty getting rapid access to services, the first thing to think about is that the tics and tic like attacks and functional tics and Tourettes are managed quite similarly with non-suggestibility. All the episodes will get worse with lots of positive attention and reward and massages for tics, hot water bottles they’re all things we advise against during the episodes of tics. Of course you can have attention but not during the episode of tics. So by trying simple selective attention, by which I mean moving attention away to having attention around the person when they’re not ticking, and if they are having tics whatever type, trying to practice moving away from that person so that the tics can calm down and non-suggestibility. So there are some generic techniques that work for all of the types of tics. I think that in terms of the questions to ask, personally I think it’s very important to ask the young people what they are accessing about tics. What they’re looking at. What media sites are they on? Are they someone who’s spending, because of lockdown a lot of time in their bedroom alone on unsupervised media use? Of course the teenagers aren’t so keen to talk about that necessarily, and I’ve had situations where the girls have got quite upset with me when I’ve asked some of the questions about it and actually have said no, no and then afterwards maybe have said, well actually I have probably been spending too much time on this particular site. So they are reluctant sometimes to talk about it. So the questioning has to be careful and sensitive and even parents who tell me they know their child very, very well and they’re very supervised and they turned on parental controls. With careful questioning and with time with the psychologist it sometimes come to light that there’s been a lot more exposure to Tourette related and tic attack sites, and if we think about the science and mechanisms and neurology of tics, so we think about what we were saying at the beginning of the podcast that suggestibility and talking about tics can exacerbate tics and make them worse, and then you combine that with a young person who’s spending a lot of time alone watching videos or even being in a room with somebody with tics or in an environment, whether it’s virtual or real it wouldn’t be surprising to see this bigger escalation in the presentation, and we know that, don’t we, from when we’ve run groups for young people with tics. So we’ve had people together and the young people report that when they see someone else with a particular tic it makes them generate the same tic, and we don’t understand why that is fully. We’ve got some ideas. It’s the neuro-biology and neurological generation of mimicking people’s actions or tics. It is complex and we don’t know why, but I suspect there’s all these mechanisms at play. For the GP and the paediatrician and the person with the…a teenager in front of them, sudden onset rise and focus attention away from the attacks and the tics. So try to reassure the person sensibly that this is going to pass quickly. Distract from it. Think about something else. Let it calm down and then reinforce and reward the young person when those aren’t happening, and we need to make sure that the episode isn’t in itself getting inadvertently rewarded by secondary gain. So, for example, some young people they’re having their tic attacks and their parents send them to their bedrooms to relax. They’re tired and they give them their electronics and of course that’s very, very rewarding and quite addictive for a young person’s brains. So the attack is going to be inadvertently, probably involuntary and subconsciously be reinforced. So switching things around and saying let’s leave the media downstairs, the screen time and let’s have that when you’re not having an attack.
Dr. Seonaid Anderson: And I think that kind of psychoeducation for parents can be really perhaps eye-opening I would imagine as a parent if you’re seeing your child have a tic attack and you’re distressed and they’re distressed, you know, it’s almost a parental instinct to comfort and like you say massage and hot water bottle but actually you don’t accidentally reinforce what might be happening, and I think you’re absolutely right in terms of the support groups. I know that having worked at Tourettes Action that was sometimes a concern of people coming and they didn’t want to, sort of, pick up tics from other people, but they did for a while and maybe it would just be a few hours or maybe a day but actually what they got out of coming to the support groups having met people with Tourette syndrome perhaps for the first time so that outweighed any sort of annoying tics that might be around for a little while after, and I think that’s the difference. Also I wonder if that’s one of the differences between social interaction on even an online community where there is advice and information exchanged as well. As opposed to a different kind of platform that we’ve been talking about where there’s just a video and not really much support or advice or signposting to education resources to say I see, you know, you’ve got this tic, you feel anxious then maybe try and look at these resources. That seems to be lacking perhaps in some of those social media platforms.
Dr. Tammy Hedderly: Yes, that’s a really good point and I agree. I mean, I don’t want to be overly negative because some of the children have said to me I find some platforms very helpful because I don’t feel alone with my Tourettes and it helps me with my identity and it helps me access the support. Many of my families, as you know, we work very closely with Tourette Action, find it an incredible support. So it’s that balance, isn’t it, trying to promote the positives from access to screens and time on social media versus the potential difficulties, and I think there’s a lot of work for us all to do to try and tease this apart, and I think we’re going to have to involve the young people and helping us work out what the benefits are and what the risks are and asking them to inform how to have very powerful young girls getting over 300/400 million views and likes. This is something that an incredible achievement for them, but we need to therefore harness them and say, how can we therefore get the message out to help the people and support the children as well.
Dr. Seonaid Anderson: It certainly seems to be a phenomena in its own right. If we are thinking about this group of young adolescent women and their clinical presentation and this new sort of onsets which appears perhaps to be functional in nature, what do you think the long-term prognosis will be for these adolescents that have had this experience of this sudden onset?
Dr. Tammy Hedderly: I think there’s going to be different groups. There’s some young people I’ve seen because I’ve been noticing this phenomenon since around October/November 2020. So already we’ve seen some children just get rapidly better and return to full health and we’re following the children up, but they’re really reporting, actually they went away very quickly. So that’s great. We know some people it’s really, you know, going away as quickly as it came. I think that what we’ve got to be careful of is what are the vulnerability factors that made that happen? Is this going to change into another condition in the same person? Is something else going to pop up? Is this actually a surface marker, a warning sign of something else? A vulnerability within that young person or family. Then there’s the group where we don’t know. Is this an exacerbation of a Tourettes? Is this a masking of a Tourettes and is the young person going to have more significant Tourettes than they would have had otherwise if there hadn’t been the Covid pandemic, and are girls who may have gone through life with a few subtle tics and not presented, now going to present and now live a life with Tourettes? I don’t know. That may be a group. Are there young people who have this explosive onset and then the tics settle and they never have a problem again. Let’s hope so, but I think that it’s too early to say and I think we just all have to keep an open mind, be as supportive as we can be. Recognise that this is a real issue. We have to listen to the young person. Think about what it is that they need support with.
Dr. Seonaid Anderson: It sounds like research is going to be vital in terms of…and collecting data is going to be vital in terms of understanding the factors associated with the emergence of this and the continuation or cessation.
Dr. Tammy Hedderly: I think it’s going to involve more than just doctors and researchers and clinical scientists. It’s going to need the social and cultural understanding, and like you were saying the people who understand in-depth social media influence and those sort of factors as well. It needs everybody working together.
Dr. Seonaid Anderson: Just quickly as we’re sort of drawing to a close, I’m just wondering about the immense pressure that’s been on your service and I think you’ve had a, kind of, doubling of referrals in regards to the acute onsets. What kind of affect do you think, what has that had on your service? Do you think there are barriers preventing young people from getting the help that they need?
Dr. Tammy Hedderly: Within our service we’ve had redeployment. We’ve had sickness. We’ve had people who have had to be at home because their child has had Covid or been out of school. We’ve had staff members working very hard, the nurses went to intensive care for a while to help with the adults as we all did at various points during the pandemic. We lost, for example, our junior doctors to adult care for a while because they were more recently used to working with adults. So we covered, some of us covered more the paediatric services. It’s been very challenging and there’s been a lot of changes, although we tried to keep running at full capacity via video consultation where possible. Obviously being in a central London hospital we were affected by travel and transport and the lockdown in terms of seeing families and children face-to-face which I found very difficult. I much prefer to meet a family than have a video consultation, especially for the first time. I think for follow up appointments and for some of the therapy videos worked well actually and we’ve all seen a big adaptation for our services and lots of positives from learning to work online, but we have had a backlog and we have had an increase in referrals. So the waiting list times have gone up. We are now back to full staffing levels. We had a few of our clinicians who got quite severe Covid and fortunately have made a full recovery. I think everybody knows the impact and from a wider level everybody within clinical services but also in the wide population within their families and friends know what a terrible time it’s been. We are a resilient species I hope. Many of us are quite resilient and I think hopefully things will slowly go back to normal whatever that means, and we’ll be working hard to try and see as many families and children as we can and also I think looking at more creative ways of working, trying to use more group therapies. Maybe using more video consultations, rapid access clinics]. I mean, this might change. It might change the way we think about neurodevelopmental conditions.
Dr. Seonaid Anderson: And that’s a positive note to you finishing with, but in your paper I just want to quickly dart back to your paper, you mentioned that it will be important that functional and mental health aspects are considered in the likely increase in physical presentations associated with long-Covid in the coming year and I was quite interested in that. I’d like you to sort of explain a bit about what you meant and what that might mean?
Dr. Tammy Hedderly: You know, I wrote the paper jointly with Holan, and, Isobel from Great Ormond Street who are psychiatrists and I think together with the psychologists and the psychiatrists and my own team, Dr Malik and our Psychology Team we’ve all been aware of this complex connection between physical presentations and the influence of the brain and psychology on that, and I think you’ve got a condition here. We know with Covid you get post-inflammatory effects and we don’t know fully and understand the mechanisms behind some of the mental health difficulties we’re seeing with the depression and anxiety. We don’t know if these are direct effects of the virus or how much of the effects are direct effects of the virus and how much are psychological effects with the change in routine. I think it’s too early to say. I think until we understand more about neuro-biology of anxiety and of depression and the role of differences in the immune system and the role of inflammation within the wax and wane of those psychological presentations we won’t understand, but there is a lot of work going on in many labs around the world exploring the link between genetics, neuro-biology of inflammation, infection, direct infection versus post-infectious phenomenon within neuro-psychiatry and movement disorder generally. I mean, the link between movement disorder psychology and psychiatry we started with it’s still to be defined and what we need to do is all work together. Hence the setting up of the clinic in the first place. I think there’s been an awareness that the link between movement conditions, physical conditions, psychology and psychiatry is there, but a long, long time, right back, and our, you know, historical neurologists who were really neurologists and psychiatrists together, and I think that’s where we need to be. We need to be working together, not trying to differentiate and working separately, but working holistically to understand these links.
Dr. Seonaid Anderson: It was absolutely fascinating talking to you, Tammy, and looking and delving in a little bit to this, the phenomenon basically of what’s been happening in terms of tics and tic disorders during the pandemic and also touching on the influence of social media as well, and I hope it’s been helpful for people that have been listening to you. You can follow me on Twitter at seonaidanderson2 or for more details about Tourette syndrome you can visit the ACAMH website at www.acamh.org and you can follow them on social media by searching for ACAMH and also I know that the Evelina TANDeM Clinic has educational resources on their website about tics and Tourette syndrome as well. So that you so much for joining me. It’s been really fascinating. Thanks Tammy.
Dr. Tammy Hedderly: Thank you for your time as well and your work with this group of people.