We are delighted to bring you the first in a new series of podcasts that focus 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’ kicks off with Camilla Babbage, PhD researcher in Applied Psychology at the University of Nottingham, giving an overview of the development an App for young people with tics, with the specific aim of improving wellbeing.
You can listen to this podcast directly on our website or on the following platforms; SoundCloud, iTunes, Spotify, CastBox, Deezer, Google Podcasts and Radio.com (not available in the EU).
Camilla is a full-time PhD student at the University of Nottingham. Her research aims to assess the acceptability and effectiveness of a digital technology self-help app program in supporting young people in using behavioural techniques to manage their symptoms and improve their quality of life. The development of the self-help app program will be informed by a literature review and systematic review of current programs and through focus groups with young people with Tourette Syndrome and their carers. The intervention will be implemented and the effectiveness will be measured through post-intervention measurements such as disorder specific outcomes and focus groups to obtain feedback. The project is in collaboration with Tourettes Action and MindTech. She is on Twitter @Teens_Tics_Tech and can be found on LinkedIn.
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 Two ‘‘Education, and Educating, about Tourettes’ – Lucy Toghill ‘In Conversation Tourettes Syndrome’ Ep 2’
- 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’
- Episode Seven ‘Understanding Tic Disorders: A Round Table on Diagnosis, Treatment, and Research’
Transcript
Dr. Seonaid Anderson: Hello. Welcome to the ‘In Conversation’ series for the Association for Child and Adolescent Mental Health or ACAMH for short. I’m Doctor Seonaid Anderson, Chartered Research Psychologist and Neurodiversity Consultant with expertise in Tourette Syndrome. I’m excited to be here today as this is the first in a series of podcasts that ACAMH is hosting on Tourette Syndrome. Over the course of this series we’ll be looking at 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. I’ll be talking to leading players in the field, rising stars of research, clinicians and experts by experience. Today I’m interviewing Camilla Babbage, PhD Researcher in Applied Psychology at the University of Nottingham. Camilla is currently looking into developing an App to support the well-being of children with Tourette Syndrome, specifically using interviews and focus groups with children parents and professionals to understand what features and functions would be most useful.
Camila, welcome. Thank you for joining me today.
Camilla Babbage: Hi Seonaid. Thanks for having me today too.
Dr. Seonaid Anderson: Just to give a brief overview of what Tourette Syndrome or TS is. So it’s a neurological condition that is estimated to affect over 300,000 children and adults in the UK. So that’s one school child in every 100. A prevalence of 1% which is the same as autism. The main symptoms are physical and vocal tics which develop in childhood and tics can be simple, such as eye blinking, sniffing and throat clearing through to complex movements and vocalisations.
For Tourette Syndrome to be diagnosed multiple motor tics and at least one vocal tic must be present for at least 12 months. There is more information about Tourette Syndrome on the ACAMH website with a very useful topic guide and that’s at www.acamh.org/topic/tourettessyndrome
Let’s go to Camilla now. Camilla if you could start by introducing yourself.
Camilla Babbage: Yes. So hi there. I’m currently completing an ESRC and Tourette’s Action Funded PhD looking into developing an App for young people with tics and that App would have the specific aim of improving wellbeing for these young people.
So what we’ve been trying to do is understanding what would be useful in this App and what functions and features should be included, that’s required looking at the previous literature and then having conversations with young people and professionals to see what they think should be included in it.
Dr. Seonaid Anderson: And you mentioned that the research project was 50% funded by Tourette’s Action and Tourette’s action is the leading support charity for people with Tourette Syndrome and their families in England, Wales and Northern Ireland and it’s a great source of resources and the website is www.tourettes-action.org.uk and I was Research Manager there for eight years before becoming a freelance neurodiversity consultant. So Camilla, can you tell us a little bit more about how you became interested in Tourette Syndrome and digital interventions.
Camilla Babbage: I think the thing with this research area for young people with Tourette’s is that there’s a lack of support for these young people and you’ve also got a lot of difficulties in them managing their wellbeing and having as good a quality of life compared to their peers. There’s a lot of literature around how tics are difficult to live with and when you have a lot of anxiety or low mood it’s really difficult with the tics as well because they lead into each other.
So you’ve got this sort of chicken and egg where you have the tics causing anxiety and then the anxiety causing more tics and it’s really difficult to break that circle and then lots of people who have tics and Tourette Syndrome will also have co-occurring conditions. So things like OCD, ADHD that make managing their tics difficult, and then also just managing that condition alone can be really time consuming and require a lot of effort anyway, never mind the tics.
There’s lots of behaviour therapies out there for young people with tics, but frankly they’re not amazing for everyone. Not everyone finds them that useful and then there’s this also added on complication that there is a lack of access to support for a lot of these young people. Not many professionals do you know how to implement some of those behavioural therapies that are available.
So the idea that there could be a self-help intervention that young people can access it could help break that cycle that I was talking about earlier around the anxiety leading to the tics or just worries and concerns increasing tics. If you can manage those better you may also then see improved tic functioning and then hopefully just generalised improved wellbeing as a result of that.
Dr. Seonaid Anderson: That’s really interesting. So really a big link there between anxiety and tics and I would imagine that also at CAMHS Services. So that’s Child and Adolescent Mental Health Services. It would be quite common to see people with anxiety, depression, OCD, ADHD, but they also might have tics along with that, but I guess they would be treating symptoms that are the most troublesome to them, and you mentioned about behavioural therapy. That’s something that’s very interesting. I know that I’ve been very interested in telemedicine in the UK and trying to train more therapists and clinicians to deliver behavioural therapy for tics because I think patients would like some choice in terms of their treatment options and we know that medication can often be offered but sometimes the side effects can be unpleasant and people would just like the option of trying behavioural therapy as well.
I do note that you mentioned it doesn’t work for everybody either. I guess one thing we know about Tourette Syndrome is if you’ve met one person with Tourette Syndrome, you’ve met one person with Tourette Syndrome and it’s such a variable condition from person to person.
Camilla Babbage: I can echo what you’ve just said more actually about how individuals who are experiencing tics may be experiencing tics in a very different way to another individual and whilst social support has been recognised as being really important you can have just different manifestations of how those tics are appearing and also there’s other conditions. Not everyone will go on to get a diagnosis of say OCD or ADHD, but you do see maybe those they’re not quite reaching the threshold but they’re experiencing symptoms of what those other young people seem to experience with a diagnosis.
Dr. Seonaid Anderson: I think that’s again an interesting point. Not meeting perhaps threshold for diagnosis, but some of those patients and their families perhaps would really benefit from some psycho-education around the symptoms that they’re experiencing or tics, etc or their ADHD, but they may not, as you say, make threshold for diagnosis. Also just in regards you mentioned the behavioural therapy and there are European Guidelines on the treatment and management of Tourette syndrome and that’s something that clinicians will find very useful and they’re actually being updated at the moment and hopefully will be ready by the end of 2020. So that’s something that I think a lot of clinicians would find very useful because they may not come across children or adults with tics that often but we have these guidelines in place.
It’s certainly a really interesting crossover area between wellbeing and the digital technology in your project. Do you know of any other Apps specific to Tourette Syndrome? I’ve only ever heard of the BT-Coach which is a Tourette Syndrome specific App that I know of.
Camilla Babbage: So to be honest the only one that I have heard of relating to tics and Tourette’s is the BT-Coach and there are some other Apps that I’ve heard of that can help with things like anxiety. So there’s the University of West England sum-up [s.l. 08:37] which I know is useful for tracking anxiety and giving self-management strategies. However, apart from these things that may be helpful on the side no, I don’t know of anything else. I had thought some other things that might be worth mentioning was like the Tourette’s Podcast by Ben Brown which I know that a lot of people with tics really enjoy listening to and it gives them a real insight into other people’s experiences. Then there are other Apps related to like fidget cubes and mini-games that lots of young people say are really helpful.
Dr. Seonaid Anderson: Completely agree. The Tourette’s podcasts is a fantastic source of information. Hearing from some experts by experience, the patient’s themselves, but also from researchers and clinicians that come on the programme as well. So it really gives a great breadth of knowledge and experience. Turning again to your App can you tell me a bit more about how you conducted this research?
Camilla Babbage: Yeah, absolutely. So there have been lots of different stages to this research and most of it has required me talking to young people with tics and what I found in doing that is, as I mentioned before, young people are quite nervous about talking about their tics. There’s also the, sort of, tic echo-phenomena where you are with someone ticing you might pick up their tics or you’re talking about tics so you can get an increased amount of tics.
So I’ve tried to do lots of things to make young people fell really comfortable whilst talking to me. So this has included developing some animation videos. So usually in research you get given a participant information sheet, and I know that lots of people don’t really read those information sheets. They’re long and boring for young people to read. So I try to turn the process of being involved in the research into a video so it was a bit easier for young people to watch and really understand what they’re doing and why this research is happening.
With the recent pandemic I’ve used online methods for focus groups. That’s bringing groups of young people together and actually this has been really brilliant. In the past I’ve done that in person at support groups, but young people seem a lot more calm when they’re speaking from the comfort of their own home. When you’re doing them in big groups of people, I said about, you know, picking up other people’s tics and stuff. There isn’t that worry when you’re doing it online, and it’s gone a lot more smoothly than I had anticipated.
Then other ways that I’ve tried to sort of break the barrier of being worried about taking part in research is sending out these little videos to young people before they take part and it’ll just be me actually saying for example, “Hi John. It’s lovely to meet you. We’re going to be talking next week, and I heard that you just got a new puppy and I’d love to see your puppy” and say things like that just to create a bit of a relationship between us. It’s not going to be some formal meeting or anything and it’s been brilliant.
I’ve had some lovely feedback from the families and young people haven’t seemed as anxious as I thought they might have been to take part.
Dr. Seonaid Anderson: I am so impressed by your creative attitude to recruiting people into your study and I think it’s a great example to show to other researchers and young researchers perhaps starting off in this field that being creative, not just producing the people which of course is necessary, but using these different mediums of video and making them personalised. I think that must really have increased people’s participation and reduced the dropout rate because they’ve got this personal connection with you.
Camilla Babbage: And I have had a really, really good retention rate and people seem to have got really into doing the research. So I had some people who were involved in every single stage because they enjoyed it so much, and I’m quite a creative person and it made my research less dry [s.l. 12:38] doing it that way. So I’ve really enjoyed it actually and I recommend it for anyone who is fed-up of just writing long forms.
Dr. Seonaid Anderson: I think a nice thing to pick up on I definitely found when working as Research Manager and helping recruit patients and their families into research study that there’s lots of benefits to joining in the research that we can really communicate to potential research participant that, of course, for helping research move forward. They may be helping with new treatments or things that can help people manage their tics and Tourette Syndrome, but also I find that it’s really people’s self-esteem can be altered by being involved in study because if they’ve had their diagnosis some time ago or they haven’t seen a health professional for a while, when a keen, empathic researcher such as yourself comes along and says to them, you know, tell me about your Tourette’s?
Tell me what it’s like day-to-day and you’re really engaged with them I think it makes people’s self-esteem immediately increase. Here’s somebody that’s listening to me. I’m going to be helping other people but it also helps that person in that instance in terms of feeling better about themselves.
Camilla Babbage: Everything you said about that building self-esteem and young people saying I just want to help others it makes doing the research I think rewarding on both sides.
Dr. Seonaid Anderson: Another thing that you said was about tic echoes, I think you called them. I guess we might call them suggestible tics and that’s where when there’s a sort of phenomenon where people with tics or Tourette Syndrome when they get together as in support groups or patients’ event and they might actually pick up tics and quite often I think that makes people feel a bit reticent about going to patients’ meetings or support groups because they think oh I’m going to pick up tics or maybe worse tics than I have just now, but actually we found from feedback that that might be the case for some people.
They may pick up some tics having seen them and they’ve been a bit, you know, open to picking up new tics, but actually that sort of fades away after a few days and the benefit that they’ve got from actually meeting other people with Tourette Syndrome, sort of, outweighs any short-term tics that they might pick up, but it was interesting your point also. Would you say then that’s less likely when people are online, as opposed to face-to-face?
Camilla Babbage: Yes. So I agree with what you’re saying about meeting other people outweighs the risk of picking up the tics. However, I think what’s great about doing things online is that you can turn off your camera. You don’t have to look at the screen and you’ve got a lot more flexibility and control over your environment and I think depending on how you’re feeling that day you might feel that it’s too much for you to leave the house.
That might just be a step too far that day just because your tics are bad and bearing in mind this was done in the middle of a pandemic and that has been very stressful for young people. There are lots of anecdotal reports about an increase in tics recently. I think that control over the environment that you have with doing online videos has been really supportive of stopping those suggestible tics from being picked up.
Dr. Seonaid Anderson: One thing I’ve been seeing on Facebook and Twitter and other sort of online patient communities as well is because of the pandemic and the suggestibility of tics there are some people with vocal tics, such as sniffing and coughing and sneezing and touching their face or rubbing parts of their face. So to having a particularly stressful time at the moment now that lockdown is finished, but when they’re living in a different world along with the coronavirus they’re finding it very difficult to be out in public with these tics, and as you said earlier the relationship with anxiety and it means that they’re already anxious being outside.
They’re aware that they can feel these tics coming and they know that people will be looking at them thinking, you know, what is that person doing? Do they have? Are they sick? Do they have coronavirus, but actually they have these suggestible tics that are very apparent at the moment.
In your research study were you including people with tics and not just those with a Tourette Syndrome diagnosis?
Camilla Babbage: She in the actual research we have just focused on people that have a diagnosis of tic disorder or Tourette Syndrome. I don’t think that that means that people who don’t have a diagnosis wouldn’t be able to access the Apps. So we’ve purely done that to make sure that we are getting the right population, not people that have tics alongside autism as a symptom of another condition, for example.
Also many young people do just have tics as they’re growing up. So that’s just for a research purpose, but with the fact that it can take on average three years to get a diagnosis I think we feel that it’s quite important that other people could access the App who don’t have a diagnosis, who might need to learn a little bit more about what could be going on, and young people even said that they’d quite like their family members or friends to access the App to learn a little bit about tics. So it could even be people without having tics accessing it too.
Dr. Seonaid Anderson: What would you say are the advantages of the App? There’s a few there that you’ve spoken about, but one thing that springs to mind is the tailoring of the experience to the individual. We’ve already said that individuals with Tourette Syndrome are all very different to one another. What advantages come to mind in terms of your App?
Camilla Babbage: Yes. So that tailoring and it has been funny, young people have been so lovely about oh no, I don’t like that idea but someone else might. So you can put it on there anyway and, you know, having enough on this App that would make it flexible to different people with different needs. Whilst at the same time not having too much that it doesn’t really focus on anything at all. So that’s been an interesting topic that we have discussed in thinking about what should and shouldn’t go on that App, but I think a lot of the advantages are around the fact that if you’re finding those behavioural therapists difficult to access, difficult to complete it can work alongside behaviour therapy or it can work instead of if that’s something that’s not really working for you and it can support those people who are waiting to access support and it makes you feel that there’s something out there for you.
But the other aspect that the NHS does have a lot of burdens and struggling with time burdens, financial burdens. So if it is self-help you can access that at home without having to put any more pressure on the NHS.
Dr. Seonaid Anderson: Just moving on a little bit to research in general. It’s clear from previous work that there’s a paucity of research into Tourette Syndrome, especially when compared to other conditions in terms of the amount of research funding, but there are some small groups of researchers around the UK that we know of who are carrying out research into how to improve treatment and management of Tourette Syndrome. For example, the University of Nottingham Research Centre.
Dr. Seonaid Anderson: There’s an organisation called Mind Tech and there are Clinical Centres as well that give diagnosis and treatment to patients but also that carry out research work, such as the National and Specialist Services. There’s the Tics and Neurodevelopmental Movement Services at Great Ormond Street Hospital and also the TANDeM Clinic at Evelina London Children’s Hospital. So maybe, Camilla, you and I can chat a little bit about what current research is going on because you are based in Nottingham can you give us an update of what’s going on there?
Camilla Babbage: Fortunately I used to work opposite Mind Tech. However, obviously now we’re working from home. They were recently completing the ORBIT Trial which was remote online intervention trial that used response prevention therapy through a computer delivery, which is a behavioural therapy that allows you to sit with the premonitory urge that you get before having a tic and tries to make you feel more comfortable sitting with that to alleviate tics and this was a therapist supported intervention where the young person remotely access a therapist through ten weeks of ten modules and that trial was completed last summer and they’re following up to see how effective the intervention has been and hope to have their results in 2021.
Then Bethan from Mind Tech has recently been looking into online support groups for Tourette’s and found that the reason people accesses support groups was usually due to accessibility and the lack of offline support and found that those support groups give informational and emotional support to young people and their families wellbeing.
Then recently Tourette’s Action have funded a wristwatch which I think Seonaid is you might be better placed to give a bit more information about that one.
Dr. Seonaid Anderson: Yes. This was at Nottingham School of Psychology and School of Medicine and the researchers they’re aware of pioneering treatment known as median nerve stimulation which they suggest can significantly reduce tic frequency, the intensity and the urge to tic in people with Tourette Syndrome and the researchers were administering repetitive trains of stimulation, electric stimulation to a person with median nerve which is entered at the wrist.
This was to entrain rhythmic electrical brain activity associated with the suppression of movement. So the results of the study are quite surprising, quite remarkable, especially in those people with the most severe tics and showed that this type of stimulation has a real potential as a treatment benefit for Tourette Syndrome, and it’s still in development, but the suggestion and idea that it could be made into a wearable watch like stimulator that looks like an Apple Watch or a bit better.
Something like that and could be used by the individual outside of the clinic when they need to control their tic. So a kind of self-managing treatment which has a potential to change the lives of thousands of people living with Tourette Syndrome. If we think about people trying to sit exams or go to the cinema or a quiet concert if they had a piece of apparatus like this that could be used in those situations that would be really quite life-changing.
And if people want to read more about this there is a paper in a journal called Current Biology and there is more information on the Tourette’s Action website. Other research groups such as Great Ormond Street Hospital and the TANDeM Clinic at the Evelina Hospital, both of those services they provide assessment and intervention support for children and young people. There’s a multidisciplinary team there with specialist doctors and nurse support and at TANDeM they have been very research active.
They’ve published a systematic review of sleep difficulties in children was tic disorders and TANDeM and Great Ormond Street Hospital are involved in a European Multi-centre tics in children study which explores tic onset and the progression through childhood and adolescence. There’s also researchers looking at the genetics of tic disorders and this is part of a global consortium of where they’ve been showing a genetic overlap of tic disorders with other compulsive disorders, like OCD and ADHD and autism spectrum disorder.
Also the NHI have recently commissioned research looking at the use of stimulant medication for children with ADHD when tics are also present and the aim of this research is to understand whether stimulant or non- stimulant medication is most effective for treating children and young people who are experiencing both ADHD and tics, something we know is which is quite common.
So hopefully this will address the current evidence gap and inform clinician’s decision-making regarding the best choice of ADHD medications. This project is named SATURN and that project will be looking for patients across multiple sites in the UK and the study isn’t yet open but there will be the chance for people to join in and find out more details about the study on Tourette’s Actions website and there are other small research projects going on who are currently looking for a participant and a lot of this is either online or have gone online and there are studies to do with Tourette Syndrome and dietary behaviours, driving experiences, parental surveys of supplements and exclusion diets that their children might have tried, and all these details of research projects that people can read more about are on the Tourette’s Action website.
Another great source of research information about Tourette Syndrome is the annual ESSTS Conference. That’s the European Society for the Study of Tourette syndrome and they really aid to understand the causes and mechanisms of Tourette Syndrome and to understand the prevalence and impact and share best practice and research and increased research collaboration, and one of the major achievements have been the publication of those best practice guidelines I mentioned earlier which should be updated by the end of 2020.
So after having a quick overview of what’s happening research wise the the UK in regards to Tourette Syndrome coming back to your research work, Camilla, by the end of your PhD you expect to have the protocol ready to then go on and develop the App, but then it would require help from developers and funders to take an interest and actually creating the App. Can you tell us a bit more about that?
Camilla Babbage: Basically I’m hoping that my thesis will sort of conclude with a protocol or some guiding principles of how I will recommend that App should look, function and work, and then this will be given back to transaction and from there I suppose that they might try and look for someone to take it on or for a group of researchers to continue looking into it and get some of that funding which is so necessary to be able to turn it into something more tangible.
Dr. Seonaid Anderson: So if anybody is listening we’ll give Camilla’s email address at the end of this and if they have any ideas about creating the App then they can get in touch. Camila, I’m aware that in the App itself there are six component. Can you just do each of these elements that young people with Tourette Syndrome have actually requested to be included in the App.
Camilla Babbage: What happened was we had some interviews of young people and they gave us ideas that they wanted in the App, and then we had similar interviews with professionals and they suggest some ideas and then we brought them back together and took them to groups of young people and ended up with these six features which includes schedules, reminders, socialising, coping, calming and psycho-education. The very broad categories of what could be included and there are things like schedules and reminders to help young people plan their day and remember what they’re doing in their day and some of this was around remembering to do their medication, but also just thinking about what’s going on in the week and lots of young people talked about difficulties with functioning day-to-day and it would help them with that.
Then socialising as we’ve said it’s massive that young people get to see other young people with tics and that’s a very normalising experience for them. Then coping strategies and these are very much what professionals suggested would be useful. So you’ve got your CBT strategies for anxiety. Then you’ve got things like self-esteem boosting strategies and then calming ideas.
So young people talked a lot about games that they play that help to calm them down or puzzles, music games, art games things like that that really helped to relieve stress and put them at ease, and then psycho-education which obviously is really important. It Goes across lots of the guidelines and within lots of the behavioural therapist already out there that psycho-education is really important for young people to learn about their condition and what might be happening.
Then we’ve taken these ideas back to young people and asked them how they want them to look and how they want those ideas to function to see what’s the most important. Should we include every type of game under the sun or just really important games for calming.
Dr. Seonaid Anderson: That sounds good. You’ve mentioned calming and that always makes me think of mindfulness and control over anxiety and I find it a really interesting area of work.
I helped with a group of colleagues create a guided mindful relaxation designed specifically for people with Tourette Syndrome. You know, it’s a challenge for people with movement disorders, but it still can be beneficial and we developed a recording specifically designed for helping tolerate the urge to tic and reduce stress and we found that 76% of people who tried the guided relaxation and completed the feedback survey would recommend it to someone else to help with tic symptoms and they really felt a decrease in the intensity of their tics. So it would be nice to have a larger trial at some point to evaluate that intervention and make an adapted version for children as well.
Again the relaxation is available on the Tourette Action website and can be accessed through their shop page. So Camilla how would you envisage the App working once it’s developed, for example, in clinical practice and how would you measure how successful it is?
Camilla Babbage: So this is one of the questions that I actually asked professionals. You know, how would you see it working and they gave lots of different answers to that and I don’t think this question can really be answered until there is something available that professionals can look at and say this is how it should work, but there was the idea that you could use it within therapy, with someone who is working alongside you or as a, sort of, homework task after where people could send children off and say I want you to do this over the next week until I see you next, but then also just having it if you’re on a waiting list and that might be something that you’re signposted to because you’re currently not accessing anything.
In terms of knowing how successful the app is the main idea of this App would be to improve wellbeing and I think that’ll be measured likely through quality of life. However, going back to that tic cycle with the anxiety and the stress then you may also see that as a young person learns how to better manage how they feel and better manage their wellbeing you may then see a reduction in their tics as a result of that.
So it could be that it improves on tic functioning as well as improving wellbeing and quality of life.
Dr. Seonaid Anderson: We’re coming to the end of our conversation now, but what would be your take away message for those people listening to this?
Camilla Babbage: The main thing that I would say to people listening is about when I first started this research project I had all of these ideas for the App that I thought would be brilliant, and as I said like I’m quite creative. So yeah, I went off on a bit of a tangent and then I actually spoke to young people and really tried to get rid of all of the ideas that I’d come to the research with and find out what they wanted and I’ve applied a person- based approach to my research to make sure that it is led and guided by young people, and I’ve really loved being so involved in the community. Everyone has been really accepting of me coming along and talking about my research, and I’m really grateful for doing that because it’s given me a different angle. I’ve learned a lot about young people from a research point of view, but I’ve also learned a lot about just the day-to-day lives of young people who have tics and their family by going along to these roots. Oh, yeah. I think it’s really important to make sure you are not going in with your own opinions, but making sure they are completely guided by what those people who will be impacted by the intervention have said.
Dr. Seonaid Anderson: Brilliant. Really interesting this crossover between the health tech and healthcare we know is so important. So thank you ever so much Camilla. It’s been really fascinating talking to you.
Dr. Seonaid Anderson: You can follow Camilla on Twitter at the handle @Teens_Tics_Tech and her email is camilla.babbage1@nottingham.ac.uk. You can follow me Seonaid Sanderson on Twitter @Seonaidanderso2 and you can email me at contact@muriel-diverse.org and if anyone listening wants more information about Tourette Syndrome they look at the ACAMH website. That’s ACAMH and they can find more information there about a variety of topics including the Tourette Syndrome topic guides and podcast.
