Dr Amita Jassi & Dr. Gazal Jones talk to freelance journalist Jo Carlowe about Obsessive Compulsive Disorder (OCD), the latest treatments, and the Topic Guide.
Intro: This podcast is brought to you by the Association for Child and Adolescent Mental Health ACAMH for short. You can find more podcasts and other resources on our website www.acamh.org and follow us on social media by searching ACAMH.
Interviewer: Hello and welcome to the in-conversation podcast series for the Association for Child and Adolescent Mental Health or ACAMH for short. I’m Jo Carlowe, a freelance journalist with a specialism in Psychology. Today I’ll be getting an overview on obsessive-compulsive disorder from Dr. Amita Jassi, consultant Child and Adolescent clinical psychologist and from clinical psychologist Dr. Gazal Jones, both of whom work at the National and Specialist OCD/BDD (that stands for body dysmorphic disorder), and Related Disorder Service for children and young people at South London and Maudsley NHS Trust. Amita and Gazal have written an ACAMH topic guide on OCD, along with colleague Professor David Mataix-Cols, consultant clinical psychologist and lead researcher in OCD. Amita, and Gazal, welcome. Can you start by introducing yourselves with some details about your roles?
Dr. Amita Jassi: Hi, I’m Amita Jassi. I’m a consultant clinical psychologist at the clinic and I’ve been in this role since 2006. I’ve worked with this client group for that long. I’m also the lead for the body dysmorphic disorder branch of the service and the research lead for the clinic. In our clinic we develop and deliver individually tailored treatment for young people with OCD and Related Disorders, and we also spend a lot of time in our roles teaching and training both nationally and internationally, as well as engaging in media work to raise awareness and understanding of these conditions and their treatments. In addition to that, with my research hat on, we’ve published several papers in the clinic, and books on this topic, including a book on OCD called ‘Can I Tell you About OCD?’ and we have a treatment manual coming out that covers the treatment that we deliver in the clinic.
Interviewer: Okay great. And what prompted you to specialise in this particular area?
Dr. Amita Jassi: OCD I find absolutely fascinating, so this is a condition I’ve worked with for many years and I’m still struck and surprised by what we see in the clinic; such a heterogeneous disorder and there’s just so many facets to it, but I think what really keeps me going in this job is that there’s really good evidence-based treatments and we see people get better, which is always good in your job, to feel that you’re doing something that’s helpful.
Dr. Amita Jassi: But there’s still scope for understanding the conditions better. There’s still a small percentage that don’t get better that we try to understand and develop further treatments. So I think it’s the combination of being a really interesting condition to work with that has good outcomes and that there’s lots of research to be done.
Interviewer: Right, we’ll look at the research later. Gazal, can you also introduce yourself and say a little bit about how you came to specialise in this area?
Dr. Gazal Jones: Hello. My name is Gazal Jones. I’m a clinical psychologist at the National and Specialist OCD and BBD and Related Disorder Service at the Maudsley Hospital. I provide specialist assessment and evidence-based treatment to children and young people with OCD, working with families across the country. Alongside my clinical work I have been working on a research project as well, which is aimed at improving access to mental health services amongst ethnic minority youth. We know that ethnic minorities are severely under-represented in Child and Adolescent Mental Health Services, so as part of this project we provide assessments and training on OCD within the community. So I do lots of visits to schools and local libraries spreading awareness of OCD, and I was recently also involved in a very exciting project where we developed a video, that’s freely available, on OCD called ‘OCD is Not Me’, and that is developed by parents and young people with lived experience of OCD to raise awareness and make people aware of what treatment’s out there.
Interviewer: All of us have unpleasant thoughts from time to time. Perhaps we fret over whether we locked the door when we left the house, did we turn the oven off, that type of thing, but what differentiates obsessive-compulsive disorder from normal concern, let’s call it?
Dr. Amita Jassi: So OCD is characterised by two main components, obsessions and compulsions. So obsessions are intrusive thoughts, urges, images or doubts that are experiences repetitive and distressing, and that could be such as a fear of dirt or contamination, religious concerns, sexual intrusive thoughts, aggressive intrusive thoughts, and compulsions are also repetitive and ritualistic behaviours that are performed to reduce the distress that these obsessions bring. And again they can include all sorts of things, both mental rituals and physical rituals, like just checking, ordering, washing. As you say, we all experience intrusive thoughts and we all do things, you know we all have habits. I guess the thing with OCD being a disorder is it causes distress and interference. It impacts on people’s lives. It can stop them doing things. So for young people it may delay them getting into school, may affect their concentration. It can affect people in lots of ways, but ultimately what makes it different from what we all experience is that it’s distressing and interfering.
Interviewer: Right, and I’m aware OCD takes many forms, but can you describe some examples of the types of urges and compulsions that are typical, let’s say?
Dr. Gazal Jones: So we would say that OCD looks different for everyone, so that’s really important from the outset, and the kind of urges that you’ve described are linked with the obsessions and compulsions that Amita’s just spoken about. Some common obsessions, these intrusive thoughts, pictures, doubts, urges, might include concerns about dirt or contamination, religious concerns or concerns about maybe offending God. They can be unwanted aggressive or sexual thoughts, or discomfort if things are not symmetrical or even. Some common compulsions might include checking, ordering, cleaning, counting, and redoing things, but I think what’s really important to say is that lots of young people will experience a combination of different obsessions and compulsions, and some of these are more commonly talked about and identified in research as common, but some might be less frequently talked about.
So I suppose obsessions around aggression or sexual obsessions are very common, but young people might struggle to talk about these as openly as perhaps fear of harm coming to a loved one, due to fears of stigma, and we also have to be aware that certain compulsions can be mental compulsions. So that might include behaviours that are not easily observable, like checking a door would be easy to observe, but counting in your mind wouldn’t. But mental compulsions are very, very common in OCD as well.
Interviewer: And how common is OCD in children and young people?
Dr. Amita Jassi: Research evidence suggests between one to three percent of young people will have OCD, so really common and we know that OCD does develop in childhood and adolescence. So particularly we hear in our clinic that around that transition time from primary to secondary school is often a peak time for it to develop. And lots of adults when they go into Adult Services have reflected; about a third of them have looked back and said actually my OCD started when I was a child. So we think it’s really common in young people.
Interviewer: So it may not get identified until much later?
Dr. Amita Jassi: Yes.
Interviewer: The onset might have been quite early.
Dr. Amita Jassi: Definitely, yes.
Interviewer: Can you describe how OCD is assessed and identified?
Dr. Gazal Jones: So to get help for OCD the first step is for young people and parents to discuss their concerns with their GP, so that’s really the first port of call, and the GP then refers onto a Child and Adolescent Mental Health Services, what we commonly refer to as CAMHS, and at CAMHS services you’ll find trained professionals that can diagnose and treat OCD. So OCD is best diagnosed by a trained mental health professional in these services and that’s through interviewing both the child or young person, and their parents. And what clinicians will be doing is following diagnostic criteria for OCD and there’s two main diagnostic tools that we would rely on, and that includes the Diagnostic and Statistical Manual of Mental Disorders. That’s the DSM-5. And then we’ve got the International Classification of Mental and Behavioural Disorders, the ICD-11, the most recent version, and the diagnostic criteria for young people and children to meet to obtain a diagnosis of OCD would involve four key areas.
So one would be the presence of obsessions and or compulsions. The second would be experiencing quite a lot of marked anxiety from obsessions and performing compulsions to reduce that anxiety, which is a very common part of OCD. The third would involve spending a lot of time each day distressed by the obsessions or through performing compulsions. And finally the fourth thing is that having a very significant impact on their life just like Amita was alluding to, just stress and interference with functioning.
So that could be impact on school or friendships or even home life. What we use in our clinic is the children’s Yale-Brown obsessive-compulsive scale, the CY-BOCS for short, and it’s a gold standard clinician administered interview, and that can help assess for the presence of specific symptoms, and symptom severity as well. The CY-BOCS is commonly used in research and specialist services like ours, and should be administered before treatment, after treatment, and follow-up, and can help really see how things are progressing throughout treatment.
Interviewer: Are there barriers to getting treatment for young people?
Dr. Amita Jassi: So typically if a parent does take their child to the GP and explains the disorder and the symptoms, typically they do get referred on to the local mental health services. I think the pathway is in the UK a bit different in that they need to be seen in their local services before they would access specialist care such as ours. But there are barriers I think to young people disclosing and talking about their OCD. So sometimes lots of young people might hide their symptoms due to shame or fear. So if they’re having sexual obsessions that might feel really scary to talk about. Sometimes OCD can play tricks on people and say that if they say the obsession then it might come true, so that can really make it a struggle for people to come forward.
Also the impact of OCD can often be underestimated by the young person, and families often get really involved in routines and rituals, something we call Family Accommodation. So lots of families we see, about 90 per cent, get involved in OCD and that just becomes a way of life. So sometimes the young person and the family just think that’s the way it is and they might not realise the impact it’s having on day-to-day life. So then they may not come forward to mental health services.
Interviewer: So they kind of collude to try and ease the tension and stress?
Dr. Amita Jassi: Yes, and they’re just trying to get through a day and trying to get them to school and trying to get them to bed. So it’s really, really common. And then I think there have been cases that we’ve seen where perhaps some of the obsessions and compulsions people have, so violent and aggressive obsessions, can sometimes be misinterpreted as presenting as real risk. So sometimes young people can go to services and talk about ‘I’m worried I’m going to stab somebody’ or ‘I’m worried I’m a paedophile’ and that gets misinterpreted as real risk rather than what we typically see in OCD is that these thoughts are egodystonic; people don’t like them; they’re distressing; they’re doing lots and lots of measures to prevent that from happening. So, unfortunately, we have seen some young people where they’ve ended up going down social care route or other services have been alerted when actually it’s been OCD.
Interviewer: How do you differentiate between real risk and OCD?
Dr. Amita Jassi: So with OCD these thoughts are experienced as egodystonic. They don’t want them; they’re intrusive; they’re distressing; and they’re engaging in behaviours, such as avoiding or doing compulsions to stop that from coming true. So they’re not actually acting out on those intrusive thoughts. In fact quite the opposite; they’re doing everything they possibly can to actually make sure that this fear doesn’t come true, and it’s the fear rather than actually egosyntonic; they’re not enjoying having these thoughts.
Interviewer: You’ve alluded to the fact that OCD impinges on a young person’s life in many ways. Can you explain how it impinges, both in terms of the social aspects, in terms of education and well-being, and so on?
Dr. Gazal Jones: OCD, like we’ve been talking about it, does have a significant impact both on the child, the young person, but also on others around them and this might include spending lots and lots of time performing compulsions and sometimes these routines can be as lengthy as a full day. It could be up to eight hours and that can leave people feeling extremely exhausted and extremely tired, and prevents them from doing things that they might otherwise enjoy, like spend time with friends or even the family members, and the other impact it might have on young people is that it might create a lot of shame and fears about potentially going mad, not understanding why they’re having some of these intrusive thoughts, not knowing that actually these intrusive thoughts are quite common for everyone but not wanting to speak about them and really worrying about them can leave them, just turn inwards and feel really socially isolated or experience lots of low self-esteem as a result, and on school and academic functioning.
So we see that lots of young people in our service that would be struggling to perform to the level that they’re able to at school because of OCD, and research shows us that approximately 50 per cent of young people would struggle at school because of OCD, and this could be because they might struggle to hand things in on time because compulsions involve maybe writing and rewriting things repetitively, or they might ask questions excessively. So reassurance seeking is a very big part of OCD and so they might constantly be asking for reassurance from teachers or parents when they’re completing their work.
Interviewer: What types of traits could teachers potentially observe in the classroom?
Dr. Gazal Jones: I think schools can detect if it’s like, we were talking about, if it’s compulsions that are noticeable. So if they’re noticing lots of repetitive behaviours, like people having to sit up and down in their chair; that is an observable behaviour that they might link to OCD, but other things like mental compulsions, so if children are struggling to focus in class because they’re cancelling out bad intrusive thoughts, or bad according to OCD intrusive thoughts, in their mind, and then aren’t able to complete a whole piece of work teachers would really struggle to identify that when they’re sitting in a classroom with about 30 students. So those forms of OCD can be tricky and from the teaching that we’ve done in schools I think a lot of the questions that we get asked is their teachers might think that there’s a specific link between the obsession and the compulsion and that’s not necessarily the case with OCD, so someone could have compulsions, sorry, obsessions around something bad happening to their mum and then as a result might wash their hands rather than that being dirt and contamination, and that can be quite confusing for teachers.
Interviewer: Right. Just returning to families, and you have talked a little bit about the impact on the family, but can you say a little bit more? What role do parents and siblings play?
Dr. Gazal Jones: So we know that parents and siblings get very involved in helping with compulsive behaviours or avoidance to OCD triggers, so what we were saying earlier, that’s what we would call Family Accommodation in OCD, so we find that up to 90 per cent of family members, and this is demonstrated through research as well, report that they either participate in the compulsions themselves or help avoidance of the triggers and this could involve, for example, if there’s concerns about contamination or catching illnesses, that they might wash or clean items for their child, and that could include anything from notebooks to backpacks and all kinds of items being used, or they might drive a very long route around an avoided area that might trigger compulsions, so they could be going out of their way for a full hour to get around these kind of triggers of OCD. So what we know is from research is the family accommodation of OCD actually interferes with treatment, although it is a very common response; any parent or sibling would have OCD would want to relieve that distress. It can also lead to poorer treatment outcomes, so a lot of the work being done with OCD needs to involve family members where we are specifically looking at Family Accommodation and supporting families in reducing that.
Interviewer: Right. I want to talk about treatment, but just before then are there any comorbidities associated with OCD?
Dr. Amita Jassi: So OCD comes hand in hand with lots of comorbidities so around 80 per cent of young people who have OCD will also have another disorder. So, for example, in our clinic a third of young people we see have OCD and autism spectrum disorders. So that’s the most common one we see but also other comorbidities we see are tic disorders; depression is really common in OCD, which is unsurprising given the impact OCD can have when you’re missing out on spending time with your friends, or you’re not getting to school, or this family conflict; that does impact on mood. And we see in treatment outcome studies that once OCD is treated mood also lifts. And there’s OCD related disorders. So things like body dysmorphic disorder, trichotillomania, skin picking, hoarding, can often be really commonly associated with OCD.
Interviewer: What about the causes of OCD? What does the research tell us?
Dr. Amita Jassi: Good question. There’s lots of research and not a huge amount of answers, so we don’t know the cause of OCD. We know it’s a combination of individual factors, their genetic biological personality, and environmental factors play a role. So, for example, we know OCD runs in families, or OCD and anxiety disorders run in families, although we see some families where there isn’t a history of that. We know there’s some research that talks about serotonin and the imbalance in serotonin, and that’s why SSRI medications are used, but we know that’s not the cause because medication by itself doesn’t get rid of OCD. Personality factors can play a role, so perfectionism, feeling overly responsible, and environmental factors when people have faced stressful situations; that can often trigger OCD. It doesn’t cause it, but I think if you have the vulnerability factors there then facing something stressful, like I was saying earlier, the transition from primary to secondary school could be a very stressful time. That sometimes might tip people over the edge. I think what I’m really struck by in our clinic is that it’s not one size fits all. The families we see are from different backgrounds, and we know OCD affects all ethnic minorities the same and different cultures. It’s a universal condition and each family is so different but yes, we don’t know the cause but we will keep trying.
Interviewer: All right. Let’s talk about treatment. Where is the first port of call in order to be eligible for treatment? I’m assuming it’s the GP is it?
Dr. Gazal Jones: Yes. absolutely. So the first step is approaching the GP and discussing the concerns, and they can then refer on to the Child and Adolescent Mental Health Services, CAMHS, where it can be diagnosed and treated. If children and young people have had treatment with their local CAMHS service and their symptoms are not improving, or the local service is unable to offer treatment for OCD, families can then request a referral to our clinic, which is a national and specialist OCD service at the Maudsley Hospital.
Interviewer: And once a diagnosis has been made, what are the treatment options?
Dr. Amita Jassi: So the NICE guidelines in the UK and the APA guidelines in the US recommend the psychological treatment, cognitive behaviour therapy, but with the most important component of that inclusion exposure with response prevention, ERP, and this is the most effective treatment, with or without medication, so SSRI medication. The first step is always to try CBT alone, and after a course of CBT if people are still symptomatic then to consider the addition of medication. We find in our clinic and research that between 60 to 80 per cent of young people make significant improvements in symptoms with effective CBT with exposure treatment. We know for treatment to be most beneficial, as Gazal said earlier, it’s really important to include family members and carers in that, given we know how OCD can pull people in, and just thinking about the age appropriateness of that, of how much they are involved. As I said medication is also an added adjunct and can augment exposure therapy, and most typically the medication is only offered if psychological therapy on its own has not been successful. It’s SSRI medication, so selective serotonin reuptake inhibitors that are the recommended medications to use. So, for example, sertraline, fluoxetine are the two that we most commonly use in our clinic.
Interviewer: And can you say a little bit, or maybe give an example, of how ERP exposure and response prevention is used specifically with children and young people, as against with adults?
Dr. Amita Jassi: Yes, so exposure and response prevention is used for both adults and children. The components are the same. So exposure involves facing the trigger of the OCD, so trying to trigger the obsession and the fear, and then, that’s the exposure part, and then the response prevention involves resisting engaging in the compulsion, and what people learn by doing that is that they eventually will habituate to their anxiety. So whilst facing a fear, so for example, if somebody was fearful of knives and thought if they went for a knife they would get hold of it and stab somebody, and that’s what their OCD was saying, the exposure would be being near a knife, and the response prevention would be, if they were doing mental rituals like counting to ten to stop themselves from picking up the knife, to try and resist doing that ritual, and what they’ll learn a few things by doing that actually, so one is as I said that yes, they will get anxious; the anxiety will rise, but it would always come down. So that’s anxiety habituation. They’d have to practice that, both in and out of sessions. So what they learn by doing that is the more they do it the easier it gets; not only that anxiety habituates but that they can tolerate that distress. But also what they learn through doing exposure tasks is something about the obsession, so that person who’s fearful of coming near knives and thinks if they don’t count to ten in their head they will stab somebody will learn that actually they wouldn’t do that and so they get information and evidence against their obsessions by doing exposure with response prevention.
Interviewer: And how do you bring the rest of the family into proceedings?
Dr. Amita Jassi: So what we would do, with exposure and response prevention before you do that you would develop a hierarchy with the young person. So listing what would be the easiest compulsions to resist to the harder ones. They’re using a rating scale because you would start with easy ones to build up their confidence. What we typically do in our clinic is we would ask families to put on the list what they’re having to do for OCD, so if they’re having to support the young person with toileting or having to say reassuring statements to help them, and that would be added to the hierarchy, so the principle would be the same that then we would support the family to when OCD is asking them to do something, for them to resist, and actually we find it’s not just anxiety-provoking for the young person, it’s really anxiety-provoking for families as well because it’s hard for them to watch their children get anxious and they’re fearful on their behalf. But so it’s a process for everybody to experience that anxiety habituating.
Interviewer: One hears a lot about internet CBT. I just wondered if that’s being used a lot with children and young people?
Dr. Amita Jassi: So yes, internet CBT is something that’s coming to the forefront. I think particularly where treatment is really difficult to access. So as a national and specialist service, we’re sitting here in South London, but we see people from all over the country. And so sometimes it’s hard for them to get to us because of OCD, or we go out to them, so there’s practical considerations, so internet CBT is real way forward for people to access really good treatment. Internet CBT varies from self-help programmes to therapist assisted, and we’ve been testing out a therapist assisted treatment here that comes from the Karolinska Institute where Professor Mataix-Cols works, which has been found to be really effective. So this involves people logging in every week and they complete exactly the same treatment that they would get in the clinic and then the therapist logs on to have a look through the worksheets and supports them with coming up with tasks that they can do, so exposure tasks, and evidence suggests in terms of improvement in treatment that people make a good or very good improvement, and they like the treatment and the significant reduction in symptoms that you would find with face-to-face treatment. I think there’s a real… that is definitely the way forward and as I said, we’ve tested it out in this clinic and we hope to be able to come to disseminate that more widely.
Interviewer: Right. I want to ask about outcomes generally, not just internet CBT. How successful are the treatments that you’ve described? What does the research tell us?
Dr. Amita Jassi: So in terms of our face-to-face treatments here and across different sites in the US and Australia, we find about 60 to 80 per cent make a significant reduction on their measures of OCD symptoms and improved functioning, so really good outcomes for treatments. We’ve also tested out things like delivering treatments over the telephone. So Cynthia Turner has done some research on this, who worked here and is now in Australia, again thinking about what’s important in treatment is exposure work and as long as that’s done telephone CBT has been found to be equivalent to coming into the clinic physically, so really good outcomes with CBT, and I think there’s lots of scope in the future to be thinking about how we deliver that, keeping the key ingredients but making it more accessible.
Interviewer: Right. We’ve covered a lot. What else is in the pipeline?
Dr. Gazal Jones: So we’ve got… there’s a little bit of detail on this on the ACAMH page, some interesting research on therapy genetics. And this is a research being carried out at the moment by the National Institute for Health Research. And what they are looking at is the links between genetics and the response to CBT treatment. So they’re collecting DNA samples from the young people with OCD and using quite advanced laboratory techniques and to really determine their genetic makeup, and then see whether there is a link between genetics and treatment response in OCD. So what we’re hoping as an outcome of this research is that we’ll have a better understanding on whether genetic information can help us decide which treatment a young person with OCD would be most likely to benefit from.
Interviewer: Right, that’s really exciting, yes.
Dr. Gazal Jones: And then also in relation to your question about what prompted me to specialise in this area, and I think when I started my clinical training, I didn’t know much about OCD, but we’re really learning about the impact that OCD can have on children and young people, and their families really drew me to this condition, and specifically working in a specialist service where you can provide support and really specialist and very good quality evidence-based treatments for that condition that can help support families in overcoming OCD, and then also being very active in raising awareness of OCD and making people aware of what it means to have OCD and what they can do to seek help and get the right support is something that’s really kept me in this field.
Interviewer: Amita and Gazal, you’ve written an ACAMH topic guide on OCD, we’ve probably covered some of the themes already, but can you say anything more about the contents?
Dr. Amita Jassi: I think the contents just gives a really clear outline of how to identify OCD, the key aspects of assessment and treatment, which I know we’ve covered in this podcast, but it’s there in writing, and I think there are details on there about how to access support for OCD, as well as a list of helpful resources, such as the ‘OCD is Not Me’ video and also voluntary sector support that’s available. So we work really closely with OCD Action that provides lots of support for families, young people, and adults with OCD.
Interviewer: Finally, is there anything you’d like to add that I’ve not asked, perhaps as a take-home message for listeners?
Dr. Gazal Jones: I think we’ve touched on a lot of the things, but we would really like listeners to be left with a couple of take-home messages and these would be that OCD is really common but very treatable with good quality treatment and that includes exposure. We also want to make a point that trivialising OCD can prevent help-seeking so it’s very important that it is taken seriously, and, like we were saying earlier, that early help, getting in there as early as possible and giving the young people and families the right tools to manage OCD, and if you’re struggling with OCD, please speak to your GP and get a referral to CAMHS.
Interviewer: Thank you ever so much both Amita and Gazal. You can find the ACAMH topic guide on OCD on the ACAMH website, www.acamh.org and Twitter @acamh. ACAMH is spelled ACAMH.
Outro: This podcast was brought to you by the Association for Child and Adolescent Mental health, ACAMH for short.