This session we are discussing complex PTSD, with the focus on Dr. Rachel Hiller’s JCPP open access paper ‘A longitudinal study of cognitive predictors of (complex) post‐traumatic stress in young people in out‐of‐home care’ first published 20 March 2020.
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Slides from the session
To get the most from the session we suggest reading/watching the following resources;
- Mental Elf blog, a 2 min read
- Our Research Digest of the paper, a 2 min read
- Dr. Rachel Hiller’s 8 min video abstract of the paper
- The full open access paper doi.org/10.1111/jcpp.13232
Scotland’s Independent Care Review ‘The Promise’
About the session
A panel, comprising Dr. Rachel Hiller, Professor Helen Minnis, and a young person, discussed the research and its implications. This discussion was be facilitated by Andre Tomlin (@Mental_Elf).
Andre Tomlin – Welcome to the webinar, welcome to Camp Fire. It’s really great to have such a big audience. We’re really excited about this session on Predicting Complex PTSD in Foster Care. We have got a brilliant panel. I always say that. But today we really have got a brilliant panel. We’ve got Dr. Rachel Hiller, a clinical research psychologist based at the University of Bath. Rachel’s work focuses on childhood trauma and mental health and support, especially in young children and children in care. Welcome, Rachel. We also have Helen. Helen is Professor of Child and Adolescent Psychiatry at the University of Glasgow. Professor Helen Minnis, and her work focuses on attachment disorder, the clinical aspects, assessment tools, behavioural genetics. She’s currently involved in an RCT of an infant mental health service for young children in foster care. We have Aisha, who is a campaigns adviser. Hi, Aisha. Thanks for joining us. Lovely to see you. Campaigns advisor with NYAS, that’s the National Youth Advocacy Service. Aisha has lived experience of being in foster care. So a brilliant panel, I’m sure you’ll agree. I’m going to ask them all to introduce themselves and to answer some questions in a second. But, before we do, we want to find out a bit about who we’ve got in the webinar. So we’ve got a poll, so please just tell us which of these best matches you and your involvement in this webinar. I hope that there’s a category there that fits who you are. There’s an “other” at the bottom if there isn’t. It’s really helpful for us to get a sense of who we’ve got here. Thanks everyone for saying hello in the chat. Do please carry on doing that if you haven’t so far, introduce yourself, and if you’re talking in the chat, please remember to choose the panellists and attendees drop-down so what you post can be seen by everybody.
So hopefully we’ll have a result for this poll in a second. Okay, wow, what a mix. That’s great. So it looks like the biggest group is “other”. So that’s nice. We’ve got a nice mix. We’ve got a fair few clinical psychologists, but also some other clinicians, researchers, practitioners, people from social care, from schools, lots of students, trainees, researchers. That’s great. Really nice. Thanks for joining us, everyone.
So we will try and keep the conversation flowing. If you’ve got questions or comments, please do post them in the chat or in the Q&A. And as always, with these campfires, we try and do three things. We try and kind of talk about the subject broadly and introduce you to the subject. And so we’re going to do that in a second. Then we’re going to look at a piece of research. So Rachel published a paper fairly recently, and we’re going to look at that paper in a bit of detail and we’re going to critically appraise it. Douglas is going to talk a bit about that.
I should say the people in my team who I’m working with, alongside Matt, we’ve got my colleague Douglas. Douglas Badenoch, who’s an information scientist and fellow elf who’s going to be talking in a minute. We’ve also got Dr. Steph Lewis, who’s a clinical lecturer in child and adolescent psychiatry, and she also has a special interest in childhood trauma and mental health. Steph is going to be on the chat this evening, so you may well see comments from her fairly soon.
And then at the end of the webinar, we’re going to try and think, you know, so what? Now that we’ve looked at this research, now that we’ve discussed this subject, what are we going to do about it? What impact should this research and this conversation have on our practise or on future research? So hopefully we can make the next hour or so really relevant and really interesting for you all. I’m going to start off by asking Rachel, before we look at your paper, Rachel, just tell us why foster care and PTSD is an important conversation to be having in the first place.
Dr. Rachel Hillier – Yeah, I’m trying not to get distracted by the chat and everyone introducing themselves, but it’s so lovely and I saw also there’s some foster carers on the call too and there wasn’t an option for you, but I wanted to say welcome. I’m so pleased to have foster carers on the call here and hear what you think about this research. So, well, in terms of why I think PTSD is important in this group, is just fundamentally because, unfortunately, we know that young people that enter our care system have often experienced various types of trauma. In a very kind of simple, not to simplify it too much, but PTSD, post-traumatic stress disorder, is a trauma-specific mental health outcome. So when we’ve got a group that we know have all experienced trauma and often that has happened before they come into care. We know, for example, that adolescents are our fastest growing age group coming into care at the moment. So often these experiences have happened over many years. Sometimes those experiences can happen whilst they’re in care as well. So PTSD is a mental health difficulty that we think should be routinely screened in this group. But also, I think really importantly is that we have treatments for it. So it’s not a diagnosis that has to go nowhere. If a young person has PTSD, we have treatments available to help them overcome that.
Andre Tomlin – Can you just give us a bit of a definition, Rachel, particularly for those of us who aren’t that familiar with PTSD? What the difference is between PTSD and complex PTSD, which is, I guess, what the focus is of the paper and the discussion this evening.
Dr. Rachel Hiller – Yeah. So the paper looks at both predictors of PTSD and predictors of the complex features of a new diagnosis called complex PTSD. The language is I mean, I hope we’ll talk about this a bit later, because I think there’s pros and cons to all this different language that flies around here. Lots of people talk about developmental trauma, for example, but PTSD is a mental health difficulty that is defined in our diagnostic manuals, and the cluster of symptoms include re-experiencing symptoms and that’s things like nightmares or intrusive memories or flashbacks, so having memories of what happened really pop into your head when you don’t expect it, and feeling like you’re in danger again, for example. Another core symptom is avoidance. So avoiding talking about it, avoiding thinking about, avoiding places that might remind you of what happened. Then we have hyperarousal, which is probably the symptom most easy to see if you’re a carer, for example. And that’s things like being very jumpy, very easily startled, also difficulty sleeping, difficulty concentrating, those kinds of things.
And then finally, we have negative cognitions and mood, like low mood, for example. So, in 2018, one of our diagnostic manuals introduced a category called Complex PTSD, and that was really introduced because I guess there was a lot of discussion academically, but also clinically, that when people had gone through more complex trauma like child maltreatment, for example, like abuse or neglect, their symptom presentation maybe wasn’t adequately covered just by PTSD. But what I think is really important to know about complex PTSD is that fundamentally it’s still PTSD. And I think as clinicians and even academics as well, we really need to hold on to that. So if you’ve got complex PTSD, you still meet criteria for PTSD. So the treatment pathways are the same at the moment, though I’m sure there’ll be a lot of research on this over the next few years. But the complex features are what’s called interpersonal difficulties, relationship difficulties, emotion dysregulation. So, for example, when you get angry, taking a long time to calm back down, and then negative self concept, which might be things like, “I don’t feel like I’m worth anything.” So that’s the cluster of complex features that come under this umbrella of complex PTSD.
Andre Tomlin – Great. Thank you. That’s really helpful. OK, so, Aisha, it’s time to welcome Aisha to our event. It’s really lovely to have you here. Thanks so much for joining us. I know you’re a bit nervous. I’m a bit nervous as well. I always get nervous when I talk in these sorts of things. It’s weird, isn’t it? But it’s a lovely place we’ve got here with some lovely people. So please stay calm and safe. I wanted to just start by asking you to tell us what you think of this topic and why is this an important topic?
Aisha – When I first read the research, I thought it was so eye-opening, even for me, just personally.
Andre Tomlin – Oh, I think you’ve been accidentally muted.
Aisha – Sorry. Finding out that young people in care are 12 times more likely to develop PTSD was quite shocking. And I think it’s important for a study like this to be out there and open to young people and those working with these young people, because a lot of the time we don’t understand where these triggers and symptoms come from. And it’s very good to associate the cause to the effect. I think one of the symptoms that Rachel mentions are unhelpful thoughts, and that is something that happens a lot where young people blame themselves and they start developing these false ideas or false realities of why they are going through symptoms that could be treated and could be supported by the right people and through the right way. I think it’s very important that those working with young people are able to understand that it isn’t just a young person that is reacting or that has anger problems or that is suffering from anxiety because I feel like a lot of the time there are misdiagnosis involved when dealing with trauma experienced young people. So I thought it was very eye opening and it definitely helps in understanding what you are going through as a young person coming from that background.
Andre Tomlin – Thank you. That’s great. I’m going to come on to Helen now and just get a bit more background for us. Helen Minnis, she’s a psychiatrist and a researcher. So from that background, Helen, tell us why you have especially been drawn to working in this field.
Prof Helen Minnis – That’s such a good question. I think, I mean, I ended up in some ways working in this field because I had a travel blog and I ended up working in an orphanage in Guatemala. And I met lots of people who had had very difficult early experiences. I suppose I was always interested in why young people who’ve had these kinds of experiences often struggle so hard to actually get help. For me I think PTSD is a particularly interesting thing to focus on when it comes to young people in the care system because of that symptom that Rachel was talking about, which is avoidance, because, for me, it’s a bit like if you’ve got a sensitive tooth and, you know, it’s going to get worse if you drink something cold or you go out in the cold. The last thing you want to do is to actually set it off. The thing about PTSD, I think, is the last thing you want is to think about those thoughts, but of course that’s what you need to do if you’re going to get help. And that is why I think it’s incredibly important the work that Rachel has done just trying to understand. This PTSD is like all PTSD and it should be treated the same way because, you know, many young people just don’t even want to think about it. So they need confident support. So that’s why I think this is just such an important area to focus on really.
Andre Tomlin – I’ve noticed, working on the mental health in the last five years or so, there’s been a real shift in who within the mental health field, I’m thinking about all the different people who work in mental health, who is genuinely interested in adverse childhood experiences and trauma. It used to be quite a small silo of people that were interested in that. But now it’s literally everyone because we’re kind of recognising as a society the links between early life experiences and trauma and mental illness, which obviously are fairly obvious fundamental things, but it seems to be that that’s really become a part of our sort of general social understanding. Do you think that’s true or am I in a bubble that is unrealistically naive?
Prof Helen Minnis – I think that’s very true, and I think it’s got positive and negative sides because, you know, I think the most important thing to realise is that children and young people who are in the care system are as different from one another as are children and young people who are not in the care system. They’re as likely to have the same range of problems. They’re probably at higher risk because of having had more difficult experiences, but, you know, I think you’ve just got to be so careful that this idea of trauma is not a blunt instrument. We really need to be very, very critical about it and think carefully. That’s why I was just so delighted to see the work that Rachel and her team have done because it takes such a critical look at this.
Andre Tomlin – Do you want to come in, Aisha? Do you have something to add?
Aisha – I just wanted to say I definitely agree with Helen in terms of, although avoidance is one of the biggest things, I think having a study like this open to young people and those who are working with young people, will really help young people understand the reason why it is to face their demons. And so by understanding where it is coming from, it’s going to create this open bracket of conversation, talking about their trauma, talking about their feelings, and hopefully those working with these young people can support them and get them the right support. I think one thing that was very important that she mentioned is that young people in care are no different to other young people. Yes, they may have had traumatic experiences, but a lot of the times professionals fit them into this bracket of, “Oh, you are so special. What you have is ridiculously traumatic and you’re going through so much,” and they make the trauma, it’s sad to say exaggerated, in the terms where it makes young people scared to even speak about their experiences. It makes them feel like, “Oh my gosh, am I the only person that’s been through this?” and when, to be honest, like the results kind of show, it’s more the meaning of the trauma that affects the young person. I think that’s why it’s very important to take an individualistic approach, as you would with any other young person.
Andre Tomlin – Thank you. Rachel, just say something for a couple of minutes, just to round off this introductory bit for us.
Dr. Rachel Hiller – I mean, I feel like Helen and Aisha have just summarised that so lovely that not more needs to be said. But the one thing that I think we’re all consistently saying and it also leads to as well, which we might come back to later, is it’s also not always… I love that Helen said that young people in care are as different between each other as all young people. And, you know, I wish we would more have language where we think of them as young people first and the fact that they are in care I don’t want to minimise that because, of course, that’s important. But it shouldn’t be a blanket reason for decision making. And part of that in a trauma and adversity context as well is also kind of linking to what you were saying, Aisha, is not always presuming that you know what trauma it is that might be leading to their mental health difficulties. But just because you think something was really bad and it may objectively be bad, doesn’t mean that’s what’s on the young person’s mind and what needs addressing. So I think what we’re all trying to say is let’s go into this with a bit more of an open mind and thinking about what the young people need.
Andre Tomlin – Fabulous. Thank you. All right, so we’ve got a brilliant conversation going on in the chat, as always, please do join in with that and contribute to that. That’s fabulous and that’s ongoing. It’s time for the science-y bit now. So here comes Douglas. He’s got some slides and some some science-y stuff to say about Rachel’s research. So we’re going to teach you some stuff here about research and methods and why this is an interesting paper, but also what its strengths and limitations are. Then we’re going to talk a bit later on about what we’re going to do as a result of this research existing. So, yeah, Douglas, over to you.
Douglas Badenoch – Thank you, Andre, and thank you panellists for our brilliant introduction and thank you to the participants, you’re already posting really interesting comments and questions, which I’ve been trying to read, some about methods and some about the context. It seems like there’s a lot of folk who are coming up against these issues in so many different contexts, sectors: education, justice system, and care. I think that underlines the task at hand to try and improve all of our understanding of what’s going on here.
Matt, would you mind throwing up slide number one, please? Thanks very much. So when I sit down to critically appraise any paper, I guess there are three things that I’m looking for. First of all, what’s the question that is being addressed by this study? Secondly, are the methods valid? And thirdly, are the results important? That’s kind of my sort of three-step boiling the whole process down, and that’s the process I applied to this study.
If you want to jump into presentation mode Matt, I’m getting the slide deck here, and then jump back to slide two once you’ve done that. Now, with this cohort study, there are some challenges and I don’t pretend to pick up all the nuances here, but what I’ve tried to do is to pick up the broad brush issues that arise from cohort studies. I guess we’ve done two things in this study, we’ve captured people at a moment in time and looked at an array of data about their PTSD symptoms and their trauma experience, and then followed up 12 months later to find out whether they’ve changed and what the relationships are between all of those data points.
So I tried to boil this down into one research question which other research questions may be formulated. But I broadly see this as being focussing on young people in mostly foster care, but their out-of-home care. What is the relationship between the cognitive processes that they experience, their PTSD symptoms, and their complex PTSD symptoms? So the researchers are trying to look at how we understand it, as well as what the symptoms actually are. That kind of makes it a complicated study to read.
But let’s let’s skip on. So with that in mind, we looked at what the researchers did. So we got participants from three local authorities in England, and for the participants who agreed to take part, the researchers looked at their history of trauma and their experience of maltreatment. They looked at their PTSD symptoms, including complex PTSD elements, and they assessed the sort of three main domains of cognitive process that underpin the psychological theories here. And those we’ve already heard some quite good examples of those, talking about memories and how memories affect you.
What are the coping strategies that people employ to be able to deal with their trauma and the maladaptive appraisals? So there’s some cognitive processes that people go through which end up with them making inaccurate assessments or overly negative assessments of what’s going on. So this for me is one of the most interesting aspects of this study, is looking at these processes and how they correlate with the symptoms. As we can see, the groups were followed up after a year.
So we’ve got a basic idea of what this study was about. Thank you, Matt. Delving into the details in a bit more detail. What I did was I pulled out the CASP, Critical Appraisal checklist for our cohort study and ran through the questions, looking for answers to these sort of checklist items. And as you can see, it’s mostly greens, which is always reassuring. But there are some important limitations and some issues that I think it might be worth talking about or hearing from the research team about.
The first question I had was about how the sample was recruited. We have heard that about half of the participants who were eligible to participate declined for one reason or another. We’ll maybe hear a little bit more about that in a minute. The other thing I think always with an observational study you have in the back of the mind, you can’t eliminate all the possible factors. You can’t identify all possible factors. So there could be confounding things that affect the relationships that we find that we haven’t thought about. It can be difficult to prove the directionality of causation, and that’s the kind of issue that’s important with this sort of condition, I feel, in that one’s experience of the symptoms affects how one thinks about them. And so that relationship, I think, is something we will maybe hear a little bit more about later on as well.
The last point I think would be worth talking about is the applicability of the results. This is question 10 and I noticed one of the comments in the sidebar. Someone was saying that we excluded people with existing developmental difficulties from the study. So that’s the sort of thing that makes you think, “Well, does this apply to my population or what section of my population?” So that’s the kind of discussion I think we can go on to have. But one thing I would say before we skip on is critical appraisal of studies isn’t about just picking holes. It’s about identifying strengths and perhaps limitations. I think what we can see is that particularly with, you know, if we’re giving a lot of measurement tools and batteries of interviews and questionnaires with people, that might affect the response we get, the amount of data we get, and the quality of data we get.
So I wonder, is it worth pausing just to pass over to Rachel? I wondered if you would mind just talking a little bit more about the sampling and recruitment and, you know, just take us through how that worked so that we can get a broader picture than what we could get in the paper.
Dr. Rachel Hiller – Yeah, so I think one of the really tricky things to balance with research like this, as it is whenever you’re researching humans, but particularly when you’re researching with young people and not just a broad population of young people, but young people that are used to professionals coming and going and making them do forms and not knowing what the forms are for, and are very savvy to the way adults can be, to be perfectly honest. You’ve got to balance basically just feasibility considerations, so the confounds, I think, are really important and the inclusion and exclusion criteria are really important.
We didn’t exclude all young people with developmental disabilities, but what we essentially said, and we also didn’t assess young people for developmental disabilities, and we also didn’t assess IQ, for example, because we just didn’t have capacity within the study to be doing that. That takes a substantial amount more time, but it’s certainly worth considering. What we did, what young people were excluded from the study was if an intellectual disability or a developmental disability was at a severity where they struggle to manage a mainstream curriculum, which is an incredibly crude marker, obviously, I would absolutely say that. But that is fundamentally because it’s a questionnaire study. So they’re having to sit there and go through quite in-depth questionnaires. And, you know, that’s absolutely a limitation.
In terms of how we recruited these young people, because that in itself was quite a process, because our local authorities were actually really amazing coming on board with this, because when you first go out to a local authority and you say to them, “I want to ask your young people how they feel about their trauma,” you might imagine that the initial response is “absolutely not”. So it took a lot of trust and a lot of working together on why we wanted to do this research and talking to young people about what they felt about this research. So, you know, we really tried to co-develop our work with care-experienced young people when we’re putting together these projects.
So we had three local authorities that were involved in this. The main places we worked with were Bristol and Swindon local authorities, who had some really wonderful people that really championed this research. Essentially, we went to their teams and tried our best to consent in a systematic way where we went team by team and got all of their eligible young people consented for the study. We did that because what you want to avoid in studies like this is only getting sent young people that are doing really well. So we don’t mind if you ask them about their mental health, or only getting young people that are doing really poorly because they’re going to be doing symptom screeners and you might be able to tell us something about their mental health, because both of those extremes are difficult to manage and also not necessarily appropriate in a research context.
So we were really lucky that the services came on board and let us do more systematic recruitment. But ultimately, young people will decide whether they want to be in studies or not, which means we always have selection bias as a limitation in our work, that’s an unavoidable part of this kind of research because young people have to decline participation. If I had 100% of young people saying, yes, they want to do the study, you’d be feeling pretty concerned about what was going on behind the scenes because it’s not a natural trajectory for studies. Douglas, did you have any specific questions about that that you want me to cover? I can’t keep track of the chat.
Douglas Badenoch – No, that’s fine. I’ve been trying to keep an eye on it myself, so I’m sure that was a brilliant answer. Thank you. I think that was really helpful and it underlines that this is obviously one of the challenges in doing research in this area is that it’s hard to do research in this area.
Dr. Rachel Hiller – Yeah, and I guess what we want, what the social workers and local authority managers really had to come on board with, which they were wonderful about, because it’s a different way of working when you’re doing research projects. But is that we want young people to be ultimately deciding whether they want to be in research or not, if they want their voice heard in research, we want them to have that opportunity. So we just don’t want at a professional level to be presuming kids don’t want to be in it or blocking them because we’ve decided that they can’t talk about their mental health when actually maybe that would be something they would like to do. Our local authorities, I must say, were really wonderful in allowing us to do that.
Douglas Badenoch – Well, I’m sure that was down to the hard work that you put in establishing those relationships, and I think just to underline that discussion before we move forward, I think the other thing to say, all EBM gurus used to say to me that, you know, you’re unlikely to find a paper that’s got exactly the population that is exactly the same as the person in front of you. And, because this is such an individual thing, it might be more appropriate to ask, is this so different that the result, how different would people have to be that this study can’t help us? And I think taking that kind of more positive twist on it is appropriate here for those reasons.
Matt, could you just please jump on? Jump back to the slides for me. I’ve got a summary slide of some of the points, the next slide. Yeah, this one. Thank you. There’s a slide there just summarising some of the points raised so far. A lot of these points we’ve acknowledged in the published study, and one of the things we discussed in our pre-meeting was that the follow-up rate was very high by the usual standards of this kind of research. That’s something we can pick up later if we’ve got time. But an important point here is this last one, that this study is broadly consistent with what we would expect from similar studies. So there’s nothing, kind of, necessarily frightening about these findings. Could you jump on, please, one slide.
So if we feel that we’re fairly happy with the methods, when we look at the findings of the paper, there’s a lot of information that we could go through. This is both the benefit and the harm, if you like, of doing these sort of regression analyses. We’ve got a lot of variables that are correlating with one another. But one of the key findings that certainly struck me was the strength of the association between these cognitive processes and the symptoms, both of PTSD and the complex PTSD symptoms. There was also a strong correlation between PTSD and complex PTSD. But it seems like, this suggests to me there’s a lot of potential for what we can do with these folk by targeting the cognitive processes that we already have treatments for.
So I just wanted to pause at that point, that seems to be the important time to come back to the group. I wonder if you could start us off, Helen, just by thinking about those findings, I’ll give you a moment, I can see you were tracking the comments. They are doing sterling work. What’s your take on the key take-home finding from the paper?
Prof Helen Minnis – Yeah, I mean, even before getting into that, Douglas, I just wanted to say I have done research with looked-after young people and I just want to say the number of hoops that you need to jump through to make sure that you’re doing it properly is enormous. And to see an 80% retention rate just shows that Rachel and her team did this really well. I mean, I just wanted to applaud because it’s such well-conducted research, it’s really, really tricky to do really good research. So, for me, what I thought was really important about this study was that, you know, the big question, as you described, Douglas, was that it was about mechanisms and the mechanisms for this group of children and young people… For the wider population of children and young people with PTSD. And I think that really the resounding answer was yes. And that’s really good news, because it means we don’t have to reinvent things for this group of young people. It means we’ve got good evidence of these treatments, there are NICE guidelines. And so it goes back to that thing i was saying at the beginning where, as a clinician you want lots of confident support.
So I think, from that point of view, this paper is really important because it really suggests that if a young person in the care system has PTSD, treatment for PTSD, and it doesn’t have to have whistles and bells. There’s also lots of questions in the chat about other new developmental problems, learning disabilities. And, you know, what I think was a really important point made by Rachel and her colleagues in the paper was that this is a group where there are often overlapping problems. And so you made that point. But if you had tried to look at all of these problems in one paper, we would have ended up confused. So it was really helpful to have this very clear focus on PTSD, partly because it’s so often missed. And I think, for me, this paper gives me confidence as a clinician that why should this be any different if the young person has a different ethnicity than most of the kids in this sample, or has a learning disability? If it’s PTSD, it’s PTSD.
Douglas Badenoch – Yeah, that’s a brilliant point, I mean, I think that was my feeling about it was it looks like there are targets to treat whatever we call it, and whatever the interactions might be going on, maybe the issue is not so much how you define them and categorise them as making sure you identify people who can benefit from… There’s obviously I mean, again, looking at the chat, there’s obviously a lot of unrecognised difficulties going on. Does this mean that what we need to be doing is identifying who can benefit from those treatments better?
Prof Helen Minnis – I think one of the worries that we’ve been discussing about about the term “complex PTSD” is that it might blind you to thinking that all of the young person’s problems are some form of PTSD and that you can kind of cram everything into that box. And I think you were very careful in the paper not to say that, you know, this is a paper about PTSD, but children or young people may also have other problems. They may also have ADHD or foetal-alcohol spectrum disorder, or autism, and we need to be looking for all of those problems. But if we find PTSD, they can be treated for PTSD like everyone else.
Dr. Rachel Hiller – Yeah, Helen, I think that you’ve really hit the nail on the head there. And, again, what sometimes can get lost when we’re talking about young people in care is that there are often a lot of different comorbidities to manage. But the same is also true for almost all groups with PTSD. We have treatments for PTSD. We have really quite good treatments, actually, for PTSD. I don’t think anyone’s going to sit here and say trauma-focussed cognitive behaviour therapy will work 100 percent of the time for every person that you see, of course that’s just not the reality of how things work. But we want to be going at least from a baseline where, very simply put, if a young person has PTSD, we’re trying our best-evidenced treatments with them, and not getting lost in the noise, basically. Not getting lost in the complexity of it, but just getting to the heart of it.
Douglas Badenoch – been referring to into the pack that goes with the package on the event on the website, but I thought that would be a good point to broaden the discussion. Aisha, I’d like to bring you in to to get your reflections on the direction we’ve been taking this discussion. How does that fit in with your views?
Aisha – I’m so sorry, say that again.
Douglas Badenoch – I wanted to bring you in to give us your thoughts on what we’re saying about the existing approaches, the existing treatment approaches may already exist, that we can offer people.
Aisha – I think it’s very important to highlight that, because a lot of the time when dealing with any sort of young person with trauma-experienced background, there’s always a sort of stigma or stereotype associated with children in care, in particular of they’re struggling, there’s too much of what they’ve gone on, they don’t know what’s wrong, but who best knows of their experience than the person who has experienced it? And I think there needs to be an open mind given to all young people in terms of leading the conversations about their trauma, leading the conversations about their experiences. So professionals are able to really learn about that young person and what their experience means to them. I think, of course, it’s great to highlight all the issues that there might be with the study in terms of representing certain people, young people, or backgrounds, ethnic backgrounds. However, I do feel like it’s a great start in showing that there are already treatments available, that professionals have a guideline and, of course, I think it isn’t a one size fits all, and I think what’s also important is identifying what that experience means to that young person. The young person, for example, who’s been through physical abuse, sexual abuse, may have had a lot of things going on, but it could be verbal abuse that they’re holding on to, that they’re having flashbacks about nightmares, about things that really hit home to them. Those are things that a lot of the time you cannot guess or you cannot see straight away from a young person. I think, from my own personal experience, avoidance was my biggest thing in terms of pretending like it wasn’t there and pretending like I just needed to get through the day, even if I got triggered. And it took me a long time to understand what triggers are, and to understand how to cope with triggers and how to ask for help and where to ask for help.
I think a lot of the time young people don’t even know what PTSD is. You know, young people are often fit into a background of, “Yeah, it’s just because they’re in care, they’ve been moved around a lot. That’s exactly what it is, instability.” Of course, all these things have an impact. But again, imagine carrying all the baggage of your experience as well as the instability, you know, as well as the lack of support and trust in people. I think what is also important that Rachel mentioned is the fact that young people in care with traumatic backgrounds struggle to know how to form positive relationships If you think about a young person who has moved from placement to placement who’s kind of used to the disappointment, they’re not going to be very open to any professional that tries to speak to them about their experience because they’re not going to have that expectation of stability, of support. I think a lot of the times professionals need to take a step back, as ironic as it sounds, to take a step back and allow that young person to get comfortable in their trauma, to get comfortable in their experience so they can tell you where it is going, so the right treatment can be structured to the right young person.
Andre Tomlin – Aisha, I am so glad we got you involved. You’re getting so much love in the chat, so read those comments. I wanted to ask you a kind of follow on question from that, because you spoke about stigma, and obviously stigma is so important, the stigma of mental illness, the stigma of being in care. How do you think that affects young people’s behaviour in terms of help-seeking and how do you think CAMHS needs to change so that young people from the care system, you know, can overcome these barriers and get help?
Aisha – I really don’t mean this to offend anybody, but my own personal experience of CAMHS hasn’t been great in terms of when I first came into care, I was offered CAMHS. No one explained to me what CAMHS was. No one explained to me where my session or whatever would lead to, or what the purpose was. Initially, when I went into the session, I found it quite patronising. You know, I found it to be, “Oh, darling…” You know, it takes a lot for a young person, first of all, to get themselves to the point of seeking help or accepting help. So, in my mind, for me personally, I was like, “OK, I’m coming to this meeting. I’m ready to talk about anything and everything,” and I kind of got in there and the first thing that was said to me was, “Oh, do you not want to be like the sun? Isn’t it so bright? Isn’t it so lovely the weather today.” And I was so confused. I was so confused and I was kind of like, “OK, but could we get to it now? I’m ready.”
And the further we went away from what I had prepared myself for, by the time we got into it, I didn’t want to talk about it anymore. You know, I was kind of like, clearly I have built up myself for no reason. And I think a lot of the time the approach that psychologists or anyone working with young people take is wrong in terms of pretending like the young person does not know their experience, pretending like they do not know the effects. They might not have a name for it, but I can tell you that they understand their experience. So being open to letting that young person and being, like, “What do you want to talk about? Share the part of your experience that means the most to you. How did you feel when this happened?” Of course, I cannot tell somebody how to do their job. But again, sort of looking at that young person, you can read notes, you can read reports on a young person. But how does that show you how they feel about their situation? How does that show you how they feel about their trauma? Do they even see it as trauma? Because a lot of young people don’t even notice the parts of their experiences that have been traumatic. And I think that is what is important in terms of understanding the cause and effect of their symptoms.
A lot of the times we read things and children in care have already got that stereotype of being helpless and being very problematic. And if somebody leads with that foot, it kind of helps reinforce the trauma. It kind of helps reinforce the bad thoughts and the bad self motivations and stuff like that, because it doesn’t encourage you to want to get help. It doesn’t encourage you to trust another young person or trust another professional in your life and to seeking help for what you yourself are struggling to deal with. So I think a lot of the times professionals need to be kind in their words and open and honest.
I think children in care are often underestimated. I think that’s the best way to put it. As much as we can say that children in care are … without being taught independence, but the one thing they have been independent in is themselves. They have had to deal with a lot of things themselves. So when it comes to any conversation about their individual experience, have the confidence in them to be able to work on it, to be able to talk about it, because if you don’t feel that positivity from the person that supports you, you will not feel positive about your way of helping yourself or the coping strategies being offered to you.
Andre Tomlin – Thank you. It’s really powerful to speak so openly and you’re getting lots of applause, well done. Lots for us to reflect on as individuals, as therapists, as people who work in the system, as researchers, and people who have an impact on how the system is organised. What do you think, Rachel, listening to Aisha there? What do you think needs to change so that the services that we offer to young people from care are more useful for people and something that they can actually engage with?
Dr. Rachel Hiller – I think it would help if Aisha was our prime minister, to be honest, that would probably be a good start. But also I would say that we work with a lot of young people in the care system and young adults who have been through the care system. And we hear this again and again and again. And we need to be listening to this and we need to really be listening to these voices.That’s partly how we managed to get this research done, is by saying young people can actually be asked about their mental health. They do have capacity to talk about their mental health and they actually have capacity to talk about very difficult things, and sometimes they want to be able to do that. So, to me, the really the take-home message and something we find in our research a lot is that young people in care have been sent to CAMHS and had a negative experience, and then will never engage with mental health services again. And that is an absolute shame.
I work with CAMHS clinicians, lots of my close friends are CAMHS clinicians. So that’s not really actually even about bagging the individual clinicians. There are whole systems that need to be looked at here in terms of the capacity and the training and the supervision and support that is available. But, I guess what we really want to get across here in the paper, and bringing it back to that conversation, is if you are working with young people in care and you suspect they might have PTSD or even actually don’t suspect it, you can do a screening tool with them. You can ask them. You can ask them about that. A few people in the chat have asked about a screening tool. And if you work with young people in and where it’s appropriate to do screening tools, there’s one called CRIES-8 that is freely available online. It’s a core measure in CAMHS and I can put a link to that, but if a young person in care has PTSD, they should be getting our best evidence-based treatments.
This is specifically about PTSD. But that is true for any mental health diagnosis that young people in care deserve our best evidence-based treatments. We don’t need to be making up different treatments. We don’t need to be putting our presumptions on them. We have some really well researched mental health treatments and young people in care should be getting access to them as much as any young people are. Helen, did you want to add anything onto that?
Prof Helen Minnis – It just says hear hear in the chat. I also think there is still a massive evidence gap, so in addition to evidence-based treatments… Aisha, for example, was talking about the relationship difficulties, we’ve got a child just starting about DDP, DDP’s used. We need to have trials. So it’s both ends, but absolutely, good assessment, good screening, use of evidence-based treatments for what we find when we can and more research.
Dr. Rachel Hiller – Yeah, and that also raises the point of, I’m not here saying you need to now go, if you’re a clinician listening, I’m not saying you need to go away now and give all of your care experienced young people trauma-focussed cognitive behaviour therapy. What I think we’re trying to get across is if PTSD is the issue, that is the treatment they should be getting. They might have other primary issues that need addressing. But to break it all down if PTSD is the issue, that’s what they should be receiving.
Prof Helen Minnis – Can I say one other thing, which is this thing about avoidance, because, you know, half of the young people that the social workers consented decided not to take part. Back to that, let’s face it, if you’ve got horrible memories flying at you, you’re really less likely to want to do research about those. And I just think, for clinicians, we need to remember that it’s really difficult for young people with PTSD to seek treatment. There is a great comment in the chat about that. The onus is on us to be open to that, and if it doesn’t work at that time to be open again. I’m not one to criticise my CAMHS colleagues because actually our services are not set up like that. So the message needs to go to…. if we can get Aisha as prime minister.
Dr. Rachel Hiller – Yeah, exactly. Yeah, I just think that’s exactly right. We just need to find ways to do better, but we’re all managing in very difficult systems. But the fact that avoidance is so core to PTSD and, again, not just in care-experienced young people, in anyone with PTSD, that is a core symptom. We do research with young people living in South Africa. We find exactly the same thing. But if you say, and I always give this example for some qualitative work we did, where we always say to young people, “If you had a friend that was going through what you were going through, what advice would you give them if they were really struggling?” And this was some work with care-experienced young people again. And this young person said to me, “Oh, I’d tell them they have to go and talk to someone, because you can’t keep it all inside. You’ve got to go and talk to someone and work out how to get help.” And I said, “Is that what you did?” And she said to me, “No, I would never do that.” And, you know, that’s kind of the crux of it, is that we all know that if we’re struggling, it’s helpful to talk to people. But actually making that happen is a different step. And if you’ve got PTSD, it’s an incredibly difficult step. So, as Aisha said, if you manage to get to a service and if you manage to get to a point in yourself where you think, “I’m ready to engage in this,” we need to be there to make sure we’re approaching that in the best way possible.
Andre Tomlin – What about priorities for answering other questions? What are the kind of research priorities do you think, Helen, do you want to answer that first?
Prof Helen Minnis – You know, it took us 10 years to get funding for the … and one of the reasons was that I don’t think anyone could believe how little we know. So I think there’s a big research priority for younger children under 12s, there’s such a huge evidence gap. For me, I think you need pragmatic, clinically-focussed work of the kind that Rachel has done, and we have to have young people working with us. I mean, it would be ridiculous to try and do that clincally-focussed without people like Aisha because, you know, we need to understand what it means in practice…
Andre Tomlin – Is it more about the type of research that we do?
Prof Helen Minnis – I think it’s the type. Pragmatic trials, we need pragmatic randomised controlled trials, and we need good follow-up studies, just like Rachel has done, I would think, using sensible, holistic measures, and they are not going to be cheap.
Andre Tomlin – Rachel, in your work, is it that there’s no funding at all for research or is it that it’s being funded in adults and not in young people?
Prof Helen Minnis – It’s mainly adults, but go for it Rachel.
Dr. Rachel Hiller – Yeah. I mean, well, there’s not enough funding for any mental health research. Let’s face it. I think we all think that’s the bottom line. But as Helen said, the research we have, you know, we talk about the inequality and the inequity that young people in care face, and that’s also absolutely true for the research quality that services have that young people have to draw on to address their needs. So there’s so much work that could be done. Our follow-on from this work, actually, we’ve been really lucky to get some funding to do trials, to look at how we can start treating PTSD in this group, and partly that’s looking at kind of lower intensity options because we know there’s so many young people that need support and CAMHS just doesn’t have capacity to pick that all up. But we’re also soon looking at how we can implement trauma-focussed cognitive behaviour therapy within services. So let’s look at why we’ve got this huge gap between research and practise, what is going on, and part of that will be near impossible to address, but I refuse to think all of it can’t be addressed. There’s got to be something we can do to move the field forward.
I think the other thing that we need funders to realise is that there’s just so little research on young people in care that we have to make sensible and pragmatic decisions. It’s not going to look the same as research on big populations of children. Helen and I are both in academia, so I’m sure we’ve written that back to about 20 reviews in the last three years or something.
Andre Tomlin – So let’s bring it together. I’m sorry, we’re out of time, this has flown by so quickly, we need to wind it up, I’m afraid, but it’s just been brilliant listening to you all. We’ve said a lot of stuff here that needs to be actioned. So we’ll summarise that. We’re going to share the video and the slides and all that kind of stuff on the … website after the meeting today. Just a couple of things we want from you before you go. The first is to find out whether this paper has changed your perspective on this issue. So it’s a quick poll that’s popping up on your screen here, if it has and you strongly agree that’s a 10, if it hasn’t changed your perspective at all then that’s a 1.
So tell us about your view of this paper and this research and this whole conversation that we’ve had tonight. Rachel will stick this in her next grant application, evidence of impact, well, depending on the result, maybe she won’t. I don’t know. We’ll have to see. How are we getting on, Matt?
Matt – Yes, people are flooding in with their responses. I can just see. One person hasn’t done it yet. Now they have. Well done.
Andre Tomlin – Wow. OK, well, that’s pretty impressive. So that looks like, 60% say seven or over.
Dr. Rachel Hiller – I feel like as a researcher, I have to point out there might be some limitations to your survey method, having me sitting on the phone here. (Laughs) But thank you for being kind.
Andre Tomlin – It’s based on a flawed method and sample. One final thing we would like to ask is whether you have enjoyed tonight and whether you’d recommend these sorts of events to your colleagues and to your friends. 10 is, yes, a lot and 1 is not a lot.
While you’re filling that in, I just want to say thanks to everyone who has joined us this evening, especially to Rachel and to Helen and to Aisha for sharing and being part of the conversation and being so open and honest and thoughtful, to Douglas and Steph and Matt, who, as always, have been brilliant helping make this happen. We’ve got two more campfires coming up in the diary. We’ve got one on April 26th on self-harm support tools for school staff, and another one on the 25th of May on ADHD and medication for young people with autism. Those are both bookable on the website, so have a look if you’d like to come along and that’s a nice result. Thanks very much for such positive feedback. Do tweet #camhscampfire if you’ve got any other thoughts on what we should be doing with these sessions. Thanks very much for joining us, everybody, and we’ll see you next time.
Young people in out‐of‐home care are substantially more likely to meet criteria for PTSD than their peers, while their early maltreatment exposure may also place them at greater risk of developing the newly proposed complex PTSD. Yet, there remains limited empirical evidence for the mechanisms that might drive either PTSD or complex features in this group, and ongoing debate about the suitability of existing cognitive behavioural models and their related NICE‐recommended treatments. In a prospective study of young people in out‐of‐home care, we sought to identify demographic and cognitive processes that may contribute to the maintenance of both PTSD symptom and complex features.
ACAMH’s vision is to be ‘Sharing best evidence, improving practice’, to this end in December 2020 we launched ‘CAMHS around the Campfire’, a free monthly virtual journal club, run in conjunction with The Mental Elf. We use #CAMHScampfire on Twitter to amplify the discussion.
Each 1-hour meeting features a new piece of research, which we discuss in an informal journal club session. The focus is on critical appraisal of the research and implications for practice. Primarily targeted at CAMHS practitioners, and researchers, ‘CAMHS around the Campfire’ will be publicly accessible, free to attend, and relevant to a wider audience.
About the panel
Dr. Rachel Hiller is a lecturer in child and adolescent clinical psychology in the Department of Psychology, University of Bath. Her research examines cognitive-behavioural processes that link the experience of child trauma or maltreatment to psychological outcomes, with a focus on posttraumatic stress disorder (PTSD). It is focused on high-risk groups, including those exposed to multiple traumas or maltreatment and where trauma is experienced in the context of ongoing adversity. Rachel is particularly interested in exploring ways to improve access to evidence-based trauma-focussed psychological interventions for vulnerable groups of youth and in how different services (e.g., social-care, mental health, education) understand and respond to the needs of trauma-exposed young people.
Helen Minnis is a Professor of Child and Adolescent Psychiatry at the University of Glasgow. Professor Minnis spent time working as an Orphanage Doctor in Guatemala in the early 1990s prior to training in Psychiatry, and this stimulated an interest in the effects of early maltreatment on children’s development. Her research focus has been on Attachment Disorder: clinical aspects, assessment tools and behavioural genetics. She is now conducting intervention research for maltreated children including a randomised controlled trial of an infant mental health service for young children in foster care.
André Tomlin is an Information Scientist with 20 years experience working in evidence-based healthcare. He’s worked in the NHS, for Oxford University and since 2002 as Managing Director of Minervation Ltd, a consultancy company who do clever digital stuff for charities, universities and the public sector. Most recently André has been the driving force behind the Mental Elf and the National Elf Service. *The Mental Elf is a blogging platform that presents expert summaries of the latest reliable research and disseminates this evidence across social media. They have published thousands of blogs over the last 10 years, written by experts and discussed by patients, practitioners and researchers. This innovative digital platform helps professionals keep up to date with simple, clear and engaging summaries of evidence-based research. André is a Trustee at the Centre for Mental Health and an Honorary Research Fellow at University College London Division of Psychiatry. He lives in Bristol, surrounded by dogs, elflings and lots of woodland! Bio via The Mental Elf
I am an information scientist with an interest in making knowledge from systematic research more accessible to people who need it. This means you. I’ve been attempting this in the area of Evidence-Based Health Care since 1995. So far the results have been mixed. For some reason we expected busy clinicians to search databases and appraise papers instead of seeing patients. We also expected publishers to make the research freely available to the people who paid for it. Ha! Hence The National Elf service.
Dr. Stephanie Lewis
Dr. Stephanie Lewis is a Clinical Lecturer in Child and Adolescent Psychiatry at the Institute of Psychiatry, Psychology and Neuroscience (IoPPN), King’s College London. She studied medicine at Imperial College London, and since graduating has undertaken integrated clinical and academic training, including psychiatry training at South London and Maudsley NHS Foundation Trust and the IoPPN. She is currently undertaking an MRC Clinical Research Training Fellowship, and continues to work as a psychiatrist in child and adolescent mental health services