Dr Rachel Hiller (RH): Not all children in care have the same mental health outcomes. They, you know, children in care are children they’re children, and young people, like any child and young person, any child and young person that goes through trauma, they might have a range of different mental health outcomes and helping them to unpack that and understand that under our current models of mental health seems to be something that is much more helpful for this group in terms of helping them understand their needs through some good quality psychoeducation but also as we’ve talked about, making sure we’re giving them the treatment that has the best evidence for helping them overcome that issue, whether it’s PTSD or something else.
David Trickey (DT): Hello, I’m David Trickey I’m a Consultant Clinical Psychologist and Co-Director of the UK Trauma Council.
RH: Hi, I’m Rachel Hiller, I’m an Associate Professor in Child Mental Health at UCL and also currently Co-Director of the UK Trauma Council.
DT: And today we’re going to talk about children in care and post-traumatic stress disorder. I’m aware that some services will call children in care, looked after children or care- experienced children. The phrase we’re gonna use today is children in care. Do children in care have post-traumatic stress disorder?
RH: So we’ve known for a long time that there’s very high rates of PTSD in this population, around, well, almost 20 years ago now, a really large study came out that showed that rates of PTSD were 12 times higher in children in care than the general population and more recently there’s been some smaller scale, but still really important screening studies that have been done here in the UK, for example, with children in care that are on wait list for CAMH services, where we see very high rates of high PTSD symptoms, in some cases, up to kind of 70% of the young people they’re screening on those wait lists are showing really high PTSD symptoms.
Right, now obviously, children in care, many of them will have quite complicated and complex difficulties. Is it helpful to think about a label like PTSD in this particular population? I mean I think it is, I, I don’t ever want to be throwing around diagnostic labels unnecessarily, but we do know that the benefits of diagnostic labels is giving young people an understanding of their mental health needs.
Now, PTSD very rarely presents as just PTSD but that is true of many other groups of young people, not just children in care, children in care, absolutely the research shows and anyone that works in mental health services with children in care will know that it’s very rarely one thing, there’s often lots of comorbidities, risk and safeguarding issues you’re trying to manage some really practical day-to-day issues, whether they’re stable in their placement, whether that might break apart, lots that clinicians have to deal with, but within that, if they are meeting criteria for PTSD, or even if they’re experiencing really high symptoms of PTSD.
I think it’s incredibly important that we give young people space to understand what that is, why they’re experiencing it, and also to guide treatment decisions, obviously, because if we don’t know what’s going on for a young person, it’s very hard to make evidence-based treatment decisions.
DT: Does PTSD need to be assessed differently in children in care?
RH: Compared to the general population, how you might assess it in other young people? No. So we did a study a number of years ago now where we looked at whether our models of, you know, how we understand PTSD is the same in children in care as it is in with other young people. So in that study we looked at in particular, the Elhers and Clark cognitive model of PTSD, which is a pretty, as you know, fundamental model of PTSD that we use in the UK underlies a lot of our treatment approaches.
So we looked at whether that model actually applied to children in care, because a lot of what is discussed, and a lot of what we see is a barrier to recognizing these diagnoses in that group is this idea it’s somehow very different in children in care, and we found no evidence for that. So we found that cognitive models of PTSD, the symptom profiles of PTSD are the same in children in care as they are in other groups. There are many young people in care, not in care that have experienced very complex trauma, if you call it that, or developmental trauma if you call it that and children in care were showing the same types of symptoms, the same drivers of PTSD, as we would expect to see in a general population.
Again, it doesn’t mean it’s not more complex, there’s much higher rates of comorbidities as we’ve already discussed. There’s lots of other things going on that you are trying to navigate when you’re providing mental health support, but fundamentally, PTSD looks the same and it can be assessed in the same way.
So we’ve got some really good tools that are already available to assess PTSD, we don’t really need to develop new ones we’ve got the CRIES-8 which is the eight item screening tool for PTSD as you know, that has been used a lot with young people in care, we know it’s a really acceptable measure for screening PTSD in that group as it is in other groups, and then of course we’ve got all the way through to your kind of gold standard diagnostic interviews if services use those, so the message is, we would say assess it within your general assessment of the child’s mental health needs the way you would with any young person.
DT: Right. So you talk about the CRIES-8, the Child Revised Impact of Events Scale, does that have to be used by a mental health professional or could other professionals involved in the child’s care use it?
RH: No. So the CRIES-8 is I think, a great little tool because it’s freely available, it’s already an NHS core measure, many systems will already have it there to kind of input if you’re using different systems in your clinical practice, but it’s there as a self-report tool so for 8 year olds plus, is the age, so 8 to 18 are the ages it’s used with, and depending on the young person, they might just want to complete it themselves, certainly many of our teenagers just want to do it themselves. Obviously for younger people or younger children, the clinician might want to be sitting with them and helping them scaffold that, but it can be done by whoever a trusted adult might be in their life.
We use it often in our research where the carer supports the young person to complete it, it might be their social worker. One of the challenges when working with children in care, but also one of the things that I think is really important, is stepping back and making sure we’re all really clear of who the important adults are in that young person’s life, because that’s gonna go far in understanding their mental health needs and also supporting them through any treatment.
DT: So, Rachel, I know that you’ve recently published a paper about diagnoses and different diagnostic labels within children in care. Could you tell us a bit about that?
RH: Yeah, so a project led by my PhD student, Rosie McGuire, used a what we call an experimental vignette approach to understand diagnostic decisions for children in care versus a child not in care, and so the participants in that project were UK based, child and adolescent mental health workers of different backgrounds, but mostly CAMHS workers and essentially they received, they randomly received one of two vignettes that described a young person experiencing PTSD symptoms. They were identical, except in one case the young person was in care and in the other case, they were not in care, and what we found in that study was quite clear evidence of a diagnostic bias specifically for PTSD, which is what we looked at, and so that was that even with identical symptoms, if the young person was in care they were far less likely to have PTSD recognised, it was only recognised for around 15% of the clinicians that were randomised to that group, you were far more likely to receive a PTSD diagnosis if you were randomised to the young person who was not in care, and this had flow on implications for their treatment decisions as well, so the clinicians randomised to the children in care vignette were far less likely to choose a NICE recommended treatment for PTSD, and so there we see quite stark evidence that we perhaps make decisions differently when we are presented with a young person in care.
Now, I think it’s relatively understandable why that can happen because you are making decisions when faced with quite a lot of complex, well with a lot of complexity and with a lot of other things going on in that young person’s life, but it’s also the case that many young people coming into CAMHS have very complex needs, not just children in care, so there does seem to be something really specifically about that population where we’re perhaps not as willing to use our standard diagnostic frameworks, so one thing we see a lot of is the use of more general terms like developmental trauma disorder or developmental trauma as kind of a catch-all term for describing mental health, and I think my view is that that can create some problems in terms of how we help young people understand their mental health needs, but also in terms of how we decide what treatments to offer them.
DT: So does that paper mean that there may be children in care who not only are not being diagnosed with PTSD, but may then not be receiving an evidence-based intervention for their difficulties?
RH: Yeah, I mean we know in general, not just for PTSD, but in for many other mental health outcomes, they’re much more elevated in children in care, so children in care have higher rates of depression, of anxiety, of conduct, difficulties of PTSD. These are all diagnoses that we have defined and all have treatment pathways based on NICE guidance, and we know that children in care often really struggle to get onto those treatment pathways, again, you know, as we all know, CAMHS is really under-resourced and can really struggle to meet capacity or have the capacity to meet the needs of the numbers of young people that require support.
So there’s, it’s not that there’s an easy answer to this, but certainly when a young person is making it into CAMHS for an assessment, we would strongly encourage that they’re being assessed based on what we know about mental health right now. Developmental trauma can be a useful way to understand a young person’s needs, but it conflates what they’ve experienced, which can be very complex in its own right, it can be adversity, abuse, neglect, it might be trauma that they’ve experienced within the care system, it conflates that with their mental health outcomes, and that, I think is challenging because not all children in care have the same mental health outcomes.
They, you know, children in care are children, they’re children and young people, like any child and young person, any child and young person that goes through trauma, they might have a range of different mental health outcomes, and helping them to unpack that and understand that under our current models of mental health seems to be something that is much more helpful for this group in terms of helping them understand their needs through some good quality psychoeducation, but also as we’ve talked about, making sure we’re giving them the treatment that has the best evidence for helping them overcome that issue, whether it’s PTSD or something else.
DT: But do those evidence-based interventions, those NICE recommended treatments, do they work for children in care?
RH: I think it’s a very good question, and I think there’s much more research that needs to be done with that population. They’re out of, when we look at other groups of trauma exposed young people by far, children in care do not have the same evidence base, partly because, there are challenges with researching with that group because of the legality around how you can send them into projects, et cetera. But we do know that those interventions work for young people that have experienced very complex trauma, maybe you would call it developmental trauma, if that’s a term that people use, trauma focused CBT as an example, which we know is our best evidence treatment for PTSD that was originally developed for children that had experienced sexual abuse, often what we hear is that that intervention is only appropriate for children that have had one-off traumas, car accident, maybe a one-off assault, and that that can be really pervasive actually as, in mental health services, this idea that the treatment doesn’t generalise at all, and that is just simply not true.
So we have good evidence that it works, so, a particularly trauma focused CBT with children in the foster care system, a lot of that evidence is from the US foster care system. We definitely have a bit of catching up to do in the UK, but it is by far our best evidence treatment, and it by far has the strongest evidence for children that have experienced very complex trauma, abuse, maltreatment, where there’s lots of ongoing risk and adversity, where there’s comorbidities.
It’s very rare in CAMHS these days that any young person has just had one thing happen, that’s not really the profile of any young people we see in CAMHS. I presume from your experience, that’s also true, David. So this idea that somehow children in care need something completely different because they happen to be in care. I don’t think we have the evidence to support that. I think the best evidence we have is that those kids do as well with our current best evidence treatments.
DT: Right. And do you think it’s feasible to actually provide trauma focused CBT or other evidence-based interventions to this population of children in care with PTSD?
RH: Well, I think it’s incredibly challenging and I really feel a huge amount of empathy for our mental health services and what and our social care services and what they’re navigating in terms of the complexity of young people that are coming through to them, but also decisions they’re having to make around how many sessions they can offer, what they can do if a young person disengages from treatment and maybe doesn’t want to come back for a while.
There are some real fundamental problems in our services that are a huge barrier to them being able to deliver best evidence treatments. I think that’s true for PTSD treatments as well as many, many other mental health treatments, but that doesn’t mean we just don’t do it. So we’re running a study at the moment called the Adapt trial that is actually looking at this question. So looking at how do we implement trauma focused CBT to children in care in our mental health services? What does that mean for people working in those services? But what does that mean for the young people? So it can, we know it can be done, it’s actually done all the time that we deliver best evidence treatments to young people, including young people in care, but there’s definitely more resistance, which we’re showing in study after study now around the idea that you’d use those kinds of treatments with children in care and that’s a message that I think we really need to think about as researchers, as and within services around why we don’t use those treatments if we are seeing a young person who is coming into our service, who we do see every week for treatment, why aren’t we fully assessing what their mental health needs are and making sure we’re providing the treatment that matches their primary mental health needs?
DT: So we’ve talked a lot about post-traumatic stress disorder (PTSD), but what’s the difference between PTSD and Complex PTSD?
RH: So complex PTSD was introduced into one of our diagnostic manuals, the ICD, not the DSM, but it was introduced a couple of years ago into one of our diagnostic manuals. I think the best thing I can stress about complex PTSD is that it is still PTSD. So if a young person has Complex PTSD, their main symptom profile is PTSD as we understand it. The complex part of Complex PTSD, are things like difficulties in interpersonal relationships, really significant kind of emotion dysregulation and kind of negative self affect, negative affect, like, you know, I’m not worth anything, I can’t trust anyone, these things we very commonly see in PTSD, and there’s, you know, I think there’s gonna be many years of ongoing research and debate around how useful it is to have a separate entity for Complex PTSD versus PTSD, and it is really important that those debates happen, it’s really important that the science happens to try to improve the precision of how we understand mental health.
But of course, in the meantime, mental health workers need to be able to get on with their jobs and make the best decisions they can in the room with a young person. So whilst Complex PTSD for children in care, many of them will meet criteria for Complex PTSD, because of, you know, maybe at one point they did have standard PTSD, but it’s often been a decade since they’ve had those needs assessed. If I was left for a decade with PTSD related to maltreatment and no one had supported that, I would probably have interpersonal difficulties, you know, it’s not necessarily surprising that the level of complexity might increase as they move into adolescence and if they haven’t got help at an earlier stage, but the other thing to know about Complex PTSD I think, is that all the papers coming out so far of which there were a few that came out only in recent weeks are showing that trauma focused CBT is still the best treatment for it, and actually the rates of symptom improvement are the same, so if a young person has Complex PTSD or standard PTSD, the treatment decision should be the same, rates of improvement are the same. It doesn’t mean, of course, that they might not need more sessions, we know when young people are more complex, they need more sessions, they might need more time to work on their trauma narrative, whatever it might be, they might need more psychoeducation support, so it doesn’t mean that it’s going to look identical, but the actual treatment approach is the same. It doesn’t mean they need a whole new treatment approach, certainly there is no evidence for any other treatment, other than trauma focused CBT and the second line treatment being EMDR, they’re our two best evidence-based treatments for PTSD, regardless of whether it’s complex in nature or not.
DT: Okay, so the NICE guidelines say for PTSD, you provide trauma focused CBT and if that doesn’t work, EMDR? And it does explicitly say, if it’s Complex PTSD or if there’s more complicated factors you might have to build in extra sessions, and you might have to spend a bit more time developing trust with a young person. Exactly. If they have experiences that colored their view of things and now they don’t trust adults, particularly adults in positions or authority, then of course you’re gonna have to take a bit more time to overcome that so that you can do the treatment, but the intervention is the same for Complex PTSD or just PTSD.
RH: Yeah, that’s exactly right, it’s all outlined there in the NICE guidance already, you know, this is a group for many very understandable reasons that are not going to just straight away trust an adult that they go and see, they’ve been let down by a lot of adults, a lot of professionals that were meant to help, that they’ve not seen as helpful. . We know a lot of young people in care that we work with actually point blank refuse to go to mental health services because they’ve had earlier experiences that have not been positive for them.
So there is a, you know, I don’t want to give the impression that this is just an easy thing to start rolling out, there’s a huge amount of challenges to overcome for a young person to be able to get to mental health services, for mental health services to have capacity to take on that young person, the challenges are extensive, but there are young people in care in mental health services, they are going to assessments or consultations or whatever services call them, they are receiving mental health interventions, and so that does, that does already happen, and what I’d really encourage, and what we try to support services to do is take a step back and think about how they’re assessing the needs of their young people and what treatments they’re providing and if it’s PTSD, which it’s not always that, you know, I think that’s also an important message to get out there, that there’s no one thing that a child in care might have in terms of their mental health, again they’re fundamentally a child or a teenager like any other child or teenager, they don’t all have one thing going on for them, that’s, that is okay, but if it’s PTSD we really want them to be getting our best evidenced treatments.