Mark Tebbs: Hello and welcome to the Mind the Kids podcast series. I'm Mark Tebbs, I'm your host for today. I've kind of spent my whole career working in mental health from frontline services through to kind of director of mental health commissioning in the charity sector, NHS and social care. I'm currently chief executive of a infrastructure charity. So I'm really interested in how we kind of support grassroots organizations and that kind of community impact. And I guess that background in commissioning kind of makes me really interested in around how we understand need, lived experience, evidence of practice, and how we really measure impact and value for money. And I'm also a parent and, you know, have seen the system from a kind of parent's perspective too. So I'm really delighted to be hosting the podcast. In these episodes, we have the opportunity to talk to researchers and practitioners about their research. It's an opportunity to talk and shine a light on some of the latest developments in children adolescent mental health.
Mark Tebbs: Today I'm delighted to be joined by Professor Kapil Sayal to discuss the Stadia trial, which is published in the Journal of Child Psychology and Psychiatry and was led by experts from the School of Medicine at the University of Nottingham and funded by the National Institute for Health and Care Research. So, welcome Kapil, lovely to be speaking to you today on the podcast.
Prof. Kapil Sayal: Hi there Mark, it's pleasure to interview you. Thank you so much for the invitation today.
Mark Tebbs: Great stuff. So let's start with some introductions. If you could just say your kind of name, where you're working, maybe some of your research interests.
Prof. Kapil Sayal: Yeah, of course. Hi, I'm Kapil Sayal I'm based in Nottingham. So I've got a joint appointment across the University of Nottingham where I'm a professor of child analysis and psychiatry, but I also work in the NHS as an honorary consultant within CAMHS. And that overlap helps to give me a really good broad overview, particularly in terms of the areas of research that I focus on, which is very much around health services research, looking at access to care for children and young people with mental health difficulties, but then also thinking in terms of the types of care and interventions that are offered and their outcomes. And broadly looking at across a range of settings over the years, including primary care and schools, but also within CAMH settings themselves. So sort of community outpatient type CAMHS but also recently we've been doing a big study looking at inpatient care particularly around children and young people who require admission but end up being admitted far from home or out of area.
Mark Tebbs: Brilliant, okay. So did you collaborate with other people on the paper? There's an opportunity for you to give a little bit of a name check to them.
Prof. Kapil Sayal: So the STADIA study, STADIA standing for standardized diagnostic assessments, was a big national study, big national trial. It was set across eight large NHS services all across England, a really good spread. So we had colleagues that we were collaborating right from Manchester in the north through to through to London and Surrey, but also some really fantastic methodologists that are based in Nottingham, our trials unit, but also health economists and qualitative researchers. But a huge star in terms of Stadia was one of our colleagues, Colleen, who's a parent with lived experience of accessing CAMHS in relation to her child. And right from the outset at very early stage, I and we as a team had discussions with Colleen, with Colleen being a full team member throughout the course of Stadia over those six years. And through her leadership of our patient and public involvement groups, Colleen led the setup of us having to lift experienced advisory panels for Stadia, one for parents. One for young people and the young people call themselves the Stadia Digital Youth Lab, which was a lovely title. And over the five or six years that Stadia ran, actually through the pandemic as well, we had all the same members with us from start to finish and they were very closely and absolutely involved in our dissemination events. It's been a cast of thousands, of course, in terms of children, young people, but absolutely fantastic to work with our young people and parents in particular.
Mark Tebbs: Great to hear lived experience influencing a study of this kind of size and scope. So let's start at the beginning. So how did you go about the research and kind of what was the, motivation? Why did you choose to look into this area?
Prof. Kapil Sayal: Yeah, really good question. As I mentioned, terms of my background, work in CAMS, and I've worked in CAMHS for many years. But we've also known over, particularly over the last 10 or 15 years, that there has been a change. The number of referrals have increased. The level of need, the level of acuity as well has also changed and that hasn't gone unnoticed more widely as well. So Stadia actually came about from a commissioned research call from the NIHR, the National Institute for Health and Care Research. And one way of thinking about the NIHR is sort of the research arm of the NHS, where they commission and fund studies and research, where there's a need for information for the NHS, for the NHS to think about how to most effectively think about and allocating resources. And in this particular instance, this was around emotional difficulties and emotional disorders, such as anxiety disorders, depression, OCD in children and young people. But also slightly another level of that was the controversy around diagnosis in the sense that that there are very broad views about the value or not of thinking in terms of diagnosis and what potentially the added value of that is. And then within services, perhaps around the use of things like standardized diagnostic assessment tools. So using particular measures or instruments within services to see if they can make a difference. And that genuine uncertainty about whether it's helpful, whether it makes a difference. So this is how the call came about. So looking at whether the use of tools like this, diagnostic assessment tools, actually make a difference to diagnosis and outcomes for children and young people. So we put a team together and applied for that funding. And that's how Stadia began.
Mark Tebbs: Brilliant. Okay. So we'll get into a little bit more on that kind of controversy towards the kind of like end of the podcast. But so it'd be really good to just continue to kind of set some of that scene. So you mentioned the standard assessment tool, the development and wellbeing assessment. Could you explain what that tool is and how it was used to help clinicians make more timely decisions about referral management?
Prof. Kapil Sayal: Yeah, yes, of course. So there are a number of standardized diagnostic assessment tools available that generally have mainly been used for research purposes rather than necessarily in clinical services to help with clinical thinking and decision making. But something like the development and well-being assessment called DAWBA for short has a number of advantages. It's been around for around 25 plus years, very well validated. And it was actually developed back in the 1990s to give us figures, give us national figures in terms of how many children and young people have different types of mental health disorders. So back in the late 90s, the first national prevalence study to look at the levels of disorders and difficulties was commissioned by the ONS, Office of National Statistics. And the DAWBA is based on diagnostic manuals such as DSM and ICD. It's very broad, it covers a range of difficulties like emotional disorders, also potentially can also cover other difficulties as well. And was used in relation to well over 10,000 children and young people. These surveys have been repeated twice since then, once in 2004, once in 2017. And they've given us our national figures initially suggesting that's about one in 10 children, young people probably meet criteria of a mental health disorder. By 2017, that figure was around 12%. So it's sort of crept up very gradually over that time period. But the door is also is used clinically a bit, particularly in Northern Europe and Scandinavia as well in services and in a few clinics in the UK. But one of the reasons we chose the DAWBA for Stadia was that because it's been so well tested and so well used in well over 20,000 plus children, through it a computerised diagnostic algorithm has been created as well. So that if used in research, it can be used in a more quick to complete way, which does make a huge difference, of course, for young people and parents completing this. And then those findings, it combines the responses from young people and parents. And those findings can then be related against the algorithm that's based on data from over 20,000 children, young people. I need to stress that it's not the computer making a diagnosis. The computer itself doesn't make a diagnosis. What it does is through it, it gives an indication, sort of level of likelihood of meeting criteria for particular disorders such as, say, an anxiety disorder or OCD or depression. And particularly will highlight if you're likely to fall in the most extreme 5 % in the community. But then ultimately, it's about it being an extra bit to help with the assessment, an extra bit of information put together with all the other usual information that that's gathered. And in Stadia, that's very much what we were testing. What was the added value of having this completed? We created quite a really nice visual infographic DAWBA report based on the responses. That report was actually also sent to and shared with families who really liked it. Actually, they really liked having that feedback. I think so often in many areas of our lives, we answer questions, we provide data, but you don't necessarily get very much back in that regard. So actually that was a way of kind of sharing the results with the people who'd done the questionnaires, the doggo questionnaires, but also that report was shared with the clinicians in CAMS as well. It became part of the record and they have that extra bit alongside all the other information that would usually accompany a referral or be thought about in the assessment. And we did this at the point of just after the referral had come into CAMHS. So STADIA was very much around children, young people with emotional difficulties who'd been referred into CAMHS. And at that point, we got in touch with the families, if the children are younger age group. For the teenagers age 16, we contacted them directly to tell them about the Stadia study to see if they're interested in taking part. And then as it was, I mentioned earlier, it's a trial. So we were testing one approach versus the other. So it's very much like a toss of the coin. And then at completely at random, Half were offered the DAWBA to complete, half weren't. So the other half were with usual care, usual assessment. And then once the DAWBA was completed and the DAWBA was available, that was then shared with the clinicians deciding about the referral, the triage clinicians to hopefully take into account in their decisions about whether or not that referral was accepted into CAMHS or signposted elsewhere.
Mark Tebbs: That's such a great description of the pathway and how it was used. So what did you find? Was there anything that was particularly surprising?
Prof. Kapil Sayal: So, Stadia actually ran, we started in 2019. It was a huge trial, over 1200 children and young people taking part across our eight different parts of the country think when we think probably, if not the largest, certainly one of the largest trials taking place in CAMHS in the UK, if not internationally. But also as said, we started in 2019 and inevitably, as you'll probably work out, that there was the impact, huge impact of the pandemic over 2020 and 21. And initially actually what that meant was for the first few months, much came to a standstill. We focused on routine referrals into camps and not urgent or emergency referrals, which obviously need a quick response and assessment. But soon a few months after the onset of pandemic, of course, referrals went up greatly. So we continued recruiting participants in trials in 2021, followed people up for up to 18 months into 2023. And within that, terms of looking at the results, we were very much thinking about this in two ways. One is the story of the trial, kind of the toss of the coin. Does it make a difference being offered the DAWBA and completing the DAWBA versus just usual care, usual assessment? But secondly, this also turned out to be a really unique opportunity. There's no other study or data like this in the UK that has followed up a group of children and young people over these years and for up to 18 months as a snapshot over time in terms of actually what happened, what care was received, how do these children and young people get on? So they're very much two stories. But in terms of the first one, whether the DAWBA made a difference. To our surprise, and of course, admit to our disappointment, it didn't really have an impact in terms of clinical care. So it didn't particularly influence diagnosis or whether interventions were offered or received or influence clinical outcomes. The only area where there was a little hint where it might have had an impact, not enough to say, there was a, what's sometimes called a statistically different, sorry, the numbers were dramatically different, but perhaps a slight hint that if the DAWBA had been offered and completed, a slight increase between about 3 and 6 % of the referral being accepted, whether that be the actual referral that brought you into CAMHS and the study, or sometimes they were re-referrals, because sadly, the initial referrals in over half. Half our participants were actually turned away, signposted elsewhere, but not getting the help at that point in that time from CAMHS. And inevitably that meant, in fact, about a third of the children and young people ended up being re-referred to CAMHS over that 12 to 18 month period. And then some of them were seen later on. So perhaps it made a bit of a difference in terms of referral acceptance. And maybe that's because it was close in time when the door was completed, that information was relatively fresh, whereas perhaps had much less impact in terms of the assessment and diagnosis. But often those assessments took place many, many months after the referral and that was compounded by the pandemic in some instances. The gap, the delay between the referral and that first assessment was sometimes close to a year, which is which is a really long time, a huge amount of time in a child or young person's life to be waiting.
Mark Tebbs: Yeah. So let's stick with that kind of the first part of the kind of like the story here. So what would you hoped would be the impact of the DAWBA?
Prof. Kapil Sayal: So the way the study was designed and what we were trying to answer was the question. And of course, with genuine uncertainty, the reason for doing this is you don't know whether one approach is better than the other. But was hoping that it would have an impact on clinical care and clinical decision making. I suppose that first step of that decision making was about the scrutiny of the referral the referral coming in and a decision having to be made because sadly the number of referrals that come in exceed the capacity of CAMHS, CAMHS being a specialist secondary care mental health service. And certainly with the DAWBA we did think in advance that it could work in either direction because for some children, young people, it could well be that the DAWBA scores were not particularly high and actually suggesting that the difficulties are mild, CAMS isn't the right service, and actually it is more appropriate to think about other places or other resources that that might be able to help. But those for that more severe ones, they're the ones that perhaps are more suitable to be accepted. So very much helping with that triaging. So certainly for the referral ones, the two things could have cancelled each other out in that sense. They have the mix of... the most appropriate ones being accepted for further assessment. But then certainly further downstream, we did hope that this could be help as part of that conversation in terms of the child, young person, the parent and the clinician, that there is a DAWBA report. Let's have a quick eyeball of that and see what it says. Are there particular areas we don't need to focus on? It's actually the DAWBA saying it's okay and other areas we need to pay a bit more attention to. Looking back, I certainly wonder if the pandemic had other impacts, not just, of course, the broader impact on mental health and well-being, but also, suppose, the nature in which services and appointments happen. So I've mentioned there were certainly delays in the longer waiting lists, longer to be seen. But also certainly over that 2020, 2021 time period, a bit of a shift. So traditionally, CAMHS has always been somewhere you go to in person and you go to the clinic and you see somebody in the clinic room. But actually over that time, and we had envisaged that participants may take their door report along with them. A bit like one of the analogies actually is the Red Book with health visitors. It's a family health record. But it's your record and it's brought out in terms of the appointments you might have with the health visitor. So something that you might take along is very visual to you, you can eyeball it. And of course, the clinician has a copy as well. But actually, the nature of lots of appointments changed. In fact, over that time, lot of assessment appointments as well were taking place online on Teams, in which case it is much more fiddly to then suddenly bring something out, even electronically or wave it around or share your screen. So it may have got a little bit lost in relation to that. Alongside the main trial, though, we did, very fortunately, we had the opportunity to do a linked qualitative study. So by qualitative study, that means sort of in-depth interviews with a range of people. So as part of our great team, we had interviews with interviews took place with young people, with parents and carers, with clinicians in CAMHS. Within CAMHS also some of the team managers and service leads, but also service commissioners. So commissioners, people who decide how funding is spent across all of healthcare to get that really broad range of perspectives and views around diagnosis and assessment young people and parents told us is generally they really like doing the DAWBA. They like the online nature of it. It was pretty much all done online. fact, Stadia, we never met any of the people taking part in Stadia. Everything was done by phone and online. But they liked doing it. They liked the report. And many of them described using and sharing the reports also with other agencies. We were told that some took the report along to their GP.
Others shared it with school. Some had it on their phone as well so that they could share it with people as and when that they wish to. But they were also very nuanced about diagnosis. For them, the option of considering a diagnosis was seen as important, but not the be all or end all. Very much a first step, a stepping stone, but it's helping to then decide what's the most appropriate help and support, support to receive.
Mark Tebbs: And through those interviews, did you get a sense of why it was helpful? Was it validating of their experience? What was the feedback?
Prof. Kapil Sayal: Yeah, absolutely, Mark. You just sort of nailed it, really. think a lot of them found that it did validate the difficulties that they had. It put it into context, particularly because through the diagnostic algorithm, what the report showed was an infographic in terms of how you, on average, how you might compare with 100 other children and young people with those different categories. And it was all color coded. And for some, actually, it was reassuring that the difficulties weren't severe in context or in perspective, but for others that it was, and it was significant and something that needed to be taken seriously. And absolutely, that's something about being listened to, even though the sense of that, of course, that the responses were going to the computer, but actually getting something back. I guess in the same way as we might in other areas of healthcare. So I don't know, if you go for a blood test you probably would reasonably expect to get the results. And ideally also the numbers or if you're having a blood pressure done that rather than just somebody saying it's normal or it's okay, but actually saying it was this over this. Perhaps in mental health care that sharing doesn't happen as much. Although questionnaires are done and outcomes are assessed, often it's paper and pencil questionnaires that are completed, but you don't necessarily get the results. And another way of thinking about it in a way, it is like a test. And naturally, you would be interested to know how you did it. Not a test of you, but a measure and what your scores might be on that. having that feedback was really well received. Actually, another interesting aspect was because obviously, we were doing this as part of a research study. But the research study was so closely entwined with the referral coming into CAMHS. In the interviews, parents in particular told us actually just how much they appreciated, just the acknowledgement that the referral had been received. Referrals aren't made lightly. There's often a lot of debate and thinking about should, from professionals making referrals, should we make a referral? Is this the right time to make a referral? Many of our services in fact do also take self-referrals. But again, it's done with quite a lot of thought. And really referrals to CAMHS are usually only made when things are at their worst. But actually that acknowledgement that the referral had come in, it will be looked at, it is being considered. In the meantime, while that's happening, there's this piece of research going on where we're trying to understand the impact of does additional information make a difference to the care journey? And we of course had to acknowledge that if people want to take part in the research. It did hold things up a little bit, of course. It did have to put the referral on hold while the questionnaires were completed and then for the 50 % that toss of the coin that got the dauber. But again, we made sure it didn't hold things up unduly. it was a maximum of 10 working days, so two weeks to do this. And then the information was ready for the triage team to decide.
Mark Tebbs: I think what you say just really rings true to me is kind of I think to, you know, the referrals normally come in at a point of people feeling quite desperate for support and lack of acknowledgement that kind of like it's in the system, it's being processed it really compounds to kind of people's distress, I think.
Prof. Kapil Sayal: Yeah, yeah, is that not knowing that sort of uncertainty? And that can happen at different stages because there's that initial wait to get the outcome of what's going to happen with the referral. And then, of course, some people are signposted elsewhere. But what does that mean? Do you have to start again? But even if you are accepted for an assessment, there's then the next wait. There's the next waiting list to be seen. And these, are often really long waits.
Mark Tebbs: Yeah.
And you mentioned that you also talked to the clinicians and service managers. So did you get a sense through those conversations around why it didn't impact on clinical decision making?
Prof. Kapil Sayal: Yeah, absolutely. And of course, in the ideal world, one would go back and be able to look at things again retrospectively. We carried out these interviews before we knew the main findings of the study, i.e. before we knew what the impact was. But we had that very open mind because obviously you don't know when you're doing a trial like this what the end results are going to be. And so we were really keen to explore what things helped, what things were helpful, what were the facilitators, but also potentially what were the barriers to be able to use something like this. And there was a discrepancy, a difference in views from clinicians, I suppose, depending on where they work and sit in CAMS. So those that are based in the triage teams, they're often called things like single points of access, actually did find the additional information very valuable

and reflected that if something like this routinely accompanied the referral, so perhaps if it was coming from the referrer too, that would be something they would take on board, have a look at, and it was accessible for them. And I said it did make that slight difference to referral acceptance, but it could be because also again, it could have been working in either direction and helping to make decisions around perhaps CAMS isn't the right place. But further downstream, often, it was quite a long time before the assessments took place. the CAMHS are often quite big teams in terms of that they're very broad in terms of their makeup, in terms of the range of different professional backgrounds of people working in CAMHS from a range of different types of therapists, nurses, psychologists, doctors, and others. It could vary of course in terms of who that first appointment was with, also most of the young children, young people any particular clinician is seeing weren't taking part in the study. And of course, even if they were taking part in the study, was only a 50 % chance of there being a DAWBA report as well. So actually some of the clinicians we interviewed said they were looking out for it, but they just didn't come across one. Because in fact, nobody on the caseload was there. But we also think that others were missed in the sense that clinicians are very busy. There's a lot of, I suppose, mandatory, compulsory things, must do things that they have to do. And actually, electronic records aren't necessarily the easiest place to navigate. On screens, there are lots of different tabs. And then this is one extra bit to look at. So it may well be that it was missed. But then I think also perhaps more broadly this issue about conceptual frameworks. And at no point in part of this trial were any of us suggesting or thinking that a diagnostic assessment or a diagnosis is the be all or end all. It's just one bit of the jigsaw, one piece of the jigsaw think about and put into the context of more broadly what's going on, in terms of what else is going on in the child and family's life in its broader sense, what things may have contributed to the difficulties, what things might be keeping those difficulties going and thinking then about what might be the most appropriate steps forward. And the term sometimes used for that is formulation. So you're thinking about that in its sort of broadest, richest sense. But certainly as part of those interviews, was amongst quite a few of the politicians, a very strong view that they much, much favored formulation over diagnosis and would rather take a formulation only approach. So I think there's also that sense that for some, that diagnosis actually isn't thought about at all. I mentioned that there's that sort of second bit of this story. this is sort of the sad bit of the story actually is when following up these children and young people over time, over the 12 months, many of them didn't do well, unfortunately. And even 12 months after the referral came into CAMHS, there was quite a significant number that continue to have ongoing mental health problems impacting on their day-to-day life. At least around a quarter where young people were describing ongoing self-harm. So I think it does raise the question about whether current structures, current models are working as well as they ought to.
Mark Tebbs: Yeah, yeah, the psychiatric mobility report came out in June and that kind of showed that increasing trend more young people having mental health problems. You mentioned self harm, suicide or agitation, know, so that trend is definitely there. Do you have a view around what we can do from a kind of policy or kind of commissioning or investment perspective to start address that.
Prof. Kapil Sayal: Yeah, we're very much hoping that the learning and the insight from Stadia really does help to shine a spotlight on this. as saying, think we do think it's some of the richest data available. And for quite a while now, we've been discussing and sharing our findings with a range of people, so the range of national commissioners across the UK, as well as more locally, to have a think about current models and structures too, because as you rightly say, Mark, the need has increased hugely. And although broadly access to help has also been supported and invested in, and particularly with some of the models such as mental health support teams in schools to try and get the right help at an early stage. And that remains crucial and requires more data around that to show, to look at and to hopefully demonstrate that effectiveness so that children and young people are getting the right help and right support in the right place as early as possible. Because the kind of the primary care to secondary care model, that very traditional model, I guess, applies across lots of healthcare. So that model of you go to your GP and your GP makes a referral if needed and necessary to the specialists, that's usually sort of hospital or secondary care based, really isn't enough for something like mental health in children and young people because just the numbers of the population, as you rightly say, are increasing. There are many children and young people with clinically significant emotional difficulties and disorders like anxiety, disorder, depression, and OCD, that sort of model isn't going to help. So it's really thinking about best thinking about identification of those needs early. And that's where something like the DAWBA potentially still could have utility, because what we did find is that young people and parents like doing it. We, at the start, back in 2018, 2019, we weren't sure about that. For the trial, we set up options for it to be done either as an online completion or as a telephone, as a telephone interview with someone. And at the beginning, we thought maybe up to about 40 % might want it done by phone. In fact, it was less than 1 % wanted it to be by telephone. So young people and families, very happy to do this online like they do and like we do in so many other areas of our lives. We do so much online in terms of measures, completing forms and things in that way. So it also shows the importance of thinking online and digital ways of collecting information, feedback, sharing information as well. But think also going forward, thinking about how the role of digital interventions and their place.
Mark Tebbs: Yeah, yeah, I agree. it feels like, there has been more investment, more people are being seen, but it's just not keeping up with with the enormous demand that there is. So we're coming towards the end of the podcast. I'm just wondering about whether you have any more research in the pipeline, whether you're aware of any kind of like studies that are carrying on the themes that we've discussed today.
Prof. Kapil Sayal: Absolutely. So the main study of findings are relatively hot off the press in terms of that they were published earlier this year in the ACAMH journal, Journal of Child Psychology and Psychiatry. But we're also taking the opportunity to try and unpick and better understand firstly, some of the data we've already collected. So what we're really interested in is getting a better sense of who gets seen. So which children and young people's referrals were accepted and for whom that their referrals weren't accepted, who gets help? So again, which children were offered and received intervention versus those that weren't and who gets better, who improved? So to get a better sense of that in terms of how much that might relate to perhaps background factors in terms of that things like children's age or sex or ethnicity, whether it's those sort of things, or perhaps more around their mental health difficulties as well. But beyond that as well, we're also taking the opportunity to do a slightly longer term follow up as well, because we've got such a rich source of data within Stadia. And as you're probably aware, as the NHS also does collect data on referrals and use of services more generally. So we're looking now to link the data we've got in stadia with what's called routine data that the NHS collects, particularly in terms of further referrals to mental health services. And of course, some of our young people who took part in stadia, they were 16 or 17 at that time, now coming up into their late teens, early 20s. So some of some of them may be seeking help from adult mental health services, but also are able to look at use of other services such as attendance in A &E or hospital admissions as well. So again, looking at what the wider resource uses there potentially.
Mark Tebbs: Such vital, timely research to really understand what's going to happen, all those kind of waiting lists and who's getting the support they need and when. So Kapil it's been lovely speaking to you. Is there a final message you'd like to leave our listeners with?
Prof. Kapil Sayal: Just a huge thank you, course, Mark, to yourself and the ACAMH team for the opportunity to share our Stadia findings with. in terms of with these Stadia findings. just to highlight that sometimes research studies can throw up unexpected, unexpected insights in this way. But we're very much hoping that this what we've learned from here and particularly the very, very generous contribution of the children, young people, parents taking part acts as that string string board to really make a difference in terms of our knowledge and learning, but how future services should be funded, set up and run so that really can make a difference for future generations of children, young people.
Mark Tebbs: Brilliant. Thank you so much for this conversation. It's been a really interesting discussion. So I hope you've enjoyed it. And if you've enjoyed it, then please leave a review and a rating on the platform that you're listening to. Thank you very much.
Prof. Kapil Sayal: Thank very much Mark, it's been pleasure.