Thank you very much everyone, I think we can start now. We don't know if we're going to have some people come forward a little bit last. It is very interesting to be here. I would train myself. My name is Rupal. I am a campaigner working in Wales with students who are cultural learners. I am here with my colleagues, Aruna Sani, who lives writing next. He is also a campaigner who works with cultural learners and we have Paul Shanahan who is campaigning efforts. We are very happy to be here and talk to you today about some of the associations we take on in our service and the Paul research project, the next writing studio. So, hopefully at the end of this day you will have a little understanding about all those things. We're going to talk about... So, it's about two parts. So we're going to talk about stomp, which is what we've done within the UK, and then we'll tell you about how, hopefully, at the end of this session, we can understand how stomp can help you choose psychotrophic writing in cultural learners, and increasing people's different lives through relational working and connection and change. We are also going to tell you about factors which helps you use stomp within your services, safely and effectively. We'll do it with some nasty borders at the end. I thought it was also useful to say something about services in Wales, because we know that services go from place to place and country to country, and we were a specialist service working in a community with students I was hoping, in this community, if there is anyone here working with students with students with students or developmental organizations. So we get some people here in the UK too, and we get any man left. And for people, I'm sure people will know, but in terms of what students are with students. So students with students are produced by significant behaviors in developmental and regressive behaviors with the IQ less than 70, so here are two common behaviors after the period of 100. When I say regressive behavior, I mean the combination of general, social and negotiation skills which are taught and presented by us every day. And we want the students to be with students who work with us, so as I said, we are a social group and a broad disciplinary discipline, in Social Wales, we get to be involved with a few learners within the team. So, after behaviors and discussion that are here today, we also get Psicology, we have students with disciplinary students working with us, and then we have the therapies, so, care therapies, expectant and safety therapies, physiotherapy, and we have dietetics as well. We think about the truth to stump, we know that in Wales there are between 30,000 and 35,000 learners in Wales who get ordinary ordinary writing or ordinary discipline every day, but those people do not get a diagnosis of ordinary, for example, or effective discipline. And what we know about the group of people is that they clearly write ordinary doctors to help manage challenging behaviours. We also know that those doctors, once they wrote, were written in the world and were still writing without ordinary writing and thinking about does that person need that doctors. And thinking about why we're talking about STOMP today actually a little bit. I'm not sure if people had heard of Winterbourne View. I know we get some people in society from the UK, but Winterbourne View was any common behavior in Wales. And he looked at reviews with disciplinary discipline and incredible and incredible behaviors. There was little market behavior through television programs with marketers within that school, within the school, I'm sure. And I don't know if anyone had seen a market of what's going on at Winterbourne View, but it's really really amazing. They were showing behaviors there, they were behaviorists being informed by an office. There was a market there who have had a spiritual to see. There was a market there which has been inspired by an office and someone was quite a bit about what was going on. They were trying to get out of the whole flurry to be able. So some very good example of safety and production. So that was very important. And that is being said for real behavior from the behaviorist services and reviews that are behaviorists that are really, really, amazing. That also showed that behaviors were used incredibly and people were chemically inspired. Now on this screen, we have young men, I don't know if everyone knows, but that was Oliver McGowan. Oliver McGowan was an 18-year-old man with autism, a learning disability and was diagnosed with epilepsy. And now he was inspired to the hospital after behavior. And being spiritual and being inspired for the spirit, it was an amazing environment, it was behavior and behavior and the discussions were spiritual using the antipsychotic olanzapine to help inspire him. So they didn't use it as an antipsychotic olanzapine. He didn't know he was experiencing that. Now, the olanzapin had been brought, at this moment in terms of the decisions from her family to have behaved with that behavior very much in the world. And, unfortunately, their decisions had come on live uses. Oliver was going on to experience malignant syndrome or neulectroectum, which we know we are antipsychotic behavior which is an unusual but important behavior. It went on for 17 days at ITU before they, amazingly, came. When those behaviors occur, about her future, they seemed the future could be about her future and there were many places when he chose the communication, when people didn't hear and when he really showed that there was a national seriousness and other seriousness of people learning environment and other concerns. The good thing to come out of this is that we are having the special gathering at Oliver McGowan University, therefore this gathering is special and it is special for the health and social staff, and it is developed and delivered with students with planned discipline with or without autism and Oliver's mother who talks about what is happening to their ways and making sure this does not happen to others. So now I have given you some truth about our service and what we've done and some of the things in the service, and I hope Aruna will tell you all about stomp. Hello everyone, as Rupa has introduced me, I am Aruna and I am also a schooler of schoolers in planned discipline. I think, after my friends who have come from the UK, has anyone else heard of stomp? Oh, lovely. OK. Is this something that is also in the UK? Fantastic. So, it's good to know he's got over the pound too. So, is the society to stop the thought of people with learners learners, autism or both, with psychotropic thoughts. And as Rupert was telling you, the resources that happen in different environments use the minds incredibly. This program was started by the National Health Service in Wales in 2016, in order to try to write and write people's thoughts. And it is obvious to improve people with learners learners and also autism by using using incredible thinking as an activity of training, if you like, people to train them incredibly. So, in Wales Wales, the Stomp project had been started by two pharmacists, two candidate pharmacists, therefore, the choice I appear there, Eister Navigate, did a project with other pharmacists. And, between the two pharmacists, they remembered an incredible area of writing for people with learners learners and also autism. On the project that started, they were 1,000 people who hope to campaign their pharmacists, but the number has been chosen to between 700 people, so they are able to deliver for 72% of their campaigning, which is in terms of 75% of the people available to campaign. And 445 pharmacists were expected throughout the study over 26 years. During the time, there were 21 campaigns over the years, and of that, 17 of the pharmacists have been recruited over the years. And that has been done since the time of pharmacists, and most of the pharmacists that are actually used, and it's quite watery. But it involves a liability of £85,000, and then responsibility from campaigning life for most campaigning for the pharmacists. So the responsibility of the campaigning responsibility was over the campaigning life drawn by one of your American pharmacists related to Todd Nesbit, who has worked on ways to work on changes and responsibility of interesting writing resources. i would say in the last day we will go through that right now, that is less out of kilter because of jet milk right now. So the important thing there is the writing pressure. And this is the thing we look at when we work with people. So, in fact, when they write and when the writing rhythm is what will they do? And then, what we look at is the difference between them. So, we are looking at the moment, how difficult they can be, and what their writing rhythm will be. So, this is just a never-ending room, but it shows you that the difference between the two is the writing pressure. So, that's the responsibility for them to use written, or the most of that is the most responsibility to go and write. because the biggest network, i believe is the biggest network, is the biggest network, is the biggest network, Moving on to the particular study we're doing, we're visiting which databases. This is a public report in the UK newspaper. We are looking at public reports from 1900 to 2021. We divide into ways of spiritual quality and the spiritual quality, especially what we want to differentiate from the network is, we use 20 studies looking at amazing writing with a total of 8,000 people across all studies, 12 studies that look at incredible writing writing writing with a total of 2,500 people through all those different studies. I've very recently achieved from the different incredible writing across all different studies, so 40%, I'm just under 40% night waking. Difficulties falling asleep about kind of 18.6 and just a not kind of described 30.9. So when I say not otherwise described, sometimes they just ask them, do you have difficulty with sleep? And it would be like yes or no and that sort of thing. And they would ask that to such a wide cohort of people. Bearing in mind there's about 8,000 across all of these different studies that we've summarized into this review and we've weighted it for a number of people in the studies as well. So interestingly, we then looked at sleep-related breathing disorders. The average prevalence across or the mean prevalence across all of the studies was about 20%. So that seemed to indicate that about 20%. Now, I'm gonna go into a little bit more detail on that. The range was about 0.5 to 100%. So that gives you pretty much 0% accuracy. It kind of tells you, well, it's somewhere between zero and 100. Okay, that's helpful. But actually, when you then start digging down into it and looking at the quality of that evidence and looking at kind of the information, you'll see that within Down syndrome, yes, the range was 0.9 to 100%. But when you only look at good and fair quality studies, it was 100%. So 100% of people with Down syndrome when they use polysomnography or when they actually measured it appropriately had an apnea-hypopnea index over kind of 15 or something along those lines. So it just gives you an idea of kind of the scale maybe in certain populations and perhaps why the national guidance in the UK is highlighting this as an at-risk cohort. Prader-Willi syndrome, again, ranges between four and 42%. Good quality studies between kind of 23 to 42. So again, you're still looking at a quarter to a half of the people with Prader-Willi syndrome experiencing sleep-related and breathing disorders. And Rett syndrome, again, somewhere around kind of 34, but again, it was poor quality. So it probably almost falls within that kind of 0.5 to 100%. But certainly Down syndrome, potentially Prader-Willi syndromes are ones to perhaps consider as more kind of high risk of having sleep-related breathing disorders. So all studies that we found that used objective measures did have a much higher prevalence. So when they did use actigraphy, before I start, oh, actually, are people familiar with actigraphy? Are they, yeah, okay. Have people used it in practice at all, or it kind of varies? So actigraphy and polysomnography, again, identified, again, a higher prevalence. So it's, again, those studies with higher methodological quality, I would say, generally identified much higher prevalence among this kind of population. Only 42.9% of the studies included sleep measured in a reliable way, and many relied on caregiver reports and questionnaires that weren't validated. So that's obviously a big issue, I think, within the kind of the literature generally. Again, Rett syndrome, Prader-Willi syndrome, in order to experience kind of excessive daytime sleepiness as well, actually, that came out. So again, that might be indicative of sleep apnea and kind of its subsequent impact on the kind of daytime. And studies investigating disordered sleep and sleep-related breathing disorders were not clearly screened. So it's interesting that a lot of the studies that looked at disordered sleep and all of those, so we're talking about kind of the 50%, 60, 20, with all of those disordered sleep, actually, when they didn't screen out sleep-related breathing disorders, how do we know whether it's not that that's actually causing all of those problems during the night, and then subsequently during the day? So again, studies really aren't looking at this and considering it very clearly, which is something that we thought would be quite helpful to think about perhaps in practice, and maybe how you're screening for it. Are you just asking a care, or are you asking a parent, do you think maybe they might be snoring during the night or whatever? And actually, is that a really rigorous way of trying to pick this up in this population? So it might be something to perhaps consider. I'll move then on to the BEDSIDE study. Now, it stands for Investigating Behavior Evoked by Decreased Sleep Quality in Adults with Intellectual Disabilities. You can tell we really struggled to come up with an acronym for this. So bear with us. So yeah, it was really to understand the experience of disordered sleep among people with an intellectual disability, and to really understand that a little bit better. But really what we were looking for was, well, what's the impact? What is the impact of these different sleep parameters? And I suppose, why should we look at these? What are the ones that really matter? Evidence did suggest that there is a relationship between sleep and behaviors that challenge, but so much of the literature highlights, well, what's the causality? So is it the behavior that's causing the disordered sleep, or is it the sleep causing, actually, the issues with behavior? Again, I commented earlier about the complaint. Well, what does that actually look like? So we wanted to actually talk to people as well to find out, well, how did they describe it to us? How did they tell us about what that complaint kind of looks like? And there is a bit of literature, papers published a couple of years ago that highlighted that perhaps an adapted diagnostic criteria for insomnia might be required to consider with this population, because, and that should be correlated with kind of objective and subjective accounts. So thinking about how do we measure it accurately alongside how they're describing it to actually think about, so effectively, that's what we did within this study. So we chose a mixed methods approach. So we wanted to use objective measures alongside subjective measures, mainly because when we're thinking about interventions later on, you gather a lot more evidence for designing something a lot better when you're using mixed methods, and you add valuable kind of insights that the problems and potential causes when you do this type of approach, which hopefully I'll be able to convince you of. We had three different main kind of research questions then. So we wanted to identify which sleep parameters predict behaviors that challenge, and then the strength of that relationship. We wanted to understand how sleep parameters relate to the experiences as described with people with a learning disability or intellectual disability and their caregivers. And we wanted to identify whether there was a relationship between sleep and the caregiver quality of life as well. So it's often mentioned in the literature, kind of, you must have known parents who have kind of said, I'm absolutely shattered. I'm just, cannot cope with this. He's waking up at three and not going back to sleep, and I have caregiver responsibilities, or the carer's complaining. But so we thought it would be interesting to look at their quality of life if that individual had more sleep difficulties. Is there a clear relationship there that we could highlight? The way we did it was we used actigraphy and we also had a sleep diary to corroborate that information, or in some cases, when we wanted to work out sleep onset latency, we used a combination of sleep diary and actigraphy. We also then kind of asked the participants and the carers some questionnaires, and that was done in the quantitative side. Within that, we used multi-level modeling. So we'll kind of explain that in a little bit and what that looks like in order to look at that causal relationship. And we'd use a couple of correlations as well with some other areas and Pearson correlations. On the qualitative side, we interviewed seven people with an intellectual disability, five paid carers, three parents, and a partner of one of the people with an intellectual disability, and that was across 10 interviews, so some of them in different pairs. So sometimes the person with the learning disability on their own, sometimes with the family member or carer, or sometimes just the parent on their own. And with that, we just used reflexive thematic analysis to interpret that information. The idea then was that we would have the quantitative, qualitative, and then pull it all together to think about actually really meaningfully interpreting that information. Again, looking for comparing and contrasting and integrating all of the information and making it relevant to the literature. I don't know how much of this I'll go through if you're familiar with using actigraphy, but this is just a snapshot, perhaps, of one of the actigraphy information. You can see the person being active, inactive, whether they may be daytime sleeping, whether they're asleep, and then if they're just not wearing it at all. And then we would interpret it by putting in kind of when they're likely to fall asleep, when they were likely to wake up. And then what we did was we also mapped it onto the circadian rhythm sleep-wake disorders. So multiple of us looked at the information to look at, well, how many of them map onto these different sleep-wake patterns and sleep-wake disorder patterns? So what we ended up finding was about 14. So we used actigraphy with about 27 people in total for this. This is obviously a bit of a limitation. We wanted to get closer to probably about 50, but I'll go on to that in a little bit. So about 14 didn't have any. They seemed like they followed a very set pattern with their sleep. Six people had delayed. Two people were advanced. There was nobody in the non-24-hour or regular. And we found about five people that had these really restricted nighttime sleeping periods and then would sleep for an enormous amount of time in the next day and then might have two really restricted. And we think about it in terms of that sleep death and that kind of circadian rhythm. And actually you can see how that sleep death will then kind of accumulate and accumulate and accumulate and then just shatter and have a really long sleep period. And then maybe the next night that would then subsequently have an impact. So it's just this repeated cycle that some of the people went through throughout. So the different sleep parameters that we looked at when we were interested in kind of understanding the relationship between sleep and behaviors that challenge. We looked at sleep duration, sleep efficiency. So that's the percentage of time when they're in bed asleep. Daytime naps, the count and duration. We also looked at sleep onset latency and the number of nighttime awakenings. So to begin with, we just wanted to look first of all at, well, is there, was there a relationship between kind of the sleep efficiency and sleep onset latency across those people who did have behaviors that challenge and those who didn't? So is there a difference really? And we initially did find a difference. So we thought, okay, it's worth doing the more complex analysis kind of moving forward. And what we did find was the median sleep efficiency was lower for those who had behaviors that challenge. And similarly, the sleep onset latency was greater for those who had behaviors that challenge. So you can see sleep onset latency is about 10 minutes for those on a median of 10 as opposed to a median of 36 for those who had behaviors that challenge. Although the effect sizes were small, it's just worth noting. But we did decide to move forward. We did suspect that the effect sizes were small just because of the sample that we had. We had 27 people. So this just gives you a little summary really of the analysis that we ran. So we had 27 people with 441 days and nights of activity using the watches. And what we wanted to do is we wanted to look at, okay, so first of all, does the day affect, the nighttime before affect that day's behavior essentially? And that was the level one. So across all of the different people, does the night before affect behavior? We also then wanted to look at, well, are there then differences across people? So actually, if one person has much longer sleep onset latency, does that then predict whether they have behaviors that challenge as opposed to maybe somebody who has a shorter sleep onset latency? So that's why we looked at the two levels. In the kind of models that we developed, so the first model that we developed was what's referred to as a random intercept model. And that's looking for, is there clustering? So what you need is, in order to look at this level two of different people, you need to say, well, are there differences across people? And are they significant? So that's what we did with that model one. So we saw, yes, there are differences in behaviors that challenge across all of the people because we didn't make it a requirement that they have to have behaviors that challenge to be included in the study. It would just bias our sample. So we just thought it would be interesting to ask everybody. So there was clustering in the data. There were some people and there were significant differences across them. So then we added in, so this is referred to as a buildup model. So what you do is you keep adding layers to the model to see which is the best model fit and then which one then is a significant predictor of behaviors that challenge. So the level one predictors are added in a model two, level two predictors in model three. So as you can see from the previous, we added first level one, so the nights and whether they affect the behavior, and then level two, the different people. So we then wanted to look, so model four, we thought there's probably also potential lag or cumulative effect associated with sleep. Sleep isn't just the night before and suddenly there's behavior. It doesn't work like that. So we thought, well, what would happen if we looked at maybe two nights before and then three nights before as well? So we looked at lagged effects for all of the sleep parameters except sleep duration in which we looked at a cumulative effect. So we thought if somebody has maybe a short sleep duration for multiple nights, does that then predict behaviors that challenge and look at that kind of likelihood? So they were the different models and we ran model two to model five for all of the different sleep parameters separately. So there were quite a few layers of kind of analysis that we did. What was quite interesting was that we only found one sleep parameter that actually was significant and that was sleep onset latency. So what we ended up finding was the sleep onset latency. Now it mentions here, so you can see SOL model four at level one. So I'll explain that in a little bit more detail. So model four was the lagged effect. So that meant that if I go back here, what you can see is within level one, so we're only looking at the night before. So it's not just the night before, it's the night before that. So it's two nights before their sleep onset latency is likely to predict behaviors that challenge in a couple of days. So that was the significant predictor of behaviors that challenge. Now we found it for level one, not level two. So what was interesting from that was that with the sleep data, we did what's called mean centering. So it's essentially a change in their sleep onset latency that would then be more likely to predict behaviors that challenge. So if somebody is just ticking along with their usual sleep onset latency, it wouldn't cause any, but when it then was longer, it wouldn't be the next day, but it'd be the day after that. You're more likely to see behaviors that challenge in those patients. Level two wasn't a predictor, meaning that if one person, for example, had a longer sleep onset latency than another, that wouldn't mean that they were then more likely to present behaviors that challenge. It was only within that individual, if they were then changing more, or they had a much longer sleep onset latency, that we found that that relationship held. So that was the quantitative side of the analysis. So that was really the first thing showing us that actually there is a sleep parameter that could predict behaviors that challenge, and it was a causal relationship that we found. We then wanted to interview people, but we wanted to get a more interesting cohort of people. So we looked at the people with a learning disability who either could or didn't report difficulty with sleep from the outside. So they would either say, yeah, I think I have an issue with sleep, or maybe I don't, at the very outset of the study. And we wanted to maybe talk to a number of people who said that they felt that they did, or people who felt that they didn't, alongside the carers who felt that they did, and the carers who felt that they didn't. And we ended up, I think the people who participated ended up having three, three, and four. So you can see a kind of a nice mix of the different people in the different categories. We didn't have anybody who, where the family said they don't have an issue, and the person with a learning disability said, oh no, I definitely have an issue with sleep. So it was just interesting that usually if the person said they have difficulty with sleep, the carer's usually in agreement. So I'll just jump straight on to the themes, really, that we identified from this. This was a table of the themes that we identified from all of the interviews. I'm just gonna first talk about the ones outside of the main block. They were kind of reduced sleep duration and night waking. And they really didn't seem to have much of an impact, similar to the quantitative side. They just didn't, they weren't mentioned by people as causing an issue for people. And similarly for night waking, they thought, well, night waking kind of happens, it's not a problem, they just go back to sleep, they're just going to the toilet or doing something else, and they're then just resettled. So those two really didn't seem to be much of a, cause much of an impact. The key thing, really, when we looked at the daytime impact of poor sleep, the key areas that they focused on were activity and mood. So they were kind of saying that these were the two kind of key areas, and I'll talk about those in a little bit more detail. There was also care fatigue that was coming from this. So when they had caring responsibilities at night, they were talking about being so fatigued because of those responsibilities that they had. When we look on the left-hand side, you can see daytime sleeping. Again, that was probably linked to that activity. So they were finding that actually, when I was sleeping during the day, I couldn't do the activities I wanted to, and I was just so tired. But the other aspect then was the sleep onset routines. So some people had really maladaptive sleep onset routines. So, oh yeah, I watch my Disney late into night, or I kind of do all these things at night that I have my huge meal, and then I try and go to bed, or I'm kind of snacking all night, and I'm not sleeping. And there was also kind of a bit of anxiety. So a lot of the people, some of the people that we interviewed had quite anxiety-provoking issues that were going on in their life that then was inhibiting them to kind of go to sleep in the first place. So it was all around those kind of sleep onset routines, which kind of married up with some of the quantitative side that then caused some of the impact. On the right-hand side, we see some of those kind of mediating factors that then had an impact as well. So differential understanding, people found it really difficult to articulate what that sleep difficulty was or what that actually represented. And it ended up feeling like I was almost having leading questions, like, could it be this or this? Was it this or this? And it was actually really difficult to tease out what they were, and even with the care of facilitating, it was still quite tricky. And the care involvement was key, but I would exercise with caution because we were kind of asking carers all of these questions, and they were very, very helpful, and they'd say about their involvement in implementing interventions. However, when you then looked at kind of measurement and trying to understand the sleep better, the carers, even themselves, openly said, well, I don't really know. I'm in bed, so I have no idea when he's falling asleep. So if we think about that sleep onset latency aspect, how are they going to know whether that's a problem or not if they're not there observing or measuring or we don't have anything in place? Healthcare involvement was also mentioned across a lot of interviews, and actually what they were saying was that they had really poor experiences of seeking help. A lot of them may have ended up on kind of Zopaclone or some other medication. It was taken away, but they didn't really understand why because they were like, well, it helped me sleep. Why did you take it away from me? And there's kind of other aspects that came up, or they felt that maybe GPs didn't really help or refer them on to kind of get any help. So that daytime impact aspect, these were some of the kind of things that were mentioned. They mentioned kind of dizziness, headaches, feeling run down, which is not uncommon kind of from you look at kind of some of the literature and kind of people feeling run down when they get poor sleep, it happens. So I wasn't surprised when people, when that kind of was mentioned. The reduced activities came out as a really significant factor. Really, people were mentioning going on holidays. They were totally out of routines and they just couldn't go through with their day. They couldn't do those things that they really wanted to do when on holidays or just in their day-to-day lives. And they also talked about kind of their mood being affected and this is something that I felt was a little bit reductionistic when we looked at the quantitative side because we just looked at behavior as a challenge. And I think going back, I'd almost want to maybe look at maybe stress or kind of mood, maybe a little bit more in detail and actually kind of understand that a little bit because people really described getting really angry so quickly, feeling much more stressed and being just really unhappy when they weren't getting good sleep. The sleep onset habits that I kind of referred to earlier, they had a lot of maladaptive coping strategies. So when they did have something quite stressful in their life going on, they'd find to try and distract themselves at night by kind of watching TV or trying to do something else which then would subsequently affect their sleep. The daytime sleep, again, reduced daytime activities. The sleep duration and night waking, as I said, limited concerns were really mentioned. They said, oh yeah, I do it, but it doesn't really matter. They didn't feel like it was much of a problem similar to night waking. The differential understanding, I found we did have to use a lot of closed-ended questions for people. Again, it's not uncommon for people with a learning disability when kind of assessing something that we had to, and we had to rephrase, kind of the caregivers had to rephrase quite a lot when we were going throughout it and give very concrete examples. Well, what are you doing? What did you do? Okay, I watched TV and I did this and that's why I wasn't sleeping at that time. Or, oh yeah, I know when I woke up I was having that cake and I was then doing that and I had my coffee in the middle of the night kind of thing. Some of the participants could actually use metaphors. So, one described it and I remember quite well where they kind of said, well, if I'm thirsty, I have a drink. If I'm sleepy, I just go to sleep. So, and I'll do that whenever. The caregiver involvement was very much, they described around kind of facilitating the assessment and then implementing interventions, as I mentioned. But again, just considering the reliability and healthcare involvement, again, very limited positive experience. And I did wonder whether that might also just reflect the evidence base for interventions for people with a learning disability. It is generally quite poor. So, there's not good quality evidence for interventions for people with a learning disability around their sleep. So, pulling it all together, we just wanted to look at kind of those three questions that I asked at the start. So, the first one was about kind of sleep onset latency seemed to be the one that predicted behaviour as a challenge. I would suggest considering measurement and having kind of caution around caregiver reporting. And just purely down to, I think they even mentioned it themselves throughout kind of interviews, the idea that some of those caregivers would, they kind of highlighted that actually they can't see when that person is falling asleep. They don't know how long they've been sleeping for. They're not able to actually articulate. And when I say kind of consider measurement, I think that was one of the key things around thinking about actigraphy and using objective measures. And then how the experiences relate to sleep for people with learning disabilities and their caregivers. I think one of the things that we were thinking about afterwards was just thinking about kind of some sort of adaptive anxiety management strategies that kind of impact, that reduce that impact with sleep onset latency, because that seemed to be the big thing that kept coming up just when they initiate sleep or how they initiate sleep in the first place. And whether there's a relationship between sleeping and caregiver quality of life, I've not referenced yet, but I think one of the things that we did find was the quality of life was reduced for the caregivers. So, and we asked a very specific questionnaire and it was mainly around their environment. It wasn't their other kind of areas of quality of life. It was just around their environmental quality of life that they felt was significantly affected when sleep was disrupted. So, I suppose diagnostic criteria maybe might be something to consider when looking at insomnia. Maybe she would be thinking about the impact for caregivers as well and their kind of caregiving responsibilities throughout the night. So, I suppose next steps in what we're thinking with all of this. I think for patients with a learning disability who are unable to report, caregiver reporting may not be reliable enough. So, maybe we have started using actigraphy in our service, and we found it incredibly helpful. This is something that we found not only just for tracking sleep, but also tracking activity during the day. What you find then is kind of maybe they're really not doing very much during the day and we can then kind of actually target that or think about how they're going out and doing more on certain days. But it's also helpful to kind of look at their sleep rhythm and their patterns. Again, I think that we need to be thinking about kind of designing and evaluating interventions, focusing on sleep onset and what that might kind of look like and thinking about that kind of diagnostic criteria, as I've mentioned already. So, as I said at the start, we have a couple of case vignettes around sleep, which I thought would be helpful to share with you, just to kind of show you some examples from our kind of clinical practice of actually what do we see. And maybe it might help you to reflect back on kind of some of the areas around maybe why people feel a bit frustrated when seeking help around kind of their sleep. One of the things that I maybe didn't touch on too much was I definitely got a bit of a sense of learned helplessness from some of the carers. They definitely were kind of seeking help, but really not getting some of the answers sometimes, or they'd have to go down so many routes. And you'll see that even through the case vignettes that how many different things have to be offered and then eventually coming to a clear kind of conclusion. So, the first is of a male who's 56 years old, severe learning disability, communicated with Makaton in gestures, limited receptive language and living in a residential care home with 13 other service users. So, the presenting issue was reported as having night terrors by the carer. So, that was what the referral effectively came in as. When we went out, actually, it was really described as waking, coming out of bed, running up and down a corridor, screaming, crying and just appearing incredibly upset. So, the assessments that took place, where there was a GP annual review that happened, we used sleep diaries, and then we just went out and actually just observed the environment to figure out what's actually going on, to see what might be causing this or what might be some of the factors. The GP initiated Zopaclone for a month to see whether that might have any effect. They also identified that, actually, he had witnessed a crime about 20, 30 years ago, so our counsellor thought, well, let's maybe offer some counselling. We also tried an alternative method of communicating. Maybe he was trying to get the caregiver interaction at night time. So, we thought, well, let's put a kind of a switch in place that he could press, then the caregiver would come much quicker. So, it would reduce the need if that screaming and shouting was just a maladaptive way of requesting that attention and interaction. And then a little bit later on, one of my colleagues went in and just spotted, do you know what, his bedroom is directly opposite where all of the laundry is done. There was a room just opposite him. And because there were 13, 14 people living in that home, the carers were so busy during the day, they had to do it all at night. And it was just such a simple change of stopping the laundry at night and just doing it during the day. So, in the end, the outcome, the Zopaclone counselling did almost nothing. We stopped the laundry and the shouting and distress just completely stopped altogether. So, it's just really, it is about kind of looking at that environment and thinking about what might kind of happen. And although he still wakes sometimes during the night to use the toilet, just goes back to sleep, no problem, no distress, no shouting, no upset. The other case is about a gentleman who's 66 with mild learning disability and living independently. And this is one of the ones that we thought was a bit more interesting because I suppose it was one where, at the very start, we weren't using Actigraphy, we weren't tracking sleep like this. And it was kind of one of the first ones that we thought, maybe we should, because none of us can go in and find out when he's sleeping. What is he actually doing in the night? What are the kind of patterns associated with sleep? So, he's presented as sleepy during the day, irritability causing disruption to neighbours and was really irritated with caregivers. So, we did some observations. We used Actigraphy, you can see the graph underneath. And we had an interview with the person, the caregiver, about routines. So, you can see a couple of times during the night where he's waking up. And you can see there's a kind of a light bit of yellow there. And what that ended up being was he's just watching TV in the night whenever he's waking up and he's watching movies. And because he had them in his bed. So, essentially, when he was in bed, he would just throw on his movies and watch those throughout the night. So, what we ended up doing is with a lot of persuasion, I cannot tell you how much persuasion, we managed to get another TV outside of the bedroom and another sofa so he could sit there and use it in his apartment away from the bed. And then try to shift him over towards using that at night rather than staying in bed and moving all of the DVDs and everything so that they were out there rather than his bed. So, he already had to get out to go and do them. And, as you can see, that night time kind of wakings dropped right down and reduced irritability and distress and sleepiness during the day. So, I might be finishing a bit early, but we'll take questions, obviously. But I think just some of the key messages, really, that I thought were maybe helpful for now to take away were that really it's just observations in the environment with objective measures are kind of what we're really focusing on at the moment within our service and how we're working. And we found it to be incredibly helpful for sleep, but also thinking about activities and a number of other different areas. I would kind of say just about considering variations in sleep onset. So, if people, for periods of time, might then experience longer sleep onset, maybe that's something to consider if you're finding that the people are presenting with more behaviour as a challenge. And when understanding the daytime impact, consider kind of the activities, physiological symptoms, mood, and just the impact on caregivers, I think, when you're assessing sleep and what that might look like. I suppose then, when assessing for sleep, I think the one thing I really haven't focused on is obstructive sleep apnea. Like, it is so much more prevalent in this population and something we really need to consider because that might have caused all of these issues in the first place. So, definitely don't rule it out. And thank you for your time and attending today. APPLAUSE So, I think we'll take questions. I had two questions. On the question about obstructive sleep apnea, I was wondering, in this population, what kind of success do you have using CPAP and BiPAP devices? Do you use dental devices? Because some of these patients have trouble tolerating those kinds of interventions. And the other question, in my area, in Missouri, where I practice, I have a devil of a time getting applied behavioural analysts. And, you know, recently, you know, some of it may be funding, but some of it, you know, one home tells me, well, the applied behavioural analyst looked at the patient and said, there's nothing I can do. There's nothing to treat here. I just have a suspicion about that. And I kind of wonder, you know, how does one go about trying to encourage, you know, good treatment from the standpoint of behavioural analysis and so forth? Yeah. Will I jump in? Let me start with the obstructive sleep apnea one first, in the first instance. Because that is something that does crop up as a concern that people have about kind of CPAP and interventions. I think, first of all, what I would say is, before you even start thinking about CPAP, and actually, if you are seeing somebody who is overweight and you suspect to have sleep apnea, the first thing I'd be thinking is, how do we reduce your BMI? Because actually, by reducing that, you can already almost reduce the apnea-hypopnea index. And just even if they drop from a 15 to a 5 on that, they're already getting much bigger chunks of sleep, and the daytime sleepiness might subsequently have an impact. So straightaway, I'd be thinking, maybe even if there's a dietician that could go in and work with the caregivers, or if there's somebody who can set up a kind of, we're going to do a Get Fit programme, let's do this, and really kind of get the caregivers involved in kind of promoting that. That's something that can have a huge impact. In terms of the CPAP, we... So there's two things. So there's the literature, which kind of highlights that you can do desensitisation programmes with it, and you can put things in place around that. I would say just we've probably maybe done it once in the past, I think, and it's had pretty OK success, but I think we don't do it that often, and I think it's probably because we don't detect it as often as I think we'd like to, being perfectly honest. What I've also found is it's really heavily dependent on the caregivers and consistency. So I would be really focused on, OK, this person does have CPAP. How are we going to help this person to kind of tolerate it, and who's going to help them, who's going to oversee it? Because actually, just little things that can have such a big impact would be just a reminder. Kind of having that... Or sometimes one person just comes to mind where whenever they woke up in the night, which obviously somebody is going to do if they have sleep apnea, they went out, maybe got themselves a drink, went back to bed and just didn't put it back on again, so the caregivers weren't there to kind of then say, oh, no, let's get it back on, I'll help you. Or maybe can they actually do it themselves? Have they actually been told how to put it on correctly and use it? So I think these are maybe certain factors to consider. But if you can get kind of behavioural therapists involved even to see whether they might be able to support you with kind of some desensitisation and frame it that way to them, look, we have a real issue with this, and can you help us kind of desensitise to this and get them involved early so that they don't have a negative experience that you're then trying to overcome at a later point in time? Because if it becomes a negative experience, just getting the whole thing on in the first place and tolerating it, you're kind of fighting an uphill battle from there in the first place. In terms of access to behaviour analysts and how you frame it, that's always going to be, I think, a bit of a challenging one. I think the key thing is about kind of just... It depends on... It always depends on what behaviour analysts are commissioned for and what they're there to do and what the focus is. Sometimes a lot of behaviour analysts will focus on just kind of, like, skills and skills work and all of that side of things, but that's probably more with, like, little children. We primarily kind of work with adults, and, yeah, I think maybe we're quite open to different referrals and trying different things and trying to understand things from a very behavioural kind of mindset. I would say sometimes even if you have a really radical behaviour analyst, I wouldn't talk in terms of maybe diagnostic criteria. Maybe it might be saying, look, this is what I'm seeing and this is what's happening. How might you actually approach this and what might you do? And actually just describe it in terms of what's kind of just observable and measurable, and then that's something quite tangible that they can kind of work with. We have used functional analysis procedures before where it's being described that a person might be hearing voices or kind of psychotic, where what they would do is they'd shout to maybe someone who had passed away that they knew in the corner of the room, and they'd shout at them for different reasons. Actually, when we did a functional analysis, it was access to tangibles, and we could actually measure it and turn it on and off at different times so we could actually say, well, actually, this is completely environmentally maintained, as opposed to what they thought might be a kind of a psychotic kind of period or something like that. So I think, yeah, I don't know if that answers the question because, obviously, it'll vary from state to state, I assume, in terms of how it's commissioned and what that looks like, but I would just be thinking about how are they commissioned, what are they commissioned for, and then aligning the problem with that maybe a little bit. Yeah. I don't know if you have anything to add. Thanks. Yeah, I wanted to ask a question about the stomp. I mean, obviously, I agree with everything you said about it, and I think it's a really good program. I just wanted to ask about if you had a similar experience to what we have in our part of London, which is that we've reduced and stopped medication which is prescribed for challenging behaviour, and, actually, when we do it, people develop psychotic symptoms. So we just think, actually, although this medication is prescribed for challenging behaviour, actually, it was treating a psychotic illness, and I just wondered if you've had that experience as well. That's interesting. I think it depends very much on how the medications are reduced because I think there's a lot of work coming out around triggering psychosis if the medications are reduced too rapidly. So I think that has to be borne in mind, especially with people with learning disabilities who have far more sensitive brains. So I think the advice that we're given of, you know, reducing slowly in the general population must be even, even, even slower with our population, especially at the lower dosages. So I think at high dosages of medications, you can come down quite quickly, but when you start to get in the sort of... It's a kind of hyperbolic curve, so when you come down really, really small dosages, it should be even, even slower. Is that what you do as well? That's what we're doing, yes. It's about the proportion of reductions that they say. Yes. So the decreases get smaller. The decreases get smaller and smaller, exactly. But even when you're doing that, you find that you're... But it's psychotic. Well, yeah, that is interesting, because there is definitely a possibility that it has been treating a psychosis all along. Thank you. Thank you. You had talked about actigraphy throughout the presentation. Are there any tools that you're using? Like, what kind of devices are you using to track that? Is that just, like, Apple Watches, or is there something within the community that you're using to track that? Yeah, I would definitely veer away from Apple Watches or Fitbits or any of the kind of commercial... those sorts of commercial devices. You want kind of medical-grade devices, so you'd kind of be looking at, like, Camintech is one of the brands that we often use. You saw towards the end, one of the case studies, that was a Camintech device. For the bedside study, we used a device called GeneActive. So it's GeneInsights or something like that, I think it's the company. And again, I find that GeneActive are probably a bit more research-focused, and Camintech are a bit more kind of clinically-focused. Both also do light, but it's mainly movement, and they kind of have a button to trigger, like, maybe going to bed, but I tend not to use that with people with a learning disability, because the algorithms can kind of pick that up anyway, and you just might need to, like, shift it around. The one thing I would say about using them, though, is that you... people often have a worry that they're not going to wear them or that you're going to struggle to get people to wear them, and I find the complete opposite. So once you actually get the person wearing them, good luck getting it off them. And what I would say is that, like, one of my reflections on the study, actually, was that I almost wish I had bought, like, a couple of cheap Casio watches to give them afterwards, because they just really wanted to wear something on their wrists. Even though, obviously, it's not a watch, but they really, really liked wearing the devices. Quite a few people commented on it afterwards. And I think even speaking to some of the sleep clinics in London, I think they've even just given people these devices that are, like, 500 quid each because they're kind of like, it's just ran ridden it off. So I think, yeah. But they're definitely helpful devices to kind of use and to track. And there is a bit of interpretation in kind of looking at them. Like, you can't always say, well, that's definitely sleep, and that's always definitely... because they are algorithms, they're only kind of so good. But I would definitely advocate the kind of use of them, if you can, just to have something objective to say, yes, I know they are sleeping then or not. And actually, there was even one case where we looked at an individual's sleep and there was a massive concern about sleep apnea. Now, I wouldn't say this is a way of screening it out, but certainly if you see that somebody is not waking at all during the night and having a really steady sleep, you could probably argue the case that, well, maybe they're not waking up regularly due to sleep apnea, and maybe there's something else going on. And actually, when you then see the pattern, you see, well, they're doing nothing during the day, you can see there's such low activity, it kind of gives you a bit more. Hi, my name is Niall O'Kane, I'm a consultant psychiatrist in North London. I was just wondering about actigraphy, and should we be screening more consistently as part of our assessments for changes in behaviour and mental illness at the onset, so that we're actually detecting potentially sleep apnea, or at least we're screening for it in that way? Yeah, that's actually something we're looking into at the moment, because I suppose you can't send everybody for polysomnography, the screening tools out there just don't exist, and I do wonder, there is some literature kind of highlighting that just looking at either respiratory rate or oxygen desaturation is maybe not as effective, but I think we are exploring that at the moment to see whether actually if you do track oxygen desaturation throughout the night, because that's mainly the thing that's looked at anyway in polysomnography when trying to pick it up, and that's what's used as you're getting your kind of apnea-hypopnea index anyway. So we are kind of actually exploring that to see whether that might be a possibility for somebody who's kind of going off, and you can give them an at-home-based kind of device that they can use it for a couple of nights, give it back and see whether they're having desaturation. But yeah, we are thinking about that at the moment actually, because as I say, the current way of identifying it in the first place just isn't working. And as I say, sending someone for a polysomnography is just impractical, and it's not going to be done for everybody. No more questions? Thank you. Thank you all. Cheers.

sleep disorders

intellectual disabilities

STOMP initiative

over-medication

autism

actigraphy

sleep onset latency

challenging behavior

environmental factors

psychotropic drugs

caregiver interventions