Transcription
No, I'm a Zoom right. Welcome everybody. Yes, um, so I'm going to talk very briefly about the hoarding research group and the UK Hoarding Partnership. My email's on the bottom, so please feel free to get in touch with me at any point and afterwards, and I can hopefully answer any questions or allow you to join the partnership. You will all be most welcome if you wish.
So, just a very brief summary: you all know about hoarding, you know what it is. I don't need to give you any kind of background to that, but just to remind everybody, it is a genuine psychiatric condition. It's not a lifestyle choice; it's not simply due to people being lazy. It is a recognized psychiatric problem. It may be a type of PTSD caused by childhood trauma; it may be related to autism spectrum. We still don't fully understand the exact causes of it. There has been very little research, believe it or not, done on this. Um, I've got a PhD student starting very soon to look at childhood trauma and how this might link to hoarding.
So, people who hoard need support and treatment. Um, I think we're all now of the understanding that forcibly emptying properties, evicting them, doesn't help anybody at all. Um, it's a traumatic and wasteful time. The best way around is a multi-agency approach. Uh, the Americans have been doing this for quite some time with their hoarding task forces. They seem to be very effective. There's actually very little evidence on how they've been evaluated, or very little published evidence on how they've been evaluated. Lots of people around the country are trying out these approaches. Um, there's one down at Royal Borough of Greenwich; they just started one. County Durham have just evaluated one for six months and fed back that to us in our meeting in January. So, there's lots of these things popping up all around the country, and there seem to be the best way forwards, but how you fund those and how you organize those, of course, is rather tricky.
We do still need greater understanding of what hoarding is. Um, it seems to manifest itself in several different forms: how it can be reduced, how it can be cured. We still have very little idea. We're not even sure what causes it, or how, say, for example, trauma for one person has a major effect, and it doesn't for other people. So, we still need an awful lot of understanding about what this is and how we can help people.
So, in 2017, I established something called the Hoarding Research Group at Northumbria, myself and just kind of a handful of colleagues in psychology. We were very interested in hoarding and the psychological characteristics, and the idea was to gain a better understanding, to devise some novel intervention strategies. We were working with clinical colleagues over at Newcastle Uni, and so we drew on various members from Northumbria, from Newcastle and Sunderland, all different aspects of psychology. Our problem was we only had a few meetings, and then we were overwhelmed. Word got round the university; they put our details on a webpage, and we were overwhelmed with interest from housing officers, environmental health officers, health officers, police officers, social workers, community psychiatric nurses, and we—the group—got so big, so big, and we had this split between research and practice, and how those work together was getting ridiculous. So, we set up something called the Northeast Hoarding Partnership. This was for people who work with people who hoard. It was a forum for professionals to get together to share best practice, to have a moan, um, just to talk to one another, and people realize that they weren't the only person dealing with these very complex cases. That got too big for its boots, and we're now the—we're now a National Partnership, the UK Hoarding Partnership.
So, the two groups then—the research arm, if you like—meets monthly, brings together researchers and academics. We publish research; we apply for external funding, and we suggest—you know, we suggest things for the UK Hoarding Partnership. So, that was established in 2020 as the Northeast Hoarding Partnership, but from January this year, it's the UK HP. We meet every three months, and we discuss issues relating to professional experiences of hoarding behaviors, and we try and support professionals and give advice. And we've got a large list of people with diverse experiences, and people are always very happy to share advice and support and suggestions and whatever. We take a trauma-centered approach; we assume that this is the kind of main basis for the issue that we see our—our—our people deal with, and certainly with our interviews with people who hoard, this comes out overwhelmingly.
So, the two kind of work together really to form a synergy. The Hoarding Research Group has now also broadened out. We have a—there's a split-off group called the UK Hoarding Research Network that's headed by Sharon Morraine down at ARU, and we—our little Northeast team—feeds into that larger National body. So, there's a growing wealth of expertise now in the country with researchers and practitioners getting together to really try and understand what's going on here. So, you can see now this is the kind of basic idea: we've got the research arm, we've got the practice arm; there's various people around the country with support groups, and we're starting to put those people in touch with one another. So, we're building up this coherent picture. I also teach a module on hoarding, which, to my knowledge, is the only one in the UK. I—I—I could be wrong, but hopefully we'll be developing out other teaching and CPD opportunities for people as well to share the understanding and share the knowledge that we've—that we've got. But that's—that's in its early stages yet. That's just a list of the current members. Um, this was about a month ago when I put this slide together, so we've already got another five or six people added on to that, and I'm not obviously not going to go and talk, mention all of them, but you can see we have a wide and varied group of members.
So, just some little examples really of the current things that we're doing. We've been looking at the prevalence of animal hoarding in the Northeast and around the UK, a unique and highly complex aspect of hoarding which is very intractable and very difficult to address, and I'll talk a little bit more about that in a few minutes' time with an example. We've done some work looking at transition from independent living to sheltered housing, and this is a particular problem for people who—who—who hoard. They—they have too much stuff, and—you know—they have very strong emotional connections to their properties and to their possessions, and so that—that move from independent to supported housing is particularly traumatic. We're looking at multi-agency approaches, and as I said, we've had talks from people around the country who've shared their experiences of developing these multi-agency approaches, and we're trying to evaluate them and get some kind of feel for what's the best way forward. We're very interested in how hoarding develops and is maintained, and I've got—as I said—I've got a PhD student who's looking at childhood and the developmental aspects of hoarding. We're very interested in novel clinical interventions for hoarding. Um, I think Sam Wayman's here on the call; he's a PhD student at Birmingham looking at VR activities—very exciting stuff. Um, so these are, you know, very interesting ways of trying to be creative and look at different ways to address this. We're obviously concerned with mental capacity and safeguarding and legal issues. All of these things are very, very complex and can throw a real spanner in the works when professionals are trying to help people, and obviously I'm a psychologist, so we're very interested in the psychological and mental health aspects of hoarding.
So, a couple of examples, and we published a paper a few years ago now, but we were looking at the economic costs of hoarding behaviors in local authorities and housing associations. We—we just kind of wanted to get a feel really for how much these cases cost, because if we can prove to people that there is a financial cost for dealing with these cases, then somebody might—might give us money to try and solve it and try and reduce these costs. If people think they're saving money, they might—they might give us some money. So, we looked at the economic cost of individuals; it was located in the Northeast. We sent out surveys to 13 social housing providers and one emergency service. Seven of the housing providers responded, and the emergency service, which was Tyne and Wear Fire and Rescue Service. The average number of housing tenants was over 15,000; hoarders only comprised 0.14%, which is way—way lower than the suspected range of about 2 to 6%, but as we—as we spoke to housing officers, they—they said, "Look, the people who we deal with are the tip of the iceberg. Um, if you're a good tenant, if you pay your rent on time, if you make a space for the gas person to come in to do the annual gas safety check, you know, and you're not cluttering your neighbors' gardens or anything like that, then you probably won't even come on our radar." So, this is the—these are the severe cases who were the tip of the iceberg, really. So, the numbers were small then, but the majority of these people required significant action, a lot of staff attention, cleanup operations, legal actions. Over half the cases required health and social care services and were highlighted as safeguarding concerns. We didn't include these costs; it were just too complicated for us to pin down any idea of how these things might cost. Less than 10% of cases were resolved; the only resolutions were when people died or moved to another housing area. So, the cases, in effect, were not resolved. The housing providers estimated—and these were very—these were guesstimates, really, because, you know, counting beans is—is—is often quite difficult in these cases—they thought that each case cost them about £15,000 per year. This was way back in 2017, so you can probably add a naught on the end now. More complex cases where there's evictions or legal fees, you know, you're looking at about £35,000 per person per year to deal with. The fire and rescue service estimated that hoarding behaviors cost them over £100,000 per year, and their key concern, of course, was the danger to their officers when trying to get access to—and we've had several very sad cases in—in—in—in the Northeast where people have sadly died because the fire service couldn't get in and rescue them; they couldn't escape their houses because of the clutter. So, it's a real concern to the fire and rescue service. Uh, yeah, sorry, I'm—don't know what I've—don't know what's happened there. Yeah, so, right, so, yeah, so this—they represented the most serious cases, and there's many other cases which are likely to be hidden. There will be a lot more—more people, especially ones in private housing. These are the ones that we found were all in social housing. Each case is unique; it's complex, and most of them remain completely unresolved. So, you know, deep cleaning, house clearances, moving people out, clearing their houses, bringing them back in again, decluttering—all these things are very, very costly; they're very traumatic; their effectiveness is quite short-lived. We've got anecdotal evidence to suggest that in about six months' time, properties are back to, you know, almost the same state as they were before. So, we know that the best strategy around the world—a longitudinal multi-agency response—with the cause of the hoarding, which we presume is some kind of trauma, being addressed, and at the minute that's—that's not happening in the UK. So, we really need to think about developing effective intervention strategies which—which is a problem in the short term, but resolve the trauma and the hoarding in the long term, and I think we're still quite away from—from that yet in the UK. I hope I'm wrong.
Just another example, just to finish off with: we—I mentioned animal hoarding before. My PhD student, Justine Wilkinson, who's also an environmental health officer, she's—I think now she's the UK's leading expert on animal hoarding, I think so. If—if—if anybody needs any advice about animal hoarding, Justine is your person. So, this was a part of a wider research into understanding how practitioners manage animal hoarding, and we looked at the characteristics. Uh, this was a first step; we looked at media-reported prosecutions because these are the only way that we can get access to this information. Animal hoarders are very secretive; you often don't know anything about them. The only people that might deal with them are the RSPCA and the police, so they often don't come to the attention of—of—of people like housing officers and whatever. So, we did this survey; we did a media survey of all the prosecutions for animal hoarding. So, again, these are the most extreme cases, the ones that come to the attention of the courts; they're all across the country, um, but in areas where there's a higher population density. So, they're typically found in urban rather than rural areas; they're found in areas with high indices of deprivation, and we know that—I mean, certainly areas with deprivation are also linked to real problems with—with—with trauma and with—you know—poor mental health, and so it's no surprise that—that—that they are in—in—in such areas. The self-reported health in these areas is bad or very bad. It's also areas with a high proportion of people in their over 60s and areas with rental properties. So, you know, the idea that animal hoarders are all living on private farms somewhere is—is not quite true; it's mainly people in kind of—um—social housing, small social housing in—in kind of urban areas, and cats and dogs is—is obviously the most obvious example. So, in our study, we compared it with a very large survey that had been done around the world by Nadal in 2020. Females predominated; that seems to be the case around the world. We don't understand why, um, but the mean number of animals per case is 44—lower than that reported by Nadal, but it's—it's still, you know, 44 cats in your house is—is—is rather—rather too many, possibly. Cats and dogs obviously featured, uh, as did that survey by Nadal. Very sadly, you know, around half the cases, there—there's dead animals; they need euthanasia, um, and the cases are incredibly difficult to resolve. Recidivism is highly common; 20% of the sample breached previous bans. People typically move around the country, so they—they pop up again and again in the statistics, moving around the country, um, taking their animals with them. In one case, a guy was moving crocodiles around the country, and was quite interesting. The living conditions are very squalid, and the outcomes are not very good. The animals get removed; there's disqualification orders; there's a lot of fines, but people can't afford to pay them. So, very, very intractable, difficult cases for professionals to resolve. So, again, I mean, each case is unique; it's usually complex; these are much more costly and lengthy for people to resolve. Again, we suspect that there's unresolved trauma here. Very difficult, though; I'm not aware of any research where people have actually interviewed animal hoarders. Justine tried; we couldn't—we just could not get access to these people. They do not volunteer for research; their only encounter with the authorities tends to be when people are trying to arrest them or take their animals away from them. So, these are very—in—in—in many ways very, very sad people with—with clearly problems that are—that are very hard to access and help. So, we—this raises—you know—there's a very ethical challenge here. You know, people should be allowed to have animals; they often do deeply care for their animals, but—but—but fail to do so. So, it's a fine balance here between, you know, moral and ethical duties. Um, there's no magic solution at all. Um, you know, no one agency can really take the lead with a holistic option; it tends to be the RSPCA; they're the default setting, but their solution is prosecution; that's all they've got to resolve it with. So, it's very rare that you get, say, an RSPCA team working with a housing officer, working with a social worker, working with, you know, an environmental health officer. So, that multidisciplinary approach is incredibly important, even much more so in this—in—in these complex cases.
So, our priorities really for the groups are, you know, to develop and evaluate these multi-agency approaches. We think those are the best ways of moving forward. We need a better understanding of how childhood experiences, things like trauma and uncertainty, lead to hoarding. There's a group of children right now that will be the—the people who hoard of—of—of tomorrow, and if we can find them and—and—and help them, then we're—we're stopping this in—you know—in its early stages rather than wait until somebody's 50 or 60 and has had a lifetime of—of—of these problems. So, we need a better understanding of the psychological and clinical aspects of hoarding that can then inform novel intervention and treatment strategies. You're probably not—not interested at all in digital hoarding, but we've led the way in better understanding digital hoarding and how this relates to anxiety, cybersecurity, complex compliance behaviors, and sustainability. Um, we are in the process of developing online and written training packages for professionals, bespoke packages that try and address the specific concerns of people in certain professional groups, and we're developing and evaluating support groups, so whether these are online and face-to-face, that's one of our key priorities. And really, you know, we need money to do this, so we are putting in bids for places like the NIHR, um, to fund multi-agency approaches, um, and we're also very keen to strengthen existing collaborations and develop new ones, because if we, you know, form a larger coherent whole, then we're in a much better position to lobby for funding and—and to gain a real presence both in research and in practice. So, that's it; that's me. Thank you very much for listening to me. My email is there; please get in touch if you want to join the group or if you've got any questions.
Oh, thank you so much, James, and—um—good morning everyone. Really great to be here to talk generally about—um—suppose the legal framework for hoarding, but I want—what I want to do is try to cast my net wide here and also try to make links with how the law also feeds into related issues around executive functioning as well as self-neglect, because I think—um—from a legal perspective, these things are often interlinked. Let's just start off by thinking about the legal framework, which I'm sort of summarized on this slide here, and I suppose what I want to argue here is that—um—not only is the legal framework very piecemeal, a bit sort of higgledy-piggledy in terms of its development, it's also important to remember that it's not designed entirely around issues like hoarding and self-neglect. So, to get to the sort of—to the nub of how you respond as to which legislation is relevant here, you have to do a bit of work; you know, you have to work around different statutes, different—um—statutory instruments, bits of guidance to try and put together your powers and—um—understand your—your legal responsibilities. In a lot of cases, that may be around service provision in relation to the Care Act; in other cases, it might maybe something a bit more heavy-duty, uh, maybe around the Mental Health Act or even—um—housing and environmental health law. Um, so the important thing to remember is this is—um—not a coherent framework, and indeed why should it be? You know, would you normally have a single statute just covering one area such as self-neglect or hoarding? Um, it's not unusual to have to put together different areas of law and try to work them out. Now, what I want to concentrate on in the next—um—20 minutes or so is, in particular, the Mental Capacity Act and the inherent jurisdiction of the High Court, to what extent they provide—um—any—any solutions to some of the issues that are—are raised here, um, and I think those areas of law have been particularly prominent—um—in recent years in terms of—um—exploring the various issues that often arise. But, of course, often these sorts of issues around self-neglect, hoarding, executive functioning will engage safeguarding issues, uh, which as a matter of law are framed around Section 42 of the Care Act. So, this is the centerpiece of the—um—rather—rather small safeguarding framework that's contained in the Care Act. So, you know, this is…
Asking or telling the local authority you must carry out inquiries, um, in certain cases where you have reasonable cause to suspect that the person has care and support needs, is at risk of abuse or neglect, and is unable to safeguard themselves, um. So, key things to remember about this duty is the one; it's not about the person's consent. The duty applies irrespective of consent; at least the duty to carry out inquiries, um, isn't linked to consent. The other thing to note is that it's an extremely broad duty in terms of the criteria. We're not talking about eligible care and support needs; uh, we're not talking about significant neglect or significant abuse; it's any level of abuse or neglect, possibly. And I think we argue this at the Law Commission; possibly the most, um, uh, restricted part of the criteria is the third limb—the inability to safeguard yourself—although there's been very, very little sort of, um, exploration about what that will mean, um, in practice and whether that means, um, how, how, how closely that's linked to, uh, a lack of capacity or how broad that can go. Anyway, we haven't had a lot of case law specifically around hoarding, so we did get very excited by the 2022 case AC and AG around hoarding in the Mental Capacity Act, which is, I mean, as in all cases, it's, um, it's a Court of Protection case; it's very much based upon its facts, um, but it does, you know, provide some interesting, um, pointers in terms of how the courts deal with the issue of hoarding.
So some of you may be familiar with this case, but it basically involved, um, a 92-year-old woman who got Alzheimer's, um, who lived with her son. Her son also has a range of mental health problems as well; you know, he's going through his own trauma. Both mother and son have been diagnosed as having a hoarding disorder, so it's, it's a sort of full-on situation there. And basically, the local authority, being concerned about this for some time, particularly because they feel their concerns are really focused on the on the woman, AC, and they've become very concerned that they're just not going to be able to meet her care needs, primarily because of the, um, the, the, you, the sheer volume of clutter, um, uh, in, in her, in her home—at the items which means you often will mean that the, um, agencies just can't get in. Now there's also the added, um, ingredient here that the son is also reluctant to let our services in, but primarily it's, it's a sort of hoarding issue here. Anyway, the interesting response—the initial response to this scenario—maybe it's not a response but a reaction—is that, um, uh, through other, um, um, events, the woman ends up in hospital, and at that point in time the local authority take the case to the court to get her placed into a, into a care home, and they, and the court agrees to that on an interim basis; um, they agree that she probably lacks capacity and that that this move is in her best interests. So you can see quite a, quite an interesting response here to, to some of the issues that I raised, which is that actually the person themselves gets placed outside of their home, which is obviously a very, very serious step to take and raises all sorts of issues, um, not least under Article 8 of the European Convention.
The other response of the Court here, which is equally interesting in a hoarding scenario, is to appoint an independent deputy to act, um, on her behalf. So you have someone there who is taking control, acting in the person's, um, best interests. The other interesting element of this, um, case is that it does confirm: if you're carrying out a capacity assessment, you need to understand or you need to identify not just the question of capacity that you're assessing capacity in relation to, but also the relevant information—I.E., the information the person needs to understand, they need to retain, and they need to use. And we, so in this case, the judge used, confirmed the relevant information, um, in respect of making decisions as to items and belongings, which is kind of code here for, for hoarding issues. So this is the, the, the relevant information identified by the judge, which is: understanding the volume of belongings and their impact on internal use of rooms; ensuring safe access—the importance of ensuring safe access and use of the rooms; the creation of hazards; the safety, including the external safety of the building; and the importance of removal/disposal of hazardous levels of belongings. So health warning here, of course, that any list of, um, relevant information will need to be tailored to the individual circumstances of the case, so you shouldn't always just transpose the lists that are provided by the court into an individual case, but, but nevertheless, I think this provides a really important starting point when it comes to identifying the relevant information.
Anyway, the judge's decision in this case was that, uh, that, uh, the judge accepted that, uh, the woman in this case lacked capacity to make decisions about managing her property and her items and belongings. So you can see there the judge separates the two: property and affairs are a separate capacity, capacity domain compared to items and belongings, so it's not part and parcel; hoarding isn't part and parcel of property decisions, in other words. Um, uh, the judge agreed that a trial at home, I.E., for the woman to go back home for a trial period, wasn't without risk, but on the evidence this was a manageable risk and in her best interests. Interestingly, what the court did in this case is place certain conditions—quite stringent conditions—on the son to allow the mother to go home, including requiring the son to give access to care workers, to work proactively with the deputy, to continue his work on his mental health issues, and to make sure he's looking after the property appropriately. So quite, you know, quite an extensive use here of Court of Protection powers to place, um, conditions on a third party in order to assist the person coming home. And you know, a lot of judges give very good quotes, and we have a great quote, um, which is harking back to two previous quotes given by Court of Protection judges here, which is that the aim of the Court shouldn't be to remove all risk, but to create, uh, manageable risks. So, um, important message in terms of, uh, practitioners not to be too risk-averse, although, you know, I often think that it's all very well for judges to be able to say this and in their courtrooms, but on the, at the coal face, it may well be very, very different. But nevertheless, I think it is an important message, um, from the, uh, judiciary to, um, that you can't, uh, get rid of all risk entirely.
So moving on from hoarding to the linked issue of executive dysfunctioning, which is sometimes linked to hoarding. So this is the notion that, you know, when you're sat down with a person undertaking a capacity assessment, perhaps the person gives you coherent, um, answers to the questions you're asking them, but subsequently they're unable to put into effect what they intend to do, what they've expressed to you at that interview. So, you know, in, in layman's terms, this is often referred to as being able to talk the talk but not walk the walk, and it's associated with a, with a wide range of conditions, um, including brain injury, autism, Prader-Willi syndrome, OCD, and, and hoarding, which is, um, uh, very relevant here. And clinically, at least, it's, it's generally used to refer to a wide range of cognitive function, um, functions commonly thought to be situated in the frontal lobes, um, of the brain. So that's what we're talking about in terms of executive dysfunction. A number of important issues are raised in the context of a capacity assessment where you're dealing with someone who is potentially, um, experiencing capacity issues as a result of executive dysfunctioning. In particular, I would suggest to you that the issue of supported decision-making becomes really important here. I mean, it's important for any case, but a key question to ask yourself is: can the person be supported to understand that there is a mismatch here between what they say at the interview, what they say they want to do, and what they actually do in practice? So can, um, things be put in place to assist that understanding? The other challenging issue here is that it's not all about the assessment or the interview that you're carrying out; it's also something else going on here; see, it's performative: can that person do what they've told you at the, the, the interview? So it's much more than your observation of the person; you're going to need to think much more creatively about how you take information about, uh, the person's, um, uh, ability to make the decision in question. So it is going to be important to gather information from a wide range of sources, including family and friends; it may be that you need to observe the person in practice, also look at the person's history, and of course, which is something that was raised by Nick, it's very important to work in a multidisciplinary way as well and gather information from other agencies. Also remember, when it comes to the capacity assessment, uh, the relevant information includes the reasonably foreseeable consequences of the decision or of failing to make the decision, which, especially the latter, may well be very relevant in a case of executive dysfunction, but it's important here that the inability to make the decision must be the result of the person's difficulties with their, um, executive, uh, functioning ability. So this isn't just a case of the person understanding the information, weighing that, and deciding not to implement it; this is an inability to give effect to, use that information when it comes to carrying out, um, the task. So the outcome of the decision is not relevant to the question of whether the person has capacity. So this is, is a very challenging issue for practitioners that you are focusing on the, the, the statutory criteria and the inability to make, uh, the decision, not the decision that is actually being made; um, you know, it's about focusing on, uh, particularly the functional test of capacity and linking that to the impairment or disturbance, but of course executive functioning or dysfunctioning also raises key issues in respect of best interests.
So in other words, if you've determined that the person has lacked capacity, um, how do you respond in a, in a, your best interest decision? And I think one of the key issues here is the importance of the person's wishes and feelings. As we know, just because the person lacks capacity, that doesn't give any automatic discount to their wishes and feelings; in fact, in a lot of cases, they, they achieve greater significance, um, and I'd argue that when it comes to someone with executive dysfunctioning issues, their wishes and feelings—I.E., the ones that, that have been expressed in the interview—will almost always be the most significant factor when it comes to the best interest decision, because what you're trying to do in effect is allow them to, to, to implement those wishes and feelings, and that should be the, the focus of your best interest decision. So, you know, you'll be thinking about making decisions, taking actions, developing strategies, or providing services to be allow the person to implement what they wanted to implement as expressed to you at the, um, interview. Um, of course, uh, again, general principles from the case law are also important here when it comes to the best interest decision, um, and this harks back to the quote in the hoarding case, which is that decision-makers shouldn't be risk-averse when it comes to best interest decision; um, uh, you know, think about creating manageable risk with the aim of achieving the person's happiness, which is a very important message from Sir James Munby in the MM case. And also don't forget that, you know, this is about the person's best interests, but that doesn't mean you, you have to ignore the impact on other people; you can factor that in to the best interest decision, and in some cases, including in hoarding, that will involve protecting others from harm; that is perfectly okay from a legal perspective to factor in to your best interest decisions, so do bear that in mind.
Finally, what I want to, um, discuss before I finish is the use of the inherent jurisdiction of the High Court. So the inherent jurisdiction has survived the introduction of the Mental Capacity Act. In some cases, it allows for the courts to order intervention into the lives of people who have capacity. Now, you know, there are clearly—this raises very important legal and ethical issues—so the courts are often reluctant to do this, but what I want to suggest to you today is that maybe in the future the inherent jurisdiction might develop in the area of providing assistance when it comes to issues of, say, self-neglect, um, or even, um, hoarding, uh, specifically as well. Now I'm not suggesting we're there at the moment in terms of, uh, case law, but we, we, we have had indications in some cases that the courts may be prepared to go in that direction. This is quite a, um, interesting example of this, which involved, say, in a case of quite severe, uh, self-neglect. So it involves someone called CD who's diabetic and has all sorts of issues around incontinence and being unable to manage his home environment. So he's also an alcohol user, frequently drunk at home; uh, lots of issues around him falling at home, um, injuring himself, uh, being able to, um, not being able to manage his personal care, and consequently his home environment has deteriorated; care agencies can't get in, and he's also ringing up emergency services frequently. So he lives at home in a flat; um, his, his main friends are fellow drinkers who also have, um, very serious alcohol issues. So by the time the case gets to court, things have come to a head: so his flat is soiled with human waste; it's putting him at risk of health risk as well as putting at risk, um, uh, visitors at risk as well; carers cannot access his flat to provide him with, um, uh, self with care; and he's not willing to, uh, change his ways or be moved to a different environment. So the local authority go to court with quite a detailed 20-point care plan, as they call it, which they want to put before the court in order to agree it, and basically there are two prongs to this care plan: basically what they want to do is get access to, to, to the flat, um, I get access to CD to provide him with appropriate care, and secondly to make the flat safe again for, um, for human habitation. So what did the judge decide in this case? Well, all parties were agreed that the care, care plan was good, well thought through, and it was clearly in his best interests, but the, the, the parties disagreed as to, um, the area of law that this could be justified under. The local authority agreed that CD had capacity but felt the orders could be justified under the inherent jurisdiction of the High Court. The Official Solicitor disagreed and said, no, this is a capacity issue; CD lacks capacity; therefore, the Mental Capacity Act is the relevant framework here. Here the judge, I think it's fair to say, hedged his bets. So the judge declared that CD was a vulnerable adult for the purposes of the, um, uh, inherent jurisdiction, but also that he lacked capacity to make decisions as to his care, um, and in terms of the relevant impairment/disturbance here, the J, judge very much links this back to his psychiatric background of depression, dysthymia, and chronic alcohol abuse, but is also noted that this was a case of fluctuating capacity and very often CD would have the relevant capacity. So therefore, the outcome of this case was that the judge was prepared to make an order initially under the Mental Capacity Act, but what the order did was that it included a finding that CD was vulnerable, a vulnerable adult for the purposes of the inherent jurisdiction, so therefore that could be used in the future if needed, if there were circumstances in which, um, uh, CD had the relevant capacity. So I'm not saying that this is, this indicates that the inherent jurisdiction can, um, provide any great solution here; all I'm suggesting that there may be some cases around the edges where the courts are possibly, in the future, more prepared to, um, intervene in, uh, these sorts of cases where, um, uh, the person is classified as being a, um, vulnerable adult.
As Jam said, I'm Jen, and I'm joined here today with by my colleague Maria Brent, and, uh, the other project team members on this project were Dr Nicole Steels, Steven Martino, and Caroline Nory, and also Megan KH from Hoarding UK. The usual disclaimer from our funders, NIHR, SSCR, and, um, our study adopter, NIHR Ark South London, that the views today are ours, um, the authors, and not necessarily them, the NHS or the Department of Health and Social Care. We will be using a couple of acronyms today, um, mostly not the ones that are on the screen, so: person with hoarding behaviours (PHB), people with lived experience (PLWE), and also we're going to be talking a lot about professional declutters, so you'll hear us saying PD a lot, and also referring to local authorities as LAs. So for the next 20 or so minutes, um, I'm first going to take us through what is professional decluttering, um, something that's actually been quite difficult for us to, to define, um, then I'll move on to an overview of our research projects, covering the project aim, who was involved, and what we actually did, and then I'll pass over to Maria who will take us through some of the findings from the research, and today we're focusing particularly on the theme of trust, um, and at the end I'll give you a brief idea of where we're going next with the research, and then we'll take some questions. So what is professional decluttering for a person with hoarding behaviours? As I said, this is a question we've been grappling with throughout this project and projects before it. It sits within harm reduction intervention approaches that aim to reduce the volume of possessions in the home, but such interventions can vary widely, and in our view, um, we've tried many ways to work this out, but we think that they exist on a continuum, as we've put on the slide here. So on the one hand, you have interventions which are forced through threats or application of the law; these are without any input from the person with hoarding behaviours and can take place very quickly and intensively to strip things out of the property. As with anything, there's a lot of nuance in this, and, um, removing things quickly, um, may be the right intervention in some cases where risk is extremely high, but most commonly, um, people, um, experience this kind of intervention at the very end as being very traumatic, and it doesn't result in any lasting changes. On the other hand, the gold standard intervention, as we know from other research, is one where the person with hoarding behaviours is fully involved, and the choosing and removal of items is done at their pace over an extended time period. A joined-up multi-agency approach around the person and with their involvement is also best, and likewise parallel psychological support, like CBT for example, uh, would be in the very best version of this intervention. From our research in this project and the earlier ones, again, we see deep cleans and clearances as being more towards the left-hand side, and decluttering to be more towards the right. However, as I said, there's always nuance, and every intervention and individual experience does differ. It is worth adding here that none of our participants that Maria is going to talk about soon, um, have received CBT as part of their PD support, and, um, there were very few instances of multi-agency working. So our research was an exploratory study, um, of the role of professional decluttering services as part of interventions with people with hoarding behaviours. Given our expertise in adult social care research, we attempted to focus on people receiving decluttering support who were known to adult social care. This was fairly loose to include people whose PD was arranged and/or paid for by their local authority and also those who paid for the PD themselves but had a social worker who was aware of the arrangement. However, we did end up including people beyond this scope in our final research. So throughout our research, we regularly sought input from our two advisory groups. The first was a group of 10 people with lived experience of hoarding, either personally or as the family member or carer of someone with hoarding behaviours. This group was chaired by a person with hoarding behaviours who was also then on our second advisory group. The second group had representatives from Hoarding UK, the Association of Professional Declutterers and Organisers, the British Association of Social Workers, and the National Development Team for Inclusion. Both groups were instrumental in the development of our research methods, our understanding of the findings, and our approach to dissemination. So what did we actually do in the research? Uh, first, we did a review of PDs' websites to better understand the range of decluttering support out there; then we
Interviewed 18 PDS and 22 Frontline local Authority staff about their experiences of the full process of working to support somebody with hoarding behaviors.
Next, we interviewed six people with hoarding behaviors who had previously or were still receiving support with decluttering from a PD. Finally, we went along to decluttering sessions whilst they were happening, so there's actually much more we could say about this method around getting joint consent from both the person with hoarding behaviors and the PD and being physically present as a researcher in a cluttered space when things are being moved around. Um, but I'm afraid we'll have to talk about that another day. And as I'll come back to at the end of the presentation, we are now in the dissemination phase of the research. Our project, whilst fairly small, gave us a huge amount of really detailed data and discovered and covered a lot of topics. The ones here are the main areas we ended up exploring; however, the overriding theme that cut across almost all of the findings was the importance of trust. So over to Jen to talk through some of the data and our thoughts on it. Thanks.
Hopefully everyone can hear me okay? Yeah. Um, thanks for that for that introduction. So we wanted to share our findings with you today, and drawing on direct quotes from the participants that were involved in our study, um, and exploring this theme of trust and how a person with hoarding behaviors and the PD develop that trust. Show that that didn't start from a neutral place. So, um, people with hoarding behavior shared that they'd often had really distressing, quite traumatic experiences before working with the professional declutterer. And I think just looking at these quotes here, so these are both from people with hoarding behaviors that we spoke to prior to working with a PD, um, there's an enormous sense of shame I feel when I talk to people about the difficulties that I have; that I'm practically being asked to pull down my pants and bend over and then show everybody all the photographs of my bottom, if you see what I mean. And likewise, it left me on my knees for six months afterwards. Social Services brought some people in, and they did it to me in my own home; it was awful and degrading. I think there's a really powerful insight into the experiences that people had, um, that they felt very exposed, um, they felt very vulnerable, um, and it really was quite traumatic. Another key issue as well that they talked about was being asked by professionals the same questions, being asked to divulge really personal information, which one person described to me—they treat it in a very cavalier fashion—um, you know, why do you need a service? Which kind of links back to what Nick was saying at the beginning around people feeling that, oh, you know, that we're lazy, that are we deserving of this service? So I feel like… Chris, witty next slide please, Jen, if you don't mind. Thank you.
Um, so in terms of identifying a PD and how that was commissioning, we found that that really varied so widely across the different local authorities and the people that we spoke to. There didn't seem to be a consistent approach. So there was variety in looking at the thresholds of how they engaged PD, how they were found, chosen, the duration of the work, um, how they were paid for, and commissioning. In many local authorities, especially as a social worker having worked in local authorities, seem to bypass some of those really stringent measures. So, for example, they didn't—they wouldn't necessarily have to go through a preferred provider list or perhaps go through those kind of checks that would normally happen. It often tended to be word of mouth. So a social worker would explain, well, um, I've worked with Sarah; she provided a really good service, so I recommended her to somebody else in another team. And those recommendations kind of not just went across teams but actually went from one local authority to another. If somebody provided a good service that was person-centered and and they they received good feedback from as well, um, and it was often commissioned through a kind of one-off spot purchasing. But then what happened with that as well is once a once a PD was found to provide a good service that they were actually then inundated, um, and so overwhelmed that it was then quite difficult to get access to them. Um, and cost as well, I think, uh, played a big part in the commissioning um process. So as we can see there, um, you know, uh, so they go to to position when resources are dwindling, is the cheaper option, you know, will be will be chosen. And that's a quote from a local Authority worker. So, uh, moving on to the to the next slide. Sorry. Thanks, Jen.
So in terms of once um a PD's been identified and that connection really between the PD and the person with hoarding behavior, it was kind of building that trust, and and I made a note—I think Caroline mentioned in the chat earlier about how important trust was—but interesting PD shared that actually part of that trust is knowing when not to work with somebody, when not to make that intervention. And they talked about often tension perhaps with local authorities where they were um asked to go and work with somebody around a specific issue that there might be an issue around risk. And I think as this um quote really uh illustrates from a on the right from a PD that they've worked with local authorities, they've insisted they'll go in and they'll go to start that consultation process, but if the person is saying no, I'm not ready, um, they won't then progress it. It has to be at the right time for that person, um, especially for the person with hoarding behaviors to feel safe and feel ready to engage in that process. And one described it as a, you know, have to have a chat. The PD was talking about, you you need to engage with that person; you've got to find the right personality match; there's got to be a connection with those parties that you can start to build that trust to allow that engagement. Uh, Thanks, Jen.
So I think setting expectations, so once the the the relationship's been formed and there's been agreement there, again it's about setting trust around those um the person feeling in control. So I think a central theme in our findings was trust, but I think it was also for the person feeling that they—the person with hoarding behaviors—had control in the process. So the plan for each session, once they they'd met the the uh PD, for the person was was um planning that session, um, and I think these quotes illustrate that; they're both from a person with hoarding behaviors. I absolutely felt that I had control, you know, that was absolutely essential to me. And again from the PG, the client decides what we're going to do; I'm not going to arrive there with a bag and say, you know, follow me, we're going to do this. And I think we witnessed this on our goals where Jen and I um actually went along to observe PG's working with people with behaviors that it was very much a collaborative process that they worked together and the person had control and and set the agenda really. But they also could say, you know, I witnessed that that, you know, um, the person with hoarding behaviors so say, you know, I'm done now, I'm tired, can we just give it a rest? And that was fine. So again they had control and and in the process, but also when it started and when it ended on the sessions themselves. Thanks, Jen.
Um, so again, the trust between the the the PD and the person with with um hoarding behaviors. I think what the the PDS recognize—it's not something that people enjoy when they're talking about the people that they're working with—but you can see them settling after about 50 minutes. It's quite interesting because they do trust me, but that takes time. Again, that was a central element; it needs time to build that up. But also the human element from the person with hoarding behaviors, you know, they said what's important to them is trust, but they've got a sense of humor; they could have a bit of a giggle, could have a laugh. They talked about the PD's manner was excellent, and obviously discarding things wasn't an easy process, so that often triggered quite emotional responses, and they felt what was really helpful was the PD was able to manage that and understood that and gave them time to process that emotion. Thank you. So trust with discarding, so so throughout the process really, um, making sure that the person, as we've discussed, has has a decision over what and how things are discarded and that the PD uses their local knowledge; that was really important because person with hoarding behaviors described to me the trust that they had with their PD was um that they had a really good local knowledge about recycling and what was going on. She talked to me about having shared values with the PD because she said, I I get her; she's got a real strong sense of sustainability; she's ecologically minded; we've got the same value base, and that's really important. So when she says she's going to take something away, sometimes going to a charity shop just doesn't cut it; I need to know exactly where my items are going, how they're going to be recycled. So this PD knew about repair shops and specific areas where those items could be recycled or moved to. So again, the quotes speak for themselves really that it's um about trust, about how that person's going to work with them and um just that connection. One of the PDs also talked about some strategy; she said what was really helpful working with somebody, and I witnessed that as well, that we can categorize items. So they talked about an example where they had uh, you know, six can openers and put those out and say, well, do we really need six can openers? Well, no. So again, the person was in in control of the process and how things were discarded. Thanks, Jen.
Just moving on to the—so checking in and accountability, this was a really interesting one because this varied quite widely as well. So when we talk about checking in and accountability, often at the beginning that would work well, so there would be contact with the social worker with the local Authority will commissioning it, the PD and the person with hoarding Behavior. So there'd be often a meeting—not always—but at the beginning to to agree the scope of the work and build that relationship, but it seemed to be really variable then after how that was followed up and monitored. So, for example, uh, the PD may provide full written reports to the social worker; they did say that they felt that they weren't always read, or the social worker would check in with a person with hoarding behaviors and the PD either verbally on the phone or an email, um, but it wasn't formalized and it wasn't consistent; it did really vary on how things were followed up and ended as well. And that may include people using before and after pictures too, um, in terms of providing evidence for Commissioners, that obviously with the person's consent as well. So that again, you know, varied, which was a constant theme I think throughout our findings; there was often not a not a consistent approach. Thanks, Jen.
I think this was really important to us as well and the import—so our we we reached our our research aims and goals—but the importance of trust in our own research. It was really important to us that the people that we worked with felt that they'd been listened to and respected. And I think this quote um illustrates that that they fully—they I fully understand your TR in what I'm giving you with respect, and I'm deeply grateful because understandings of what happens to us people who suffer with my difficulties is that the only way we should ever learn how to help people really. And it was again a key theme that people really valued this research; they felt that their voice hadn't been heard or um and or they felt that their their contributions were disregarded. So they were all uh passionate really about getting their their feelings, their experiences out there and hope that we can develop this going forward. So those were just a real helicopter view of our uh findings. And in conclusion, bringing that to to a head really, um, key thing is a need for more consistency and robust processes in the selection, commissioning, and monitoring of of PDs. And again, this has been echoed in in others' presentations today that it should be considered; it's got to be part of a multi-agency approach; it can't be a standalone service to get the the best outcome for that person, and it needs to be alongside psychological support, which has been echoed in the other presentations today and the research, and it should be offered as standard really. And there is a need for trust and respect at all of the stages of the the commissioning, the connection, the meeting, the actual decluttering process, the following up; trust and respect needs to kind of flow through that whole process because without that, um, and I think the people we've spoken to in their quotes illustrate that the interventions can be a really traumatic experience for the person with hoarding behaviors. That's that's all for me; I'm just going to hand over to Jen um just to to let you know what's happening with next steps with the project. Oops, missed one.
Thanks, Maria. Losing my voice from earlier. Um, so uh that gives you a flavor of what we found, just a small part of the research, but uh next we're working up a set of guidance documents that we've uh provisionally called What to Ask a Declutterer. So there'll be three versions of these, uh, one for a person with hoarding behaviors or their family and carers thinking about working with a PD, another for local Authority staff who are choosing or commissioning the PD, and the inverse uh version for PDS who uh are being asked those questions by people with hoarding behaviors or local authorities. Um, we'll also be sharing a summarized version of the Project's findings and writing up in uh more in-depth articles as well on specific areas. And uh, we're also hoping to be involved and preparing for the hoarding awareness week in May, so hopefully we'll see uh some of your faces again then. Uh, so all that is left to say is thank you very much for listening. Uh, these are our email addresses if you want to get in touch and uh over to James for any questions.
Yeah, so hello everyone. Um, yes, so as as James uh said, my name is Sam. I'm currently doing a PhD here at the University of Birmingham. And yeah, today's been such a good day to hear from hear from yeah everyone; there's been some really great ideas. So I've been working in uh kind of the hoarding research space um for coming up to four years now. I work alongside the community community interest Cloud's End, which was the uh First Community interest company set up to um yeah uh support those who face hoarding issues. And yeah, it's it's really encouraging to hear how kind of different different parts of the country are responding to some of these challenges. I I'd encourage you—the Cloud's End has some great uh expertise—so do get in touch with them um kind of if you if you've got more more questions. So yeah, as James said, I'm currently doing my PhD all around how we can better understand uh treatments and how we can best support those who have who who face these hoarding difficulties um from a psychological perspective. I'm a I'm a big psychology fan; potentially uh some may go as far to say psychology nerd. I think psychology is great; I think it's fascinating, and I think there's lots we can learn from psychology and and apply to hoarding. And I I I really wanted to emphasize as I begin my presentation that the hoarding most certainly is a a a psychological disorder; it's it's a big issue, and I think lots of the talk today has uh kind of made it super clear that like any other psychological issue and any other mental health condition, speedy solutions are very hard to come by, if not impossible to come by. These things take time, and they take yeah uh collaborative working as as as Jenna Maria just uh brilliantly said. And collaboration in Psychology is is super important; collaborating at events like this where we're able to collaborate with other professionals from different sectors is super helpful; it helps us to understand—for example, helps me as somebody whose background is all in Psychology to understand kind of what the role of a social worker is day-to-day, what the challenges and pressures they are facing—and so helps bring that multi-discipline team together, helps us work. And one of the other key areas of collaboration is experts by experience. Now, as I'm sure you're all aware, experts by experience in in issues in mental health issues are those who who experience these issues. So in this case, the experts by experience are those who face hoarding difficulties, who display hoarding behaviors or or or experience issues relating to hoarding. And experts by experience are useful in all sorts of different sectors; they've been found to be valuable in commercial sectors, influential in kind of developing useful disability technology, but also in in developing useful and and uh helpful mental health services. And as has kind of continuously popped up in the chat today, one of the key things and key difficulties when it comes to hoarding is engagement from from clients or or or patients, whatever your service calls them, because it can it can often be quite tricky to get that. And one of the things that we find is in Psychology is really really important for uh engagement with mental health services is what we call acceptability and feasibility. So acceptability in is the perception from a service user that given intervention is agreeable, palatable, or satisfactory. So in the past, for example, where psychology has uh used therapy techniques such as flooding for phobias, which is where somebody would be placed in a room with their uh their biggest fear, if you like, and would have to remain there until they, you know, got better, they learned not to be scared, um, while there is some evidence for some people that worked, it's not a very acceptable intervention. I'm sure there's many people on this chat who perhaps have a phobia of spiders, and the idea of being locked in a room with a very large one would be uh not an acceptable uh way of getting around that. So it's through collaboration with people that we can begin to better understand how we can make interventions feasible and acceptable to people. Without collaborating, we're shooting in the dark; we're guessing. And and this is in as as I kind of alluded to—this is increasingly important in in cases of hoarding because the research has shown that hoarding interventions suffer quite a lot from a lack of treatment motivation. So we see very low uptake in psychological treatments for hoarding, and often even if they are uptaken, there's often very high dropout rates. And this can usually be the case because somebody has been uh pressured into taking part in an intervention uh by another, and kind of that that internal motivation to take part isn't there, and so there's not this consistency. But we find that improving acceptability in psychological intervention allows us to have fewer dropouts, and collaboration in turn improves the acceptability, which would then allow for um improving the the dropout rates that we see. And insight is something that we we have to really be aware of in hoarding. Um, around 50—one study found that around 50% of those who face hoarding issues um uh don't are are do not recognize the uh conditions of their home um accurately. And so it is undeniably a challenge as professionals to work alongside people that don't see the things the same way you do. And actually one part of psychology that is really helpful in this is a phenomenon called psychological reactants. Now, I I experience this or at least used to experience this fairly regularly, but it's that feeling when you're just about to do something and you have every intention of doing it, and somebody then tells you to do it. So uh I don't know if you've got every intention of of addressing the the pile of washing up that is piling up in the sink, um, but as soon as someone says, Sam, can you address that uh can you do the washing up for me? That's suddenly the last thing I want to do, um, because I want to maintain my freedom and ability to make responses. And this is the first thing that I wanted to kind of give to everybody today is a little a little working tip. By collaborating with service users with clients, we can best understand their perspective of things. If rather than saying we must clear x, y, and zed, by instead being collaborative, by being uh inquisitive, by being yeah interested, we can better—we can perhaps rephrase that and say, well, how do you think this uh room…
Is how, how, how happy are you with the state of your home? And, and this actually means that there's not that psychological reactance; there's not that instinct to fight back and defend one's freedom of decision-making. So that's, that's just one way that collaboration can be really helpful. And thinking collaboratively about hoarding can be really helpful. And as shown by the previous presentation, shame and guilt has a massive part to play. Understanding that, uh, somebody has a lot of shame and guilt around their hoarding can allow us to approach it differently. And collaborating with somebody to understand that is, is really key. Understanding that clearances can be traumatic for people if done badly is really, really important. And so, yeah, collaboration in hoarding is key. And as kind of Jen and Maria brilliantly showed in their, in their research they just presented, technology can, can facilitate this collaboration in, in new and creative ways.
Technology is now everywhere; it can be low cost, it can be convenient, it can be around the clock, it can reach more people than ever before, and it can be more accessible than ever before. And this use of technology can take some different forms. You could have apps that work alongside traditional therapies, such as facilitating in-home activities and, uh, gathering, uh, information or understanding about somebody's behavior, um, as well as online support groups. I know few online support groups have been mentioned in the chat, and I know we used, they're used at Cloud's End as well to help support clients. And they really help to work around some of the self-stigma, the shame and guilt through discussion. So self-stigma is the stigma that one places on themselves that then results in an increased sense of shame, which can often be a barrier in accessing treatment. But online support groups where somebody doesn't feel necessarily they have to put their whole selves out there to take part can be a really good way of getting around this self-stigma. It means they're not quite as vulnerable and perhaps will be better able to express their thoughts, feelings, and, uh, emotions in these settings. And these support groups have been, uh, particularly, yeah, valuable for hoarding. I know even just in the work with Cloud's End that there's an online support group, and some of the testimonies, while I don't have any with me, um, are, are, are really, really fantastic.
Another form of technology that can be really helpful, and this is where some of my research has come, comes into this, is the, is the use of VR. So virtual reality can be particularly useful in psychology. It maintains a certain realism of an environment while maintaining control, and it's been used in social disorders, social anxiety disorders, and addiction disorders. Kind of imagine with reality you can control, um, uh, virtual people in a way that you can't control real people. You can quickly change the number or the density of a crowd, or in addiction disorders you can expose somebody to certain addiction cues, for example, drug paraphernalia or, um, kind of access around alcohol use, but they're in a safe environment; there's a virtuality headset. And, and these are things that have been done in the research. And this, this, this control and, and safety can provide a really new and exciting way of thinking about different things, and in, in this case, poor, poor hoarding. So virtual reality has a promising outlook for addressing some of the strong attachments that we see in hoarding. So people have, tend to have very strong attachments with their possessions, and this causes some extreme, um, emotion, and, and that comes back to why forced clearances can quite often be unhelpful because they're forcefully breaking these strong attachments that people have with their possessions. And you have phrases, uh, one, one, uh, research study when interviewing participants and talking about, and, uh, the researcher kind of suggested the idea of discarding some books to somebody that they, they had never read, um, they responded by saying, "I just feel like I want to die," which is, may seem like quite, um, an extreme response. But by understanding, by collaborating with people, we can understand kind of the intensity of these feelings, and, and therefore the way they need to be addressed. And virtual reality shows some real promise for allowing us to understand how participants experience their home, uh, differently from others, and, and how the, the virtual reality can, can kind of give a new insight. So but the question is, does this insight, could it lead to distress?
So in my project, what I wanted to do was to understand how, um, those who face hoarding difficulties make sense of seeing their home recreated in virtual reality, but with a massively reduced amount of clutter. So this all happened during COVID, so the University's, um, guidelines around what we could do when gathering participants was, uh, quite strict. So we actually got participants to send photos of a room of their home, and we would then, I then recreated them in virtual reality with a massively reduced amount of clutter, and then used this to, to recreate their home and then sent them off a headset with their, their, uh, new virtual home, uh, loaded into it. So this is an example of what the virtual environment looked like, um, as you can tell, this is a kitchen; it's not cluttered by any means, but nor is it necessarily super tidy, uh, as you can see there are some clothes on the floor here, there is kind of some, uh, books that you might consider a little out of place, a clothes horse, um, or, or, or era, just, just here as well, um, so it's not, it's not necessarily spotless, but it is, um, yeah, massively, what nobody would consider it cluttered per se, um, same room from a different angle. As you can see there's some, uh, flaws in the, in the virtual environment, uh, as you can see out the doors here, it just the rendering just stops, and there's kind of an eternal, uh, virtual void, uh, but anyway, that was how the participants experienced, uh, the virtual reality.
And when interviewing participants after, uh, their experience in the virtual reality, we found some really interesting key themes. So the first thing that people explained, talked about lots was the, uh, quality of the virtual reality. As, as you may have been able to tell, we use quite a cheap virtual reality solution, but nevertheless, lots of the participants explained how the accuracy was quite good. In virtual reality, in psychology, we talk about a sense of presence, that feeling of being in the virtual environment, um, rather than feeling like you're wearing a headset, if that makes sense, um, the virtual reality was considered realistic, and the participants even mentioned that they forgot about the real environment around them and instead tried to interact with the virtual one. One participant mentioned that they actually tried to sit down on the virtual sofa, um, which could have ended badly, but thankfully it didn't. Really interestingly, we also saw that the virtual environment helped people envisage goals. One of the participants said that being in the virtual environment, uh, it helped them to see what they're aiming for because sometimes they can't pitch that very well, and they often discussed, "I want to tidy such and such corner to make it look like how it did in the virtual reality," which was really, really interesting. There were also a number of, um, emotional responses, both negative and positive. So the virtual environment was considered calm and smooth, uh, soothing, um, but also importantly motivating and encouraging. This kind of poses some really exciting promise for the use of technology in hoarding by increasing that insight, which may then in turn increase motivation to, um, take part in more traditional therapies as well, uh, which is really interesting. We also saw an awareness of negative emotions. So one of the participants talked about how, uh, seeing the room decluttered reminded them of what caused their, their hoarding behavior to start in the first place, which in their case was a particular traumatic life event, and they talked about how seeing their room decluttered made them super aware about how the clutter does distract from their, the trauma that that kind of took place there. And lastly, there was a, there was a big importance placed on the small details; the kind of having some of the personal items were key. There were a few personal items that I included in the virtual reality, um, that by accident happened to be really important to the participants; things like a particularly sentimental mug and, uh, for another individual, a bicycle that were really important. These items, the participants explained, made it feel like their home; it kind of continued an attachment to that space. But a lot of the clutter was gone, and it allowed the environment to feel not sterile, but, uh, lived in, and, and that was something that kind of, uh, just happened by chance. And in, in future, if, if this, if I was to ever do this kind of thing again, I would certainly look to ask people and try and find out what, what things interest people have.
So where does this leave us in terms of support in hoarding? I think it shows how important both this study, other studies, and the one that Jen and Maria talked about shows how important increasing collaboration with service users, uh, clients, those who struggle with, with hoarding issues, experts by experience is, because by putting their experience at, at the forefront of research and policymaking, but also the small day-to-day decisions around, uh, what items go, what care plan is best, we actually will be better, in better promoting people's, uh, sense of free will and autonomy and contributing towards a better quality of life. By putting these things at the forefront, we can have more creative ideas around how to address issues and also learn the whole time. Unfortunately, while psychology tries its best to paint a picture of how, uh, particular things work for, for kind of everybody as a whole, actually, in, even in these things, everybody is different, everybody is unique, um, and it's only through collaborating with people both on small and big levels, uh, through just being inquisitive, asking questions, and having a person-focused rather than a possession-focused approach that we can really take this forward. And finally, also there needs to be continued research, uh, by best understanding how, um, people can, yeah, uh, best support those in these difficulties. By better understanding some of the psychological mechanisms that underpin hoarding, we can go forward and better support people, which will also make many, many jobs much clearer, much more straightforward, as we're no longer guessing about what things might work for people, but we can go into this having kind of psychology support our understanding of hoarding disorder as well. And I'm hoping to do that through some of my own research in, uh, yeah, trying to understand different, um, approaches to supporting. So thank you very much for taking the time to listen, and I would love to hear any of your questions. I've just popped these email addresses here, um, for, yeah, if, if you want to get in touch with either myself or any of the Cloud's End team as well. So yeah, uh, are there any questions?