Rising demands and complexity.

Practitioners note the increasing demands placed on professionals when supporting hoarding cases that transcend organization boundaries. Here the “complex social needs, mental health needs, and a history of trauma” (Sasha, Social Prescribing Link Worker, NHS) that often accompany hoarding clients and the specific emotional and psychological components that are difficult to train for:

“They’re complex problems as usually I would say in my very limited experience […] they’re usually quite long term, perhaps psychological, emotional distress and disturbance over years. And that makes them quite complex. So it’s not just a case of you know, tidying up some boxes and throwing out stuff. It’s much more complex because it’s to do with what all those things mean to somebody and so that’s I think that’s yeah, it’s just complex really and emotional, psychological and you have to be very tactful and careful and have a lot of time. Time and complexity, I would say the two things”. - Verity, Social Prescribing Link Worker, NHS.

“Every case is so unique, no one can teach you to deal with that” - Chloe, Housing Enforcement Team Leader, Council.

Our present data also sheds light on the continuing intensification of hoarding cases from a professional’s case-management perspective over time and more recent trends in increasing acuity. As Amanda, a Housing Association worker, puts it:

“…the nature of the referrals and requests for help and support that come in are becoming more acute.” - Amanda, Care Housing Manager, Housing Association.

Participants emphasized that the current social and economic climate, including events like COVID-19 (e.g., using possessions to replace social interaction; “It’s just boxes and boxes and rooms full of Amazon boxes piled up”; Jan, Community Safety Officer, Fire Service) and the Cost-of-Living Crisis (i.e., seeing all things as valuable), has further intensified the complexity of cases they handle as professionals. Participants from a variety of sectors reported on the challenges of helping people who hoard and increasing need:

“I think the nature of the requests that are coming in is definitely more severe. Before, when I first started, it was people wanting signposting to practical support like gardening, housekeeping, shopping, and social activities. But certainly, since COVID […] they found that their support networks just disappeared overnight […] People are desperate for support.” - Kate, Community Navigator Coordinator, Voluntary Sector.

This increased need is being compounded by the perceived vulnerability of service users who hoard, where a reticence to seek help is seen as an additional burden to staff in terms of needing to be more proactive with communication and planning over a long period of time.

“Hoarders, you don’t hear from. We’re the ones bugging them because you know they want to stay alone, they don’t want to be bothered. They don’t want the hoard cleared often. So actually, you know, with a hoarder case, you could quite happily sit there for six months and not do anything, and they wouldn’t be on your back with their other work. You can’t go six hours without being nagged, so it’s very, very different. But that is why they’re so vulnerable because they’re quiet. So actually, it makes them more vulnerable, because if we’ve got all these loud people shouting at us, they always will take priority and we have to remember you know the silent ones are just as risky and, you know, we need to focus on them as much, even though they don’t want us there. So there’s a big difference”. Chloe, Housing Enforcement Team Leader, Council.

Differing perceptions and priorities.

Nevertheless, while professionals share the overarching pressure, the manifestations of these challenges vary significantly in terms of perceived problems and risks to be addressed. For example, housing professionals are primarily concerned with property conditions, mental health practitioners focus on well-being, home helpers/nurses deal with tasks such as wound care and meal preparation, and environmental health experts and the fire service prioritize pest control and fire safety. Moreover, client capacity and cooperation are often complicated by a lack of trust, at times limited insight and the highly stigmatising nature of the condition leading to feelings of shame and reticence.

Housing and fire:

“The kitchens are where most fires start. So that’s a real focus for the fire service, the fire service focus on two things, means of escape and the condition of the kitchen and if we can get back in again, I think that’s what I would measure success […] Getting a property cleared, evicting somebody. I don’t see those as they’re not long-term goals with serious hoarders” - Madison, Local Housing Manager, Housing Association.

Environmental health:

“We’re committed to getting it to that point where we’re satisfied. That doesn’t mean necessarily a full house clearance […] if there ain’t a public health risk, you know, then we would walk away” - Richard, Senior Environmental Health Officer, Council.

Home helpers/nurses:

“There is a big difference I think to social workers, you know, social care and perhaps health because health care … which I understand because you’re going in, you’re probably doing leg dressings, you want a sterile environment. And you’re probably having to kneel down to do people’s dressings on their limbs. So therefore, you don’t want to kneel on a very squelchy carpet” - Kate, Community Navigator Coordinator, Voluntary Sector.

Psychology and mental health practitioners:

“So you might have a range of tools you use but they have to apply that to that area…with people who hoard… we can’t visit people in their own homes, we can maybe get them to bring something in that they don’t know what to do with, so you know, we can get them to do some practical work but we can’t really ascertain the level of clutter in people’s homes, and also the way people hoard is very very different” – Lily, CBT therapist, NHS.

Often, any needs that are not met by these sectors are passed forward to social care teams; common given that cases are often passed between sectors and where responsibilities and priorities of each organisation are not distinct:

Social care:

“And as I say, lack of services […] so other professionals might walk in and go “oh God. This is terrible. You really need social care support, social care, you need to do something about it”, but going back to capacity, that person can choose how they live, we can’t do anything about it, so I think it’s that unrealistic expectation of what social care can do” - Natasha, Social Worker, Council.

This diversity can complicate the establishment of priorities and protocols when working with individuals who hoard and the development of a joint approach, agreeing on the primary concern and main stakeholders to be involved. Thus, while the severity of hoarding cases has increased across all organizations, the way professionals experience these challenges, the perceived presenting problems and risks, varies. Complicating matters further is the uniqueness of each hoarding case (see above), making it essential to establish distinct priorities and action plans for every client.

Client needs vs. wider community.

Professionals frequently find themselves at the crossroads of managing clients’ issues (e.g., clutter and unsafe living conditions) while also addressing the clients’ mental health needs and willingness to engage with service providers. Moreover, client-centric needs have to be delicately balanced with the responsibilities imposed by their respective organizations. For instance, Benjamin, a Regional Resident Support Manager within a housing association, sheds light on the complexities of this balancing act:

“At the same time, we have a duty of care as a landlord to make sure we’ve got a property that’s maintained and is in good condition. And if that then breaches those, then it’s the tenancy sort of issue, then it becomes a problem. So, then there’s barriers if you like in terms of what we can do. You know, I can’t do the best work if they’re not willing to engage, there’s no support services that can help the individual, engage the individual. Then we go down the enforcement route and then you know, then we’re left with a position of stalemate where you know, effectively, the resident could be forced out of their home, yeah. And what will they do? They will leave their property, abandon their property and then start all over again” - Benjamin, Regional Resident Support Manager, Housing Association.

This balancing act is a vivid illustration of how professionals face competing responsibilities, not just to the hoarding individual (and the associated issues with navigating a lack of support to “help the individual engage”), but also to the specific organisation and wider community. Neglected property conditions can adversely affect neighbours, leading to concerns about vermin infestation and structural damage, which only exacerbates the ongoing challenges posed by hoarding behaviours. These wider environmental concerns distinguish hoarding clients from broader mental health cases where failure to adequately address the problem has considerably wider implications beyond the individual.

Conversely, mental health professionals in our sample, who are trained in psychological models and frameworks expressed the perceived gap in not having a direct understanding of the home environment and are not connected directly to other teams involved, and therefore feel unable to walk alongside to support people in the decluttering activities that might be needed. Here Grace discusses the need for more support and to be more adaptive to working with others on graded exposure, and de-cluttering of homes, activities which are often overwhelming for clients to embark upon:

“It was just so overwhelming for her, the whole house was just full of stuff and just going through it and, so, our support workers do do some graded exposure with people who are anxious … because we don’t expect those people to be able to just suddenly walk to the shop or get on the bus, we do that with them. But then, actually, who does that bit with the people who hoard? …I could do the work on really understanding what’s happening and share a formulation with someone and they could do a graded exposure plan but there often needs to be a bit longer and practise strategies you’ve learned and that’s quite difficult because like, you know, someone telling you the exact diet or exercise plan you have. But then you also need a personal trainer you know, because it’s so overwhelming a task” – Grace, Consultant Clinical Psychologist, NHS.

Client capacity and wants vs. risk to professionals.

In a similar vein, professionals are further tasked with navigating the needs of their clients while ensuring their own safety. Hoarded properties present hazards such as vermin infestation or structural integrity compromised by hoarding. As Karen, a Team Leader in the Voluntary Sector, pointed out:

“Yes, so from a care perspective, when you’re delivering hands-on care that’s been provisioned by the social services, it’s obviously it’s incredibly challenging because […] people don’t have a lot of insight into their disordered behaviour, if you like. It’s people’s homes so we’ve got to respect how people want to live. But at the same time, it’s our workplace. So then you’ve got the sort of health and safety in the workplace issues like coming to play” - Karen, Team Leader Community Wardens, Voluntary Sector.

It is important to note that whilst professionals must carefully navigate issues of capacity and consent when assisting individuals with hoarding tendencies and conducting property clearance, workplace health and safety standards impose different requirements that must also be met. Furthermore, several of these sectors do not have hoarding case management explicitly outlined in their roles or responsibilities, leaving them without specific guidance on how to address these challenges and therefore present additional psychological tension for front-line staff (see also theme 3).

Client behaviours vs family members’ needs.

While professionals navigate the home environments of clients, they may also encounter challenges arising from additional family members residing in the hoarded property. These family members may have their own health needs which are exacerbated by the hoarding conditions within the home. Staff may feel they are unable to adequately address issues without taking into account other family members in the home, which conversely they may feel is outside of their remit. Karen provided an example:

“There was one case we went into where this lady, incredibly vulnerable lady. She had dementia, very poor mobility. Needed full care, you know. And she lived with her. Well, her daughter lived with her. So, it was the lady’s house. And the daughter lived, and it, the hoard, was the daughters. She was a massive problem for her and to the point where you know, it was affecting this lady’s house. She couldn’t. She couldn’t. You couldn’t fit a bed in the room. So, the lady couldn’t sleep in a bed. She had to sleep in a chair, and this was causing all sorts of problems. Health problems with her legs and leg ulcers and things like that. And in that circumstance and to be fair to the daughter she was aware of this, and she said mum needs her feet up. I can’t, you know, but I need to get her recliner chair, but I can’t” Karen, Team Leader Community Wardens, Voluntary Sector.

Thus, there are specific challenges of working with people who hoard that are distinct from service sector limitations (i.e., scarce capacity and resources) centred around establishing key priorities for working with people who hoard. Alongside this, professionals need to balance client needs and capacity with wider responsibilities and concerns and therefore all decisions are a compromise where the ideal course of action can be “like shifting tectonic plates” (Alice, Social Prescribing Link Worker, NHS). This means there are multiple things at any one time that need to be considered by a professional working with people who hoard. This multifaceted challenge of managing hoarding varies across professional groups and underscores the complexity of establishing clear priorities, and the necessity of multi-agency collaboration and external support; the challenges and consequences of which are discussed in the next theme.

A culture of referrals and the consequences for the voluntary sector.

Professionals in our study report tensions arising from the complex interplay of responsibilities among different sectors, which could lead to frustration, a sense of helplessness, and poor MDT working. These tensions contribute to the protracted nature of hoarding cases and a lack of ownership and responsibility from any single service. Dane, a Patient Flow Coordinator, illustrates the complexity of navigating across different services:

“I said it sort of falls between this crack between three different services. You know, social care, housing and health. And it just seems to fall. It doesn’t fall between because of the nature of the it, it falls between all three of us and so occasionally you can feel like it’s being bounced around and not getting done because nobody wants to take it on because it’s particularly complex and laborious or they have an objection because in their professional opinion, it’s not their responsibility, it’s yours. And in our professional opinion, it’s not our responsibility. It’s housing. And so, it can feel like it just goes round and round a bit until like because somebody please take responsibility for this patient, you know it’s not getting any better sooner we get something in there”. - Dane, Patient Flow Coordinator, NHS.

Alice, extends these understandings:

“And we understand about capacity in everyone’s capacity is quite stretched, but it’s like sometimes you just want to know where can you go with this because you’re concerned about this individual human being. But sometimes when they’re not known to someone. You know, so you get to know this person. There’s this human in front of you you’re worried about. But when it’s just a name, and do they tick these boxes? It’s it’s easier. For all we know, it’s not our roles our you know it’s not. They don’t meet these criteria. So therefore, according to the legislative framework, but actually no one’s black and white [researcher: yeah]. Everybody’s quite complex and you need to work a bit more creatively sometimes to be able to get them the help they need [researcher: Yeah]. So yeah, it can. It can. It can cause some difficulties in working with those agencies”. Alice, Social Prescribing Link Worker, NHS.

Consequently, the voluntary sector often bears the brunt of these multi-agency issues, further complicating the collaborative effort. Kate, a Community Navigator Coordinator from the Voluntary Sector, expressed her frustration with the prevailing culture of signposting and referrals:

“I think you know there is a lot of pressure on professionals to signpost to something else [researcher: Yeah]. And often it is to the voluntary sector. And I find this quite frustrating at times that instead of, you know working in a multi-agency approach that it is very much like ohh it’s not our responsibility.” - Kate, Community Navigator Coordinator, Voluntary Sector.

Kate, highlights not only the increased burden being placed on the voluntary sector because of increasing demand and lack of dedicated pathways for hoarding cases, but also the perceived marginalisation of their role within wider collaborative team efforts, with statutory and health sectors dominating decision-making processes despite the extensive role those from the voluntary sector play in hoarding cases:

“I find it quite difficult cause I do find representing the voluntary sector you don’t have an equal participation in some of these groups. You know, it is very much taken over by statutory and health. And yeah, I do think sometimes our role is marginalised”. - Kate, Community Navigator, Voluntary Sector.

The need for increased psychological understandings and support.

Most people interviewed highlighted the importance of providing mental health support, but some reported a sense that the necessary psychological support services are often lacking. Benjamin raised the issue of a noticeable gap in mental health provision:

“Other support services are required. Whether that be as I say, mental health or whatever. You know, the reality is within the mental health team, there’s not anyone. And there’s not a team that that deals with hoarding, you know …. And again, that’s nationwide, but I don’t think that’s, you know uncommon but obviously it is a disorder, and it is you know it does need help and assistance and there just seems to be a lack of funding available for this type of work that’s required”. - Benjamin, Regional Resident Support Manager, Housing Association.

Participants in our study often reported that they did not feel equipped with the skills necessary to manage hoarding cases. As noted by Karen:

“Unless you are properly a mental health professional, you can’t […] you would need to do a psychology degree I think to properly understand it”. - Team Leader Community Wardens, Voluntary Sector.

For others the need for more training and support in specialist evidence based psychological therapies and strategies was paramount to improve the confidence and skills of practitioners when supporting people who hoard:

“It’s training needs, just knowing from experts what are the current psychological models that people draw on, different strategies that people use when they are going into people’s homes and de cluttering… how you might adapt things” – Grace, Consultant Clinical Psychologist, NHS.

“It’s like a lot of in our sort of area of work, any sort of support area or psychological therapies or any like that. There’s quite a bit about understanding the condition or assessing the need [researcher: Mm-hmm]. But there’s there’s not so much on, so what can we do to help this person [researcher: yeah]. And I feel like with the hoarding, in the whole area of hoarding, that’s a bit of a gap that would be good yeah. Not so much about what can we do practically, but what can we do for that person in other ways that would help them to manage themselves a bit better. So they are then in a better place to accept the help, the practical help that you can give. That’s I think where there is a little bit of a gap maybe” - Alice, Social prescriber GP surgery, NHS.

Consequences for professionals: Going above and beyond and professional blagging.

The perceived dearth of practical support often compels professionals to operate beyond their designated roles, leading to what some participants referred to as “professional blagging” where professionals find themselves “blagging each case and hoping for the best” (Chloe, Housing Enforcement Team Leader, Council) as they take on extended responsibilities outside their remit. Sasha, a Social Prescribing Link Worker, confessed to going beyond her role boundaries due to resource limitations:

“I get in trouble for doing stuff that I shouldn’t be doing so. Yeah. I mean, really, my role should be to find the resources for the person and direct them to the resources and maybe get some funding and get some outsource for some help. But because that help isn’t there, I often end up going round and physically, practically helping myself and that’s outside of my remit for my role” - Sasha, Social Prescribing Link Worker, NHS.

Kate, from the voluntary sector, shared a similar experience:

“Last year we couldn’t get in. The ambulance crew couldn’t get into somebody’s house. So social prescriber and I went with bin bags and rubber gloves, and we managed to prise the door open and there was. Well, we filled 10 black bin liners with rotting food because Tesco’s had just done deliveries and literally put the stuff in and everything was like yoghurts. It was milk that had just so yeah, so we do, we do roll our sleeves up. I don’t, I think my manager would be absolutely horrified cause this is not really part of our job” - Kate, Community Navigator Coordinator, Voluntary Sector.

The majority of participants in our study reflect on the emotional impact this has and the need for more psychological self-care support for staff:

“It gets you. I do take stuff home with me, so it’s. No, I don’t always feel prepared for what I’m going to face. I can’t just switch it off and go to sleep at nighttime. Stuff does bother me you know. I think about things when you’re lying in bed at 3:00 O’clock in the morning, you’re like because you can’t settle, you know, and you’re thinking of how somebody’s living, how they’ve gotten like that. How can I fix it? What can I do? I understand it’s a mental health condition going back to the hoarding part, the hoarders. But it also affects our mental health as well, you know, because you you’re worrying, you know, you’re stressed about it […] there’s a sink or swim situation in most aspects of the job. You know, from hoarders to people threatening me, they’re going to stab me. I’ve been trapped in kitchens” - Saoirse, Neighbourhood Response Officer, Housing Association.

“You know, cause sometimes I think, you know, the staff themselves need support. You know, this is very difficult. I mean when we have the MDT meetings, I think for any of us to walk alongside someone who is going through possibly having made the decision that they will try and change the way that they live is very time consuming. It’s very demanding on them. It’s quite demanding on the person who’s supporting them. And often I think you know that the person who’s trying to support them needs having that kind of debrief or extra support from someone else you know. It is very, very challenging and it’s often very, very long term work” - Kate, Community Navigator Coordinator, Voluntary Sector.

This emotional burden over often protracted periods of time with the additional strain of navigating unclear referral pathways highlights a need for more dedicated support and training, and for improved knowledge sharing and psychological self-care for staff.