Samira Shackle 

‘You reach a point where you can’t live your life’: what is behind extreme hoarding?

The long read: Hoarding can be distressing and dangerous. But it’s not just a matter of ‘too much stuff’ – it’s a complex condition that requires careful, targeted help
  
  

piles of disorganised items packed tightly inside a house, visible through a cracked and broken window

At a recent “hoarding panel” meeting in east London, Daniel Pearson, commander for Shadwell and Whitechapel fire stations, played attenders a recording of a 999 call in which a panicked resident reported a fire at their home. A team of firefighters was dispatched immediately, but couldn’t access the property. Pearson displayed photographs from the scene, taken after the event: the doorways and corridors were blocked by heaps of possessions, now charred and unrecognisable. The person who made the call died. Pearson told me they see this kind of case regularly. Last year, the London fire brigade attended 1,036 hoarding-related fires which led to 186 injuries and 10 deaths. It now logs the properties of identified hoarders on a database, so fire stations know to send out extra firefighters if a fire is reported in one of them.

The hoarding panel, which meets monthly, brings together senior firefighters, mental health workers, landlords of social housing properties, and housing and environmental health council officers. At most meetings, they debate interventions for specific cases: should firefighters visit and offer smoke alarms and flame-retardant bedding? Could the person be referred to a specialist support programme? Or should the landlord consider forcible cleaning or eviction? Underlying these questions is a larger one: what can we do about hoarding? The panel’s very existence is a sign of a shift in the understanding of hoarding: not as a simple matter of too much stuff, but as a complex condition that requires targeted social policies and careful, long-term management.

In the mid-00s, sensationalist British and American reality TV shows with names like The Hoarders Next Door, Britain’s Biggest Hoarders or Hoarders: Buried Alive made hoarding a matter of public fascination. These shows presented hoarding as a fairly straightforward problem that afflicts a few peculiar individuals, and that has an easy solution: tidy up. But hoarding disorder is a major public health issue. Several recent studies have estimated that hoarding affects somewhere between 2% and 6% of the worldwide population. (This makes hoarding one of the most prevalent mental health conditions; the World Health Organization estimates around 5% of adults globally have depression.) Although the NHS does not release specific data on hoarding, support workers and council officers told me that it accounts for a significant proportion of “bedblocking”, as hospitals cannot discharge people to unsafe properties. I spoke to several social workers who said it’s not unusual for them to be injured by falling possessions when they visit a hoarder’s home; they’ve learned to assess the “avalanche risk” by asking for photos of the property in advance.

Late last year, I sat in on a meeting in another London borough where a council officer ran through the costs of interventions for an individual hoarder over four years. The total came to £32,000, which included £10,000 on forcible house clearances, £10,000 on housing repairs and £10,000 on court proceedings. (It did not include the cost of the temporary housing that the resident would need after eviction.) This is a high figure, but those working with hoarders often cite one that’s higher still: £45,000, the average cost of maintaining a hoarder in social housing over the course of their tenancy.

The council officer pitched a pilot programme that would intervene at an early stage rather than waiting until crisis point. The preventive approach she described involved developing a relationship with the hoarder, gaining their trust, and making slow but lasting progress – all of which becomes impossible once hoarding behaviour is severe enough to pose an immediate safety risk, when the council has to act more quickly and aggressively.

In the US, Australia and many European countries, as in Britain, authorities tend to intervene only when a hoarder is in crisis. When intervention comes, it often takes the form of dealing with the accumulated physical objects, rather than treating the problems that caused their accumulation. But slowly, new approaches, like the one proposed by the council officer, are emerging. In the last 10 years, hoarding has been identified as a standalone psychological disorder – a move that has brought about a “total shift in perception”, says Nicole Steils, a researcher at King’s College London’s Social Care Workforce Research Unit. The recognition that hoarding is a medical condition has resulted in a growing awareness of its scale and seriousness; in the US alone, there are more than 100 organisations dedicated to tackling the problem, and Britain has dozens of support groups for hoarders. But, it turns out, understanding hoarding is not the same as curing it.

* * *

Until relatively recently, hoarding was little studied and poorly understood, viewed as an offshoot of obsessive-compulsive disorder. But it is not a new phenomenon. Perhaps the most famous hoarders are the reclusive brothers Homer and Langley Collyer, who between 1909 and 1947 filled their brownstone in Harlem, New York, with hoarded goods; after they died, 120 tonnes of assorted valuables, junk and other possessions were retrieved from their home. (For decades, hoarding was commonly referred to as Collyers’ Syndrome; firefighters on the east coast of the US still refer to a hoarded property as a “Collyers’ mansion”.) In 1947, the German psychoanalyst Erich Fromm described “hoarding orientation” as a way of managing insecurity by never parting with anything. Fifteen years later, psychiatrist Jens Jansen referenced “collector’s mania” to describe older people who have accumulated an excessive volume of objects. In the 1990s, these observations began to solidify into diagnostic criteria: acquisition of, and difficulty discarding, possessions that appear to be useless; living spaces so cluttered that they are hard to use, and significant distress caused by the behaviour.

In 2013 the Diagnostic and Statistical Manual of Mental Disorders, the influential handbook of the American Psychiatric Association, included hoarding disorder for the first time, defining it as a standalone condition, based on these criteria. The same year, the NHS formally recognised hoarding as a psychological disorder and set out guidelines for treatment. In 2018, the WHO followed suit. Not all psychiatrists were in favour of this change: some cautioned against pathologising normal behaviours, while others debated the point at which hoarding requires medical attention. “At times, we might all have problems throwing things away, hanging on to things that have sentimental value,” says Satwant Singh, a mental health practitioner and expert on hoarding. “But if you’re a hoarder, you reach a point where you can’t live your life and your home is no longer functional.”

Beyond the medical world, hoarding is still often dismissed as laziness and poor hygiene. “I get the feeling that some colleagues would rather not deal with it because they think this is about people who are dirty, smelly and weird,” one London council officer told me. Hoarding is incorrectly associated with age and poverty, but it affects people of all ages and demographics, and is common around the world. (Singh notes a major problem with hoarding in Japan.)

Researchers agree that hoarding often begins, or worsens, as a reaction to bereavement or trauma. But this is not the case for everyone: some might have learned behaviours or a genetic predisposition – one study found that 50% of hoarders have a close relative who hoards. There is also overlap with other mental health conditions: around 50% of hoarders also have severe depression, while around 20% also have OCD. For older people, dementia can cause or worsen the behaviour.

Hoarding is an unusual mental health condition because it is defined by external objects rather than solely by a psychological state: what people in the field refer to as “the hoard”. Given that people have vastly different levels of tolerance, clinicians developed a tool called the Clutter Image Rating as a way to measure the hoard. Used by authorities around the world, the tool consists of photos of a kitchen, a bedroom and a living room. Each is progressively filled with more objects on a scale from one to nine. At level 1, the rooms are fairly empty; the floor is clear with a few items on the surfaces. By level 3, the rooms look messy and items are strewn on the floor. By level 5, clothing, newspapers and rubbish are heaped on the surfaces, and the floor is almost entirely obscured. At level 9, the walls are barely visible.

Many people with hoarding tendencies never face intervention. As the Oxford psychologist Paul Salkovskis has observed, if the hoard is ordered, or if someone has space to accommodate it, it isn’t necessarily a problem. “If someone is happy in an extremely cluttered environment and there are no safeguarding issues then that’s fine – we have to accept that people are different,” said Nele Van Bogaert, who runs a hoarding support programme for a charity called MRS Independent Living, “but as soon as it starts affecting others then you lose that right.” When an entire property is at a level 4 or above, clinicians class the resident as a hoarder and the fire service considers the property a serious risk. At this stage, the hoarder might be in breach of not just their tenancy agreements and the Housing Act (which apply to social housing and private tenants), but also the Public Health Act, which applies to everyone, including homeowners.

Singh described one man he worked with who owned five properties, but was sleeping in his car as all five houses were inaccessible. It is common for hoarders to sleep on their sofas, or in a corridor, for years at a stretch because they can’t reach their bedrooms, or for them to live in freezing cold conditions or without running water because they are too embarrassed to let tradesmen into the house.

Eliza Johnson (not her real name) is a single mother based in Surrey. In her late 50s, she is a carer for her son, who is in his 20s and has learning disabilities. She describes herself as an “extreme hoarder”, and says the behaviour accelerated after a series of abusive relationships, and being made redundant while she was pregnant. “I wonder if it was fear of having nothing, a sense of overnesting,” she said. Johnson can’t get to her bedroom, so she sleeps in her son’s room while he sleeps on the sofa. She suspects that the persistent cough she has had for more than five years is due to mould. Her son constantly tells her he wants to move. “He says it’s terrible but he won’t help clear up,” she said. His refusal to help is a source of relief as well as frustration: she told me that he once accidentally threw away some valuables, and she’s nervous that he might do so again.

Johnson has two cars, one full of items – clothes, cosmetics, bags of food – never taken into the house. The other is half-full, and when it broke down recently, she had to empty it so it could be repaired. Throwing away the things in the car didn’t seem like an option, but bringing them into the house wasn’t easy either. “I had to find places for everything, and rush to do it. I stuffed a lot in a cupboard in the hall. The rest is probably on my bed, but I haven’t gone through it so I forget. I just get exhausted and overwhelmed,” she told me.

Johnson first approached her GP for help about 15 years ago. The doctor’s response was to suggest that she throw stuff out: the thing she cannot do. “I can’t invite people round,” she told me. “Friends have made nasty comments in the past, and I can’t deal with the shame.” But when she does throw something away, she feels disappointed with herself. “That’s all my hopes, the idea that I could make this, or be that,” she said. “It’s like you throw away your dreams when you chuck things away.”

* * *

On a grey morning last month, I went to a council flat in south London with Damian Simon, the founder of the cleaning company London Blitz Clean, and one of his colleagues. The resident, a woman in her late 80s, had been living in the flat for decades, but was now in temporary accommodation after a hospital discharge team had deemed the property unsafe.

We took a lift to the fifth floor and entered a narrow corridor. In the kitchen, just to the left of the front door, crockery and cookware spilled out of the cupboards. Tins of food covered every surface, their labels disintegrating after weeks sitting in water that had leaked out of the pipes. A broken washer-dryer sat in the corridor, partially blocking access to the bathroom. The bedroom had been out of use for several years, with clothing spilling out of the built-in wardrobe, covering the bed and piled to shoulder height on the floor.

For the past week, family members had been working around the clock, clearing pathways through every room and bagging up as many items for removal as they could. London Blitz Clean would finish the job. The woman’s sister, herself in her 70s, had travelled from overseas and was sleeping on the sofa. “We’ve thrown away so many unopened, brand new things,” she said. Simon nodded sympathetically as his colleague, clad in blue overalls and gardening gloves, worked quickly to ferry stuffed bin bags out of the bedroom and down to the van. “I want everything to go,” the sister said, gesturing at the living room, before sinking back into the sofa and rubbing her temples. “I’m going to need counselling after this.”

Simon scanned the different rooms, making a rough assessment of the hoard’s volume, and then stepped out of the flat to call his contact at the local authority, which was paying for the clean. He had quoted for one van-load, but this was going to be at least two: would the local authority cover the cost of a second van? He got the go-ahead. The resident’s sister watched the bags leaving the flat. “I know this thing is a sickness, but I feel angry,” she said, tearfully. “It’s been going on for years. My sister worked all her life and she never got any support. The housing department knew about this, and no one helped her, because she always paid her rent on time. How does a government allow this to happen?”

Simon, who used to be a care worker, started London Blitz Clean in 2015, after he noticed how many people were stuck in hospital because they couldn’t be sent back to unsafe homes. The company now works with councils and NHS hospitals all over the capital. Depending on the scale of the job, blitz cleans can cost thousands of pounds, and take anything from one to 10 days. Local authorities do not always pay; in some cases, they might compel the resident to cover all or part of the fee. The priority for a blitz clean is to make the property hygienic and safe rather than empty, with obvious rubbish disposed of, trip hazards removed and clear pathways established throughout the property.

The most commonly hoarded items Simon sees are clothing, books and cardboard, but cases range from one house where the owner had cameras stacked to waist height, to numerous properties where faecal matter has been stashed. (“People with very severe hoarding might feel getting rid of items like used tampons or bottles of urine is eroding their sense of self,” Singh said.)

Blitz cleaning is a temporary fix that addresses the symptoms of hoarding rather than the cause, but even hoarding specialists and advocates acknowledge that it is necessary when there’s an urgent safety risk. For the hoarder, though, the experience can be brutal and intrusive. “Just imagine strangers coming into your home and handling your property – and then remember people hoarding have got a certain relationship with the items,” said Singh.

In 2014, Edward Brown, a 61-year-old hoarder living in Blackburn, was notified by his housing association that he had to submit to a blitz clean or face eviction. (A heating engineer, unable to reach the boiler, had reported Brown’s flat to the authorities.) Brown agreed to the blitz clean, but found the process intensely distressing. As the contractors threw his belongings into a truck for disposal, they made disparaging comments. Brown saw a brand-new steamer among the items thrown away. He retrieved it, but there were many other things he was unable to save, and he immediately spent £500 on replacement goods. After the blitz clean was over, Brown received no further support from the housing association or council and slowly, his hoard built up again. (This is common; data from local authorities shows that people subjected to forcible clearouts don’t change their behaviour.) Almost a decade later, Brown is still reluctant to let anyone in a position of authority into his home.

A funny, warm and open man with a big white beard – in his words, “like Father Christmas” – Brown puts his difficulty parting with items down to an abusive childhood. “I feel protected while that stuff is there,” Brown told me. “Anyone trying to get near me has got to get through that stuff first.”

He lives with his wife, who has mental and physical health problems, and who he says does not hoard, but “collects”. She and Brown collect stuffed toys, while he also hoards games such as Lego, and electronic goods; he has multiple air fryers, microwaves, fans and old desktop computers. He hoards tinned food, buying more even if the cupboards are overflowing, and struggles to throw away objects that, in the words of the NHS definition, “most people would consider rubbish”: cardboard boxes, empty plastic bottles. Brown goes back and forth between feeling defensive – “I’ve got pathways everywhere, I’ve got a map in my head of where stuff is, so why are they telling me how to live my life?” – and desperate for change. “Why can’t I do it? Why am I struggling with this?”

As traumatic as the blitz clean was for Brown, it at least allowed him to remain in his home. Michelle Lambert (not her real name) is 63, and until last October lived alone in a council flat in south London. She works – ironically, she admitted – as a health and safety adviser, and has struggled with hoarding behaviour for most of her adult life. In late 2022, the council told Lambert they needed to carry out repairs on her flat. Tradesmen had been unable to access the property for years, and problems had accumulated: a leaking roof, damp and faulty electrics. The council boxed up Lambert’s belongings and took them to a storage facility that she could not access. Lambert herself was moved to temporary accommodation, where she remains eight months later. When she asked for a timeline for the repairs – which, she says, still haven’t begun – she was told that the delay was caused by her hoarding. “The response is always so aggressive. It’s like they’re saying, ‘You’re just rubbish, so your stuff is rubbish as well.’”

* * *

In 2014, the Care Act overhauled social care for adults in the UK by classifying self-neglect – one form of which is hoarding – as a safeguarding issue, meaning that councils and other authorities have a responsibility to protect the individual affected. (Before 2014, adults were only considered at risk if there was a threat posed by a third party.) But changes to the way that authorities handle hoarding have been gradual and piecemeal, and specialist support isn’t always available.

The NHS’s first line of treatment is often cognitive behavioural therapy – a remnant of when hoarding was regarded as a form of OCD. But hoarding-specific CBT is not usually available on the NHS, and studies have found that many hoarders are reluctant to engage with this form of treatment. Even for those who do engage, CBT typically isn’t particularly effective. Megan Karnes, the founder of Hoarding UK, the country’s leading advocacy and support organisation, described the NHS’s current approach to me as “a crime”, and said she thinks that hoarding disorder is the only mental health condition for which it doesn’t offer clear recommendations for referral and support across the UK.

Among professionals who deal with hoarding, there is growing interest in work sometimes known as “therapeutic decluttering”, which involves a practitioner talking with the hoarder, over the course of weeks or months, while helping them to clear. Karnes dislikes the term decluttering – she points out that decluttering is “not treatment” – but Hoarding UK does advocate a similar, gradual approach that combines in-home practical and psychological support. Its own year-long programme is oversubscribed. Karnes told me about one man she worked with who had a problem with hoarding newspapers. She asked him to keep a separate pile of newspapers that he had read. Gradually, he realised that he wasn’t reading them. It took 14 weeks for him to put one newspaper in the recycling. But after that, every week the recycling bin was full. “He put those stacks of newspapers into that recycling bin himself, and that’s a different outcome to clearing it quickly,” said Karnes. “We’re changing the person’s mind – we’re not coercing them.”

Jody Hake is a case worker in a hoarding programme set up by Sevenoaks district council in 2018. She says getting someone to accept help is the biggest hurdle; her rule is to offer help six times over the phone. If someone agrees, she arranges a visit, and discusses what they would like to achieve: perhaps they want to sleep in their own bed, or use their sofa. “My priority is safety, so clearing escape routes or passageways – but if they want to start with getting access to the kitchen, then we start there,” she said. Once they’ve got a shared aim, she visits weekly or fortnightly. Hake tries to strike a gentle tone that doesn’t trigger distress, while still being challenging enough that progress is made: “What’s stopping you from getting rid of that bag of socks?”

Such time-consuming and resource-intensive work can be a tough sell for local authorities, but it appears to be more effective than legal enforcement. The Sevenoaks programme has worked with just 50 people since its launch, but it has been a success: participants generally haven’t needed escalating or repeated interventions.

Brown’s local authority doesn’t have a specialist support programme, but over the last few years he has noticed that its approach has become less punitive. In December 2021, a heating engineer once again reported him to the housing association. Rather than imposing a blitz clean, his new housing officer asked how long he needed to clear the flat, and they agreed on Easter. Brown and his wife began to make headway. They used a shopping list app to catalogue the tins in the cupboards – 20 apiece of soup, baked beans, tomatoes – so they could check what they had before buying more.

But clearing the flat was slow work, and Brown felt the officials focused on the problems rather than the progress. He and his wife nicknamed the occupational therapist who visited “Two Microwaves” because of her repeated insistence that they only needed one. Being told what to do frustrated him. “They’re deciding what I need instead of letting me decide myself. What’s wrong with having two microwaves anyway?” The Easter deadline came and went. Brown struggled to sleep. He thought about self-harm. Clutter built up again. On one visit, the housing officer said the property was “the worst she’d ever seen”. That phrase rang round and round Brown’s head.

Despite Brown’s painful personal interactions with the authorities, over the past few years he has worked with his council to set up a peer support group for hoarders. In one council meeting, Brown mentioned that, like many hoarders, he was unable to access his bath. (For two years, he and his wife had been using the sink and body sprays.) In response, the council issued cards allowing hoarders to access the showers in local authority gyms for free.

In my conversations with hoarders, I noticed that they often spoke about big spans of time – a clearance that happened 10 or 15 years ago, a repair that has been needed for five, six, seven years. This sense of paralysis is one of the biggest challenges for hoarders to overcome. What Brown wants is modest: for his wife to be able to move around the house without having to walk over rubbish; for them both to get into the living room, to use the kitchen hobs and the bath. Even these aims feel out of reach.

* * *

Since the pandemic, local authorities around Britain have reported a sharp increase in hoarding cases. This increase, alongside the squeezing of council budgets and decreases in mental health and social care funding, has made supporting hoarders harder than ever. The London pilot project I saw pitched in late 2022 was going to cost £30,000 to support 15 people for four months; the Sevenoaks programme cost £68,000 in the last financial year. But there is no cheap alternative; compare these sums with the £45,000 spent on punitive interventions for a single hoarder throughout their tenancies. “Wraparound support is expensive, but the costs of not doing it are also high, financially and in terms of the human cost of loss of life,” says Sarah Hanson, associate professor of community health at the University of East Anglia.

I was repeatedly struck by how fervent the professionals working on hoarding are: not just researchers or those at specialist organisations, but firefighters, council officers or counsellors who had stumbled into the work. It’s as if once they’ve realised the scale of the problem, they can’t look away. (“I am obsessed,” one council officer told me.)

In January, I travelled to Blackburn to meet Brown in person for the first time (we’d previously spoken on the phone). He was too anxious to take me to his house. The hoard had grown over Christmas, and he said it might be unsafe. He picked me up from the station in his car, its back seats filled with overspill from the flat, including clothes and an electric fan. “Extra storage,” he said with a smile. He drove me to the cafe in the local Morrisons supermarket, and over an all-day breakfast, showed me photographs of his flat on his phone. The only area he and his wife could access was the bed, which was surrounded by boxes and piles of clothes. This was where they ate their meals, watched TV (on an iPad, as the television is buried under clutter) and slept. An abortive attempt to clear the living room meant the bath was filled. “It’s having somewhere to move stuff,” he said, zooming into a photo to show me a tub filled with plastic bottles, buckets and assorted household items. “I thought, ‘I’ll put that in the bath for now.’ It’s always just ‘for now’, until I move it somewhere else, but then it becomes overwhelming.”

Brown is waiting to hear if the council will pay for him to do Hoarding UK’s 12-month programme, which he cannot afford himself. In the meantime, he hopes his desire to change will stave off the threat of eviction that hangs over him as deadlines to clear the flat come and go. “I don’t think anyone chooses to be a hoarder,” he said. “I just want a normal life. But I can’t do it on my own.”

• Follow the Long Read on Twitter at @gdnlongread, listen to our podcasts here and sign up to the long read weekly email here.

 

Leave a Comment

Required fields are marked *

*

*