The politics of mental health

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anxiety, Depression, discrimination, employment, isolation, mental health issues, OCD, post, relationships, stigma, stress, suicide

The politics of mental health

Charles Walker starts to sit down next to me, rises and pulls up another seat. “Let’s have this fourth chair here,” he says, and pulls it up between us. I think he is joking. But he isn’t: without the fourth chair it would be very hard for him to do this interview, maybe impossible.

A week before we meet, the Conservative MP stood up in the House of Commons TV cameras and the Hansard scribes who record Parliament’s proceedings,and talked about living with obsessive compulsive disorder for more than three decades. “I am delighted to say that I have been a practising fruitcake for 31 years,” he began. “On occasions it is manageable and on occasions it becomes quite difficult. It takes one to some quite dark places.”

One of the most obvious manifestations of his condition is his compulsion to do everything in fours: wash his hands, switch lights on and off, go in and out of a room. “My wife and children often say I resemble an extra from Riverdance as I bounce in and out, switching lights off four times.”

Walker is a compelling orator and his speech was full of poignant detail and humour. But as we chat it becomes obvious that he is painfully serious about that fourth chair. “You train yourself not to give in to it, but it’s agony: it’s like fingernails …” he trails off, the image of the chalkboard left hanging.

Walker was speaking at a debate on mental health in the House of Commons one slack Thursday afternoon, when few reporters were watching carefully. But somewhere between fellow MP and former Labour defence minister Kevan Jones putting down his notes and admitting for the first time in public that he had a history of serious depression, and Walker explaining that he leaves crisp packets lying around because he can’t face having to wash his hands multiple times, the outside world began to listen.

Two more Tory MPs also spoke: former GP Sarah Wollaston, who has experienced depression, postnatal depression and severe anxiety attacks, and ex-City banker Andrea Leadsom, who has also gone through postnatal depression. The subject #mentalhealthdebate soon began trending on Twitter. Many of the responses echoed my own: admiration and thanks for what the MPs had done from those with their own mental health issues – in my case clinical depression and anxiety.

The purpose of the debate, tabled and led by Conservative MP Nicky Morgan, was to raise the profile of mental health as an issue, and address the stigma and isolation felt by the vast majority of patients. Morgan opened with some statistics: one in four people will experience a mental health problem at some point in their life; it is the largest cause of disability and accounts for 23% of the “disease burden” on the NHS, yet only 11% of its budget is spent treating it. And despite all that, the general topic of mental health had not been debated in the main chamber for at least four years. “Just imagine if this were a physical health condition,” she added. It is hard to imagine there would be so little attention.

During the next couple of hours MPs raised important issues: advocates accompanying mental health patients when they discuss their treatment with professionals, Criminal Records Bureau checks, funding, cuts to social services and complaints about assessments of whether they are fit to work. Tory MP Gavin Barwell talked about his new private bill, supported by all parties, that will remove laws that institutionally discriminate against people who have had serious mental health problems – for example, barring them from being jurors. Health ministers, Conservative Simon Burns and Lib Dem Paul Burstow, noted some concerns, and individual MPs no doubt plan to keep campaigning on the other points they raised in the debate, until they succeed or retire.

But if the afternoon has any lasting impact on those with mental health concerns, it will be because of the unsentimental but unsparing personal stories of those four MPs. And I wondered how these courageous people felt afterwards: did they wake up full of regret the next morning or in the following days? How did their family, colleagues, friends and constituents react? “Whether it affects how people view me, I do not know,” Jones said. “And frankly I do not care because if it helps other people who have depression or who have suffered from it in the past, then good.”

Once we are both seated next to the two empty chairs, and start talking, Walker points out his local newspaper, the Cheshunt & Waltham Mercury. The front page headline is: “‘Fruitcake’ MP praised for bravery.” Does he regret using the word? “Absolutely not,” he says. “I have been involved in mental health for the best part of seven years: part of the problem is people are terrified of it and they shouldn’t be. That’s why I thought it was important to show a lightness of touch.

“Since it’s talking about my own condition, I can talk about it how I like. If we didn’t laugh in my own home about my own particular manic phases, life would be so much more difficult.”

Walker and Jones both spoke of guilt driving them to speak out, and of feeling like frauds if they did not. “Actually, I felt better for it,” says Jones when we meet later. Once the emotional high of the debate had subsided, however, did they regret what they had done? “Yes,” admits Jones, “but the response afterwards shows it was the right thing to do.” Walker says he had “little twinges” when he saw the Mercury, but says that strikingly his health was good in the days afterwards: if he had made a big mistake, the stress would have manifested itself in stronger symptoms. “This is my driving passion and I hope it’s given me more credibility to talk about it, and more of a platform,” he adds.

Aweek after the debate, the four MPs between them have had more than 1,000 emails, letters and phone calls. Many colleagues have thanked them: among 650 MPs, there must be more than four who have personal experiences of mental health – especially given that politics attracts driven people who have to live under the stress of constant scrutiny and frequent criticism. Others will know of it through parents and siblings, sons and daughters, partners and friends.

Most of the responses, though, are from ordinary people: MPs see many who are struggling with mental health problems at their weekly surgeries. The debate seems to have have encouraged them to open up, or simply thank the MPS for “helping make it OK”.

Jones tells me about a woman he met in his North Durham constituency. “In her late 50s to early 60s, a middle-class lady came up to me and said she’d had depression for 10 years, and was an alcoholic for seven. She said: ‘What you have said has given me strength.’ If I’d passed her, I’d never have guessed. If you walk down the street, you can’t tell who has mental health issues.”

The hidden nature of most mental illness is a large part of the problem: it is ubiquitous, yet those who admit to their condition feel that they are treated differently, isolated or even ostracised. Or fear they will be.

Research by Time to Change, a charity tackling the stigma surrounding mental illnesses, suggests four out of five people with mental health problems experience stigma and discrimination, and half of those said it happened every day, every week or every month. This stops a great many from socialising, looking for or returning to work, or having a relationship. Perhaps the most powerful testimony was from the 35% of respondents who said stigma had “made them give up on their ambitions, hopes and dreams for their life”, and one in four who said it had “made them want to give up on life”.

Even before she spoke out in parliament, Wollaston had been more open than most with patients and constituents about her experiences of postnatal depression and panic attacks, perhaps because of her background as a GP. By contrast, Walker had only told one person in politics about his illness since being elected MP for Broxbourne in 2005, and Jones, an MP since 2001, had not even told most of his family. “I come from a very traditional background: my father was a miner, and I was a full-time trade union official, so we don’t talk about these things,” he says.

There are other more common pressures though. “You don’t want to be defined as a ‘mental health person’,” continues Jones. “Also you have this fear about what is perceived as a weakness: will it affect people’s views of you, but also make you vulnerable? Actually my depression has made me stronger.”

In her speech, Wollaston spoke about how “at the happiest time of my life” after the birth of one of her three children, she was sometimes left feeling “your family would be better off without you”.

“I am absolutely sure,” she said, “that my own experiences of depression and recovery – recovery is very important – caused me to become a much more sympathetic doctor, and I hope that it made me a more sympathetic and understanding MP, able to recognise the issues in others and respond to them appropriately.”

By speaking out, the MPs all hope to help others by showing the world that most – not all, they stress, but many – people with mental health experiences can lead interesting and fulfilling lives when they have had help controlling and dealing with their issues. As well as having had early careers, getting elected and campaigning for mental health charities among other causes, all four MPs have made their mark on politics. Jones was a minister of defence for one of the world’s military superpowers; Walker last year won the Spectator’s speech of the year award for his intervention in the debate about a referendum on the European Union: “If not now, when?”. Wollaston became the first Conservative prospective MP selected, not by the usual route of a panel of local party loyalists, but through an “open primary”, in which every registered voter in the Totnes constituency could vote for who they wanted as their Tory candidate, and she more than doubled the party’s majority in 2010; while Leadsom is one of the party’s most active thinkers, already strongly tipped to be promoted into government. They follow in a dignified tradition, begun in recent memory by the Norwegian prime minister, Kjell Magne Bondevik, who took time off the country’s top job for depression in 1998.

“A lot of people will be saying: ‘If MPs can talk about it, maybe I can start being a bit more open,'” says Walker.

Not just a boy thing: how doctors are letting down girls with autism

Tags

aggression, anxiety, Depression, Eating Disorders, emotions, gender, mental health issues, misdiagnosis, OCD, relationships, social exclusion, stress, tics, vulnerability

Not just a boy thing: how doctors are letting down girls with autism

Annette Lewns has more experience than most of the different ways in which boys and girls with autism are treated. Her 14-year-old son, Ryan, was diagnosed when he was three and a half. But doctors refused to diagnose her 12-year-old daughter, Rachel, until she was nine.

“What angers me is that for years I was dismissed by doctors purely because Rachel was a girl. Ryan was spotted very quickly because the autism symptoms that doctors look for are so male-orientated,” said Lewns. “But Rachel’s autism was hidden unless you knew where to look for it.

“Rachel could express herself, she had a couple of friends and understood emotions if someone was at an extreme: really upset or really happy. But you didn’t really have to look too hard to see she didn’t genuinely understand emotions or relationships: she was just mimicking scripts and scenarios from TV.”

“The doctors failed time and time again to see through her coping strategies. I fought for years but I was confronted with a wall of disbelief and scepticism. They were simply unable to understand that a girl might present differently to a boy.”

While Ryan’s condition was acknowledged by their local authority, and he is now at a specialist school, Rachel continues to struggle at a mainstream school. “Ryan is being taught all sorts of tools and techniques to cope with his condition but Rachel is not,” said Lewns.

Estimates of the ratio of females to males diagnosed with Asperger’s syndrome or high-functioning autism varies from 1:4 to 1:10. No one understands this gender disparity: whether women really are less likely to be on the spectrum than men – or whether doctors are failing to spot the disorder in women.

Opinions are divided: Richard Mills, director of research at the National Autistic Society (NAS) says he “would not be surprised” if the true ratio was twice as high, with one woman on the spectrum for every two men. Dr Judith Gould, director of the NAS’s Lorna Wing Centre, thinks the ratio could be even narrower, with 1:1.5 female:male.

We may soon have an answer. Mills is leading the UK arm of a two-year international programme, Autism in Pink, which will look at the condition in women, focusing on the stress, social exclusion, vulnerability and misdiagnosis they suffer.

It follows concerns about reluctance to diagnose women. One recent survey by NAS found girls may wait longer than boys for a diagnosis and are more likely to be misdiagnosed: just one-fifth of girls with Asperger’s syndrome who responded to the survey were diagnosed by the age of 11, compared with half of boys.

The UK is leading the research side of the programme. Last week, Mills signed up the first two of the 12 women with Asperger’s he needs to work with researchers over a two-year period.

“I hope the programme will be the first step to ending the current trend for gender to be a barrier to diagnosis and post-diagnostic support,” he said. “Because research in the past has largely concentrated on males, the way we understand autism tends to be very much based on the experiences of men and boys with the condition. People are reluctant, for some reason, to make a diagnosis in girls and women.”

This reluctance is exacerbated by the fact that girls and women with Asperger’s or high-functioning autism can be more adaptive than boys: they are commonly better at hiding things or seeming more sociable, masking what doctors traditionally think of as the signs of autism.

But the strain of trying to appear “normal” can be immensely stressful. Gould said it results in “many of the girls we see having developed secondary problems such as anxiety, eating disorders or depression”.

This can also mean that misdiagnosis of girls and women is also a problem. The survey found 42% of females had been wrongly told they suffered psychiatric, personality or eating disorders, compared with 30% of males.

There is also the problem that the gender difference becomes a self-fulfilling prophecy: because more males are diagnosed than females, it is their symptoms and behaviours that experts have studied. The so-called screening tools, developed to help diagnosticians spot the syndrome, focus on culturally “male” interests, such as computers, trains and cars, rather than things more likely to appeal to a girl, such as animals, soap operas or fashion. Gould is rewriting the NAS’s diagnostic interview for social and communication disorders to include “gender-neutral” cues.

Even when an accurate assessment is given, however, it is no guarantee that the necessary support and help will materialise: the NAS survey found women continue to struggle after diagnosis, with half of females with Asperger’s or high-functioning autism – compared with 39% of males – saying it made no difference to the support they received.

Lucy Clapham, 25, spent years being turned away by doctors who insisted “girls don’t get autism” and told her to simply “act normal and read female magazines”. “I am certain that my diagnosis was delayed because of the fact that I am a girl,” she said. “My mum first noticed something when I was about six but our GP laughed at the suggestion. I’ve gone to counsellors, doctors and psychiatrists but all of them, including my teachers, refused to see I had classic autism even though I had casebook symptoms: almost no speech until I was five, no friends, hours spent staring at the washing machine, lining toys up and flicking my fingers in front of my eyes.”

When she was 12, Clapham became violent, aggressive and developed multiple tics, obsessions and compulsions. “I stopped talking outside of the house and sunk into an inner world,” she said.

After two more years and about eight counsellors, Clapham’s GP referred her to a child psychiatrist. “She was adamant that girls didn’t get autism, they just had ‘traits’,” said Clapham. “She claimed that I just needed to ‘act normal’ and that by buying nice clothes and reading women’s magazines I could learn to be ‘normal’. The only diagnosis I received from her was depression and anxiety.”

After leaving the children’s mental health service “none the wiser and possibly with more mental health problems than when I had arrived”, Clapham was sent to the adult mental health service and, after a long battle, to the Maudsley hospital in London, where she was finally diagnosed with autism, Tourette syndrome and obsessive-compulsive disorder.

“I was still refused services, however, partly because there were none available and partly because our local authority was not willing to fund an out-of-town, specialist autism service,” said Clapham. “I ended up getting sent to a college for the blind where I developed more mental health problems and became very aggressive because no one understood me or my autistic behaviour.

“When I was 20, I ended up in care because my mother couldn’t cope with my aggression and anxiety.”

Clapham stayed there for three years but still struggles. “Despite my diagnoses, some people still seem to believe that autism is a ‘boy thing’,” she said.

There is no clear understanding about how many girls and women are being missed – or wrongly diagnosed – and for how long. But that may soon change: the first neuroimaging analysis of women and men, with and without ASD, has been under way for the past two and a half years at King’s College’s Institute of Psychiatry (IoP) and the Autism Research Centre at the University of Cambridge. It’s hoped this research could provide the clues. The final stage of the project is about to begin, with results expected in months.

“It’s very exciting,” said Dr Michael Craig, a senior lecturer and honorary consultant at the IoP’s department of forensic and neurodevelopmental sciences. “We could well be looking at gender-specific treatments for Asperger’s being developed in quite a short period of time.”

What is autism?

First identified in the 1940s, autism is a developmental disability that lasts a lifetime and affects someone’s interaction with other people – how they communicate with and relate to them. It is a spectrum condition, affecting some more seriously than others. While some lead fairly independent lives, others suffer serious learning disabilities and need extensive support. Many who have an autism spectrum disorder can be badly affected because they have trouble processing sounds, sights and smells.

Around half a million people in the UK have autism, according to the National Autistic Society (NAS). What causes it is still unclear. “There is strong evidence to suggest that autism can be caused by a variety of physical factors, all of which affect brain development. It is not due to emotional deprivation or the way a person has been brought up,” the NAS says. Genetic factors are assumed to be responsible, and scientists are trying to pin down which genes are involved. Genetic testing to enable earlier diagnosis is therefore still a long way off.

Many people are not diagnosed until they reach adulthood. A recent NAS study of more than 8,000 people with autism, parents and carers found 52% were initially misdiagnosed. One in three adults with the condition say they have developed serious mental health problems because they have not received enough support to help them cope with the difficulties autism brings.

Hoarding: The art of letting go

Tags

hoarding, OCD, Therapy

http://www.independent.co.uk/life-style/health-and-families/features/hoarding-the-art-of-letting-go-7562760.html

Oh, I wonder how that got there … What is it?” Layla Jade (not her real name) has picked up a folded silver chewing gum wrapper, that has fallen, somehow, onto her carpet. She holds it close to her face, squinting, trying to work out its origins and whether it can be salvaged. After a few moments she places it carefully onto a side table.

A glamourous-looking woman, aged 58, Jade is a recovering hoarder. She is a member of the UK’s first therapy group for hoarders, run by Orbit Housing Group, a community housing organisation based in Coventry. Her homely living room is now covered with comfy cushions and cat-themed knick-knacks, but it was once almost uninhabitable. A narrow path from here to the kitchen and on to the bedroom was forged through towers of clutter, piled high in each room.

“I can’t throw anything away. I’m just sentimentally… I’m attached to everything.” She sighs. “It could be a piece of paper a friend has written on and I won’t get rid of it.”

Each object here has a story, from the print of Jack Vettriano’s “The Singing Butler” hanging in the bedroom – a whimsical scene of a couple dancing in formal wear on a beach, given to her by her mother for Christmas – to the bejewelled ruby lampshade, purchased on a whim on the way to a blood test at the local hospital, to the less practical things, like her collection of 22 dressing gowns, mostly in animal prints, or the pile of perfumes that she has owned for 40 years and never used. “I have all this, it’s perfectly nice, but I won’t use it and I can’t get rid of it. When I think about throwing things away, I think, ‘but I got that when I was at so-and-so place,’ or, ‘my ex brought me that.’ Oh, if I could get him out my head…”

There is surprisingly little research available on hoarding, so little that the current version of the Diagnostic and Statistical Manual of Mental Disorders (the psychologist’s bible) doesn’t recognise it as a disorder in its own right, merely a possible symptom of obsessive-compulsive disorder (OCD). But new research has shown it is a separate problem and its sufferers will show “persistent difficulty discarding or parting with possessions, regardless of the value others may attribute to them”. Jade’s distress at the thought of throwing things away is a symptom that’s very hard to overcome. The limited data available says hoarding affects around three per cent of the population, although this seems a conservative estimate, as hoarders tend to be very secretive about their hoarding and only those who admit to it and seek help can be monitored.

“Clutterers don’t like to be called hoarders. It makes you think of an old miser,” says Arthur Porter, 63, during the group therapy session, “we’re not greedy or anything like that.” Porter has “what is termed as high-performing clinical depression”, he explains. Like Jade, whose difficult marriage and persistent depression led to agoraphobia and then hoarding, he also has a collection of different, yet interrelated, problems. His father was bi-polar and also a hoarder. After Arthur’s father died, he found bits of wood and thousands of rolled-up plastic bags in the loft, one inside the other. Right in the centre of the layers of bags were rolls of old one-pound notes from 1982. “I’m like him, but he was better with plastic bags. I think it’s genetic,” says Porter.

It could indeed be genetic, says Gail Steketee, a professor at Boston University School of Social Work and an expert in researching the disorder. “We know that there does seem to be a genetic link, but so far, we don’t have good information about whether hoarding is more likely to occur in someone who grew up in a hoarded home, but was not genetically related,” so it could also be a learnt behaviour.

Arthur certainly emulated his father. He collected plastic bags, but also books and DVDs. They piled up in his home until the piles became towers and the towers touched the ceiling. Then one day, “I had a little fire,” he says, “in a student cooker as the main cooker packed up.” The fire department arrived and saw there was just a foot-wide path to walk to some rooms in the house – others were blocked completely with his “collections” (over five tons of books and DVDs) and a “great load of plastic bags”. Porter was used to navigating through the mess, but the fire officials didn’t approve. “I said, ‘are you going to fine me?’.”

That’s when Orbit became involved. Porter attends the group session once a week, where he and the other members are assigned tasks like doing the washing-up or throwing away one DVD that they don’t like. It’s a very gradual, often frustrating process, but without it the members risk becoming imprisoned in their homes, not to mention the health and safety risks like vermin and blocking fire exits. “When Sheree [one of the Orbit helpers] went away, I went to pieces,” says Porter, with a nervous chuckle. “I need Orbit to cope. It’s someone there who knows where you are at.”

Another group member, Beverley Drummond, 60, denies she has a problem. “I’m not a hoarder, I’m a collector,” she says. “My mum died four years ago. She wouldn’t allow a DVD player in the house, but now I have my John Wayne and my Octonauts … OK I’ve got some DVDs but I’ve boxed them all up. OK, there are mice, but they’ve not caused me any problems.” A helper at the group interjects, saying, “And how many teddy bears have you got?”

“Well I collect them to cheer me up. I’ve cut down, though. I used to buy four a day, now I only buy them if they’ve got a nice face.” It transpires that Drummond has collections of calculators and mobile phones, too – in fact she collects anything that her mother used to disapprove of. Her collection of bears is close to 900 and growing, and the DVD collection caused a problem for the housing association because it filled several rooms; it was a safety hazard.

Orbit is working with a team of therapists and researchers from Coventry University to come up with a “toolkit” to give out to fire services and housing organisations across the country on what to do if they encounter a hoarder. Darren Awang, an occupational therapist working with the hoarders’ therapy group says that through its work, Obit has found that hoarding can be triggered when a controlling parent dies, as in Drummond’s case, and also by more general sudden traumatic events.

“Many local councils will try to empty the property when they encounter hoarding, but this can cause the hoarder inordinate distress and then they often revert back to the behaviour anyway,” explains Cathy Sharman, a staff member at the self-help group. She says it requires a more “long-term approach” and that a combination of methods is needed to help, because each hoarder is different.

Part of the reason hoarding seems more prevalent now is due to profile-raising shows, such as Hoarders, an American TV series that goes into hoarders’ homes, and Channel 4’s Cutting Edge series, which recently highlighted the problem in a documentary, called Obsessive Compulsive Hoarder. But another reason could be that the ready availability of cheap goods is actually triggering the impulse to hoard in more people than before. For someone who grew up with rationing, or in a poor family, it requires a totally different mindset not to be seduced by cut-price offers. So does today’s environment make it harder for hoarders?

“Yes, I think it does,” says Professor Steketee, “the media urges us to buy, buy, buy and markets are flooded with cheap items. We have become a throw-away society and many people react against this, wanting instead to save and repair, rather than be wasteful. Others are attracted to the colours, textures and shining objects. This cannot be helpful to people with even a slight tendency to hoard.”

Certainly, Jade’s love of disposable fashion will strike a chord with many people. “I feel I’ve got too much stuff, especially clothes,” she says. “It’s ridiculous, ordering it all out of catalogues when I know I’m not going out anywhere, I’ve got nothing to dress up for!” Then why, some might wonder, does she get it? “Because I look forward to it coming through the door.”

Although the group is helping them with their disorders, there is a sense that the compulsion to hoard will never completely die out. Jade will still feel sentimental about her possessions, Drummond will want to collect bears and Porter will continue his father’s legacy, maybe one day becoming as good as he was with plastic bags. It’s as essential and ingrained for them as going to work or doing grocery shopping. Plus, as Porter puts it, it’s not all doom and gloom. “It would take something out of your life if you just stopped,” he says.

Hoarders need help to change their behaviour

Tags

hoarding, OCD

http://www.guardian.co.uk/society/2012/jan/03/hoarders-help-clutter-change-behaviour

It was a daily battle for Arthur Porter even to get to his front door. Towering piles of books, papers, magazines and shopping bags filled his hallway, and put much of the rest of his house out of bounds. Living without hot water and not daring to put on his gas fire because of all of the clutter surrounding it, Porter says he knew his hoarding had got out of control. “It had got to the stage where I was almost living my life like someone in the middle ages. I knew things couldn’t go on as they were but I couldn’t see any light at the end of the tunnel,” he says.

It was only when the fire brigade was called out after his faulty cooker started smouldering that Porter, 63, a former accountant and teacher, began to get the help he needed. He was referred to Orbit Care and Repair, a home improvement agency that supports older and vulnerable homeowners. It helped him to release equity from the home in Whitley, Coventry, where he has lived all his life, to pay for home repairs, and to start clearing the clutter he has accumulated over decades.

“When I first went to visit Mr Porter he could hardly open the front door,” says Cath Sharman, deputy manager of Orbit. “There were piles of stuff up to the ceiling in places. He would bring in shopping and forget he had bought it. Not just food, but electrical gadgets and books. The neighbours had put in an insurance claim and it turned out an overflow pipe was dripping down from one of the bedrooms he couldn’t get into. He didn’t have a workable kitchen and his health was suffering.”

According to the University of London’s institute of psychiatry, between 2% and 4% of the population are affected by a tendency to hoard, and it appears to be a growing problem. “I’ve been in this job for 23 years, and it’s more common now than it ever was before,” says Kathie Martin, senior agency manager of Orbit. “We set up a specialist support service because with the number of cases we were seeing our arms just weren’t big enough to cope.”

Despite TV programmes such as My Hoarder Mum and Me, and Obsessive Compulsive Hoarder highlighting the issue, there is a real lack of consistency in the support on offer. Yet without the right support, hoarders become increasingly reclusive, are often shunned by their neighbours and are threatened with legal action or, if they are tenants, with eviction. And there are serious safety risks from fires and vermin infestations.

Orbit has teamed up with Coventry University for the first research project in the UK examining hoarding. It hopes to develop better ways for professionals to help. Council, charity and fire-service professionals have been offering their expertise, and the next stage of the project will involve interviews with hoarders about their behaviour. Darren Awang, senior lecturer in occupational therapy at the university’s faculty of health and life sciences, says he hopes the research will uncover more about the issue nationally.

“This is really managed at a local level and although there are people like Orbit doing very good work, the efforts have been piecemeal,” he says. “We are trying to find ways of managing the problem more effectively. It doesn’t do anyone any good to just go and clear a house on an enforcement basis, because the behaviour just manifests itself again and the issue doesn’t go away.”

The experience at Orbit suggests that the most severe cases of hoarding may be triggered by a traumatic experience such as a bereavement. Porter says the roots of his hoarding go back to his youth. “My dad was a clutterer and it just seemed natural to me,” he says. It spiralled out of control once his father died, his mother went into a home for older people and he battled with depression, which went undiagnosed for years. Although mental healthprofessionals recognised he had a problem with his home, he says he had just been told to sort out the mess himself, until Orbit came along.

For Brenda and Jack Smith, their hoarding escalated after they became mostly housebound because of ill health. They had spent years washing out of plastic buckets because their bathroom was unusable – but work on a new wetroom funded by equity release could not be carried out until Orbit had arranged for their home to be cleared.

“I accumulated clothes and I had about 60 pairs of shoes I’d never worn. If I saw something I liked I got it in all different colours,” says Brenda, 70. “I think it’s because when we were young we couldn’t buy stuff, as we didn’t have the money. So when you get a bit older and can start buying things, you go a bit mad.” She gets emotional when she talks about the difference clearing her house has made. “Before, it was terrible – we couldn’t manage and we were having falls because of how much stuff there was everywhere. The change has been lovely.”

Sharman says many cases of hoarding go unreported for years because people are unsure of where to go for help, or sometimes are too embarrassed to ask. “We learned a lot with Mr Porter,” she says. “When we got the council in to clear his house and a lot of people came in to take things away, it was horrendous for him. We learned you can’t do it like that. These people have not died, they still live there and you have to do it at their pace. We have to build a rapport and get a relationship going.”

Walking into the downstairs of Porter’s house, only a few carrier bags and a couple of boxes bear witness to his hoarding issues. But he is still sleeping downstairs as there is more work to be done upstairs. “He’s come a long way,” says Sharman. “But he still needs support. It can be a long process.”