Gallery: Mother of Ipswich hoarder defends her daughter against those who claim she is simply slovenly as she seeks professional help

Hoarding affects between two and five per cent of the population. Suffolk's first ever hoarding conf

Hoarding affects between two and five per cent of the population. Suffolk's first ever hoarding conference takes place on October 9 at Henley. A cluttered house in Suffolk. Lofty Heights at work - Credit: Archant

It’s easy to think people who hoard things are just lazy or a bit eccentric. But the truth is far more complex. Ahead of a groundbreaking conference in Suffolk to address the problem, Sheena Grant finds out about the devastating effects it can have.

Hoarding affects between two and five per cent of the population. Suffolk's first ever hoarding conf

Hoarding affects between two and five per cent of the population. Suffolk's first ever hoarding conference takes place on October 9 at Henley. A cluttered house in Suffolk - Credit: Archant

When Gayle Brooks remembers her daughter Karen’s happy and carefree childhood, it’s hard not to shed a tear for the isolated, lonely and troubled woman she has become.

For the last seven years Karen has been a hoarder.

The change happened so gradually that at first her family didn’t notice it. But little by little Karen’s world shrunk until she could no longer hold down her job in an insurance office, her friends disappeared and her home, littered with piles of unopened mail, newspapers and the detritus of daily life, became off-limits to family members. Karen simply will not let them, or anyone else, past the front door.

“It’s extremely distressing,” says Gayle. “My daughter used to have an independent life, a clean and ordered home, a job. She loved music, the theatre, going out and had lots of friends. There was a lot of fun there. But when her husband died, the grief never left her. She stopped working and bit by bit everything changed.

Hoarding affects between two and five per cent of the population. Suffolk's first ever hoarding conf

Hoarding affects between two and five per cent of the population. Suffolk's first ever hoarding conference takes place on October 9 at Henley. A house in Suffolk after being decluttered - Credit: Archant

“One of the first times I really understood what had happened was when a neighbour called because she was concerned about the mess and I and my other two children went round to the house. It was knee-high in papers, unopened post and discarded food packaging. It was very dirty. It wasn’t that she was going out and deliberately collecting things to bring home. It was the debris of normal life.

“Our first reaction was that things had just got a bit on top of her and she needed help clearing up. If I’m honest, there was also a bit of annoyance at how untidy she had become and a feeling that she was being lazy. We got it cleared up but a few months went by and it was exactly the same again.

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“After a while we realised she didn’t want anyone clearing up and then alarm bells started to ring.”

Gayle has come to realise that many myths surround hoarding. The first is that the person with a cluttered home or a ‘collection’ of things they can’t bring themselves to let go of is slovenly.

Hoarding is a highly complex condition, encompassing issues of loss, attachment and mental ill health. It causes isolation, loneliness and can even be life-threatening – accidents and fires are far more likely in cluttered homes. It also brings people into conflict with their neighbours or landlord. If in rented accommodation, it can lead to eviction and even make routine gas safety checks impossible.

“It is absolutely not laziness,” says Gayle. “My daughter is an intelligent, educated woman. She had a happy childhood and comes from a loving home.

Other people would probably look at her and say she should just pull her socks up or even get a cleaner if she doesn’t want to do it herself. But it’s not that simple. Someone once explained it to me as the hoarder’s home being like a bird’s nest – somewhere they feel safe – and that’s the only way I can begin to understand it.”

Gayle has agreed to share her family’s story in support of Suffolk’s first hoarding conference, due to take place at Henley, near Ipswich, on Thursday October 9 and organised by Lofty Heights, a decluttering social enterprise, and Orbit Care and Repair.

Hoarding: Behind Closed Doors aims to raise awareness about the problem as well as getting a dialogue going between the organisations that come into contact with hoarders so they can work together to offer effective help.

“I don’t know if we’ve got enough understanding of how to get into the head of a hoarder, which is what this conference is about,” says Gayle. “It is vital for trying to find a way forward to help people who are affected.”

Karen, now 37, still refuses to acknowledge there is any problem. She sees her siblings intermittently and although she has retained regular contact with her mother, she gets angry if the subject of the state of her Ipswich home is raised.

“She has stopped people going into her house and is very particular about her privacy,” says Gayle. “In many ways her intelligence is part of the problem. If we try to involve social services, because she is so eloquent she manages to persuade them that everything is fine. She has created a kind of fantasy existence that is so complete I wonder if she believes the fiction herself. Hoarders are often very good at presenting a face that is so believable it masks the problem.

“While her everyday life has virtually shut down she has created a very active virtual life on social media, where she comes across as jolly and happy-go-lucky. Even if you met her in everyday life she is still good at appearing quite ‘normal’.

“You always hope there is a professional person who can intervene and knows what to do. We got her a social worker and had to involve environmental health because the rubbish had caused a problem with rodents but if the individual refuses help, as Karen did, ultimately the case gets shut down and nothing is done.

“The family is left with the crazy situation where their loved one is living in the most unbelievable conditions. There is mess is in every room. There are papers, food wrappers, all manner of things that most people would just consider rubbish. People see hoarders as nuisance neighbours or difficult individuals and while that may be true on one level, there’s far more to it.

“Karen doesn’t have to live like that. It isn’t as if there isn’t anyone who cares about her. She needs psychiatric help but I don’t know the answer as to how we get it against her will. It is a desperate situation. There is a real need to try and understand how to help people who say they don’t need help, when clearly they are struggling. That’s where I’m hoping this conference will be able to help. There will be so many families in the same situation as us. You feel hopeless about it.”

For Olive Quinton, Gayle’s story is all too familiar. She started Lofty Heights as a loft clearance service but soon discovered some houses were so cluttered there was nowhere to put things emptied from the loft.

“We saw the conditions people are living in and the difficulties they encounter,” she says.

One client had been living without heating for years because the gas connection had been cut when access couldn’t be gained for an annual gas safety check.

“We had to work with this woman over a long period, building up her trust. In the end, her life was transformed. She got her heating back and I still get cards from her saying thank you. If services think about how we can work together we can make a real difference. The whole reason for this conference is that we know hoarding is an issue in Suffolk, it affects people from all walks of life and we are not entirely sure of the true extent of it. It is about starting a conversation about what is needed and how it might be best tackled.”

It is no coincidence that the conference takes place in the same week as World Mental Health Day.

“Many people we work with often experience some form of mental ill health,” says Olive. “Hoarding can take many forms and encompasses a lot of issues from early childhood loss, to bereavement and debt.

“Often people think we are going to come into their home and chuck everything in a skip. Nothing could be further from the truth. Going through a collection in just one room could take a long time – we might spend days talking about the significance of various bits of paper or card. Every case is different and complex.”

Orbit, one of the country’s largest housing providers, carried out research into hoarding in partnership with Coventry University in a bid to identify the best ways of addressing the issue and improving the lives of those affected. It resulted in a ‘toolkit’ and training package being developed for housing officers and other professionals that puts the individual at the heart of the service. Rather than just de-clutter a property, a strategy that has been found to often exacerbate the client’s condition, staff now use therapeutically-designed interventions and relapse prevention plans.

More than 100 people are expected at Thursday’s conference, which will include discussions, activities and talks from specialists at Orbit, Lofty Heights, Circle Housing, Serious Development, community support service Stepping Stones, Merton Borough Council and West Yorkshire Fire and Rescue. The day will end with a World Café session, which will capture ideas and experiences of delegates to help to build a future strategy.

* Some names have been changed to protect identities

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