'Vital' help needed for Britain's 1.4 million people living with hoarding disorder

The British Psychological Society warns that more psychological support is vital for those who hoard, ITV News Reporter Sam Holder reports with words by Producer Elliot Turnbull

"My safety, my family, my security". That’s how Lynn Howells describes the objects that fill her home.

The items range from dozens of teddy bears to tin boxes more than half a century old, piles of clothes that haven’t been worn for decades and even a 1950s jukebox. 

Within Lynn's house, there are different zones - those which she can use properly, like the kitchen and bathroom, and those which are completely inaccessible due to the sheer number of things crammed in.

Hoarding disorder has dictated Lynn Howells' life and like many of the 1.4 million people who have it in the UK collecting objects began as a coping mechanism.

When she was 11, she struggled with intense loneliness after being sent by her family to a boarding school.

"Some weeks I would get a letter (from her parents), some weeks I wouldn't," she said. "I did feel then that I was on my own."

Some people start to hoard to deal with child trauma. Credit: Hampshire & Isle of Wight Fire and Rescue Service

In a way, 'things' became a way to fill the void she felt. For others, collecting objects becomes a distraction following grief caused by the death of a loved one.

Despite affecting so many people, only 5% of those with hoarding disorder come forward to get help, according to the British Psychological Society.

Often that’s because those with the disorder don’t realise or accept that they have a problem. 

'Clutter-blindness' means that after a while people become immune to the clutter surrounding them in their own homes and eventually stop noticing it.

What may look like mounds of rubbish to a stranger can become almost part of the furniture to a person who hoards.

Experts have developed a simple test to help identify hoarding, which involves comparing a person’s home to a series of photographs. 

Is someone you know a hoarder? Use this test to help find out:

Professionals and charities use the image below to identify people who hoard. If your home looks like four or above on the scale, you should seek professional help. 

The British Psychological Society warns that more psychological support is vital for those who hoard and that anyone who exhibits signs of hoarding should be offered a psychological assessment as soon as possible. 

Charities hope people will be able to use the scale to identify that they may have hoarding disorder. Credit: Gail Stekeree and Randy Frost

"For too long, psychological support has been too slow to reach those with hoarding difficulties," said Dr Stuart Whomsley, who is leading the campaign.

"Hoarding disorder also merits its own specialist psychologically led service. People who are diagnosed with hoarding disorder can experience serious psychological challenges which can often have a knock-on effect and lead to feelings of loneliness.

"They can feel uneasy about hosting visitors and then don’t wish to visit other people’s homes as they know they’ll have to reciprocate. It can be a vicious circle," he added. 

As well as unresolved grief and trauma, hoarding is also linked to other mental health conditions: 58% of those who hoard have either ADHD or bi-polar disorder. 

There are also serious safety concerns, as a hoarded home is at a much greater risk in the case of a fire.

Research from ITV News has found that the number of people who’ve died in hoarding-related house fires has gone up by 38% over the past five years. There has also been a 30% increase in the number of hoarding-related fires altogether.

Deaths related to hoarding have risen 38% in the last five years. Credit: London Fire Brigade

Part of the reason is that fires in hoarded homes spread faster and release more toxic gases. Escape routes can be blocked by the piles of objects. 

Many fire services carry out regular checks with people who they think may be vulnerable and offer extra support to people with hoarding disorder - including free smoke alarms and bespoke safety advice. 

But in order to help, the fire services need people who have hoarding disorder to reach out and tell them.

And that goes back to the heart of the problem: many who would be diagnosed as having hoarding disorder have never had an assessment and are unable to see for themselves that their collecting has become out of control.

Charities want more people to come forward for help

Often it is support groups that provide that first step towards understanding that there is a problem.

Jo Cooke is head of Hoarding Disorders UK and also trains professionals on how to help people with hoarding behaviour

There are now over 25 groups across the country, organised by HoardingUK and Hoarding Disorders UK.

Jo Cooke is head of Hoarding Disorders UK and also trains professionals on how to help people with hoarding behaviour. 

"A lot of people don't know there are support groups for people seeking help," she said.

"Support is there over a phone call, there is also an icebreaker form, which is a form to be able to take to a medical professional to help have a conversation about having too much stuff."

Jo added that language can play an important role in helping people with hoarding disorder, especially for those just coming to terms it.

"It's all about wording. 'Clean' may provoke someone and make them feel guilty, so we talk about rearranging," she said.

You may have noticed that in this article we use the terms 'those who hoard' or 'people with hoarding disorder'.

Jo says the term hoarder can be a very stigmatising and emotive word. 

"By saying you are a hoarder, you are evaluating everyone’s personality based on their behaviour. There’s so much more to a person than that one thing."

What should you do if you or a family member display hoarding behaviours?

There is an 'ice-breaker' form that can help people recognise whether they have hoarding behaviours.

The aim of the form is to help provide the starting point for a conversation with a GP or professional.

If a person is in denial about potential hoarding behaviours, the 'clutter scale' photograph above can help demonstrate that there is a need for help.

Find a local local support group near you here.

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