Experts in treating the complex causes of hoarding disorders are to congregate in Edinburgh for the first ever international conference on the condition.
Earlier this year the World Health Organisation (WHO) included hoarding disorder in the latest edition of its International Classification of Diseases.
The decision is important as it means that hoarding is now defined as a distinct mental health condition, allowing UK patients to be formally diagnosed by their GPs for the first time.
Dr Stuart Whomsley, who co-authored the British Psychological Society’s guidance on hoarding disorders, hopes that the inclusion by the WHO will begin to transform the way patients are treated.
“When I was first working with people it would be considered to be a lifestyle choice, a health hazard or laziness,” he says. “People could label it in a pejorative way.
“Now it has the ‘status’ – for want of a better term – of an illness, people can say ‘I’ve got an illness, it’s like any other illness, I need treatment for this and I can see my GP’.”
Reliable statistics on hoarding disorders do not exist, but estimates suggest that as much as 4 per cent of the population may be affected in some way. Those who work in the field believe it could be higher.
Linda Fay, the director of conference organisers Life-Pod and the UK’s only certified hoarding specialist, says it is still a “hidden disorder” and wants to raise awareness among the public, government and local services.
“People don’t openly talk about it because they have feelings of embarrassment and shame,” she says. “They also think that if people know the kind of conditions they live in, they’re likely to be threatened with eviction.” Such interventions, often ordered by councils or social services for health and safety reasons, can prove catastrophic for people with hoarding disorders.
Ms Fay says she decided to set up Life-Pod after hearing “horror stories” of people being evicted or subjected to enforced clear outs which only “added to their trauma”.
She knows of some people who have taken their own lives as a result of heavy-handed actions by the authorities. “It can be that serious, so it needs to be taken seriously,” she adds.
The most common items gathered by people with hoarding disorders are books and newspapers, but some people do not favour anything in particular.
Dr Whomsley and Ms Fay have treated patients who stockpiled machine parts, tools, electronic components, ornamental dolls, clothing and model aeroplanes.
More recently, computerised hoarding has also become common, where someone stores huge amounts of electronic data – emails, documents or pictures – that they are reluctant to delete.
Both Dr Whomsley and Ms Fay stress that many factors can contribute to hoarding behaviours, but that many patients have suffered a childhood trauma or have shown signs of the disorder early in life.