How to help the self-neglecters

Dr David Orr’s research in Social Work has informed safeguarding polices for those who self-neglect and hoard.

Stories of people dying alone in their homes through self-neglect, or living in squalid and unsafe conditions because of their tendency to hoard, are both tragic and perplexing.

While we may recognise what abuse at the hands of others looks like, self-neglect raises questions around personal choice and responsibility, and when intervention from outsiders is necessary.

The circumstances that lead to these behaviours is as wide-ranging as the kinds of help people may need to resolve them. Thanks to research by Dr David Orr, Senior Lecturer in Social Work at the University of Sussex, care services in England now have clearer guidance on effective practice that’s not just about saving lives, but also changing perceptions.

Together with his Sussex colleague Professor Emerita Suzy Braye, and Professor Michael Preston-Shoot of the University of Bedfordshire, Orr was involved in designing a study, conducting interviews and carrying out data analysis that fed into policy changes aimed at safeguarding those who self-neglect.

Lack of clear guidance

While individuals may have come to the attention of health services, environmental health agencies and the fire service, often because of accident or death, until the 2014 Care Act there was no clear statutory guidance in England setting out how self-neglect should be addressed.

Orr says: “When we began our research in 2009, we were aware that there were often no clear pathways in the health and social care system for working with those who self-neglect.

“But there had been incidents where people had unfortunately died in quite horrific circumstances, and this had really alerted the Department of Health to the scale of the problem.

“So we began to ask what mechanisms could be put in place, and what are the pathways that we can we build, so that people recognise signs of concern.”

Causes of self-neglect range from mental health issues and dementia, to sudden changes in life circumstances and physical illness. More than 8000 people every year come to the attention of the social services in England because of self-neglect.

Hoarding and depression linked

Hoarding, in which people acquire excessive amounts of clutter to the detriment of their living conditions and wellbeing, has been recognised as a psychiatric condition since 2013. It is estimated to affect between 2% and 6% of the population, and is often linked to depression.

“Simply because someone is hoarding doesn’t mean we have to go in all guns blazing, and insist on a clear out,” says Orr. “But it does involve working alongside the person and looking at how they can be supported.

“Hoarding and depression are commonly found together, and people may start to hoard because of the effects of being depressed. But sometimes the negative reaction of others to their hoarding may itself contribute to depression.”

Through running workshops with social work practitioners, and listening to their experiences and concerns, Orr and his colleagues were able to contribute to setting practice standards for helping those who self-neglect, or hoard. Often, the solutions involve creative approaches involving multiple agencies.

Working with communities and practitioners

“For those who are socially isolated, sometimes the contact starts with practitioners talking through a person’s letterbox until a level of trust is gained,” says Orr. “The problem we find with self-neglect, is that it really hits on that tender spot between respecting a person’s autonomy and helping them to recognise when they need to make a change.”

In other circumstances, the local community may raise concerns and become involved in helping.

Orr gives an example of an elderly man whose anti-social behaviour had led to him being barred from many of the local pubs. A husband and wife who ran one of the pubs didn’t bar him, but contacted social services to say they were worried about his physical and mental health.

“In this case, the social worker animated the local community –  arranging for the man’s clothes to be washed, and ensuring that he was shopping for food and eating properly. This is a good example of community-based working.”

Another successful intervention involved helping to support a man who had hoarded scraps of wood and metal for DIY purposes, leaving him no space in his own home. The social care team found him a community group in need of much the material he had gathered, and gave him an opportunity to teach DIY skills to others.

“These are the stories with positive outcomes,” Orr points out. “There are many where interventions haven’t been so successful, or it’s just come too late. We review some of those cases in the workshops to learn from what went wrong and where things might have been done differently.”

Crucially their research showed the need for adult safeguarding governance to be underpinned by legislation in order to strengthen inter-agency collaboration, accountability and commitment to safeguarding.

The findings contributed to development of  the Safeguarding Adults Boards in the 2014 Care Act, naming self-neglect a statutory responsibility to be addressed through local health and social care safeguarding policies.

“It was an-eye opener for us just how much demand there was for the training and guidance,” says Orr. “Practitioners really wanted to know more about why self- neglect happens, what can we do about it, what are now the relevant law and policy on these issues.”

But it was also rewarding on a personal level, he says. “I know I'm in a place where I can understand a lot better what might be happening for the person, rather than leap to judgments or assumptions.

“I think, sadly, that the media focus on stories of self-neglect and hoarding can sometimes fuel those prejudices rather than help to clarify them. Through speaking to these individuals, you can start to understand how their circumstances have arisen, and what they’ve endured to come out the other side.”

He adds: “I have a deep admiration for the practitioners we’ve worked with, who’ve shown persistence, curiosity, kindness, and humanity. As a researcher, it’s been a really wonderful and humbling experience.”

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