Robert had refused a community care assessment and a social worker had deemed his hoarding “a lifestyle choice” that he had the capacity to make.

The 61-year-old had a history of mental illness and was known to services for regularly lighting fires and stockpiling flammable items in his home. Care teams and housing officers would arrive to find broken furniture and electrical speakers piled high inside. Sometimes the only way to get in was climbing over a broken sofa that partially blocked the front door.

An inquest held last month found Robert’s death was accidental. However, a serious case review identified missed opportunities to intervene. Services had failed to take Robert’s mental health history into account when assessing his capacity. They had also failed to recognise that his inability or unwillingness to engage with services was a risk in itself.

Robert’s son, Alexander, accused social services and the mental health trust of “ignoring and downplaying” his father’s medical history and failing to take responsibility for his care.

The safeguarding board’s chair warned the review contained lessons around handling the “complex issues” of self-neglect and mental capacity. In response, commissioners said the inclusion of self-neglect in the Care Act 2014 had given agencies “clearer” duties to intervene.

Robert’s case occurred before the implementation of the act in April 2015 and his referral to social services was for a community care assessment, not a safeguarding intervention. The then guidance on safeguarding adults in England, No Secrets, excluded self-neglect.

The Care Act’s statutory guidance lists self-neglect as a category of abuse or neglect that may prompt a safeguarding enquiry. Under section 42, councils must make whatever enquiries they think necessary where an adult has care and support needs, is experiencing or at risk of abuse or neglect, and is unable to protect themselves because of their needs.

Social workers say the change has led to a spike in self-neglect referrals. But are services any clearer on how to handle these cases when they arrive?

‘Limited options’

Gary Fitzgerald, chief executive of Action on Elder Abuse, says the way self-neglect has been written into the Care Act guidance is flawed – “it was an afterthought” – but acknowledges that the safeguarding route has added to the fairly limited options already available to services.

Prior to the Care Act coming into force, he explains, section 47 of the National Assistance Act allowed for the removal of an older or disabled person from their home, if they were deemed to be living in insanitary conditions and not able to care for themselves.

But this was only used in extreme circumstances and was repealed under the Care Act on the basis that it was incompatible with human rights law. More often, services would look to set up some home care support and an “in-depth clean-up” with the person’s agreement.

“This was basically getting someone’s living conditions and personal care back up to a level that was not a public health risk, before withdrawing again. But in terms of intervening and encouraging people to live differently, there were not many other options. People just existed in the community and neighbours complained, which wasn’t very satisfactory.”

Adi Cooper, safeguarding lead at the Association of Directors of Adult Social Services, remembers commissioning high numbers of these cleans in her days as a team manager.

“Six months later we saw the same level of hoarding – now we know why,” she says.

“We weren’t looking at the underlying causes of why someone might hoard, and what might help them deal with it. We were only looking at the presentation and trying to deal with that.”

‘Building trusting relationships’

Cooper says social workers have historically struggled with self-neglect cases because an evidence base for intervention has only emerged fairly recently.

A Social Care Institute for Excellence briefing last year by leading self-neglect researchers Suzy Braye, David Orr and Michael Preston-Shoot highlighted some of the key issues facing practitioners. These included different thresholds for intervention between agencies, uncertainty over the law and the fact that self-neglect did not fit neatly into local authority workflows because of the time needed to build relationships.

“What we know now is that building up a relationship of trust, helping the person early to reduce the things that are causing them harm and to improve resilience and self-protection so they do not place themselves at risk of harm anymore, is more likely to work,” says Cooper.

Cooper welcomes the Care Act guidance and feels it has offered a much clearer framework for working with self-neglect, with the safeguarding system potentially beneficial where social workers identify a serious risk of harm.

“Often these cases require input from the fire service or environmental health, for example, and we know that having a safeguarding approach in terms of multi-agency engagement and involvement, when supporting someone at considerable risk, is more effective.”

‘Duty of care vs. choice’

The research by Braye, Orr, and Preston-Shoot also highlighted the challenge self-neglect poses to professional values and the conflict between duty of care and promoting choice.

This tension is present in the Care Act guidance, which says any concerns about self-neglect “do not override” the principle, set out in section 1 of the act, that any restriction on an individual’s rights should be kept to “the minimum necessary”. A decision on whether a response is required under safeguarding should be made on a case-by-case basis and “will depend on the adult’s ability to protect themselves by controlling their own behaviour,” it adds.

Mark Harvey, principal social worker at Hertfordshire council, says the case-by-case approach is vital because the term self-neglect “covers a thousand different scenarios”.

“I think in the last three years we’ve moved a little bit into a world where the person is seen as the source of the problem, but we know they’re not – it’s wider societal factors.

“These impact on the individual and then they develop choices from that, or they get driven down a route where they have no choice – it could be substance misuse, poverty, crime, abuse, the list is endless and that’s why you can’t define it.”

‘Good social work’

The first thing Harvey says he’d ask a social worker is “whose problem is this?”

“Nine times out of 10 the referral hasn’t come in from the person saying ‘I’m hoarding and I’d like to stop’ – it will have come from the ambulance service, a health visitor, a neighbour.

“They think that because the Care Act now says self-neglect is a safeguarding issue that we can just accept control and people will have a much nicer life.

“That’s not the reality and that’s not the reality of social work. There will be cases where we do need to effect some change but again you do that through good social work and use of the tools you have. You don’t necessarily do it through safeguarding.”

For Harvey, the key is building relationships and making sure the person is “absolutely” at the heart of any process, even if they lack capacity to make relevant decisions.

“You need to understand how they got to that position and what they would have done prior to lacking capacity. Has this only come about because they’ve lost capacity? That’s a very different thing to if they’ve always lived like this.”

The line where you have the problem, he feels, is in cases where the person has capacity to make relevant decisions, chooses to continue living in a certain way and is unwilling to engage.

“Then that’s human rights, isn’t it? I think part of the problem is everyone just thinks ‘refer it to social work and they can do some of that Mental Capacity Act stuff’. There is a perception that you must lack capacity if you are living like that, and that’s just not true.

“You have to accept that there are certain people who have capacity and will decide not to engage. However unpalatable that is to the community and society as a whole, it’s a reality.”

‘Two different scenarios’

FitzGerald says social workers would’ve been helped in this regard if there had been greater debate over how self-neglect should be included as a safeguarding issue under the Care Act.

“There are two parts to self-neglect and I think this is what causes the difficulty and anxiety.

“The first scenario involves a person who is self-neglecting not through a life choice, but through their circumstances. An older person may have lost their partner, for example, and is starting to deteriorate. Or a person may not have enough money to care for themselves.

“This would clearly be a scenario that would benefit from intervention from adult protection.”

The second scenario involves the “life choice” and that is a human rights issue, he adds.

“I think what we’re struggling with here is less the issue of self-neglect and more how far does the choice and control debate take you – where is the balance?

“I would not have put self-neglect under adult protection – or if I did, I would have narrowly defined it to that first scenario, where it’s a result of those outside factors.”

‘Thorough capacity assessment’

The issue is further complicated where there are concerns about the impact of the adult’s self-neglect on other people, where it is considered to be anti-social behaviour or where it puts a person’s tenancy at risk. All three of these issues were present in Robert Crane’s case.

The serious case review concluded that agencies had underplayed the risks Mr C’s behaviour posed to others and this meant that decisions were made predominately on the basis of his willingness to comply, or assumptions about his capacity to choose how he lived.

“Mr C’s circumstances were seen as lifestyle choice, but insufficient attention was paid to the threat his behaviours posed to others, particularly in relation to the accumulation of rubbish in his flat and his propensity to start fires. This behaviour, together with his diagnosis of bipolar disorder, should have led to a thorough assessment of his mental capacity,” the report said.

It added that staff needed to be able to challenge and work assertively with the level of self-neglect being shown by Robert, in the context of his history of mental health problems.

Harvey says that if the risk is so significant it poses a wider risk – and “we can’t just say well that’s a choice” – then you should involve the person in any decision-making that might result in more instructive intervention. “The classic one everyone talks about is fire risks,” he says.

“Social workers aren’t the ones to deal with that really, it’s got to be a collaborative approach with the individual, the fire service, maybe the housing department if they’re involved…

“The social worker I think is the key in allowing those relationships between everyone concerned to hopefully get a resolution, rather than just stepping in.”

‘The jury’s out’

For Harvey, the jury is still out on whether the Care Act changes will have the desired effect.

“My view is that I don’t actually see what value bringing self-neglect into the safeguarding framework gives it. An investigatory meeting is going to give you nothing. You’re just going to ask the social worker to do some good social work, which they would have done originally.

“But I don’t think we should just drop it – let’s evaluate it and see if it does bring value to people’s lives by having it within those safeguarding arrangements.”

Source: Community Care