Transcriber: Priya Kalyanakrishnan Reviewer: Zsófia Herczeg
I’d like to kick off this talk about self-neglect
by introducing you to some of the people
who I learned about in the course of this research.
First, let's call him Bruce.
Bruce filled his upper floor flat
with tons of timber, scrap metal, old furniture,
and he neglected his other needs
because of his determination that nothing should go to waste.
So no maintenance was done for years.
Bruce literally moved through tunnels amidst the stuff,
and lived in mortal terror
of being found out by the housing association.
He would freeze if a brown envelope dropped through the letterbox
in case it was from the housing association.
And when, after years of living like this,
he could no longer hide the situation
and thought he was about to be made homeless,
he said it was almost a relief.
Even if he was to be on the street, he wouldn’t have to be afraid anymore.
Let’s call him Kevin.
Living conditions in Kevin’s home had deteriorated enormously.
Social services and environmental health had tried to engage him
with making changes.
But he didn’t want to let others in or change anything about the way he lived.
Eventually, they had to intervene and imposed to clean up.
Kevin felt so violated when this started
that he attacked the social worker with a hammer.
And let’s call him Michael.
Michael was becoming disheveled, increasingly smelly.
He went to the pub twice a week but rarely went out elsewhere.
He wasn’t aggressive, but he was disruptive.
And eventually, ran the risk of being barred from the pub
as he had been from many other pubs in the neighbourhood.
He was getting thinner,
and increasingly his health appeared to be suffering.
He rejected any input from social care outright.
So self-neglect happens
when we don’t, for whatever reason, take care of our own health,
personal care, hygiene or home surroundings.
Probably all of us do it from time-to-time.
However, when it reaches a point where it might be getting out of control,
and puts a person at risk of serious harm,
it can become an issue for social care,
health services, housing support,
the many other support organizations in people’s lives,
and for neighbours, family and others among the public.
It might seem easy to say something must be done
and rush in and just do it,
whether that’s cleaning,
removing the person from the situation, eviction.
Other times we say, well, they’re making their own choices.
We can’t interfere -
even if they seem to be bad choices.
I would argue that very often neither one is the solution.
Instead, we need to get beside the person,
understand where self-neglect comes from,
and then find a path between these two poles
of intervention on the one hand
and noninterference on the other.
So this is the dilemma of self-neglect.
When do we intervene?
When do we not?
People do have human rights to respect for their private lives.
But we might also expect life and health to be protected.
The neighbors, the person on the street might ask for someone to step in.
And often, maybe this should happen.
But quick solutions and magic bullets tend not to work well
as I will go on to explain.
What does work?
Understanding,
inquiring curiosity and persistence.
Now, there’s been a strong move
in safeguarding policy and practice over the last 15 years or so
towards respecting individuals’ autonomy.
People have always felt this is important.
An Englishman’s home is his castle, they say.
People have a right to make unwise decisions,
and for very good reasons.
Stepping in and telling someone
that they can no longer live their life as they would choose for themselves
is a big step and, rightly, a last resort.
But there have been nearly 300 safeguarding reviews
of deaths from self-neglect in the last 12 years,
which shows that the emphasis put on autonomy
has sometimes left people at risk.
The term lifestyle choice is often used to indicate
that the person has freely chosen their situation,
and professionals, therefore, have no right to get involved.
However, when we look at the terror of discovery
Bruce was living with
or Michael’s growing isolation and loss of the pubs he enjoyed,
what does it mean to respect people’s choice in these circumstances?
There is no single story of self-neglect.
And this is why quick solutions,
dismissing deep rooted problems as lifestyle choice
or leaping to intervene too readily often don’t work well.
Take Bruce.
While he couldn’t bear to part with any of what he had stored,
he didn’t want to carry on the way he was either.
Efforts to clear the flat had to go slowly,
carefully, sensitively, and at his pace.
But what really made the difference
was that the social worker engaged with Bruce about his hopes and values:
his pride in his DIY skills,
his desire to make something useful
out of what otherwise would have been waste,
his shame at what it had led to.
It meant that when his flat was cleared.
And in Bruce’s own words,
“20 tonnes of stuff leaves a big hole behind it when it goes.”
That hole could be filled by connecting him
with carpentry classes where others could learn from him.
Taking the time to understand what mattered to Bruce
helped to restore his self-worth.
Michael didn’t want to know about social work
or any other support services.
So his social worker changed tack
and got to know the people in Michael’s community.
He found that the pub owners were actually concerned for Michael.
They wanted to help rather than to exclude him.
But their customers were leaving because of him.
And they’d found that Michael himself
absolutely hated the idea of receiving what he saw as charity.
In the end, the social worker was able to broker a solution
where Michael paid the pub owners to do his laundry,
and for a cooked meal once a week,
and he integrated better into the pub.
Recognizing and affirming Michael’s need to feel independent
unblocked the problem and brought him back into the community.
What we see in Bruce’s and Michael’s stories
is a shift from solving the problem to showing concerned curiosity for them.
Not seeing their lives as a problem to be fixed
but coming from a place of genuine concern and interest
and wanting to know what matters to them,
it was recognising the strengths they had:
Bruce's concern to make good use of the materials he found
and share his skills,
Michael’s pride in his independence,
and working with those
rather than framing their situation simply as a problem.
So when we read about cases of self-neglect,
often we ask,
“How can this be allowed to happen?”
Or when we come across them in real life,
much of the time we might put it down to the person’s own choice.
Often, however, there's a complicated story behind the way the person is living,
and only by understanding it
and understanding the complex emotions contributing to the self-neglect
can we find a satisfactory resolution.
It's easy to call for social workers, the GP, environmental health,
somebody to step in and put a stop to a neighbour living like this.
Alternatively, it can be easy to assume
that the person is making their own decisions,
and for practitioners or others to argue
that they’ve already discharged their responsibility
and need to respect the person’s own choice.
It takes time and effort
to look beyond the biases and assumptions we bring to these cases
and get alongside someone living in extremely difficult conditions.
But suspending judgment about living conditions,
smells, clutter, appearance,
poor self-care and the like
until we understand the stories and the values behind them
is something we can all do.
And it often leads to solutions that may not be quick
but are more lasting.
We can see from the stories I’ve talked about
what can be possible
when an approach of compassionate curiosity is taken.
We saw how understanding, patience and persistence
helped Bruce and Michael find solutions that worked for them
rather than being imposed on them.
And Kevin?
He’s still angry about what happened to him,
but he understands why,
and now provides training for the local authority
based on his experiences
that he could go from assaulting the social worker
to working with social workers to make things better for them
and for other people in dealing with situations of self-neglect,
I think is testament
to what this approach of engaging with concerned curiosity
can really deliver for people in self-neglect.