Trust is the key

When a 57-year-old man began to
suffer from a chronic physical illness he spurned help. Then Rufus Beer
(pictured left) set about winning his trust and helped him to develop more
control over his life, writes Graham Hopkins.

Case notes

Practitioner: Rufus Beer

Field: Social worker, independent
living assessment team for disabled adults and adults with chronic sickness.

Location: Cheshire

Client: Tom Shadwell (not his real
name) is a 57-year-old white male previously in full-time employment and
unknown to the social services department. Last year he contracted a
debilitating illness, which resembles motor neurone disease.

Case history: Tom Shadwell’s life
changed dramatically when he contracted his illness. He attempted to live on
his savings – refusing help and benefits. During the winter his condition
worsened, not aided by the lack of central heating in his house or its
inappropriate design. He agreed to try residential care. However, after about a
month he requested to move back to his house. The social services department
did not think this was a good idea without full, comprehensive support. But
Shadwell would only agree to the most minimal support and the
department was unable to prevent him from moving home.

Dilemma: The department was willing
for Shadwell to make his own decision but was very concerned that he was
refusing all but very minimal support.

Risk factor: By moving back into his
own home which was not adapted to his increasing physical needs, and by refusing
full support, there was a danger that Shadwell might cause himself
serious harm.

Outcome: Shadwell still lives at
home and is gradually agreeing to increased support.           

Over the past 10 years or so the rights of service users have been promoted, as
never before.

Whereas in the past users might have
accepted what social workers thought was best for them, today more are aware
they have a right to make decisions about their care. But what can be done when
clients makes decisions that appear to go against their own interests by refusing
all help and support; decisions which could put them in danger?

This was the reality faced by Rufus
Beer, social worker with the independent living assessment team, when allocated
the case of Tom Shadwell (not his real name), a working man in his 50s and
previously unknown to the department. Shadwell had contracted a debilitating
disease.

He has consistently refused to have
tests, so his condition remains unidentified, but the symptoms – such as
deteriorating mobility, difficulty in swallowing – resemble motor neurone
disease.

Shadwell’s house was not suitable
for his changing needs: his bathroom and bedroom were upstairs and there was no
central heating, says Beer. “We organised for him to go into residential care.
He got on well with the staff and the other people there but he wanted to go
back home. He was also feeling better: he had good food and regular baths. In
short, he felt rejuvenated and felt ready to go home.”

But Shadwell refused support to do
so. “We had to sit down with him and be very honest about our concerns,” says
Beer. “I put to him the risks he was taking. If he has a fall, which he does
regularly, he has no phone or alarm.”

Shadwell’s reclusive life – even his
letterbox is boarded up – also concerned Beer: “But he has the right to make
his own decisions,” he says. “There’s nothing we could do to stop him. People
can and do make decisions that, well, surprise us,” adds Beer. “But they’re
adults and we have to respect those decisions. And what we can do is try to
minimise any related risks.”

Shadwell refused to move house.
“That’s one of the things I really thought he would agree to – after having
agreed to spend time in residential care. But, no,” says Beer. Neither would he
entertain thoughts about adapting his house, refusing even to meet with the
occupational therapist.

However, there have been small
victories. Shadwell has moved his bed downstairs and now uses a commode. Enter
home carers. “He agreed that they should be allowed to empty his commode,” adds
Beer, “and he is now allowing them to do other things. This was something we
hoped would happen.”

Shadwell is clearly a very proud man
– unwilling to give in to his disease and loathe to accept help. For example,
he won’t even apply for benefits to which he is entitled. He also, understandably,
wants to make the decisions.

And it is on Shadwell’s terms that
things change. “The carers now work really well with him,” says Beer, “he feels
supported by them. He trusts them, basically. It’s all about building trust
with him, letting him feel in control. He can make the moves. And it’s then we
take our cue. He asks the carers for help with shopping and we say ‘great!
let’s make it permanent.’ And he believes his carers actually do care about
him. He’s more open to their help. He will say, ‘I didn’t think that anyone
would care about me’. He thinks that they get paid and that’s why they do it.
But he now realises it goes further than that and maybe that’s why he is now
allowing them to do more and more.”

As a result Shadwell’s move home is working
much better than Beer had imagined. “But at the same time,” he says, “I am not
convinced that it might not all go backwards – if something happened, some
major thing.” Such as Shadwell believing that one of his carers had stolen
something?

“Something like that would just
destroy him. A lot of what we are trying to do is built up around his trust of
the carers. He’s just this week agreed to them having a key to his door, which
I think is another big breakthrough.”

Being independent isn’t necessarily
about doing things for yourself. When that can’t happen, it’s about controlling
the things that happen to you. Having someone dress you, but in the order you
want them to: that’s independence. It is with this message that Beer hopes
Shadwell will finally come to terms with his situation.

Arguments for risk

– Shadwell was very strong in his
conviction to return home and such decisions are usually welcomed and supported
by the independent living assessment team. Despite his rejection of a full and
comprehensive support care package, at least Shadwell was communicating with
his social worker, Rufus Beer, and was accepting a degree of support – however
minimal  – so at least his situation
could be closely monitored.

– It was clear that Shadwell was a
proud man who needed to be in control of his own decision-making. He had
agreed, after all, to move into residential care after he had time to consider
the situation. There was a real opportunity that he would request or agree to
additional help and support once he considered it was on his terms.

– Shadwell was an articulate adult
making his choice to return home, and while he was mentally capable of making
such a decision, Beer and his colleagues had no choice but to respect that.

Arguments against risk

– Shadwell could be considered to be
in denial about his illness and had convinced himself that everything would get
back to normal. By choosing not to have his illness diagnosed and attempting to
maintain so much mobility he was in danger of seriously harming himself.

– Shadwell would fall often and yet
refuse to have his house adapted to better suit his needs. Also the lack of
heating in his house and bathing equipment downstairs meant that his physical
health and personal hygiene – beyond his disease could well be compromised.

– His swallowing disorder meant that
he had to have a specialised diet but he would refuse help with shopping or
cooking.

– By refusing benefits and living
off his small and quickly diminishing savings Shadwell was putting himself in
financial jeopardy.

Independent comment

For someone who has, for whatever
reason, chosen a reclusive life, the sudden onset of physical impairment and
consequent necessity to engage with the outside world, is a desperate
challenge, writes Frances Hasler. Tom Shadwell’s insistence on staying in
control is his way of addressing that challenge, and the social worker has
responded sensitively to it. It is right that his choices as an adult are
respected, however much against his own interests other people see them to be.

Shadwell clearly views the welfare
state with suspicion. Other disabled people might say he is right to be
cautious. But disabled people would also tell him that options exist where he
can have support under his control, so that he can continue to stay at home.
Shadwell’s way of ensuring control seems to be to take the help offered in tiny
bits, to assimilate each new bit at his own pace. Over time, he may gain enough
confidence to consider a more holistic approach and hire the people he wants.

Until he is ready to take more help,
the social worker is doing the right thing, offering discreet support at a
level Shadwell can tolerate.

The “risk” in intervening further is
that Shadwell’s autonomy will be taken from him. Stripping someone of their
right to make choices, even bad choices, is dehumanising.

The ideals of the independent living
movement can and should inform the ongoing approach to his needs: his choices,
his solutions.

Frances Hasler is director, National
Centre for Independent Living.