Gambling on independence

A former social care manager is diagnosed with
a disease that affects people with HIV and which severely impairs
his cognitive ability. He develops mental health problems and is
sectioned. A return to independence seems far off until social
worker Paul Hatchman intervened. Graham Hopkins reports.

No longer considered newsworthy, you might be
forgiven for thinking that HIV was no longer with us. But by the
end of 2001 some 48,226 people in the UK had been diagnosed HIV
positive, of which 3,342 were newly diagnosed that year. Since the
introduction of combination therapy in 1996, death rates have
dropped dramatically. More people (currently estimated at 33,000)
are finding themselves able to live with HIV.

Life, however, was not something that Richard
Fraser (not his real name)was thought to have much of left.
Encouraged by his friends, who were alarmed at the deterioration of
his health, he went to hospital and was subsequently diagnosed with
HIV. Worse followed: he was also diagnosed with progressive
multifocal leukoencephalopathy, a terminal and incurable illness
that affects the nervous system.

PML usually takes between one and four months
to claim its victims. It is very rare to survive this disease, but
somehow Fraser did so. He was eventually discharged home, but with
an intensive 24-hour care package.

Fraser, now 46, also developed mental health
problems that resulted in him being sectioned twice. It was at this
point that Paul Hatchman, social worker with the health (specialist
HIV) team, became involved.

He immediately set about sorting out “the nuts
and bolts stuff”, such as Fraser’s housing benefit, disabled living
allowance and professional pensions. It was clear that Fraser, an
ex-social care manager, was in denial over his illness – possibly
stemming from the shock of the dual diagnosis. “He had come to
terms with the HIV but not the PML. He wanted to go back to work.
But I explained that wasn’t realistic and he’d get angry and
agitated. The pointers were all there, towards him getting violent
and being sectioned again,” says Hatchman.

Hatchman supported Fraser through this
traumatic period. “I tried to understand where he was coming from,”
he says. He was increasingly isolated, his circle of friends having
faded away. “We tried to address his aggression and convince him
that we only wanted what was best for him. But he went through a
stage when he wouldn’t return calls or left rude messages.”

The other big challenge for Fraser was the
loss of privacy that inevitably accompanies 24-hour care. “There’s
only so much a carer can do and they’d sit with him and he’d just
feel watched,” Hatchman says. He had four carers (all trainee
doctors) who worked a rota. On occasion one would fail to turn up.
What could have been a problem actually became an opportunity, as
Fraser would manage to cope without a carer. “After this had
happened a few times we started to think about reducing the care
hours,” says Hatchman. “We agreed to take away the night care and
that worked out fine.”

Further opportunities presented themselves:
“He’d call up and say that the carer hadn’t turned up and he needed
to go to the bank. So I’d say ‘well, just go then’. And he would.
So, slowly but surely he took on more independence.”

There have been times when Hatchman has
“sailed close to the wind” in his work with Fraser. Occasionally
Fraser hasn’t taken his anti-psychotic medication. “He had worked
in the drugs field and knows what these drugs can do to your head,
so he wouldn’t take them. But he’d become aggressive.” His carers
had informally monitored his medication, but with their reduced
hours this was no longer possible.

However, Fraser has managed his medication
well. The community psychiatric nurse visits fortnightly now rather
than daily. He even attends courses at the London Lighthouse,
studying for a teaching qualification. Although he is aware that he
may never teach, the personal esteem and confidence this promotes
is immeasurable.

Fraser’s continual improvement, mentally and
physically, has meant that he now has just two care hours in the
morning and three in the evening. And this may even be reduced
further. Hatchman says that Fraser recently facilitated a group at
the Lighthouse on HIV and drugs awareness: “I went along and there
were about five other professionals there as well. And apart from
me, no one knew about his status. I was very impressed and the
feedback was very positive.”

Hatchman’s work with Fraser highlights the
positive support that can help bring some normality back to a life
shattered by HIV and, most impressively, PML. “I compare him now
with those times when he has been very low, depressed, confused and
disorientated. And he is such a different man.” And quite a
remarkable one, too.

– If you have a case that you think would suit
The Risk Factor please contact Graham Hopkins on 020 8652 3106 or

Case notes

Practitioner: Paul Hatchman

Field: Social worker, health team (specialist

Location: London

Client: Richard Fraser (not his real name)

Case history: Just over two years ago,
Fraser’s health was deteriorating so badly that he was persuaded by
friends to go to hospital. He was subsequently admitted and tests
showed that he was HIV positive. Further tests showed that he had
suspected progressive multifocal leukoencephalopathy (see Fact
File, page 43), a disease associated with HIV that severely impairs
cognitive ability. For example, Fraser became unable to wash
himself, dress himself and so on. Survival is very rare, with death
occurring usually between one and four months after contracting
PML. He spent three months in an HIV specialist ward at a general
hospital and was then admitted to a north London respite hospice.
He was discharged home with an intensive 24-hour care package, but
within a month began to display mental health difficulties that
resulted in him being sectioned. He returned home only to be
sectioned once again.

Dilemma: Fraser, an ex-social care manager,
had difficulties in coming to terms with his illnesses, believing
he could return to his usual way of life.

Risk factor: By increasing Fraser’s
independence, there is a danger that he might not manage his
medication resulting in him being sectioned again.

Outcome: Fraser continues to improve and it is
possible that future assessments might reduce his level of care

Arguments for risk

– Fraser’s physical health was improving and
it was reasonable to build on this and encourage more independence.
The more that he was able to do things for himself the more his
confidence and self-esteem would improve, thereby positively
affecting his mental health.

– Clearly the more independent Fraser is, the
better his quality of life. By moving, however gradually, to
developing his independence, it would go some way to combating the
trauma of the double diagnosis of HIV and PML and restore some
normality back to his life.

– The isolation suffered through his condition
and loss of work and friends needed to be tackled, or else there
would be a real danger that Fraser might deteriorate further.
Attempts to introduce social contacts may help to reduce Fraser’s
helplessness and, in turn, his frustration and aggression.

– Fraser had demonstrated that on occasion he
could manage with reduced care, and he was willing to try and do
more for himself.

Arguments against risk

– Fraser had not always managed his medication
well – either forgetting or deliberately refusing to take it (on
one occasion his carers found a small number of tablets tucked away
in his pockets). The removal of full-time care meant that the
informal monitoring of his medication by his carers would be lost –
adding to the risk.

– Should he not take his anti-psychotic
medication, his subsequent aggressive behaviour may be
misinterpreted, resulting in him being possibly sectioned.

– Should he not take his HIV medication there
would be a strong possibility that he would build up a resistance
to it. This may lead to the further possibility that he may run out
of effective medicines to stabilise his health. The side-effects
can also be quite harmful.

– There is always the possibility that if
things were not working out and he believed he would never have his
old life back, he might at best deteriorate further, or worse take
his own life.

Independent comment

Fraser faced the complexity of an HIV positive
diagnosis and possible deteriorating cognitive impairment at a time
when his physical health was severely affected, writes Grainne
Morby. Any diagnosis of a potentially life threatening condition,
particularly HIV with its associated stigma, has a damaging effect
on self-esteem.

Fraser was provided 24-hour medical care
package by four different people, which also helped combat
perceived risks such as self-harm and non-adherence to treatments.
He, however, believed it was over-controlling and did not welcome

Breakdowns in the care package led to an
increased emphasis on supporting Fraser’s independence which, with
the peer support and personal development opportunities, suggests
that he is learning to live independently with HIV. It is very
likely though that, without Paul’s encouragement and practical
support on diagnosis, the positive outcome would have been less

A person is better equipped to deal with the
consequences both of their HIV diagnosis and the knock-on effect it
will have on the rest of their life if health and social care are
combined early enough after diagnoses of HIV.

Terrence Higgins Trust and Lighthouse are in
the process of establishing a social care centre. This will enable
people living with HIV to receive both medical and social care
support, and reflects the growing need for a more holistic approach
to the delivery of care packages.

Grainne Morby is director of London
services at the Terrence Higgins Trust.

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