Rights and wrongs

An older couple with deteriorating physical and mental health
and poor command of English provided social worker Alison Kilbride
with the tough task of co-ordinating different agencies to ensure
the couple’s health and well being while respecting their human
rights. Mike George reports.

The government’s social care agenda with its emphasis on
evidence-based practice and effective outcomes seems to have been
broadly welcomed, despite continuing concerns about the future role
of social services. But of course social workers are often faced
with the difficult job of trying to sort what an effective outcome
is. In many situations this is far from clear.

Alison Kilbride, a senior mental health practitioner in a
specialist team for older people, is still grappling with this
question in her work with Mr and Mrs Navard (not their real name).
The couple, who are now in their 80s, suffered political
persecution in the Ukraine prior to and during the Second World
War, and came here as refugees many years ago. They were not known
to statutory services until Mrs Navard had a stroke and was treated
in hospital. At that time it became clear that she was malnourished
and showed other signs of self-neglect, and two days later when
their GP visited the husband, he admitted that he was becoming
confused.

They were referred to the hospital social work department, and
subsequently agreed to enter a rehabilitation unit, where she
received intensive physiotherapy and where an occupational therapy
assessment was made. It was noticed that the couple became hostile
when separated.

The hospital social work department decided to refer the couple
to Kilbride.

She says that it was clear to everyone that Mr Navard had
progressive dementia, and that as a result of this and his wife’s
condition, they were at significant risk. Consequently, a
substantial care package was put in place, and Kilbride and her
colleagues arranged a psychiatric assessment for the Navards. The
assessment confirmed that they were suffering from progressive
dementia. Meanwhile, their home had been thoroughly cleaned, and
adaptations made to assist Mrs Navard, who had significant physical
impairments.

The couple had expressed a wish to remain in their own home, and
at first the care package, which included many personal care
services for Mrs Navard, appeared to be working. But then her
husband started to exhibit paranoid symptoms. He began to make it
difficult for the care assistants to attend to his wife, and at
times refused entry to them, to Kilbride and to the community
psychiatric nurse, all of whom had been visiting very regularly.
Also, at about this time he began to be unable to understand or
speak English, and she subsequently arranged for Ukrainian
interpreters to visit alongside the care staff in an effort to
persuade him to allow them to attend to her. Kilbride had offered
the couple the option of residential care, but this had been
rejected. Malnourishment was now becoming a major concern.

Meanwhile, the state of their home was deteriorating to such an
extent that rats were often seen, and on more than one occasion the
Navards’ deteriorating cognitive functioning caused safety
problems, for example the microwave oven had burst into flames.

Consequently, a case conference was called, and a decision was
made to intensify the care package, basically to ensure that one
carer could distract Mr Navard while the other attended to his
wife. Additional attention was given to ways in which the daily
visitors, namely Kilbride, the community practice nurse and the
care assistants, could act to ameliorate his “very excitable”
state. She had also engaged an assertive outreach team from the
local NHS department of old age and psychiatry to help.

Shortly after this, and despite these efforts, Kilbride and her
colleagues were assaulted by one or other of the couple, as a
result of which the care agency withdrew their staff. “This
happened to me despite the presence of a Ukrainian-speaking
interpreter, because by now Mr Navard was unable to recognise me.
Thankfully, my manager and others in the authority supported me a
great deal after the assault, but we had obviously reached another
crisis,” she says. Consequently, the couple did not have the
support of care assistants for a few weeks. In the meantime,
Kilbride had contacted the GP, who the couple still trusted, in the
hope that he would arrange another psychiatric assessment, she also
asked the same of the assertive outreach service.

“By this time the various agencies had already decided that
compulsory admission under the Mental Health Act 1983 was
inappropriate, even though it was clear that their health was
deteriorating and the risks to their safety were increasing,” she
says.

The GP persuaded the Navards to enter a community hospital so
that their physical health could be attended to, but while they
were there their behaviour deteriorated rapidly and a decision was
made to transfer them to a psychiatric assessment centre. The
centre has now decided that they should be discharged back to their
home.

“I’m now faced with them returning home, with only a minimal
amount of care assistance, which I’ve managed to secure from
another care agency. There are enormous health and safety risks,
which are also recognised by the community practice nurse and the
psychiatrist, but there are no legal means to avoid this situation.
I am investigating the use of an electronic keypad on their front
door, so that access can be assured, although I’m concerned about
the human rights implications of taking this step. I’m keeping all
the agencies informed about what’s happening, and exploring
residential and nursing home options,” she says.

“I’m terribly concerned about both of them, and particularly
about Mrs Navard’s health and her very low quality of life,”
Kilbride concludes.

Case notes

Social worker: Alison Kilbride

Field: Senior practitioner in a mental health specialist team
for older people Location: Oxfordshire social services

Client: Jak Navard (not his real name) is in his 80s and has
progressive dementia. He lives with his wife, who has had a stroke,
which resulted in physical and cognitive deterioration. Both were
anti-fascist activists in eastern Europe during the war, and have
English as a second language.

Case history: They were referred to the team when Mrs Navard was
in hospital because of a stroke. A few days later her husband’s
mental confusion became evident to professionals. She was then sent
to a rehabilitation unit for intensive physiotherapist and
occupational therapist inputs. Mr Navard joined her because both
became hostile when separated. She was discharged with a
substantial community care package, and Kilbride’s team arranged
for a psychiatric assessment of Mr Navard, which confirmed
progressive dementia. He began to exhibit paranoid behaviour
towards care assistants and Kilbride, often refusing them access to
his wife. They also stopped speaking and understanding English, as
a result of which Ukranian interpreters were employed.

Then Kilbride and her colleagues were assaulted, which led to
the care assistants being withdrawn. A subsequent psychiatric
assessment confirmed the earlier diagnosis, changes were made in
work practices to protect staff, and a mental health assertive
outreach team employed to assist. They were admitted to a community
hospital, and subsequently referred to a psychiatric assessment
centre – the department of psychiatry and old age at a local mental
health trust.

Dilemma: Their health and cognitive functioning is
deteriorating, but they want to return home, and their wishes must
be respected.

Risk factor: Even with an intensive care package, their health
and safety is at risk.

Outcome: The centre wishes to discharge them back home.

Arguments for risk

– Mr and Mrs Navard have always stated that they wish to remain
together in their own home.

– Suitable residential or nursing home care facilities are hard
to identify, given the couple’s loss of English, and his paranoid
behaviour.

– A co-ordinated approach by care staff, members of the
assertive outreach service, and their GP, could help to secure and
operate a new care package.

– It may be possible under Mental Health Act 1983 provisions to
put Mr Navard on a medication regime, which would ameliorate his
paranoid behaviour, although the department of psychiatry and old
age would need to be in full agreement.

– Social services, with the Navards’ agreement, administers
their finances.

Arguments against risk

– Mrs Navard’s health is at serious risk unless she receives
regular assistance in washing, feeding and other personal care.

– Both of them are living in squalid conditions, and their
behaviour creates serious risks to their personal safety.

– The state of their home is beginning to impact on neighbours,
and there is a likelihood that the environmental health service
will be called in, which would undoubtedly create further
distress.

– Their increasingly aggressive behaviour could lead to care
staff being injured.

– They are socially isolated, and now unable to use English,
which effectively precludes the option of organising any wider
support, befriending or other care network to underpin statutory
services.

– Their progressive dementia, allied to their personal
histories, make it ever more likely that they will view the
intrusion into their lives of care services as a threat.

Independent comment

The challenges here are enormous. Kilbride has done an admirable
job in trying to maintain an isolated older couple in the community
who have both physical and mental difficulties and specific
cultural needs, write Alisoun Milne and Jayne
Lingard. The key risks are around the safety of Mr and Mrs
Navard and also the safety of the care staff. Despite the best
efforts of Kilbride, the couple remain very vulnerable and have
retreated into a world that isolates them from help and
support.

Although use of the Mental Health Act 1983 has been considered,
a formal risk assessment that takes account of Mr Navard’s dementia
has not been conducted. This may help decision making by locating
risk in a coherent framework that respects user rights and applies
the principles of person-centred care. A jointly administered risk
assessment, which takes account of the needs of both Mr and Mrs
Navard, may be helpful.

Although an interpreter has been employed, we do not know if
this person has any understanding of the nature of dementia. An
advocate trained in communicating with people with dementia may
help the Navards to make informed decisions about their future
care.

The Navards and Kilbride have been failed by the separate
delivery of health and social care services, and the even wider gap
between the care of people’s physical health and their mental
health. The couple were assessed in a number of settings and by a
range of social and health care teams. Neither the Audit
Commission’s report on mental health services for older people with
mental health needs¹ nor standard seven
of the National Service Framework for Older People²
directly confront the current pattern of
services failing to meet the needs of the whole person.

¹ Audit Commission, Forget-Me-Not: Mental
Health Services for Older People, Audit Commission,
2000

² DoH, National Service Framework for Older
People, March 2001

Alisoun Milne and Jayne Lingard are
consultants to the Mental Health Foundation’s programme of work on
Mental Health in Later Life and are both qualified social
workers.