A precarious package

Meeting the care needs of disabled people in their homes entails
more risk than providing for them in a specialist unit. Mike George
talks to Cindy Searchfield about a client whose wife wanted him to
stay at home but who required an intensive care package that proved
very difficult to organise.

By their very nature many intensive packages of care can be
difficult to put in place and maintain, yet society expects social
care agencies and staff to do whatever is necessary to give people
the option of living independently.

The difficulties encountered by staff in meeting complex needs
are often compounded by financial or practical resource
constraints, but even so we do not perhaps admit in public just how
precarious some care arrangements really are.

Like most authorities, Brighton and Hove, where Cindy
Searchfield works as a resource officer in a physical disability
assessment team, has restricted resources available to meet
clients’ intensive support needs, and this has undoubtedly added to
her already difficult task in supporting Kamal Begum (not his real
name).

Over the last few years Begum has become increasingly disabled.
Despite numerous hospital investigations the causes have never been
diagnosed and consequently no curative treatment has been
available. Until a year ago his wife had been able to care for him
but his condition then rapidly worsened and the district nursing
team referred him to Searchfield’s team.

One of her colleagues carried out an assessment and he was
placed in the authority’s highest category of need. Almost
immediately afterwards his condition deteriorated, he lost his
remaining mobility, and became unable to swallow. Consequently he
was referred to hospital to have an artificial feeding tube fitted.
The hospital social worker then began to put together an intensive
emergency package of care with two carers attending twice each day,
although before this was properly in place his wife discharged him,
against medical advice. Searchfield explains that Mrs Begum
insisted that it was her task to care for her husband, and she felt
that his proper place was at home.

Two care assistants were obtained for twice-daily visits, from
both in-house and agency services. By this time Begum was becoming
incontinent; he had no effective mobility and was unable to
communicate, although he was able to hear. In addition, he was
physically resisting the carers, although, says Searchfield, it was
not clear whether this was because he felt unsafe or did not wish
to be handled. The resistance might even have been an involuntary
action. “We found it very difficult all round to know what his
wishes really were,” she says. As a result, before each morning and
evening visit by the carers his wife was asked to give him a muscle
relaxant. She also continued to feed him.

The care assistants’ task was made more difficult because Begum
was a large man, and had been placed in a small bedroom. Mrs Begum
insisted that their three sons, all of whom were in further or
higher education, needed the larger bedrooms for study purposes.
Also, the design of his bed made lifting and handling more
problematic. Consequently, Searchfield’s manager arranged for an
independent risk assessment by a lifting and handling expert
assessor.

The assessor made several recommendations. These included the
use of an electric hoist, a suitable bed, and removing furniture
from the bedroom so that he could be safely transferred into a
wheelchair and taken to another room during the day. Because he was
so resistant to being moved the assessor also insisted that a third
care assistant had to be employed, who could carry out personal
care while the other two held him. There were also several detailed
recommendations on methods of lifting and handling.

Searchfield says:”After some effort I managed to increase the
number of carers, and with occupational therapists and other
colleagues we managed to locate a suitable bed, install an electric
hoist, and get the wife’s agreement to move furniture out of the
room. So we met all of the independent assessor’s
requirements.”

However, she adds, there were other difficulties caused by the
family’s attitude towards his incontinence. Neither Mrs Begum nor
her sons wanted incontinence supplies around the house, and
insisted that the care assistants take the heavy commode out to the
bottom of the garden before emptying it. This was a significant
risk in itself.

“But the most difficult challenge I faced was having to explain
to her that while we obviously respected her wishes, there was
always a possibility that this intensive care package might prove
difficult to maintain. For example, if one or two assistants went
off sick the package would no longer be viable. I said that I was
also very concerned about her health, she already had a back
problem and this was getting worse. I was very aware of the
enormous strain that the situation put on her.”

However, Mrs Begum did not respond, and instead accused
Searchfield and her colleagues of not treating them fairly,
although it had been explained to her that no other client was
receiving this amount of support. Nor would she accept a proposal
to temporarily place her husband in residential or nursing home
care in order to give her a break. She also refused to consider a
longer term placement for her husband.

Searchfield says:”This situation is very stressful for us all. I
really worry about the longer term viability of this package, and
of her ability to keep going.

“For example she called a short time ago because her husband had
slumped over in his wheelchair and I had to suggest that she asked
ambulance staff to help, for I had no suitable resources available.
On the other hand I’m also very aware that there are no culturally
suitable residential placements available for him.”

Case notes

• Social worker: Cindy Searchfield
• Field: Resource officer in a physical disability assessment
  team
• Location: Brighton and Hove social care and health
• Client: Kamal Begum (not his real name) is in his 50s, and has
  a serious but undiagnosed neurological and physical condition. He
  lives at home with his wife, and three teenage sons who are in
  further and higher education. His condition has deteriorated
  rapidly, particularly over the past year.
• Case history: Until a year ago it appeared that his wife was
  able to provide most of the care, but his condition worsened
  rapidly and a full needs assessment was carried out, which
  determined that he needed an intensive package of care. He had by
  then had an artificial feeding device fitted, which enabled his
  wife to feed him, she also provided medication to reduce his
  physical resistance towards being moved, but all transfers and
  other personal care were carried out by the assistants.

• Dilemma: He is now unable to communicate his wishes, so despite
  his low quality of life and the substantial risks to all concerned
  Searchfield has to accept the wishes of his family that he remain
  at home.
• Risk factor: If any of the carers are sick the package ceases
  to be effective and the risks to Begum would increase.
• Outcome: He continues to be cared for at home.

Arguments for risk

• The family, and especially the wife, have expressed a clear
  wish to have Begum cared for at home; she maintains a strong belief
  that this is her duty.
• Mrs Begum maintains that despite her husband’s communication
  difficulties he too wishes to remain at home.
• Mrs Begum says that hospitals stays were upsetting for her
  husband.
• An assessment of the risks to Mr Begum and to the care
  assistants has been carried out, and all of the recommendations
  have been implemented.
• Begum is also visited twice a week by a district nursing team,
  and Searchfield is in close contact with other professionals, so
  the situation is monitored closely.
• There are limited residential or nursing home resources in the
  area which would meet the needs of a younger disabled man.
• So far, and despite the difficulties, the care package has
  ensured that he receives a reasonable level of personal care.

Arguments against risk

• If care assistants go off sick the care package will fall apart
  immediately. The same would happen if the agency decided that the
  risks to its staff were too high.
• It is almost inevitable that some problems will arise which
  can’t be met however hard Searchfield tries, and these could
  immediately put Begum or his wife at risk.
• Mrs Begum does not appear to receive any assistance from the
  sons, nor from any wider family.
• Begum’s quality of life is extremely low.
• His physical condition is likely to continue to worsen.
• Similarly, Mrs Begum’s back problems are worsening, and she is
  under increasing stress.
• His physical safety and well being would be improved in a
  placement where there was 24-hour nursing care.

Independent comment

Cindy Searchfield has encountered a situation which, to a
greater or lesser degree, is replicated throughout the UK in all
care sectors, writes Gaby Champion

Complex packages of care challenge the care manager and agencies
appointed to deliver care. The care package is coming to the point
where it presents an increased risk to all concerned, despite the
improvements made in the home environment.

In this case, Kamal Begum’s condition has rapidly deteriorated,
with Mrs Begum insisting that he remain at home. This has led to a
dilemma for both the local authority and the care agencies. Both
are desperately trying to accommodate the family’s wishes while
weighing up the risks to the service user, family carers and the
care workers engaged to deliver the care.

The issues here appear to be relating to health and safety
risks, namely moving and handling, and infection control.

It is reassuring to note that regular assessments have been
undertaken to ascertain the moving and handling risks to the
service user, informal carers and the care workers. All
recommendations were implemented, which have reduced the risk to
everyone concerned.

There appears to be a risk of infection, due to Mrs Begum’s
insistence that incontinence supplies are not kept around the house
and the commode is taken to the bottom of the garden.

Rightly, the family’s wishes have been taken into account, but
their requests are putting the service user and the care workers at
an increased health and safety risk.

Inter-agency co-operation is very strong here and this should be
copied throughout the UK.

This case is one which requires tact, diplomacy and negotiation
and this particular local authority is doing its utmost to meet the
needs of the service user, his family and the care workers.

It could be used as an example of good practice throughout the
UK.

Gaby Champion is general manager, Nestor Training
Services.