A damaging directive

Practice panel – Kingston-upon-Thames health
and disabilities team.

This week’s panel considers a case where a
disabled person is forced to use a hoist which worsens his quality
of life.

Panel responses

James Lampert
Marcus Woolley has been issued with a hoist and feels that he was
not involved in the original decision and that he is being forced
to use a piece of equipment that he does not want.

A reassessment under the NHS and Community
Care Act 1990 should be made since there is a true conflict of
interest. In assessing the need for handling equipment in the
client’s own home, the Manual Handling Operations Regulations 1992
must be complied with and a manual handling risk assessment should
be completed with great care. A back care adviser could contribute.
A balance must be found where one party’s benefit does not
significantly increase the other party’s risk.

Woolley has a right to make choices and
decisions about his own health and independence, and these should
be respected even when they conflict with professional opinion,
which can cause ethical dilemmas for therapists.

Mandelstam¹ suggests that local
authorities need to be clear about roles and responsibilities under
the Community Care (Direct Payments) Act 1996 if they are not to
find themselves potentially liable legally for mishaps involving
the client and service provider.

Woolley’s GP or district nurse should be
advised of his skin damage. An assessment of his skin condition
could give more clues about the possible cause of the damage. The
sling might need to be changed to incorporate better support,
padding or a style that he could sit on all day. A poor manual
handling technique could also cause damage. Other agencies might
need to be involved – for example, district nurses for pressure
care or the wheelchair service for a pressure cushion.

Woolley will either accept or reject the idea
of using a hoist. He might accept an alternative – for example, an
electric overhead hoist is quicker and easier to use and probably
more comfortable than a mobile hoist. Following risk assessment, it
might be decided that a single carer is sufficient.

He may still decide that he does not want to
use the hoist, so the local authority should make sure he is aware
of all the implications of his decision, including legal
responsibilities and the way in which care can continue to be
provided.

Ruth Sadler
Woolley is receiving support under the direct payments
scheme, whereby service users manage their own care package and
receive payments to employ personal assistants. This service
assists people to maintain independence and autonomy over their
lives.

A complete reassessment of Woolley’s needs is
required. In particular, a joint care management and occupational
therapist assessment to review his care package and look at the
issues involved with appropriate equipment, his skin damage, manual
handling techniques, and joint risk assessments.

From a care manager’s perspective, looking at
all of Woolley’s needs as a person and making sure he contributes
fully is essential. Involving users in the assessment and
decision-making process is very important. This takes into account
his rights, and promotes dignity and independence, as well as his
particular requirements and choices. It is sometimes difficult for
people to come to terms with their disability and changing needs,
as well as the huge amount of information that they are expected to
give and receive.

The care management reassessment needs to
review the entire package of care that Woolley is receiving,
including the number of carers required, time management and
whether the current package is adequate for his needs. An outcome
may be that he needs an increase in his care package to two carers.
This may reduce the amount of time spent to achieve specific
tasks.

As the employer in this case, it is Woolley’s
responsibility to train his assistants adequately. Some councils
provide in-house manual handling training courses, which assistants
can attend. There may also be support groups for other disabled
people in similar situations.

Although the case scenario states that Woolley
recently “acquired” a hoist, I wonder whether he believed initially
that the equipment would be helpful, not realising the impact this
would have upon him and his lifestyle. Some people may feel that
the use of equipment can be disempowering and degrading. This can
be a source of conflict. Time needs to be spent with Woolley to
explore his feelings when using equipment and the way in which it
can be viewed in a more positive way, to promote his
independence.

¹ M Mandelstam, “Safe Use
of Disability Equipment and Manual Handling: Legal Aspects – Part
2, Manual Handling”, British Journal of Occupational
Therapy, 64(2), 73-80, 2001

User view

Since I acquired a physical disability, I have
become more self-centred. This is not necessarily a bad thing. My
health is much more fragile than an able-bodied person’s. If I feel
that my health is being put at risk, or that moving and handling is
painful, I have the right to demand that less painful and less
dangerous methods are used. I think I know how Marcus feels –
sometimes my “risk assessments” have ignored the fact that they
increased the risks to me, the most vulnerable person in the
equation!

However, I feeI I must also take some
responsibility for the safety of the people who help me. Carers and
assistants have a right to work under safe conditions, using the
correct equipment.

Anyone with a physical disability will
recognise Marcus’s concerns about having to spend longer preparing
for the day. I have similar levels of disability, and it can take
me up to two hours each morning. I also need two helpers at various
stages in this process. Marcus needs to accept this fact, and one
hopes he can negotiate with his employer about accommodating this
change.

Nevertheless, it is clear that his moving and
handling regime needs immediate reassessment. Experienced
occupational therapists and physiotherapists should be able to work
out methods of transferring that are safer for both the client and
his helpers. Marcus and his care managers need to appreciate that
this isn’t an exact science – it may take a few sessions to get it
right.

Over the past 20 years, disability legislation
has been aimed at providing a level playing field, in terms of
access to facilities and to work. However, when people are trying
to move away from dependency on benefits, one of the barriers is
the means testing of care provision. Many of us are effectively
prevented from working by the fact that we would be working just to
pay for our own care. Sometimes, in doing this, we are actually
worse off than if we relied solely on benefits. The amounts on
offer from the disability working allowance don’t make adequate
compensation for anyone who loses income support and all of the
benefits it is a gateway to. Marcus can be justifiably annoyed that
he is going to be out of pocket because his care arrangements have
had to be reorganised.

Payments for personal care and their
relationship with paid employment have needed reviewing for some
time.

Simon Heng is chairperson of
Worcestershire Association of Service Users and is a wheelchair
user.