When care is withdrawn

CASE STUDY:  The name of the service user has
been changed

SITUATION: William Nicholson, 47, is paralysed
from the neck down. He spent the first 30 years of his life in
“special” children’s homes and then residential care for disabled
people. He moved in with his future wife, Lorraine, also physically
disabled and whom he met while she had respite care at the same
care home. For the past five years they have lived together in
their own home that has been “kitted out with cutting edge,
state-of-the-art gear”. A carer calls twice a day to help out.

PROBLEM: Two months ago, out of the blue,
Lorraine suffered a heart attack and died instantly. Emotionally
and practically this turned William’s life upside down. He had been
largely dependent on Lorraine who, despite her own disability, was
able to assist the carer with lifting and moving him – he is 23
stone. The social services department is not convinced in the long
term that without Lorraine he is able to sustain his life in the
community. An immediate problem has arisen over his moving and
handling. The department wants to fit tracking devices for a hoist
and use a minimum of two carers at each visit (and expect him to
pay half the costs). He refuses to have the tracks fitted and does
not want “two people traipsing through his home.” The department
has withdrawn services and William is surviving thanks to
neighbours and friends outraged at the department’s stance.

Panel Respones

Julie Heath

This is a very unsatisfactory situation and William is currently
at risk due to the withdrawal of services by the department.
Obviously, social services have to consider risks to the health and
safety of staff providing personal support but a variety of
legislation also governs the duty of welfare towards an individual
underpinned by the National Assistance Act 1948.

William has had a very difficult time recently and will be
grieving for Lorraine; he may need bereavement counselling at some
point soon. As his life has changed so dramatically, and his main
carer has died, he should have his needs reassessed. In Derbyshire,
within the disability division, a care manager would be allocated
to review his situation and would offer William the opportunity to
participate in an outcomes-focused assessment.

Outcomes are results, goals and achievements. They are
determined by the person and facilitated by the worker (or “care
navigator” as referred to inÊthe adult care green paper). This
assessment would consider all aspects of a person’s life including
emotional well-being.

This approach to assessment empowers the individual to make
decisions and to take responsibility for important areas in their
life. William will understandably be feeling anxious about
remaining within the community especially in view of his
experiences during his childhood.

He needs reassurance from his care manager that the aim of the
intervention is to enable him to continue living as independently
as possible.

William may be an ideal candidate for direct payments as this
would help to increase his feeling of autonomy and control that he
has over his life. However, he would have to accept the
responsibility of being a “good employer” and to look after the
health and safety of his staff. He may also be eligible for
financial assistance from the Independent Living Fund which could
have a considerable impact on his personal resources.

William may benefitÊfrom peer group support which, for us,
would be available from the Derbyshire Coalition for Inclusive
Living (DCIL); this would be particularly useful during the
assessment and for providing practical help with setting up a
direct payment.

Angela Marsh

As an occupational therapist I would attempt to involve William
thoroughly in every aspect of my specialist assessment. It would be
very important to work jointly with the allocated care manager,
picking up on all of the sensitivities involved, and to engage in
theÊoutcomes-focused assessment. The case study says that “the
department wants to fit a tracking device”. This sounds
heavy-handed to me and not at all conducive to working in
partnership with William.

William needs to be given sufficient information about the
different types of tracking hoist available on the market; he could
be given literature, meet company representatives or even try a
hoist at a suitable venue.

Consideration would be given as to the suitability of a mobile
hoist and if this was not feasible to explain why.

It is important to properly explain good moving and handling
practices and the consequences of not having these in place. If we
listen to a person’s requirements and explain to them the need to
keep staff safe it is usually possible to negotiate a safe personal
handling procedure that is acceptable to all concerned.

William is very unlikely to feel safe being physically lifted
and with nothing he can do to help himself, he will probably find
being lifted a frightening experience. He may be reassured by
talking to others who are in a similar position to himself (again a
possible role for the local equivalent of DCIL). He would also feel
better if he felt confident about the abilities and skills of his
carers; this may be helped by explaining the mandatory training
received by home care staff.

Many individuals experience anxiety about being hoisted but by
talking through his fears this will give him an opportunity to help
alleviate them. The workers involved in assessing William need to
listen to the fears he may have, show empathy and be flexible in
their approach.

Depending upon local practices the installation of a
ceiling-mounted tracking hoist may be provided through applying for
a disabled facilities grant. If he is assessed as being able to
contribute then William would be asked to pay towards the cost of
his hoist.ÊHowever, if William lived in Derbyshire his home
care services would be provided free of charge.

USER VIEW:

As someone who has a similar level of disability, I imagine that
William’s response to change in his life, particularly his daily
routine, might be similar to mine, writes Simon Heng.

If you don’t have a disability, imagine being forced to alter
your routine intimate activities, like brushing your teeth, putting
in contact lenses or combing your hair. Or imagine someone else
doing this for you, under your instruction, and being told by them
that they are going to do it in a different way. Permanently. 

William will have developed his personal care routines over many
years, with his carers, to be as comfortable as possible for him,
and to ensure his physical health. Any change to the routines will
probably be regarded with suspicion, not only because it can feel
like an invasion of one’s  personal rights, but also because it
might lead to health problems. Personally, I would be worried if
someone suggested different moving and  handling techniques,
because when I have allowed other people to use other methods, I
have usually been uncomfortable and I have often ended up  with
injuries. 

William is also grieving over the loss of his partner, as well
as his routine. His whole life has changed, yet emotionally he may
not be at the stage where he can accept those changes. Putting in a
tracking hoist involves major structural changes to his home –
perhaps a permanent reminder of his losses. Involving two carers,
rather than one, might feel like too much of a change, as well as
an invasion of privacy. 

But William needs to recognise that paid carers have to follow
safe moving and handling guidelines, and to use suitable equipment.
It’s easy to be self-centred at times of stress but one of the
things that I have learned to respect is the welfare of my carers.
This doesn’t mean that one has to accept passively a particular
technique, but it does mean that one has to negotiate between
what’s comfortable for yourself and what’s safe for yourself and
other people. 

It’s great that William’s friends and neighbours are so
concerned about his welfare that they are prepared to be involved
in taking care of him. Maybe they should be involved in his care
planning. If they were helped to understand why he needs a new care
routine, and were persuaded that these changes were positive, then
maybe it would help William to be actively involved in negotiating
those changes. 

Simon Heng is physically disabled, works on service user
issues and writes for Community Care.