A break free of caring?

Case study

Situation: Dolores Cooke (names have been changed) is the main
carer for her adult son, George, who has an acquired brain injury
after a near-fatal drug overdose some eight years ago. Although
providing most of her son’s care herself, she does receive
some help, in terms of home care, to bathe George. She also uses
the Put-To-Bed service.

Problem: Taking advantage of her right to a separate assessment
as a carer, she has declared the need for some time to herself,
away from caring for George. She would like two evenings away from
home each week. Unless Dolores can take some time away from the
situation, there is a high risk that her health will suffer, and
that she will no longer be able to care for her son. The difficulty
is that George has a tracheostomy. This was performed because of a
permanent obstruction in his airway. An artificial opening was made
in the trachea (windpipe) into which a tube has been inserted. It
is through this tube that George breathes. It is necessary to keep
the airway clear by sucking out the secretions that form.

The local social services department will not allow its
employees to perform invasive procedures, and there is a high risk
that George may choke unless his trachea is regularly cleared. No
party has been able to offer a solution to this impasse.

Panel responses.

James Lampert
This scenario throws up some interesting dilemmas for all
involved with this case. It is possible that, after assessment,
George may be deemed to meet the criteria for his care to be funded
entirely by the National Health Service. Following guidance in 2001
from the Department of Health, continuing care agreements for older
people and disabled people had to be rewritten by April this year.
This was to ensure that they met with the requirements of the DoH
circular and were compliant with the Devon versus ex-parte Coughlan
judgement.

The issue here seems to be more about the delivery of care that
George requires rather than who might have ultimate responsibility
for funding it. One of the problems is that the authority has a
policy that does not allow carers to undertake invasive procedures,
such as suctioning. This policy varies from one local authority to
another. Since this problem has arisen, it is likely that there is
no clear policy in place with guidance about what to do. Every
authority should have a clear continuing care policy in place.

An assessment needs to be done by a relevant health-care
professional to judge whether a procedure is clinically safe, if
staff are to care for someone at home. Home care assistants could
have training to undertake specific procedures for individuals. It
may be that the local primary care trust does not see a role for
nurses or physiotherapists to become involved only for
suctioning.

It is clear that joint working between health and social
services is important in this situation. Hopefully, decisions can
be made more easily about the most appropriate person to carry out
this care, if both organisations are communicating openly. Both the
NHS and local authorities would support assisting people to live at
home wherever possible.

It would be worth trying to negotiate with the local primary
care trust to see whether it would fund the cost of an agency nurse
to provide respite in the home.

If there is a continuing dispute the case could be taken to the
independent review panel, as its role has been extended since the
publication of the continuing care health service circular/local
authority circular.

Samantha Robinson
Following a carer’s assessment it has been accepted that
Dolores Cooke is experiencing a high level of stress caring for her
son. There is a risk that her health will suffer if she continues
to care for him without a break or services to relieve the stress
and to enable her to continue to care for him. She has expressed
that she would like two evenings away from home each week.

We should make sure that information about local carers’ support
groups or networks are provided to Dolores. These independent
organisations are able to provide advice or maybe advocacy, if she
needs. This may be helpful to Dolores if disputes arise between
health and the local authority.

There are a number of services that could be considered to
enable Dolores to carry on supporting her son at home. In Kingston
we have a relief care scheme, which allows the carer to purchase
specific hours from a private agency for planned or emergency care
within the home. This allows the carer flexibility and choice to
decide when he or she takes a break. Also, friends and neighbours
can be employed by Kingston to provide relief care. Other boroughs
may be able to access similar schemes as long as the carers are
able to carry out invasive procedures.

Respite care is another option, which could be considered in
this situation. This would ensure that Dolores has regular breaks
throughout the year. This could either be hospital admission
arranged by the GP or nursing care arranged by the local authority
at a registered care home.

It may not always be possible to provide care at home. There are
several reasons that may make it impossible to meet the stated
clinical needs safely – for example, if it is not possible to find
appropriately skilled staff or the cost of the care package exceeds
the cost of a care home bed.

Changes in policy and guidelines on good practice have helped to
remove some of the barriers between health and social services.
This is leading to more effective joint working so that complex
cases, such as this example, can be resolved without causing
unnecessary stress to users and their families.

– The panel acknowledges help from Simon Cole, principal manager
placements, Kingston, with this article.

User view

Several questions spring to mind with this scenario, writes
Marian Smith. If George has had a full assessment of his needs, do
they really show that his needs are best met by his mother? A cynic
might say this is an easy and economic assessment of his needs by
the social services department.

I do not doubt that George and Dolores have a good relationship,
but what about their relationship as mother and adult son? Having
experienced both sides of being a carer and someone who uses
services I am aware of the tensions and difficulties that arise
when relationships become muddied in this way. I don’t know any
young men who would feel comfortable having their intimate,
personal care needs met by their mother if other choices
existed.

If the social services department truly believes George is best
cared for by his mother it is failing in its duty to look after her
needs. Asking for help as a carer is difficult. The guilt you feel
for not coping is enormous, outweighed only by the need to get some
small part of your own life back.

The social services department seems to be guilty of
short-sightedness. At present it is getting an economic solution to
what is likely to be a complex and expensive care package. What
will its response be when Dolores does become ill or too
overwhelmed to cope? Will George be shunted off to hospital or
nursing care?

What is needed is a can-do, rather than a can’t-do, attitude.
One solution is to find two or three members of staff prepared to
be trained in the procedure of sucking out the airway. Presumably,
Dolores is not a trained nurse and has managed to master this
procedure. If this is not possible the department needs to work
with the health authority to find a solution.

These members of staff could form the basis of a regular care
group to take over George’s personal care and provide support to
him and his mother.

Introducing support now and allowing everyone to become
comfortable with alternative care arrangements will give everyone
the “comfort” barrier needed to allow a smooth transition as time
goes on and more support is needed.

More radically, I might suggest that another, more honest
assessment of George’s needs is carried out – one that looks at his
social needs too. Perhaps, for example, George would like to have
one or two nights out each week, as young men do.

Marian Smith is a disabled person.