Over the past 18 months I have been involved in supporting a
package of care to a highly dependent male relative who suffers
from multiple sclerosis. In many areas the private sector is the
only provider of 24-hour care to highly dependent adults living in
the community. I have considerable reservations about this
trend.
The provision of such comprehensive packages of care places very
particular demands on providers. Much private sector home care
seems to have developed from services designed to offer domestic
help to individuals who have always bought assistance on the
private market. As a consequence there is a lack of understanding
of the needs of highly dependent clients and a limited grasp of
professional principles of care.
One of the first problems we faced was the carer's lack of
understanding of the professional task. Boundaries were often
transgressed and a caring relationship was refashioned by one carer
into a romantic affair.
Agencies seem willing to allow carers to spend up to 10 weeks,
without a break, giving 24-hour care to a client. This is a
strategy used to deal with staff shortages and one which is
accepted by social services. But it means the private world of
carers increasingly intrudes on their responsibilities as
workers.
There seem to be no clear policies designed to protect clients
from carers eating their food or using their telephone for personal
calls. When the care package was first set up I had to challenge
the assumption that the client would simply absorb these costs.
An assumption is made that individual carers will negotiate with
their clients in respect of this, but this takes no account of the
inability of highly dependent clients to undertake these
negotiations. Also, several carers will have been involved in a
client's care and it is very difficult to ensure that clients are
properly reimbursed.
There are no clear guidelines for "handing over". During the
past six months this has resulted in carers being unaware of how
much is in the bank account set up to handle day-to-day living
expenses, the chair lift being out of action for a week and the
washing machine for six weeks.
Then there is the wider issue of how realistic it is to expect
poorly paid, untrained staff to handle the complex demands of
caring for a highly dependent adult. My experience is that an
expensive care package made up of local authority funding, the
Independent Living Fund and health authority money relies too
heavily on key family members.
Private and voluntary agencies may be more suitably placed to
deal with less dependent clients. However, if they are to become
closely involved in caring for people who are highly dependent this
must be accompanied by clearer, more detailed guidelines to meet
the needs of these clients.
There need to be clearer policies for the training and
professional development of staff, stricter control of the
conditions of service, and clear guidelines to safeguard the
financial interests of clients whose means-tested care package will
almost certainly mean they are living on the margins of
poverty.