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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.

Thursday 27 April 2000 00:00

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.

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