Health: Our drudgery, their officialdom: Local health authorities don't make it easy for Colin Wheeler to care for his disabled daughter

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Indy Lifestyle Online
If you have a mentally handicapped child and decide to keep him or her at home, you are eligible, should it be necessary, for incontinence supplies. For the 30 years we have been looking after our daughter, we have received this service. We live in a prosperous part of the commuting South-east and in April our health authority structure changed. Instead of West Surrey and North-east Hampshire Health Authority being responsible for providing our daughter's supplies, we were put under the South-west Surrey Health Authority, which now buys this service for us in the new NHS market.

These supplies consist of absorbent pads for our daughter to wear, plastic paper squares to put on the floor when she has to be cleaned, and waterproof squares that provide protection from urine for car seats and upholstery. This provision has for years been incredibly patchy - at one point there were no supplies for three months and no explanations. But in the spring our supplies were substantially reduced, and eventually diminished to an inadequate dribble without warning or any consultation. We no longer had enough to keep our daughter clean or our furniture protected.

Anyone who has to deal with local authority employees will know, first of all, how difficult it is to contact them. They are always 'in a meeting'. With persistence, I finally got through. One of the sharper lessons one learns as the parent of a handicapped child is just how difficult the 'caring professions' become if you stick your head above the parapet. Consequently, one avoids making any sort of protest - unless there is absolutely no alternative. All the misery and despair, an inevitable part of looking after a handicapped person, is multiplied enormously by contact with these people.

This time the unilateral decision to reduce our supplies so dramatically was the snapping point for me. The dismissive, patronising voice of the young woman at the other end of the telephone; her bland assurance that she was a trained adviser in incontinence and that she, who had never even met my daughter, knew better than we did - we who had coped with this life-diminishing problem for so many years - completely enraged me.

I unleashed a torrent of insults. I challenged this disembodied voice to explain how she knew better than I the best way to deal with the sordid, demeaning, endless drudgery of incontinence. When I demanded to know to whom I should complain she flatly refused to tell me. In the end my anger was so great that she named her boss.

When my completely uncharacteristic outburst ended, I telephoned my new 'name' and was promised that supplies would be reinstated. Four weeks passed. Still nothing was available. This time I tried writing to ask for a meeting, which was agreed to. Of the four people scheduled to attend, only two turned up. My meeting followed the same explosive pattern of my conversation on the phone. The mixture of boredom, irritation and indifference on the faces of these women and their embarrassment and distaste at my description of the realities of dealing with my daughter brought me to a state of furious anger again. How could I bring home to these uncomprehending people what caring for a totally dependent person is like?

But it seemed to have an effect. There was yet another wait of several weeks - bringing our period without supplies to nearly two months - then we were showered with aids beyond our wildest dreams.

For the first time we were given disposable gloves to protect our hands from faeces (standard issue for NHS employees caring for the incontinent); there were high-quality paper wipes, far more efficient than the toilet paper we normally used, and good absorbent plastic-based squares to clean our daughter on and protect our furniture.

Probably there is a good service for the incontinent buried somewhere within the structure. But I cannot comprehend why it needs so many people to provide it. I have identified five people, all with vague titles, offices, secretaries and endless timetables of meetings, who are apparently closely involved in supplying us with incontinence aids. Why must it be so complicated?

But we had counted our blessings too soon. Our supplies have again started to be delivered late, the quantities have been cut, and so has the quality. This time the reduction was at least accompanied by a letter (from yet another official) giving a brief homily on policy, but no undertaking to provide an adequate service of the supplies that we actually need. Yet again I am waiting to see if the supplies settle into any sort of reliable pattern. If not, it's back to the barricades.

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