ALTERNATIVE METHODS THEnews that a family has taken their disabled child off to some ‘alternative’ form of therapy after we therapists and doctors had worked hard to do the best for the child is not always welcomed by the professionals. Surprising feelings of anger stir in the breast; even usually mild-tempered friends have expressed anger to me about the activities of the ‘alternatives’. Don’t we sometimes have a twinge of anger when we hear that a family has gone to see another colleague? I think we would be dishonest if we did not admit that most of us do. There is a huge range of ‘alternatives’ and it is difficult to keep up with them all; and then as no less a luminary than Prince Charles has remarked: ‘this year’s alternative is next year’s orthodox treatment’. Who would have thought that massaging the limbs of severely learning-disabled children was any more than a distracting behaviour, but there is beginning to be good evidence that it does help with self-mutilation. Rather than define ‘alternative’ medicine, it may be more sensible to define what ‘orthodoxy’ is. Orthodox medicine has a history going back to the Greeks and beyond and has developed what most of us would regard as a scientific method of proceeding by observation and investigation to understand the natural history of disease and to develop treatments which are logically based on our understanding of the disease process. We therefore require a whole range of basic sciences before we can begin to practise medicine: physics, chemistry, biology, leading on to anatomy, physiology, genetics, and in the paediatric field, human developmental psychology, to mention but a few. The parents, confronted with a disabled child, are equally confronted with a multitude of therapists and doctors who do not explain to them what orthodox medicine is, but simply come up with a ‘package’ which does or does not improve the child’s functioning, despite carefully presented (and are they always carefully presented?) accounts of why we think the child is disabled and the limits of any likely treatment. Parents, not surprisingly, are going to question whether this group of experts have got it right. Why not go to another group straightaway, who spend less time assessing and diagnosing and more time in treatment? Very often the ‘alternatives’ come up with hope and promise, which, initially at least, is far more promising than the orthodox doctors’ somewhat jaundiced view about what may or may not be achieved by treatment and management. Given this situation, it is perhaps surprising that more of our patients do

not try an even wider range of ‘alternatives’ than they do. What should the orthodox do? First, early on in discussions with any family with a moderately to severely disabled child, one wants to make it clear to them that one is not the repository of.all wisdom: if they want to go and consult someone else you are happy for them to do this. That may mean that you may be able to guide them to someone who is independent- and they must be clearly independent of youbut likely to have a somewhat similar approach, Equally, the parents may seek their own ‘alternative’, and it is important to be broadly accepting of this, but to state very clearly your view that some alternative forms of therapy can be harmful. Not wishing to be sued, I won’t state here which, but I do draw parents’ attention t o some aspects of certain ‘alternatives’ which I believe can do the child harm. Sometimes, too, harm can be done by excessive amounts of time expended on what appears to be useless activity. I have found humour quite useful in dealing with some of this. The earnestness of some presentations and the parents’ reasonable anxieties about the child sometimes mean that their commonsense temporarily deserts them; stimulating it may help. I try to establish the agreement, however, that when other therapies are tried I will be (and indeed am) interested to know exactly what takes place, to hear and learn about them. It may be that I will retain a somewhat cynical view, but I will hear with interest and indeed pleasure of improvement that occurs following the ‘alternative’. However, one is left with a spur and the need to have more effective ways of dealing with the situation. Speedy and effective early communication of the

situation to the family still seems to me to be basic, and I don’t believe that we know nearly enough about how to present the information that parents need clearly, comprehensively, and in a well thought-out sequence. Of course this varies from parent to parent, but the timing and amount of information that one attempts to pass on to the family needs careful thought and appraisal. Also, one wishes that more effective therapies were available, that governments provided more support for disabled people throughout the world, and, recognizing the

enormous burdens that disability can place on people, that much more energy and drive to be given to the prevention of neurodevelopmental disorders. MARTINBAX

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