Develop. Med. Child Neurol. 1976, 18, 285-286

EDITORIAL THE RESTORATION OF THE PARENTS AS THE

KEYSTONE OF THE THERAPEUTIC ARCH

ON 5th May 1726, fifty years before the American Revolution, a new hospital in London admitted its first patients. Mr. Guy’s hospital was to be for the chronic sick. For the chronic lunatics there were already hospitals like St. Luke’s and the Royal Bethlem, but there was nowhere to go for those discharged from hospital because no more could be done for them. Mr. Guy’s idea of providing longer-term treatment for the chronic sick was a new, humane and admirable advance. But in the 19th century and the first half of the 20th century the idea of treating the chronic sick was abandoned at Guy’s hospital, which took only the acutely ill. The chronic sick received custodial care in long-stay hospitals for the incurable, consumptives and the insane.

Later, with rising economic standards, immunisations and anti-bacterial drugs, physicians again gave attention to helping the chronic sick. Ortho- paedic surgeons turned to caring for the cerebral-palsied and were joined in the task by paediatricians and others,

It is slowly dawning on health practitioners that patterns of care needed for children and others with continuing disorder differ from those evolved for meeting the needs of the acutely ill. We decide that treatment ought to be started early. To discover handicap early, it becomes evident that we need population services at primary level so that all children can be examined periodically and developmental delay discovered. The children found to have developmental delay go to specialists who give comprehen- sive examination, diagnosis and assessment and plan comprehensive care. It is realised that handicap is usually multiple and that teams which include physicians, therapists, teachers and social workers are needed.

The centre of gravity of the continuing specialized services for the handicapped is moving from the hospital wards to out-patient clinics, which is another major change.

But a greater advance has emerged-the discovery of the central part that parents play. This stems from two sources. One is that the eventual outcome for the handicapped person depends on his personality and that this derives from interaction of the child with his parents. The support and guidance given to the parents from the earliest time of discovery seems of immense importance, as well as the provision of orthopaedic, medical and

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other treatment. The other reason is the recognition of the importance of stimulation and the encouragement of language development, and that physical therapy given by the parents repeatedly, every day, at home is far more efficient than when given by a therapist or therapists for half an hour once a week.

With these changing attitudes the techniques of delivering health care to children and their parents are likely to be different. We have learnt that guidance given in the home is more successful than when it is given in the clinic. The economy of saving doctors’ and therapists’ time by making parents bring children to hospital is often a false economy. We have peripatetic teachers for blind and deaf children : we should also have them for the cerebral-palsied and mentally handicapped.

After years of lip service we are realising the true importance of the parents’ contributions to the care of handicapped children and the need for our support and guidance to the parents to be efficiently done. Can we hope that very soon no doctor will receive a Board licence or recognition as a specialist unless he has received training and shown proficiency in interviewing and communicating, as well as in managing renal dialysis or complex orthopaedic procedures ? We still give our kindly guidance when the news that the child is spastic or mentally retarded is yet reverberating in the parents’ ears. Days, weeks or months later they may suddenly be struck with anxiety and want to ask urgent questions.

In this care and support function, the doctor will recruit assistants who will visit the families in their homes. They may be specially trained nurses, or volunteers who receive a three-months training (as Dr. Barry Pless found to succeed in Rochester, New York).

Would giving a telephone to all families with a handicapped child be a better way of providing parental support, with the aim of obviating the need for handicapped children to go into long-term care rather than having extra sessions from an orthopaedic surgeon, paediatrician, therapist or teacher? And if so, who would man the switchboards to answer the questions?

The French, in a calculated move to save money, have put ~200,000,000 a year into preventing handicap. Are not measures to support and guide parents and to prevent secondary handicap also likely to give a rich economic return? It is a very different approach and it concerns all of us. Health visitors, nursing aides, physical therapists and social workers can all give help, and physicians can serve their patients in a major way by thinking about these aspects of over-all patient care as well as the more narrowly medical ones.

RONALD MAC KEITH

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