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Co-operation in the care of handicapped children
PtlbL tlhh, Lond. (I976) 90, 187-190
Points of View Co-operation in the Care of Handicapped Children S. D. V. Weller M.D.. F.R.C.P.(London). D,C.H.
Consultant Paediatr/cian, Royal United Hospital, Bath, U.I(. Co-operation is an "in" word and as such is much used and abused. It is often surrounded b y cliches or polysyllabic phrases that smother meaning--such as multidisciplinary management. I prefer "team work" because people can hardly consider themselves members o f a team when they do not even know each other and when they are s o m e times at loggerheads about a matter where they see their individual roles as in conflict. Members of a team respect each other, become used to working together for a common aim and are aware of their mutual interdependence. We cannot speak o f a team until this situation exists and anything less is not really good enough. Furthermore, the word team implies a leader who must co-ordinate the work being done; whether you call him a captain or something else is not important. The idea of a consensus decision is as muddled as the idea of a steering committee. Who ever .thought of steering a ship b y committee ?
aunts a~
\
/
Doctors
/
Figure l.
All care of patients is today so complex that it is inevitably a team affair, though some members o f the team may never meet the patient (e.g. the telephonist, laboratory technician or cook). This is the "'care team". Particularly in the case of children, the patient is not just an individual but a sort o f t e a m - - t h e family! We must remember that the siblings are in the "'patient team" (Weller, 1975), b u t we must not forget the parents are in both (Gordon, 1972). (See Figure 1.) The Patient Team It is because I see the parents in this dual position that I want to start with them. They are in the pivotal point o f the family team and the only members o f the care team who are always in post, always on call, never off duty.
188
S. D. V. lYeller
it is all too easy for any one of us to see the parents as working with us for their child's care and for us to assume that their attitudes in the situation are just the same ,as our own. We must constantly remind ourselves that they are also on the receiving end and that they need care and help. Their needs may be tremendous and are not just met by occasional reassurances that they are doing a grand j o b and by a fortnight's holiday in the year with their child being looked after in the children's ward or a special holiday home. By our failure to appreciate this truth we may in effect use the handicapped child to shatter the unity and cohesion of his family and so damage his own welfare. Our aim, unattainable but nevertheless our aim, should be that the parents o f a handicapped child should give as much time to him as to their normal child and get as much pleasure from him (and as much relief from him) as from their normal child. In industry, a demanding j o b is better paid and granted longer rest periods than a simpler one. If for no other reason, this is for safety's sake, as with airline pilots or the driver of heavy lorries. But we expect parents who have already suffered the devastating disappointment o f having a child with a handicap to give him more time, to accept greater social restrictions and to do this through hours of day and night that make the sweated labour o f the industrial revolution look like a holiday. Whatever compassionate view we may take of the handicapped child, we must bear in mind that having such a child or sibling is a social handicap to each and every member of the family team. That this is true may be strenuously denied by the use of such expressions as, "but we love him"; or it may be admitted reluctantly, defiantly or from despair. The problem posed by the patient evolves and alters both for him and for the family team concerned with it. We all accept that oor assessment o f the situation includes a detailed profile of the disability (and still more o f the abilities) of the child and that this is a continuing p r ~ e s s . It is just as important that we should take a keen, sympathetic and on-going interest in the whole family. Come to any unit treating, say, spastic children or those with spina bifida and you will come across str~sed families. Some grow stronger under strain and I am regularly made to feel humble by those who cope with ordeals that I know I could not manage. But some families have great difficulty and some fail. Many o f these children, on top o f their original burden, have the added one o f a broken home. I have been so impressed with this sequence of events that I have, over years, made a collection o f patients that I have come to call, somewhat emotively, home wreckers (Weller, 1974). Furniture, windows and crockery may be damaged, but I have been more concerned by the broken marriage or the nervous breakdown. The dreadful thing is how seldom I have managed to give adequate support or enlist it from the community before the breakdown has occurred. In my view, signs of the home cracking or o f severe sibling stress (as, for example, the near successful attempt at suicide of a brother) should call for ceordinated action at least as quickly and thoroughly as does a battered baby. m e Care +ream The composition and mode of working of the care team will vary with each family and child who come for help. Each team member will be aware of the need (he may consider it the paramount need) for his own discipline to be involved. For different problems it may be appropriate to have different leaders, but most teams (as in sport) function best under a regular one. He, or the team, may well appoint a key worker, perhaps chosen for particular skills, to be the contact with the family. "]['his should be some one likely to be in post for a time long enough for useful rapport to be established and maintained.
Points of view--care of handicapped children
189
We live in the age of the specialist, which is why teams are inevitable. Our Social Services are still in some confusion from an attempt to revert to generalists, in the field of cerebral palsy, we know o f the system of management (Peto) where a single therapist will care for an individual child and try to provide all the varied types of treatment he needs. In spite o f such examples, most of us are aware of th ~ inexorable trend towards specialization and the need for us to help each other where the skills of one complement those of the rest. One of the changes (and opportunities for either chaos or advance) in our presenl scer~e concerns the roles o f workers whose jobs are new or still ill-defined. The Seebohm reorganization in 1972 caused a seismic convulsion in the Social Services and the dust is still settling. The Health Service reorganization of 1974 had similar effects. It flushed away the jobs o f many doctors, notably the medical officer o,~ health, and created, almost in a vacuum, new posts such as community physicians, specialists in child health and clinical community paediatricians. The holders of these posts are still finding their feet, feeling their way, defining their objectives, mobilizing their resources and generally sorting through the nitty gritty nuts and bolts that seem to be tangled up in the grass roots. The care team has been blown apart and has to re-form itself. What does all this mean to the handicapped child? Assessrn~~z:::zz::zz~Treotmen! Educotion~/ Figure 2. We may tend in our minds to divide the process of care into parts as if they were separate, though interlocking, bits of a jigsaw. There is discovery, assessment, therapy, education, support, employment and so on. But many of these parts are not so much interlocking as inseparable. Each session of teaching or treatment is also one o f assessme~it which modifies the next session of treatment or teaching (Figure 2). They all are part of care and that is why one talks o f a care team. At any one moment, effort may be Concentrated on one aspect of a child's needs, but it is always a child we treat, not simply an athetoid cerebral palsy or a behaviour disorder or a specific learning difficulty. In general, all children will require the help of experts in the fields of education, health and social services (these are in alphabetical order). In a good team, members will gradually learn a good deal about each other's fields; without this knowledge, they are not, in fact, able to work well together because they have only poor understanding of each other's viewpoint. Bax (1974) remarks on the fact that parents often ask their doctors for advice about schooling, though many doctors know little about the subject. Doctors may arrange special schooling for children without even knowing anything about the school they are using. In this context one must emphasize the following points: (I) Few children have a single pure handicap. (2) Emotional disorder is the commonest handicap. Physical problems without it are rare. (3) Early recognition and treatment is axiomatically beneficial; but anxiety over an insignificant variation or a self-adjusting condition can be a high price to pay. (4) Treatment and assessment are aspects of a programme that may last for the whole o f a patient's life. Plans must have continuity in spite of changes in the membership of the care team; they must be flexible enough to respond rapidly to changes in the needs of the child or his family. Plans must not stop at an arbitrary age or stage, even if patterns or places o f care may need to change.
190
S. D. V. Weller
(5) At any one moment, one person, well know to the family, must be their designated "'key worker", responsible (and recognized by other team members to be responsible) for the implementation and integration o f the plan of action for the individual child. The key worker must be able to summon help from other members of the team with minimum delay in emergencies. Parents should be able, usually through the key worker, or in certain circumstances directly, to call on the expertise o f the team without waiting for a routine assessment or treatment session. (6) The ch;.Id's care may be based on hospital, school, surgery or other place, depending on local facilities and perhaps the duties or office of the key worker. (7) We must beware of any dogma, especially if it would have us demolish the old because it is not wholly good, before we have something to put in its place; and that something must not be just new but tried and tested. (8) Problems o f handicap are long-lasting. Panic action may be necessary but tells us that we have failed to anticipate and prevent a crisis. Our resources are likely to be slender; we must not squander them. Sustained effort is more economical than sudden short spurts of activity and likely to be better directed. The motto for our teams should be "'Festina lentemhurry slowly". References Bax, M. 0974). Doctors and schooling. Developmental Medicine and Child Neurology 16, 1-2. Gordon, N. (1972). Parent counselling. Deve/opmemal Medicine and Child Neurology 16, 657-9. Weller, S. D. V. (1974). Home wreckers. World Medicine, October 23rd, 7. Weller, S. D. V. (197_5). The patient is a family. World Medicine, November ]9th, 36-8.
Points of View Co-operation in the Care of Handicapped Children S. D. V. Weller M.D.. F.R.C.P.(London). D,C.H.
Consultant Paediatr/cian, Royal United Hospital, Bath, U.I(. Co-operation is an "in" word and as such is much used and abused. It is often surrounded b y cliches or polysyllabic phrases that smother meaning--such as multidisciplinary management. I prefer "team work" because people can hardly consider themselves members o f a team when they do not even know each other and when they are s o m e times at loggerheads about a matter where they see their individual roles as in conflict. Members of a team respect each other, become used to working together for a common aim and are aware of their mutual interdependence. We cannot speak o f a team until this situation exists and anything less is not really good enough. Furthermore, the word team implies a leader who must co-ordinate the work being done; whether you call him a captain or something else is not important. The idea of a consensus decision is as muddled as the idea of a steering committee. Who ever .thought of steering a ship b y committee ?
aunts a~
\
/
Doctors
/
Figure l.
All care of patients is today so complex that it is inevitably a team affair, though some members o f the team may never meet the patient (e.g. the telephonist, laboratory technician or cook). This is the "'care team". Particularly in the case of children, the patient is not just an individual but a sort o f t e a m - - t h e family! We must remember that the siblings are in the "'patient team" (Weller, 1975), b u t we must not forget the parents are in both (Gordon, 1972). (See Figure 1.) The Patient Team It is because I see the parents in this dual position that I want to start with them. They are in the pivotal point o f the family team and the only members o f the care team who are always in post, always on call, never off duty.
188
S. D. V. lYeller
it is all too easy for any one of us to see the parents as working with us for their child's care and for us to assume that their attitudes in the situation are just the same ,as our own. We must constantly remind ourselves that they are also on the receiving end and that they need care and help. Their needs may be tremendous and are not just met by occasional reassurances that they are doing a grand j o b and by a fortnight's holiday in the year with their child being looked after in the children's ward or a special holiday home. By our failure to appreciate this truth we may in effect use the handicapped child to shatter the unity and cohesion of his family and so damage his own welfare. Our aim, unattainable but nevertheless our aim, should be that the parents o f a handicapped child should give as much time to him as to their normal child and get as much pleasure from him (and as much relief from him) as from their normal child. In industry, a demanding j o b is better paid and granted longer rest periods than a simpler one. If for no other reason, this is for safety's sake, as with airline pilots or the driver of heavy lorries. But we expect parents who have already suffered the devastating disappointment o f having a child with a handicap to give him more time, to accept greater social restrictions and to do this through hours of day and night that make the sweated labour o f the industrial revolution look like a holiday. Whatever compassionate view we may take of the handicapped child, we must bear in mind that having such a child or sibling is a social handicap to each and every member of the family team. That this is true may be strenuously denied by the use of such expressions as, "but we love him"; or it may be admitted reluctantly, defiantly or from despair. The problem posed by the patient evolves and alters both for him and for the family team concerned with it. We all accept that oor assessment o f the situation includes a detailed profile of the disability (and still more o f the abilities) of the child and that this is a continuing p r ~ e s s . It is just as important that we should take a keen, sympathetic and on-going interest in the whole family. Come to any unit treating, say, spastic children or those with spina bifida and you will come across str~sed families. Some grow stronger under strain and I am regularly made to feel humble by those who cope with ordeals that I know I could not manage. But some families have great difficulty and some fail. Many o f these children, on top o f their original burden, have the added one o f a broken home. I have been so impressed with this sequence of events that I have, over years, made a collection o f patients that I have come to call, somewhat emotively, home wreckers (Weller, 1974). Furniture, windows and crockery may be damaged, but I have been more concerned by the broken marriage or the nervous breakdown. The dreadful thing is how seldom I have managed to give adequate support or enlist it from the community before the breakdown has occurred. In my view, signs of the home cracking or o f severe sibling stress (as, for example, the near successful attempt at suicide of a brother) should call for ceordinated action at least as quickly and thoroughly as does a battered baby. m e Care +ream The composition and mode of working of the care team will vary with each family and child who come for help. Each team member will be aware of the need (he may consider it the paramount need) for his own discipline to be involved. For different problems it may be appropriate to have different leaders, but most teams (as in sport) function best under a regular one. He, or the team, may well appoint a key worker, perhaps chosen for particular skills, to be the contact with the family. "]['his should be some one likely to be in post for a time long enough for useful rapport to be established and maintained.
Points of view--care of handicapped children
189
We live in the age of the specialist, which is why teams are inevitable. Our Social Services are still in some confusion from an attempt to revert to generalists, in the field of cerebral palsy, we know o f the system of management (Peto) where a single therapist will care for an individual child and try to provide all the varied types of treatment he needs. In spite o f such examples, most of us are aware of th ~ inexorable trend towards specialization and the need for us to help each other where the skills of one complement those of the rest. One of the changes (and opportunities for either chaos or advance) in our presenl scer~e concerns the roles o f workers whose jobs are new or still ill-defined. The Seebohm reorganization in 1972 caused a seismic convulsion in the Social Services and the dust is still settling. The Health Service reorganization of 1974 had similar effects. It flushed away the jobs o f many doctors, notably the medical officer o,~ health, and created, almost in a vacuum, new posts such as community physicians, specialists in child health and clinical community paediatricians. The holders of these posts are still finding their feet, feeling their way, defining their objectives, mobilizing their resources and generally sorting through the nitty gritty nuts and bolts that seem to be tangled up in the grass roots. The care team has been blown apart and has to re-form itself. What does all this mean to the handicapped child? Assessrn~~z:::zz::zz~Treotmen! Educotion~/ Figure 2. We may tend in our minds to divide the process of care into parts as if they were separate, though interlocking, bits of a jigsaw. There is discovery, assessment, therapy, education, support, employment and so on. But many of these parts are not so much interlocking as inseparable. Each session of teaching or treatment is also one o f assessme~it which modifies the next session of treatment or teaching (Figure 2). They all are part of care and that is why one talks o f a care team. At any one moment, effort may be Concentrated on one aspect of a child's needs, but it is always a child we treat, not simply an athetoid cerebral palsy or a behaviour disorder or a specific learning difficulty. In general, all children will require the help of experts in the fields of education, health and social services (these are in alphabetical order). In a good team, members will gradually learn a good deal about each other's fields; without this knowledge, they are not, in fact, able to work well together because they have only poor understanding of each other's viewpoint. Bax (1974) remarks on the fact that parents often ask their doctors for advice about schooling, though many doctors know little about the subject. Doctors may arrange special schooling for children without even knowing anything about the school they are using. In this context one must emphasize the following points: (I) Few children have a single pure handicap. (2) Emotional disorder is the commonest handicap. Physical problems without it are rare. (3) Early recognition and treatment is axiomatically beneficial; but anxiety over an insignificant variation or a self-adjusting condition can be a high price to pay. (4) Treatment and assessment are aspects of a programme that may last for the whole o f a patient's life. Plans must have continuity in spite of changes in the membership of the care team; they must be flexible enough to respond rapidly to changes in the needs of the child or his family. Plans must not stop at an arbitrary age or stage, even if patterns or places o f care may need to change.
190
S. D. V. Weller
(5) At any one moment, one person, well know to the family, must be their designated "'key worker", responsible (and recognized by other team members to be responsible) for the implementation and integration o f the plan of action for the individual child. The key worker must be able to summon help from other members of the team with minimum delay in emergencies. Parents should be able, usually through the key worker, or in certain circumstances directly, to call on the expertise o f the team without waiting for a routine assessment or treatment session. (6) The ch;.Id's care may be based on hospital, school, surgery or other place, depending on local facilities and perhaps the duties or office of the key worker. (7) We must beware of any dogma, especially if it would have us demolish the old because it is not wholly good, before we have something to put in its place; and that something must not be just new but tried and tested. (8) Problems o f handicap are long-lasting. Panic action may be necessary but tells us that we have failed to anticipate and prevent a crisis. Our resources are likely to be slender; we must not squander them. Sustained effort is more economical than sudden short spurts of activity and likely to be better directed. The motto for our teams should be "'Festina lentemhurry slowly". References Bax, M. 0974). Doctors and schooling. Developmental Medicine and Child Neurology 16, 1-2. Gordon, N. (1972). Parent counselling. Deve/opmemal Medicine and Child Neurology 16, 657-9. Weller, S. D. V. (1974). Home wreckers. World Medicine, October 23rd, 7. Weller, S. D. V. (197_5). The patient is a family. World Medicine, November ]9th, 36-8.