Child Abuse Review Vol. 1: 194-197 (1992)

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Medical Notes

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Merry Cross Disabiltty Activist, Consultant and Trainer 6 Redbourn House Locksley Estate Poplar London E 14 7TG

‘Where no understanding i s created procedures which must be enforced become abusive’

Abusive Practices and Disempower- ment of Children with Physical Impairments

hese notes are written mindful of the concepts of the T ‘best interests of the child’ and ‘ascertaining children’s wishes’ contained in the Children Act, 1989 and of several recent cases of sexual assault of children while in hospital. Certain practices in health settings serve to disempower children and young people with disabilities, others are further along the spectrum towards abuse and should be regarded as abusive practice. Some of the observations made in relation to clinical practice have implications for all children.

Explanation and Permission

Some may think it is obvious that children and young people with disabilities need relationships to be established and, after explanation, to give permission for procedures; in reality both are regularly overlooked. Without such a rela- tionship and some sort of cooperation and understanding, procedures which must then be enforced become abusive. This may be because they hurt, because they are invasive or because they alienate the youngster from some part of his or her body. We note and welcome recent research and de- velopments at Great Ormond Street Hospital which, having established that children have been denied adequate pain control, implemented changes to ensure that this no longer happens. Some children with physical impairments, because of the nature and relative frequency of surgery, have suffered greatly from preventable pain.

Even in emergency situations, some form of explanation can often be provided. There will be certain situations in which, if permission is denied, the professional may need to go ahead anyway. In this case an apology can be made and a promise that it will be hished as soon as possible. Bribes are

0 1992 by John Wiley & Sons, Ltd

Medical Notes 195

not recommended as they set a dangerous precedent (‘If you come with me 1’11 give you some nice sweets’) and have im- plications for issues of child protection.

Particular care should be taken during all aspects of operative care-prey during and post. Obviously explana- tions are essential, and many hospitals do now expend time and effort in doing this.

The administration of general anaesthetics to children with disabilities requires particular care. These children and young people often see themselves as bad and deserv- ing of mistreatment and the thoughtless administration of general anaesthetics can be experienced as an attempt on their lives. This will reinforce their view of themselves as bad and deserving of punishment-the worst possible pun- ishment.

Examination and Treatment

When gait is to be examined, as with any other procedure, permission should be sought, especially if removal of clothing is require. The child/young person should also be asked whether or not he or she is happy for non-essential personnel (secretaries, students, etc.) to be present, and the reply respected. The procedure should not proceed if the young person states that he or she cannot walk, and should not be prolonged where it clearly causes distress (whether physical or emotional). Removal of clothing may be ex- perienced by even very young children as being forced to expose themselves even when knickers can be kept on, and therefore needs to be done with the utmost sensitivity. The same approach should apply to the use of medical photo-

Disabled people (of all ages), and their carers, are often pressured into accepting unnecessary investigations, equip- ment and procedures, including major surgery, in the name of making them ‘appear more normal’. This represents not only a denial of the person’s identity but a serious attack on their sense of self-worth. The question needs to be asked, ‘Who are we really making more comfortable?’.

Some physical impairments have associated bladder and bowel problems. These are sometimes dealt with in ways that cause both physical and emotional distress, when simple dietary or other improvements could have solved the problem. This is an example where children can feel unable to challenge practices that adults would complain about.

graphy *

‘The administration of general anaesthetics to children with disabilities requires particular care’

‘Removal of clothing may be experienced as being forced to expose themselves’

196 Cross

‘Children and young people may need as much privacy as may be afforded to adults’

‘Abuse by all types of medical and paramedical workers needs to be addressed in national and local policy guidelines’

Equipment

Some orthopaedic equipment, such as calipers which fit around the thigh, raise specific problems. Fitting them re- quires that skirts and trousers be taken off or kept well out of the way. Professionals should not fool themselves that their amtude of being only interested in the leg or caliper is enough to protect the young person from embarrassment. A lot will depend on the young person’s previous experiences, in and out of medical settings. The presence of a safe adult is very important, but professionals also need to remember that children and young people may need as much privacy as may be afforded to adults. While total privacy is not always poss- ible, it is crucial that workers in these situations are sensitive and responsive to the youngster’s reactions.

Good care should also be taken about the fit of the equip- ment where it is close to sexual parts of the body, so that they are not bruised, cut or damaged. This may seem too obvious to state, but cases have occurred where either the carelessness of technicians or lack of matched replacements caused such injuries.

Additional issues arise for girls who wear such equipment and who are pubescent. Calipers stained with menstrual blood, with no provision to clean it and the knowledge that male technicians will probably see it, can be humiliating and distressing.

Abuse by Medical Personnel

Finally, an increasing number of incidences of abuse by all tyges of medical and paramedical workers are coming to light. This needs to be addressed in national and local policy guidelines, mining, and possibly in individual job contracts. It is still easily overlooked because of the tremendous faith we all tend to place in medical personnel.

Recommendations

1. As a matter of course, every medic or paramedic beginning to work with a child with physical disabilities seeks to develop a relationship of mutual trust and respect.

2. Children are given an explanation as far as possible, in terms that they can understand, both of what will happen and why. Agreement to go ahead should be sought.

3. Interpreters for minority languages, including sign lan- guage, should be used whenever necessary.

Medical Notes 197

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Where a procedure must go ahead despite lack of permis- sion, explain why that is, and tell the young person clearly what to expect during and after it. Treat operations with particuiar care, giving young people information and reassurance at every stage, regardless of their age, and whether or not you think they are conscious. Where examination of the body, whether supine, during gait, or through photography, involves the young person in being exposed, the procedure be done with utmost sensitivity. That (a) a safe adult be as close as possible; (b) explanations are given and permission sought; and (c) non- essential personnel are excluded. In the case of photography, the photographers be intro- duced and given time to form some relationship of trust before proceeding, in addition to suggestions in (6) . Fur- ther, that the same procedure hold true for the viewing of photographs. Thus, young people should not have to sit through watching a photograph of themselves naked or nearly naked being passed around a group of people they do not know. On the other hand, they should be given the choice of seeing the photo/s for themselves first, or not seeing them at all if they do not want to. Staff must respect at all times the value of difference, and avoid all equipment or procedures designed merely to mimic ‘normality’ unless there is overwhelming evidence for t h i s being an emotional need of the child or young person concerned. Incontinence or constipation must be treated with sensitivity and in such a way as to minimize physical and emotional distress. In situations where young people must lift or take off skirts or trousers, workers should anticipate potential emotional difficulties and afford the childyoung person both respect and as much privacy as is possible and judged necessary for that particular young person. In particular, avoid leaving them unclothed when that is not necessary, especially when other people may be wandering in and out. When pubescent girls are wearing equipment that fits close to the urinogenital openings, a nurse should talk to either the girl herself or, if necessary, the mother or female carer about the best way to handle mensrmation and cleaning of equipment. The DOH and local health authorities should add to their policy and guidelines how to deal with suspected abuse by colleagues, and a register of known abusers should be developed for health workers in a similar way to those for education and social work staff.

‘Stafl must respect at all times the value of dzflerence ’