NICE GUIDELINES ON WHEN TO SUSPECT CHILD MALTREATMENT

It is frustrating when we are unable to help many of the parents who have contacted us about their problems with the current child protection system. Although the information they entrust us with is, of course, confidential, we are often at least able to use it in representations to government departments and other bodies, including preparation of NICE guidelines, usually on maternity care. In this case we commented on the guidelines for diagnosis of child maltreatment. Much of it, of course was considered not relevant or disagreed with, but we did at least have some effect on attitude to parents who had suffered bereavement (p.8), lived in poor housing (p.13) or who had overweight children (p.13)

These guidelines were published in July 2009. AIMS contributed as stakeholders by commenting on the first and second version of the guidelines. The final version which NICE published can be accessed on their website. The documents, including both versions we were asked to comment on, can be accessed at http://www.nice.org.uk/guidance/index.jsp?action=byId&o=11643&history=t or by Googling "NICE key documents when to suspect child maltreatment."

In each section we are commenting on the Full version of the guideline.

AIMS COMMENTS ON FIRST VERSION

(11 December 2006 - January 2007)

  1. ADVERSE EFFECTS.

    There is a major omission in this document. It does not mention the question of adverse effects of child abuse investigation and diagnostic processes on innocent families (or even "guilty" families - including the children). There is ample evidence from our own files, and from those of other consumer groups, as well as media reports, that this happens, and it is not uncommon. We know the resulting damage to be both serious and long term. Some of the damage will result from social or police processes, but we have ample evidence to show that damage occurs from medical investigation and diagnosis alone.

    The mere suspicion, and investigation, can be damaging in many ways, but this may be compounded by the manner of professionals, and behaviour towards carers who are suspected. A hostile, crusading, or what our clients call a "witch-finding" attitude can be present - and we have seen it lead to over-interpretation of data. Parents are also sensitive to attitudes concealed behind a superficial professional mask.

    A neutral but supportive approach should be adopted by everyone while information is sought. And medical investigation should not be undertaken unless there are reasonable grounds to do so.

    There is no epidemiological data on the frequency and depth of such harm, or the frequency of wrong suspicions and allegations. It is not in the interests of professionals and institutions to seek it, but it is in the interests of parents and the community (if for no other reason than the huge waste of money). It is the duty to NICE to draw attention to the paucity and poor quality of literature on this subject and to demand adequate research. We know of no other health care intervention which has such serious and common adverse effects which are barely mentioned in the professional literature.

    Even when abuse of some kind has occurred, we believe that the manner of investigation and professional attitudes and the aftermath, should be studied to reduce the damage we see to children, individual adults and families as a whole. Even in a family where abuse has occurred, and is admitted, only one person may be response, and that happened because they were under stress, or the whole family suffers illness, poverty or stressful circumstances. The "blame game" has gone too far.

    NICE RESPONSE:
    Unfortunately the guideline cannot cover all areas and a decision has to be made about which areas the most benefit can be gained from a guideline. Whilst we agree that the wider social impact any adverse effects of an investigation are important issues. However, the aim of this guidance is to outline the initial clinical features that should raise suspicion that maltreatment has occurred rather than the formal investigative process. Therefore this issue is not within the scope of this guidance.

  2. THE NEED FOR CLOSURE.

    At the end of an investigation, even if negative, families are left raw and distrustful, and knowing there are comments and suspicions about them on widespread records in multiple agencies. Yet children and adults will need medical care for years to come. Doctors and other professionals may need to enable the families to understand what happened and why, to learn from the families and what the experience was like for them and - in some cases - to apologise for mistakes (something we know from 40 years experience does not come easily to them). The question of correction on records, where necessary, needs to be addressed. This is a question of ethics, and not merely clinical accuracy, and we think that doctors have a clinical duty here, just as a surgeon would not leave a gaping wound.

    NICE RESPONSE:
    Whilst we agree that the wider social impact and any adverse effects of an investigation are important issues. However, the aim of this guidance is to outline the initial clinical features that should raise suspicion that maltreatment has occurred rather than the formal investigative process. Therefore this issue is not within the scope of this guideline.

  3. MULTI-AGENCY WORKING

    In child abuse investigations, there is intermingling of medical and social work "soft" data. The diagnostic work-up necessarily includes the social work file, and sometimes the police file, and they are developed concurrently. Often the medical investigation will be initiated by social work referral (or vice versa) and their suspicions - right or wrong - form the basis and foundation of the medical investigation. Since, as advocates, we see files of confidential and court documents, and attend meetings and conferences with clients, we are well aware of the deficiencies in quality, accuracy, and sadly integrity, in some social work files. We have also seen that information in the files sent to doctors and elsewhere can be highly selective. We have long experience in looking at medical errors, but problems we have found in quality and integrity of social work are of an entirely different magnitude.

    In some cases social workers seem to have the attitude that the doctor is there to "nail" a suspect for them. In such a culture, it behoves the doctor to be even more meticulous and maintain a scientific approach. They need to be aware of how "soft" the soft data can be. The "facts" recorded on widely distributed files are often mere suppositions or assertions. When families eventually are able to obtain the records, they are able to disprove some of them - but they have already been embedded in the diagnostic and forensic processes, and influenced the outcome.

    Example: a young child was taken to A & E with a lump on the head. The mother had angered local workers by making justified complaints (for which she received an official apology) for failures in past care. A hairline skull fracture was reported. The mother, who had some medical knowledge, could find no signs of it on the X-ray, which she was shown at the time. She asked for a copy of the X-ray, but it has disappeared. She was later told by a relative who works at the hospital that they have a "generous" attitude to interpreting fractures when abuse is suspected. It was judged by the court to be an accidental injury. It became clear that at the time of the fall, the child had been in the care of someone else with impeccable reputation. The child remained in care, as social workers than sought a psychiatric report.

    There are also well-known problems of multi-agency working where professionals think they understand each other's terminology and culture but do not. We have come across many examples where social workers act on medical diagnoses which they think they understand but clearly do not. In our specific work area - childbirth and neonatal care - we find many examples.

    NICE RESPONSE:

    Thank you for this information. The professional standards of people working in child protection are outlined by their own professional bodies and in the Children's Act. It is outside the scope of this guideline to examine these issues.

  4. INVESTIGATION OF BABIES

    We have seen a number of cases in which shaken baby syndrome is alleged and babies are found to have had a brain injury. We are struck by what a high percentage of these babies had been premature, or had had a difficult birth, ventouse or forceps delivery. We do not know what the baseline is of similar damage in babies with a similar birth history, or even those with normal births, which is undiscovered unless there is an allegation. We are reluctant to suggest unnecessary scans of the newborn population to establish a baseline, but it is worth considering. Even then, there is the question of how long after the birth it should be done, since we do not know how long after birth a spontaneous cranial bleed could occur. Please note, brain injury diagnosed as shaken baby syndrome may be iatrogenic1,2

    1. Knight D.B. et al. Chest physiotherapy and porencephalic brain lesions. Journal of Pediatrics Child Health 2000 37. 554-8
    2. Robinson J. Shaken baby syndrome caused by hospital care. AIMS Journal 2003 15 no. 1.1-5.

    NICE RESPONSE
    Due to the fundamental change in the focus of the guidelines the issue raised about the diagnosis of SID will not be covered by the guideline. Thank you for these references.

    AIMS COMMENT:
    Very puzzling. We were commenting on shaken baby syndrome not Sudden Infant Death!

  5. QUALITY OF HISTORIES AND FILES.

    In forty years support, complaints and sometimes litigation work, we are well aware of how common inaccuracies and gaps in medical histories can be. We also see child abuse cases where recent histories taken can be inaccurate. Without a baseline knowledge of how often such inaccuracies in files occur, it is particularly unfortunate that a parent giving a story which differs from the file - and at a time when they are under great stress - is considered deceptive and therefore likelihood of being an abuser.

    What is the baseline of inaccuracy in files and parents' failure to give a complete history when taking an injured child to casualty. And on top of this, what is the baseline of inaccuracy, omission and selectivity in the doctor recording what they actually say?

    NICE RESPONSE.
    This is an interesting point. It relates to the professionalism and competence of individual recording information However, these are issues that are outside the scope of the guideline.

    AIMS COMMENT:
    We disagree. What we have raised was a crucial issue in the criticisms of Dr Marietta Higgs' profligate diagnoses of sexual abuse of children because she found anal reflex dilation. There was no baseline of what normal children's anuses looked like, or those with bowel problems, which many of these children had.

  6. PRIOR "SCREENING".

    It has now become common practice for expectant and new mothers to be assessed by health visitors, without their knowledge or consent, and given a potential risk score as being a risk to their children. We have already criticised this process in the AIMS Journal. The tools used are highly inaccurate, with an excessive false positive rate. Nevertheless, a high score rating may lead to an increased level of suspicion and therefore a high level of unnecessary referrals - with a further risk of false-positive findings by the doctor.1,2 There needs to be examination of the validity of what is coming into the system.

    1. Barker W. Practical and ethical doubts about screening for child abuse. Health Visitor 1990 63. 14-17
    2. Robinson J. Health visitors or health police? AIMS Journal 2006 16 no 3. 1-5

    NICE RESPONSE:
    The aim of the guideline will be to outline the clinical features that should lead a professional to suspect maltreatment has occurred. The guideline is not examining risk factors for a child being maltreated such as social background. Please note that we will not be covering unborn children).

  7. LEVEL OF DAMAGE DONE.

    There are, of course, physical risks from investigation, e.g. unnecessary whole-body X-rays of young children (a risk no well-informed parent would willingly submit their child to), unpleasant investigations etc. There are also emotional risks, e.g. one child (now 12) is still traumatised by an examination for suspected sexual abuse carried out 4 years earlier - a social worker say that the way his baby sibling crawled and stuck his bottom in the air was a sure sign of abuse. The child now hates social workers and distrusts doctors. The younger sibling, fortunately, was too young to remember the experience.

    We give below some examples of adverse effects on innocent families which profoundly affect the lives of the children involved. In these it is impossible to separate the adverse effects of medical investigation alone from the effects of social work, police visits to the house, and the court process. But the medical investigation is integral to all, and is sometimes the initiating factor.

    NICE RESPONSE:
    Whilst we agree that the wider physical and psycho-social impacts of an investigation are important issues, they are beyond the scope of this guideline.

    AIMS COMMENT:
    Other NICE guidelines routinely include both benefits and adverse consequences of various interventions.

  8. MSBP. We have three cases so diagnosed where a long-standing or congenital medical condition has eventually been discovered years later in the child. It was responsible for the symptoms which had led the mother seeking investigations and for which she was subsequently blamed. In one of these cases, the mother also has since been diagnosed with a long-standing condition, which should have been diagnosed earlier from her medical history., She had repeated negative tests after her GP had referred her - but the wrong tests were done. It was all blamed on MSBP. One of the children was an adult before getting the diagnosis and meantime became addicted to street drugs in an attempt to alleviate the pain of the condition which they said was a fiction of her mothers creation. Doctors can fail to find the cause of a problem and humility is often missing. Guidelines for Factitious Illness which says that further tests should NOT be done, are dangerous. What is needed in some cases is a truly fresh second opinion.

    One of the children later developed behavioural problems as a result of the family's experiences, and both child and mother are now receiving psychiatric help for the damage done.

    NICE RESPONSE:
    Thank you. The focus of the guideline has been changed from diagnostic investigations to outlining clinical features of abuse and neglect. However, we agree the correct diagnosis is of paramount importance in these cases, primarily for the sake of the child's well-being.

  9. PROBLEMS IN WIDER SOCIETY

    The large number of children now taken into care, and the even larger numbers of families who have had a brush with investigation, has had its impact on the wider community. We received widespread reports of information circulating in local communities long before stories appeared in the media. Doctors, social workers and officials greatly under-estimate the level of "folk-knowledge" of what is happening. And this had an impact.

    The emphasis on the need for all health care workers to seek out and identify child abuse has had a noticeable effect which we find very noticeable on our helpline and other contacts. Normal parents are afraid to take their children to casualty with suspected injury and would rather wait and see. They call to tell us about what has happened and ask what they should do. The cannot even call NHS Direct for advice because they take details of name, address, GP etc. and do themselves report callers for child abuse investigation (we know of such a case.

    Mothers are more likely to conceal mental health histories in maternity care. We know of three cases where pregnancies resulted from rape, but the mothers did not tell health care workers - for fear they would be suspected of not loving the baby. The only support they had was from us. Two women who suffer serious domestic abuse will not report it for fear their children will be thought at risk and removed.

    The Edinburgh Postnatal Depression Scale - once a respected and validated tool - has been found in two reputable studies not to work, because mothers lie in reply to questions, in order to conceal postnatal depression. We knew this was happening long before the research appeared. Mothers tell us they are lying - for fear of losing their children. This is very serious when suicide is the largest cause of death associated with childbirth. The Confidential Enquiries into Maternal Death has shown that mothers are concealing serious postnatal mental illness (sometimes aided by their families). They even report suicides committed solely because mothers feared they would lose their children. Suicides of fathers, or suicides of mothers whose children are more than a year old do not appear in the statistics - but we know of cases, and think they should.

    How much harm is being done by the picture the public now has that doctors, paediatricians and midwives are seeking child abuse rather than there to support and help parents and children?

    And can doctors making a diagnosis ignore the fact that the results of doing so may be more damaging to the child than the problem they originally identified because of the culture and standards of other agencies involved?

    NICE RESPONSE
    Thank you. The guideline cannot address issues of education and information provision on a societal scale.

AIMS COMMENTS ON THE SECOND VERSION

16 December 2008 - February 2009