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)
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.
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.
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.
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
Knight D.B. et al. Chest physiotherapy and porencephalic brain lesions. Journal of Pediatrics Child Health 2000 37. 554-8
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!
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.
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.
Barker W. Practical and ethical doubts about screening for child abuse. Health Visitor 1990 63. 14-17
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).
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.
Withdrawal of a child from nursery because the mother felt the teacher had betrayed her by being involved in an investigation and could never now be trusted.
Withdrawal of children from school by a number of families for similar reasons. Home education is used instead - apparently successfully. Fortunately the parents are making efforts to keep the children in touch with their peers in the community.
Avoidance of NHS care for both adults and children in the family. Increased use of alternative medicine, private medicine, or medical care abroad. Chronic and serious illnesses not monitored because sick parents could not trust, or face seeing, doctors. We know a number of adults we consider at risk, for this reason.
Concealment of future problems from doctors, midwives, teachers, health visitors, etc. Because of shared records, there is no no-one within the system they can trust. Those who run totally confidential helplines, like ourselves, are privy to information which would be helpful for those providing medical care and education of adults and children in these families. And, of course, there is no-where they can go for help with the trauma caused by the intervention, unless they can find, and afford, a trusted private therapist. These problems can be serious. We believe that members of some families involved in long-term cases, have chronic PTSD.
Emigration. Shattered and damaged links with extended family resulting in losses of contact which we know to be serious in some children, e.g. the son of a single mother is now cut off from male relatives whom he was close to.
Parents' loss of confidence in their own parenting. Becoming fearful of making decisions, and how their behaviour with their children will look to others. Fearful of the child getting any minor injury or bruise.
Destruction of parental authority in children's eyes. This may be particularly damaging to families struggling in adverse social surroundings, or black parents in areas where they are racially harassed (There are useful studies in the US on specific problems of being a black parent).
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.
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.
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
Section 1.1. p.14
We do not doubt that there are abused and neglected children who are not on the register and should be. But registration rates vary greatly over time, and by local authority, and are affected by style of social work practice (e.g. intensive and high quality early investigation may reduce the need for registration1 The necessity for some registrations is hotly disputed by parents - and some are subsequently supported by the courts (e.g. Leeds County Council v Mrs YX [2008] EWHC (Fam) 14 March 2009). It would be more acceptable to acknowledge that there are inaccuracies in both directions, though there is less evidence of over-registration. Whilst there have been surveys of adults asking about previous experiences of child abuse, we know of no similar surveys about unwanted or damaging child protection intervention they experienced.
H. Ward, L. Holmes, J. Soper. Costs and consequences of placing children in care. Jessica Kingsley 2008)
NICE RESPONSE.
Thank you for comment. While there may be inaccuracies, we have cited national statistics. It is not within the remit of this guideline to explore the quality of the child protection system. For information, we have updated this section with figures from 2008.
Section 3.1. p.20
We welcome the emphasis on professionals recording "exactly what they see and hear" rather than interpretation of it.
NICE RESPONSE.
Thank you. In the light of other comments, this has been amended to "record on the child or young person's clinical record exactly what is observed and heard from whom and when."
Section 3.1. p.32
The guidance has been developed "in order to help healthcare professionals overcome some of the obstacles", which include (line 10) the discomfort of disbelieving or wrongly suspecting parents (line 15), the uncertainty about when to mention suspicion and what to say to parents and what to write in the file and (line 17) losing control over the child protection process and doubts about the benefits thereof. This last point is not surprising, since there is virtually no evidence-base for benefit in many current child protection procedures. There is, for example, evidence of damaging style of practice in social workers who used a confrontational and aggressive approach "so consistently observed that it is likely to be a systemic issue"1, multiple adverse outcomes from a large randomised controlled trial of over 5,000 families allocated to standard or an alternative supportive social work response (after children at immediate and serious risk were excluded) with long-term follow up, in Minnesota.2,3 Even allowing for transatlantic differences in welfare provision, it has widespread implications for the UK.
The fact that these intellectual and unethical discomforts exist in the minds of many clinicians is a credit to them. These are crucial issues of importance to consumers also, yet the guide ploughs on with the assumption that "firmer" evidence and formal guidelines on diagnosis will enable the professional to ride roughshod over his or her doubts. The mere mention of these practical and ethical difficulties does not abolish them.
D. Forrester et al. How do child and family social workers talk to parents about child welfare issues? Child Abuse Review 17(1): 233-5 2008
Loman L.A. & Siegal G.,S. Minnedota Alternative Response Evaluation Final Report Executive Summary. Institute of Applied Research, St. Louis Missouri 2004
Institute of Applied Research, St Louis Missouri. Extended Follow-up study of Minnesota's Family Assessment Response Final Report. Conducted for the Minnesota Department of Human Services 2006.
NICE RESPONSE.
Thank you for your comment.
Section 3.1. p.32
Line 34 mentions the risk factor of "previous unexplained death of a child within a family." We deal with many parents who have unexplained miscarriages, stillbirths and neonatal deaths. This may affect the behaviour of parents with existing or later children in different ways, and the behaviour of siblings, as well as their interaction with services, and we have seen many such families. The emotional fall-out from this loss - its duration and severity and different methods of coping by different family members - is frequently under-estimated. Unresolved questions about quality of care of the dead child occasionally leave parents rather hostile to, and questioning of care-givers. It can also make them anxious (we do not label it over-anxious) if a child is sick. They may take children to the doctor more often or insist on more investigation. In our long experience this used to be dealt with sympathetically, particularly by G.P.s. Nowadays it can lead to unfounded suspicion of F.I.I. or allegations that they do not cooperate well with professionals. To emphasise previous bereavement as a source of suspicion can create further damage, unless it is accompanied by further explanatory text. This applies to many other aspects of this guideline.
NICE RESPONSE.
Thank you for raising this. We have removed this phrase at your suggestion.
Section 4 p.21 Line 26.
Bruising in babies who are not independently mobile. We have had a number of complaints from indignant parents in this situation, where a bruise in a young baby is considered not a cause to suspect abuse but virtual proof of abuse. Often they believe the bruise was caused by a projection on baby equipment and demonstrate how this may be so. Others say they are totally mystified. This seems to be one of the signs which professionals often jump on with certainty, despite other signs of loved and well cared-for children. There is a need to explore what innocent causes there may be for immobile infants having bruises.
NICE RESPONSE.
Thank you. This document offers guidance about when to suspect maltreatment, not how to diagnose or confirm maltreatment. The Guideline Development Group believes that its recommendations encourage health professionals to rule out innocent causes of bruises before suspecting maltreatment.
Section 2.1. p.21.
Bites "Abuse is suspected when there is report or appearance of a bite mark caused by an adult." If the bite comes from an under-16 year old, is abuse no longer to be suspected? We seem to be receiving an increasing number of reports from parents of violence of many kinds, emotional abuse and sexual interference, from other children - usually while at school (And this is causing them to keep children at home). This violence equally is maltreatment and it should be recognized and acknowledged as such, although the remedies may be different. The aim surely is to protect children, (both abusers and abused), not merely to find a parent or carer to blame.
NICE RESPONSE:
The point is well taken that an abuser does not have to be an adult in all circumstances. The Guideline Development Group has decided to replace "suspected to be caused by an adult" with "that is thought unlikely to have been caused by a young child". We hope this change is helpful.
Section 2.1. p.22
Re Fractures (lines 28-31) and Intra Cranial Injuries. We have noticed that accounts of being falsely accused often come from parents of premature babies of infants with a history of difficult labour/instrumental deliveries. Many have been in SCBUs. A number of parents have suggested that these could be problems arising from birth or neonatal treatment. Official assumption is often that children have been harmed by parents because of lack of bonding caused by separation in SCBU, or provocation caused by caring for a difficult baby. But parents raise the question of birth or neonatal injury in hospital. We have been unable to trace any brain imaging studies of a population of such children on discharge. We suggest this should be added to the list of future research projects.
The literature describes both fractures and brain damage inflicted by physiotherapy on premature babies and the cause was at first withheld from publication. The history was summarised in our Journal1,2,3. "Had the fractures of this unintentionally battered neonate first been diagnosed following hospital discharge, he might have been labelled as a case of parental child abuse"4. And although such cases are uncommon, we do receive accounts from parents who saw their baby dropped by staff, or were told by other parents or staff that it had happened. These incidents are often not recorded on case notes. Presumably it also happens in cases where parents did not know of it.
Robinson J. Shaken baby syndrome caused by hospital care. AIMS Journal Spring 2003 vol 15 no 1.
Harding J. et al. Chest physiotherapy may be associated with brain damage in extremely premature infants. J. Pediatr. 1997. 132 440-4.
Cull H. et al. Inquiry into the provision of chest physiotherapy treatment provided bo pre-term babies at National Women's Hospital between April 1993 and December 1994. Ministry of Health Wellington N.Z. 1999.
Purohit D., et al. Multiple rib fractures due to physiotherapy in a neonate with hyaline membrane disease. Am J. Dis. Child 1975 120:1103-4
NICE RESPONSE.
Thank you for the comment. There are research studies on newborns that routinely look at MRI brain scans, namely those from the Sheffield group. The characteristics of fractures in preterm babies represent an area that needs to be explored. This is a related field and is broadly addressed in research recommendations of a prospective study of fracture patterns in preschool children.
Section 2.1 p.23
Line 12 "Delay in presentation. Increasingly we are finding that promptness in seeking advice, and willingness to do so, is affected by parents' experiences of how they were treated in the past. Even the most short-lived episode of suspicion or investigation experienced by them, their relatives, neighbours or friends, may have profound effects on future interactions. Delay can be caused by fear, and should be treated with a sympathetic approach to mend fences rather than more suspicion. Increasingly authoritarian and suspicious approaches by doctors, midwives, health visitors, etc. are driving parents into the hands of alternative practitioners. And, of course, any previous suspicion of MSBP or FII, even if disproved, makes parents afraid to consult at all - for themselves as well as their children, and we have seen many such cases.
NICE RESPONSE:
Thank you for your comment.
Section 2.1. p.23
Line 13 "Absent, implausible, inadequate or inconsistent explanation.,"
There can be many innocent reasons - for example if parents' accounts differ from records, the records are not invariably correct. The fear we have mentioned above, is also leading parents to edit their accounts to professionals for fear of being misunderstood, as they frequently tell us. This seems to be affecting even parents who have had no previous experience of suspicions or accusations. After all, we receive so many accounts from parents of "inadequate and inconsistent" explanations from professionals, there should be some understanding that the fallibility of communication in clinics might be given more understanding.
NICE RESPONSE.
Thank you for your comment. An adequate explanation constitutes a suitable explanation and therefore no reason to suspect maltreatment.
Section 2.1. p.24.
Line 31-33 Neglect. "Healthcare professionals should consider neglect if parents persistently fail to engage with current preventive child health promotion programmes, for example health and development reviews, screening and considering advice about immunisation, feeding, diet, exercise and injury prevention.
NICE RESPONSE:
Thank you for your comments. The Guideline Development Group have carefully reconsidered this issue and their consideration can be found in the full version of the guideline. For information this recommendation has been changed to "Consider neglect if parents or carers persistently fail to engage with relevant child health promotion programmes which include immunisation, health and development reviews, screening."
Please note that these indications are supported by a process - as outlined in the section on how to use this guidance. The guideline aims to support the NHS, parents and carers in the recognition of signs and symptoms that may lead to identification of child maltreatment.
D. refers to situations that are outside the scope of this guidance.
We profoundly object to this catch-all which will undoubtedly by used - as such concepts are already being used - to control anyone whose style of parenting is different and who does not accept the advice and policies outlined by their local health visitor GP etc. but is nevertheless and affectionate, caring and thoughtful parent. Indeed, it is those who are willing to challenge orthodoxy who are most being submitted to threats and control. We have seen years of this with women who wanted home births and we still do. We are increasingly seeing threats of child protection being used against parents who merely question treatment or recommendations - and it is turning them away from orthodox care.
Immunisation is included despite the fact that the evidence quoted for any association with neglect (only one study - M. Stockwell et al - with a biassed sample done in a country with a different public health system and was found inadequate by your own standards for evidence. This is unacceptable.
Parents "failure to engage" can be and often is, caused by service style, location, treatment or authoritarian personnel they do not find acceptable. All 'opting out' should be examined in the context of the NHS trust being a monopoly provider - unlike health services in many countries where users have a choice.
Women are failing to cooperate with screening for postnatal depression because the consequences (referral to social services and temporary or permanent loss of their children) is as greater risk than untreated disease).1
We know older parents who failed to act on confident advice from doctors, midwives and health visitors to place their babies to sleep face down - well-meant advice which killed thousands of babies throughout the developed world. Possibly some of those children survived as a result. We have lost count of the complaints we have had from mothers advised by health visitors and G.P.s to stop breast feeding - but they ignored it and carried on because they believed in the benefits of breastfeeding. Who is to say what current orthodoxies will be changed in the near future?
Section 2.1. p.24
Line 41-42 "Should consider neglect if parents or carers persistently fail to attend follow up outpatient appointments... that are essential to child's health and wellbeing."
Our problem with this is that, once again, it is not set within a context of other possible causes being explored first. Parents, children and professionals may legitimately differ in their assessment of how 'essential' an attendance is and whether it is, in fact, likely to improve wellbeing. Some children tell us this too, and can be emphatic. Lay assessments of quality and outcomes of care are not necessarily always wrong. Failure to listen to concerns about side-effects of medication, or differing views, can put families in the position that they feel their only way to prevent browbeating or confrontation is avoidance of contact. We have much experience of this from antenatal care.
Reasons for non-attendance are complex, and there are a number of studies on causes of which many professionals seem unaware, e.g. Birmingham found parents usually made conscious decisions balancing advantages and disadvantages of follow-up appointments; some said the reasons had not been made clear, or the children had now improved.1 Failure to attend follow-up child psychiatry appointments "may be due to child or parent dissatisfaction with the first appointment" and children themselves refusing.2
In our experience appointments may be missed because of transport problems and costs, especially in poorer families. The service or personnel may not be helpful and can even be seen as toxic (something the clinical notes are unlikely to record). There may be illness in the carer. These problems should always be explored before labels like "neglect" are considered. In the Confidential Enquiries into Maternal Deaths, Dr. Gwyneth Lewis has pointed out that if people in high-risk groups do not use a service, it is the duty of the service to change to meet their needs, rather than blaming non-attenders.3
Our concern is heightened by seeing non-attendance used not as a means of identifying genuine neglect but as a weapon against families who are disapproved of for other reasons (often for having made an earlier complaint about quality of care). A social work lecturer describes how his students "spend their days plugging information about failed appointments into a software package developed for a business environment., This amassed information can then be used to establish the pattern of non-compliance necessary to justify heavier interventions."4 We even have cases where this has occurred where parents insist they had never been told of the appointments and we have supporting evidence of deliberate misinformation in one case.
Andrews R. et al. Understanding non-attendance in outpatient paediatric clinics. Arch. Dis. Child 65 (2) 1922-5 1990.
El-Badri S & McArdle P. Attendance at child psychiatric clinics. Psychiatric Bulletin 22 554-6 1998
NICE RESPONSE:
Thank you for your comment. We agree that reasons for non-attendance are indeed complex. The chapter on neglect highlights in the introduction a context in which there appears to be a disregard for the child's needs. Text has been added to support the recommendation to show that the absence of legitimate reasons for non-attendance is an important marker that should not be ignored.
Section No 7 p.26
Emotional, behavioural and interpersonal social functioning. Lines 26-29. Please note the symptoms here described are also related to us by parents in both themselves and their children, as a result of child protection interventions.
We have seen a number of cases where problems which become apparent in foster care are automatically attributed to previous treatment by birth parents, whereas they arise as a result of maltreatment in the new location. A recent example in our files, was attempted rape by the older son of a foster carer. Previous complaints by the mother and the child had been disbelieved and only a serious suicide attempt by the child established the truth. May we plead for an open mind on the sources of maltreatment of children in care. In our experience there is a tendency to deny that there is a problem at all or to record it as of lesser severity, if it occurs in a local authority placement. In our experience problems are covered up, downplayed, or detected later than they should be.
NICE RESPONSE.
Thank you for your comments., While it is recognised that this may be the case for children well into the investigation process, this document is aimed at front-line health care professionals who may be seeing the child for the first time in some cases. We also hope that should a health professional who has seen any child regularly note any obvious change in the child's behaviour or demeanour they they will also refer to this guidance. This guideline is a tool for health professionals to assist in their choices once observations have been made. It is hoped that the guideline will be used before any investigation is underway.
AIMS COMMENT:
Oh dear. Once in care, children are not automatically immune from maltreatment, but we find their voices are silenced by social workers and they are powerless. This NICE response seems to discourage doctors and others from looking with a fresh eye.
Section 7 p. 26. Lines 36-39
We are delighted that this section mentions the need to explore ADHD, autism spectrum disorders and bipolar disorder before considering child maltreatment if a child shows repeated, extreme or emotional proportion which they are not expected.
This is one of the too few sections where the need to exclude alternative diagnoses is given a mention - albeit brief. May we point out that the symptoms listed do not cover the range of behaviours which may be seen in such children, and there is widespread ignorance of these in health visitors, doctors, teachers, social workers, so diagnosis may be made much later than it should be. If only the same educational input for all professions had been applied for training in picking up signs of these increasingly common and serious problems as has been used for MSBP and FII (an uncommon problem), many parents and children would have benefited. ADHD, autism etc. should be mentioned in other sections of the Guideline also (eg absence from school)
NICE RESPONSE:
Thank you for these comments but the issue of training child care professionals in the identification of developmental disorders lies outside the remit of the Guideline Development Group's responsibility and the GDG strived throughout to emphasise the need to consider alternative explanations for children's emotional and behavioural presentation.
Section 2.1. p.25 Lines 1-3.
"Healthcare professionals should suspect (our italics) neglect if they encounter... living space that is inappropriate or unsafe for the child's developmental stage.". We object most strongly. This might well be appropriate if we were talking of neglect by the local authority, the government, or private landlord. It is obvious that many families have to live in cramped and poor housing, and we have never encountered a parent who did not want something better. We cannot understand why quality of housing should cause suspicion. This is largely associated with poverty and shortage of public housing and there is no evidence that this is associated with neglect.
NICE RESPONSE:
Thank you for your comment. We have amended this recommendation to show that factors should be within the parents' control to exclude the issue you raise. We have also added some contextual text to this recommendation.
Section 2.1. p.25 Lines 5-6
Over- and under-nutrition. "Healthcare professionals should consider child maltreatment in any (our emphasis) with abnormal growth patterns for which there is no medical cause." We profoundly object to this statement and believe it can only be damaging to co-operation with public health and educational measures. Whilst many possible medical causes and social causes of under-nutrition have been fairly well researched and understood, the move to include obesity as a catch-all fills us with concern. We have seen cases (and have actually observed interactions with professionals) in cases where childhood obesity was included as a neglect issue by social services and the effects were damaging to the children and families concerned. We have also seen totally wrong and harmful advice on changing nutrition from social workers and child contact centres.
The RCPCH issues a press release in June 2007 saying that childhood obesity was primarily a public health problem, not a child protection issue, but there may be a few families where there might be discussions with social services. Once neglect is on the agenda, parents perceive changes in professionals' manner towards them, and we have seen many times how this prevents constructive care. The self-esteem of these children is often already low, and threats of removal or court proceedings - which is their fault for drinking fizzy drinks or eating crisps - could have long term harmful impact.
We know obesity is a health problem, but there is as yet too little evidence on effectiveness of interventions to encourage wider inclusion of obesity under a label of neglect.
NICE RESPONSE.
Thank you for your comment. This recommendation has been removed.
General. Interpreting Statistics.
Statistical statements such as "obese children are x times more likely to suffer neglect" are not understood by many who will use the guidelines, e.g. social workers and health visits, including some doctors - and family courts. They do not understand that while neglect may be more common in one group, the vast majority of obese children are not neglected.
NICE RESPONSE:
Thank you for your comment. A Quick Reference Guide that contains a summary of all the recommendations is being produced. This guide will bee written in plain English. Statistical statements are required in the full guideline in order to represent the research that underpins the recommendations.
General. Poverty.
Many of the problems listed are strongly related to social class. Poverty is associated with homelessness, poor housing, prematurity, higher infant and child mortality, SID, dental caries, obesity, lack of private transport, etc. There is too little acknowledgement of this. Not all research on maltreatment and neglect controls adequately for social class, and in practice we find parents being accused of neglect when they have the same problems as most of their neighbours on the estate. The remedies lie outside changes in parenting. In fact we often find cause for respect and congratulation in what many parents have managed to achieve in spite of their circumstances. Surely the aim is to help children to flourish rather than police and control the poor?
NICE RESPONSE:
Thank you for your comment. The indicators of neglect are not indicators of poverty.
General Lack of confidence in services. Although we have made many criticisms, we appreciate that this guideline is trying to help professionals to do a difficult job and we are just as concerned as they are to protect children. But we are very concerned at the increasing number of cases where parents describe their lack of confidence in professionals, their fear of paediatricians or visiting A & E, the unacceptability of health visitors whom they see as 'the health police' etc.
Distinctions between "suspect" and "consider" may involve fine distinctions which mean different things to groups with different professional training, and there is also a wide variety of assessment between professionals. It only takes one professional in the large multi-disciplinary network to behave in a harsh, bossy, authoritarian etc. manner, to taint the whole package in the parents' eyes. The ripples of false-positive or badly-handled diagnoses extend widely.
Parents telephone us and describe injuries or illnesses in their children which they would formerly not have hesitated to take to the doctor or hospital. Now they are afraid to do so. They are also afraid to be open in describing symptoms or histories in their children or themselves.
Many of these parents have had previous brushes with some allegation or suggestion of abuse or neglect of children (sometimes minor). Sometimes they were not openly stated but they could tell by changes in the behaviour of doctors or nurses on the ward what was afoot.
Others quote relatives' or friends' experience. Increasingly there are others with no direct experience but which seem to be part of the general community feeling.
It is for this reason that in the earlier scope we emphasised the need for acknowledgement of what was happening and attention paid to the way in which episodes of suspicion are dealt with.
Anything which affects basic confidence in paediatrics and child health care services is a serious issue.
NICE RESPONSE:
Thank you for your comment. The scope for this guidance does not extend to professionals' behaviour. It aims to support professionals in their decision-making and early recognition of families who need help.
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