| MUNCHAUSEN SYNDROME BY PROXY - A MYTHICAL MALADY!. 1. A PAEDIATRIC DIAGNOSIS?. The term Munchausen Syndrome By Proxy [MSBP] was first created in 1977 by a Dr. Roy Meadows of St. James Hospital Leeds, [U.K.] and which he claimed was circumstances in which a caregiver is “fabricating” symptoms of illness in a child and the child does not suffer from any known medical condition. Meadows later claimed the following as the criteria and guidelines for determining MSBP :- 1. Illness in a child that is simulated (faked) or produced by a parent or someone who is in loco parentis; 2. Presentation of the child for medical assessment and care, usually persistently, often resulting in multiple medical procedures; 3. Denial of knowledge by the perpetrator as to the aetiology of the child's illness; and 4. Acute symptoms and signs of the child abate when the child is separated from the perpetrator. The only “symptom” therefore is that the child is not ill. In other cases where it is accepted that the child has symptoms of a medical condition, it is claimed that the caregiver has induced such symptoms. An immediate question can be raised as to whether MSBP has authenticity as a “Syndrome” in medical terms. A syndrome is described as, “the aggregate of symptoms associated with a disease condition”. The principal irrationality of the claim that Munchausen Syndrome By Proxy is a medical `diagnosis’, is therefore that there are no aggregate symptoms associated with the claimed syndrome, there is no disease condition, nor recognised treatment associated with the `diagnosis’, and there is no medical treatment associated with the diagnosis. The major purpose of the `diagnosis’ is to declare that a child is not ill or any suspected illness of the child has been induced by an adult caregiver. It could be strongly argued therefore that MSBP is not in any sense a `syndrome’ in medical terms. The next question to be raised is whether there is any legitimacy to the “Syndrome”. In a letter to the British Medical Journal in 2001, R.G. Wilson a consultant paediatricians admits that the MSBP label was merely based on the “personal experience of (Dr.) Roy Meadow . The `research’ of the subject claimed by Meadows was based only on anecdotal evidence from an extremely small number of cases. These cases have since been subjected to critical analysis and the conclusions which were drawn by Meadows are open to serious challenge. Meadows was not undertaking any approved form of research at the time of his claim and no scientific methodology was used to validate his findings which must therefore be mere conjectures. Not only were Meadow’s original findings of questionable validity, but as far as is known, MSBP has never been subjected to any trial period under clinical conditions and using scientifically based methodology by any national medical body in the United Kingdom prior to its introduction as a medical diagnosis, nor has there been any trial period under clinical and scientific testing conditions to monitor and review its implementation. The medical profession tend to rely on `Peer Review’ as the major, and often the only, form of approval system of new `diagnoses’ but there has been little critical peer review of MSBP. It is quite incredible therefore that the several professions involved in the detection, investigation, and prosecution of child abuse have so readily accepted MSBP as a form of child abuse with no basis in scientific study. A similar situation occurred in Cleveland U.K. in 1987 when another unproven medical theory (the anal dilatation test) was unquestioningly accepted and led to the wrongful accusation of child sexual abuse against the carers of 121 children and the cases of 96 of those children were dismissed by the courts. Other unproven child abuse theories such as Satanic Ritual abuse and Repressed Memory Syndrome have similarly been discredited but not before many children and their families have been subjected to the traumas of child protection investigations and prosecutions. Concerns have been raised within the medical profession regarding the diagnosis of MSBP and principally by Dr. Colin Morley of Addensbrooke Hospital, Cambridge [Archives Diseases in Childhood 1995; 72; 528-538]. Dr. Morley raised numerous concerns regarding the appropriateness of the diagnostic label of MSBP and the specificity of the criteria used in the diagnosis. An Australian research scientist with a doctorate in natural sciences, Vieira Scheibner Ph.D. states in a medical paper in regard to MSBP that, “…..it, (MSBP) became a way for some doctors to camouflage the real observed side-effects of especially measles (M), Measles-Mumps-Rubella (MMR), and Measles-Rubella (MR) vaccinations in the U.K.” Dr. Meadows claims that MSBP is a condition used in regard to children, and therefore it is a Paediatric Diagnosis in which it is alleged that an adult carer causes or fabricates an illness in a child with the objective of obtaining medical attention for themselves. In 1994, Meadows set out his criteria and guidelines for making diagnoses of MSBP. As it is held that where an illness is fabricated this could lead to inappropriate medical treatment for the child, or if an illness is caused by an adult carer, these actions could constitute `significant harm’ to the child, this has implications for child protection agencies. Other terms are also used for MSBP including Meadow’s Syndrome, Polle’s Syndrome, and Munchausen By Proxy. However, in 1994, Dr. Meadows himself declared with considerable concern in regard to MSBP that, “There is a real danger of the term being overused”. Journal of Clinical Forensic Medicine (1994) 1 121-127. The term Munchausen Syndrome By Proxy first came to public attention in 1993 during the trial of Beverly Allitt, a young woman who was on trial for causing the deaths of a number of small children in a day nursery. Although the suggestion of MSBP was advanced at the trial of Beverley Allitt as an explanation for her behaviour, the only official Inquiry conducted by Sir Cecil Clothier into the events which were the subject of the trial, firmly rejected any association between the MSBP `diagnosis’ and the actions of Beverley Allitt in causing the deaths of the children but that she was suffering from a serious mental disorder. Unfortunately the incorrect association of MSBP with Beverly Allitt has remained in the public consciousness, and this has also affected the views and opinions of several health and social work professionals who have failed to properly research the subject before making assumptions regarding the applicability of the diagnostic label. 2. A PSYCHIATRIC DIAGNOSIS!. In the United States of America, Munchausen Syndrome By Proxy has been retitled Factitious Disorder By Proxy by psychiatrists (principally Drs. Herbert Schreier and Marc Feldman) who claim it is a form of psychiatric illness but with the unsurprisingly closely similar `symptoms’ as described by Meadows. The term `Disorder’ is often liberally exchanged with `Illness’ and `Disease’ (with an implication that it is infectious). Some of the proponents of FDBP have taken matters a stage further by claiming that there is a standard `Profile’ of a person with `Munchausen’s’ and such `Profile’ now includes trying to be a `perfect mother’ and similar fairly common maternal behaviours and attitudes. The question has to be raised therefore, which mothers would such a profile exclude!. In October 1995, Dr. Meadows disputed the use of the diagnosis as a psychiatric diagnosis, and in a letter to an American paediatrician states, “……. The most important step in the diagnosis is in ensuring that the child is assessed by a paediatric specialist…… although mothers who perpetrate this form of abuse may have certain characteristics and personalities, one does not identify the abuse by examining the mother.” Dr. Meadows has also stated that no-one “suffers” from MSBP. I.e. it is not a medical disorder of any kind of an adult. However despite Professor Meadows protestations there are known cases in the U.K. where MSBP has been variously `diagnosed’ and attributed as a label by Physiotherapists, Anaesthetists, Neurologists, Psychologists, and even Veterinary Surgeons. Psychiatrists in the United Kingdom do not accept that adult carers in alleged MSBP cases have any form of mental disorder and the diagnosis of Munchausen Syndrome By Proxy does not appear in the Diagnostic and Statistical Manual of Mental Disorders [DSM IV] published by the American Psychiatric Association. 3. A GENERAL DIAGNOSIS OF SEVERAL PROFESSIONS ?. The confused, almost chaotic, situation regarding the diagnosis of MSBP is further added to by some social workers claiming that they can diagnosis Munchausen By Proxy as it is in their view a behaviour disorder and amenable to their interventions in a social work capacity. This variant is termed Munchausen By Proxy, obviously omitting the Syndrome reference because it has medical diagnostic connotations (e.g. Louisa J. Lasher - Child Abuse Professional - U.S.A.) , which such professionals are not qualified to make. The concern regarding the spread of variants of MSBP is expressed in a paper by an American lawyer and a nurse (Goldman and Yorker) who have tried to introduce an umbrella term of Paediatric Condition Falsification as acceptable to the various professionals now engaged in the diagnosis of MSBP but this seems to have had little impact. In America, some mothers have faced criminal charges following accusations of Munchausen Syndrome By Proxy / Factitious Illness By proxy but several of these cases are now being appealed and the evidence of MSBP has been ruled as inadmissible on the grounds that :- It is not generally supported by the specialist medical profession e.g. Dr. C.J. Morley - “Munchausen Syndrome By Proxy be used with caution and preferably abandoned in favour of giving an exact description of what has happened to the child……. diagnostic criteria are very non-specific and can be misinterpreted.” The theory has not been and it is likely, cannot be tested. (Dr. A. Bentovim and P. Davis, both respected U.K. paediatricians, have stated in British Courts that the MSBP diagnosis is merely a theory). Reviews of MSBP research shows that the theory is unreliable and publications are marked by controversy and discord. Peer review has resulted in disagreement and multiple calls for abandoning the diagnosis. The potential rate of error of diagnosis is unknown but MSBP diagnoses have led to many false accusations of child abuse. There are no standards or controls for MSBP. MSBP is not generally accepted within the medical community. See Morley, Mart, et al. In the records of the cases I have studied, there is evidence that the children have suffered various illnesses prior to the MSBP diagnosis but these appear to have been ignored or disregarded by the paediatricians. In some cases, diagnoses have been made by some paediatricians solely on the basis of telephone conversations with the examining paediatricians without personally examining the children, or discussing the proposed diagnosis with the parents, or obtaining a full medical history of the child and other children in the family or examining child care methods within the family. A practice which disregards the diagnostic criteria and guidelines set by Dr. Meadows. The illnesses and other conditions experienced by the children appear to have their sources in :- Congenital Disorders such as Cystic Fibrosis, Brittle Bone Disease. Birth Injuries; 2. Surgical injury; Inappropriate medication and other medical treatments; Allergic reactions; Vaccine Damage; Exposure to toxins in the home or neighbourhood; Infections e.g. Giardia. It is perhaps notable that in many of these circumstances, serious questions could be raised regarding the competence of the examining paediatrician and other medical personnel and therefore whether the MSBP diagnosis is being used to mask incidents of incompetence. In a significant number of cases the diagnosis of MSBP has been made after notice has been given by parents of their intention to bring a law suit for negligence and medical malpractice against the physicians involved or their employing health provider or where parents have threatened to report the physician to national medical bodies with disciplinary powers. NOT A MEDICAL DIAGNOSIS In the latter part of 1999, a letter from a Senior Adviser at the Department of Health in the U.K. states that MSBP is not a medical diagnosis but is simply a category of non-accidental injury to children. RESEARCH The epidemiological research I have examined have used the diagnosis of MSBP as the starting point for the research and none appear to have examined the previous medical histories of the children nor whether the diagnostic criteria and guidelines for making the diagnosis set out by Dr. Meadows have been properly carried out. In my view such research is thereby invalidated. CONCERNS REGARDING THE WELFARE OF CHILDREN The aspect of most concern as a direct result of a `diagnosis’ of Munchausen Syndrome By Proxy, is that some parents who are so labelled avoid seeking medical treatment and their children or for themselves, although they may suffer genuine serious illnesses. There is at least one recorded death of a child in the U.K. where a child was seriously ill but following the labelling of MSBP, no medical treatment was given. The label continues to appear in children’s medical records and parents labelled with MSBP do not feel they will be received seriously by physicians and fear they may even have to endure further child protection enquiries, with the strong possibility that their children may be removed from them. The names of the children remain on Child Protection Registers even if they move to other parts of the U.K., and are also placed in the education records of children, seriously affecting relationships between children and their teachers, Families labelled as MSBP are often ostracised by relatives and friends and they are viewed with extreme suspicion by neighbours, especially those with children because of the common association of the label, although wrongly, with Beverly Allitt. In effect they become social isolates and outcasts, simply because of the medical diagnosis which paediatricians and others are attaching to them and their lives are thereby seriously blighted. They have no recourse to removing the label of MSBP once it has been attached nor of having the Child Protection entry expunged, even if the allegation is proved to be completely unfounded and the registration is cancelled. The medical diagnosis of Munchausen Syndrome By Proxy is therefore per se’ being abusive to children and to their adult carers. CHALLENGING AN MSBP LABEL Where an allegation of MSBP is made, a challenge should be entered and the person making the allegation of MSBP should be required ::- To produce the peer reviewed and published research study using accepted scientific research methodology to establish the existence of MSBP; To produce a definition of MSBP which is universally accepted among the medical and social work communities and where such definition is published;] To produce evidence that they (the MSBP accuser) has received accredited training in the use of the `diagnosis’ of MSBP; To produce factual evidence, not assertion or conjecture, which supports their opinion on which the MSBP label is based. To produce details of the original research methodology and findings in order that a replicated research study can be undertaken. In the area of genetically inherited disorders, a major step forward has been made by a medical research team in Victoria Australia. [Murdoch Children’s Research Centre]. In the past, tests on new-borns have only been for cystic fibrosis, congenital hypothyroidism, and phenylketonuria. Babies suffering from phenylketonuria cannot break down a particular amino acid and this can cause high and toxic levels of a chemical which damages the brain. The Victoria medical team have developed a method of screening for over 30 rare and deadly diseases using a method known as tandem mass spectrometry. The test is inexpensive (A$ .09) and involves only a prick to the baby’s heel to extract a small blood sample. Every child born in Victoria [approx. 65,000 per year] after 1 April 2002 has been tested in this way. One of the most important diseases which the test will detect is MCAD (medium chain acyl CoA dehydrogenase deficiency), which causes the deaths of at least 70 babies each year in the U.K. This is a genetically inherited disorder which causes severe illness which begins with minor febrile illness(fever), and gastro-enteritis. IN A SIGNIFICANT PROPORTION THERE IS A HISTORY OF PREVIOUS SUDDEN UNEXPLAINED DEATH OR ENCEPHALOPATHY IN A SIBLING. This would explain the many cases where more than one child in a family has died. In the U.K. the Health Technology Assessment Programme undertook systematic reviews in the early 1990’s and gave a very high priority to evaluating newborn screening for MCAD. However no funding was made available for this research and those involved were left disillusioned and frustrated. Screening for MCAD is unlikely to be introduced in the foreseeable future as there is a shortage in the U.K. of paediatricians trained in paediatric metabolic judgements about the effectiveness of such screening. Is it little wonder that the U.K. provides such fertile ground for the `Witch-hunters of MSBP” when advances in medicine to detect childhood illnesses are not introduced.?. CONCLUSIONS In conclusion, the use of the `medical diagnosis’ of Munchausen Syndrome By Proxy does not have a validity nor authenticity for use as a suspicion of non-accidental injury of children and where such a label is attached to a child, can be positively harmful in several ways toward the child and his/her family. The label should therefore be wholly disregarded in favour of normal procedures of investigation of non-accidental injury to children where such is a matter of concern. This document may be used in any forum concerned with inquiry into the use of Munchausen Syndrome By Proxy or any of its variants. The author would be prepared to respond to any further enquiry regarding the contents. Charles Pragnell Social Care Management Consultant and Expert Defence Witness - Child Protection Revised : October 2002.. Credentials of the Author. Charles Pragnell is an independent social care management consultant and Expert Defence Witness - Child Protection and has given evidence to Courts in cases in England, Scotland, and New Zealand. Charles has almost forty years of experience in working directly with children and young people as a social worker and as a senior manager of social services. In the last eight years, he has undertaken research for the National Children’s Bureau and several local authority Social Services and Education Departments and for Health Authorities. He has also made presentations at national and international conferences on child care issues (including child protection) and social policy issues, and has provided occasional lectures at Universities. For over eleven years Charles was an External Examiner to social work qualifying courses at the Universities of Sunderland, Central Lancashire, and the John Moore University in Liverpool. He has had numerous articles on child care and social policy published in journals in the U.K. and South Africa. Charles is a member and a Director of the U.K. Institute of Child Care and Social Education. |