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STIGMA - A Wrong Diagnosis of Munchausen Syndrome By Proxy Foreword: Recently, the British Medical Journal presented a document regarding child protection. We provide a alternative and more realistic view. This document was written by a wrongly diagnosed mother. It shows us the other side of the coin and provides a potential solution to future improvements in the system. I dedicate this article to Debbie Storey, a very dear friend who unfortunately lost her life because of the stigma of wrong diagnoses of MSBP - A Story of Mis-understanding What is MSBP Index
Part 1 : STIGMA - A Wrong Diagnosis of Munchausen Syndrome By Proxy Munchausen Syndrome by Proxy or MSBP is a diagnosis given to a mother or care giver to describe aspects of their behaviour. This behaviour usually includes subjecting [what appears to be] a previously healthy child to unnecessary and often painful tests or medical interventions i.e. scans, x-rays and even surgical procedures to gain attention from the medical profession. Many theories exist as to why a woman may fabricate illness in her child. Common to most theories is a traumatic loss earlier in the mother's life; such a loss may be represented by maternal rejection and the lack of love and attention as an infant. It may also be representative of the "loss of a parent, loss of a parent's love through neglect or abusive treatment, or loss of self through childhood illness or traumatic disillusionment" (Bach, 1991). The problem appears to be that many professionals describe MSBP as different things. Some have said it is a mental illness and some say it doesn't exist. There are debates all over the world on the subject. Can it be called MSBP? .Is there such a thing? Munchausen by Proxy is after all just a term referring to a list of symptoms named after a fictitious storybook character Baron Munchausen, who enjoyed a series of fanciful adventures. This, I feel makes a mockery of the name itself. It's rather like having a syndrome called 'Goldilocks' syndrome because all sufferers are golden haired girls who like porridge and then expecting the whole concept to be taken seriously. So the nation is divided. On the one hand we have Dr Marc Feldman on his site describing this behaviour as "They deliberately mislead others into thinking they (or their children) have serious medical or psychological problems, often resulting in extraordinary numbers of medication trials, diagnostic tests, hospitalizations, and even surgery ... that they know are not really needed. In short, factitious disorder, Munchausen syndrome, malingering, and Munchausen by proxy involve illness deception, or "disease forgery."
In variations of the root problem, some seek the HERO or VICTIM role, rather than the SICK role. In Marc Feldman's article "Parenthood Betrayed, The Dilemma of Munchausen by Proxy" he explains that MSBP mothers need to feel "special" and "that virtually all have personality disorders". Unfortunately however the professional world is divided on this and now in fact Marc Feldman is only one of a few specialists who now describe MSBP as a personality disorder. Here in an article written by Ibrahim Abdulhamid MD entitled Munchausen by Proxy. Like Dr Feldman he also states that "The perpetrator rarely has a severe mental illness e.g. schizophrenia although several reports indicate 1 or more personality disorders is common". This is complicated to understand because there seems to be a contradiction in terms. To many lay people, a personality disorder is equivalent to a severe mental illness. However a personality disorder is not classed by psychiatrists as a serious mental disorder. As I said, the professional world is divided on this and most say it is not a personality disorder. Here, Earl Howe says he feels that professionals are now replacing MSBP with a diagnoses of Personality disorder to assist arrest. 'Earl Howe said he feels there is a sinister development occurring in the UK, with MSBP being confined to the "dust-bin" and doctors replacing it with the term "personality disorder"."This has the same result as MSBP; it is a catch-all term to accuse mothers." Sarah Harman agrees with Earl Howe that MSBP o rfactitious illness by proxy will be used under another name. Earl Howe said it would be a development he would "watch closely"'. In his article Ibrahim Abdulhamid MD describes also a 'profile', saying, "Perpetrators are frequently described as caring, attentive, and devoted individuals. However, not all perpetrators fit this impostor parent profile. Some can be hostile, emotionally labile, and obviously dishonest. Although they have no obvious psychopathology, perpetrators can be deceiving and manipulative. Their ability to convince others should not be underestimated. Their abuse is premeditated, calculated, and unprovoked. The mother may have previous health care knowledge or training, and she is often fascinated with the medical field. In 1 study, 80% of the documented perpetrators, all mothers, worked in health care or child-care facilities. She aspires to establish close relationships with medical staff and frequently becomes a source of support for staff members or the families of other patients." I have a problem with this statement. There are many thousands of women working within health care or within the caring professions, many of them are also mothers. Does this therefore mean that if these health care professionals then go on to have a sick child with a "difficult to diagnose illness", will this automatically put them in the category of a "possible" candidate for Munchausen by Proxy type abuse because they fit the "profile"? Helen Hayward-Brown who also disagrees with the "profile" and says in an article Justice out of Balance "It is a nightmare waiting on the step of every sick child". She carries on to say "ordinary mothers and fathers are being accused of child abuse because their children have an illness that some pediatricians cannot diagnose, or the parents strongly question the doctors over the child's treatment". She explains how parents are often trapped. She uses the example that being an over protective parent is part of the MSBP profile but so is being a negligent parent. Earl Howe has also been extremely worried by a MSBP profile being used in Oct 2001 he said this in The House of Lords "The danger of such a broad spectrum of behaviour being packaged into a single portmanteau term, MSBP, is that in the hands of those who are not sufficiently trained or experienced to know better, it is a label that is all too easily applied without due care. This is all the more true when one considers the so-called profile of characteristics that are said to mark out a person suffering from MSBP. These characteristics include such things as privation during childhood, repeated bereavement, miscarriage, divorce and past health problems. An over-intense relationship with the child and a desire to be the perfect parent are other supposed markers. Regardless of the fact that there are very many perfectly innocent, sane people around who might have such characteristics, the very idea of a tell-tale profile of this kind is an open invitation to apply the MSBP label without properly looking at what may or may not be happening to the child. Put at its simplest, there is all the difference in the world between a Beverley Allitt, whose severe personality disorder led her to murder young children, and a mother who invents reasons why she and her child should visit the doctor. Yet under the all-embracing banner of MSBP, and in the hands of the untrained, the two are treated as being practically indistinguishable. It does not matter whether one calls the condition "MSBP" or "factitious illness by proxy", or by any other name. The point remains the same." Other Professionals tend to agree with this. Michael Nott, Charles Pragnell and Helen Hayward-Brown describe in the article Justice out of Balance that in their opinion MSBP is a "theory" to blame mothers for children with hard to diagnose illnesses many are beginning to agree. Earl Howe, the Opposition spokesman on health, accused a professor of inventing a "theory without science" and refusing to produce any real evidence to prove that Munchausen Syndrome by Proxy actually exists. He says 'It is important to distinguish between the act of harming a child, which can be easily verified (and there are plenty of cases to prove that it happens), and motive, which is much harder to verify and which MSbP (controversially) tries to explain. For example, a caregiver may wish to harm a child simply out of malice (similar to domestic abuse by husband or wife) rather than in order to draw attention and sympathy, in which case, harming the child is merely incidental to the main purpose. In the former case, induced illness is likely to be a means of avoiding detection of domestic abuse (a more elaborate form of the excuse that the victim has "fallen down the stairs").' Lisa Blakemore-Brown's Complaint "Since the introduction of the Clark guidelines, the warped MSBP thinking has performed much as one would expect. It has snaked right through the system. It has encouraged workers and professionals at all levels to think in a medieval manner and misconstrue what is in front of them. It has fostered a misplaced belief that the road to their suspicions is paved with robust science and indisputable medical evidence. It has fostered a misplaced belief that they are protecting children." Some professionals describe what they call some of the "so called" warning signs they watch for when diagnosing a potential sufferer. "The characteristic behavior of the parent is pleasant, cooperative, and supportive of the medical staff; eager to be in the hospital, overly attentive to her child (takes temperature, administers medication, attempts to exclude medical support staff); and able to arouse sympathetic interest and involvement of hospital staff. In addition, the mother may have a nursing or medical background, have her own history of Munchausen syndrome, have a history of marital discord, deny deception, lack the usual parental concern, and have suicidal ideation or attempt suicide before or after discovery of the syndrome (Meadow, 1982). The mother may thrive in the medical environment and enjoy the attention and care she receives from the health care staff. She may have a history of frequent use of emergency rooms and ambulances" However, if the parent has a disabled or frequently sick child, it is quite possible that they will be used to their local hospital as they may have been a frequent visitor with their child. If it is a good hospital the parent will feel at ease. If this is so, they may feel comfortable with the staff, even being on first name terms with many, and feel that they are simply being helpful and saving work for the busy staff. To many junior doctors and staff who are unfamiliar with the parent and their situation, this may appear to be very much in line with the above comments although I don't know how a parent can be ""overly attentive to their child" and then to "lack parental concern.". If the mother does have a disabled child, it is a common occurrence that there will be a lack of help and support locally. It is possible that this lack of support will have a detrimental impact on her mental health. She may well become suicidal or be driven to attempt suicide. Here is a story of a couple with a girl who had Asperger's syndrome who could not cope any longer Suicide pair's girl "Heartbroken" The story describes the lengths the parents' of a disabled child resorted to as a result of a total lack of support by the system. Their daughter who had Asbergers syndrome ran up huge debts. The family had no support and no where to turn. So in sheer desperation they decided they could no longer cope and decided to end their lives. Tragically, the mother died but the father did not. In their suicide note it read "There is still no attempt to provide any form of help, therefore we have chosen that the only way out is to end our lives. "...We came to Tenerife on a cheap one-way flight and have been sleeping on the beach for the last three nights while we pondered the situation, but we realise that we will have to end our lives as there is no help whatsoever." This is the sad reality of a life with a disabled child. As for trying to commit suicide after the diagnoses of MSBP, parents are driven to end their lives. They may have sick or very disabled children and have no help no support. This will make them feel isolated and alone. When they think their circumstances cannot get worse, they get blamed for abusing the child that they are so desperate to help. These diagnoses can be made falsely and without justification. Other classic warning signs include separation anxiety in the child and parental over-protectiveness. The child may cling to the mother and not demonstrate age-appropriate behaviour (Crouse, 1992). The child may initially display fear, negativism, and anxiety, and later progress to a passive, helpless state Again much of this can be normal behavior. A hospital is a scary place for a child. There are strange people, it's unfamiliar, then there are needles and tests. Of course the child will be clingy and because they are, the parent will go into overdrive and will seem over protective. What child who is ill or in pain will not feel fear, negativism, and anxiety? Louisa J Lasher an Expert in Munchausen Syndrome by Proxy said in this article entitled "Smothered with Something That Looks Like Love but Isn't" "The main thing these mothers are after," says Louisa J. Lasher, MA, an international expert on the subject, "is the attention that they get from having a child with problems." Commonly, these mothers will receive sympathy from friends and family. Sometimes church groups or community groups praise these mothers for their selfless duty to their sick child. Of course, to keep the praise coming, the lies must continue. Thus, the children suffer". But is it attention seeking? Lisa Blakemore-Brown Psychologist and Expert in Autism thinks not. The 2004 Guardian article Ministers are told child harm theory was flawed read "Between 1996 and 2002 Blakemore-Brown also raised her concerns in a series of letters to, among others, Tony Blair, health secretaries Frank Dobson, Alun Milburn and Health Minister Jacqui Smith. In each case she received a reply observing only that her concern had "been noted". She also wrote to the Psychologist magazine, warning: "I cannot establish a robust scientific base and am aware of a number of cases in which mothers have had children removed on the basis of this diagnosis to discover later that their children had real illnesses or disorders which were missed when the notion of MSBP loomed large." Further information is in the letter published below :- Letter published in Psychologist. Serious caution is required when making a diagnosis of MSBP type abuse. Many of the items described above can also be indications of a normal anxious parent with a sick child or indeed a child with organic, but undiagnosed illness or disability. People are by nature different and no one can fit the "profile" of MSBP perfectly. An ethical diagnosis of MSBP must include a detailed evaluation of the child, an evaluation of the parents and of the family dynamics. Diagnoses based only on a quick review of the child's medical chart can often be misleading and can brand an innocent mother guilty. The profile of msbp shows that in the event a mother is wrongly diagnosed, the stigma would be much like a permanent imprint on their life. This would affect various aspects of their lives. The victim of a false diagnosis may then spend many years in a system clearing her name. Justice Lite The UK's justice system is fraught with difficulties for any victim. The odds are always stacked up against the victim due to failures in legal aid [ as established by the case of Steel and Morris v UK that showed the unavailability of legal aid in defamation cases. Lawyers are so expensive that they are now reserved for the rich. Working class mothers of disabled or sick children have little or no chance in clearing their names. The stress of fighting to clear their name in whatever way they can is often extremely difficult and time consuming on the mother. If the mother is single then she has to weigh up whether she can fit in work and child care around the vast amount of paperwork and research needed to win her case. The stress of litigation and character assassination can cause mental health problems in those with no previous history. Also, it has been confirmed by professionals that parents are unable to sue. Mr Cifford Miller a Lawyer wrote this on the BMJ Rapid Responses The House of Lords' decision reported in your 30 April article "Parents wrongfully accused of child abuse cannot sue doctors" "Consequently, the guardians of the child may bring an action on the child's behalf any time up to its 18th birthday. Alternatively the child will have three years from the 18th birthday to bring a claim for personal injury. If other claims can be sustained then perhaps up to six years beyond the 18th birthday, such as where a prosperous family environment was destroyed and the child left in less advantageous circumstances in consequence." Climbing the Mountain Even with an admission of a wrong diagnosis, deleting this from the files containing the false diagnoses is extremely difficult. Climbing the mountain of justice is extremely hard for a mother without the support of a defense union [as doctors have]. The Information Commission suggests that an individual can make a Section 10 request under the Data Protection Act 1998. Further information can be found here. For anyone who may find this section useful, we list it below :- Section 10 Data Protection Act 1998. 10 Right to prevent processing likely to cause damage or distress (1) Subject to subsection (2), an individual is entitled at any time by notice in writing to a data controller to require the data controller at the end of such period as is reasonable in the circumstances to cease, or not to begin, processing, or processing for a specified purpose or in a specified manner, any personal data in respect of which he is the data subject, on the ground that, for specified reasons (a) the processing of those data or their processing for that purpose or in that manner is causing or is likely to cause substantial damage or substantial distress to him or to another, and (b) that damage or distress is or would be unwarranted It is clear that the health and social services systems have not put in place a method of addressing the serious problems that may be faced by a mother who is misdiagnosed. Faced with this system and profound losses in their lives, mothers will often rely on anyone who offers them a chance, any chance through the system. Sometimes, "any chance" isn't the right chance or the right method of addressing the problems. In distress, it is natural for anyone to lash out at professionals or anyone whom they perceive to be in their way. Doctors and Social workers often seem impervious to the implications of a wrong diagnosis. Coupled with this the system has no way of addressing these issues. By default due to the failures of both the health and social systems to address grievances properly, the targets become the workers within the system itself. While legitimate debate and legal challenge is acceptable, harassment is counterproductive and may have the net result of placing child protection at risk. This is counterproductive for all concerned. Social workers are becoming afraid and are often reluctant to follow up reports of suspected child abuse and doctors are opting not to go into child protection work or ignoring gut feelings of suspected child abuse for fear of being reported to the GMC. Of course, I cannot understand why a criminal can have a conviction which is spent however a mother or care giver who is accused falsely and proven to be innocent cannot get data removed. Countess Mar certainly agrees with this she says "Even when accusations of child abuse against a parent or parents have subsequently been withdrawn, often after prolonged and costly legal action, the stigma of being branded a child abuser by the local authority remains with the parents. Once a social services referral is placed on their Samson database, the details remain for ever, no matter what the outcome of later inquiries. The referral becomes common knowledge in the local community. Those who work with children, either as carers or teachers, are refused employment and those who have been active in the community or in voluntary work find that they are no longer required, especially if children or young people are involved." In other words a wrong accusation of MSBP brings with it stigma and ridicule which is impossible to remove even when proven innocent. In June 2004 following the conviction of Ian Huntley for the murders of Holly Wells and Jessica Chapman, Sir Michael Bichard was asked to lead an Independant Inquiry into Child Protection measures by the Home Secretary Rt Hon David Blunkett MP. This was mainly on record keeping and Information sharing in the Humberside Police and Cambridge constabulary. This was called the Bichard Inquiry. This was due to the fact that Ian Huntley had been known to authorities for a number of years and yet this information had not emerged during the vetting proceedure, allowing Mr Huntley to be employed by a school. In this report certain guidelines were suggested to stop this from happening again. These were A new system for registering those working with children and vulnerable adults 61 The current arrangements could be improved within the existing vetting framework to address concerns about checking identity, checking an applicant's addresses, dealing with incomplete and withdrawn applications and providing access to additional databases (for example, HM Customs and Excise). However, the resulting improved regime would still have overlaps, duplications and inconsistencies and could only offer a snapshot taken when a vetting search was undertaken. 62 I am, therefore, recommending a very different system. I am proposing the introduction of a register of those who wish to work with children or vulnerable adults - perhaps evidenced by a licence or card. The inclusion of an individual on this register would reassure employers that nothing was known by any of the relevant agencies about that individual that would disqualify them from working with children or vulnerable adults. 63 The register would be constantly updated, following the introduction next year of a new system (the PLX) that will indicate when police forces hold intelligence on an individual. The register could be easily accessed - subject to security protection - by any employer, large or small, including parents employing tutors or sports coaches. Such a system would relieve the police The Bichard Inquiry - Introduction and summary 9 of the responsibility of deciding what information should be released to employers and would simplify arrangements for employers. It could - and I think should - incorporate an appeal process for applicants who were refused registration. It would also avoid information about past convictions being released to prospective employers without reference first to the individual concerned. On Saturday 13th September 2008 in the Daily Telegraph an article entitled "False child abuse claims to be kept on file." This article (no link) states that Local Authorities are setting up databases to hold records of accusations made about anyone from teachers and doctors to Scout leaders, priests and private tutors.The accusations will be kept on a persons personal file until they retire so that future employers can see them. This of course is causing an outcry and being raised on several blogs and websites, one of which is the Liberty Scott blog. She says the following when she discussed the article. "Instead local government investigates allegations and unless you can prove your innocence, they remain on a file, able to be searched by employers, for the rest of your life. It appears that the UK public policy response to a horrendous crime is to erode the rights of the innocent - because after all, the safest country is the one under constant surveillance." So it seems once accused you are in a no win situation.So it seems once accused you are in a no win situation. With databases being set up as I write once an accusation has been made it stays for life.
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