Fabricated Illness

Taken from a Cumbrian serious case review
Professional entrapment in FII
Developing a clinical method that increases the likelihood of identifying FII
Keep an open mind
Lack of clarity of medical opinions
Keep questioning your assumptions
Set up and test hypotheses
Be familiar with the range of behaviours that perpetrators of FII exhibit – know how to map read
Communicate clearly
Barriers to the identification of FII36
Warning signs of fabricated or induced illness
The Template – a summary
The Template – explained

Taken from a Cumbrian serious case review

In most cases of physical abuse the child presents with a clear-cut incident, for example, a fractured arm or bruises. These are easily identifiable events which require an explanation. Apart from severe induced illness, the illness picture develops insidiously in fabricated or induced illness (FII), it is a process not an event. It is often fragments of information that begin to suggest the possibility of abuse. This has been noted before: ‘We were struck throughout our enquiry by the way in which fragments of medical evidence, which, if assembled, would have pointed to Nurse Allitt as the malevolent cause of the unexpected collapses of children, lay neglected or were missed altogether. Taken in isolation, these fragments of medical evidence were not all very significant nor was failure to recognise them very culpable. But collectively they would have amounted to an unmistakable portrait of malevolence. The principal failure of those concerned was in not collecting those pieces of evidence.’ We echo these comments and emphasise that these fragments have to be collected from many different sources and will be balanced by professionals who support the parents and provide much apparently compelling evidence that these are very noble parents struggling with a major burden.

Professional entrapment in FII

Schreier and Libow provide a detailed explanation as to how intelligent, concerned professionals have been persuaded to investigate and treat these children, and this has usefully been summarised by Hobbs et al. Factors involved include:

  • Skilful manipulation by the parent which creates an ‘unsolvable’ problem.
  • Parent may have wide medical knowledge.
  • Parent may seem to be more like an appreciative colleague and an ‘ideal’ parent.

These factors drive the doctors to consider more intensive investigations, cleverer tests and more obscure diagnoses. All of this goes along with the parent’s criticism of other professionals ‘ setting them off against each other. If professionals don’t examine this criticism they can quickly find themselves agreeing with the parent and in conflict with their colleagues.

‘If it were just the issue of the paediatrician’s competency, knowledge, and autonomous decision making, things would be difficult enough. But add the issue of the doctor’s ‘caring’ and the bold and sometimes ‘adulatory support’ that these parents often express, and a situation is produced in which the question of his caring is now tied in with his medical/clinical performance. Now, when things are not going well clinically, the doctor is left vulnerable to the self-accusation of not caring enough and feeling he needs to try harder. And this step seals the ‘trap’.

It takes courage to confront this situation. A further challenge is the almost inevitable fact that, in the present climate in the NHS, the doctor will be complained against. Not only is this a further barrier to considering FII, it is time consuming. This is a very major and urgent problem.

Developing a clinical method that increases the likelihood of identifying FII

There are five crucial over-arching messages:

  • Keep an open mind.
  • Keep questioning your assumptions.
  • Be familiar with the range of behaviours that perpetrators of FII exhibit.
  • Communicate, clearly.
  • Be familiar with barriers to identification of FII.

Keep an open mind

The existence of FII questions our basic beliefs about the parents and parent/professional relationships.

The warning signs and risk factors for FII all have alternative explanations. They are probably sensitive but not specific indicators of FII. The majority of cases with these warning signs and risk factors will not be cases of FII.

Many of the risk factors will be very common in socially and/or economically deprived families, and such families are known to make increased demands on health services and have increased admissions to hospital.

Many families with a child with a severe chronic illness (particularly when there are limited social or economic resources) will place very heavy demands on professionals. Many devoted professionals have enormous empathy with these families and do everything they can to mitigate the burden for these families. In many respects the professionals with the most empathy are the ones most vulnerable to being enmeshed in FII.

Lack of clarity of medical opinions.

Imbalance in power between:

  • Tertiary hospitals and district hospitals
  • District hospitals and primary care
  • Doctors and other professionals
  • Other professionals and health professionals
  • Junior and senior professionals
  • Non-professionals and professionals

Keep questioning your assumptions.

Use the template of warning signs, at the end of this policy

Set up and test hypotheses

The consequence of failing to keep an open mind is that you never question if your assumptions are correct.

In any unresolved clinical problem it is routine to review the story for clues to so far undiagnosed naturally occurring illness. It is essential that such reviews include the consideration of a wider variety of hypotheses including the possibility that there may have been distortion in the account the professional has been given.

Failure to take even the most rudimentary steps to corroborate the story given by the parents is the commonest reason that FII is not identified.

Professionals should automatically include consideration of FII in their hypotheses to examine unresolved clinical problems. This requires as a minimum:

  • A full history of the child, siblings and parents, including health facilities they have used.
  • Seeking corroboration of the reported symptoms from the other sources (the child, the family, the school, the GP, other professionals etc.)
  • Corroborating information about the child’s previous illness.
  • Review of this information to see if there are any warning signs of FII.

This could be seen as analogous to the skeletal survey in physical abuse. It will be frequently negative but this is the cost of identifying FII.

It is critical before the introduction of invasive treatments, particularly via portals of entry to the body, to question assumptions about the child being treated. 50% of reported cases of illness induction use routes which have been produced by doctors. With the explosion in gastrostomies, home antibiotic treatment, bladder catheterisation, etc. inevitably some parents will use these routes to abuse their children. The checklist for FII we have suggested above should be applied in these cases, even if there seems to be a bona fide naturally occurring illness, before the treatment is commenced. The introduction of the use of rectal diazepam and naso-gastric tube feeding in this child were two of the most critical events.

Be familiar with the range of behaviours that perpetrators of FII exhibit – know how to map read.

All children suffer naturally occurring illnesses. Additionally, induced illness results in real illness in the child. Thus, independent observations of definite clinical signs does not exclude FII. For example, if occasional tonic/clonic convulsions were observed this would still be at variance with a parental report that many such convulsions were occurring every day.

Communicate clearly

Hobbs et al conclude their work illustrating professional entrapment with the question: Do the various doctors talk to each other?

Sometimes the problem is one of vocabulary. There is no accepted vocabulary for describing and communicating concerns when the concerns are only beginning to arise in the professional’s analysis of a case (dawning of private concerns). ‘Excessive consultation behaviour’ or ‘parental persistence’ as suggested by Waring are possibly useful terms. The latter has a slightly pejorative tone to it but Waring makes it clear that there are a range of reasons for parental persistence, most of which are benign.

The recommendation that all correspondence about a child should be copied to the parents (Kennedy Report) may cause problems in communication in the early stages of concern about FII. It is essential that communication is factually correct.

It is usual for perpetrators to seek further opinions, particularly if any doctor confronts the issue directly or indirectly. Too often the medical ‘facts’ of the case are communicated but not the concerns about their aetiology and rarely are the latter set out as clearly.

Communication within agencies or institutions is also essential. Other specialists involved must be fully appraised of the concerns as this might have significant implications for their decisions (particularly the placement of the naso-gastric tube).

Delays in review of patients or in organising investigations can cause major problems in communication.

Communication is much more effective if pathways agreed in child protection procedures are followed.

The time taken for outpatient appointments to occur can impede communication.

Recruitment of more and more agencies in different areas can cause confusion.

Transfer of patient to another consultant can lead to lack of clarity about the lead consultant.

Be familiar with barriers to identification of FII.

Finally there are well described barriers to the identification of FII. These are set out in the following table.

Barriers to the identification of FII36

Lack of awareness of the range of behaviours.

Concentration on ‘making a diagnosis’ rather than appraising all presentations and the whole of the child’s health in a broad and holistic fashion.

Minor abnormalities on investigation are unquestioningly accepted as explaining a substantial level of FII presentations.

There is a tendency to consider this form of abuse as a ‘diagnosis’ of exclusion or last resort.

Failure to take even the most rudimentary steps to corroborate the story given by the parents.

Many of the children who suffer FII also have naturally occurring illnesses.

There is a professional (and legal) risk in deciding to stop investigations.

This form of abuse questions our beliefs about parenting and the doctor/patient relationship and is, therefore, emotionally challenging. It is only human to try to avoid thinking about such difficult ideas, especially with parents with whom one has already apparently developed a trusting professional relationship.

Warning signs of fabricated or induced illness

Introduction

We highly recommend the use of the template below to practitioners who suspect that FII is being perpetrated. In fact the ‘triggering’ of a professional to consider the use of the template is the first step in realising that things are not quite right and probably the biggest hurdle to overcome in terms of addressing the potential occurrence of FII.

Utilising the template will enable professionals to analyse any suspicions by categorising events and other available facts. In this respect the template should be complemented by the preparation of a chronology which is also an invaluable tool in assisting the identification of FII or any suspected case of child abuse. Events need to be drawn together from all the available information known to a professional or agencies and will result in a process leading to a result which may be:

  • Concerns ruled out.
  • Concerns not substantiated.
  • Continuing uncertainty. Concerns remain about significant harm. There could be many explanations for the child’s symptoms including that they are being fabricated. It may be that the child’s health will require continued monitoring to see how it progresses.
  • Concerns substantiated, but the child is not judged to be at continuing risk of significant harm.
  • Concerns substantiated and child judged to be at continuing risk of significant harm.

Also, a word of warning: just because a suspected case of FII encompasses all the categories in the template does not necessarily mean that the child is being abused. The categories are indicators and there may be justifiable reasons for an event occurring which can be categorised within the template.

It is useful to consider the following points when utilising the template or preparing a chronology:
Ensure that people describe precisely what they have observed rather than using unfamiliar terminology.

Clarify any concerns about medical information (treatments, expected findings, prognosis, etc) with an appropriate doctor.

Do not try to understand the motivation of the carer; concentrate and focus on the possible harm to the child.

The template will not provide solutions to any identification or planned process of dealing with FII; that is down to the professionals involved in the care of the child, but it gives an indication of whether FII is a possibility.

The Template – a summary

Note: the order of numbering does not indicate the relative importance of each category.

Category Warning signs of Fabricated or Induced Illness
1. Reported symptoms and signs found on examination are not explained by any medical condition from which the child may be suffering.
2. Physical examination and results of medical investigations do not explain reported symptoms and signs.
3. There is an inexplicably poor response to prescribed medication and other treatment.
4. New symptoms are reported on resolution of previous ones.
5. Reported symptoms and found signs are not seen to begin in the absence of the carer.
6 The child’s normal, daily life activities are being curtailed beyond that which might be expected for any medical disorder from which the child is known to suffer.
7. Over time the child is repeatedly presented with a range of signs and symptoms.
8. History of unexplained illnesses or deaths or multiple surgery in parents or siblings of the family.
9. Once the perpetrator’s access to the child is restricted, signs and symptoms fade and eventually disappear (similar to category 5, above).
10. Exaggerated catastrophes or fabricated bereavements and other extended family problems are reported.
11. Incongruity between the seriousness of the story and the actions of the parents.
12. Erroneous or misleading information provided by parent.

The terminology is not always easy to understand and so the template is set out again where we also provide some examples of how we interpreted these categories

The Template – explained

Note: ‘Symptoms’ are subjective experiences reported by the carer or the patient. ‘Signs’ are observable events reported by the carer or observed or elicited by professionals. We set out below some examples of behaviour to look out for.

Category Warning signs of Fabricated or Induced Illness
1. Reported symptoms and signs found on examination are not explained by any medical condition from which the child may be suffering. Here the doctor is attempting to put all of the information together to make a diagnosis but the symptoms and signs do not correlate with any recognised disease or where there is a disease known to be present. A very simple example would be a skin rash, which did not correlate with any known skin disease and had, in fact, been produced by the perpetrator. An experienced doctor should be on their guard if something described is outside their previous experience, i.e. the symptoms and signs do not correlate with any recognisable disease or with a disease known to be present.
2. Physical examination and results of medical investigations do not explain reported symptoms and signs. Physical examination and appropriate investigations do not confirm the reported clinical story. For example, it is reported a child turns yellow (has jaundice) but no jaundice is confirmed when the child is examined and a test for jaundice, if appropriate, is negative. A child with frequent convulsions every day, has no abnormalities on a 24-hour videotelemetry (continuous video and EEG recording) even during a so-called ‘convulsion’.
3. There is an inexplicably poor response to prescribed medication and other treatment. The practitioner should be alerted when treatment for the agreed condition does not produce the expected effect. This can result in escalating drugs with no apparent response, using multiple medications to control a routine problem and multiple changes in medication due to either poor response or frequent reports of side effects. On investigation, toxic drug levels commonly occur but may be interspersed with low drug levels suggesting extremely variable administration of medication fluctuating from over- medication to withdrawal of medication.
4. New symptoms are reported on resolution of previous ones. New symptoms often bear no likely relationship to the previous set of symptoms. For example, in a child where the focus has been on diarrhoea and vomiting, when appropriate assessments fail to confirm this, the story changes to one of convulsions. Sometimes this is manifest by the parents transferring consultation behaviour to another child in the family.
5. Reported symptoms and found signs are not seen to begin in the absence of the carer, i.e. the perpetrator is the only witness of the signs and symptoms. For example, reported symptoms and signs are not observed at school or during admission to hospital. This should particularly raise anxiety of FII where the severity and/or frequency of symptoms reported is such that the lack of independent observation is remarkable. Caution should be exercised when accepting statements from non-medically qualified people that symptoms have been observed. In the case under review there was evidence that the school described episodes as ‘fits’ because they were told that was the appropriate description of the behaviour they were seeing.
6. The child’s normal, daily life activities are being curtailed beyond that which might be expected for any medical disorder from which the child is known to suffer. The carer limits the child’s activities to an unreasonable degree and often either without knowledge of medical professionals or against their advice. For example, confining a child to a wheelchair when there is no reason for this, insisting on restrictions of physical activity when not necessary, adherence to extremely strict diets when there is no medical reason for this, restricting child’s school attendance.
7. Over time the child is repeatedly presented with a range of signs and symptoms. At its most extreme this has been referred to as ‘doctor shopping’. The extent and extraordinary nature of the additional consultations is orders of magnitude greater than any concerned parent would explore. Often consultations about the same or different problems are concealed in different medical facilities. Thus the patient might be being investigated in one hospital with one set of problems and the parent will initiate assessments elsewhere for a completely different set of problems (or even the same) without informing these various medical professionals about the other consultations.
8. History of unexplained illnesses or deaths or multiple surgery in parents or siblings of the family. The emphasis here is on the unexplained. Illness and deaths in parents or siblings can frequently be a clue to further investigation and hence a diagnosis in naturally occurring illness. In FII abuse, perpetrators frequently have had multiple unexplained medical problems themselves, ranging from frequent consultations with the general practitioner through to the extreme of Munchausen syndrome where there are multiple presentations with fabricated or induced illness resulting in multiple (unnecessary) operations. Self-harm, often multiple, and eating disorders are further common features in perpetrators. Additionally, other children either concurrently or sequentially might have been subject to FII abuse and their medical history should also be examined.
9. Once the perpetrator’s access to the child is restricted, signs and symptoms fade and eventually disappear (similar to category 5 above). This is a planned separation of perpetrator and child which it has been agreed will have a high likelihood of proving (or disproving) FII abuse. It can be difficult in practice, and appear heartless, to separate perpetrator and child. The perpetrator frequently insists on remaining at the child’s bedside, is unusually close to the medical team and thrives in a hospital environment.
10. Exaggerated catastrophes or fabricated bereavements and other extended family problems are reported. This is an extension of category 8. On exploring reported illnesses or deaths in other family members (often very dramatic stories) no evidence is found to confirm these stories. They were largely or wholly fictitious.
11. Incongruity between the seriousness of the story and the actions of the parents. Given a concerning story, parents by and large will cooperate with medical efforts to resolve the problem. They will attend outpatients, attend for investigations and bring the child for review urgently when requested. Perpetrators of FII abuse, apparently paradoxically, can be extremely creative at avoiding contacts which would resolve the problem. There is incongruity between their expressed concerns and the actions they take. They repeatedly fail to attend for crucial investigations. They go to hospitals that do not have the background information. They repeatedly produce the flimsiest of excuses for failing to attend for crucial assessments (somebody else’s birthday, thought the hospital was closed, went to outpatients at one o’clock in the morning, etc). We have used a term, ‘piloting care’, for this behaviour.
12. Erroneous or misleading information provided by parent. These perpetrators are adept at spinning a web of misinformation which perpetuates and amplifies the illness story, increases access to interventions in the widest sense (more treatment, more investigations, more restrictions on the child or help, etc). An extreme example of this is spreading the idea that the child is going to die when in fact no-one in the medical profession has ever suggested this. Changing or inconsistent stories should be recognised and challenged.