RCGP Safeguarding toolkit

Perplexing presentations and fabricated or induced illness (FII)

This is a particularly challenging area of safeguarding and there is often uncertainty about the criteria for suspecting or confirming PP/FII including how to document in medical records. The RCPCH published guidance on this area in 2021: ‘Perplexing Presentations (PP)/ Fabricated or Induced Illness (FII) in Children. RCPCH guidance.’ Whilst written primarily for paediatricians, this guidance is also of direct relevance to GPs and the RCGP were consulted during the development of the guidance.

Summary of RCPCH guidance: Perplexing Presentations (PP)/Fabricated or Induced Illness (FII) in Children, relevant to general practice

Terminology has changed over time with the term ‘Munchausen syndrome by proxy’ no longer being used.

The terminology now used is:

Features of PP and FII

Parent/caregiver motivation and behaviour

• Clinical experience and research indicate that the mother is nearly always involved or is the instigator of FII. Involvement of fathers is variable.
• FII is based on the parent’s underlying need for their child to be recognised and treated as ill or more unwell/more disabled than the child actually is (when the child has a verified disorder, as many of the children do).
• There are two possible, and very different, motivations underpinning the parent’s need: the parent experiencing a gain and the parent’s erroneous beliefs.
  • In the first, the parent experiences a gain (not necessarily material) from the recognition and treatment of their child as unwell. The parent is thus using the child to fulfil their needs, disregarding the effects on the child. There are a number of different gains - some psychosocial such as the sympathetic attention they receive and some material such as financial support for care of the child, improved housing, holidays, assisted mobility and preferential car parking.
  • The second motivation is based on the parent’s erroneous beliefs, extreme concern and anxiety about their child’s health (eg nutrition, allergies, treatments). This can include a mistaken belief that their child needs additional support at school and an Education Health and Care Plan (EHCP). In contrast to typical parental concern, the parent exhibiting such behaviour cannot be reassured by health professionals or negative investigations.

In FII, parents’ needs are primarily fulfilled by the involvement of doctors and other health professionals. The parent’s actions and behaviours are intended to convince health professionals, particularly paediatricians, about the child’s state of health. It is important to note that, as is common in child neglect, the parent is not usually ill-intentioned towards their child per se. Nonetheless, they may cause their child direct harm, unintentionally or in order to have their assertions reinforced and believed.

Parents engage health professionals in the following ways:

• Presenting and erroneously reporting the child’s symptoms, history, results of investigations, medical opinions, interventions and diagnoses. This is the most common form. There may be exaggeration, distortion, misconstruing of innocent phenomena in the child, or invention and deception. In their reports, the parents may not be actually intending to deceive, such as when they hold incorrect beliefs and are over-anxious, to the child’s detriment.
• Parent’s physical actions which nearly always include an element of deception. This is a less common way. Actions range from falsifying documents, through interfering with investigations and specimens such as putting sugar or blood in the child’s urine specimen, interfering with lines and drainage bags, withholding food or medication from the child and, at the extreme end, illness induction in the child. All of these are carried out in order to convince health professionals, especially paediatricians, about the child’s poor state of health or illness.

Support groups and social media provide an important source of support for parents and families where there is childhood illness. Paediatricians and parents should, however, be aware that some support groups also exist for a number of conditions about which there is divided medical opinion. Furthermore, some social media/support groups may post inaccurate information, discuss diagnoses and how to obtain them, which can lead to harm.

While parental mental ill-health is not a prerequisite for FII, if present it may help to explain the motivations and behaviours of some of the parents as well as indicating prognosis for change. Personality disorders are most likely to be found in parents who derive a clear gain from having their child regarded as ill/more ill. Anxiety disorders may lead the parent to have unfounded anxieties about their child’s health, to an extent which is harmful to the child. Rarely a psychotic illness or Autism Spectrum Disorder (ASD) in the parent may underpin fixed beliefs about the child’s ill-health. Some parents have illness anxiety disorder related to themselves, previously called hypochondriasis. Others have a somatic symptom disorder, in which the person genuinely feels pain or other symptoms which are, however, not based on any identified pathology and can be related to unrecognised or unarticulated underlying emotional difficulties and conflicts. In malingering and factitious disorder, there is unacknowledged deception about the reported symptoms and signs. Both these are associated with gain for the person, the former material gain and the latter psychological or other gain.

Doctors’ involvement

Within this challenging field of work, there is evidence that paediatricians and other health professionals play a role in inadvertently contributing to harm to the child. Most of what doctors do in the management of children, including where the presentation is not understood, is regarded as good medical practice. However, in children with unrecognised FII, some of these actions may contribute to iatrogenic harm. In children with FII, iatrogenic harm is caused by the doctor’s need and wish to trust and work with parents. Even in cases where FII might be suspected, there is still a tendency to believe parents, to avoid complaints, and sometimes uncertainty about how to proceed in what are usually complex cases. A child often has an existing medical diagnosis, or had started out with an underlying illness, which will make assessment more difficult. The parent’s accounts may therefore be true, partially true, or mixed with other accounts that are fabricated or misconstrued. This makes it more difficult to explore their credibility. There is no escaping the reality of the impact on the child in these circumstances however. All doctors need therefore to be thorough in appraising parental requests for further opinions and repeat investigations, and parental failures to bring children to appointments. A doctor’s unease, uncertainty or worry may lead to over-medicalisation of the child’s reported symptoms which must be avoided wherever possible.

Harm to the child

Harm to the child can take several forms. The following three aspects need to be considered when assessing potential harm to the child:

Severity also needs to be considered - severity of the parent’s actions and severity of harm to the child. In assessing the severity of the situation, it is important to focus on the harmful effects on the child. Potential harm to siblings also needs to be considered. There have also been reports of FII perpetrators abusing spouses or animals.

Alerting signs to possible FII

Alerting signs are not evidence of FII. However, they are indicators of possible FII (not amounting to likely or actual significant harm) and, if associated with possible harm to the child, they amount to general safeguarding concerns. Alerting signs can be recognised by a wide range of professionals such as health visitors, general practice clinicians, teachers and educational staff, paediatricians or CAMHS professionals.

The essence of alerting signs is the presence of discrepancies between reports, presentations of the child and independent observations of the child, implausible descriptions and unexplained findings or parental behaviours. Alerting signs may be recognised within the child or in the parent’s behaviour. A single alerting sign by itself is unlikely to indicate possible fabrication. It is important to look at the overall picture which includes the number and severity of alerting signs.

• Alerting signs in the child:
  • Reported physical, psychological, or behavioural symptoms and signs not observed independently in their reported context.
  • Unusual results of investigations (e.g. biochemical findings, unusual infective organisms).
  • Inexplicably poor response to prescribed treatment.
  • Some characteristics of the child’s illness may be physiologically impossible e.g. persistent negative fluid balance, large blood loss without drop in haemoglobin.
  • Unexplained impairment of child’s daily life, including school attendance, aids, social isolation.
• Alerting signs in parent behaviour:
  • Parent/s’ insistence on continued investigations instead of focusing on symptom alleviation when reported symptoms and signs not explained by any known medical condition in the child.
  • Parent/s’ insistence on continued investigations instead of focusing on symptom alleviation when results of examination and investigations have already not explained the reported symptoms or signs.
  • Repeated reporting of new symptoms.
  • Repeated presentations to and attendance at medical settings including Emergency Departments.
  • Inappropriately seeking multiple medical opinions.
  • Providing reports by doctors from abroad which are in conflict with UK medical practice.
  • Child repeatedly not brought to some appointments, often due to cancellations.
  • Not able to accept reassurance or recommended management, and insistence on more, clinically unwarranted, investigations, referrals, continuation of, or new treatments (sometimes based on internet searches).
  • Objection to communication between professionals.
  • Frequent vexatious complaints about professionals.
  • Not letting the child be seen on their own.
  • Talking for the child/child repeatedly referring or deferring to the parent.
  • Repeated or unexplained changes of school (including to home schooling), of GP or of paediatrician/health team.
  • Factual discrepancies in statements that the parent makes to professionals or others about their child’s illness.
  • Parents pressing for irreversible or drastic treatment options where the clinical need for this is in doubt or based solely on parental reporting.

Adverse childhood experiences

When working with children and their families where there are perplexing illnesses or concerns about fabricated or induced illness, professionals should explicitly explore whether the child is currently experiencing, or has previously experienced, adverse childhood experiences such as physical, sexual or emotional abuse, neglect, domestic abuse, child sexual or criminal exploitation, bereavement, parental/caregiver alcohol or drug misuse, severe parental mental health issues, or a parent going to prison. Adverse childhood experiences (ACEs) such as these can have a detrimental impact on the physical, mental and emotional wellbeing of a child. Professionals should also be mindful that parents and caregivers may themselves have experienced adverse childhood experiences.

Response to alerting signs

It is essential that GPs are kept fully informed and involved in the management of children with perplexing presentations or where there are concerns about FII so they can support children and their families as appropriate as well as work in partnership with other professionals involved to ensure the best outcomes for children.

There is a useful summary diagram in the RCPCH guidance on page 34.

Record keeping

• All notes about a child’s condition should clearly state who reported the concerns, what was observed, and by whom.
• Records of key discussions and safeguarding supervision notes about the child’s care should be kept within every organisation’s main health record pertaining to the child to ensure that the child does not come to further harm.
• A formal agreed consensus document or minutes of professionals’ meetings shared across all participant organisations will avoid discrepancies in individual’s recollection/recording across the multi-professional group, and is preferable to individual entries in notes.
• These records should be factual and agreed by all parties present. Records must provide a clear statement of what has and has not been discussed with parents.
• Subject access requests (SARs) from parents in PP and FII cases are not uncommon. They are easier to manage if there has been open communication with parents previously. If it is thought that the subject access request may result in concerns about the child’s welfare, appropriate legal advice needs to be sought about what material should be disclosed and any material to be withheld.
• In general practice, entries related to safeguarding concerns should all be marked not for online access.

Key points

• Working with children and families where there are medically unexplained symptoms, perplexing presentations or concerns about fabricated or induced illness, can be challenging.
• These situations require a multi-disciplinary approach and should not be managed solely in general practice – a referral to paediatrics and/or CAMHS will be needed.
• When concerns arise in general practice, there should be discussion with the practice safeguarding lead and subsequently a discussion with safeguarding health professionals within the ICBs/Health Authority/Health Board.
• When a safeguarding referral is indicated, advice should be taken from safeguarding professionals as to whether the parents should be informed or not.
• Urgent safeguarding action should be taken if there is a concern that there is an immediate serious risk to the child’s health/life. This includes making an urgent safeguarding referral to children’s social care. It can also involve contacting the police if there is an immediate threat to life.

References

• RCPCH. Perplexing Presentations (PP)/Fabricated or Induced Illness (FII) in children – guidance. 2021.