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2.6 Fabricated or Induced Illness

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Contents

Definitions of key terms

Term

Definition

Synonyms (other terms sometimes used)

Medically Unexplained Symptoms (MUS)

 

The child’s symptoms, of which the child complains and which are genuinely experienced, are not fully explained by any known pathology but with likely underlying factors in the child (usually of a psychosocial nature), and the parents acknowledge this to be the case. The health professionals and parents work collaboratively to achieve evidence-based therapeutic work in the best interests of the child or young person. MUS can also be described as ‘functional disorders’ and are abnormal bodily sensations which cause pain and disability by affecting the normal functioning of the body.

Non-organic symptoms,

Functional illness,

Psychosomatic symptoms.

Perplexing Presentations (PP)

 

Presence of alerting signs when the actual state of the child’s physical/ mental health is not yet clear but there is no perceived risk of immediate serious harm to the child’s physical health or life.

 

 

Fabricated or Induced Illness (FII)

 

FII is a clinical situation in which a child is, or is very likely to be, harmed due to parent(s’)/carer(s)’ behaviour and action, carried out in order to convince doctors that the child’s state of physical and/or mental health or neurodevelopment is impaired (or more impaired than is actually the case). FII results in emotional and physical abuse and neglect including iatrogenic harm.

Munchausen Syndrome by Proxy; Paediatric Condition Falsification; Medical Child Abuse; Parent-Fabricated Illness in a Child; (Factitious Disorder Imposed on Another, when there is explicit deception)

RCPCH 2021, Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children. RCPCH guidance. [Chapter 3,  page number 11/12] Royal College of Paediatrics and Child Health

Risks and indicators

The following signs and indicators may raise concerns, but they 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. Some alerting signs are initially recognised by community or primary health care professionals such as health visitors, GPs, or community paediatricians, or by professionals in pre-school/early years, schools and other educational settings. Others are first noted by hospital-based paediatricians or in Child and Adolescent Mental Health Services (CAMHS). 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/carer’s behaviour. A single alerting sign by itself is unlikely to indicate possible fabrication. Professionals must look at the overall picture which includes the number and severity of 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.

Parent/carer behaviour

  • Parents/carers’ 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
  • Parents/carers’ 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, particularly when these are not the nearest facility
  • 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/carer
  • Repeated or unexplained changes of school (including to home schooling), of GP or of paediatrician / health team
  • Factual discrepancies in statements that the parent/carer makes to professionals or others about their child’s illness
  • Parents/carer pressing for irreversible or drastic treatment options where the clinical need for this is in doubt or based solely on parental reporting.

RCPCH 2021, Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children. RCPCH guidance. [Chapter 4, page number 18] Royal College of Paediatrics and Child Health

Adverse Childhood Experiences

When working with children and their families where there are perplexing presentations (PP) 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.

RCPCH 2021, Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children. RCPCH guidance. [Chapter 4, page number 19] Royal College of Paediatrics and Child Health

Parent / Caregiver motivation and behaviour

Both clinical experience and research indicate that the mother is nearly always involved or is the instigator of FII. The caregiver may be a single parent, or may be acting alone, unbeknown to the father. The involvement of fathers is variable. The father may be unaware, be suspicious but side-lined or may be actively involved. Rarely, fathers are solely involved. The parent may be actively supported by grandparents and there may be an intergenerational pattern. Rarely, foster carers have been known to be involved in FII. There is currently no data on same sex parental couples.

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). FII may involve physical, and/or psychological health, neurodevelopmental disorders and cognitive disabilities. There are two possible, and very different, motivations underpinning the parent’s need: the parent experiencing a gain and the parent’s erroneous beliefs. It is also recognised that a parent themselves may not be conscious of the motivation behind their behaviour. Both motivations may be present although usually one predominates.

  1. 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 and some material. Some parents benefit from the sympathetic attention which they receive; they may fulfil their dependency needs for support, which might include the continued physical closeness of their child. Parents who struggle with the management of their child may seek an inappropriate mental health diagnostic justification in the child such as Attention Deficit Hyperactivity Disorder (ADHD) or Autism Spectrum Disorder (ASD). Material gain includes financial support for care of the child, improved housing, holidays, assisted mobility and preferential car parking.

  2. The second motivation is based on the parent’s erroneous beliefs, extreme concern, and anxiety about their child’s health (e.g. 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). The parent may be misinterpreting or misconstruing aspects of their child’s presentation and behaviour. In pursuit of an explanation, and increasingly aided by the internet, the parent develops a belief about what is wrong with their child. In contrast to typical parental concern, the parent exhibiting such behaviour cannot be reassured by health professionals or negative investigations. More rarely, parents may develop fixed or delusional psychotic beliefs about their child’s state of health. The parent’s need here is to have their beliefs confirmed and acted upon, but to the detriment of the child.

These two motivations appear to be in opposition to each other, the first putting the parent’s needs before the child’s needs and the second being disproportionately over-concerned about the child’s health. However, both face professionals with dilemmas and both lead to similar forms of harm to the child (with one notable exception, illness induction, which leads to direct physical harm to and, on extremely rare occasions, the death of the child). For these reasons, and illness induction notwithstanding, both motivations are included within FII. It is important to stress that understanding the parents’ motivation is not essential to the paediatric diagnosis of PP/FII in the child. This is important because a paediatrician is not expected to understand parental motivation, but simply to understand the cause of the child’s presenting illness.

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:

  1. The most common form is by presenting and erroneously reporting the child’s symptoms, history, results of investigations, medical opinions, interventions, and diagnoses. 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.

    It is important not to confuse the reporting of situation-specific difficulties with FII, providing the parent accepts that difficulties which only occur in their presence and which are not reported elsewhere (e.g. at school) are unlikely to be indicators of a problem in the child but, rather, reflect a difficulty in the way in which the parent engages with the child.

  2. A less common way of engaging health professionals is by the parent’s physical actions. These actions nearly always include an element of deception. They 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.

RCPCH 2021, Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children. RCPCH guidance. [Chapter 4 and page number 13] Royal College of Paediatrics and Child Health

Doctors’ involvement

If a GP or education provision has concerns about Medically unexplained symptoms, Perplexing Presentations, or Fabricated and Induced Illness, it is important that they consider making a referral to Paediatrics outlining their concerns.

Most of what doctors do in the management of children, including where the presentation is not understood, is regarded as good medical practice. It consists of:

  • Taking a history
  • Examining the child
  • Ordering investigations to ascertain the correct diagnosis/es
  • Supporting and/or not disputing the need for
    • Limited school attendance
    • Use of aids eg wheelchairs
    • Financial and other support for care of the sick child
  • Accepting the parent as the conduit of information between professionals
  • Initiating or agreeing to further referrals, medications and other treatments.

However, in children with unrecognised FII, some of these actions may contribute to iatrogenic harm. In addition, the practice of repeating previous, no longer relevant, or not independently substantiated problems/diagnoses in medical correspondence and documents, perpetuates an erroneous view of the child’s state of health.

In children with FII, iatrogenic harm is caused by the doctor’s need and wish to trust and work with parents, which is fundamental to most elements of paediatric practice, and not to miss any treatable cause of illness. 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.

RCPCH 2021, Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children. RCPCH guidance. [Chapter 4,  page number15 ] Royal College of Paediatrics and Child Health

Harm to the child

Harm to the child takes several forms. Some of these are caused directly by the parent/ carer, intentionally or unintentionally, but may be supported by the doctor; others are brought about by the doctor’s actions, the harm being caused inadvertently. The following three aspects need to be considered when assessing potential harm to the child. As FII is not a category of maltreatment in itself, these forms of harm may be expressed as emotional abuse, medical or other neglect, or physical abuse. There is also often a confirmed co-existing physical or mental health condition.

Child’s health and experience of healthcare

  • The child undergoes repeated (unnecessary) medical appointments, examinations, investigations, procedures & treatments, which are often experienced by the child as physically and psychologically uncomfortable or distressing
  • Genuine illness may be overlooked by doctors due to repeated presentations
  • Illness may be induced by the parent (e.g. poisoning, suffocation, withholding food or medication) potentially or actually threatening the child’s health or life.

Effects on child’s development and daily life

  • The child has limited / interrupted school attendance and education
  • The child’s normal daily life activities are limited
  • The child assumes a sick role (e.g. with the use of unnecessary aids, such as wheelchairs)
  • The child is socially isolated.

Child’s psychological and health-related wellbeing

  • The child may be confused or very anxious about their state of health
  • The child may develop a false self-view of being sick and vulnerable and adolescents may actively embrace this view and then may become the main driver of erroneous beliefs about their own sickness. Increasingly young people caught up in sickness roles are themselves obtaining information from social media and from their own peer group which encourage each other to remain ‘ill’
  • There may be active collusion with the parent’s illness deception
  • The child may be silently trapped in falsification of illness
  • The child may later develop one of a number of psychiatric disorders and psychosocial difficulties.

RCPCH 2021, Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children. RCPCH guidance. [Chapter 4,  page number 16] Royal College of Paediatrics and Child Health

Action to be taken

Severity

Severity of FII can be considered in two ways: a) severity of the parent’s actions, b) severity of the harm to the child.

a) Severity of the parent’s actions

This can be placed on a continuum of increasing severity which ranges from anxiety and belief-related erroneous reports, to deception by fabricating false reports, to interfering with samples through to illness induction. However, there is no evidence about the likelihood or factors associated with a parent moving from one point on this continuum to another.

b) Severity of harm to the child

The different aspects of harm to the child may coexist. Severity of the harm to the child needs to be assessed according to both the intensity of each aspect of the harm, and by the cumulative effect of all the aspects.

Moreover, with the exception of illness induction (which can lead to serious illness and occasionally death of the child) the nature of the parent’s motivations and the severity of their actions bear little relation to severity of harm to the child.

Therefore, in assessing the severity of the situation, it is important to focus on the harmful effects on the child, rather than gauge severity by what the parent is saying or doing. Although if there are clear deceptive parental actions or illness induction, it is likely that the harm to the child will be more severe.

Siblings

In some families, only one child is subject to FII or has a PP and this child may initially have had a genuine illness which began the relationship between the parent and health professionals. In other families, several children may be affected by FII or have a PP simultaneously or sequentially. Siblings who are not subject to FII or have a PP may become very concerned and distressed by the apparent ill-health of their affected sibling or may feel and be neglected.

Other victims

There have been reports of FII perpetrators also abusing spouses or animals. There may need to be consideration of referral to Adult Safeguarding or the RSPCA.

RCPCH 2021, Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children. RCPCH guidance. [Chapter 4,  page number 17] Royal College of Paediatrics and Child Health

Alerting signs with no immediate serious risk to the child’s health / life – Perplexing Presentations (PP)

The term Perplexing Presentations (PP) denotes the presence of alerting signs to possible FII, in the absence of the likelihood of immediate serious risk to the child’s physical health or life. Perplexing Presentations nevertheless indicate possible harm to the child which can only be resolved by establishing the actual state of health of the child. They therefore call for a carefully planned response that should utilise the areas Early Help procedures. This should be led by the responsible clinician with advice from the Named Doctor, usually in the secondary, and occasionally tertiary centre, in which paediatricians or CAMHS clinicians are employed. The essence of the response is to establish the current state of health and functioning of the child and resolve the unexplained and potentially harmful situation for the child. The term Perplexing Presentations and management approach can and should be explained to the parents and the child, if the child is at an appropriate developmental stage. Reflecting with parents about the differing perceptions that they and the health team have of the child’s presenting problems and possible harm to the child may be very helpful in some cases, particularly if it is done at an early stage.

If the initial concerns arise directly from school, or other professionals, as opposed to health, it is recommended that school explain to the parents that information is required from health to understand the concerns e.g. poor school attendance. It is then appropriate for the school, or other professional to offer an Early Help assessment and seek agreement to contact and involve health (either GP, consultant paediatrician or child psychiatrist). If the parents do not agree to an Early Help assessment and the sharing of information about the child the school/ other organisation will need to decide what action they should take following local threshold guidance and considering the overall impact on the child.  At this stage, professionals should refrain from using FII terminology, as the state of the child’s health has not yet been assessed. If primary healthcare is the only contact for the child, then they may wish to refer to a paediatrician for further assessment of the child’s health. If the response from health is felt to be inadequate, education or other professionals can contact either the Named GP or Named Doctor for Safeguarding Children for a Community or Hospital Trust as appropriate, for advice. If concerns arise within General Practice, it is recommended that there should be consultation with the Named GP for Safeguarding Children in the first instance.

At any stage during this process, should new information come to light to suggest that the child is currently suffering from significant harm, referral to children’s social care and/or the police must be made, alongside the process outlined in this guidance. The urgency with which this is done and whether or not parents are informed about the referral before a professional multi-agency discussion will vary according to the circumstances of each case.

RCPCH 2021, Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children. RCPCH guidance. [Chapter 5, page number 21] Royal College of Paediatrics and Child Health

Response to Perplexing Presentations (PP)

This is a complex and time-consuming process, led by the Responsible Paediatric or CAMHS Consultant with advice from the Named Doctor and the health safeguarding team (who do not have clinical responsibility for the child) – all should be supported and have protected time to provide the necessary focus. Responding to PP requires a multidisciplinary & ideally multi-agency approach, utilising local Early Help procedures, although it is imperative that the responsible consultant continues to have overall clinical responsibility for the child and that the background safeguarding processes are supported by the Named Doctor and the health safeguarding team.

If the Responsible Paediatric or CAMHS Consultant (who may change during the process) is also the Named Doctor, then another paediatrician in the Trust will need to undertake this consultative role, possibly the Designated Doctor. This means that safeguarding decisions can be made objectively, free from duress, threats and complaints and the responsible paediatric consultant has appropriate support in these challenging cases.

The essence of management is establishing, as quickly as possible, the child’s actual current state of physical and psychological health and functioning, and the family context. The responsible paediatric consultant will need to explain to the parents and the child (if old enough) the current uncertainty regarding the child’s state of health, the proposed assessment process and the fact that it will include obtaining information about the child from other caregivers, health providers, education and social care if already involved with the family, as well as likely professionals meetings. Wherever possible this should be done collaboratively with the parents. If they do not give agreement for this to happen, the parents’ concerns about this process should be explored and can often be dispelled. However in line with General Data Protection Regulations (GDPR) for the UK information sharing can take place without consent if: there are safeguarding concerns, it is in the best interests of the child, is necessary and proportionate and is done in a manner according to the regulations. Strong parental objections could indicate a referral to children’s social care on the grounds of medical neglect - that the doctors are unable to establish the state of health and medical needs of the child.

When paediatricians become concerned about a perplexing presentation, an opinion from an experienced colleague needs to be obtained and a tertiary specialist may be necessary. Parents themselves may request another opinion and it is their right to do. However, this opinion giver should be supplied with all the background information to help in informing the opinion and to avoid the repetition of investigations unnecessarily. The seeking of multiple alternative opinions, particularly when there has already been a reasonable diagnostic formulation, is almost always harmful to the child and may well increase concern about FII.

There may need to be one or more professionals’ meetings to gather information, and these can be virtual meetings. Where possible, families should be informed about these meetings and the outcome of discussions as long as doing so would not place the child at additional risk. Care should be given to ensure that notes from meetings are factual and agreed by all parties present. Notes from meetings may be made available to parents, on a case by case basis and are likely to be released to them anyway should there be a Subject Access Request for the health records.

Child’s health and wellbeing

The responsible paediatric consultant should:

  • Collate all current medical/health involvement in the child’s investigations and treatment, including from GPs, other Consultants, and private doctors, with a request for clarification of what has been reported and what observed. (This is not usually a request for a full chronology, which would need to include all past details of health involvement and which is often not relevant at this point).
  • Ascertain who has given reported diagnoses and the basis on which they have been made, whether based on parental reports or on professional observations and investigations.
  • Consider inpatient admission for direct observations of the child, including where relevant the child’s input and output (fluids, urine, stool, stoma fluid as applicable), observation chart recordings, feeding, administration of medication, mobility, pain level, sleep. If discrepant reports continue, this will require constant nurse observations. Overt video recording may be indicated for observation of seizures and is already in widespread use in tertiary neurology practice to assess seizures (which must be consented to by parents).
  • Consider whether further definitive investigations or referrals for specialist opinions are warranted or required.
  • Obtain information about the child’s current functioning, including: school attendance, attainments, emotional and behavioural state, peer relationships, mobility, and any use of aids. It is appropriate to explain to the parents the need for this. If the child is being home schooled and there is therefore no independent information about important aspects of the child’s daily functioning, it may be necessary to find an alternative setting for the child to be observed (eg hospital admission).

Parents’ views

The responsible paediatric consultant should:

  • Obtain history and observations from all caregivers, including mothers and fathers; and others if acting as significant caregivers.
  • If a significant antenatal, perinatal or postnatal history regarding the child is given, verify this from the relevant clinician.
  • Explore the parents’ views, including their explanations, fears and hopes for their child’s health difficulties.
  • Explore family functioning including effects of the child’s difficulties on the family (eg difficulties in parents continuing in paid employment).
  • Explore sources of support which the parent is receiving and using, including social media and support groups.
  • Ascertain whether there has been, or is currently, involvement of Early Help services or Children’s Social Care. If so, these professionals need to be involved in discussion about emerging health concerns.
  • Ascertain siblings’ health and wellbeing.
  • Explore a need for Early Help and support and refer to Children’s Social Care on a Child in Need basis, where appropriate depending on the nature and type of concerns, with agreement from parents.

Child’s view

The responsible paediatric consultant should:

  • Explore the child’s views with the child alone (if of an appropriate developmental level and age) to ascertain:
    • the child’s own view of their symptoms;
    • the child’s beliefs about the nature of their illness;
    • worries and anxieties;
    • mood;
    • wishes.
  • Observe any contrasts in verbal and non-verbal communication from the child during individual consultations with the child and during consultations when the parent is present. (Consider a chaperone in line with your organisations chaperone policy.)

It is important to note that some children’s and adolescent’s views may be influenced by and mirror the caregiver’s views. The fact that the child is dependent on the parent may lead them to feel loyalty to their parents and they may feel unable to express their own views independently, especially if differing from the parents.

The RCPCH have developed resources, with input from children and young people, to aid their communication with health professionals. The ‘Being Me’ resources help children and young people to share who they are, how they are feeling and what support they would like. The materials include: feelings poster, children’s health and wellbeing passport and top tips for doctors. These tools are especially effective for children and young people that do not feel comfortable to freely share their experiences, as described by this young person:

“Emojis are an easy and fun way for us to tell doctors how we are feeling when we can’t fully explain or don’t want to. Children can point to an emoji or draw with their doctor.” RCPCH &Us Voice Bank, 2018.

Health professionals should consult the ‘Me first’ communication model for guidance; these training and materials have been co-designed and developed with children and young people.

The responsible paediatric consultant should provide signposting advice for children, young people and their parents on where appropriate to access more information or support.

RCPCH 2021, Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children. RCPCH guidance. [Chapter 5, page number24] Royal College of Paediatrics and Child Health

Reaching a consensus formulation about the child’s current health, needs, and potential or actual harm to the child

The aim of the full medical and psychosocial review is to gain clarity about any verified illnesses, and any remaining Perplexing Presentations. Binary thinking about difficulties, regarding them as either physical or psychological is unhelpful, as both will be relevant. As is often the case, several doctors and other health professionals will have been involved in diagnoses and treatment.

Consensus about the child’s state of health needs to be reached between all health professionals involved with the child and family, including GPs, Consultants, private doctors and other significant professionals who have observations about the child, including education and children’s social care if they have already been involved. A multi-professional meeting is required in order to reach consensus. This professionals meeting should be chaired by the Named Doctor (or a clinician experienced in safeguarding with no direct patient involvement) to ensure a degree of objectivity and to preserve the direct doctor-family relationship with the responsible clinician. Parents should be informed about the meeting and receive the consensus conclusions with an opportunity to discuss them and contribute to the proposed future plans (see below).

It is the number and severity of the concerns in the alerting signs which led to the need to investigate the perplexing presentation. The decision that has to be made is whether, on the one hand, the perplexing presentation can be explained by either a verified condition/s or by medically unexplained symptoms emanating from the child or, on the other hand, whether there is concern that the child is coming to harm either by fabrication of symptoms by the parents and/or their by their fixed erroneous beliefs about the child’s health.

In order to resolve these concerns, a decision needs to be made about whether the perplexing presentation is explained and resolved by a verified medical condition in the child, or whether concerns remain.

In order to resolve this, a consensus needs to be reached in a meeting between all professionals about the following issues:

Either

  • That all the alerting signs and problems are explained by verified physical and/or psychiatric pathology or neurodevelopmental disorders in the child and there is no FII (false positives).
  • Medically Unexplained Symptoms from the child free from parental suggestion
  • That there are perplexing elements but the child will not come to harm as a result.

Or

  • That any verified diagnoses do not explain all the alerting signs
  • The actual or likely harm to the child and or siblings

And agree all of the following

  • Whether further investigations and seeking of further medical opinions is warranted in the child’s interests
  • How the child and the family need to be supported to function better alongside any remaining symptoms, using a Health and Education Rehabilitation Plan (see below for details)
  • If the child does not have a secondary care paediatric Consultant involved in their care, consideration needs to be given to involving local services
  • The health needs of siblings
  • Next steps in the eventuality that parents disengage or request a change of paediatrician in response to the communication meeting with the responsible paediatric consultant about the consensus reached and the proposed Health and Education Rehabilitation Plan.

Significant disagreements between health professionals about any important aspects of the diagnosis and medical management of the child, will need to be resolved. In such cases, the Named or Designated Doctor for Safeguarding Children should convene and chair a Health Professionals Meeting to agree on the medical issues. Where there is no Designated Doctor in post / available, then local escalation policies should be followed. The Designated Doctor can only perform this role if they have never been clinically involved with the case. Trusts need to establish alternative arrangements for another Designated Doctor from a neighbouring area to chair such a meeting in the eventuality that this is required. There must be a clear escalation policy to the Medical Director where there are significant concerns about how a case is being managed within any healthcare organisation. Clear record keeping of meetings, discussions and decisions is vital.

RCPCH 2021, Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children. RCPCH guidance. [Chapter 5, page number 26] Royal College of Paediatrics and Child Health

Communication to parents and child

Once health consensus has been achieved, a meeting should be held with the parents, the responsible paediatric consultant and a colleague (never a single professional). The meeting will explain to the parents that a diagnosis may or may not have implications for the child’s functioning, and that genuine symptoms may have no diagnosis. It is preferable to acknowledge the child’s symptoms rather than use descriptive ‘diagnoses’. It is often useful to use the term ‘issues/concerns’ in clinical letters rather than ‘diagnoses’ in these circumstances.

The current, as of now, consensus opinion is offered to the parents with the acknowledgment that this may well differ or depart from what they have previously been told and may diverge from their views and beliefs. A plan is then made with the parents about what to explain to the child and what rehabilitation is to be offered and how this will be delivered. This plan should be negotiated with the parents and child if of sufficient maturity, as engagement in such a plan is necessary for it to work. The plan should be explained to younger children even if they are not sufficiently mature to be involved in the plan’s construction. It is premature, and important not to discharge the child from paediatric care even if there is no current verified illness to explain all the alerting signs, until it is clear that rehabilitation is proceeding.

The RCPCH have developed guidance for paediatricians and health professionals on how best to achieve consensus with parents, particularly on the prevention, recognition and management of conflict in paediatric practice, some of the principles are applicable to general routine care:

FII - Achieving consensus with parents

Liaising with General Practitioners (GPs)

GPs hold lifelong relationships with patients. They may have extensive knowledge and relationships with multiple generations of families. 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.

Referring to Children’s Services

If there is actual or likely harm to the child or siblings, the implication is that the child has been subject to FII. The question of future harm to the child hinges on whether the parents recognise the harm and are able to change their beliefs and actions in such a way as to reduce or remove the harm to the child. In order for this to be tested the consensus medical view about the child’s actual state of health and the consequences needs to be discussed with the parents and the child in terms of likely reduced medical intervention, the child’s improved daily functioning and a revised view of the child’s state of health. This requires the co-construction of a Health, Education and Rehabilitation Plan with the parents and child and implementation of this plan (see details below). However, the question arises as to whether in addition to this, there needs to be a referral to children’s social care at this point.

In some situations, the severity of the harm to the child therefore mandates immediate referral to children’s social care due to the level of harm that has been, or is likely to be, caused to the child. However, outside the court arena, there is no absolute clarity about when harm reaches the threshold of significance. Arguably, in some cases, if parents and child (if of an appropriate developmental level) are able to understand the need for and are able to agree a Health and Education Rehabilitation Plan, immediate referral to children’s social care may not be necessary as long as the plan is being monitored carefully, proceeding satisfactorily and agreed goals are being reached. The decision whether to refer to children’s social care at this point in the process lies ultimately with local health professionals working within their multi-agency procedures and they can seek a consultation from Children’s Services, prior to referral. If a referral is made, the reasons for this referral will need to be discussed with the family beforehand and, from a health point of view, the Health and Education Rehabilitation Plan will need to continue wherever possible regardless of referral.

Professionals in health should also be aware that they do not always have all the pieces of the safeguarding jigsaw puzzle. When a decision is being made about whether to refer children to children’s social care, professionals should consider whether they have all the information from other agencies which is required to inform their risk assessment about levels of harm. If there is concern that they do not have this information particularly when parents decline to give consent for information sharing, a referral to children’s social care may be necessary because of professional inability to assess the level of harm without the intervention of children’s social care.

RCPCH 2021, Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children. RCPCH guidance. [Chapter 5, page number 27] Royal College of Paediatrics and Child Health

Health and Education Rehabilitation Plan

An example Health and Education Rehabilitation Plan template has been provided:

 FII - Health Education Rehab Plan

This plan should be developed and implemented, whatever the status of children’s social care involvement is.

Development of the Health and Education Rehabilitation Plan requires a coordinated multidisciplinary/ multi-agency approach and negotiation with parents and children and usually will involve their attendance as appropriate at the relevant meetings.  Localised Early Help procedures may help facilitate this process. Engagement and agreement by the child and family is pivotal to the success of the Plan. The Plan is led by one agency (usually health) but will also involve education and possibly children’s social care. It should also be shared with an identified GP. The Plan must specify timescales and intended outcomes. There needs to be agreement about who in the professional network will hold responsibility for coordinating and monitoring the Plan, and who will be the responsible paediatric consultant (most likely to be a secondary care paediatrician). It is important that the Trust employing the professional with this responsibility provide the clinician with adequate resources for this task to be fulfilled. Consideration needs to be given to what support the family require to help them to work alongside professionals to implement the Plan. This may include psychological support and / or referral to children’s social care for additional support.

The Plan requires health to rationalise and coordinate further medical care and may include:

  • Reducing/stopping unnecessary medication (eg analgesics, continuous antibiotics)
  • Resuming oral feeding
  • Offering graded physical mobilisation.

There should be a discussion with the patient’s registered GP regarding what role they may be able to take in supporting the management and care of the patient.

Optimal education needs to be re-established (when the child is of school age), with appropriate support for the child and family.

The Health and Education Rehabilitation Plan should detail how the child and caregivers will be psychologically supported. This is multifaceted and requires a coordinated child and family mental health approach, which may or may not involve CAMHS, depending on local referral criteria.

Psychological support should aim to:

  • Help the child to adjust to a better state of health, by using coping strategies for symptoms with a cognitive behavioural approach. The child might also need support for the loss of gains associated with being a sick child
  • Help the child and the family, including the siblings, to construct an account which explains the evolution of the child’s difficulties as well as the improvement in the child. This needs to be truthful and may be distressing to the child who will need support
  • Explore the parent’s motivations, including: anxiety, compassion, beliefs, fulfilment of needs, and the implications and likely changes for the parent when the child’s state of health is improved and the child is functioning optimally. This will require helping the parent to adjust to having a well or better child
  • Consider the need for referral of the parent by the GP to adult mental health services. This is in order for both the parent and professionals to better understand the nature of the parent’s actions, any mental health diagnoses, motivations, prognosis and likely capacity to change, indication of treatment to effect change and who is likely to provide treatment.

RCPCH 2021, Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children. RCPCH guidance. [Chapter 6, page number 29] Royal College of Paediatrics and Child Health

Regular review of Plan

The Health and Education Rehabilitation Plan needs to be reviewed regularly with the family according to the timescales for achieving the specified outcomes, especially regarding the child’s daily functioning. This should continue until the aims have been fulfilled and the child has been restored to optimal health and functioning and the previous alerting signs are no longer of concern. Agreement needs to be reached by the professionals involved and the family about who will review the plan and when. It is essential to identify a lead professional to coordinate care and organise regular review of the plan. This may be the previous responsible consultant paediatrician or another more appropriate health professional as decided by the multi-disciplinary team. Appropriate health professionals to lead on the plan will vary on a case by case basis and could include:

  • Consultant Hospital Paediatrician
  • Consultant Community Paediatrician
  • Consultant Child and Adolescent Psychiatrist

If the child has either a Child in Need or a Child Protection Plan it may be appropriate for a social worker to take the lead in coordination in conjunction with health and education teams, as the aims of the Health and Education Rehabilitation Plan would form part of that plan. It is important to guard against what might be seen as disguised compliance by the parents.

An important aspect of the fulfilment of the Health and Education Rehabilitation Plan is the parent’s ability to now hold a realistic view of the child’s health and health-related needs and to be seen to have to communicated this to the child.

RCPCH 2021, Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children. RCPCH guidance. [Chapter 6,  page number 30] Royal College of Paediatrics and Child Health

Long term follow-up

All children who have required a Health and Education Rehabilitation Plan, unless there is a permanent positive change in primary caregivers, will require long term follow up by a professional at the closure of the plan. Depending on individual circumstances it is advisable to continue to be alert to possible recurrence of concerns either in the child(ren) or their siblings. Education and primary health are the appropriate professionals to monitor the children’s progress and to identify re-emerging or new concerns.

FII - Process Summary

RCPCH 2021, Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children. RCPCH guidance. [Chapter 6,  page number 31] Royal College of Paediatrics and Child Health

When the Health and Education Rehabilitation Plan is not working – necessary referral to children’s social care

If the parents disagree with the consensus feedback and an effective Health and Education Rehabilitation Plan cannot be negotiated, or it becomes apparent that there is lack of engagement with the Plan which had been agreed with them, then it is necessary to refer the child to children’s social care. This is on the basis that the child’s functioning and/or development is being avoidably impaired by the parents’ behaviour and any harm caused has now become significant. Parental disagreement may take the following forms: active dispute, requesting additional unwarranted investigations, seeking further inappropriate medical opinion(s), continuing to seek unnecessary or alternative further diagnoses, declining the Plan, and / or the rehabilitation process fails to proceed (eg if the plan requires to attend school and they are no longer doing so).

The referral to children’s social care should be discussed with parents and the reasons for professional concern explained. The emphasis should be on the nature of the harm to the child including physical harm, emotional harm, medical or other neglect and avoidable impairment of the child’s health or development.

In order to help to ensure that the referral is acted upon appropriately it should describe the concerns, define the harm and provide evidence of inability of the health professionals to manage the situation on a voluntary basis. The referral should include all of the following, using plain language:

  • A clear explanation of any verified diagnoses with a clear description of the functional implications of the diagnosis(es) for the child
  • Details of the nature of the concerns
  • Description of independent observations of the child’s actual functioning, medical investigations, detailing all medical services involved and the consensus medical and professional view about the child’s state of health
  • Information given to the parents and child about diagnoses and implications
  • Description of the help offered to the child and the family to improve the child’s functioning (eg the Health and Education Rehabilitation Plan)
  • The parents’ response
  • Full description of the harm to the child, and possibly to the siblings, in terms of physical and emotional abuse, medical, physical and emotional neglect.

A chronology of the child’s health and healthcare is often requested at the point of referral. However, preparing a full chronology (see below) is extremely time-consuming, and is not actually needed immediately. Awaiting the preparation of a full chronology will delay the process during which the child might be left at ongoing risk while a chronology is being compiled.

Response requested from children’s social care

The reason for referring the child to social care is the need to reduce the harm to the child. Children's social care in turn undertake an assessment to determine whether the significant harm threshold has been reached, what the child’s needs are and to intervene to reduce or prevent harm. This should include supporting the Health and Education Rehabilitation Plan. In addition, the child will need to be protected from being taken to health professionals unnecessarily by the parent if they continue to give unreliable information about the child, as health professionals unaware of the full context will not have the necessary information on which to assess the child which may be to the detriment of the child’s health and wellbeing.

If the referral is declined as not reaching the threshold for children’s social care assessment and support, or the response does not appear to be appropriate, then every effort should be made for health and children’s social care to understand each other’s professional opinions and if necessary the local dispute resolution/ escalation procedures should be used.  

Children’s social care will often request a chronology from health to inform their assessment. In cases of professional dispute, the evidence contained within a full chronology may be invaluable, along with the comprehensive referral (described above) with a health assessment report outlining evidence of professional concerns, the impact on the child and actions taken so far by health professionals to attempt to resolve the issues.

RCPCH 2021, Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children. RCPCH guidance. [Chapter 7, page number 32] Royal College of Paediatrics and Child Health

Strategy meetings / discussion

If there is reasonable cause to suspect the child is suffering, or is likely to suffer significant harm, children’s social care must convene and chair a strategy discussion that involves all the key professionals responsible for the child’s welfare. It should, at a minimum, include children’s social care, the police, the GP and/or paediatric consultant responsible for the child’s health and the community paediatric nursing service or if the child is an in-patient, a senior ward nurse. It is also important to consider seeking advice from the designated safeguarding doctor and/, or having present, a paediatrician who has expertise in the branch of medicine, for example respiratory, gastroenterology, neurology or renal which deals with the symptoms and illness processes caused by the suspected abuse. This would enable the medical information to be presented and evaluated from a sound evidence base. Other professionals involved with the child such as the GP, health visitor and staff from education settings should be involved also as appropriate. It may be appropriate to involve the local authority’s solicitor at this meeting. Staff should be sufficiently senior to be able to contribute to the discussion of often complex information, and to make decisions on behalf of their agencies.

Consultation with peers or colleagues in other agencies is an important part of the process of making sense of the underlying reasons for these signs and symptoms and what is happening for the child.

The strategy discussion/ meeting should be used to:

  • share available information; to collate a multi-agency chronology. All agencies should prepare and bring their own chronology to the strategy meeting.
  • agree the conduct and timing of any criminal investigation; and
  • decide whether enquiries under section 47 of the Children Act 1989 should be undertaken, or assessment under section 17 Children Act 1989.

NB: Strategy discussions/meetings may be independently chaired.

In cases of suspected FII decisions should also be made at the strategy discussion about:

  • whether the child requires constant professional observation and, if so, whether or when the carer(s) should be present;
  • whether it is necessary for records to be kept in a secure manner to safeguard the child’s welfare, and how this will be ensured;
  • what immediate and short-term action is required to support the child, and who will do what by when;
  • further paediatric assessment;
  • any factors such as the child and family's culture, ethnicity and language which should be taken into account;
  • factors that should be considered if the child is disabled;
  • the needs of siblings and other children with whom the alleged perpetrator has contact;
  • the nature and timing of any police investigations, including the analysis of samples. This is particularly pertinent if covert video surveillance is being considered.

If at any point there is medical evidence to indicate the child's life is at risk or there is a likelihood of serious immediate harm, child protection powers should be used to  secure the immediate safety of the child.

More than one strategy discussion may be necessary. This is likely where the child’s circumstances are very complex, and a number of discussions are required to consider whether and, if so, when to initiate section 47 enquiries.

Legal advice about how to proceed should always be sought and made directly available to doctors who are responsible for making clinical decisions in these cases. Such advice should be documented in medical and children’s social care records.

When it is decided that there are grounds to initiate a Section 47 Enquiry as part of a Social Work Assessment, decisions should be made at the Strategy Discussion about how the Section 47 enquiry will be carried out including:

  • What further information is required about the child and family and how it should be obtained and recorded;
  • Whether it is necessary for records to be kept in a secure manner and how this will be ensured;
  • Whether the child requires constant professional observation and if so, whether or when carer(s) should be present;
  • Who will carry out what actions, by when and for what purpose, in particular planning further paediatric assessment(s);
  • Any factors, such as the child and family's culture, religion, ethnicity and language which should be taken into account;
  • Effective communication between colleagues is essential if to ensure a good outcome for the child is to be achieved. Concerns about FII should be mentioned in all communications about the case, and the responsible social worker and paediatric consultant should be the main conduit for communications.
  • The needs of siblings and other children with whom the alleged abuser has contact;
  • The needs of parents or carers;
  • The nature and timing of any police investigations, including analysis of samples and covert surveillance. The use of covert video surveillance (CVS) is governed by the Regulation of Investigatory Powers Act 2000
  • All personnel including nursing staff who will be involved surveillance use should have received specialist training.
  • Children's Social Care Services team should have a contingency plan in place, which can be implemented immediately if covert video surveillance provides evidence of the child suffering Significant Harm.
  • How information will be shared with parents and at what stage.

Outcome of Enquiries:

  • Concerns not substantiated - determine and agree ongoing help and support of the child and family and the best means of meeting these
  • Concerns substantiated, but child not judged to be at continuing risk of significant harm – children’s social care, in consultation with other agencies, should take carefully any decision not to proceed to an Initial Child Protection Conference where it is known that a child has suffered significant harm as a result of fabricated or induced illness

Concerns substantiated, and child judged to be at continuing risk of harm - initiate an Initial Child Protection Conference

Police

This section should be read in conjunction with paragraphs 2.97 – 2.105 of Working Together which set out the principles applying to the police role in child protection investigations.

Safeguarding children in whom illness is fabricated or induced

Any suspected case of fabricated or induced illness may also involve the commission of a crime, and therefore the police should always be involved in accordance with Working Together Multi-agency guidance. Events such as intentional smothering or poisoning are clearly criminal assaults, but more subtle forms of child abuse, such as wilfully interfering with feeding lines or causing unnecessary medical intervention to be undertaken, may also be criminal acts.

The police should be alerted to suspected cases of fabricated and especially induced illness as early as possible. It may be crucial for any ongoing criminal investigation that the carer is not made aware of the child protection concerns. There are many low-key enquiries which can be made by the police before any proactive investigation is launched. At this stage, i.e. before suspicions are confirmed, the responsible consultant for the child’s health (usually a paediatrician) should retain the lead role for the child’s health, and the priority of police officers should be to assist the paediatrician, where relevant and appropriate in reaching an understanding of the child’s health status. The balance may change when it becomes clear whether or that a crime appears to have been committed. In such circumstances, the police will need to ensure the rights of the suspect are upheld and that evidence is gathered in a fair and appropriate way.

The Police Service is the prime agency for gathering evidence in connection with criminal cases. There is sometimes reluctance on the part of doctors to involve the police, but it must be remembered that all professionals should be working towards the same goal, i.e. securing the safety of the child. It may well be that enquiries made by the police assist in identifying that the underlying explanation for the child’s symptoms is not related to harm caused by a carer. In any case, the police should work within the multi-agency framework, and all relevant information should be shared with those professionals treating the child. Any evidence of child abuse gathered by the police will normally be available for use by the local authority in any care proceedings.

The police use technical means to gather evidence in many types of criminal enquiry, and it may be appropriate to use such methods, for example covert video surveillance, in cases of suspected fabricated or induced illness. In a case, where this is indicated as appropriate by the multi-agency strategy discussion, the police will supply any equipment required and be responsible for monitoring and managing the process. The police, like other public authorities, are bound by the Human Rights Act 1998 and the Regulation of Investigatory Powers Act 2000. Any operations within this context therefore will be carefully controlled and police managers will be fully accountable. Doctors or other professionals should not independently carry out covert video surveillance. If the suspicion of child abuse is high enough to consider the use of such a technique, the threshold must have been passed to involve the police and children’s social care services. The National Crime Faculty provides confidential good practice advice for police officers.

The police should carry out any work within a hospital sensitively and delicately, with any disruption to normal ward life being kept to a minimum. Any arrest or interview in a hospital setting should be carried out as sensitively as possible, ideally using plain clothes officers, to:

  • safeguard children in whom illness is fabricated or induced 
  • avoid disruption to patients and staff. The inter-agency management team should, if possible, consider the arrest strategy well in advance of it being carried out.

Irrespective of what evidence is likely to be used in the Civil Court or the Criminal Court or both, it must be gathered to the highest standards. When the police are involved in a situation where induced or fabricated illness is suspected, even greater care should be taken to ensure that the investigation is thorough and professional, and led by an experienced senior investigating officer.

Further information

RCPCH 2021, Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children. RCPCH guidance. Royal College of Paediatrics and Child Health

This page is correct as printed on Thursday 26th of May 2022 06:41:34 PM please refer back to this website (http://westmidlands.procedures.org.uk) for updates.
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