1. Fabricated or Induced Illness March 2016 Dr Geoff DeBelle

2. Case definition ‘Fabricated or induced illness takes place when a caregiver elicits health care on the child’s behalf in an unjustified way’ (Glaser, 2015) – Deception is a perpetrator characteristic (DSM-5)

3. Key Feature FII should be considered when the child’s presentation or findings on assessment and investigation lead to a puzzling discrepancy with a recognised clinical picture. The child’s parent or carer (often but not exclusively the mother) promotes the sick role by – Exaggeration of real problems – Fabrication or falsification of symptoms and signs – Induction of illness.

4. Case study Cassie referred at 14 months with feeding difficulties and poor weight gain (50 th  9 th centile). Delayed developmental milestones. 18/12 Hospital admission & investigations; Gastro-oesophageal reflux. 19/12 Hospital admission: NG tube feeding Ongoing difficulties with vomiting.

5. Escalating problems Repeated need for replacement NG tubes (up to 5 per week; 32 in 5/12) 2y 3m gastrostomy undertaken 3y 1m: broken gastrostomy tube 3y 1 ½ m: broken gastrostomy tube 3y 2m: broken gastrostomy tube 3y 2m 1w: tube came out 3y 2m 1 ½ w: leaking tube (small hole)

6. Identifying risk What early signs of risk were present in this case? Could anything have been done to prevent the escalation of problems? At what stage did the case cross the threshold of concern?

7. Alerting signs – a ‘perplexing presentation’ Reported symptoms and signs are only observed by, or appear in the presence of, the parent or carer (i.e. situation specific); An inexplicably poor response to prescribed medication or other treatment; New symptoms are reported as soon as previous ones stop; Biologically unlikely history of events; Despite a definitive clinical opinion being reached, multiple opinions are sought and disputed by the parent or carer and the child continues to be presented for investigation and treatment with a range of signs and symptoms;

8. Alerting signs Child’s normal daily activities (for example, school attendance) are limited, or they are using aids to daily living (for example, wheelchairs) more than expected from any condition the child has. (NICE Clinical Guideline 89: When to suspect child maltreatment. Dec 2009)

9. The Mother Mother (perpetrator in 85-90%): – erroneously reports (not deceiving) by Exaggerating Misconstruing or misconceives real phenomena (false belief) Invents but may not intend to deceive – deceives by Falsifying or interfering with investigations Induce signs or illness in child

10. Why? Caregiver has an underlying need for child to be recognised as being ill when they are not ill, or as more ill than they actually are in order to meet their needs: – Wish for recognition as ‘heroic, suffering mother’; – To confirm false belief; – Extreme anxiety; – To maintain closeness to child; – Hostility to father/hostility to child; – Financial gain

11. The Doctor Doctor perpetuates it by supporting or not disputing the need for: – Further opinions, investigations or medical/surgical interventions; – School absence – Use of wheelchair – Financial or other support for the care of a sick child.

12. The Child Medical: – Undergoes repeated, unnecessary examinations, investigations, procedures and treatments; – Mortality from induced illness 5-8% (not an intended outcome). Psychological: – Limited or interrupted school attendance and education – Limited normal daily living activities; – Sick role (use of aids such as wheelchair) – Socially isolated – Impaired daily life beyond any known disorder

13. The Child Distorted view of illness and health: – Anxiety and confusion over state of their health; – Somatisation; – Silently trapped or enmeshed in falsifying illness;

14. Case 2 - Lewis Referred to paediatrician at 4 years, recurrent cough and wheeze Diagnosed mild asthma, treatment with inhalers Persistent problems with tiredness, fatigue 7 years - specialist in London diagnosed a rare autoimmune disorder Poor school attendance; wheelchair for trips; frequent attendance at A&E School reporting active and happy, self- management of wheeze

15. FII: Epidemiology Rare condition (McClure et al, 1996) – < 16 yrs 0.4 per 100,000 per year < 1 yr 2.8 per 100,000 77% under 5 yrs at presentation (median age 20 months) Under reported Majority identified in hospital setting but can still present in community Weight faltering is a common feature

16. Some typical presentations Epilepsy/seizures Apparent life threatening events Growth faltering and feeding problems Pain amplification syndromes Challenging behaviour/ADHD/ASD Conditions for which the diagnosis is dependent on the history (e.g. Epilepsy) Signs that are easy to fabricate (e.g. blood in nappy Symptoms that are easy to induce (e.g. vomiting)

17. The spectrum of presentation  Fabrication of signs and symptoms  Repeated investigations and second opinions  Fabrication of past medical and family history  Including “phantom” children  Falsification of hospital charts and records, and specimens  Interfering with treatments  Induction of illness by a variety of means  Poisoning; administering medication; smothering

18. Spectrum of presentation Older children may fabricate illness themselves, seemingly colluding with their carers. This so-called ‘enmeshment’ between carer and child represents a major challenge to professionals. FII may occur in children who have a pre- existing physical condition (such as asthma or cerebral palsy).

19. Current (mis) management Lack of direct observation of the child. Over-reliance on – Parental reports; – More and more investigations; – Treating symptoms and results of investigations

20. Obstacles to appropriate response Concern about ‘missing’ a treatable condition; Health professionals usually work with parents; Discomfort of thinking ill of mother; Fear of complaints and being reported to regulatory body (e.g GMC) Uncertainty about when to mention suspicion

21. What should happen Further investigation and management is generally undertaken in an inpatient setting where the child’s safety can be assessed, particularly in cases of suspected poisoning or suffocation. If the child is not an inpatient, consider whether a planned admission with careful observation would help to elucidate the diagnosis.

22. What should happen If the carers refuse to admit the child and this is deemed to place the child at further risk, refer to Social Care. The consultant who suspects FII should discuss the case at the earliest opportunity with the Named Doctor who may defer to a colleague who has expertise in FII. Discuss with nursing staff involved and the Named Nurse.

23. Management of risk Agree who will assume the role of the responsible paediatric consultant. At this stage, do not discuss concerns about FII with the family as the child may be put at risk. Ask the question: Is child in need of immediate protection? If yes, refer immediately to Social care.

24. Management of risk Consider constant supervision of the child or other measures to ensure the child’s safety with the charge nurse, as additional staff may be required. Resist requests by carers for a change of clinical team or hospital, as this may put the child at greater risk. This request may be made when it is perceived that the clinical team are suspecting FII. At this point, consider referral to Social care. Peer review can be used to support clinical decision making.

25. Chronology This is a key tool in diagnosis and must be compiled in all cases of suspected FII. Patterns of potentially worrying health seeking behaviour by carers for their child from multiple presentations at different settings can only then be recognised. Decide who will do this and the timescales involved.

26. Chronology This is a complex and time consuming task. If necessary, seek agreement from the Trust for adequate time and resources to be allocated. The health chronology should be as integrated as possible. Information from the GP is crucial. Information on siblings and the carers themselves may also be of great value.

27. Chronology Obtaining information about carer’s own health generally requires their prior consent: If this cannot be obtained without placing the child at greater risk, by arousing suspicion in the minds of the carers, it should be deferred. At this stage, a referral should be considered. A decision can then be made at a Strategy Meeting that obtaining this information is justified under a Section 47 investigation.

28. In-patient observation Any unusual events should be recorded and a distinction made between events reported by a carer and those actually witnessed. This is very important in cases of recurrent apnoea where deliberate suffocation is suspected; an event witnessed independently at onset would make this very unlikely. The carers should be informed explicitly that observation is necessary because of uncertainty about the child’s diagnosis.

29. Observation of the child Obtain full account of child’s daily functioning, including school activities. Talk with the child; ‘what child would like to change’. Determine what child is not able to do.

30. In-patient observation Agree the process of observation with the nursing staff and Named Nurse and ensure that sufficient staff are available. If there is any element of the planned observations that fall outside standard clinical protocols, such as one-one, around-the-clock supervision of a carer or covert observations, this must not be undertaken without the authority of a Section 47 investigation.

31. Records Detailed, accurate and informative health records are essential. Concerns about possible FII must be documented. Document all decisions made and all information that influenced these. All telephone conversations are to be recorded fully. The record should be kept in a secure location Relevant staff must have access to the record at all times.

32. Records Supplementary records should only be considered when security of the case record is not possible. A decision to keep supplementary records should only be made following a Strategy discussion.

33. Referral Refer immediately if the child’s safety is at risk at any point in the investigation, for example, the risk of intentional suffocation or poisoning will be a key determining factor. At this stage, carers should not be made aware of the referral nor their consent sought.

34. Referral - triggers – Real concerns about the possibility of harm to the child arising at any point; – Request by carers for a change of clinical team or clinical setting; – When information on the carers’ health is necessary; – Covert observations or round-the-clock nursing supervision is deemed necessary; – Need to obtain forensic samples

35. Strategy Discussion Assess – The level of risk to the child or young person; – Any immediate steps necessary to reduce the risk of harm, such as – Need to institute closer observation of the child; – Need for special observations such as Covert Video Surveillance ; – Nature and timing of any police investigation;

36. Assess – How the child or young person can be given the opportunity to tell their story – this may be difficult, particularly with ‘enmeshment’ of child and carer and will require careful consideration and planning; – Communication with carers, including how, when and by whom they should be informed of any child protection concerns. – Needs of carers and siblings, particularly after disclosure of concerns;

37. Assess – Any further information gathering; e.g. GP records for carers and records from other health providers such as adult mental health; – Need to keep records in a secure manner; – Need for any further investigations or opinions, these should be carefully planned with the need to contain needless investigations and procedures in mind; – Need for forensic sampling.

38. CVS If Covert Video Surveillance is considered necessary, this must not be undertaken by hospital staff. It can only be undertaken by the police following a decision reached at a Strategy meeting. CVS should only be undertaken if there is no alternative way of resolving concerns about child abuse. The use of CVS must be agreed at a Strategy discussion.

39. Strategy Discussion In most cases of FII, there is a need for more than one strategy meeting, as further decisions need to be made as additional information comes to light. If a Case conference is to be held, this can occur within 15 days of the last Strategy discussion.

40. Disclosure Disclosure of concerns to parents is a key task for professionals who should have received specialist training in this area. Consider how to support the perpetrator, family members and staff after disclosure and this will be a very stressful event. Staff support and debriefing is essential.

41. Intervention with perpetrators Intense in-patient intervention in highly specialist units has resulted in cautious reunification of the family. This requires the perpetrator to assume responsibility for their actions. Underlying chronic trauma/PTSD (associated with abuse and domestic violence) to be confronted.

42. Conclusion – the ‘test for FII’ Illness induction Clear deception by mother Parents dispute independent observations Request more investigations Seek further opinions Decline rehabilitation plan ‘Illness’ interferes with child’s current daily functioning

43. Thank you ?