SCOPE OF THIS CHAPTER
This chapter outlines the key points in relation to perplexing presentations and fabricated or induced illness in children, and how to make a referral to Children's Social Care where there are concerns about a child.
This chapter was reviewed in August 2021 and amended throughout with reference to the revised RCPCH guidance on Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children.
- Possible Harm to Children
- Early Help
- Alerting Signs of Possible PP / FII in a Child
- Response to Alerting Signs
- Referral to Children’s Social Care
- Record Keeping
- Management Oversight and Support
- Appendix 1: Flowchart to Illustrate the Principle of Managing Identified Perplexing Presentations (PP) or Fabricated or Induced Illness (FII)
Parents’/carers’ health seeking behaviour on behalf of their children forms a spectrum, with medical neglect at one end and perplexing presentations (PP) and fabricated and induced illness (FII) at the other. Recognition of PP and FII usually emerges over a period of time.
There is ongoing debate about terminology but the following are currently accepted. It is important to recognise that there is often a co-existing physical or mental health condition in the child.
A. Medically Unexplained Symptoms
The child’s symptoms are genuinely experienced but are not fully explained by any known pathology, and are likely to emanate from the child (usually relating to issues of a psycho-social nature). The parents acknowledge this to be the case and will work collaboratively with health professionals to achieve therapeutic work. (Also known as functional or psychosomatic disorders). Symptoms may include pain or disability. This is usually managed within health.
B. Perplexing Presentations
Alerting signs (for FII) are present, but the actual state of the child’s physical or mental health is not yet clear and there is no immediate perceived risk to the child’s physical health or life.
C. Fabricated or induced illness (FII)
The child is or is very likely to be harmed due to the carer’s behaviour and actions, carried out in order to convince the doctors that the child’s state of physical and/ or mental health or neurodevelopment is impaired, or more impaired than is actually the case. Commonly FII involves the presenting and erroneous reporting of the child’s symptoms, history, results of investigations, medical opinions, interventions and diagnoses. FII results in emotional and physical abuse and neglect, including iatrogenic (i.e. caused by medical examination or treatment) harm.
The mother is nearly always involved or is the instigator of PP/FII, but other adults may be involved. The parent/carer/responsible adult is referred to as “carer” throughout this chapter.
If any concerns relate to a member of staff, these should be discussed with the relevant named or designated professional who, as well as ensuring the immediate safety of the child, will follow procedures in respect of allegations against staff. See Allegations Against Staff, Carers and Volunteers Procedure.
Throughout this guidance practitioner refers to any professional such as doctors/paediatrician, health professional or practitioner from any agency working with a child/young person.
It is important to highlight that any practitioner may suspect or identify concerns regarding FII/PP and is responsible in seeking advice/guidance.
Two possible but very different motivations drive the behaviour that results in PP or FII:
- The carer experiences a benefit that may be material or psychosocial;
- The carer holds erroneous beliefs, extreme concern and anxiety and cannot be reassured.
Doctors have a fundamental need and wish to trust and work with carers and not to miss any treatable cause of illness. However, in the face of unrecognised FII, harm to a child may be caused by unnecessary or invasive medical investigations or treatments.
2. Possible Harm to Children
The child may be harmed in a variety of ways:
Child’s health and experience of healthcare
- The child undergoes repeated (unnecessary) medical appointments, examinations, investigations, procedures and treatments that may be experienced as physically and psychologically uncomfortable or distressing;
- Genuine illness may be overlooked due to repeated presentations;
- Illness maybe induced by the carer (e.g. poisoning, suffocation, withholding food or medication and potentially threatening the child’s health or life).
Effect on the child’s development and daily life
- The child’s education is limited or interrupted;
- 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 anxious about their state of health;
- The child may develop a false self-view of being sick and vulnerable. Adolescents may embrace this and may then become the main driver of the behaviour. Social media may encourage this;
- There may be active collusion with the carer’s behaviour;
- The child may be silently trapped in the falsification;
- The child may later develop a psychiatric disorder or psychosocial difficulties.
3. Early Help
An Early Help Assessment is an assessment tool that engages the family to identify the emerging needs of children and young people and to plan and coordinate appropriate support. Some families have participated in an Early Help Assessment by the time concerns about PP or FII are being investigated and the participating practitioners should be involved in professionals’ meetings.
Consideration should be given to introducing an Early Help Assessment at this stage, if it has not already taken place and if it is deemed appropriate. Any reluctance to engage by the carer should raise concerns. Please see the Providing Early Help Procedure, and Early Help Assessment (Documents Library, Assessment Tools).
4. Alerting Signs of Possible PP / FII in a Child
Any practitioner working with a child/young person may notice discrepancies between reported and observed medical conditions or disabilities and may have concerns that a child is suffering from PP or FII. This may include practitioners working with the child's parents who may note relevant concerns e.g. mental health practitioners may identify a child being drawn into the parent's illness - in these circumstances the practitioner must remain curious and consider sharing information with those responsible for the child's health such as the General Practitioner or 0-19 Health practitioner.
Note, a single sign is unlikely to indicate possible fabrication and the overall picture should be considered
4.1 Alerting signs in the child
- Reported physical, psychological or behavioural symptoms and signs not observed independently in their reported context;
- Unusual (or unexpected in the context) results of medical investigations;
- Inexplicably poor response to prescribed treatment;
- Some characteristics of the child’s illness maybe physiologically impossible (e.g. large blood loss with no fall in haemoglobin (blood count));
- Unexplained impairment of the child’s daily life, including school attendance, aids, social isolation.
4.2 Alerting signs in the carer
- Insistence on continued investigation rather than symptom improvement when the symptoms / signs are not explained by examination and investigation or any known condition in the child;
- Repeated reporting of new symptoms;
- Repeated presentation to and attendance at medical settings including Emergency Departments;
- Inappropriately seeking multiple medical opinions;
- Providing reports from abroad which conflict with UK medical practice;
- Unable 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 alone;
- Talking for the child/child repeated referring or deferring to 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 practitioners 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.
5. Response to Alerting Signs
5.1 Where there is immediate / serious risk to a child’s health / life
This is particularly likely when there has been frank deception, particularly illness induction or interfering with specimen, poisoning or concerns that an open discussion with a carer may lead them to harm the child. In this situation:
An urgent referral must be made to the police and social care as likely harm due to suspected or actual FII. See Making a Referral to Social Care Procedure.
Any potential evidence (e.g. feed bottles, medication, nappies, charts etc) should be secured
Concerns should be documented in the child’s notes in order to ensure that concerns are communicated to other involved professionals (e.g. an unusual symptom reported but not independently observed. There is potential for serious harm to the child).
Consider if the child needs immediate protection (this may be secured most urgently by the police) and any measures needed to reduce risk.
In very rare cases, covert video surveillance may be used as part of a multi-agency decision making and is led by the police
In this situation, parents may not be informed about the referral before a multi-agency strategy meeting is held.
5.2 Alerting Signs with no immediate serious risk to health or lige – Perplexing Presentations (PP)
PP implies that FII may be present
A - Establishing the health and functioning of the child
The possible harm to the child needs to be resolved by establishing the actual state of health of the child
This should be led by the responsible clinician, with advice from the Named Doctor, usually in the secondary and occasionally tertiary centre, with the aim of establishing the current state of health and functioning of the child and to resolve the unexplained and potentially harmful situation for the child. The term PP and the management approach should be explained to the parents (and child as appropriate). Reflecting on the differing perceptions of the child’s health and possible harm at this stage may be very helpful, especially if done at an early stage
If school or another agency identify concerns, the practitioner should explain to the parents that information is required from health to understand the concern. This may be GP, paediatrician or child psychiatrist depending on current involvement – and a referral to a paediatrician via the GP may be appropriate if not already involved. If parents do not agree to the sharing of information, or to access a health assessment, other agencies will need to follow their local safeguarding guidance. For the purpose of this procedure if the response from health is deemed inadequate, other practitioners may contact the Named GP or Named Doctor for Safeguarding Children.
The responsible Paediatric or CAMHS consultant should lead the response, with support and advice from the Named or Designated Doctor and the relevant health safeguarding team.
The child’s state of physical and psychological health and family functioning should be established. The uncertainty around the child’s state of health, the proposed assessment process and the need to obtain information from other caregivers, health provider, education and social care if already involved, and the likelihood of other professional meetings should be explained to the parents. If parents do not agree, their concerns should be explored. Strong objection may indicate a need to refer to Children’s Social Care as the doctor is unable to establish the health and health needs of the child.
The paediatrician may need advice or an opinion from an experienced colleague or a tertiary specialist.
Parents also have a right to a second opinion – the opinion giver should be supplied with all background information to help with forming the opinion and avoiding unnecessary investigation. The seeking of multiple alternative opinion is almost always harmful to the child and may increase concerns about FII.
Consideration should be given to the value of an inpatient admission for direct observation of the child.
- Information should be gathered about the child’s current functioning, including school attendance, attainments, emotional and behavioural state, peer relationships, mobility and use of aids. The need for this should be explained to parents. If the child is home schooled, observation in an alternative placement (e.g. possible hospital admission) should be considered;
- The parents, family functioning, the impact of the child’s difficulties and sources of support (including social media) should be explored;
- The child’s views, worries and anxieties, mood and wishes should be explored with the child alone if possible;
- The responsible consultant should provide signposting advice on where to access more information or support.
B - Professionals meetings
There may need to be one or more professional meetings to gather information and form a consensus view about the child’s state of health. This should include all those involved with the child (including education and social care if involved) and be chaired by the Named doctor (unless involved when an experienced colleague may deputise). Where possible, families should be informed about the meetings and outcomes of the discussion as long as it would not place the child at risk and have the opportunity to contribute to the proposed future plans. Notes should be factual and agreed by all concerned. They may also be shared with carers if appropriate.
The professionals’ meeting/s will need to consider whether all the alerting signs or problems can be explained by one of 3 possibilities:
- A verifiable physical, psychiatric or neuro-developmental condition/s;
- Medically unexplained symptoms coming from the child;
- There are perplexing presentations, but the child will not come to harm as a result.
- The verified diagnoses do not explain all the alerting signs;
- There is actual or likely harm to the child or siblings.
The meeting should also agree:
- Whether further investigations or medical opinions are warranted;
- How the child and family will be supported to function better alongside any remaining symptoms, using a Health and Education Rehabilitation Plan (See Section E - Health and Education Rehabilitation Plan (HERP) below);
- If there is no secondary care paediatric consultant is involved, consideration should 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 sharing the conclusions of the meeting with them and the proposed Health and Education Rehabilitation Plan.
If there is disagreement between health professionals, the Named or Designated Doctor (unless involved clinically) should convene and chair a meeting of health professionals to agree the medical issues. If the Designated Doctor is involved clinically, the Designated Doctor from a neighbouring area may be asked to chair. Where there are concerns about how a healthcare organisation is managing a case, the concerns may be escalated to the Medical Director. Named professionals within provider organisations will have guidelines in this regard and may advise on how to action this if needed.
C - Communication with parents
The Consultant should meet the parents (or those with parental responsibility) together with a colleague (never alone) to explain the implications of the symptoms for the child’s functioning, that genuine symptoms may have no diagnosis, the consensus opinion from the professionals’ meeting– with an acknowledgement that this may differ from previous opinions and may differ from their own views
The Health and Education Rehabilitation Plan should be shared with the carer and child as appropriate
D - Referral to children’s Social Care – if needed at this stage
This depends on
- Whether the parents recognise the harm;
- Whether they can change their beliefs and actions in such a way as to reduce any harm to the child;
- The extent and severity of harm – an immediate referral may not be necessary if the plan is agreed and goals are being achieved satisfactorily. If a referral is made, the reasons should be discussed with the family beforehand and, from a health point of view, the Health and Education Plan must continue;
- A referral may be made if there is concern that not all information is available – particularly if parents do not agree to liaison with other agencies (therefore preventing a holistic assessment of the child). This could include liaison with the GPs who are involved.
Please refer to the Making a Referral to Social Care Procedure
E - Health and Education Rehabilitation Plan (HERP) (Documents Library, Report Forms and Templates)
This will need a coordinated multi-disciplinary approach and negotiation with parents. The plan is led by one agency (usually health) but will involve education and possibly children’s services if open. The plan should rationalise and coordinate further medical care, and should be discussed with the child’s GP. It should also include actions to improve the child’s welfare, education and functioning.)
The plan should continue until the child is restored to optimal health and functioning. Agreement should be reached about who will act as lead professional and how the plan will be reviewed. It is important to guard against any disguised compliance
Unless there is a change of primary caregiver, all children who have a Health and Education Rehabilitation plan will need long term follow up at closure of the plan to be alert to any possible recurrence – education and primary health may be well placed to do this
The child and family should be supported psychologically (whether or not CAMHS are involved) to
- Help the child adjust to a better state of health, using coping strategies and a cognitive behavioural approach;
- Help the child and family construct an account which explains the evolution of the child’s difficulties;
- Explore the carer’s motivations – including anxiety, compassion, beliefs, fulfilment of need and likely changes for the carer when the child’s health improves;
- Consider the need for a referral to adult mental health (to better understand the carer’s actions, to assess for co-existing mental illness (e.g. depression, anxiety, psychosis) or personality disorder and to advise on motivation, prognosis and capacity to change along with appropriate treatment or onward referral).
In Derbyshire (including Derby City), the most appropriate route to obtain a referral would be via the GP to the Sector Psychiatrist.
F - When the Health Education and Rehabilitation plan is not working: Referral to Children’s Social Care
If the plan cannot be negotiated or there is a lack of engagement with the plan, a referral to Children’s Social Care should be made – on the basis of the child’s functioning and/or development being avoidably impaired by the parent’s behaviour and harm now becoming significant.
Please refer to the Making a Referral to Childrens Social Care Procedure
Parents may disagree with the plan through active dispute, requesting unwarranted investigations, seeking further medical opinions, continuing to seek unnecessary or alternative diagnoses, declining the plan, or failure of the rehabilitation process to proceed
The referral should be discussed with the parents and the reason for concern explained.
The referral should include:
- A clear explanation of any verified diagnoses with a clear explanation of any functional limitations for the child;
- Details of the nature of the concerns;
- Description of independent observation of the child’s actual functioning, investigations, medical services involved and the consensus medical and professional view of the child’s health;
- Information given to the parent;
- Help offered to the child and family (including the Health and Education Rehabilitation Plan;
- The parents response;
- Full description of the harm to the child – (physical and emotional abuse, medical physical and emotional neglect).
A chronology of the child’s health and healthcare is not needed at the point of referral to Children’s Social Care, although should be completed at the earliest opportunity by all health organisations who have been involved with the child. A chronology is useful to assist next steps, inform further assessment, and to understand the extent of past reported health problems or to help to evidence significant harm for court proceedings. It should not delay referral, putting the child at ongoing risk. The need and scope for a combined multi-agency chronology should be agreed at the second strategy meeting and prepared in parallel by all organisations who have been involved with the child.
The chronology should be recorded on the approved template in order to allow the chronologies to be easily merged. Please see the Documents Library, Report forms and Templates for the chronology template.
The health practitioner to merge the chronologies will need to be determined either at a meeting of health professionals if held, or at the second strategy meeting (see below). If the template is used correctly for all chronologies, this is a very simple task.
The purpose of the chronology is to build a clear picture of all potentially relevant events in the child’s life, with analysis, to help to make a judgement on the nature and level of risk to the child. A summary and analysis should form part of all chronologies, including the merged chronology.
The analysis should include:
- Proven diagnoses;
- Any important comments by parent or child;
- The carer’s / child’s perception of illness;
- Important discrepancies in reporting and observed health information;
- Recurring patterns of behaviour / presentation;
- Whether the overall situation is likely to meet the threshold of significant harm and why.
The chronology should go back as far as agreed. Where possible, it is important to confirm or refute specific information (e.g. historical diagnoses) and to include that information in the chronology
Key points when writing a chronology:
- Use the chronology template (Documents Library, Report Forms and Templates), this will enable later merging of chronologies into a combined chronology;
- Summarise key information: don’t just replicate the child’s record;
- Pay particular attention to the specific concerns that have been raised about the child;
- Clearly state what has been said, by whom and to whom;
- Record what has been reported or observed;
- Record the source of information (e.g. reported by mother or by practitioner);
- Avoid medically obscure language;
- Where appropriate, condense a large amount of information into a short summary sentence. e.g. John was on the ward between the 1st and 4th June, no diarrhoea was observed;
- Use the comments section on the template to highlight any particular warning signs – (as listed in Section 2);
- Add comments as relevant (e.g. mum presented him with wheeze, no signs seen).
7. Referral to Children’s Social Care
The aim of the referral is to reduce harm to the child and to enable CSC to undertake an assessment to determine whether the significant harm threshold has been met. This should include support for the Health and Education Rehabilitation Plan. In addition, the child will need to be protected from being taken unnecessarily by the parent to health professionals who may be unaware of the context.
If it is felt that the referral may be suggestive of FII / PP but it does not meet the threshold for further assessment by CSC, and the decision is made not to progress the case, the Team Manager must discuss the rationale with the referral and, in most cases, a second strategy meeting must be held (see below)
Where there are reasonable concerns that a child has or is likely to suffer Significant Harm, Children's Social Care will convene a Strategy Meeting in consultation with the Locality Manager / Team. A meeting is advisable when considering this complex form of abuse. See Child Protection Section 47 Enquiries Procedure, Strategy Discussions / Meetings.
In most cases of suspected FII/PP, a second strategy meeting will be required within the next 10 working days to ensure that key professionals that include the child’s paediatrician or CAMHS consultant and in addition a Named or Designated Professional must attend the meeting.
For more complex cases the chair of the strategy meeting may agree to extend the timescale to enable attendance of key practitioners. The location and timing of the meeting should be planned to ensure maximum attendance from the most critical attendees. It may be appropriate for key practitioners to contribute via conference calls.
The Police Risk and Referral Unit must be informed by Children's Social Care, at the earliest opportunity. Any suspected case of fabricated or induced illness may also involve the commission of a crime and the Police will take responsibility for deciding whether or not to initiate a criminal investigation.
Any subsequent meetings requires the involvement of key senior practitioners responsible for the child's welfare. As a minimum this must include Children's Social Care, Police lead paediatrician or CAMHS consultant and support from the Named or Designated Doctor for Safeguarding Children as indicated. The following should be invited as appropriate:
- Paediatric Consultant responsible or recently responsible for the child’s health;
- A senior ward nurse if the child is an in-patient;
- A medical practitioner with expertise in the relevant branch of medicine;
- 0-19 Service;
- Named Nurse for Safeguarding Children for the area the child lives in;
- Any other involved health professional e.g. CAMHS or therapist;
- Staff from education settings;
- Local authority legal adviser.
The strategy meeting should consider:
- Whether the child requires constant professional observation, and if so, whether the carer should be present;
- Which practitioner should act as lead professional to oversee and co-ordinate the medical treatment of the child (to organise the number of specialists and hospital staff the child may be seeing);
- The need to gather information about family members. This should include children who may have died or no longer live with the family;
- The nature and timing of any Police investigations, including analysis of samples and covert surveillance (this will be Police led and co-ordinated);
- The need for expert consultation;
- The need for a merged health chronology and the individual to merge the chronologies;
- Any particular factors, such as the child and family's race, ethnicity, language and special needs which should be taken into account;
- The needs of siblings and other children with whom the alleged abuser has contact;
- The needs of parents or carers;
- Obtaining legal advice over evaluation of the available information (where legal adviser is not present at meeting);
- What information will be shared with the parents, by whom and when, in general, working openly and in partnership with parents unless there is evidence that this would place the child at risk or compromise a police investigation.
Undertaking enquiries into FII / PP can be complex and challenging for practitioners and an individual should not undertake the enquiry in isolation. The strategy meeting should recognise the need to ensure multi-agency co-ordinated working and good supervision.
If at any point there is evidence that the child's symptoms are being fabricated or induced, action may be required to ensure the child's life is not put at risk.
In circumstances where there is concern that a child may be experiencing FII / PP a Children's Social Care Single Assessment should usually be completed in collaboration with the consultant paediatrician responsible for the child's health care.
The outcomes of the Children's Social Care single assessment should be made in consultation with the Consultant Paediatrician and Police with agreement reached regarding what the parents should be told.
Any evidence gathered by Police should be made available to Children's Social Care and other relevant practitioners, to inform discussions and decisions about the child's welfare and contribute to the Section 47 Enquiry and Children's Social Care Single Assessment, unless this would be likely to prejudice criminal proceedings.
Normally the Police, rather than practitioners from other agencies, are responsible for questioning a person in connection with a suspected criminal offence and this would be usual in cases of FII/ PP.
As with all Section 47 Enquiries, the outcome may be that concerns are not substantiated - for example tests may identify a medical condition, which explains the signs and symptoms and no protective action is required. In this case the family should be provided with the opportunity to discuss what further help it may require.
Concerns may be substantiated, but an assessment made that the child is not judged to be at continuing risk of harm. The decision not to proceed to an Initial Child Protection Conference must be endorsed by the team manager.
Where concerns are substantiated and the child judged to be suffering or at risk of suffering significant harm, an Initial Child Protection Conference must be convened.
The Initial Child Protection Conference should be held within 15 working days from the last strategy meeting. This meeting requires the involvement of key practitioners responsible for the child's welfare. At a minimum this must include Children's Social Care, Police, GP and the Paediatric Consultant responsible for the child's health.
Attendance should be as for other Initial Child Protection Conferences, with the attendance by the following specialists facilitated and prioritised as far as possible:
- Practitioners with expertise in working with children in whom illness is fabricated or induced and their families;
- Paediatrician able to present the medical findings.
Young people age 16 and 17 years old with medically unexplained symptoms, functional disorders or where there are concerns about PP or FII will need careful transition to adult services within health, to ensure that their needs continue to be met, with robust information sharing, including the GP. Young people with capacity should be empowered to make informed decisions about their own health and treatment.
9. Record Keeping
Records of key discussions and concerns should be included in the organisations main record, with flags to cross reference information if there are separate records elsewhere. Minutes of meetings should be agreed by all parties and emails from practitioners, parents or children should be stored in the main record. Correspondence should be copied to all health providers. Subject access requests by carers are not uncommon in this situation and are easier to manage if there has been open communication with carers. Legal advice may be needed in respect of any material to be withheld, in view of any concerns about the child’s welfare.
10. Management Oversight and Support
This work is often very challenging for practitioners and support and supervision is essential. Each agency should have a supervisory system in place that is accessible to the professional and reflects practice needs.
Supervision discussions should focus on areas of difficulty being experienced by practitioners or anticipated by them in working with families and should address the impact on the professional and the impact on the work with the family.
Managers should encourage a culture of openness, where their professionals are aware of the support available within the team and aware of the welfare services available to them within their agency. Managers must ensure that staff members feel comfortable in asking for this support when they need it. This includes ensuring a culture that accepts no intimidation from service users or colleagues.Discussion in supervision should examine whether the behaviour of the service user is preventing work being effectively carried out. It should focus on the risk factors for the child and the impact on their wellbeing. Once concerns about FII /PP have been raised, at all stages, the Named Health Practitioner in the practitioner’s organisation or the Designated Health Professional should be available to provide support. The Named Nurse for the area in which the child lives, should be fully involved.
If differences of opinion exist between practitioners or agencies regarding the management of possible FII/PP, the Derby and Derbyshire Multi Agency Dispute Resolution and Escalation Policy (Documents Library, Guidance Documents) should be followed.
If the response from health is felt to be inadequate, other agencies may contact the Named GP, Named Doctor or Designated Doctor for Safeguarding children for the relevant organisation for further advice. If necessary, the matter maybe escalated to the Medical Director of the organisation concerned.
Occasionally, in this area of work, collusive and unprofessional relationships can develop between carers and practitioners. This should be addressed through the relevant managers / lead practitioners.
For further information please see Perplexing Presentations(PP) / Fabricated or Induced Illness (FII) in children: (Royal College of Paediatrics and Child Health guidance 2021).