Medically unexplained symptoms

Child protection, General paediatrics

Royal College of Psychiatrists and Paediatric Mental Health Association guidance on MUS – https://www.rcpsych.ac.uk/mental-health/problems-disorders/medically-unexplained-symptoms

Perplexing presentations (PP) – term is used to describe the presence of alerting signs when the actual state of the child’s physical or mental health is not yet clear and there is no perceived risk of immediate serious harm to the child’s physical health or life.

Cf Factitious or Induced Illness (FII, prev Munchausen by Proxy) –

  • Mostly associated with the mother
  • extreme end of spectrum of abnormal parenting behaviours, from ‘mild’ erroneous belief or overanxiety at one end, through manipulative fabrication to ‘severe’ imminently dangerous induction of illness at the other end.
  • Danger that effect on the child underestimated.
  • Even milder abnormal parental behaviours creates difficult relationships between family and health professionals

Features of FII

  • Unwitnessed, or at least, not independently observed
  • Poor response to treatment
  • Unexplained impairment esp school but also social
  • New symptoms, and multiple opinions sought; yet frequent WNB
  • Changes of school/clinician, complaints and demands.  Home schooled often – which also makes it harder to get independent observations

But these features are only to raise suspicion, not diagnostic! RCPCH has guidance.

Is there a risk of harm? If in doubt, discuss early with safeguarding team, rather than trying to decide alone on whether to involve  social services.

Offer a “current consensus opinion” together with at least one other professional, and ideally input from education/nursery! Continue to monitor until things improving.  No right to access parental health records however –would need explicit consent.

Chronology needs to include basis of previous diagnoses, and justification

Admission for observation – some special issues:

  • What should nursing staff be looking for?
  • Is 24/7 supervision required or possible? Can they leave the ward?
  • Where do you keep notes?

Second opinions – for specific issues, and ONLY TO HELP YOU manage the child. And necessary to provide background of concerns.

Discussing with family –

  • Bringing father, and child’s own views, into the picture helpful.  Child often defers to mother in these cases [presumably as their views are ignored]
  • reassure the parents that there is no current health concern, but emphasise that the team can/will still support and manage any condition the child has

Truancy and going missing as risk factors for sexual exploitation. Experience of conflict, threat and violence – so dealing with these as protective, along with access to safe, stable accommodation, increasing awareness of rights

Acutely – toxicology, parental responsibility, local sexual assault referral centre (SARC – but don’t wait on them), specialist police (good if hesitant). emergency contraception, post-exposure prophylaxis (PEP) incl hepatitis B vaccination.  Advice from the sexual offences examiner (SOE) or forensic medical examiner (FME).  Document if unable to get consent.

Forensics – urine samples, toilet tissue used during the admission, clothing at the time of presentation, underwear and any sanitary wear. Option for self referral for forensic exam (13+yrs) where police are not required.

General paediatrician may be required to get involved with sexual offences examiner, with view to paediatric history, consent issues, referring to social services and/or psychological support

Police protection (which can involve transport to secure location) does not confer right to consent to treatment – needs emergency protection order.

Up to 18 in some respects – Children’s act 1989 defines child as under 18.

Neglect

Child protection, General paediatrics

Type of abuse.

Neglect is not always easily recognisable in children and young people with disabilities – demonstrate emotional distress in different ways; for example, through repetitive or challenging behaviours and self-injurious or self-harming behaviours.

Usually involve neglect across not just health issues but other domains eg hygiene, stimulation, appropriate clothing, protection from harm.

If in doubt, the graded care profile (GCP) tool can help to assess the severity of neglect.

Child protection

Child protection, General paediatrics

Abusive head trauma is the most common cause of traumatic death in infants and can cause severe neurodevelopmental delay, hearing and speech problems, impaired vision and blindness in surviving infants.

Severe faltering growth is associated with neglect. During the first 2 years, a child’s brain grows rapidly, and even moderate nutritional deprivation during this period of rapid brain growth and differentiation can lead to adverse neurodevelopmental outcomes.

Neglect is associated with developmental delay, particularly delays in expressive language and imaginative play.

Several studies have reported associations between child maltreatment and ischaemic heart disease, chronic lung disease and liver disease in adulthood.

Those who have been maltreated as children are more likely to engage in smoking, drinking alcohol and engaging in risky behaviour which can give rise to physical health problems.

Child abuse is also strongly associated with obesity in later life.

Self-harm is strongly associated with sexual abuse, although not necessarily with physical abuse and neglect.

Physical abuse and sexual abuse are both associated with a doubling of the suicide risk for young people.

Children who have been physically or sexually abused are also more likely to experience intimate partner violence as adults.

Peter Connelly (also known as ‘Baby P’)

Peter died at the age of 17 months with multiple injuries including rib fractures and a fracture-dislocation of the thoracolumbar spine.

The inquiry into Peter’s death identified numerous opportunities where health and other professionals could have intervened to protect him from harm.

Training requirements

Over a 3-year period, professionals should be able to demonstrate refresher education, training and learning equivalent to:

  • a minimum of 8 hours for those requiring Level 3 core knowledge, skills and competencies
  • a minimum of 12 to 16 hours for those requiring role-specific additional knowledge, skills and competencies
  • multidisciplinary and interagency and delivered internally and externally.

It should include personal reflection and scenario-based discussion, drawing on case studies, child safeguarding practice reviews (local and national) and the lessons learned from research and audit.

Protective factors

  • Social support for mothers, safe play areas, at least one secure attachment
  • adequate income and good quality housing
  • good nutrition
  • safe play areas and appropriate learning materials
  • good quality day care (developmentally appropriate, skilled staff, attention to non-educational needs, parental engagement)
  • academic socialisation (school readiness programmes)
  • links with other adults and community networks good antenatal care have been found to promote resilience

Deaths

Child Safeguarding Practice Reviews or CSPRs (previously known as Serious Case Reviews or SCRs).

SIDS = sudden death of an infant under one year of age that remains unexplained after a thorough case investigation, including the performance of a complete autopsy, examination of the death scene and review of the clinical history

Livedo only becomes permanent around 4 hours after death, so if the infant is moved in this time period, and the livido not recorded, this information may be lost. Other marks such as those from strangulation may also fade.

Test should be down before declaration of death!

  • amino acids, newborn blood spot test, toxicology and cytogenetics
  • CSF
  • Urine (from nappy if necessary)
  • Skin biopsy for fibroblast culture

For deaths at home/community, senior police and healthcare should decide on whether there should be a visit, how soon (within 24hrs),who should attend. Routine for sudden infant death.

All child deaths in England are reviewed by a child death overview panel (CDOP) established by the local safeguarding children partnership (LSCP).

In the UK, an estimated 1 to 2 children die per week as a result of maltreatment.

National Case Review Repository website – for details of how review should be done

Purpose is establish what lessons are to be learned from a case to safeguard and promote the welfare of children

Wider cultural factors associated with increased risk include:

  • attitudes towards parental responsibility
  • attitudes towards rights of the child
  • attitudes towards violence and crime

Mental health professionals, addiction services and learning disability services  working with adults  (as well as probation, social care and police) have a duty to consider the welfare of any children dependent on those adults.

Writing Medical Reports

When writing a medical report:

  • avoid medical terms wherever possible and use common English
  • if medical terms are required, attempt to provide the common English term as well
  • conclude by stating whether the injury is consistent with the explanation provided
  • if no explanation is provided, outline the most likely explanation (where possible)

ACEs

Abuse and neglect obviously, but also family dysfunction eg divorce/separation, domestic abuse, drug/alcohol misuse.

67% of people have experienced at least one.  10% have experienced 4+

Increased risk of physical ill health – dysregulated stress? Plus unhealthy coping behaviours, of course. 

Online abuse

NSPCC (Childline) for family advice.  MindEd.org.uk https://www.minded.org.uk/Catalogue/Index?HierarchyId=0_45158_45175_45180&programmeId=45158

Report concerns to Internet watch foundation and CEOP https://www.ceop.police.uk/Safety-Centre/

Trafficking

Expensive clothes/phones?? Tattoos and specific colours can be associated with gangs.

What is the quality of the relationship with the accompanying adult?

Modern Slavery and NSPCC have helplines.

County lines = mobile phone numbers used to take drug orders. Children may be used to transport money or drugs, often across geographical boundaries. Common for properties (typically belonging to vulnerable people) to be used as bases for criminal activity.           

Financial security at home can drive attempts to get involved with activities perceived as “profitable”       

“Trauma informed care”???

LAAC

Residence orders, or guardianship order (to do with fostering), or long term placements with foster carers, take a child out of care system.

Placement order is for prospective adopter – gives rights

Information about the birth parents can be obtained without consent (for example, if it is not possible to trace a birth parent), if information is anonymised as far as possible to serve the intended purpose. [General Medical Council guidance on confidentiality] 

Unaccompanied asylum seekers –

  • hearing issues (potentially trauma-related)
  • dental and vision issues (never checked)
  • haemoglobinopathies (never screened)
  • immunisations (uncertain or incomplete)
  • malnutrition or growth issues
  • worms
  • tuberculosis or blood-borne viruses
  • female genital mutilation
  • issues with emotional health and wellbeing (these may be ongoing if still going through the asylum process)

RCPCH has guidance, as does UASChealth.org and refugee council.

Section 20 agreement is for voluntary fostering – does not give local authority parental responsibility

Foster parents do not usually have parental responsibility. 

Attachment affects positive vs negative inner working models.

Survival behaviours – lying, hypervigilance, hoarding/stealing, attention seeking

Screen time

estimates suggest that 11 to 14 year olds in the UK have an average daily screen time of 9 hours – [no idea where this comes from.  Self reporting is obviously pretty meaningless.  Lots of evidence of screen time going up post COVID esp girls, esp lower educational attainment]

Rights based participation

Ethics, Generic

UNCRC report June 2023 -Scotland should prioritise non-discrimination, abuse/neglect/sexual exploitation, children “deprived of family environement”, mental health, asylum seeking and refugee/migrant children.

Should develop/strengthen strategies for community based therapeutic mental health programmes for children of all ages, mental health promotion, screening and early intervention.

Benefits to children are not the point – just a human right, under article 12.

Right of individual child but also of groups of children.

Voice is not enough (2007) – Lundy Model:

  • Space – to form/express views safely
  • Voice – facilitated to express veiws
  • Audience – views should be listened to
  • Influence – views must be acted upon as appropriate

Space – actively created! Not just reactive. And demonstrably safe. Consider the “seldom heard” child eg talking mats.

Voice – silence can be clear in meaning! Mode of expression? And support to understand options, possibilities. Lundy has published European commission guide to creating child-friendly documents

Subjects that are uncomfortable/awkward in particular – how can they be framed in way that can be discussed openly?

Audience – active listening. Relevant decision makers.

Influence – High expectations are good! But transparent about what is possible. Feedback and follow up.

Framework for feedback:

  • What did you agree with?
  • What if anything surprised you and why?
  • Did you disagree with anything? If so, what and why?
  • Has it influenced your views in any way? If so, how?
  • What have you decided?
  • What is happening next and when?

NI government has evaluation checklist and CYP feedback form.

Talking Mats – Margo

Structured visual communication – real or virtual world. Used for 2020 “Can Scotland be Brave?” report

Jones and Welch 2018 – representation (avoiding adult bias), judgement (viewing children as capable of making informed decisions), validity (even if different from adult views), Impact (how acted on)

What we think is “fine” because it’s what we are used to may not be for kids – eg hospitals/clinics.

Who all is in the room? Why are they there?

Beware leading questions

Before training, only 23% felt confident that CYP views were represented, rose to 89% after. Feedback from children was overwhelmingly “just nice to be listened to”.

Trust in organisations

Ethics, Generic

“Boeing in 2018/9 after the crashes of two 737 Max 8 aircraft was
following a popular playbook:

  • First, deny any problem; then
  • sow doubt about claims that your products or practices cause harm.
  • Once the problem becomes undeniable, endeavor to deflect responsibility for the problem,
  • when deflection is no longer tenable, try to minimize or localize the problem eg blame lower-level employees”

Gives other examples of George W. Bush and Abu Ghraib camp (abuse attributed to
“a few American troops”).

Purdue Pharma – in response to  public criticism and lawsuits for its irresponsible opioid marketing strategy – tried to be seen as part of the solution rather than the cause of the problem.

Trust is based on perceptions of that institution; in contrast, trustworthiness is a quality we attribute. Trying to boost trust without addressing underlying reasons for the loss of trustworthiness are unlikely to succeed, and usually perceived as inauthentic.

You can measure trust (by asking people about their perceptions and beliefs) but not trustworthiness, which is more nebulous. 

We tend to talk about trust as being a one dimensional thing but there are probably different kinds of trust – (gives example of a successful financial advisor who has had multiple divorces – you might trust them for financial but not relationship advice). Do they have knowledge, skills, resources (often quite specific) to perform what you have entrusted them to do?

Trustworthiness on the other hand is built around questions of reliability, honesty, and integrity. If you have reliability trust in someone, then you believe that person does (or will do) what they say they do (or
will do).

Along with integrity, there are the values of fidelity, care, and benevolence—relates to putting others’ interests ahead of one’s own. Which raises the question, “whose interests are being privileged?”

So called crisis management experts talk about “optics” – public perception – and respond to it by “public performativity” of trust building in terms of use of language and symbolic actions.

Marks suggests you compare one kind of crisis he calls “opsis,” (ancient Greek word for “appearance” as used by Aristotle for one of his six elements of tragedy, often translated as “spectacle”) with institutional sepsis. “Just as medical sepsis in the human body is a critical condition that endangers life, the loss of an
institution’s integrity and trustworthiness is another form of sepsis—ethical sepsis—that poses an existential threat to the institution. A problem even when the loss of integrity and trustworthiness has not yet come to the attention of the public.

Gives vaccine hesitancy as another example – numerous and varied causes, including misinformation, but note strong ethnic patterns at time of Black Lives Matter campaign and NHS being called “institutionally racist”. Suspicion of corporate interests in public health messages too.

[Jonathan H. Marks, Hastings Centre]

Keeping up to date

Generic, Teaching and training

Years ago it was already pointed out that there is way too much published research for the average doctor to keep up to date. Even to just be aware of all the guidelines that summarize research into best practice means reading hundreds of pages for the conditions that you might only infrequently see.

Of course you don’t always know if the patient in front of you is typical of the condition being discussed – research often excludes complicated cases (or children, or pregnant women).

Even then – “most published research findings are false” [Ioannidis, Plos 2005].  Lots of findings are never confirmed by further studies, and “knowledge” is based on a p value of <0.05. Actually depends on pre-test probability… Are certain things already known? Or is there just a lot of data without established relationships? Even if research design is perfect, bias eg selective reporting or manipulation of analysis. Different studies may use different end points or definitions, which increases the chance findings are false. True findings can be lost in noise or concealed by conflict of interest. Fixed beliefs may be as prejudicial as financial conflict of interest… Expert opinion often differs from outcomes of metanalysis. Small studies and small effects mean any significant result is more likely to be false.

In the model discussed in this study, an underpowered early phase clinical trial that produces a positive finding is likely to be misleading 75% of the time, even before you consider bias. If you are talking about a field where there probably isn’t actually any relationship between the things being studied, then large effects with high significance may just reflect the degree of bias, and should be seen potentially as a warning rather than something exciting!

Authors don’t check primary sources so misconceptions promulgate. Peer review is inefficient, inconsistent and insufficient. Post publication retractions are messy and difficult. See the problem of citations, below.

Systematic reviews are not kept up to date – in fact, they are usually already out of date when published… 

Authors of guidelines have a particular duty to ensure rigorous analysis. 

The average 10 min consultation will produce at least 1 unanswered question. 

[Richard Smith BMJ 2010]

The problem of citations

Citation error rate is estimated at 11-15% in biomedical literature. Propagates mistakes (even academic urban legends eg iron in spinach, due to a misplaced decimal point in a 1930s paper, which I have not verified) and undermines respect for literature review. 

Can be non-existent findings, incorrect interpretations of findings, or (20% of errors) chains of errors. Sometimes a hypothesis becomes a fact. 

1 surgical study was found to be misquoted by 40% of articles that cited it!

AI can help or make this worse. CONSENSUS.app is AI powered search engine for academics. 

Best would be a declaration, that the authors have read the original papers and checked for accuracy and relevance.

Critical Appraisal

Tools available (both of these from Oxford!), different ones for systematic reviews, diagnostic methods, prognosis, RCTs, qualitative etc:

Laryngomalacia

Clinical, General paediatrics, Respiratory

Intermittent squeaky inspiratory noise from collapsing larynx during respiration. Usually from birth.

Often worse when lying on back, or with colds, or with reflux (vomits).  Worse if hypognathia eg Pierre-Robin sequence.

Clinical diagnosis usually. Settles in first few months of life.

Will need intervention if significantly increased work of breathing, cyanosis or apnoeas, or growth failure.

Juvenile xanthogranuloma

Dermatology, General paediatrics

Well circumscribed, raised yellow/brown firm papule or nodule, typically solitary. Can be congenital but otherwise typically very young boys, head and neck area, asymptomatic.

Can affect the iris – presents with a red eye…

Can ulcerate, otherwise they tend to atrophy and disappear after 3-6 years.

Seen in 10% of Neurofibromatosis type 1.

Can rarely be multiple and internal (liver, bone marrow etc). Screening of asymptomatic cases probably only justified if multiple.

Differential – mastocytoma, Langerhans histiocytosis, molluscum.

Moral Distress

Ethics, Generic

Moral distress – when you feel an internal moral compulsion to act a certain way but cannot do so because of external constraints. Your morals are usually guided by ethical principles, such as beneficence and autonomy, as well as by professional virtues. Moral injury is the result of repeated experiences in which individuals act or witness actions by others that are incongruous with their moral beliefs.

The negative emotional consequences of moral distress and moral injury are depression, decreased quality of life, and burnout.

Examples are where organisational or legal rules restrict clinical practice – eg access to abortion in the US being restricted after Dobbs vs Jackson Women’s health organisation decision.

One way of dealing with moral distress is to continue practicing the professional virtues of integrity, compassion, self–effacement, self-sacrifice, and humility while maintaining patients’ best interests.

Self-effacement and self-sacrifice are the virtues that say that your wishes/feelings may need to come second to some greater good. May be uncomfortable, but doesn’t mean you are doing wrong.

Humility is the idea that what you think/believe isn’t necessarily right, and certainly won’t be right for everyone. So acting against your own morals is sometimes necessary when you are taking into account other people’s views.

Discussing these issues and feelings with colleagues will always help. Seniors should promote and cultivate a positive culture where less experienced feel able to talk openly about their feelings and identify their moral distress, frustration, and outrage without fear. Professionalism means inviting others to listen and being willing to speak openly about the constraints of practice.

Ultimately, the ideal would be compassion but without overidentification with or indifference to our patients’ plight. This is of course harder for those who may have experienced discrimination (lower socioeconomic groups, women, and racial or ethnic groups historically underrepresented).

DOI: 10.1097/ACM.0000000000005476