Suspected Cancer in Children and Young People (NG12)

Safety

The NG12 Action Levels — Know the Exact Timeframes

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Current NICE NG12 (verify against the live NICE page and revision history) attaches a specific timeframe to each action. Learn these levels — every feature below maps to one of them. NG12 uses "children" for under-16s and "young people" for 16–24s; young people may be referred through children's or adult services depending on age and local arrangements.

Immediate

An acute admission or referral within a few hours, or sooner if necessary — for the child who may have acute leukaemia, or the child with a new squint and loss of the red reflex. This does not mean every child needs a 999 ambulance — 999 only if critically unwell.

Very urgent

Appointment or test within 48 hours — the workhorse level in children: very urgent FBC, very urgent specialist appointment, or very urgent direct-access X-ray or ultrasound. A very urgent test is not automatic same-day admission if the child is well, but needs an explicit process for reviewing and acting on the result. Do not use "very urgent" and "immediate" interchangeably.

Suspected cancer pathway

The former "2-week-wait" route, now aligned to the Faster Diagnosis Standard (cancer diagnosed or ruled out within 28 days) — e.g. absent fundal ("red") reflex → ophthalmology.

Other action

A specific test, a non-urgent referral, or "consider referral" (such as persistent parental concern), with safety-netting and review.

Unexplained petechiae → Immediate Immediate specialist assessment for leukaemia — do not wait for a routine FBC. With fever, toxic appearance, altered consciousness, shock or rapidly progressive rash → manage as suspected serious infection/sepsis and call 999. Petechiae with a clear mechanical cause (e.g. coughing/vomiting) or a local distribution need a different assessment.

Unexplained hepatosplenomegaly → Immediate Immediate specialist assessment for leukaemia.

New squint with loss of red reflex or neurological abnormality → Immediate Immediate referral to ophthalmology (NICE NG127, suspected neurological conditions).

Systemically unwell child Toxic, septic-looking, reduced consciousness, respiratory distress or airway compromise (possible mediastinal mass), new-onset seizure or signs of raised intracranial pressure, acute severe pain with haemodynamic or neurological compromise → emergency admission (999 / A&E), not an outpatient pathway. Petechiae with fever may be meningococcal sepsis as well as leukaemia.

The whole value of NG12 in children is the timeframe attached to each action — "refer" without "within 48 hours" is too slow for diseases that can progress in days. Petechiae or hepatosplenomegaly carry a high enough leukaemia risk that NG12 escalates them past the 48-hour FBC straight to immediate assessment. Notice how much tighter the children's recommendations are than the adult ones: most childhood actions are very urgent (48 hours), where most adult actions are suspected cancer pathway referrals. In October 2023 the NG12 update aligned the suspected cancer pathway with NHS England's Faster Diagnosis Standard, so the old "2-week-wait" label is now shorthand rather than the formal definition.

Assess

Focused History and Examination of the Worrying Child

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History

Duration and progression; persistent / unexplained features (the NG12 keywords) — morning vomiting or headache, bone pain waking at night, limp, weight loss, night sweats, fatigue, recurrent infection, easy bruising or bleeding; parental concern and the number of prior presentations for the same problem.

Examination — always

Plot growth and (under-2s) head circumference; temperature; full skin (petechiae, bruising, pallor); lymph nodes (site, size, generalised?); abdomen (mass, hepatosplenomegaly — palpate gently and not repeatedly); eyes (red reflex, squint, proptosis, visual behaviour); neuro (gait, coordination, cerebellar signs, cranial nerves, fundi); bones and joints (swelling, focal tenderness); blood pressure if an abdominal/renal tumour is possible.

"Unexplained" = act

NG12 hinges on unexplained and persistent — a feature with no clear benign cause triggers the relevant action level, not reassurance.

Background risk

Down syndrome (higher leukaemia risk), neurofibromatosis type 1, Li–Fraumeni, previous cancer treatment, family history of retinoblastoma, immunodeficiency.

Teenagers and young adults

Young people often present late, alone or after several consultations. Lymphomas, bone sarcomas, testicular germ cell tumours, brain tumours and melanoma all feature in this age group, and for 16–24-year-olds use the local teenage and young adult pathway: depending on age, diagnosis and local arrangements, referral may be through paediatric, teenage and young adult, or adult services — do not assume an adult suspected cancer pathway is always the correct route. Offer confidential time without parents/carers; ask directly about weight loss, night sweats, lumps, bone pain, testicular symptoms, sexual health, substance use and mental health; and consider the young person's ability to access appointments and understand safety-netting.

Safeguarding lens

Unexplained bruising or petechiae raise both leukaemia and non-accidental injury — an FBC and clotting are part of either pathway; do not let one explanation close off the other.

Systemically unwell

A toxic, septic-looking child or one with reduced consciousness needs emergency admission, not an outpatient pathway.

Childhood cancers hide behind common, non-specific symptoms, so the protective step is a complete, structured examination of every worrying child — skin, nodes, abdomen, eyes, bones and neurology — because the discriminating sign (petechiae, an abdominal mass, an absent red reflex, cerebellar signs) is often found only when specifically sought. The words "unexplained" and "persistent" are the NG12 triggers: a feature without a clear benign explanation is what converts a routine review into a timed referral. Background conditions such as Down syndrome or NF1 raise the prior probability, and bruising always needs a dual lens — haematological and safeguarding — because both can be missed if the first explanation is accepted too quickly.

Leukaemia

Leukaemia — Immediate vs Very Urgent FBC (48h)

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Leukaemia is the commonest childhood cancer — around 3 in 10 cases in UK children (Cancer Research UK). NG12 splits features into immediate referral vs a very urgent FBC within 48 hours.

Immediate referral

Unexplained petechiae or hepatosplenomegaly → immediate specialist assessment (don't wait for the FBC).

FBC ≤48h Pallor

→ very urgent FBC within 48 hours.

FBC ≤48h Persistent fatigue

→ FBC within 48h.

FBC ≤48h Unexplained fever

→ FBC within 48h.

FBC ≤48h Unexplained persistent infections

→ FBC within 48h.

FBC ≤48h Generalised lymphadenopathy

→ FBC within 48h.

FBC ≤48h Unexplained bruising or bleeding

→ very urgent FBC within 48h (in an otherwise well child — not automatic immediate admission).

FBC ≤48h Persistent or unexplained bone pain

→ FBC within 48h (± X-ray, Step 6).

Blood film

Request an urgent FBC with differential. Add a blood film where leukaemia, marrow failure, blasts, dysplasia or another haematological abnormality is suspected, and clearly state the clinical concern on the request. Follow the local laboratory protocol for urgent review.

Acting on the result

Blasts, pancytopenia, severe cytopenias, a markedly abnormal or falling count, abnormal blood-film findings, or a clinically unwell child → discuss the same day with paediatrics/haematology. Mild isolated abnormalities in a well child: interpret with the laboratory, clinical context and trend. Actively review the result within the timeframe and tell the family how and when they will hear. A normal FBC reduces the likelihood of leukaemia but does not completely exclude malignancy — if concern persists, reassess and discuss rather than repeating FBCs indefinitely.

The FBC (with a film where indicated) is fast, accessible and high-yield, so NG12 uses it as the 48-hour gate for most leukaemia features. Many of these symptoms overlap with viral illness — the trigger is being unexplained or persistent. Petechiae and hepatosplenomegaly skip the test because their predictive value is high enough to warrant immediate assessment. Bone pain is a classic early leukaemia symptom in young children and is often mistaken for "growing pains" or a limp after minor trauma; night pain, refusal to walk and pallor together should prompt a very urgent FBC within 48 hours. Early leukaemia can have a near-normal count, which is why persisting concern overrides a reassuring result.

Brain / CNS

Brain and CNS Tumours — Very Urgent (48h) · HeadSmart

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Brain, spinal and other CNS tumours account for around 2 in 10 childhood cancers (Cancer Research UK) and are the commonest solid tumours. NG12: consider a very urgent referral (appointment within 48 hours) for newly abnormal cerebellar or other central neurological function.

Refer ≤48h Newly abnormal neuro exam

New cerebellar signs (ataxia, nystagmus, intention tremor) or other new central neurological abnormality → consider a very urgent referral within 48 hours.

HeadSmart headache features (supporting guidance, not NG12)

Persistent headache that wakes the child, or is present on waking; persistent headache in a young child; persistent headache with any other brain tumour symptom → discuss or refer via the local paediatric/neuroimaging pathway (HeadSmart supporting guidance, endorsed by RCPCH). The action depends on the whole presentation, age and neurological examination — primary care should not independently arrange brain imaging for every child with persistent headache.

HeadSmart other features (supporting guidance)

Persistent nausea or vomiting, especially on waking; visual symptoms (reduced acuity, new squint, abnormal eye movements, papilloedema); motor symptoms (abnormal gait, balance or coordination); increasing head circumference; growth or endocrine problems; behavioural change.

By age

Infants: increasing head circumference, bulging fontanelle, developmental regression, vomiting. School-age: headache, visual problems, clumsiness, falling school performance.

Action

Low threshold — discuss or refer urgently via the local paediatric pathway. Immediate/emergency assessment for reduced consciousness, new-onset seizure, signs of raised intracranial pressure, focal neurological deficit, rapidly progressive symptoms, persistent morning headache with vomiting or other neurological features, or a bulging fontanelle or developmental regression in an infant. HeadSmart imaging timeframes are supporting guidance, not NG12 timeframes.

Childhood brain tumours are notoriously slow to diagnose because early signs are subtle and intermittent. The HeadSmart guideline — developed by the Children's Brain Tumour Research Centre in Nottingham and endorsed by the RCPCH — lists symptom patterns that should prompt assessment and consideration of imaging (supporting guidance rather than an NG12 timeframe), and its national awareness campaign was associated with faster diagnosis in UK children (Neuro-Oncology 2016). NG12's 48-hour referral for newly abnormal cerebellar or central neurological function exists to compress delay further: a new neurological sign is never "wait and see". Plotting head circumference and growth, and checking eye movements, fundi and gait, are the examination steps most often missed.

Abdominal

Neuroblastoma, Wilms' and Retinoblastoma

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Refer ≤48h Abdominal mass / enlarged organ

Palpable abdominal mass or unexplained enlarged abdominal organ → consider a very urgent referral within 48 hours for neuroblastoma or Wilms' tumour. Examine gently once; avoid repeated deep palpation. Check blood pressure. Do not delay referral for primary-care imaging unless this is part of the local agreed pathway.

Refer ≤48h Visible haematuria

Unexplained visible haematuria → consider a very urgent referral within 48h (Wilms' tumour). Confirm with urine testing, but do not let this delay urgent referral when concern is high.

Other neuroblastoma clues

Clinical practice, not NG12 criteria: periorbital bruising or proptosis ("panda eyes" without trauma), bone pain, limp, pallor, irritability, unexplained fever or weight loss in a young child, a hard mass in the neck, or opsoclonus-myoclonus → discuss urgently with paediatrics.

Suspected cancer pathway Absent fundal ("red") reflex

An absent or abnormal fundal reflex is an urgent ophthalmological finding (retinoblastoma, cataract or another ocular disorder) → consider a suspected cancer pathway referral to ophthalmology (NG12) via the local ophthalmology route. The NG12 wording changed in 2024 because the reflex can appear a different colour in children with darker skin.

Immediate New squint + loss of red reflex

New-onset squint with loss of the red reflex in one or both eyes, or with neurological abnormalities → immediate specialist assessment (NICE NG127).

White pupil in photographs

A parent reporting a white or "cat's eye" reflection in flash photos is a leucocoria history — this requires urgent assessment even if the child appears well; examine the red reflex and refer.

An abdominal mass in a young child is a Wilms' tumour or neuroblastoma until proven otherwise; examination is gentle because a Wilms' tumour is fragile. Retinoblastoma is the classic absent-red-reflex diagnosis — sight- and life-threatening but highly curable when caught early. NG12 routes an absent fundal reflex through the suspected cancer pathway, while NG127 escalates a new squint with loss of the red reflex to immediate referral because of the risk of rapid progression. Parents often notice the white reflex in photographs before any professional does, which is why a history of an odd eye appearance in pictures deserves a proper look with the ophthalmoscope.

Lymphoma / Sarcoma

Lymphoma and Bone / Soft-Tissue Sarcoma

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Refer ≤48h Hodgkin lymphoma

Unexplained lymphadenopathy → consider a very urgent referral within 48 hours. When deciding, take into account fever, night sweats, shortness of breath, pruritus or weight loss.

Refer ≤48h Non-Hodgkin lymphoma

Unexplained lymphadenopathy or splenomegaly → consider a very urgent referral within 48 hours, taking the same associated symptoms into account.

Reactive nodes

Small, soft, mobile, tender nodes associated with a clear local infection can usually be reviewed clinically. Refer urgently if nodes are persistent, progressive, hard, fixed, supraclavicular, generalised, associated with hepatosplenomegaly, or accompanied by fever, night sweats, weight loss, pruritus, breathlessness or other concerning features (CCLG supporting guidance; the local paediatric pathway determines the route).

X-ray ≤48h Bone sarcoma

Unexplained bone swelling or bone pain → consider a very urgent direct-access X-ray within 48 hours (osteosarcoma, Ewing's sarcoma). Features: persistent focal pain, pain at rest or at night, local swelling or tenderness, unexplained limp, pathological fracture, pain not explained by trauma or a benign musculoskeletal cause.

Refer ≤48h If X-ray abnormal

X-ray suggests possible bone sarcoma, or is indeterminate with continuing clinical concern → consider a very urgent referral for specialist assessment within 48 hours. Do not reassure solely on an initially normal X-ray if symptoms persist or progress.

USS ≤48h Soft-tissue sarcoma

Unexplained lump increasing in size → consider a very urgent direct-access ultrasound within 48 hours; consider a very urgent referral (≤48h) if the scan suggests sarcoma, or is uncertain and clinical concern persists.

NG12 does not require systemic symptoms before a child with unexplained lymphadenopathy is referred — fever, night sweats, breathlessness, itch and weight loss are things to weigh, not a threshold to meet. Breathlessness matters especially because a mediastinal mass can compromise the airway, so a child with nodes and new respiratory symptoms needs same-day assessment. "Growing pains" and minor trauma are the traps for bone sarcoma: unexplained or persistent bone pain or swelling earns a 48-hour X-ray, not reassurance, and a normal X-ray does not end the story if pain persists. An enlarging unexplained soft-tissue lump warrants ultrasound within 48 hours; persistent clinical concern overrides an uncertain scan.

Investigate

Direct-Access Investigations and Acting on Results

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FBC ≤48h

Pallor, persistent fatigue, unexplained fever, unexplained persistent infections, generalised lymphadenopathy, persistent or unexplained bone pain, unexplained bruising or bleeding → very urgent FBC (with differential; film where indicated) within 48 hours for leukaemia.

X-ray ≤48h

Unexplained bone pain or swelling → very urgent direct-access X-ray within 48 hours.

USS ≤48h

Unexplained lump increasing in size → very urgent direct-access ultrasound within 48 hours.

Useful additions

Clinical practice: blood film where indicated, reticulocytes, clotting screen if bruising, LDH and urate if leukaemia or lymphoma suspected, urine dipstick for blood; follow the local laboratory protocol for urgent results.

Acting on results

Blasts, pancytopenia, severe cytopenias, a markedly abnormal or falling count, abnormal film or a clinically unwell child → discuss the same day with paediatrics/haematology; mild isolated abnormalities in a well child → interpret with the laboratory, clinical context and trend. X-ray or ultrasound suggesting sarcoma (or indeterminate with continuing concern) → consider a very urgent referral ≤48h. A normal test does not exclude cancer if concern persists — reassess and discuss or refer.

Don't delay referral

For immediate features (petechiae, hepatosplenomegaly) refer without waiting for any test.

Who follows up?

Name the clinician who will check the result within the 48-hour window, and tell the family how and when they will hear.

NG12 gives primary care direct, fast access to the few tests that matter in children — the FBC (with film where indicated), and direct-access X-ray and ultrasound — precisely so a child can be triaged within 48 hours without first waiting for a clinic appointment. A very urgent test is only as fast as the person who reads the result, so the safe system names who will act on it and when. The governing safety principle is that a normal result never overrides ongoing clinical or parental concern: the test informs urgency, it does not licence reassurance, and the immediate features bypass testing altogether.

Refer / Safety-net

Parental Concern, Communication and Safety-Netting

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Persistent parental concern

NG12: take into account the insight and knowledge of parents and carers, and consider referral if a parent or carer has persistent concern or anxiety about the child's symptoms, even when the symptoms are most likely to have a benign cause. Take persistent concern seriously: reassess the child, review previous consultations and consider a second opinion, paediatric advice or referral if the concern persists or the diagnosis remains uncertain — parental concern alone does not always require urgent cancer referral. Clearly document the plan and safety-netting.

Repeat presentations

Clinical practice: repeated consultations for the same problem should trigger a diagnostic review — step back and re-examine fully, ideally with continuity or a second opinion — not automatic cancer referral.

Safety-net actively

Continue to investigate until symptoms are explained or resolved; give specific verbal and written advice on which symptoms warrant urgent re-attendance and the expected timescale.

Other action

Persistent parental concern, repeated presentations without a diagnosis, symptoms that do not resolve as expected, a concerning background predisposition syndrome, or abnormal but non-urgent test results → planned review, paediatric advice or referral as appropriate.

What "very urgent" means

Explain a 48-hour referral or test to the family, what will happen, and that it is precautionary; document red flags, the action taken, the timeframe and the review plan.

Make the timeframe explicit on the referral

State "immediate", "very urgent (within 48 hours)" or "suspected cancer pathway" on the referral so it is triaged correctly. Follow the local paediatric referral and acute oncology pathway; direct clinician-to-clinician discussion is appropriate where the local pathway requires it or clinical concern is high.

Talking to the child

Use age-appropriate language; offer young people confidential time without parents/carers for part of the consultation.

SCA phrasing

"I can see you know your child well, and that matters to me. Most children with these symptoms turn out to have something simple, but some of the signs I've found mean I want a blood test within the next two days to be sure. I'll check the result myself and ring you. If new spots or bruises appear, or she becomes more unwell, come straight back today or call 111 out of hours — and call 999 if spots or bruises come with a fever, or she is drowsy, floppy or very unwell."

Parents often detect serious illness early, and NG12 explicitly makes persistent parental concern a reason to consider referral even when the clinician's own assessment is reassuring. Repeated attendance is a recognised feature of delayed diagnosis in children's cancer, so each re-attendance should be treated as a fresh opportunity for a full examination rather than a continuation of the previous impression. Stating the exact NG12 timeframe on the referral (with direct discussion where the local pathway requires it) is what ensures the child is actually seen inside the window. In the SCA, validating the parent's knowledge, explaining the plan and its timeframe, and committing to personal follow-up of the result are the behaviours examiners look for.

Reference

NG12 Children and Young People — Symptom · Action · Timeframe

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A summary of the NICE NG12 children and young people recommendations (current — cross-check against the live NICE page before use), grouped by symptom. Each row gives the action and timeframe. Immediate = acute referral or admission within a few hours. ≤48h = very urgent appointment or test within 48 hours. Suspected cancer pathway = urgent suspected cancer referral. Other = consider referral / clinical judgement.

Abdominal

Hepatosplenomegaly (unexplained)

Immediate Specialist assessment (leukaemia)

Abdominal mass / enlarged abdominal organ (unexplained)

≤48h Specialist appointment (neuroblastoma, Wilms')

Splenomegaly (unexplained)

≤48h Specialist appointment (non-Hodgkin lymphoma)

Bleeding / bruising / skin

Petechiae (unexplained)

Immediate Specialist assessment (leukaemia)

Petechiae with fever, toxic appearance, altered consciousness, shock or rapidly progressive rash

Immediate 999 — manage as suspected sepsis

Bruising / bleeding (unexplained)

≤48h FBC

Pallor

≤48h FBC

Lumps / masses

Lymphadenopathy (unexplained)

≤48h Specialist appointment (Hodgkin and non-Hodgkin lymphoma)

Lymphadenopathy (generalised)

≤48h FBC

Lump (unexplained) increasing in size

≤48h Ultrasound

Neurological

Newly abnormal cerebellar or other central neurological function

≤48h Specialist appointment

Reduced consciousness, new-onset seizure, signs of raised intracranial pressure, focal deficit or rapidly progressive symptoms

Immediate Emergency assessment (clinical practice)

Non-specific

Fatigue (persistent)

≤48h FBC

Fever (unexplained)

≤48h FBC

Infections (unexplained, persistent)

≤48h FBC

Fever, night sweats, pruritus, weight loss or breathlessness with lymphadenopathy

Taken into account when deciding on the ≤48h lymphoma referral

Persistent parental concern

Other Consider referral

Skeletal

Bone pain (persistent or unexplained)

≤48h FBC

Bone pain / swelling (unexplained)

≤48h X-ray

Urological

Haematuria (visible, unexplained)

≤48h Specialist appointment (Wilms')

Primary-care investigations / eye

X-ray or ultrasound suggests sarcoma (or uncertain ultrasound with ongoing concern)

≤48h Specialist appointment

Absent or abnormal fundal ("red") reflex, or white reflex in photographs

Suspected cancer pathway Ophthalmology (retinoblastoma)

New squint with loss of red reflex (NICE NG127)

Immediate Ophthalmology

Next steps: see Haematological cancers

Almost every NG12 childhood-cancer feature funnels into one of two fast routes — immediate (petechiae, hepatosplenomegaly) or very urgent within 48 hours (almost everything else), with the suspected cancer pathway reserved for an absent fundal reflex. Holding the whole summary in view shows how tight the children's timeframes are compared with adults, and that "very urgent FBC within 48 hours" is by far the commonest single action. The table is a summary for revision; always check the full NG12 wording, and your local children's cancer pathway, before acting on a borderline case.