Introduction
In the UK, the management of paediatric epilepsy is primarily guided by two key national bodies: the National Institute for Health and Care Excellence (NICE) and the Royal College of Paediatrics and Child Health (RCPCH). The NICE guideline (NG217, updated April 2023) provides a comprehensive, evidence-based standard for the NHS in England, Wales, and Northern Ireland. The RCPCH guideline, published in 2025 as an update to the 2017 'Epilepsy12' national audit framework, offers a practical, clinician-focused toolkit that reflects current UK paediatric neurology practice. While both aim to improve care, their structure, emphasis, and specific recommendations differ. This comparison is designed to help clinicians navigate these guidelines effectively.
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Diagnosis and Initial Assessment
NICE (NG217)
NICE provides a highly structured, sequential pathway for diagnosis. It emphasises the critical role of a specialist (defined as a paediatrician with training and expertise in epilepsy) in confirming the diagnosis.
- Key Steps: Detailed history, witness account (e.g., video), physical examination, and EEG. NICE is cautious about EEG, recommending it only to support a diagnosis of epilepsy, not to rule it out.
- Neuroimaging: MRI is recommended for all children under 2 years with epilepsy and should be considered in others, especially if the epilepsy is focal, drug-resistant, or there is uncertainty in classification.
- Classification: Strong emphasis on using the 2017 International League Against Epilepsy (ILAE) classification system to guide management.
RCPCH (2025)
The RCPCH guideline aligns with NICE on core principles but presents a more pragmatic, real-world approach to the diagnostic process.
- Key Steps: Similarly stresses the history and witness account as paramount. It places a stronger emphasis on the use of home video recordings by families.
- Neuroimaging: More explicitly recommends an "epilepsy protocol" MRI for nearly all children with newly diagnosed epilepsy, unless there is a clear benign genetic generalised epilepsy syndrome. This is a more proactive stance than NICE's "consider" for older children.
- Classification: Also advocates for ILAE classification but provides more practical tools and flowcharts to aid busy clinicians in syndromic diagnosis.
Key Difference and Practical Takeaway
The main difference lies in neuroimaging. RCPCH encourages a lower threshold for MRI to identify structural causes early. The practical takeaway is that for most children beyond infancy, an epilepsy-protocol MRI is now considered standard of care in UK paediatric neurology practice, as per RCPCH.
Treatment Principles and Anti-Seizure Medication (ASM) Selection
NICE (NG217)
NICE recommendations are based on a rigorous health technology assessment of clinical and cost-effectiveness. Treatment choices are strongly linked to epilepsy syndrome and seizure type.
- Focal Onset Seizures: Lamotrigine or levetiracetam are recommended as first-line options. Carbamazepine or oxcarbazepine are alternatives.
- Generalised Onset Tonic-Clonic Seizures: Sodium valproate is the most clinically effective first-line, but its significant teratogenic risks mean it requires special precautions.
- Shared Decision-Making: Stresses the need to involve children and parents in choosing ASM, considering side-effect profiles, monitoring requirements, and lifestyle.
RCPCH (2025)
The RCPCH guideline reflects a consensus from UK paediatric neurologists and incorporates newer ASMs more readily into first- and second-line options.
- Syndrome-Driven Approach: Provides very specific tables matching syndromes to preferred ASMs. For example, for Childhood Absence Epilepsy, ethosuximide is highlighted as first-line.
- Broader First-Line Options: For focal epilepsy, levetiracetam is often positioned as a predominant first-choice due to its rapid titration and generally favourable side-effect profile in children.
- Valproate Use: Echoes NICE's caution but provides clearer, practical guidance on the mandatory Pregnancy Prevention Programme for girls and young women of childbearing potential.
Key Difference and Practical Takeaway
While both are syndrome-driven, NICE is more restrictive, focusing on medications with the strongest health economic evidence, whereas RCPCH incorporates a wider range of clinician-preferred options. In practice, many paediatric neurologists follow the RCPCH's more nuanced medication tables, which are perceived as more reflective of contemporary practice, especially regarding the use of levetiracetam.
Special Situations
Infantile Spasms (West Syndrome)
NICE: Recommends vigabatrin or corticosteroid therapy (prednisolone or tetracosactide). The choice may depend on the underlying aetiology (e.g., vigabatrin for tuberous sclerosis).
RCPCH: Strongly emphasises urgent treatment with hormonal therapy (prednisolone or tetracosactide) as first-line due to superior long-term developmental outcomes, with vigabatrin reserved for tuberous sclerosis or if hormonal therapy fails. This is a more definitive stance.
Dravet Syndrome
Both guidelines recommend sodium valproate and topiramate. RCPCH (2025) gives stronger emphasis to cannabidiol and stiripentol as standard adjunctive therapies, reflecting their established use in the NHS following national funding approvals.
Status Epilepticus
Both guidelines follow the same basic principles (benzodiazepines, then phenytoin/phenobarbital, then ICU transfer). RCPCH provides more detailed, practical algorithms for dosing and timing in a hospital setting, including the use of buccal midazolam in community settings.
Practical Takeaway
For emergency and complex situations like infantile spasms and Dravet syndrome, the RCPCH guideline offers more specific, directive management pathways that are closely aligned with current tertiary centre practice in the UK.
Practical Clinical Flow: From Presentation to Follow-up
This integrated flow combines the strengths of both guidelines into a practical, step-by-step approach for clinicians.
- Step 1: Referral. Refer to a paediatrician with training and expertise in epilepsy following a first unprovoked seizure.
- Step 2: Diagnosis. Take a detailed history and obtain a witness video. Classify using ILAE 2017. Arrange an EEG to support classification. Arrange an epilepsy-protocol MRI for most children (per RCPCH emphasis).
- Step 3: Treatment Discussion. Discuss diagnosis and prognosis. Choose first-line ASM based on syndrome, using RCPCH tables for nuanced options and NICE for cost-effectiveness context. Discuss safety, side effects, and emergency management.
- Step 4: Initiation and Review. Start ASM with a clear titration plan. Review within 4-8 weeks for efficacy and tolerability. Consider second-line options or referral to tertiary paediatric neurology if drug-resistant.
- Step 5: Ongoing Management. Annual review including seizure control, ASM side effects, growth, development, and mental health. Re-evaluate the diagnosis if seizures continue.
Frequently Asked Questions (FAQs) for Clinicians
1. Which guideline should I follow if they conflict?
For clinicians in England, Wales, and Northern Ireland, NICE represents the formal evidence-based standard. However, the RCPCH guideline is written by and for UK paediatricians and often reflects contemporary, pragmatic practice. In most cases, they are complementary. Where they differ (e.g., MRI indications), clinical judgement is key. Discussing complex cases with a paediatric neurologist is always advisable.
2. How should I manage a girl for whom sodium valproate is the most effective option?
Both guidelines are unequivocal. Valproate must not be used in females of childbearing potential unless the conditions of the Pregnancy Prevention Programme are fully met. This includes a signed risk acknowledgement form, use of highly effective contraception, and annual review by a specialist. If the PPP cannot be met, an alternative, less teratogenic ASM must be used, even if potentially less effective.
3. When should I refer to a tertiary paediatric neurology centre?
Referral criteria are consistent across both guidelines: failure of two appropriately chosen and tolerated ASMs (drug-resistant epilepsy), uncertainty in diagnosis or classification, presentation with an epileptic encephalopathy (e.g., infantile spasms), or a need for advanced treatments (e.g., epilepsy surgery assessment, ketogenic diet).
4. What is the role of genetic testing?
Both guidelines support genetic testing in specific contexts, particularly in early-onset epileptic encephalopathies (e.g., Dravet Syndrome), or when a specific genetic aetiology is suspected. RCPCH (2025) provides more explicit guidance on next-generation sequencing panels as a first-line genetic test in these scenarios.
5. How do the guidelines address mental health comorbidities?
NICE has a stronger focus on this, recommending screening for anxiety, depression, and behavioural issues at diagnosis and during annual reviews. RCPCH also highlights their importance but integrates it within a broader holistic care package. Clinicians should be proactive in identifying and managing comorbidities, as per NICE's systematic approach.
Source Links
- NICE Guideline NG217 (April 2023): Epilepsies in children and young people: diagnosis and management
- RCPCH Guideline (2025): Paediatric Epilepsy Guideline 2025 (Link to be confirmed upon publication)
- RCPCH Epilepsy12 National Audit: Epilepsy12 Website