Epilepsy12 2025 Extended Analysis: Longitudinal trends report
Source: data.gov.uk (2025-07-10)

Epilepsy12 2025 National organisational and clinical audits - combined report on 2024 data. This is a combined report of the organisational and clinical audits for Round 4 Cohort 6, published in 2025.

Epilepsy12, the UK collaborative clinical audit of health care for children and young people with suspected epileptic seizures is a national clinical audit delivered by the Royal College of Paediatrics and Child Health. It is commissioned by the Healthcare Quality Improvement Partnership (HQIP) and funded by NHS England and the Welsh Government. In 2022, a further contract was awarded to RCPCH to deliver the audit up to 31 March 2025. This has since been extended by HQIP for an additional two years, allowing the audit to run through to 31 March 2027.

The results are of the organisation of paediatric epilepsy services for children and young people in England and Wales as described at November 2024, and the standard of clinical care provided by services that focuses on patients in ‘cohort 6’. This is children and young people who had a first paediatric assessment for a ‘paroxysmal episode’ (or episodes) between 1 December 2022 and 30 November 2023.

This data should not be interpreted without referring to the combined reports summary and extended analyses that contain the reports' full results, which is available at: https://www.rcpch.ac.uk/resources/epilepsy12-national-organisational-audit-clinical-audit-2025

National Clinical Audit of Seizures and 
Epilepsies for Children and Young People 
Extended Analysis C 
Longitudinal Trends Report 
2025

*RCPCH Audits

EPILEPSY12

National Clinical Audit of Seizures and
Epilepsies for Children and Young People

Extended Analysis C
Longitudinal Trends Report
2025

@HaQIP *RCPCH

Improvement Partnership Ceading the way in Children’s Health

Introduction

Epilepsy12 captures information on the care provided to children and young people (aged 0 - 24
years) with a new diagnosis of epilepsy in England and Wales. The audit focuses on the first year
of care following a first assessment for paroxysmal episode(s). Rounds 3 and 4 have collected data
between 2018 and 2024, where children and young people are categorised into ‘cohorts’
depending on the date of their first assessment.

Table 1 outlines the timeframes of each of the cohorts. Note, that cohort 1 had a shorter
timeframe compared to subsequent cohorts.

Table 1: Description of cohorts in Rounds 3 and 4 of Epilepsyl2.

Round Cohort England
3 1 Between 1 July 2018 and 30 November 2018
3 2 Between 1 December 2018 and 30 November 2019
3 3 Between 1 December 2019 and 30 November 2020
4 4 Between 1 December 2020 and 30 November 2021
4 5 Between 1 December 2021 and 30 November 2022
4 6 Between 1 December 2022 and 30 November 2023

Longitudinal Analyses

This report describes longitudinal data for the 10 Key performance Indicator (KPI) measures for
England and Wales combined across the 5 cohorts. Data is displayed to explore trends in
performance over time in Rounds 3 and 4.

As the definitions of some of our KPls have changed for Round 4 cohort 6, we have
retrospectively calculated KP! 1 (Paediatrician with expertise in epilepsy within 2 weeks), KPI 3a
(Tertiary input), and KPI 9b (Care planning components) for the previous cohorts with the new
methodology. This means that performance on the below KPIs will differ from previous
reporting.

We were unable to retrospectively calculate KPI 5 (MRI), KPI 6 (Assessment of mental health
issues), KPI'7 (Mental health support), and KPI 8 (Sodium valproate). That is because these
measures are calculated using data that was not collected prior to cohort 5.

Table 2 describes the 8 KPI measures included in this report. Further details on our methodology,
including how the KPIs are calculated (numerators and denominators), can be found in the
Round 4 Methodology Overview document.

Epilepsy12: Longitudinal Trends Report — 2025

Table 3: Description of Epilepsyl2 KPI measures.

KPI

1. Paediatrician with
expertise in epilepsy
within 2 weeks

2. Access to Epilepsy
Specialist Nurse

3a. Tertiary Input

3b. Epilepsy surgery
referral

4. ECG

9a. Care planning
agreement

9b. Care planning
components

10. School Individual
Health Care Plan

Full Title

Percentage of children and young people seen by a ‘consultant
Paediatrician with expertise in epilepsies’ within two weeks from
first paediatric assessment

Percentage of children and young people seen by an epilepsy
specialist nurse by first year.

Percentage of children and young people meeting defined criteria
for paediatric neurology referral, with input of tertiary care and/or
CESS referral by first year.

Percentage of ongoing children and young people meeting defined
Children’s Epilepsy Surgery Service (CESS) referral criteria with
evidence of CESS referral.

Percentage of children and young people with convulsive seizures
and epilepsy, with an ECG at first year.

The percentage of children and young people with epilepsy after 12
months where there is evidence that:

a. care planning includes a patient held individualised epilepsy
document or copy clinic letter that includes care planning
information.

b. there is patient/carer/parent agreement to the care planning.

c. care planning has been updated when necessary

Percentage of children and young people diagnosed with epilepsy
with documented evidence of communication regarding core
components of care planning including, Parental prolonged seizures
Care Plan, Water Safety, First Aid, SUDEP and Service contact details

Percentage of children and young people with

epilepsy aged 5 years and

above with evidence of a school individual healthcare plan by 1 year
after first paediatric assessment.

Epilepsy12: Longitudinal Trends Report — 2025

Table 3 shows the national (England and Wales combined) averages for the 10 KPI measures
between cohort 1 and 6. Figure 1 displays the longitudinal trends in the KPI measures over time
for England and Wales combined.

Table 3: Longitudinal data for KPI measures for England and Wales combined across the 6
cohorts.

KPI Cohort 1 Cohort 2 Cohort 3 Cohort 4 Cohort 5 Cohort 6
1. Paediatrician 43.9% 50.0% 51.7% 52.6% 50.8% 32.4%

with expertise (448/12) (1054/2106) = (1021/1974) (1222/2324) (1123/2212) (1007/3105)
in epilepsy
within 2 weeks

2. Access to 69.3% 73.2% 76.2% 77.5% 80.7% 85.6%
Epilepsy (77/1112) (1542/2106) (1505/1974) xx-xxxx-xxxx) _— (1786/2212) ~— (2659/3105)
Specialist
Nurse
3a. Tertiary 50.8% 45.1% 52.2% 45.1% 49.2% 49.2%
Input (162/319) (257/570) (251/480) (268/594) (291/592) xx-xxxx-xxxx)
3b. Epilepsy 30.3% 22.6% 36.3% 33.1% 37.3% 42%
surgery referral (27/89) (24/106) (49/135) (39/118) (41/110) (81/193)
4. ECG 68.2% 65.4% 67.8% 70.1% 72.1% 83.4%

(478/701) —_ (856/1309) (827/1218) (1003/1431) (1036/1436) (1658/1989)

5. MRI - - - - - -

6. Mental - - - - - -
Health
screening
7. Mental Health - - - - - -
support
8. Sodium - - - - - =
Valproate
9a. Care 62.4% 65.4% 69.9% 74.3% 80.8% 85.8%
planning (694/112) (1378/2106) _~—-(1379/1974) (1727/2324) (1787/2212) (2665/3105)
agreement
9b. Care 38.5% 40.0% 48.5% 53.5% 64.8% 67.4%
planning (428/112) (842/2106) —— (957/1974) (1244/2324) — (1433/2212) + (2093/3105)
components

10. School 32.2% 32.4% 35.0% 36.9% 38.9% 67.2%
Individual (231/717) = (4541402) =(484/1381) ~— (577/1562) (573/1472) (1427/2125)
Health Care
Plan

Epilepsy12: Longitudinal Trends Report — 2025

100%

80%
60%
40%
- h I
0%
2.Accessto 3a.Tertiary 3b. Epilepsy 4. ECG 9a. Care 9b. Care 10. School
paediatrician epilepsy Input surgery planning planning Individual
with specialist referral agreement components Health Care
expertise nurse Plan
within
2weeks

mRound3, mRound3, mRound3, mMRound4, Round 4, Round 4, Cohort 6
Cohort 1 Cohort 2 Cohort 3 Cohort 4 Cohort 5

Figure 1: Longitudinal data for KPI measures for England and Wales combined across the 6
cohorts.

Epilepsy12: Longitudinal Trends Report - 2025