Epilepsy12 2024 Extended Analysis: Longitudinal trends report
Source: data.gov.uk (2024-11-06)

Epilepsy12 2024 National organisational and clinical audits - combined report on 2023 data. This is a combined report of the organisational and clinical audits for Round 4 Cohort 5, published in 2024.

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.

The results are of the organisation of paediatric epilepsy services for children and young people in England and Wales as described at November 2023, and the standard of clinical care provided by services that focuses on patients in ‘cohort 5’. This is children and young people who had a first paediatric assessment for a ‘paroxysmal episode’ (or episodes) between 1 December 2021 and 30 November 2022.

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-2024

National Clinical Audit of Seizures and 
Epilepsies for Children and Young People 
Extended Analysis C 
Longitudinal Trends Report 
2024 

 
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Epilepsy12: Longitudinal Trends Report - 2024  
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 focus on the ﬁrst year of 
care following a ﬁrst assessment for paroxysmal episode(s). Rounds 3 and 4 of the audit have so 
far collected data between 2018 and 2023, 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 Epilepsy12. 
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 
 
 
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 KPIs have changed for Round 4 cohort 5, we have 
retrospectively calculated KPI 1 (Paediatrician with expertise), KPI 3a (Tertiary input), and KPI 9b 
(Comprehensive care planning content) 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.  
 
 

 
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Epilepsy12: Longitudinal Trends Report - 2024  
Table 3: Description of Epilepsy12 KPI measures.  
KPI 
Full Title 
1. Paediatrician with 
expertise 
Percentage of children with epilepsy, with input by a ‘consultant 
paediatrician with expertise in epilepsies’ within two weeks from 
ﬁrst paediatric assessment 
2. Epilepsy Specialist 
Nurse (ESN) 
Percentage of children with epilepsy input by an epilepsy specialist 
nurse by ﬁrst year 
3a. Tertiary Input 
Percentage of children meeting deﬁned criteria for paediatric 
neurology referral, with input of tertiary care and/or CESS referral by 
ﬁrst year 
3b. Epilepsy surgery 
referral 
Percentage of ongoing children meeting deﬁned Children’s 
Epilepsy Surgery Service (CESS) referral criteria with evidence of 
CESS referral 
4. ECG 
Percentage of children with convulsive seizures and epilepsy, with 
an ECG at ﬁrst year 
9a. Care planning 
agreement 
The percentage of children with epilepsy after 12 months where 
there is evidence of an individualised and updated care plan that is 
agreed by the patient/parent/carer. 
9b. Care panning 
content 
Percentage of children diagnosed with epilepsy with documented 
evidence of communication regarding core elements of care 
planning, including, parental prolonged seizures care plan*, water 
safety, ﬁrst aid, general participation/risk, SUDEP and service contact 
details. 
10. School Individual 
Care Plan 
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. 
 
 

 
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Epilepsy12: Longitudinal Trends Report - 2024  
Table 3 shows the national (England and Wales combined) averages for the 10 KPI measures 
between cohort 1 and 5. 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 5 
cohorts. 
KPI 
Cohort 1 
Cohort 2 
Cohort 3 
Cohort 4 
Cohort 5 
1. Paediatrician with 
expertise 
43.9% 
(448/1112
)  
50.0% 
(1054/2106) 
51.7% 
(1021/1974) 
52.6% 
(1222/2324)  
50.8% 
(1123/2212) 
2. Epilepsy Specialist Nurse 
Input (ESN) 
69.3% 
(771/1112) 
73.2% 
(1542/2106) 
76.2% 
(1505/1974)  
77.5% 
xx-xxxx-xxxx)  
80.7% 
(1786/2212) 
3a. Tertiary Input 
50.8% 
(162/319)  
45.1% 
(257/570) 
52.2%  
(251/480) 
45.1% 
(268/594)  
49.2% 
(291/592) 
3b. Epilepsy surgery referral 
30.3% 
(27/89)  
22.6% 
(24/106) 
36.3% 
(49/135)  
33.1% 
(39/118)  
37.3% 
(41/110) 
4. ECG 
68.2% 
(478/701)  
65.4% 
(856/1309) 
67.8%  
(827/1218) 
70.1% 
(1003/1431)  
72.1% 
(1036/1436) 
5. MRI 
- 
- 
- 
- 
  
6. Mental Health screening 
- 
- 
- 
- 
  
7. Mental Health support 
- 
- 
- 
- 
  
8. Sodium Valproate 
- 
- 
- 
- 
  
9a. Care planning 
agreement 
62.4% 
(694/1112) 
65.4% 
(1378/2106) 
69.9% 
(1379/1974)  
74.3% 
(1727/2324)  
80.8% 
(1787/2212)  
9b. Care panning content 
38.5% 
(428/1112) 
40.0% 
(842/2106) 
48.5%  
(957/1974) 
53.5% 
(1244/2324)  
64.8% 
(1433/2212)  
10. School Individual Care 
Plan 
32.2% 
(231/717) 
32.4% 
(454/1402) 
35.0% 
(484/1381)  
36.9% 
(577/1562)  
38.9% 
(573/1472) 
 

 
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Epilepsy12: Longitudinal Trends Report - 2024  
 
Figure 30: Longitudinal data for KPI measures for England and Wales combined across the 5 
cohorts.  
 
0%
20%
40%
60%
80%
100%
1.
Paediatrician
with
expertise
2. ESN
3a. Tertiary
Input
3b. Epilepsy
surgery
referral
4. ECG
9a. Care
planning
agreement
9b. Care
panning
content
10. School
Individual
Care Plan
Round 3,
Cohort 1
Round 3,
Cohort 2
Round 3,
Cohort 3
Round 4,
Cohort 4
Round 4,
Cohort 5