Appendix B: Epilepsy12 Clinical audit report 2022 on 2020-21 data
Source: data.gov.uk (2023-03-28)

Epilepsy12 2022 National organisational and clinical audits - combined report on 2021 data. This is a combined report of the organisational and clinical audits for Round 3 Cohort 3, published in 2022.

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. Round 3 began on 1 April 2017 as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP).

The results are of the organisation of paediatric epilepsy services for children and young people in England and Wales as described at November 2021, and the standard of clinical care provided by services that focuses on patients in ‘cohort 3’. This is children and young people who had a first paediatric assessment for a ‘paroxysmal episode’ (or episodes) between 1 December 2019 and 30 November 2020.

These data should not be interpreted without referring to the combined reports summary and Appendices A&G that contain the reports' full results. which is available at: https://www.rcpch.ac.uk/resources/epilepsy12-national-organisational-audit-clinical-audit-2022

1 

2 
Participation and case ascertainment
Participation
Case ascertainment
Health board and trust ascertainment
Health board and trust data completeness
Description of Cohort 3
Age and Sex
 
Deprivation
Diagnostic status
Prior experience of seizures
Non-epileptic episodes
Initial referral and examination
Referring service to first paediatric assessment
Time since first referral to first paediatric assessment
Age at first paediatric assessment
Setting of first paediatric assessment
Appropriate first assessment
 
Performance indicator 4: Appropriate first paediatric assessment
Description of episodes
Seizure type
Epileptic seizure type
Focal onset
Generalised onset
Unknown onset
Non-epileptic seizure type
Electroclinical syndrome
Performance indicator 5: Seizure formulation
Seizure cause
Convulsive seizures
Convulsive epileptic seizures
Prolonged generalised convulsive seizures

 
3 
 
 
Prolonged focal convulsive seizures
 
Family history of epilepsy
Neurodisability or neurodevelopmental problems
Mental health conditions
Investigations
 
Time since first request for EEG
 
Performance indicator 6: ECG
 
Performance indicator 7: MRI
Treatment
 
Anti-epileptic drugs (AEDs)
 
Sodium valproate use
 
Performance indicator 9 and 9b: Sodium valproate
 
Rescue medication prescribed
 
Children’s Epilepsy Surgery Service (CESS) referral criteria
 
Performance indicator 3b: Epilepsy surgery referral
Care planning
 
Performance indicator 10: Comprehensive care planning agreement
 
Performance indicator 11: Comprehensive care planning content
 
Performance indicator 12: School individual healthcare plan
 
Sudden Unexpected Death in Epilepsy (SUDEP)
Professionals and services involved in care
 
Professionals
 
Performance indicator 1: Paediatrician with expertise in epilepsies
 
Performance indicator 2: Epilepsy specialist nurse
 
Performance indicator 3: Tertiary input
 
Ongoing investigations
 
Performance indicator 8: Accuracy of diagnosis
Overview of performance indicators

 
4 
 
 

 
5 
 
 

 
6 
 
 

 
7 
 
 
 
Figure 1: Percentage of children and young people registered in Round 3 by EEG and Health 
Boards and Trusts by download date
 
 

 
8 
 
 
 

 
9 
 
 
Figure 2: Data completeness by country in Round 2, Round 3 cohorts 1-3 in Round 3. 

 
10 
 
 
 

 
11 
 
 

 
12 
 

 
13 
 
• 
• 
• 
• 
 
 

 
14 
 
 
 
 
 
 
 

 
15 
 

 
16 
 
  
 
 
 
 
 
 
 
 
 
 
  
  
  
  
  
  
  
 

 
17 
 
 
 

 
18 
 
 
 
 
 
 
 
 

 
19 
 
 

 
20 
 
  
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Country/Network

 
21 
 
• 
• 
• 
  
4% (148/5501)
88% (4861/5501)
8% (429/5501)
7% (416/5501)
84% (4594/5501)
9% (491/5501)
8% (446/5501)
82% (4513/5501)
10% (542/5501)

 
22 
 
 
 

 
23 
 

 
24 
 
 
Epilepsy: 2 or more epileptic episodes
more than 24 hours apart
Epilepsy: other reason
Not epilepsy: single epileptic episode
Not epilepsy: cluster of epileptic
episodes within 24 hours
Non-epileptic episode (s)
Uncertain episodes

 
25 
 
 
 
 
 
 
 

 
26 
 
 

 
27 
 
 

 
28 
 
 
 
 

 
29 
 
 
 
 

 
30 
 

 
31 
 
 
 
Figure 16a: Time since first referral to first paediatric assessment in England and Wales.  
 
Table 12b: Time in weeks to achieving input from paediatrician with expertise in epilepsy since 
the first referral to paediatrics by deprivation quintiles in England and Wales. 
 

 
32 
 
 
 

 
33 
 
 
 
 

 
34 
 
 

 
35 
 
 
 
43%
57%
45%
54%
48%
52%
50%
50%
<1%
56%
44%
0%

 
36 
 
  
4 
% of all children and young 
people with evidence of 
appropriate first paediatric 
clinical assessment 
Round 3 Cohort 1 
62% (685/1112) 
60% (632/1051) 
87% (53/61) 
Round 3 Cohort 2 
61% (1281/2106) 
61% (1264/2086) 
85% (17/20) 
Round 3 Cohort 3 
63% (1253/1974) 
64% (1221/1918) 
57% (32/56) 
4a 
% children and young people 
with evidence of descriptions 
of episode 
Round 3 Cohort 1 
98% (1094/1112) 
98% (1033/1051) 
100% (61/61) 
Round 3 Cohort 2 
99% (2077/2106) 
99% (2057/2086) 
100% (20/20) 
Round 3 Cohort 3 
99% (1953/1974) 
99% (1897/1918) 
100% (56/56) 
4b 
% children and young people 
with evidence of descriptions 
of age of child / timing of the 
first episode 
Round 3 Cohort 1 
81% (901/1112) 
81% (846/1051) 
90% (55/61) 
Round 3 Cohort 2 
79% (1670/2106) 
79% (1652/2086) 
90% (18/20) 
  
Round 3 Cohort 3 
83% (1631/1974) 
83% (1594/1918) 
66% (37/56) 
4c 
% children and young people 
with evidence of descriptions 
of frequency 
Round 3 Cohort 1 
94% (1040/1112) 
93% (979/1051) 
100% (61/61) 
Round 3 Cohort 2 
95% (1991/2106) 
95% (1973/2086) 
90% (18/20) 
Round 3 Cohort 3 
95% (1874/1974) 
95% (1822/1918) 
93% (52/56) 
4d 
% children and young people 
with evidence of descriptions 
of general examination 
Round 3 Cohort 1 
94% (1048/1112) 
94% (987/1051) 
100% (61/61) 
Round 3 Cohort 2 
94% (1982/2106) 
94% (1963/2086) 
95% (19/20) 
Round 3 Cohort 3 
92% (1821/1974) 
92% (1767/1918) 
96% (54/56) 
4e 
% children and young people 
with evidence of descriptions 
of neurological examination 
Round 3 Cohort 1 
92% (1018/1112) 
91% (959/1051) 
97% (59/61) 
Round 3 Cohort 2 
91% (1911/2106) 
91% (1892/2086) 
95% (19/20) 
Round 3 Cohort 3 
89% (1764/1974) 
89% (1709/1918) 
98% (55/56) 
4f 
% children and young people 
with evidence of description of 
developmental, learning or 
schooling progress 
Round 3 Cohort 1 
83% (918/1112) 
82% (857/1051) 
100% (61/61) 
Round 3 Cohort 2 
83% (1743/2106) 
83% (1723/2086) 
100% (20/20) 
Round 3 Cohort 3 
85% (1674/1974) 
85% (1621/1918) 
95% (53/56) 
4g 
% children aged 3 years and 
over with evidence of 
consideration of emotional or 
behavioural problems 
Round 3 Cohort 1 
66% (734/1112) 
65% (680/1051) 
89% (54/61) 
Round 3 Cohort 2 
68% (1435/2106) 
68% (1420/2086) 
75% (15/20) 
Round 3 Cohort 3 
73% (1436/1974) 
72% (1386/1918) 
89% (50/56) 
 

 
37 
 
 
Health Board/Trust
Cohort 3 National perfomance

  
38 
 
  
 
 
 
 
 
 
 
 
 
 

  
39 
 
  
• 
• 
• 
• 
 

  
40 
 
Round 3 cohort 1 
(N=1112)
Round 3 cohort 2 
(N=2106)
Round 3 cohort 3 
(N=1974) 

  
41 
 

  
42 
 
 

  
43 
 
Round 3 cohort 1 
(N=1112)
Round 3 cohort 2 
(N=2106)
Round 3 cohort 3 
(N=1974) 

  
44 
 
 

  
45 
 
 

  
46 
 
 
 
 
 
 
 
 

  
47 
 
 
 
Health Board/Trust
Cohort 3 National perfomance

  
48 
 
 
Round 3 cohort 1 
(N=1112)
Round 3 cohort 2 
(2106)
Round 3 cohort 2 
(2106) 

  
49 
 
 
 
 
 

  
50 
 
 
 

  
51 
 
 
 

  
52 
 
 

  
53 
 
 
 

  
54 
 
 
 

  
55 
 
 
 

  
56 
 
• 
• 
• 
• 
• 
• 
• 
• 
• 
• 
• 
• 
• 
• 
• 
• 
 

  
57 
 
• 
• 
• 

  
58 
 
 
 
Figure 32: Time in weeks to when EEG was obtained since EEG request date in England and 
Wales, 

  
59 
 
 
 
 
 
 
 

  
60 
 
 
 

  
61 
 
  
 
 
 
 
  
  
  
  

  
62 
 
 
. 
 
 
Health Board/Trust
Cohort 3 National perfomance

  
63 
 
 
 
 
 
 

  
64 
 
 

  
65 
 
 

  
66 
 
 
*
 

  
67 
 
 
 
 
 
 
 
  
  

  
68 
 
 
 

  
69 
 
 

  
70 
 
 
 

  
71 
 
 
 
 

  
72 
 

  
73 
 

  
74 
 
 
 

  
75 
 
 
 

  
76 
 
 
 

  
77 
 
 

  
78 
 
  
 

  
79 
 
 
 

  
80 
 
 
 

  
81 
 
.
  
 

  
82 
 
 
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%

  
83 
 

  
84 
 

  
85 
 
 
 
 

  
86 
 
 

  
87 
 
 
 

  
88 
 
 

  
89 
 
 

  
90 
 
  
  
 
 

  
91 
 
 
 

  
92 
 
 
: 

  
93 
 
 

  
94 
 
 

  
95 
 

  
96 
 
 
 
 
 
 
 
 
32%
70%
62%
40%
100%
97%
69%
68%
88%
62%
30%
59%
69%
88%
32%
70%
65%
48%
71%
98%
71%
65%
91%
61%
23%
52%
73%
87%

  
97 
 
 

  
98