Appendix B: Epilepsy12 Clinical audit report 2021 on 2019-20 data
Source: data.gov.uk (2023-03-28)

Epilepsy12 2021 National organisational and clinical audits - combined report on 2020 data. This is a combined report of the organisational and clinical audits for Round 3 Cohort 2, published in 2021. 

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 2020, and the standard of clinical care provided by services that focuses on patients in ‘cohort 2’. This is children and young people who had a first paediatric assessment for a ‘paroxysmal episode’ (or episodes) between 1 December 2018 and 30 November 2019. 

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-2021

Royal College of
Paediatrics and Child Health
RCPCH
National Clinical Audit of Seizures and Epilepsies
for Children and Young People
Audits
RCPCH

Appendix B: Epilepsy12 Clinical audit – Round 3, Cohort 2

2

Epilepsy12
National Clinical Audit of Seizures and Epilepsies for Children and Young People
Combined organisational and clinical audits: Report for England and Wales, Round 3
Cohort 3 (2019-20).
The Healthcare Quality Improvement Partnership (HQIP) is led by a consortium of the
Academy of Medical Royal Colleges, the Royal College of Nursing and National Voices. Its
aim is to promote quality improvement in patient outcomes, and in particular, to increase
the impact that clinical audit, outcome review programmes and registries have on
healthcare quality in England and Wales. HQIP holds the contract to commission, manage
and develop the National Clinical Audit and Patient Outcomes Programme (NCAPOP),
comprising around 40 projects covering care provided to people with a wide range of
medical, surgical and mental health conditions. The programme is funded by NHS England,
the Welsh Government and, with some individual projects, other devolved administrations
and crown dependencies. www.hqip.org.uk/national-programmes

© 2021 Healthcare Quality Improvement Partnership (HQIP)
Published by RCPCH 2021.
The Royal College of Paediatrics and Child Health is a registered charity in England and Wales (1057744) and in Sco
tland (SCO38299).

3

Appendices
The Epilepsy12 combined report for 2021 includes a description of key findings,
recommendations, quality improvement activities, and patient involvement in Epilepsy12.
It is available to download from Epilepsy12.
Appendix A: Full Epilepsy12 2020 organisational audit results for Round 3, includes the
publication of the structure of services and available workforce for paediatric epilepsy
service staff within Health Boards and Trusts with England and Wales. It is available to
download from Epilepsy12.

Appendix B: Epilepsy12 Clinical audit - Round 3, Cohort 2
Full Epilepsy12 Round 3 cohort 2 clinical audit results:

4
Participation and case ascertainment

5
Description of cohort

12
Diagnostic status

20
Initial referral and examination

27
Description of episodes

35
Convulsive seizures

46
Neurodisability or neurodevelopmental problems
50
Mental health conditions

53
Investigations

55
Treatment

61
Care planning

71
Professionals and services involved in care

77
Overview of performance indicators

84
List of clinical data figures & tables

90
Data completeness

97

4

Appendix B: Full Epilepsy12 Round 3
cohort 2 clinical audit results
In this section, we present the full tables of results and figures for each of the Epilepsy12
Round 3 cohort 2 audit measures. Results are presented by England, Wales and each OPEN
UK regional epilepsy network.
For individual Health Board or Trust level results, please go to the Epilepsy12 website
(www.rcpch.ac.uk/epilepsy12).

Paediatric epilepsy network names are abbreviated in the following tables of results and
figures. The OPEN UK Regional Paediatric Epilepsy Networks are named in the following
table.
OPEN UK Regional
Paediatric Epilepsy
Network
Regional Network full name
BRPNF
Birmingham Regional Paediatric Neurology Forum
CEWT
Children's Epilepsy Workstream in Trent
EPEN
Eastern Paediatric Epilepsy Network
EPIC
Mersey and North Wales network 'Epilepsy in Childhood'
interest group
NTPEN
North Thames Paediatric Epilepsy Network
NWEIG
North West Children and Young People's Epilepsy Interest
Group

Northern Ireland epilepsy services
ORENG
Oxford Region Epilepsy Interest Group
PENNEC
Paediatric Epilepsy Network for the North East and Cumbria
SETPEG
South East Thames Paediatric Epilepsy Group
SPEN
Scottish Paediatric Epilepsy Network
SWEP
South Wales Epilepsy Forum
SWIPE
South West Interest Group Paediatric Epilepsy
SWTPEG
South West Thames Paediatric Epilepsy Group
TEN
Trent Epilepsy Network
WPNN
Wessex Paediatric Neurosciences Network
YPEN
Yorkshire Paediatric Neurology Network

5

Participation and case ascertainment
Participation
Table 1 provides a breakdown on Epilepsy12 Round 3 cohort 2 participation by Paediatric
Epilepsy Networks and by country.
There are 145 registered Health Boards and Trusts in Round 3 cohort 2 of Epilepsy12 (149
prior to the Trust merges-cohort 1). 103/145 (71%) Health Boards and Trusts submitted a
record of the first year of care clinical data for one or more children and young people in
cohort 2. There was a 5% reduction in the percentage of Health Boards and Trusts that
submitted a record of the first year of care clinical data for one or more children and young
people in cohort 2 (71%) compared to cohort 1 (76%).

Table 1: Participation in Round 3 of Epilepsy12.
Country/network
Number of
registered Health
Boards and Trusts
Number of Health Boards and
Trusts that have submitted
cohort 1 clinical audit data
Number of Health Boards and
Trusts that have submitted
cohort 2 clinical audit data
England and Wales
145
76% (113/149)
71% (103/145)
England
139
76% (109/143)
73% (101/139)
Wales
6
67% (4/6)
33% (2/6)

BRPNF
14
73% (11/15)
57% (8/14)
CEWT
6
100% (6/6)
67% (4/6)
EPEN
14
67% (10/15)
57% (8/14)
EPIC
9
100% (9/9)
89% (8/9)
NTPEN
17
71% (12/17)
76% (13/17)
NWEIG
12
85% (11/13)
75% (9/12)
ORENG
7
100% (7/7)
86% (6/7)
PENNEC
8
78% (7/9)
100% (8/8)
SETPEG
10
50% (5/10)
70% (7/10)
SWEP
5
60% (3/5)
20% (1/5)
SWIPE
11
55% (6/11)
64% (7/11)
SWTPEG
8
63% (5/8)
75% (6/8)
TEN
6
100% (6/6)
100% (6/6)
WPNN
9
78% (7/9)
56% (5/9)
YPEN
9
89% (8/9)
78% (7/9)

6

Case ascertainment
Table 2 shows a total of 22,569 children and young people were registered in the Round 3,
audit between 5th July 2018 and 11th January 2021. 68% (15,442) were registered via an EEG
service and a further 32% (7127) registered by the Health Boards and Trusts. 18,440 children
and young people were verified for inclusion in Round 3 and beyond cohorts by 11th January
2021. There were 34 opt outs post the verification stage.
Table 2: Shows the flow of children and young people through the data capture system
i.e. entry via EEG or Health Boards and Trusts through to inclusion in Round 3 and beyond
cohorts.

Country/network
No. registered
by EEG
No.
registered
by Health
Boards and
Trusts
No.
verified by
Health
Boards and
Trusts
No. not yet
verified by
Health
Boards and
Trusts
No. opt
out
No. excluded
England and Wales
15442
7127
18440
4095
34
1669
England
14941
6928
17844
3999
26
1547
Wales
501
199
596
96
8
122

BRPNF
1043
451
1278
216
0
156
CEWT
1381
131
1170
338
4
77
EPEN
1206
615
1329
492
0
176
EPIC
94
958
1016
26
10
55
NTPEN
1715
373
1702
386
0
240
NWEIG
961
437
1215
183
0
160
ORENG
1932
253
xx-xxxx-xxxx
489
0
148
PENNEC
838
787
1542
83
0
52
SETPEG
319
654
936
37
0
117
SWEP
408
184
522
70
0
90
SWIPE
1622
530
1340
803
9
116
SWTPEG
661
781
1385
48
9
57
TEN
1102
267
1024
345
0
46
WPNN
1492
116
1073
534
1
141
YPEN
668
590
1212
45
1
38

7

Figure 1 shows that there was reduced percentage of children and young people
registered in the Round 3 and beyond cohorts via an EEG service in the download taken
on 11th January 2021 (68%) compared to the download taken on 8th January 2020 (73%).
Health Boards and Trusts registrations increased by the same percentage.

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

Table 3 below shows the number of children and young people that were assessed as
eligible for Round 2 and Round 3 audits. More children and young people were verified
and allocated to Round 3 cohort 2 (10,181) compared to Cohort 1 (4684).
61% (6177/10181) of the children and young people allocated to Round 3 cohort 2 data was
successfully entered on the audit data capture system. Nationally, there was a decrease in
data completeness in Round 3 cohort 2 (61%) compared to cohort 1 (71%) (Figure 2).

73%
27%
68%
32%
0%
10%
20%
30%
40%
50%
60%
70%
80%
Registered by EEG
Registered by
Health Boards and
Trusts
Registered by EEG
Registered by
Health Boards and
Trusts
8th January 2020
11th January 2021
% of children and young people registered

8

Table 3: Number of children and young people registered as eligible for the audit

Round 2
Round 3-January 2020 download
Round 3-January 2021 download
Description of eligible
criteria
England and
Wales
England
Wales
England and
Wales
England
Wales
England and
Wales
England
Wales
Children registered (by EEG
services and the HBTs)
12973
12391
582
14591
14051
540
22569
21869
700
Children excluded (did not
meet audit inclusion
criteria)
8832
8479
353
1280
1177
103
1669
1547
122
Children allocated to
respective cohorts

3350
3174
176
4684
4490
194
10181
9804
377
Children allocated to
respective cohorts who had
their first year of care data
successfully entered on
data capture system
3072
2907
165
3318
3195
123
6177
6102
75
Children allocated to
respective cohorts but their
first year of care data was
not successfully entered on
data capture system
272
261
11
1366
1295
71
4004
3702
302
Data completeness
92%
(3072/3350)
92%
(2907/3174)
94%
(165/176)
71%
(3318/4684)
71%
(3195/4490)
63%
(123/194)
61%
(6177/10181)
62%
(6102/9804)
20%
(75/377)

9

Figure 2: Percentage of data completeness by country in Round 2, Round 3 cohort 1 and
Round 3 cohort 3.
92%
92%
94%
71%
71%
63%
61%
62%
20%
0%
20%
40%
60%
80%
100%
England & Wales
England
Wales
% data completeness
Round 2
Round 3 Cohort 1
Round 3 Cohort 2

10

Health Board and Trust ascertainment
Figure 3 shows the percentage of children and young people who were successfully
registered and verified on the audit data capture system by the respective Health Boards
and Trusts by the data download date (11th January 2021). Nationally, 82% (18,440/22569) of
the children and young people registered were verified. Over one third of the Health
Boards and Trusts registered and verified all the children and young people on the audit
data capture system. Some Health Boards and Trusts did not register or verify any children
and young people on the system.

Figure 3: Percentage of children and young people verified by Health Boards and Trusts in
Round 3.
Each Health Board and Trust is represented by a vertical bar in the order of the percentage
score, including those scoring 0%.
0%
20%
40%
60%
80%
100%
% of children and young people that were verified
Health Board/Trust
HB/Ts below national percentage ascertainment
HB/Ts above national percentage ascertainment
National percentage ascertainment

11

Health Board and Trust data completeness

Figure 4 below shows the percentage of children and young people verified and allocated
to Round 3, cohort 2, that had their first year of care form submitted and locked on the
data capture system, by the download date (11th January 2021). Nationally, 61% (6177/10181)
of the children allocated to cohort 2 had a submitted and locked first year of care form.
One fifth of the Health Boards and trusts did not successfully submit and lock a single first
year of care form for the children and young people allocated to cohort 2. Nearly one third
of the Health Board and Trust submitted and locked the first year of care form for all the
children allocated to cohort 2.

Figure 4: The percentage of children and young people within cohort 2 with their first
year of care form submitted and locked.
Each Health Board and Trust is represented by a vertical bar in the order of the
percentage score, including those scoring 0%.
0%
20%
40%
60%
80%
100%
% of children and young people that had their frst year of care
form locked
Health Board/Trust
HB/Ts below national percentage data completeness
HB/Ts above national percentage data completeness
National percentage data completeness

12

Description of cohort 2
Age and sex

Figure 5 shows the number of children and young people in cohort 2 by their age at the
time of their first paediatric assessment. The children and young people’s ages are given
in whole years, giving their age at their last birthday. Two children and young people were
excluded for having invalid dates of birth (birthday after first paediatric assessment).
Almost all (99.8%) of the children in cohort 2 had a known or specified sex. 15 children and
young people had their gender recorded as unknown. The largest age groups in cohort 2
were younger children; infants below one year of age, and children aged one or two years
old which is consistent with cohort 1. The number of children and young people was higher
in the younger age groups up to the age of 15, when many young people start to transition
to adult services. Boys account for 54% of the cohort 2 which is consistent with cohort 1.

Figure 5: Numbers of children and young people included in cohort 2 by age in years at
first paediatric assessment and gender. (This figure excludes 15 children with unknown
gender and two with invalid dates of birth).
0
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
Female
438 337 220 190 128 132 156 176 152 117 118 110 114 116 135 150 51
15
2
1
Male
497 309 254 246 206 198 189 193 198 169 139 158 122 113 96 155 53
7
0
0
All cohort 2 935 646 474 436 334 330 345 369 350 286 257 268 236 229 231 305 104 22
2
1
All cohort 1 509 346 302 231 190 172 163 162 151 159 148 129 143 154 150 140 49
14
0
0
0
200
400
600
800
1000
Number of children and young people in cohort 2
Age in years at first paediatric assessment

13

Figure 6 shows the number of children and young people in cohort 2 who were under
two years of age at first paediatric assessment broken down by age in months and
gender. Most children were below the age of two years and had their first paediatric
assessment either on their first month of life (150) or at seven-months old (89) which is
consistent with cohort 1.
Figure 6: Numbers of children and young people included in cohort 2 by age in months at
first paediatric assessment and gender. (This figure excludes five children with unknown
gender and two children with invalid dates of birth).
Table 4 shows the proportion of children and young people in different age groups, by
country or by paediatric epilepsy network area. Two children were excluded due to invalid
dates of birth. In cohort 2:
•
26% of the children and young people were aged between one month and two
years (26% in cohort 1),
•
20% were aged between two and four years (22% in cohort 1),
•
36% were aged between five and eleven years (33% in cohort 1),
•
18% were aged over twelve years of age (20% in cohort 1).
0
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15 16 17 18 19 20 21 22 23
Female
62 30 42 30 31 26 30 44 39 25 48 31
31 32 26 31
17 30 31 27 22 25 29 36
Male
88 45 35 40 34 35 38 45 48 42 34 13 29 28 28 23 22 36 26 22 25 25 23 22
All cohort 2 150 75 77 70 65 61 68 89 87 67 82 44 60 60 54 54 39 66 57 49 47 50 52 58
All cohort 1
81 34 44 32 44 40 33 59 44 35 29 34 37 29 31 27 31
21 29 32 31 39 18 21
0
20
40
60
80
100
120
140
160
Number of children and young people in cohort 2
Age in months at first paediatric assessment

14

Table 4: Number of children and young people in cohort 2 by country, network and age-
group. This table excludes two children with invalid dates of birth.
Country/network
% <2 years
% 2 - 4 years
% 5 - 11 years
% >=12 years
England and Wales
(N=6175)
26% (1586/6175)
20% (1249/6175)
36% (2209/6175)
18% (1131/6175)
England (N=6100)
26% (1564/6100)
20% (1237/6100)
36% (2187/6100)
18% (1112/6100)
Wales (N=75)
29% (22/75)
16% (12/75)
29% (22/75)
25% (19/75)

BRPNF (N=240)
30% (71/240)
15% (37/240)
37% (88/240)
18% (44/240)
CEWT (N=525)
27% (144/525)
21% (112/525)
34% (176/525)
18% (93/525)
EPEN (N=294)
24% (72/294)
23% (67/294)
40% (119/294)
12% (36/294)
EPIC (N=470)
22% (102/470)
21% (100/470)
40% (186/470)
17% (82/470)
NTPEN (N=389)
19% (74/389)
19% (72/389)
41% (160/389)
21% (83/389)
NWEIG (N=388)
21% (81/388)
21% (80/388)
38% (149/388)
20% (78/388)
ORENG (N=429)
24% (104/429)
20% (86/429)
36% (156/429)
19% (83/429)
PENNEC (N=671)
30% (203/671)
18% (124/671)
33% (223/671)
18% (121/671)
SETPEG (N=310)
33% (102/310)
19% (59/310)
33% (102/310)
15% (47/310)
SWEP (N=67)
31% (21/67)
12% (8/67)
30% (20/67)
27% (18/67)
SWIPE (N=524)
25% (131/524)
22% (116/524)
33% (173/524)
20% (104/524)
SWTPEG (N=747)
25% (187/747)
20% (151/747)
35% (258/747)
20% (151/747)
TEN (N=457)
27% (123/457)
23% (104/457)
35% (159/457)
16% (71/457)
WPNN (N=168)
31% (52/168)
19% (32/168)
34% (57/168)
16% (27/168)
YPEN (N=496)
24% (119/496)
20% (101/496)
37% (183/496)
19% (93/496)

15

Table 5 (below) shows the median age of children allocated to Round 3 cohort 2 was similar
to cohort 1 (5 years old). 46% of the children were female which is consistent in the four
rounds. Round 3 cohort 2 had the largest sample (6177). The sample window for Round 1,
Round 2, Round 3 cohort 1, Round 3 cohort 2 were: 6 months, 4 months and 4.5 months
and 12 months respectively, hence the difference in cohort sizes.

Table 5: Demographic characteristics of children included in Round 1, 2 and 3 of Epilepsy12.

Round 1
Round 2
Round 3 cohort 1
Round 3 cohort 2

UK
England
Wales
UK
England
Wales
UK
England
Wales
UK
England
Wales
N
4310
4085
225
3072
2907
165
3318
3195
123
6177
6102
75
% Female
46%
46%
49%
45%
45%
45%
45%
45%
48%
46%
46%
55%
Median age
(years)
-
6.4
7.5
-
5.3
5.9
5.4
5.4
5.3
5.0
5.0
5.0
25th centile
(years)
-
2.2
3.1
-
2
2.5
1.8
1.8
2.3
1.0
1.0
1.0
75th centile
(years)
-
10.7
12.1
-
10.2
10.3
10.6
10.6
10.7
10.0
10.0
12.0
Infants (1
month to < 2
years)
23%
23%
18%
25%
25%
21%
26%
26%
21%
26%
26%
29%
Pre-school (2-
4 years)
20%
20%
17%
24%
24%
21%
22%
22%
27%
20%
20%
16%
School (5-11
years)
37%
37%
39%
34%
34%
39%
33%
33%
33%
36%
36%
29%
Young people
(12-15 years)
19%
19%
25%
17%
17%
19%
18%
18%
17%
16%
16%
21%
-
Comparable data is not available for Rounds 1 and 2

16

Figure 7 shows the overall proportions of the children and young people by age groups
are similar in Round 1, Round 2, Round 3 cohort 1 and cohort 2. The largest age-group in
the four rounds are school age children between 5 to 11 years.

Figure 7: Comparison of the proportion of children and young people by age group in
Round 1, Round 2, Round 3 cohort 1 and cohort 2.

Deprivation
Table 6 shows the breakdown of children and young people in Epilepsy12 cohort 2 by
deprivation quintile derived by matching home postcodes to the English (IMD, 2019) and
Welsh (WIMD, 2019) indices of multiple deprivation data. A small proportion 59 (1%) of
children and young people could not be allocated to a deprivation quintile, because their
postcodes were invalid or did not match lower super output area (LSOA).

16%
36%
20%
26%
18%
33%
22%
26%
17%
34%
24%
25%
19%
37%
20%
23%
0%
10%
20%
30%
40%
12- 15 years
5 - 11 years
2 - 4 years
0 - 2 years
% of children and young people
Age group
Round 1
Round 2
Round 3 Cohort 1
Round 3 Cohort 2

17

Table 6: Percentage and number of children and young people in cohort 2 by deprivation
by country and network.
Country/network
Most deprived
Second most
deprived
Third least
deprived
Second least
deprived
Least deprived
England and Wales
(N=6118)
28% (1737/6118)
20% (1224/6118)
19% (1135/6118)
17% (1022/6118)
16% (1000/6118)
England (N=6043)
28% (1715/6043)
20% (1197/6043)
19% (1122/6043)
17% (1016/6043)
16% (993/6043)
Wales (N=75)
29% (22/75)
36% (27/75)
17% (13/75)
8% (6/75)
9% (7/75)

BRPNF (N=237)
26% (61/237)
17% (41/237)
17% (41/237)
22% (53/237)
17% (41/237)
CEWT (N=521)
34% (176/521)
18% (93/521)
17% (86/521)
16% (85/521)
16% (81/521)
EPEN (N=288)
17% (49/288)
23% (67/288)
24% (70/288)
14% (40/288)
22% (62/288)
EPIC (N=468)
52% (242/468)
15% (68/468)
11% (53/468)
13% (62/468)
9% (43/468)
NTPEN (N=385)
25% (98/385)
30% (117/385)
23% (90/385)
14% (53/385)
7% (27/385)
NWEIG (N=385)
48% (185/385)
19% (73/385)
14% (55/385)
10% (40/385)
8% (32/385)
ORENG (N=425)
13% (55/425)
17% (72/425)
18% (78/425)
24% (101/425)
28% (119/425)
PENNEC (N=660)
46% (301/660)
24% (156/660)
12% (79/660)
12% (77/660)
7% (47/660)
SETPEG (N=308)
23% (72/308)
18% (56/308)
23% (72/308)
21% (65/308)
14% (43/308)
SWEP (N=67)
33% (22/67)
36% (24/67)
15% (10/67)
7% (5/67)
9% (6/67)
SWIPE (N=522)
13% (66/522)
25% (132/522)
30% (157/522)
18% (96/522)
14% (71/522)
SWTPEG (N=739)
4% (26/739)
15% (112/739)
19% (142/739)
24% (175/739)
38% (284/739)
TEN (N=452)
43% (196/452)
21% (96/452)
15% (66/452)
13% (60/452)
8% (34/452)
WPNN (N=167)
10% (17/167)
17% (28/167)
30% (50/167)
22% (37/167)
21% (35/167)
YPEN (N=494)
35% (171/494)
18% (89/494)
17% (86/494)
15% (73/494)
15% (75/494)

18

Figure 8 shows that the proportion of children and young people in cohort 2 living in the
most deprived quintiles was higher and this is consistent with cohort 1.
Figure 9 shows the deprivation indices for children and young people’s home addresses
by regional paediatric epilepsy networks. This shows that there is considerable variation
between networks which is consistent with cohort 1.

Figure 8: Percentage of children and young people in the cohorts by deprivation quintile
in England and Wales combined.

28%
22%
19%
17%
14%
28%
20%
19%
17%
16%
0%
5%
10%
15%
20%
25%
30%
Most deprived
Second most
deprived
Third least
deprived
Second least
deprived
Least deprived
% of children and young people in the cohort
Deprivation quintile
Round 3 cohort 1
Round 3 cohort 2

19

Figure 9 shows a comparison of the proportion of children and young people by
deprivation quintile and by country/network.

Figure 9: Percentage of children and young people in cohort 2 by deprivation by
country/network.
35%
10%
43%
4%
13%
33%
23%
46%
13%
48%
25%
52%
17%
34%
26%
29%
28%
28%
18%
17%
21%
15%
25%
36%
18%
24%
17%
19%
30%
15%
23%
18%
17%
36%
20%
20%
17%
30%
15%
19%
30%
15%
23%
12%
18%
14%
23%
11%
24%
17%
17%
17%
19%
19%
15%
22%
13%
24%
18%
7%
21%
12%
24%
10%
14%
13%
14%
16%
22%
8%
17%
17%
15%
21%
8%
38%
14%
9%
14%
7%
28%
8%
7%
9%
22%
16%
17%
9%
16%
16%
0%
20%
40%
60%
80%
100%
YPEN
WPNN
TEN
SWTPEG
SWIPE
SWEP
SETPEG
PENNEC
ORENG
NWEIG
NTPEN
EPIC
EPEN
CEWT
BRPNF
WAL
ENG
ENG&WAL
% of children and young people in cohort 2
Country/Network
Most deprived
Second most deprived
Third least deprived
Second least deprived
Least deprived

20

Diagnostic status
Prior experience of seizures
Table 7 shows that over 500 children and young people in Round 3 cohort 2 were uncertain
whether they had prior experience of neonatal, febrile or acute symptomatic seizures.
•
3% (162/6177) had prior experience of neonatal seizures.
•
9% (562/6177) had prior experience of febrile seizures.
•
8% (476/6177) had prior experience of acute symptomatic seizures.
Most children and young people did not have any prior experience of neonatal, febrile or
acute symptomatic seizures in cohort 2 which is consistent with cohort 1 (Figure 10).
Table 7: Prior experience of seizures in children and young people in cohort 2 in England
and Wales.
Description of neonatal seizures
% with prior
seizures
% without prior
seizures
% Uncertain about
prior seizures
Neonatal seizure(s)
3% (162/6177)
88% (5455/6177)
9% (560/6177)
Febrile seizure(s)
9% (562/6177)
81% (5021/6177)
10% (594/6177)
Acute symptomatic seizure (s)
8% (476/6177)
84% (5176/6177)
8% (525/6177)

Figure 10: Percentage of children and young people with/without prior experience of
seizures.
3%
3%
8%
9%
6%
8%
85%
88%
81%
81%
83%
84%
12%
9%
11%
10%
10%
8%
0%
20%
40%
60%
80%
100%
Cohort 1
Cohort 2
Cohort 1
Cohort 2
Cohort 1
Cohort 2
Neonatal seizure(s)
Febrile seizure(s)
Acute symptomatic seizure(s)
% of children and young people in
the cohort
Prior experince of seizures
Yes
No
Uncertain

21

Table 8 shows the diagnostic status of children and young people in cohort 2 in the first
year of care in England and Wales combined. 34% (2106/6177) children and young people
were diagnosed with epilepsy in cohort 2. Of these, 33% (2028/6177) had two or more
epileptic episodes more than 24 hours apart and 1% (78/6177) were diagnosed with
epilepsy for other reasons.

Figure 11 shows the percentages of children and young people in cohort 2 by diagnostic
status in England and Wales.

Table 8: Diagnostic status at first year of care by country and network.

Country/
network

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
England and
Wales (N=6177)
33% (2028/6177)
1% (78/6177)
3% (172/6177)
1% (63/6177)
43% (2644/6177)
19% (1192/6177)
England (N=6102)
33% (2008/6102)
1% (78/6102)
*
1% (63/6102)
43% (2595/6102)
*
Wales (N=75)
27% (20/75)
0% (0/75)
*
0% (0/75)
65% (49/75)
*
BRPNF (N=240)
34% (82/240)
2% (5/240)
5% (12/240)
0% (0/240)
35% (84/240)
24% (57/240)
CEWT (N=525)
29% (151/525)
0% (2/525)
4% (19/525)
2% (9/525)
41% (217/525)
24% (127/525)
EPEN (N=294)
30% (87/294)
*
4% (13/294)
*
43% (125/294)
19% (56/294)
EPIC (N=470)
47% (221/470)
*
*
1% (4/470)
34% (162/470)
16% (76/470)
NTPEN (N=390)
49% (191/390)
0% (0/390)
4% (16/390)
2% (9/390)
28% (111/390)
16% (63/390)
NWEIG (N=389)
32% (123/389)
*
*
*
38% (148/389)
29% (114/389)
ORENG (N=429)
28% (119/429)
*
3% (14/429)
*
39% (166/429)
29% (123/429)
PENNEC (N=671)
34% (228/671)
3% (17/671)
4% (30/671)
2% (15/671)
39% (262/671)
18% (119/671)
SETPEG (N=310)
25% (76/310)
5% (14/310)
2% (6/310)
*
49% (152/310)
19% (58/310)
SWEP (N=67)
22% (15/67)
0% (0/67)
*
*
69% (46/67)
*
SWIPE (N=524)
36% (188/524)
*
1% (6/524)
*
48% (252/524)
14% (73/524)
SWTPEG (N=747)
27% (204/747)
3% (19/747)
4% (28/747)
*
52% xx-xxxx-xxxx)
14% (105/747)
TEN (N=457)
26% (117/457)
*
*
1% (5/457)
49% (223/457)
24% (108/457)
WPNN (N=168)
34% (57/168)
*
3% (5/168)
0% (0/168)
52% (88/168)
*
YPEN (N=496)
34% xx-xxxx-xxxx)
*
2% (10/496)
*
44% (220/496)
19% (93/496)
* In accordance with information governance rules, potentially sensitive data based small numbers have been masked

22

Figure 11: Percentage of children and young people in Cohort 2 by diagnostic status at
first year of care, in England and Wales.

Table 9 shows the diagnostic status of children and young people in cohort 2 in the first
paediatric assessment. 30% (1872/6177) children and young people were diagnosed with
epilepsy in cohort 2 in the first paediatric assessment. Of these, 29% (1790/6177) had two
or more epileptic episodes more than 24 hours apart and 1% (82/6177) were diagnosed
with epilepsy for other reasons. The number of children where there remains uncertainty
as to whether the episodes were epileptic or not, reduced from 34% (2117/6177) in the first
paediatric assessment, to 19% (1192/6177) in the first year of care (Figure 12).

Epilepsy: 2 or
more epileptic
episodes more
than 24 hours
apart
33%
Epilepsy: other
reason
1%
Not epilepsy:
single epileptic
episode
3%
Not epilepsy: cluster of
epileptic episodes
within 24 hours
1%
Non-epileptic
episode (s)
43%
Uncertain
episodes
19%

23

Table 9: Diagnostic status at first paediatric assessment by country and network.

Country/ network
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
England and
Wales (N=6177)
29% (1790/6177)
1% (82/6177)
4% (232/6177)
2% (95/6177)
30% (1861/6177)
34% (2117/6177)
England (N=6102)
29% (1765/6102)
*
*
*
30% (1826/6102)
34% (2105/6102)
Wales (N=75)
33% (25/75)
*
*
*
47% (35/75)
16% (12/75)

BRPNF (N=240)
32% (77/240)
*
6% (14/240)
*
18% (44/240)
40% (95/240)
CEWT (N=525)
25% (129/525)
0% (0/525)
6% (29/525)
3% (15/525)
33% (171/525)
34% (181/525)
EPEN (N=294)
32% (93/294)
2% (6/294)
6% (17/294)
0% (0/294)
29% (86/294)
31% (92/294)
EPIC (N=470)
49% (228/470)
1% (7/470)
1% (7/470)
1% (5/470)
21% (100/470)
26% (123/470)
NTPEN (N=390)
47% (185/390)
1% (5/390)
4% (16/390)
2% (8/390)
23% (89/390)
22% (87/390)
NWEIG (N=389)
20% (77/389)
*
*
*
22% (85/389)
57% (221/389)
ORENG (N=429)
19% (80/429)
*
7% (29/429)
*
16% (70/429)
54% (231/429)
PENNEC (N=671)
30% (198/671)
2% (14/671)
4% (30/671)
2% (16/671)
31% (205/671)
31% (208/671)
SETPEG (N=310)
24% (75/310)
3% (10/310)
2% (6/310)
2% (5/310)
44% (136/310)
25% (78/310)
SWEP (N=67)
30% (20/67)
*
*
*
49% (33/67)
16% (11/67)
SWIPE (N=524)
33% (173/524)
1% (5/524)
4% (19/524)
1% (6/524)
32% xx-xxxx-xxxx)
29% (152/524)
SWTPEG (N=747)
23% (172/747)
*
5% (34/747)
*
42% (316/747)
27% (202/747)
TEN (N=457)
26% (119/457)
0% (0/457)
1% (5/457)
2% (7/457)
42% (191/457)
30% (135/457)
WPNN (N=168)
25% (42/168)
*
4% (7/168)
*
21% (35/168)
48% (80/168)
YPEN (N=496)

25% (122/496)
0% (2/496)
3% (13/496)
1% (7/496)
26% (131/496)
45% (221/496)
* In accordance with information governance rules, potentially sensitive data based small numbers have been masked

24

Figure 12: Percentage of children and young people by diagnostic status in first paediatric
assessment and first year of care in England and Wales, in Round 3 cohort 2.
Figure 13 shows a comparison of diagnostic status by Round 1, Round 2, Round 3 cohort 1
and cohort 2 in the first paediatric assessment and 12 months after first paediatric
assessment.
More children and young people were diagnosed with epilepsy 12 months after first
paediatric assessment compared to the first paediatric assessment. This is a trend in
Round 1, Round 2, Round 3 cohort 1 and cohort 2.
Approximately one third of children and young people in the cohorts were diagnosed with
epilepsy 12 months after first paediatric assessment across Round 1, Round 2 and Round 3
cohort 1 and Round 3 cohort 2.

19%
43%
1%
3%
1%
33%
34%
30%
2%
4%
1%
29%
0%
10%
20%
30%
40%
50%
Uncertain episodes
Non-epileptic episode(s)
Not epilepsy: cluster of epileptic
episodes within 24 hours
Not epilepsy: single
epileptic episode
Epilepsy: other reason
Epilepsy: 2 or more epileptic
episodes more than 24 hours apart
% of children and young people in cohort 2
Diagnostic status
First paediatric assessment
First year of care

25

The proportion of children and young people where there was uncertainty whether the
episodes were epileptic or not is higher in the first paediatric assessment compared to 12
months after first paediatric assessment across all the Rounds.

Figure 13: Diagnosis at first assessment and one year after first assessment in Round 1,
Round 2, Round 3 cohort 1 and cohort 2.

36%
18%
16%
30%
14%
45%
5%
36%
42%
15%
10%
34%
9%
44%
12%
35%
35%
27%
6%
31%
23%
38%
5%
34%
34%
30%
5%
30%
19%
43%
4%
34%
0%
10%
20%
30%
40%
50%
Uncertain
episodes
Non-epileptic
episode (s)
Single epileptic
seizure (or cluster)
Epilepsy
Uncertain
episodes
Non-epileptic
episode (s)
Single epileptic
seizure (or cluster)
Epilepsy
At first
paediatric assessment
One year after
first paediatric assessment
% of children and young people
Round 1
Round 2
Round 3 cohort 1
Round 3 cohort 2

26

Non-epileptic episodes
Table 10 shows a description of the non-epileptic episodes recorded for children in cohort
2. The proportion of children and young people with non-epileptic episodes was
comparable in Round 3 cohort 2 and cohort 1. The percentage of children with behavioural,
psychological and psychiatric disorders in cohort 2 (19%) was slightly higher than cohort 1
(16%) as shown in Figure 14.
Table 10: Description of non-epileptic episodes in children in cohort 2 at one year after
first assessment in England and Wales.
Description of non-epileptic episodes
Percentage of children and
young people in cohort 1
Percentage of children and
young people in cohort 2
Syncope and Anoxic Seizures
6% (215/3318)
6% (398/6177)
Behavioural, Psychological and
Psychiatric Disorders
16% (541/3318)
19% (1197/6177)
Sleep Related Conditions
2% (77/3318)
2% (139/6177)
Paroxysmal Movement Disorders
3% (103/3318)
4% (225/6177)
Migraine Associated Disorders
1% (22/3318)
1% (57/6177)
Miscellaneous Events
2% (71/3318)
2% (121/6177)
Other
16% (535/3318)
16% (963/6177)
Figure 14: Percentage of children and young people by description of non-epileptic
episode.
1%
2%
2%
4%
6%
16%
19%
1%
2%
2%
3%
6%
16%
16%
0%
5%
10%
15%
20%
Migraine Associated Disorders
Miscellaneous Events
Sleep Related Conditions
Paroxysmal Movement Disorders
Syncope And Anoxic Seizures
Other
Behavioral, Psychological And Psychiatric
Disorders
% of children and young people in the cohort
Description of non-epileptic episode
Cohort 1
Cohort 2

27

Initial referral and examination
Referring service to first paediatric assessment
Table 11 shows the service from which a referral was made for a first paediatric assessment
for children and young people who were diagnosed with epilepsy in cohort 2. Majority of
children and young people diagnosed with epilepsy in England and Wales were referred
by the emergency department (ED) 40% (834/2106) or had a referral from the general
practitioner (GP) 36% (768/2106).
Figure 15 shows the percentage of referrals received from different services in England
and Wales in cohort 2 and cohort 1.
Table 11: Referring service to first paediatric assessment by country.
Country
% ED
% GP
% Health
Visitor
%
Outpatient
paediatrics
% Inpatient
paediatrics
% PICU
%
Neonatal
care
% Other
England
and Wales
(N=2106)
40%
(834/2106)
36% (768/2106)
<1% (1/2106)
9%
(188/2106)
10%
(210/2106)
1%
(15/2106)
1%
(18/2106)
3%
(72/2106)
England
(N=2086)
40%
(829/2086
)
36% (757/2086)
<1% (1/2086)
9%
(187/2086)
10%
(208/2086)
1%
(15/2086)
1%
(18/2086)
3%
(71/2086)
Wales
(N=20)
25% (5/20)
55% (11/20)
0% (0/20)
5% (1/20)
10% (2/20)
0% (0/20)
0% (0/20)
5% (1/20)

Figure 15: Referring service to first paediatric assessment in England and Wales.
40%
36%
12%
8%
3%
<1%
1%
<1%
40%
36%
10%
9%
3%
1%
1%
<1%
0%
10%
20%
30%
40%
50%
ED
GP
Inpatient
paediatrics
Outpatient
paediatrics
Other
PICU
Neonatal
care
Health
Visitor
% of children and young people diagnosed
with epilepsy
Reffering service to first paediatric assessment
Cohort 1
Cohort 2

28

Time since first referral to first paediatric assessment
17% (348/2106) of the children and young people diagnosed with epilepsy had not received
input from a paediatrician with expertise in epilepsies.
11% (224/2106) of the children diagnosed with epilepsy had a date of referral to first
paediatric assessment recorded as unknown.
<1% (9/2106) had an invalid date of referral to first paediatric assessment (date of referral
to first paediatric assessment was recorded as occurring after the date input from a
paediatrician with expertise in epilepsy was achieved and therefore interpreted as invalid).
75% (1583/2106) of children and young people diagnosed with epilepsy had a valid date
entered describing referral to first paediatric assessment.
NICE guidelines (Quality Statement 1) state that children and young people presenting
with a suspected seizure are seen by a specialist in the diagnosis and management of the
epilepsies within 2 weeks of presentation.
In Round 3, cohort 2, 19% (392/2106) children and young people diagnosed with epilepsy
were seen by a paediatrician with expertise in epilepsy within 2 weeks of first referral in
England and Wales (Table 12a).
The proportion of children and young people diagnosed with epilepsy that were seen by
a paediatrician with expertise in epilepsy within 2 weeks of first referral in England and
Wales increased from 16% in cohort 1 to 19% in cohort 2 (Figure 16a). There was a slight
reduction in the proportion of children and young people seen by a paediatrician with
expertise in epilepsies after 12 weeks in cohort 2 compared to cohort 1.
Table 12a: Time in weeks to achieving input from paediatrician with expertise in epilepsy
since the first referral to paediatrics by country.
Country
0 - 2 weeks
2 - 4 weeks
4 - 8 weeks
8- 12 weeks
12 - 16 weeks
>16 weeks
England
and Wales
(N=2106)
19% (392/2106)
10% (211/2106)
16% (335/2106)
10% (217/2106)
6% (122/2106)
15% (306/2106)
England
(N=2086)
19%
(388/2086)
10% (210/2086)
16% (331/2086)
10% (215/2086)
6% (120/2086)
14% (301/2086)
Wales
(N=20)
20% (4/20)
5% (1/20)
20% (4/20)
10% (2/20)
10% (2/20)
25% (5/20)
Only the children with valid date of referral were included in this table. Therefore, the percentages do not add
up to 100%.

29

Figure 16a: Time since first referral to first paediatric assessment in England and Wales.
75% (1583/2106) of children and young people diagnosed with epilepsy had a valid date
entered describing referral to first paediatric assessment. Nineteen of these could not be
allocated to a deprivation quintile, because their postcodes were invalid or did not match
lower super output area (LSOA). 74% (1564/2106) were included for the analysis in Table
12b.
More than one quarter (28%) of children that were seen by paediatrician with expertise in
epilepsy after sixteen weeks were in the most deprived quintile, Figure 16b.
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.

Most deprived
Second most
deprived
Third least
deprived
Second least
deprived
Least
deprived
0 - 2 weeks (N=388)
26% (101/388)
21% (82/388)
22% (85/388)
15% (60/388)
15% (60/388)
2 - 4 weeks (N=207)
26% (54/207)
18% (37/207)
18% (38/207)
17% (36/207)
20% (42/207)
4 - 8 weeks (N=329)
25% (83/329)
19% (61/329)
23% (75/329)
17% (57/329)
16% (53/329)
8- 12 weeks (N=215)
36% (77/215)
19% (40/215)
18% (38/215)
14% (30/215)
14% (30/215)
12 - 16 weeks (N=120)
24% (29/120)
30% (36/120)
16% (19/120)
15% (18/120)
15% (18/120)
>16 weeks (N=305)
28% (85/305)
21% (63/305)
18% (54/305)
16% (48/305)
18% (55/305)

16%
8%
16%
9%
7%
16%
19%
10%
16%
10%
6%
15%
0%
5%
10%
15%
20%
0 - 2 weeks
2 - 4 weeks
4 - 8 weeks
8- 12 weeks
12 - 16 weeks
>16 weeks
% of children and young peple diagnosed
with epilepsy
Time since first referral to first paediatric assessment
Round 3 Cohort 1
Round 3 Cohort 2

30

Figure 16b: Time since first referral to first paediatric assessment by deprivation quintile
in England and Wales.

Age at first paediatric assessment
Figure 17 shows the number of children and young people diagnosed with epilepsy in
cohort 2 by their age and gender at the time of their first paediatric assessment.
The largest age group was younger children; infants below one years of age. There were
more males than females diagnosed with epilepsy in cohort 2, 1160 males and 946 females.
26%
26%
25%
36%
24%
28%
21%
18%
19%
19%
30%
21%
22%
18%
23%
18%
16%
18%
15%
17%
17%
14%
15%
16%
15%
20%
16%
14%
15%
18%
0%
20%
40%
60%
80%
100%
0 - 2 weeks
2 - 4 weeks
4 - 8 weeks
8- 12 weeks
12 - 16 weeks
>16 weeks
% of children and young people diagnosed with
epilepsy
Most deprived
Second most deprived
Third least deprived
Second least deprived
Least deprived

31

Figure 17: Numbers of children and young people diagnosed with epilepsy by age in
years at first paediatric assessment and gender in England and Wales.

Setting of the first paediatric assessment
In England and Wales, 50% (1044/2106) of children and young people diagnosed with
epilepsy had their first paediatric assessment in an acute setting. An equal proportion of
children and young people had their first assessment in non-acute setting 50%
(1054/2106) as shown on Table 13.
Figure 18 shows a comparison of the setting of first paediatric assessment in Round 1,
Round 2 and Round 3, cohort 1 and cohort 2, in England and Wales. The proportion of
children and young people diagnosed with epilepsy who had their first paediatric
assessment in acute setting has been increasing across the cohorts.
82
61
43
42
61
49
78
82
70
53
60
51
45
50
53
45
21
0
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16+
130
63
75
77
70
68
77
65
88
79
64
67
50
50
44
70
23
Female
Male
Age

32

Table 13: Setting of the first paediatric assessment by country.
Country
% Acute
% Non-acute
% Don't know
England and Wales (N=2106)
50% (1044/2106)
50% (1054/2106)
<1% (8/2106)
England (N=2086)
50% (1034/2086)
50% (1044/2086)
<1% (8/2086)
Wales (N=20)
50% (10/20)
50% (10/20)
0% (0/20)

Figure 18: Setting of first paediatric assessment in Round 1, Round 2 and Round 3 cohort
1 and cohort 2 in England and Wales.

43%
57%
<1%
45%
54%
1%
48%
52%
<1%
50%
50%
<1%
0%
10%
20%
30%
40%
50%
60%
Acute
Non-acute
Don't know
% of children and young people diagnosed
with epilepsy
Setting of first paediatric asssessment
Round 1
Round 2
Round 3 cohort 1
Round 3 cohort 2

33

Appropriate first assessment
Performance indicator 4: Appropriate first paediatric
assessment
In Round 3, cohort 2, 61% (1281/2106) of children and young people diagnosed with
epilepsy had appropriate first paediatric assessment, (Table 14). There was a slight
reduction in the proportion of children and young people that had appropriate first
paediatric assessment in cohort 2 (61%) compared to cohort 1 (62%). This indicator ranged
from 0% to 100% and had an interquartile range of 44% to 76%.
Table 14: Appropriate first paediatric assessment.

Evidence of an appropriate
assessment
Audit Rounds
England and
Wales
England
Wales
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)
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)
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)
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)
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)

34

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)
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)
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)

Figure 19: Appropriate first paediatric assessment by unit, Round 3, cohort 2
Each Health Board or Trust is represented by a vertical bar in the order of the percentage
score, including those scoring 0% in this graph.
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Health Board/Trust
Cohort 2 National perfomance

35

Description of episodes
Seizure type
Table 15 shows, 40 children and young people diagnosed with epilepsy had more than three
seizures by year one in England and Wales.
Table 16 shows 92% (1948/2106) of the children and young people diagnosed with epilepsy in
England and Wales at one year, had an epileptic seizure defined. Some children had more than
one seizure type identified.
In 13% (269/2106) children and young people diagnosed with epilepsy, there were also episodes
where there was uncertainty whether the seizures were epileptic or not. 1% (16/2106) of children
with epilepsy had non-epileptic seizures identified.
Table 15: Number of seizures in children diagnosed with epilepsy, Round 3, cohort 1 and cohort
2.
Country
Audit Round
1 seizure
2 seizures
3 seizures
More than 3
seizures

England and
Wales
Cohort 1
82% (908/1112)
12% (137/1112)
4% (39/1112)
3% (28/1112)
Cohort 2
83% (1739/2106)
13% (273/2106)
3% (54/2106)
2% (40/2106)

Table 16: Seizure type, Round 3, cohort 1 and cohort 2.
Country
Audit Round
% with epileptic
seizures
% with non-
epileptic seizures
% with uncertain
seizures

England and
Wales
Cohort 1
91% (1012/1112)
1% (10/1112)
15% xx-xxxx-xxxx)
Cohort 2
92% (1948/2106)
1% (16/2106)
13% (269/2106)

36

Epileptic seizure type
1% (16/2106) children and young people diagnosed with epilepsy had more than three epileptic
seizures by year one in England and Wales (Table 17).
Table 17: Epileptic seizure type, Round 3, cohort 1 and cohort 2.
Country
Audit Round
1 epileptic
seizure
2 epileptic
seizures
3 epileptic
seizures
More than 3
epileptic
seizures

England and
Wales
Cohort 1
78% (866/1112)
9% (99/1112)
2% (27/1112)
2% (20/1112)
Cohort 2
80% xx-xxxx-xxxx)
10% (201/2106)
3% (59/2106)
1% (16/2106)

Figure 20 shows that in England and Wales, children and young people diagnosed with
epilepsy:
•
47% (993/2106) had generalised onset epileptic seizures,
•
35% (736/2106) had focal onset epileptic seizures,
•
9% (196/2106) had unknown onset epileptic seizures,
•
4% (83/2106) had unclassified epileptic seizures.

Figure 20: Percentage of children diagnosed with epilepsy by epileptic seizure type in England
and Wales.
45%
33%
11%
4%
47%
35%
9%
4%
0%
10%
20%
30%
40%
50%
Generalised onset
Focal onset
Unknown onset
Unclassified
% of children and young people
diagnosed with epilepsy
Epileptic seizure type
Cohort 1
Cohort 2

37

Focal onset
Table 18 shows the proportion of children and young people diagnosed with epilepsy who had
focal onset seizures during their first year of care in England and Wales. There were 322 (15%)
children and young people who had impaired awareness focal onset seizures. This was the most
common characteristic where a focal onset seizure was recorded in both cohorts.
Table 18: Percentage of children and young people diagnosed with epilepsy who had focal onset
seizures in England and Wales.

Focal Onset seizures
Round 3 cohort 1 (N=1112)
Round 3 cohort 2 (N=2106)
Impaired awareness
174 (16%)
322 (15%)
Focal to bilateral tonic-
clonic
91 (8%)
170 (8%)
Clonic
66 (6%)
141 (7%)
Left
78 (7%)
136 (6%)
Tonic
56 (5%)
120 (6%)
Right
64 (6%)
106 (5%)
Behaviour arrest
35 (3%)
96 (5%)
Centro-temporal
51 (5%)
84 (4%)
Automatisms
33 (3%)
59 (3%)
Temporal
40 (4%)
54 (3%)
Sensory
18 (2%)
37 (2%)
Frontal
22 (2%)
37 (2%)
Other
12 (1%)
33 (2%)
Autonomic
11 (1%)
30 (1%)
Occipital
10 (1%)
25 (1%)
Parietal
*
20 (1%)
Epileptic spasms
5 (<1%)
15 (1%)
Myoclonic
*
15 (1%)
Emotional
5 (<1%)
13 (1%)
Cognitive
*
9 (<1%)
Atonic
7 (1%)
6 (<1%)
Gelastic
*
*
Hyperkinetic
*
*
* In accordance with information governance rules, potentially sensitive data based small numbers have been masked

38

Out of the 736 children and young people diagnosed with epilepsy with focal onset seizures in
cohort 2, 44% had impaired awareness seizures in England and Wales, (Figure 21). In cohort 1,
out of the 370 of children and young people diagnosed with epilepsy with focal onset seizures,
47% had impaired awareness seizures.

Figure 21: Percentage of children and young people diagnosed with epilepsy who had focal
onset seizures in England and Wales, Round 3, cohort 1 and cohort 2.
44%
23%
19%
18%
16%
14%
13%
11%
8%
7%
5%
5%
4%
4%
3%
3%
2%
2%
2%
1%
1%
<1%
<1%
47%
25%
18%
21%
15%
17%
9%
14%
9%
11%
5%
6%
3%
3%
3%
1%
1%
1%
1%
1%
2%
1%
1%
0%
10%
20%
30%
40%
50%
Impaired awareness
Focal to bilateral tonic-clonic
Clonic
Left
Tonic
Right
Behaviour arrest
Centro-temporal
Automatisms
Temporal
Sensory
Frontal
Other
Autonomic
Occipital
Parietal
Epileptic spasms
Myoclonic
Emotional
Cognitive
Atonic
Gelastic
Hyperkinetic
% of children and young people diagnosed with epilepsy that had focal
onset seizures
Focal onset seizures
Cohort 1
Cohort 2

39

Generalised onset
Table 19 shows the proportion of children and young people diagnosed with epilepsy who had
generalised onset seizures during their first year of care in England and Wales. 475 (23%) of
children and young people diagnosed with epilepsy had generalised onset tonic-clonic seizures.
This was the most common characteristic where a generalised onset seizure was recorded in
both cohorts.
Table 19: Percentage of children and young people diagnosed with epilepsy who had
generalised onset seizures in England and Wales.

General Onset Seizures

Round 3 cohort 1 (N=1112)

Round 3 cohort 2 (N=2106)
Tonic-clonic
258 (23%)
475 (23%)
Typical absence
138 (12%)
312 (15%)
Myoclonic
42 (4%)
72 (3%)
Atypical absence
46 (4%)
65 (3%)
Epileptic spasms
14 (1%)
40 (2%)
Other
8 (1%)
24 (1%)
Tonic
24 (2%)
22 (1%)
Atonic
12 (1%)
17 (1%)
Myoclonic-tonic-clonic
11 (1%)
16 (1%)
Absence with eyelid
myoclonia
10 (1%)
15 (1%)
Myoclonic absence
9 (1%)
15 (1%)
Clonic
*
*
Myoclonic-atonic
*
*
* In accordance with information governance rules, potentially sensitive data based small numbers have been masked

40

In cohort 2, out of the 993 children and young people diagnosed with epilepsy with generalised
onset seizures, 48%, had tonic-clonic seizures in England and Wales, 51% in cohort 1. Figure 22.

Figure 22: Percentage of children and young people diagnosed with epilepsy who had
generalised onset seizures in England and Wales, Round 3, cohort 1 and cohort 2.

Unknown onset
Table 20 shows, 143 (7%) of children and young people diagnosed with epilepsy had unknown
onset seizures in England and Wales in cohort 2. A similar proportion was reported in cohort 1.

48%
31%
7%
7%
4%
2%
2%
2%
2%
2%
2%
2%
<1%
51%
27%
8%
9%
3%
2%
5%
2%
2%
2%
2%
<1%
<1%
0%
10%
20%
30%
40%
50%
60%
Tonic-clonic
Typical absence
Myoclonic
Atypical absence
Epileptic spasms
Other
Tonic
Atonic
Myoclonic-tonic-clonic
Absence with eyelid myoclonia
Myoclonic absence
Clonic
Myoclonic-atonic
% of children and young people diagnosed with epilepsy that had generalised
seizures
Generalised onset seizures
Cohort 1
Cohort 2

41

Table 20: Percentage of children and young people diagnosed with epilepsy who had unknown
onset seizures in England and Wales.
Unknown Onset Seizures
Round 3, cohort 1 (N=1112)
Round 3 cohort 2 (N=2106)
Tonic-clonic
85 (8%)
143 (7%)
Other
16 (1%)
30 (1%)
Behaviour arrest
25 (2%)
21 (1%)
Epileptic spasms
11 (1%)
13 (1%)

Out of the 196 children and young people diagnosed with epilepsy with unknown onset seizures,
73% had tonic-clonic seizures in England and Wales in cohort 2, compared to 68% in cohort 1.
(Figure 23).

Figure 23: Percentage of children and young people diagnosed with epilepsy that had unknown
onset seizures in England and Wales.

Non-epileptic seizure type
There were 16 children and young people diagnosed with epilepsy who had non-epileptic
seizures. 3 (19%) of the children and young people diagnosed with epilepsy had non-epileptic
seizures and behavioural, psychological or psychiatric disorders. 3 (19%) had non-epileptic
seizures and syncope and anoxic Seizures.
68%
13%
20%
9%
73%
15%
11%
7%
0%
10%
20%
30%
40%
50%
60%
70%
80%
Tonic-clonic
Other
Behaviour arrest
Epileptic spasms
Unknown onset seizures
% of children and young people diagnosed with epilepsy with unknown
onset seizures
Cohort 1
Cohort 2

42

Electroclinical syndrome
914 children and young people diagnosed with epilepsy had International League Against
Epilepsy (ILAE) classification. Three children had more than one International League Against
Epilepsy (ILAE) classification. ILAE classifications are shown in Figure 24, where the
electroclinical syndrome was recorded for at least one child or young person.

Figure 24: Percentage of children and young people diagnosed with epilepsy by electroclinical
syndrome in England and Wales, Round 3, cohort 1 and cohort 2.

<1%
<1%
<1%
<1%
<1%
1%
1%
1%
2%
2%
2%
2%
3%
3%
3%
6%
7%
8%
<1%
1%
<1%
1%
<1%
1%
1%
1%
1%
3%
3%
5%
4%
6%
4%
9%
7%
7%
0%
1%
2%
3%
4%
5%
6%
7%
8%
9%
Parietal lobe epilepsy
Eyelid myoclonia with absences
Epilepsy with myoclonic absences
Panayiotopoulos syndrome
(Early onset (benign)
Generalized Epilepsies with
Febrile seizures plus (FS+)
Occipital lobe epilepsy
Frontal lobe epilepsy
Idiopathic focal epilepsy
of childhood
West syndrome
Temporal lobe epilepsy
Epilepsy with generalized
tonic-clonic seizures only
Unclassified syndrome'
Juvenile myoclonic epilepsy (JME)
No epilepsy syndrome stated
Juvenile absence epilepsy (JAE)
Other
(Benign) childhood epilepsy with
centrotemporal spikes (BECTS)
Childhood absence epilepsy (CAE)
% of children and young people diagnosed with epilepsy
Electroclinical Syndrome Classification
Cohort 1
Cohort 2

43

Certain categories are not shown in Figure 24 as there were very few children and young people
in those categories. These are: Early myoclonic encephalopathy, Lennox-Gastaut syndrome,
Dravet syndrome, Gelastic seizures due to hypothalamic hamartoma, Familial focal epilepsy with
variable foci, Migrating partial (focal)seizures of infancy, Late onset childhood occipital epilepsy
(Gastaut type), Landau-Kleffner syndrome, Progressive myoclonus (myoclonic), Autosomal
dominant nocturnal frontal lobe epilepsy (ADNFLE), Doose syndrome, Benign familial neonatal
seizures, Visual sensitive epilepsies, Childhood epilepsy with occipital paroxysms, Reflex
epilepsies, Ohtahara syndrome, (Benign) Myoclonic epilepsy in infancy, Benign infantile seizures.

Performance indicator 5: Seizure formulation

In Round 3, cohort 2, 91% (1911/2106) of children and young people diagnosed with epilepsy had
an appropriate seizure classification in the first year of care. Appropriate seizure formulation was
defined as having selected an International League Against Epilepsy (ILAE) seizure classification
(all ILAE seizure types or ‘unclassified’). There was an increase in the proportion of children and
young people diagnosed with epilepsy that had appropriate seizure classification in cohort 2
(91%) compared to cohort 1 (88%), Table 21. At a Health Board and Trust level, this indicator
ranged from 33% to 100% and had an interquartile range of 87% to 100%.
Table 21: Seizure formulation across Rounds 1, 2, 3, cohort 1 and cohort 2.

Performance indicator: 5

Audit Round

England and
Wales

England

Wales
Seizure
formulation
% of children and
young people with
epilepsy with
appropriate
seizure
classification at
first year.
Round 1
87% (1318/1516)
87% (1235/1423)
89% (83/93)
Round 2
95% (1040/1096)
95% (973/1019)
94% (67/77)
Round 3, Cohort 1
88% (979/1112)
87% (919/1051)
98% (60/61)
Round 3, Cohort 2
91% (1911/2106)
91% (1893/2086)
90% (18/20)

44

Figure 25: Seizure formulation, by Health Board and Trust, Round 3, cohort 2.
Each Health Board or Trust is represented by a vertical bar in the order of the percentage score,
including any recording 0% of children and young people with epilepsy who had an appropriate
seizure classification.

Seizure cause
In cohort 2, 4% (74/2106) of children and young people in England and Wales diagnosed with
epilepsy had a genetic seizure cause. 6% (134/2106) had a structural seizure cause. 11% (238/2106)
had seizure cause recorded as unknown (Table 22).

0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Health Board/Trust
Cohort 2 National perfomance

45

Table 22: Percentage of children and young people diagnosed with epilepsy by seizure cause
in England and Wales.
Seizure Cause
Round 3 cohort 1 (N=1112)
Round 3 cohort 2 (2106)
Genetic
31 (3%)
74 (4%)
Immune
*
*
Infectious
10 (1%)
*
Metabolic
*
10(<1%)
Not known
221 (20%)
238(11%)
Structural
84 (8%)
134(6%)
* In accordance with information governance rules, potentially sensitive data based small numbers have been masked
Of the 74 children with genetic seizure cause, 25 (34%) had chromosomal abnormality, 46 (62%)
had genetic abnormality and fewer than five had Angelman Syndrome or Rett Syndrome.
Out of the 134 children and young people diagnosed with a structural seizure cause of their
epilepsy, 29% had a vascular cause (e.g. arterial ischaemic stroke), (Figure 26). The percentage
of children with traumatic brain injury structural seizure cause is higher in cohort 2 (13%)
compared to cohort 1 (2%).

Figure 26: Percentage of children and young people diagnosed with epilepsy who had
structural seizure cause.
2%
4%
4%
7%
8%
8%
13%
25%
29%
2%
7%
5%
5%
10%
12%
2%
27%
30%
0%
5%
10%
15%
20%
25%
30%
35%
Sturge Weber
Tuberous Sclerosis
Tumour (other)
Low grade tumour
Focal cortical dysplasia
Not required
Traumatic brain injury
Malformations of
Cortical Development
Vascular
% of children and young people diagnosed with epilepsy with structural
seizure causes
Structural seizure cause
Cohort 1
Cohort 2

46

Convulsive seizures
Convulsive epileptic seizures
In cohort 2, 62% (1309/2106) of children and young people diagnosed with epilepsy had
convulsive seizures, 38% (797/2106) did not have convulsive seizures in England and Wales, Table
23.
Figure 27 shows the percentage of children and young people diagnosed with epilepsy by
convulsive seizures in England and Wales by cohort. The proportion of children and young
people diagnosed with epilepsy with convulsive seizures was slightly lower in cohort 2 (62%)
compared to cohort 1 (63%).
Table 23: Convulsive epileptic seizures in children and young people diagnosed with epilepsy
by country.
Country
% with convulsive seizures
% with no convulsive
seizures
England and Wales(N=2106)
62% (1309/2106)
38% (797/2106)
England (N=2086)
62% (1300/2086)
38% (786/2086)
Wales (N=20)
45% (9/20)
55% (11/20)

Figure 27: Percentage of children and young people diagnosed with epilepsy /with no
convulsive epileptic seizures in England and Wales by Round 3 cohort 1 and cohort 2.
63%
62%
37%
38%
0%
20%
40%
60%
80%
100%
Cohort 1
Cohort 2
% of children and young people
diagnosed with epilepsy
with convulsive seizures
with no convulsive seizures

47

Prolonged generalised convulsive seizures
In cohort 2, 16% (341/2106) of the children and young people diagnosed with epilepsy,
experienced prolonged generalised convulsive seizures in their first year of care. Prolonged
seizures are those with a duration of more than five minutes or successive seizures continuing
for more than five minutes. There was uncertainty whether the seizures were prolonged
generalised convulsive seizures or not in 4% (82/2106) of children and young people (Table 24).
Figure 28 shows the percentage of children and young people diagnosed with epilepsy by
prolonged generalised convulsive epileptic seizures in England and Wales in Round 3. The
proportion of children with generalised convulsive seizures was similar in cohorts 1 and 2.

Table 24: Prolonged generalised convulsive epileptic seizures in children and young people
diagnosed with epilepsy in cohort 2.
Country
% yes
% no
% uncertain
England and Wales (N=2106)
16% (341/2106)
80% xx-xxxx-xxxx)
4% (82/2106)

Figure 28: Percentage of children and young people diagnosed with epilepsy by prolonged
generalised convulsive epileptic seizures in England and Wales by Round 3 cohort 1 and cohort
2.

16%
16%
80%
80%
4%
4%
0%
20%
40%
60%
80%
100%
Cohort 1
Cohort 2
% of children and ypung people
diagnosed with epilepsy
yes
no
uncertain

48

Prolonged focal convulsive seizures
In cohort 2, 10% (204/2106) of the children and young people diagnosed with epilepsy,
experienced prolonged focal convulsive seizures in their first year of care. Prolonged seizures
are those with a duration of more than five minutes or successive seizures continuing for more
than five minutes. There was uncertainty whether the seizures were prolonged focal convulsive
seizures or not in 6% (127/2106) of children and young people (Table 25).
Figure 29 shows the percentage of children and young people diagnosed with epilepsy by
prolonged generalised convulsive epileptic seizures in England and Wales in Round 3. The
proportion of children with focal convulsive seizures was similar in cohorts 1 and 2.
Table 25: Prolonged focal convulsive epileptic seizures in children and young people
diagnosed with epilepsy by country in cohort 2.
Country
% yes
% no
% uncertain
England and Wales (N=2106)
10% (204/2106)
84% (1775/2106)
6% (127/2106)

Figure 29: Percentage of children and young people diagnosed with epilepsy by prolonged
focal convulsive epileptic seizures in England and Wales by Round 3 cohort 1 and cohort 2.
10%
10%
84%
84%
6%
6%
0%
20%
40%
60%
80%
100%
Cohort 1
Cohort 2
% of children and ypung people
diagnosed with epilepsy
yes
no
uncertain

49

Family history of epilepsy
In cohort 2, 25% (534/2106) of children and young people in England and Wales diagnosed with
epilepsy had a family history of epilepsy. 75% (1572/2106) did not have any family history of
epilepsy (Table 26).
Figure 30 shows the percentage of children and young people diagnosed with epilepsy by family
history of epilepsy in England and Wales in Round 3. The proportion of children and young people
diagnosed with epilepsy and with a family history of epilepsy was slightly lower in cohort 2 (25%,
534/2106) compared to cohort 1 (27%, 298/1112).
Table 26: Family history of epilepsy in children and young people diagnosed with epilepsy by
country.

Country/ network

% with family history of
epilepsy

% with no family history of
epilepsy
England and Wales (N=2106)
25% (534/2106)
75% (1572/2106)
England (N=2086)
25% (526/2086)
75% (1560/2086)
Wales (N=20)
40% (8/20)
60% (12/20)

Figure 30: Percentage of children and young people diagnosed with epilepsy with/with no
family history of epilepsy in England and Wales by Round 3 cohort 1 and cohort 2.
27%
25%
73%
75%
0%
20%
40%
60%
80%
100%
Cohort 1
Cohort 2
% of children and young people diagnosed
with epilepsy
yes
no

50

Neurodisability or neurodevelopmental problems
In Round 3 cohort 2, 22% (469/2106) of children and young people diagnosed with epilepsy had one or more neurodisability or
neurodevelopmental problem identified during their first year of care. There were 3% (66/2106) who had more than one type of
neurodisability/neurodevelopmental problem. The most common neurodisability/neurodevelopmental problems in children in cohort 2
were autistic spectrum disorder 7% (142/2106) and intellectual disability/global development delay/learning disability, 6% (131/2106) as
shown in Table 27. Figure 31 shows a breakdown of the neurodisability or neurodevelopmental problems among children diagnosed with
epilepsy in Round 3.

51

Table 27: Neurodisability/neurodevelopmental problems among children diagnosed with epilepsy in Round 3 cohort 2.
Country/
network
% Autistic
spectrum
disorder
% Cerebral
palsy
% Neuro-
degenerative
disease
% Identified
chromosomal
disorder
% Attention
deficit
hyperactivity
% Intellectual
disability
% Dyspraxia
% Dyslexia
% Speech
disorder
% Other
learning
difficulty
England and
Wales (N=2106)
7% (142/2106)
3% (59/2106)
<1% (10/2106)
2% (46/2106)
2% (36/2106)
6% (131/2106)
<1% (5/2106)
<1% (6/2106)
2% (42/2106)
3% (61/2106)
England
(N=2086)
7% (142/2086)
3% (59/2086)
<1% (10/2086)
2% (46/2086)
2% xx-xxxx-xxxx)
6% (131/2086)
<1% (5/2086)
<1% (6/2086)
2% (42/2086)
3% (61/2086)
Wales (N=20)
0% (0/20)
0% (0/20)
0% (0/20)
0% (0/20)
0% (0/20)
0% (0/20)
0% (0/20)
0% (0/20)
0% (0/20)
0% (0/20)

BRPNF (N=87)
*
*
0% (0/87)
*
0% (0/87)
*
0% (0/87)
0% (0/87)
*
*
CEWT (N=153)
8% (12/153)
*
0% (0/153)
*
*
7% (11/153)
*
0% (0/153)
*
4% (6/153)
EPEN (N=98)
*
0% (0/98)
0% (0/98)
0% (0/98)
*
9% (9/98)
0% (0/98)
0% (0/98)
*
*
EPIC (N=224)
5% (12/224)
8% (17/224)
*
3% (6/224)
4% (8/224)
6% (13/224)
*
*
3% (6/224)
4% (10/224)
NTPEN (N=191)
15% (29/191)
*
*
*
*
6% (11/191)
0% (0/191)
0% (0/191)
4% (8/191)
5% (9/191)
NWEIG (N=124)
6% (7/124)
6% (7/124)
0% (0/124)
*
*
7% (9/124)
*
*
*
*
ORENG (N=123)
4% (5/123)
*
0% (0/123)
*
0% (0/123)
4% (5/123)
0% (0/123)
0% (0/123)
*
*
PENNEC
(N=245)
6% (15/245)
2% (6/245)
*
4% (9/245)
1% (2/245)
7% (16/245)
*
0% (0/245)
*
*
SETPEG (N=90)
8% (7/90)
*
*

0% (0/90)
7% (6/90)
0% (0/90)
0% (0/90)
*
*
SWEP (N=15)
0% (0/15)
0% (0/15)
0% (0/15)
0% (0/15)
0% (0/15)
0% (0/15)
0% (0/15)
0% (0/15)
0% (0/15)
0% (0/15)
SWIPE (N=189)
5% (9/189)
3% (6/189)
*
*
3% (5/189)
11% (20/189)
*
*
3% (6/189)
3% (6/189)
SWTPEG
(N=223)
5% (12/223)
2% (5/223)
0% (0/223)
*
4% (9/223)
4% (9/223)
0% (0/223)
0% (0/223)
3% (6/223)
4% (8/223)
TEN (N=117)
10% (12/117)
*
0% (0/117)
0% (0/117)
*
*
0% (0/117)
0% (0/117)
*
*
WPNN (N=58)
9% (5/58)
*
0% (0/58)
*
*
*
0% (0/58)
0% (0/58)
0% (0/58)
*
YPEN (N=169)
5% (9/169)
*
*
5% (9/169)
*
7% (11/169)
0% (0/169)
*
*
4% (6/169)
* In accordance with information governance rules, potentially sensitive data based small numbers have been masked

52

Figure 31: Neurodisability/neurodevelopmental problems among children diagnosed
with epilepsy.
6% (131/2106) children and young people diagnosed with epilepsy in cohort 2 had
intellectual disability/global development delay/learning disability. Of these, 31% (41/131)
were severe or profound compared to 23% (16/70) in cohort 1 (Table 28).

Table 28: Percentage of severity of neurodevelopmental problems among the children
and young people with intellectual disability, global development delay, or learning
disability in England and Wales.

7%
6%
3%
3%
2%
2%
2%
<1%
<1%
<1%
6%
6%
4%
3%
2%
2%
2%
1%
1%
<1%
0%
2%
4%
6%
8%
Autistic spectrum disorder
Intellectual disability
Cerebral palsy
Other learning difficulty
Identified chromosomal disorder
Attention deficit hyperactivity disorder
Speech disorder
Dyslexia
Neurodegenerative disease
Dyspraxia
% of children and young people diagnosed with epilepsy
Neorodisability/developmental problem
Cohort 1
Cohort 2
Severity of neurodevelopmental
problems
% of children and young
people with intellectual
disability in cohort 1
% of children and young
people with intellectual
disability in cohort 2
Mild
23% (16/70)
22% (29/131)
Moderate
54% (38/70)
47% (61/131)
Severe or Profound
23% (16/70)
31% (41/131)

53

Mental health conditions
4% (84/2106) of children and young people had an identified mental health condition in
cohort 2. <1% (5/2106) of children and young people had more than one mental health
condition identified. 1% (13/2106) had a mood disorder, 1% (25/2106) had an anxiety
disorder and a further 2% (33/2106) had other mental health concerns (Table 29).
Other responses included:
•
Sleep issues, survives on very little sleep
•
Alcohol
•
Sensory processing disorder
•
Complex social background giving rise to emotional difficulties
•
Aggressive behaviour
•
Severe learning difficulties
•
Suffers with anxiety, fickle behaviours, and mood swings
•
Referred to CAMHS for behavioural concerns. No formal diagnosis
•
Auditory hallucinations
•
Disturbed, confused
•
Eating disorder
•
Anxiety or stress triggering episodes - referred to psychology for input (rejected)
•
Anxiety - referred to psychology and YPAS details given for family to self-refer
•
Possible autism, self-harm
•
PTSD or anxiety - referred to YPAS / CAMHS / psychology having FU
•
Having assessment for behavioural problems by CAMHS

5% (68/1358) of children and young people between the age of 5-15 years and diagnosed
with epilepsy in cohort 2, had an identified mental health condition(s) by their first year of
care in England and Wales.
27% (18/68) of these had formal development assessment compared to 23% (10/43) in
cohort 1. 21% (14/68) had formal cognitive assessment by their first year of care, which was
similar in cohort 1 (21%, 9/43) (Table 30).
50% (5/10) of children and young people diagnosed with emotional/behavioural problems
had Oppositional Defiant Disorder. 50% (5/10) had a Conduct Disorder.

54

Table 29: Percentage of children and young people diagnosed with mental health
conditions in England and Wales.
Mental health
condition
% of children and
young people with
mental health
conditions in cohort 2
% of children and young
people ages 5-15 with
mental health conditions
in cohort 2
% of children and young
people ages 5-15 with
mental health
conditions in cohort 1
Mood disorder
1% (13/2106)
1% (11/1358)
*
Anxiety disorder
1% (25/2106)
2% (24/1358)
1% (8/701)
Emotional/behavioural
<1% (10/2106)
1% (8/1358)
1% (10/701)
Self-harm
<1% (7/2106)
<1% (5/1358)
*
Other
2% (33/2106)
2% (22/1358)
3% (19/701)
* In accordance with information governance rules, potentially sensitive data based small numbers have
been masked

Table 30: Percentage of children and young people diagnosed with a mental health
condition that had ongoing investigations in England and Wales.
Mental health condition that
requires ongoing
investigations
% of all children and young people
with mental health conditions in
cohort 1
% of children and young people
with mental health conditions in
cohort 2

Formal developmental
assessment

23% (10/43)
27% (18/68)

Formal cognitive assessment

21% (9/43)
21% (14/68)

55

Investigations
Time since first request for EEG
•
<1% (4/2106) of the children and young people diagnosed with epilepsy did not
have an EEG.
•
1% (11/2106) had an invalid EEG request date/EEG obtained date (date of EEG
request is after the date EEG was obtained).
•
2% (34/2106) of children and young people diagnosed with epilepsy did not obtain
an EEG.
•
98% (2057/2106) of children and young people diagnosed with epilepsy obtained
an EEG and had a valid EEG request date.
NICE guidelines (Quality Statement 2) state that children and young people having initial
investigations for epilepsy undergo the tests within 4 weeks of being requested.
In Round 3, cohort 2, 53% (1117/2106) of children and young people diagnosed with
epilepsy, obtained their EEG within four weeks of request in England and Wales, (Table 31).
Figure 32 below shows a higher proportion of children and young people had to wait more
than 4 weeks for their first EEG from the time of request in cohort 2 (47%) compared to
cohort 1 (44%).
Table 31: Time in weeks to when EEG was obtained since EEG request date by country.
Country
0 - 4 weeks
4 - 8 weeks
8 - 12 weeks
12 - 16 weeks
>16 weeks
England and Wales
(N=2106)
53% (1117/2106)
30% (624/2106)
7% (152/2106)
3% (69/2106)
5% (95/2106)
England (N=2086)
53% (1108/2086)
30% (619/2086)
7% (148/2086)
3% (69/2086)
5% (94/2086)
Wales (N=20)
45% (9/20)
25% (5/20)
20% (4/20)
0% (0/20)
5% (1/20)

56

Figure 32: Time in weeks to when EEG was obtained since EEG request date in England
and Wales, Round 3, cohort 1 and cohort 2.

Table 32 shows 98% (2070/2106) of children and young people diagnosed with epilepsy
obtained the first EEG in year one. 57% (1202/2106) obtained an MRI brain, 56% (1182/2106)
obtained 12 lead ECG and 12% (248/2106) obtained a CT head scan in their first year of care
one, in England and Wales.
Figure 33 shows the percentages of children and young people who obtained each
investigation in England and Wales. These are displayed as descriptions, rather than
performance-related percentages because not all children with epilepsy require each
investigation.

56%
27%
5%
2%
4%
53%
30%
7%
3%
5%
0%
10%
20%
30%
40%
50%
60%
0 - 4 weeks
4 - 8 weeks
8 - 12 weeks
12 - 16 weeks
>16 weeks
% of children and young people diagnosed with
epilepsy
Time to when EEG was obtained since it was requested
Round 3 Cohort 1
Round 3 Cohort 2

57

Table 32: Number and percentage of children and young people diagnosed with epilepsy
that obtained First EEG, 12 lead ECG, CT head scan and MRI brain investigations by
country and OPEN UK network.
Country/ Network
% First EEG
% 12 lead ECG
% CT head scan
% MRI brain
England and Wales
(N=2106)
98% (2070/2106)
56% (1182/2106)
12% (248/2106)
57% (1202/2106)
England(N=2086)
98% (2051/2086)
56% (1172/2086)
12% (246/2086)
57% (1193/2086)
Wales (N=20)
95% (19/20)
50% (10/20)
10% (2/20)
45% (9/20)

BRPNF (N=87)
99% (86/87)
53% (46/87)
6% (5/87)
39% (34/87)
CEWT (N=153)
100% (153/153)
65% (100/153)
15% (23/153)
65% (99/153)
EPEN (N=98)
99% (97/98)
63% (62/98)
5% (5/98)
60% (59/98)
EPIC (N=224)
99% (221/224)
51% (114/224)
11% (25/224)
63% (140/224)
NTPEN (N=191)
94% (180/191)
51% (98/191)
12% (22/191)
55% (105/191)
NWEIG (N=124)
98% (122/124)
59% (73/124)
7% (9/124)
56% (70/124)
ORENG (N=123)
98% (121/123)
51% (63/123)
20% (24/123)
54% (66/123)
PENNEC (N=245)
97% (238/245)
49% (120/245)
11% (28/245)
60% (148/245)
SETPEG (N=90)
97% (87/90)
39% (35/90)
12% (11/90)
66% (59/90)
SWEP (N=15)
93% (14/15)
53% (8/15)
7% (1/15)
40% (6/15)
SWIPE (N=189)
99% (188/189)
50% (94/189)
10% (19/189)
59% (111/189)
SWTPEG (N=223)
99% (221/223)
69% (153/223)
12% (26/223)
49% (109/223)
TEN (N=117)
99% (116/117)
61% (71/117)
10% (12/117)
51% (60/117)
WPNN (N=58)
100% (58/58)
72% (42/58)
12% (7/58)
69% (40/58)
YPEN (N=169)
99% xx-xxxx-xxxx)
61% (103/169)
18% (31/169)
57% (96/169)

58

Figure 33: Percentage of children and young people diagnosed with epilepsy that
obtained First EEG, 12 lead ECG, CT head scan and MRI brain investigations in England
and Wales, Round 3, cohort 1 and cohort 2.

98%
56%
13%
59%
98%
56%
12%
57%
0%
20%
40%
60%
80%
100%
First EEG
12 lead ECG
CT head scan
MRI brain
% of children and young people diagnosed with epilepsy
Investigations
Cohort 1
Cohort 2

59

Performance Indicator 6: ECG
In Round 3 cohort 2, 65% (855/1309) of children and young people diagnosed with
epilepsy and who had convulsive seizures, obtained a 12 lead ECG by the first year in
England and Wales, (Table 33). The proportion of children and young people with
epilepsy and convulsive seizures that obtained a 12 lead ECG decreased from 68% in
cohort 1 to 65% in cohort 2. This indicator ranged from 0% to 100% and the inter-quartile
range was 50% to 81% at a Health Board and Trust level.
Table 33: Percentage of children and young people with convulsive seizures and
epilepsy, with an ECG by the first year of care.
Performance Indicator: 6
Audit Round
England and
Wales
England
Wales
ECG
% of children and young
people with convulsive
seizures and epilepsy, with
an ECG by the first year of
year
Round 3,
Cohort 1
68% (474/701)
69% (460/662)
39% (14/39)
Round 3,
Cohort 2
65% (855/1309)
65% (850/1300)
56% (5/9)

Figure 34: Percentage of children and young people with convulsive seizures and epilepsy,
with an ECG at first year of care by Health Board and Trust, Round 3, cohort 2.
Each Health Board or Trust is represented by a vertical bar in the order of the percentage
score, including those scoring 0% in this graph.
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Health Board/Trust
Cohort 2 National perfomance

60

Performance Indicator 7: MRI
NICE guidelines (Quality Statement 3) states that children and young people who meet
the criteria for neuroimaging for epilepsy to have magnetic resonance imaging (MRI).
In Round 3, cohort 2, 71% (491/687) of children and young people diagnosed with epilepsy
and with defined indications for an MRI, had an MRI by their first year of care in England
and Wales. The proportion of these children and young people who had an MRI, increased
from 69% (317/462) in cohort 1 to 71% (491/687) in cohort 2 (Table 34). This indicator ranged
from 0% to 100%, the inter-quartile range was 56% to 92% at Health Board and Trust level.

Table 34: Percentage of children and young people with defined indications for an MRI,
who had an MRI by their first year of care.
Performance Indicator: 7
Audit Round
England and
Wales
England
Wales
MRI
% of children and
young people with
defined indications for
an MRI, who had MRI
by at first year
Round 1
64% (602/948)
64% (578/899)
49% (24/49)
Round 2
72% (481/666)
73% (458/630)
64% (23/36)
Round 3 Cohort 1
69% (317/462)
70% (307/436)
38% (10/26)
Round 3 Cohort 2
71% (491/687)
72% (486/679)
63% (5/8)

Figure 35: Percentage of children and young people with defined indications for an MRI,
who had MRI by first year of care by Health Board and Trust, Round 3, cohort 2.
Each Health Board and Trust is represented by a vertical bar in the order of the percentage
score, including those scoring 0% in this graph.
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Health Board/Trust
Cohort 2 National perfomance

61

Treatment
Anti-epileptic drugs (AEDs)
Table 35 below shows the diagnosis of children and young people together with the
number of different AEDs prescribed over their first year of care. In Round 3, cohort 2, 1703
children and young people were prescribed one or more anti-epileptic drugs (AEDs) during
their first 12 months of care. 164 children and young people were prescribed three or more
AEDs during their first 12 months of care. Most (98%, 1661/1703) of the children and young
people that had anti-epileptic drugs prescribed had an epilepsy diagnosis.

Table 35: Diagnosis and AEDs.

Round 1
Round 2
Round 3, cohort 1
Round 3, cohort 2

1 or more
AEDs
N=1538
3 or more
AEDs
N=135
1 or more
AEDs
N=1059
3 or more
AEDs
N=84
1 or more
AEDs
N=190
3 or
more
AEDs
N=9
1 or more
AEDs
N=1703
3 or more
AEDs
N=164

Epilepsy

1406 (91%)
129 (96%)
976 (92%)
82 (98%)
856 (97%)
71 (99%)
1661 (98%)
163 (99%)
Single
epileptic
seizure (or
cluster)
68 (4%)
6 (4%)
9 (1%)
0 (0%)
10 (1%)
0 (0%)
16(1%)
0 (0%)
Non-
epileptic
episode (s)
44 (3%)
0 (0%)
20 (2%)
1 (1%)
7 (1%)
1 (1%)
13(1%)
0 (0%)
Uncertain
episodes
20 (1%)
0 (0%)
55 (5%)
1 (1%)
6 (1%)
0 (0%)
13(1%)
1(1%)

Figure 36 shows the frequency of AEDs use among children diagnosed with epilepsy.
Levetiracetam, sodium valproate, carbamazepine and lamotrigine were the most
prescribed AEDs for children diagnosed with epilepsy in Round 3, cohort 2. Certain
categories are not shown in Figure 36 as there were very few children and young people
in those categories. These are: Nitrazepam, Stiripentol, Eslicarbazepine, Gabapentin,
Rufinamide and ACTH.

62

Figure 36: Percentage of children and young people diagnosed with epilepsy by AED
type in England and Wales, Round 3, cohort 2.

35%
28%
16%
16%
8%
4%
3%
2%
2%
1%
1%
1%
1%
1%
<1%
<1%
30%
27%
18%
14%
7%
4%
3%
2%
2%
1%
1%
<1%
1%
<1%
<1%
<1%
0%
5%
10%
15%
20%
25%
30%
35%
40%
Levetiracetam
Sodium Valproate
Carbamazepine
Lamotrigine
Ethosuximide
Clobazam
Vigabatrin
Prednisolone
Topiramate
Phenobarbital
Other
Phenytoin
Oxcarbazepine
Lacosamide
Clonazepam
Zonisamide
% of children and young people diagnosed with epilepsy
AED type
Cohort 1
Cohort 2

63

Sodium valproate use

Figure 37 shows the number of children and young people diagnosed with epilepsy on
sodium valproate by gender, in England and Wales, in Round 3 cohort 2. There were more
boys on sodium valproate than girls across all ages.

*Age groups with fewer than five children and young people are not shown.
Figure 37: Number of children and young people diagnosed with epilepsy on sodium
valproate by gender in England and Wales, Round 3, cohort 2.

30
19
39
34
33
22
36
18
25
29
27
27
24
28
27
36
10
18
15
15
6
19
7
10
19
8
*
*
*
0
*
*
0
0
0
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
Age in years
Female
Male

64

Performance indicator 9 and 9b: Sodium Valproate
In Round 3, cohort 2, 124 females diagnosed with epilepsy were on sodium valproate
treatment, 48% (60/124) had evidence of previous discussion of risk regarding birth
defects and/or neurodevelopmental outcomes compared to 40% (25/63) in cohort 1
(Table 36). This indicator ranged from 0% to 100% and had an interquartile range of 0% to
80% at a Health Board and Trust level.
There were seven females aged nine years and above, who were diagnosed with epilepsy
and receiving treatment with sodium valproate. 71% (5/7) of them had evidence of a
previous discussion of risk regarding birth defects and/or neurodevelopmental outcomes
compared to 100% (>5) in Round 3 cohort 1 (Table 36).
Table 36: Sodium Valproate in females.
Performance indicator: Sodium valproate
Audit Round
England and Wales
9

% of all females >9 years currently on
valproate treatment with evidence of
discussion of foetal risk.
Round 3, cohort 1
100% (>5)
Round 3, cohort 2
71% (5/7)
9b

% of all females currently on valproate
treatment with evidence of discussion
of foetal risk.
Round 3, cohort 1
40% (25/63)
Round 3, cohort 2
48% (60/124)

65

Figure 38: Percentage of females currently on sodium valproate treatment with evidence
of discussion of foetal risk by Health Board and Trust, Round 3, cohort 2.
Each Health Board and Trust is represented by a vertical bar in the order of the percentage
score, including those scoring 0% in this graph.

Rescue medication prescribed
22% (458/2106) of the children and young people diagnosed with epilepsy, had rescue
medication prescribed in England and Wales in cohort 2. 78% xx-xxxx-xxxx) of children and
young people did not have rescue medication prescribed, (Figure 39).
Figure 40 shows the percentage of children and young people diagnosed with epilepsy
that had rescue medication prescribed by country and network. There were a higher
proportion of children and young people diagnosed with epilepsy that had rescue
medication prescribed in cohort 2 (22%) compared to cohort 1 (20%).
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Health Board/ Trust
Cohort 2 National perfomance

66

Figure 39: Percentage of children and young people diagnosed with epilepsy that had/did
not have rescue medication prescribed in England and Wales.

Figure 40: Percentage of children and young people diagnosed with epilepsy that had
rescue medication prescribed by country and network.
20%
22%
80%
78%
0%
20%
40%
60%
80%
100%
Cohort 1
Cohort 2
% of children and young people
diagnosed with epilepsy
rescue medication prescribed
rescue medication not prescribed
21%
14%
18%
25%
19%
7%
19%
28%
24%
10%
41%
16%
13%
24%
13%
5%
22%
22%
18%
26%
19%
33%
13%
26%
22%
23%
26%
16%
36%
11%
20%
10%
8%
23%
19%
20%
0%
10%
20%
30%
40%
50%
YPEN
WPNN
TEN
SWTPEG
SWIPE
SWEP
SETPEG
PENNEC
ORENG
NWEIG
NTPEN
EPIC
EPEN
CEWT
BRPNF
Wales
England
England and Wales
% of children and young people diagnosed that had rescue medication prescribed
Country/network
Cohort 1
Cohort 2

67

Children’s Epilepsy Surgery Service (CESS) referral criteria
Figure 41 shows, 5% (107/2106) of the children and young people diagnosed with epilepsy,
met one or more of the CESS referral criteria in England and Wales in cohort 2. 95%
(1999/2106) of children and young people did not meet any CESS referral criteria. A smaller
proportion of children and young people diagnosed with epilepsy met one or more CESS
referral criteria in cohort 2 (5%) compared to cohort 1 (8%).

Figure 41: Percentage of children and young people diagnosed with epilepsy that met/did
not meet any CESS referral criteria in England and Wales, Round 3, cohort 1 and cohort 2.

8%
5%
92%
95%
0%
20%
40%
60%
80%
100%
Cohort 1
Cohort 2
% of children and young people diagnosed
with epilepsy
met CESS referral criteria
not met any CESS referral criteria

68

Figure 42 shows the percentage of children and young people diagnosed with epilepsy
that met any CESS referral criteria by country and network.

Figure 42: Percentage of children and young people diagnosed with epilepsy that met
any CESS referral criteria by country and network.

4%
3%
1%
4%
4%
0%
6%
7%
2%
2%
4%
8%
2%
14%
7%
10%
5%
5%
7%
7%
7%
5%
6%
16%
0%
8%
3%
6%
11%
14%
8%
9%
7%
18%
7%
8%
0%
5%
10%
15%
20%
YPEN
WPNN
TEN
SWTPEG
SWIPE
SWEP
SETPEG
PENNEC
ORENG
NWEIG
NTPEN
EPIC
EPEN
CEWT
BRPNF
Wales
England
England and Wales
% of children and young people diagnosed with epilepsy that met any CESS referral
criteria
Country/network
Cohort 1
Cohort 2

69

Performance indicator 3b: Epilepsy surgery referral
In Round 3, cohort 2, a smaller proportion of children and young people diagnosed with
epilepsy that met CESS referral criteria, had an epilepsy surgery referral in cohort 2, 23%
(25/107), compared to cohort 1 30% (27/89), (Table 37). Table 38 shows the breakdown of
this performance indicator by network.
Table 37: Epilepsy surgery referral, Round 3, cohort 1 and cohort 2
Performance Indicator: 3b
Audit Round
England and
Wales
England
Wales
Epilepsy
Surgery
Referral
% of ongoing children and
young people meeting defined
epilepsy surgery referral
criteria with evidence of
epilepsy surgery referral.
Round 3, cohort 1
30% (27/89)
33% (26/78)
9% (1/11)
Round 3, cohort 2
23% (25/107)
24% (25/105)
0% (0/2)

Table 38: Percentage of ongoing children and young people meeting defined epilepsy
surgery referral criteria with evidence of epilepsy surgery referral by country and network.
Country/network
Epilepsy surgery referral in
cohort 1
Epilepsy surgery referral in
cohort 2
England and Wales
30% (27/89)
23% (25/107)
England
33% (26/78)
24% (25/105)
Wales
9% (1/11)
0% (0/2)

BRPNF
83% (5/6)
0% (0/6)
CEWT
13% (1/8)
5% (1/21)
EPEN
33% (2/6)
50% (1/2)
EPIC
25.0% (4/16)
33% (6/18)
NTPEN
36% (4/11)
57% (4/7)
NWEIG
25% (1/4)
50% (1/2)
ORENG
0% (0/3)
0% (0/2)
PENNEC
0% (0/5)
11% (2/18)
SETPEG
0% (0/0)
40% (2/5)
SWEP
13% (1/8)
0% (0/0)
SWIPE
50% (2/4)
63% (5/8)
SWTPEG
33% (1/3)
25% (2/8)
TEN
75% (3/4)
0% (0/1)
WPNN
33% (1/3)
0% (0/2)
YPEN
25% (2/8)
17% (1/6)

70

NICE guidelines (Quality Statement 7) state that children and young people who meet the
criteria for referral to a neurologist are seen within 4 weeks of referral.
4% (9/243) of children and young people that met the defined criteria for a paediatric
neurology referral, did not have a paediatric neurologist input date.
62% (151/243) of children and young people who met the criteria for referral to a
neurologist, were seen within four weeks of referral in England and Wales, (Table 39). A
higher proportion of children and young people who met the criteria for referral to a
neurologist, were seen within four weeks of referral in cohort 2 (62%) compared to cohort
1 (53%) as shown in Figure 43.
Table 39: Time in weeks since referral to neurologist by country.
Country
0 - 4 weeks
4 - 8 weeks
8 - 12 weeks
12 - 16 weeks
>16 weeks
England and Wales
62% (151/243)
11% (26/243)
10% (23/243)
4% (10/243)
10% (24/243)
England
63% (151/242)
11% (26/242)
10% (23/242)
4% (10/242)
10% (24/242)
Wales
100% (1/1)
0% (0/1)
0% (0/1)
0% (0/1)
0% (0/1)
Only the children with a paediatric neurologist input dates were included in this analysis, hence the
percentages on the table may not add up to 100%.

Figure 43: Time in weeks from referral to neurologist input in England and Wales.
53%
15%
13%
7%
12%
62%
11%
10%
4%
10%
0%
10%
20%
30%
40%
50%
60%
70%
0 - 4 weeks
4 - 8 weeks
8 - 12 weeks
12 - 16 weeks
>16 weeks
% of children and young people
meeting the defined criteria for
paediatric neurology referral
Time in weeks from when neurologist input was achieved from request
Round 3 Cohort 1
Round 3 Cohort 2

71

Care planning
Appropriate care planning
Performance indicator 10: Comprehensive Care Planning agreement
In Round 3, cohort 2, 65% (1379/2106) of children and young people diagnosed with
epilepsy had evidence of a comprehensive care plan that had been updated and was
agreed between the patient, their family and their healthcare providers (Table 40). There
was an increase in the proportion of children and young people diagnosed with epilepsy
and with a comprehensive care plan in cohort 2 (66%, 1379/2106) compared to cohort 1
(62%, 694/1112). This indicator ranged from 0% to 100% and had an interquartile range of
46% to 90% at a Health Board or Trust level.
Table 40: Comprehensive Care Planning agreement, Round 3, cohort 1 and cohort 2.
Performance indicator: Comprehensive
Care Planning agreement
Audit Round
England and
Wales
England
Wales
10
% of children and young people
with epilepsy after 12 months
where there is evidence of a
comprehensive care plan that is
agreed between the person,
their family and/or carers and
primary and secondary care
providers, and the care plan has
been updated where necessary.
Round 3,
cohort 1
62% (694/1112)
64% (667/1051)
44% (27/61)
Round 3,
cohort 2
65% (1379/2106)
65% (1364/2086)
75% (15/20)
10a
% of children and young people
with epilepsy after 12 months
that had an individualised
epilepsy document, with
individualised epilepsy
document, or a copy clinic
letter that includes care
planning information.
Round 3,
cohort 1
88% (982/1112)
89% (933/1051)
80% (49/61)
Round 3,
Cohort 2
91% (1907/2106)
91% (1889/2086)
90% (18/20)
10b
% of children and young people
with epilepsy after 12 months
where there was evidence of an
agreement between the
person, their family and/or
carers as appropriate.
Round 3,
cohort 1
74% (825/1112)
75% (786/1051)
64% (39/61)
Round 3,
cohort 2
76% (1606/2106)
76% (1589/2086)
85% (17/20)
10c
% of children and young people
with epilepsy after 12 months
where there is evidence that
the care plan has been updated
where necessary.
Round 3,
cohort 1
70% (774/1112)
71% (746/1051)
46% (28/61)
Round 3,
cohort 2
72% (1505/2106)
71% (1489/2086)
80% (16/20)

72

Figure 44: Comprehensive Care Planning agreement, Round 3 cohort 2.
Each Health Board and Trust is represented by a vertical bar in the order of the percentage
score, including those scoring 0% in this graph.

0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Health Board/ Trust
Cohort 2 National perfomance

73

Performance indicator 11: Comprehensive Care Planning
content
NICE guidelines (Quality Statement 4) state that children and young people with epilepsy
have an agreed and comprehensive care plan.
In Round 3, cohort 2, 70% (1465/2106) of children and young people diagnosed with
epilepsy had documented evidence of communication regarding relevant core elements
of care planning, (Table 41). This proportion was static compared to Round 3 Cohort 1. This
indicator ranged from 0% to 100% and had an interquartile range of 48% to 94% at a Health
Board and Trust level.
NICE guidelines (Quality Statement 6) state that children and young people with a history
of prolonged or repeated seizures have an agreed written emergency care plan.
90% (412/458) of children and young people diagnosed with epilepsy and on rescue
medication, had a parental prolonged seizure care plan in England and Wales in cohort 2
compared to 89% (193/218) in cohort 1, (Table 41).
Table 41: Comprehensive Care Planning content, Round 3, cohort 1 and cohort 2.
Performance indicator: Comprehensive
Care Planning agreement

Audit Round
England and
Wales
England
Wales
11
% of children diagnosed with
epilepsy with documented evidence
of communication regarding core
elements of care planning.
Round 3, cohort 1
70% (779/1112)
72% (754/1051
41% (25/61)
Round 3, cohort 2
70% (1465/2106)
70% (1450/2086)
75% (15/20)
11a
% of children diagnosed with
epilepsy with parental prolonged
seizures care plan.
Round 3, cohort 1
89% (193/218)
89% (182/204)
79% (11/14)
Round 3, cohort 2
90% (412/458)
90% (412/457)
0% (0/1)
11b
% of children diagnosed with
epilepsy with evidence of discussion
regarding water safety.
Round 3, cohort 1
80% (886/1112)
81% (856/1051)
49% (30/61)
Round 3, cohort 2
80% xx-xxxx-xxxx)
80% (1665/2086)
80% (16/20)
11c
% of children diagnosed with
epilepsy with evidence of discussion
regarding first aid.
Round 3, cohort 1
85% (943/1112)
86% (906/1051)
61% (37/61)
Round 3, cohort 2
85% (1796/2106)
85% (1778/2086)
90% (18/20)
11d
% of children diagnosed with
epilepsy with evidence of discussion
regarding general participation and
risk.
Round 3, cohort 1
80% (890/1112)
81% (852/1051)
62% (38/61)
Round 3, cohort 2
81% xx-xxxx-xxxx)
81% xx-xxxx-xxxx)
85% (17/20)
11e
% of children diagnosed with
epilepsy evidence of discussion of
been given service contact details.
Round 3, cohort 1
91% (1009/1112)
91% (960/1051)
80% (49/61)
Round 3, cohort 2
92% (1927/2106)
92% (1908/2086)
95% (19/20)

74

Figure 45: Comprehensive Care Planning content by Health Board and Trust, Round 3
cohort 2.
Each Health Board and Trust is represented by a vertical bar in the order of the percentage
score, including those scoring 0% in this graph.
Performance indicator 12: School Individual Healthcare Plan
In Round 3 cohort 2, 32% (455/1402) of children and young people diagnosed with epilepsy
and aged five years and above, had evidence of a school individual healthcare plan by their
first year of care, (Table 42). This proportion was static compared to Round 3, cohort 1. This
indicator ranged from 0% to 100% and had an interquartile range of 5% to 58% at Health
Board and Trust level.
Table 42: School Individual Healthcare Plan, Round 3, cohort 1 and cohort 2.
Performance indicator 12:
Audit Round
England and
Wales
England
Wales
School
Individual
Healthcare
Plan
% 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.
Round 3,
cohort 1
32% (231/717)
32% (219/676)
29% (12/41)
Round 3,
cohort 2
32% (455/1402)
32% (447/1391)
73% (8/11)

0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Health Board/ Trust
Cohort 2 National perfomance

75

Figure 46: School Individual Healthcare Plan, by Health Board or Trust, Round 3, cohort 2.
Each Health Board and Trust is represented by a vertical bar in the order of the
percentage score, including those scoring 0% in this graph.

Sudden Unexpected Death in Epilepsy (SUDEP)
43% (915/2106) of children and young people diagnosed with epilepsy, had evidence of
information on SUDEP in England and Wales in cohort 2. 57% (1191/2106) of children and
young people did not have SUDEP information provided. Figure 47 shows the proportion
of children with SUDEP information was equal in the two cohorts. Figure 48 shows the
percentage of children and young people with evidence of SUDEP information by
country and network in Round 3.

0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Health Board/ Trust
Cohort 2 National perfomance

76

Figure 47: Percentage of children and young people diagnosed with Epilepsy
with/without evidence of SUDEP information in England and Wales.

Figure 48: Percentage of children and young people diagnosed with evidence of SUDEP
information by country and network.
43%
43%
57%
57%
0%
20%
40%
60%
80%
100%
Cohort 1
Cohort 2
% of children and young people diagnosed
with epilepsy
with SUDEP information
without SUDEP information
82%
59%
64%
52%
41%
0%
31%
29%
45%
56%
35%
24%
22%
30%
68%
0%
44%
43%
80%
60%
50%
55%
44%
10%
39%
31%
44%
58%
41%
26%
28%
20%
47%
10%
45%
43%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
YPEN
WPNN
TEN
SWTPEG
SWIPE
SWEP
SETPEG
PENNEC
ORENG
NWEIG
NTPEN
EPIC
EPEN
CEWT
BRPNF
Wales
England
England and Wales
% of children and young people diagnosed with epilepsy with SUDEP
information
Country/network
Cohort 1
Cohort 2

77

Professionals and services involved in care
Professionals
Table 43 shows that 83% (1757/2106) of the children and young people diagnosed with
epilepsy had input from a paediatrician with expertise in epilepsies in England and Wales.
21% (447/2106) of children and young people diagnosed with epilepsy had input from a
paediatric neurologist. 78% xx-xxxx-xxxx) of children and young people diagnosed with
epilepsy had an input from an epilepsy specialist nurse (ESN).
Figure 49 shows the percentage of children and young people diagnosed with epilepsy
with an input from various professionals in England and Wales. There was an increase in
the proportion of children and young people diagnosed with epilepsy and had input from
an epilepsy specialist nurse (ESN) in cohort 2 (78%) compared to cohort 1 (72%).
Table 43: Percentage of children and young people diagnosed with epilepsy with an input
from various professionals by Country.
Professionals and services
involved in care
England and Wales
England
Wales
Consultant Paediatrician with
expertise in epilepsies
83% (1757/2106)
83% (1739/2086)
90% (18/20)
ESN
78% xx-xxxx-xxxx)
78% (1625/2086)
95% (19/20)
Paediatric neurologist
21% (447/2106)
21% (445/2086)
10% (2/20)
CESS
1% (17/2106)
1% (17/2086)
0% (0/20)
Ketogenic dietician
1% (19/2106)
1% (19/2086)
0% (0/20)
VNS service
0% (0/2106)
0% (0/2086)
0% (0/20)
Genetic service
5% (114/2106)
5% (114/2086)
0% (0/20)
Clinical psychologist
2% (41/2106)
2% (41/2086)
0% (0/20)
Educational psychologist
1% (15/2106)
1% (14/2086)
5% (1/20)
Psychiatrist
<1% (7/2106)
<1% (7/2086)
0% (0/20)
Neuropsychologist
1% (12/2106)
1% (12/2086)
0% (0/20)
Counselling service
<1% (6/2106)
<1% (6/2086)
0% (0/20)
Other mental health
professional
1% (22/2106)
1% (22/2086)
0% (0/20)
Youth worker
<1% (4/2106)
<1% (4/2086)
0% (0/20)
Other
2% (35/2106)
2% xx-xxxx-xxxx)
0% (0/20)

78

Figure 49: Percentage of children and young people diagnosed with epilepsy with input
from various professionals in England and Wales.

0%
<1%
<1%
<1%
1%
1%
1%
1%
1%
2%
2%
5%
21%
78%
83%
0%
1%
<1%
<1%
2%
1%
1%
1%
1%
1%
2%
5%
22%
72%
82%
0%
20%
40%
60%
80%
100%
% VNS service
% Psychiatrist
% Counselling service
% Youth worker
% CESS
% Ketogenic dietician
% Educational psychologist
% Neuropyschologist
% Other mental health
professional
% Clinical psychologist
% Other
% Genetic service
% Paediatric neurologist
% ESN
% Consultant Paediatrician
with expertise in epilepsies
% children and young people diagnosed with epilepsy
Professionals and services involved in care
Cohort 1
Cohort 2

79

Performance indicator 1: Paediatrician with expertise in
epilepsies
In Round 3 cohort 2, 87% (1830/2106) of children and young people diagnosed with
epilepsy, had input from a paediatrician with expertise in epilepsies in their first year of
care, (Table 44). This proportion is slightly lower in cohort 2 compared to cohort 1, 88%
(977/1112). This indicator ranged from 0% to 100% and had an interquartile range of 88% to
100% at a Health Board and Trust level.
Table 44: Paediatrician with expertise in epilepsies across Rounds 1, 2, 3, cohort 1 and
cohort 2.
Performance indicator: 1
Audit Round
England and
Wales
England
Wales
Paediatrician
with
expertise in
epilepsies

% of children and
young people with
epilepsy, with input
by a ‘consultant
paediatrician with
expertise in
epilepsies’ within
the first year of care.
Round 1
78% (1183/1516)
78% (1106/1423)
83% (77/93)
Round 2
86% (938/1090)
86% (877/1019)
64% (61/71)
Round 3
cohort 1
88% (977/1112)
88% (924/1051)
87% (53/61)
Round 3
cohort 2
87% (1830/2106)
87% (1813/2086)
85% (17/20)

Figure 50: Paediatrician with expertise in epilepsies by Health Board and Trust, Round 3,
cohort 2.
Each Health Board and Trust is represented by a vertical bar in the order of the percentage
score, including those scoring 0% in this graph.
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Health Board/Trust
Cohort 2 National perfomance

80

Performance indicator 2: Epilepsy specialist nurse
NICE guidelines (Quality Statement 5) state that children and young people with epilepsy
are seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
In Round 3, cohort 2, 73% (1543/2106) of children and young people diagnosed with
epilepsy, had input from an epilepsy specialist nurse (ESN) by their first year of care, (Table
45). This proportion is higher than Round 3 cohort 1, 69% (767/1112). This indicator ranged
from 0% to 100% and had an interquartile range of 58 % to 94%.
Table 45: Epilepsy specialist nurse across Rounds 1, 2, 3, cohort 1 and cohort 2.
Performance indicator: 2
Audit Round
England and
Wales
England
Wales
Epilepsy
specialist
nurse

% of children
and young
people with
epilepsy,
with input by
epilepsy
specialist
nurse within
the first year
of care.
Round 1
43% (658/1516)
42% (592/1423)
71% (66/93)
Round 2
56% (605/1090)
54% (555/1019)
70% (50/71)
Round 3 Cohort 1
69% (767/1112)
70% (738/1051)
48% (29/61)
Round 3 Cohort 2
73% (1543/2106)
73% (1525/2086)
90% (18/20)

Figure 51: Input from an ESN by Health Board and Trust, Round 3, cohort 2.
Each Health Board or Trust is represented by a vertical bar in the order of the percentage
score, including those scoring 0% in this graph.
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Health Board/Trust
Cohort 2 National perfomance

81

Performance indicator 3: Tertiary input
In Round 3 cohort 2, 52% (243/464) of children and young people who met paediatric
neurology referral criteria had paediatric neurologist input or Children’s Epilepsy Surgical
service (CESS) referral by their first year of care, (Table 46). There was a decline in the
proportion of children and young people that met paediatric neurology referral criteria and
had paediatric neurologist input or Children’s Epilepsy Surgical service (CESS) referral in
cohort 2 compared to cohort 1, 59% (150/253). This indicator ranged from 0% to 100% and
had an interquartile range of 29% to 73% at Health Board or Trust level.
Table 46: Tertiary input across Rounds 1, 2, 3, cohort 1 and cohort 2.
Performance indicator: 3
Audit Round
England and
Wales
England
Wales

Tertiary
input

% of children and young
people meeting defined
criteria for paediatric
neurology referral, with
input of tertiary care and/or
CESS referral within the first
year of care
Round 1
59% (205/347)
59% (200/338)
56% (5/9)
Round 2
54% (119/220)
54% (115/214)
67% (4/6)
Round 3
cohort 1
59% (150/253)
59% (142/240)
62% (8/13)
Round 3
cohort 2
52% (243/464)
53% (242/458)
17% (1/6)

Figure 52: Tertiary input by Health Board and Trust, Round 3, cohort 2.
Each Health Board and Trust is represented by a vertical bar in the order of the
percentage score, including those scoring 0% in this graph.
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Health Board/Trust
Cohort 2 National perfomance

82

Ongoing investigations
Table 47 shows the children and young people who were diagnosed with epilepsy in
England and Wales that had relevant ongoing investigations in the first year of care.
23% (477/2106) had a formal development assessment compared to 20% in cohort 1. 10%
(213/2106) had formal cognitive assessment compared to 7% in cohort 1 (Figure 53).

Figure 53 shows the percentage of children and young people that had relevant ongoing
assessment in England and Wales.
Table 47: Number of children and young people diagnosed with epilepsy with relevant
ongoing investigation by country.
Country
% with formal developmental
assessment
% with formal cognitive
assessment
England and Wales (N=2106)
23% (477/2106)
10% (213/2106)
England (N=2086)
23% (476/2086)
10% (213/2086)
Wales (N=20)
5% (1/20)
0% (0/20)

Figure 53: Percentage of children and young people diagnosed with epilepsy with
relevant ongoing investigation in England and Wales.
7%
20%
10%
23%
0%
5%
10%
15%
20%
25%
30%
formal cognitive assessment
formal developmental assessment
% of children and young people
diagnosed with epilepsy
Cohort 1
Cohort 2

83

Performance indicator 8: Accuracy of diagnosis
In Round 3, cohort 2, 98% (2081/2126) of children and young people had the same
diagnosis by their first year of care, (Table 48). This proportion has been increasing in every
audit round. This indicator ranged from 50% to 100% and had an interquartile range of 98%
to 100% at a Health Board and Trust level.
Table 48: Accuracy of diagnosis across Rounds 1, 2, 3, cohort 1 and cohort 2.
Performance indicator: 8
Audit Round
England and
Wales
England
Wales
Accuracy
of
diagnosis

% of
children
diagnosed
with
epilepsy,
who still
had that
diagnosis at
1 year.
Round 1
88% (1516/1721)
88% (1423/1624)
96% (93/97)
Round 2
93% (1077/1156)
93% (1007/1080)
92% (70/76)
Round 3 cohort 1
97% (1093/1124)
97% (1032/1063)
100% (61/61)
Round 3 cohort 2
98% (2081/2126)
98% (2061/2104)
91% (20/22)

Figure 54: Accuracy of diagnosis by Health Board and Trust, Round 3, cohort 2.
Each Health Board and Trust is represented by a vertical bar in the order of the percentage
score, including those scoring 0% in this graph.
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%

84

Overview of performance indicators
Table 1: Performance indicators by country across Rounds 1, 2, 3, cohort 1 and cohort 2.
Performance
Indicators

Audit Round

England and Wales
England
Wales
1
Paediatrician
with expertise
in epilepsies
Round 1
78% (1183/1516)
78% (1106/1423)
83% (77/93)
Round 2
86% (938/1090)
86% (877/1019)
64% (61/71)
Round 3, cohort 1
88% (977/1112)
88% (924/1051)
87% (53/61)
Round 3, cohort 2
87% (1830/2106)
87% (1813/2086)
85% (17/20)
2
Epilepsy
Specialist
Nurse
Round 1
43% (658/1516)
42% (592/1423)
71% (66/93)
Round 2
56% (605/1090)
54% (555/1019)
70% (50/71)
Round 3, cohort 1
69% (767/1112)
70% (738/1051)
48% (29/61)
Round 3, cohort 2
73% (1543/2106)
73% (1525/2086)
90% (18/20)
3 Tertiary input
Round 1
59% (205/347)
59% (200/338)
56% (5/9)
Round 2
54% (119/220)
54% (115/214)
67% (4/6)
Round 3, cohort 1
59% (150/253)
59% (142/240)
62% (8/13)
Round 3, cohort 2
52% (243/464)
53% (242/458)
17% (1/6)
5 Seizure
formulation
Round 1
87% (1318/1516)
87% (1235/1423)
89% (83/93)
Round 2
95% (1040/1096)
95% (973/1019)
94% (67/77)
Round 3, cohort 1
88% (979/1112)
87% (919/1051)
98% (60/61)
Round 3, cohort 2
91% (1911/2106)
91% (1893/2086)
90% (18/20)
7 MRI
Round 1
64% (602/948)
64% (578/899)
49% (24/49)
Round 2
72% (481/666)
73% (458/630)
64% (23/36)
Round 3, cohort 1
69% (317/462)
70% (307/436)
38% (10/26)
Round 3, cohort 2
71% (491/687)
72% (486/679)
63% (5/8)
8 Accuracy of
diagnosis
Round 1
88% (1516/1721)
88% (1423/1624)
96% (93/97)
Round 2
93% (1077/1156)
93% (1007/1080)
92% (70/76)
Round 3, cohort 1
97% (1093/1124)
97% (1032/1063)
100% (61/61)
Round 3, cohort 2
98% (2081/2126)
98% (2061/2104)
91% (20/22)

85

Figure 1: Performance indicators in England and Wales across Rounds 1, 2, 3, cohort 1 and
cohort 2.
Figure 2: Epilepsy12 Performance indicators for England and Wales, across Rounds 1, 2, 3,
cohort 1 and cohort 2.
The ‘whiskers’ on the chart above represent 95% confidence intervals. If these whiskers overlap, the
difference in the achievement of the indicator is not statistically significant.
0%
20%
40%
60%
80%
100%
Round 1
Round 2
Round 3, cohort
1
Round 3, cohort
2
Audit Round
Paediatrician with
expertise in
epilepsies
Epilepsy Specialist
Nurse
Tertiary input
Seizure formulation
MRI
Accuracy of
diagnosis
98%
71%
91%
52%
73%
87%
97%
69%
88%
59%
69%
88%
93%
72%
95%
54%
56%
86%
88%
64%
87%
59%
43%
78%
0%
50%
100%
8: Accuracy of diagnosis
7: MRI
5: Seizure classification
3: Tertiary input
2: Epilepsy specialist nurse
1: Paediatrician with expertise in
epilepsies
Round 1
Round 2
Round 3 cohort 1
Round 3 cohort 2

86

Figure 3: Epilepsy12 Performance indicators for England, across Rounds 1, 2, 3, cohort 1
and cohort 2.
The ‘whiskers’ on the chart above represent 95% confidence intervals. If these whiskers overlap the
difference in the achievement of the indicator is not statistically significant.
Figure 4: Epilepsy12 Performance indicators for Wales, across Rounds 1, 2, 3, cohort 1 and
cohort 2.
The ‘whiskers’ on the chart above represent 95% confidence intervals. If these whiskers overlap, the
difference in the achievement of the indicator is not statistically significant.
91%
63%
90%
17%
90%
85%
100%
38%
98%
62%
48%
87%
92%
64%
94%
67%
70%
86%
96%
49%
89%
56%
71%
83%
0%
50%
100%
8: Accuracy of diagnosis
7: MRI
5: Seizure classification
3: Tertiary input
2: Epilepsy specialist nurse
1: Paediatrician with expertise in
epilepsies
Round 1
Round 2
Round 3 cohort 1
Round 3 cohort 2
98%
72%
91%
53%
73%
87%
97%
70%
87%
59%
70%
88%
93%
73%
95%
54%
54%
86%
88%
64%
87%
59%
42%
78%
0%
50%
100%
8: Accuracy of diagnosis
7: MRI
5: Seizure classification
3: Tertiary input
2: Epilepsy specialist nurse
1: Paediatrician with expertise in
epilepsies
Round 1
Round 2
Round 3 cohort 1
Round 3 cohort 2

87

Figure 5: Epilepsy12 Performance indicators in England and Wales in Round 3 cohort 2
and Cohort 1.
The ‘whiskers’ on the chart above represent 95% confidence intervals. If these whiskers overlap the
difference in the achievement of the indicator is not statistically significant.

32%
70%
65%
48%
71%
98%
71%
65%
91%
61%
23%
52%
73%
87%
32%
70%
62%
40%
100%
97%
69%
68%
88%
62%
30%
59%
69%
88%
0%
20%
40%
60%
80%
100%
12. School Individual Healthcare Plan:
11. Comprehensive Care Planning content:
10. Comprehensive Care Planning agreement:
9b. Sodium Valproate all females:
9a. Sodium Valproate females
9 years old and greater:
8. Accuracy of diagnosis:
7. MRI:
6. ECG:
5. Seizure Formulation:
4. Appropriate first paediatric assessment:
3b. Epilepsy Surgery referral:
3. Tertiary involvement:
2. Epilepsy nurse specialist:
1. Paediatrician with expertise:
E12 performance indicators by Cohort
Round 3 Cohort 1
Round 3 Cohort 2

88

Figure 6: Epilepsy12 Performance indicators by country, Round 3 cohort 2.
The ‘whiskers’ on the chart above represent 95% confidence intervals. If these whiskers overlap the
difference in the achievement of the indicator is not statistically significant.
73%
75%
75%
0%
N/A
91%
63%
56%
90%
85%
0%
17%
90%
85%
32%
70%
65%
50%
71%
98%
72%
65%
91%
61%
24%
53%
73%
87%
0%
20%
40%
60%
80%
100%
12. School Individual Healthcare Plan:
11. Comprehensive Care Planning content:
10. Comprehensive Care Planning
agreement:
9b. Sodium Valproate all females:
9a. Sodium Valproate females
9 years old and greater:
8. Accuracy of diagnosis:
7. MRI:
6. ECG:
5. Seizure Formulation:
4. Appropriate first paediatric assessment:
3b. Epilepsy Surgery referral:
3. Tertiary involvement:
2. Epilepsy nurse specialist:
1. Paediatrician with expertise:
Epilepsy12 Performance indicators by country
England
Wales

89

Figure 7: Epilepsy12 Performance indicators in England and Wales, Round 3, cohort 2
only

32%
70%
65%
48%
71%
98%
71%
65%
91%
61%
23%
52%
73%
87%
0%
20%
40%
60%
80%
100%
12. School Individual Healthcare Plan:
11. Comprehensive Care Planning content:
10. Comprehensive Care Planning agreement:
9b. Sodium Valproate all females:
9a. Sodium Valproate females 9 years old and
greater:
8. Accuracy of diagnosis:
7. MRI:
6. ECG:
5. Seizure Formulation:
4. Appropriate first paediatric assessment:
3b. Epilepsy Surgery referral:
3a. Tertiary involvement:
2. Epilepsy nurse specialist:
1. Paediatrician with expertise:
England and Wales
Epilepsy12 Performance indicators in England and Wales, Round 3 cohort 2

90

List of clinical data figures & tables
Tables
Table 1: Participation in Round 3 of Epilepsy12. – page 5
Table 2: Shows the flow of children and young people through the data capture system. –
page 6
Table 3: Number of children and young people registered as eligible for the audit. – page
8
Table 4: Number of children and young people in cohort 2 by country, network and age-
group. – page 14
Table 5: Demographic characteristics of children included in Round 1, 2 and 3 of
Epilepsy12. – page 15
Table 6: Percentage and number of children and young people in cohort 2 by deprivation
by country and network. – page 17
Table 7: Prior experience of seizures in children and young people in cohort 2 in England
and Wales. – page 20
Table 8: Diagnostic status at first year of care by country and network. – page 21
Table 9: Diagnostic status at first paediatric assessment by country and network. – page
23
Table 10: Description of non-epileptic episodes in children in cohort 2 at one year after
first assessment in England and Wales. – page 26
Table 11: Referring service to first paediatric assessment by country. – page 27
Table 12a: Time in weeks to achieving input from paediatrician with expertise in epilepsy
since the first referral to paediatrics by country. – page 28
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. –
page 29
Table 13: Setting of the first paediatric assessment by country. – page 32
Table 14: Appropriate first paediatric assessment. – page 33
Table 15: Number of seizures in children diagnosed with epilepsy, Round 3, cohort 1 and
cohort 2. – page 35
Table 16: Seizure type, Round 3, cohort 1 and cohort 2. – page 35
Table 17: Epileptic seizure type, Round 3, cohort 1 and cohort 2. - page 36
Table 18: Percentage of children and young people diagnosed with epilepsy who had
focal onset seizures in England and Wales. – page 37

91

Table 19: Percentage of children and young people diagnosed with epilepsy who had
generalised onset seizures in England and Wales. – page 39
Table 20: Percentage of children and young people diagnosed with epilepsy who had
unknown onset seizures in England and Wales. – page 41
Table 21: Seizure formulation across Rounds 1, 2, 3, cohort 1 and cohort 2. – page 43
Table 22: Percentage of children and young people diagnosed with epilepsy by seizure
cause in England and Wales. – page 45
Table 23: Convulsive epileptic seizures in children and young people diagnosed with
epilepsy by country. – page 46
Table 24: Prolonged generalised convulsive epileptic seizures in children and young
people diagnosed with epilepsy in cohort 2. – page 47
Table 25: Prolonged focal convulsive epileptic seizures in children and young people
diagnosed with epilepsy by country in cohort 2. – page 48
Table 26: Family history of epilepsy in children and young people diagnosed with
epilepsy by country. – page 49
Table 27: Neurodisability/neurodevelopmental problems among children diagnosed with
epilepsy in Round 3 cohort 2. – page 51
Table 28: Percentage of severity of neurodevelopmental problems among the children
and young people with intellectual disability, global development delay, or learning
disability in England and Wales. – page 52
Table 29: Percentage of children and young people diagnosed with mental health
conditions in England and Wales. – page 54
Table 30: Percentage of children and young people diagnosed with a mental health
condition that had ongoing investigations in England and Wales. – page 54
Table 31: Time in weeks to when EEG was obtained since EEG request date by country. –
page 55
Table 32: Number and percentage of children and young people diagnosed with epilepsy
that obtained First EEG, 12 lead ECG, CT head scan and MRI brain investigations by
country and OPEN UK network. – page 57
Table 33: Percentage of children and young people with convulsive seizures and
epilepsy, with an ECG by the first year of care. – page 59
Table 34: Percentage of children and young people with defined indications for an MRI,
who had an MRI by their first year of care. – page 60
Table 35: Diagnosis and AEDs. – page 61
Table 36: Sodium Valproate in females. – page 64
Table 37: Epilepsy surgery referral, Round 3, cohort 1 and cohort 2. – page 69

92

Table 38: Percentage of ongoing children and young people meeting defined epilepsy
surgery referral criteria with evidence of epilepsy surgery referral by country and
network. – page 69
Table 39: Time in weeks since referral to neurologist by country. – page 70
Table 40: Comprehensive Care Planning agreement, Round 3, cohort 1 and cohort 2. –
page 71
Table 41: Comprehensive Care Planning content, Round 3, cohort 1 and cohort 2. – page
73
Table 42: School Individual Healthcare Plan, Round 3, cohort 1 and cohort 2. – page 74
Table 43: Percentage of children and young people diagnosed with epilepsy with an
input from various professionals by Country. – page 77
Table 44: Paediatrician with expertise in epilepsies across Rounds 1, 2, 3, cohort 1 and
cohort 2. – page 79
Table 45: Epilepsy specialist nurse across Rounds 1, 2, 3, cohort 1 and cohort 2. – page 80
Table 46: Tertiary input across Rounds 1, 2, 3, cohort 1 and cohort 2. – page 81
Table 47: Number of children and young people diagnosed with epilepsy with relevant
ongoing investigation by country. – page 82
Table 48: Number of children and young people diagnosed with epilepsy with relevant
ongoing investigation by country. – page 83

Overview of performance indicators
Table 1: Performance indicators by country across Rounds 1, 2, 3, cohort 1 and cohort 2. –
page 84
Figures
Figure 3: Percentage of children and young people registered in Round 3 by EEG and
Health Boards and Trusts by download date. – page 7
Figure 4: Percentage of data completeness by country in Round 2, Round 3 cohort 1 and
Round 3 cohort 3. – page 9
Figure 3: Percentage of children and young people verified by Health Boards and Trusts
in Round 3. – page 10
Figure 4: The percentage of children and young people within cohort 2 with their first
year of care form submitted and locked. – page 11

93

Figure 5: Numbers of children and young people included in cohort 2 by age in years at
first paediatric assessment and gender. – page 12
Figure 6: Numbers of children and young people included in cohort 2 by age in months at
first paediatric assessment and gender. – page 13
Figure 7: Comparison of the proportion of children and young people by age group in
Round 1, Round 2, Round 3 cohort 1 and cohort 2. – page 16
Figure 8: Percentage of children and young people in the cohorts by deprivation quintile
in England and Wales combined. – page 18
Figure 9: Percentage of children and young people in cohort 2 by deprivation by
country/network. – page 19
Figure 10: Percentage of children and young people with/without prior experience of
seizures. – page 20
Figure 11: Percentage of children and young people in Cohort 2 by diagnostic status at
first year of care, in England and Wales. – page 22
Figure 12: Percentage of children and young people by diagnostic status in first
paediatric assessment and first year of care in England and Wales, in Round 3 cohort 2. –
page 24
Figure 13: Diagnosis at first assessment and one year after first assessment in Round 1,
Round 2, Round 3 cohort 1 and cohort 2. – page 25
Figure 14: Percentage of children and young people by description of non-epileptic
episode. – page 26
Figure 15: Referring service to first paediatric assessment in England and Wales. – page
27
Figure 16a: Time since first referral to first paediatric assessment in England and Wales. –
page 29

Figure 16b: Time since first referral to first paediatric assessment by deprivation quintile
in England and Wales. – page 30
Figure 17: Numbers of children and young people diagnosed with epilepsy by age in
years at first paediatric assessment and gender in England and Wales. – page 31
Figure 18: Setting of first paediatric assessment in Round 1, Round 2 and Round 3 cohort 1
and cohort 2 in England and Wales. – page 32
Figure 19: Appropriate first paediatric assessment by unit, Round 3, cohort 2. – page 34
Figure 20: Percentage of children diagnosed with epilepsy by epileptic seizure type in
England and Wales. – page 36
Figure 21: Percentage of children and young people diagnosed with epilepsy who had
focal onset seizures in England and Wales, Round 3, cohort 1 and cohort 2. – page 38

94

Figure 22: Percentage of children and young people diagnosed with epilepsy who had
generalised onset seizures in England and Wales, Round 3, cohort 1 and cohort 2. – page
40
Figure 23: Percentage of children and young people diagnosed with epilepsy that had
unknown onset seizures in England and Wales. – page 41
Figure 24: Percentage of children and young people diagnosed with epilepsy by
electroclinical syndrome in England and Wales, Round 3, cohort 1 and cohort 2. – page 42
Figure 25: Seizure formulation, by Health Board and Trust, Round 3, cohort 2. – page 44
Figure 26: Percentage of children and young people diagnosed with epilepsy who had
structural seizure cause. – page 45
Figure 27: Percentage of children and young people diagnosed with epilepsy /with no
convulsive epileptic seizures in England and Wales by Round 3 cohort 1 and cohort 2. –
page 46
Figure 28: Percentage of children and young people diagnosed with epilepsy by
prolonged generalised convulsive epileptic seizures in England and Wales by Round 3
cohort 1 and cohort 2. – page 47
Figure 29: Percentage of children and young people diagnosed with epilepsy by
prolonged focal convulsive epileptic seizures in England and Wales by Round 3 cohort 1
and cohort 2. – page 48
Figure 30: Percentage of children and young people diagnosed with epilepsy with/with
no family history of epilepsy in England and Wales by Round 3 cohort 1 and cohort 2. –
page 49
Figure 31: Neurodisability/neurodevelopmental problems among children diagnosed
with epilepsy. – page 52
Figure 32: Time in weeks to when EEG was obtained since EEG request date in England
and Wales, Round 3, cohort 1 and cohort 2. – page 56
Figure 33: Percentage of children and young people diagnosed with epilepsy that
obtained First EEG, 12 lead ECG, CT head scan and MRI brain investigations in England
and Wales, Round 3, cohort 1 and cohort 2. – page 58
Figure 34: Percentage of children and young people with convulsive seizures and
epilepsy, with an ECG at first year of care by Health Board and Trust, Round 3, cohort 2. –
page 59
Figure 35: Percentage of children and young people with defined indications for an MRI,
who had MRI by first year of care by Health Board and Trust, Round 3, cohort 2. – page 60
Figure 36: Percentage of children and young people diagnosed with epilepsy by AED
type in England and Wales, Round 3, cohort 2. – page 62
Figure 37: Number of children and young people diagnosed with epilepsy on sodium
valproate by gender in England and Wales, Round 3, cohort 2. – page 63

95

Figure 38: Percentage of females currently on sodium valproate treatment with evidence
of discussion of foetal risk by Health Board and Trust, Round 3, cohort 2. – page 65
Figure 39: Percentage of children and young people diagnosed with epilepsy that
had/did not have rescue medication prescribed in England and Wales. – page 66
Figure 40: Percentage of children and young people diagnosed with epilepsy that had
rescue medication prescribed by country and network. - page 66
Figure 41: Percentage of children and young people diagnosed with epilepsy that
met/did not meet any CESS referral criteria in England and Wales, Round 3, cohort 1 and
cohort 2. – page 67
Figure 42: Percentage of children and young people diagnosed with epilepsy that met
any CESS referral criteria by country and network. – page 68
Figure 43: Time in weeks since referral to neurologist in England and Wales. – page 70
Figure 44: Comprehensive Care Planning agreement, Round 3 Cohort 2. – page 72
Figure 45: Comprehensive Care Planning content by Health Board and Trust, Round 3
Cohort 2. – page 74
Figure 46: School Individual Healthcare Plan, by Health Board or Trust, Round 3, cohort 2.
– page 75
Figure 47: Percentage of children and young people diagnosed with Epilepsy
with/without evidence of SUDEP information in England and Wales. – page 76
Figure 48: Percentage of children and young people diagnosed with evidence of SUDEP
information by country and network. – page 76
Figure 49: Percentage of children and young people diagnosed with epilepsy with input
from various professionals in England and Wales. – page 78
Figure 50: Paediatrician with expertise in epilepsies by Health Board and Trust, Round 3,
cohort 2. – page 79
Figure 51: Input from an ESN by Health Board and Trust, Round 3, cohort 2. – page 80
Figure 52: Tertiary input by Health Board and Trust, Round 3, cohort 2. – page 81
Figure 53: Percentage of children and young people diagnosed with epilepsy with
relevant ongoing investigation in England and Wales. – page 82
Figure 54: Accuracy of diagnosis by Health Board and Trust, Round 3, cohort 2. – page 83

Overview of performance indicators
Figure 1: Performance indicators in England and Wales across Rounds 1, 2, 3, cohort 1 and
cohort 2. – page 85

96

Figure 2: Epilepsy12 Performance indicators for England and Wales, across Rounds 1, 2, 3,
cohort 1 and cohort 2. – page 85
Figure 3: Epilepsy12 Performance indicators for England, across Rounds 1, 2, 3, cohort 1
and cohort 2. – page 86
Figure 4: Epilepsy12 Performance indicators for Wales, across Rounds 1, 2, 3, cohort 1 and
cohort 2. – page 86
Figure 5: Epilepsy12 Performance indicators in England and Wales in Round 3 cohort 2
and Cohort 1. – page 87
Figure 6: Epilepsy12 Performance indicators by country, Round 3 cohort 2. – page 88

Figure 7: Epilepsy12 Performance indicators in England and Wales, Round 3, cohort 2 only
– page 89

97

Data completeness
The data submitted to Epilepsy12 shows that during the COVID-19 pandemic services
have done very well to maintain care for children and young people with epilepsy.
However, there were also services and aspects of ‘timeliness’ that indicate some of the
risks and pressures in the system.

We recommend that epilepsy services be supported by their Trust or Health Board’s
management and the commissioning organisations to:
•
develop a defined epilepsy team approach to service provision and service
improvement,
•
allocate time within job plans to support team functions including dedicated time
for audit participation and related quality improvement actions.

Outlier identification and management
Epilepsy12 manages outlier status in line with the RCPCH policy Detection and
Management of Outlier Status for Clinical Indicators in National Clinical Audits. The
approach and timelines associated with Epilepsy12 are set out in a document entitled
RCPCH management of outlier management policy for national clinical audits.

98

Participating Health Boards and Trusts by OPEN UK
region
The following list shows the NHS Health Boards and Trusts across England and Wales
that submitted data to the Epilepsy12 Round 3 cohort 2 clinical and organisational audit
in 2019-20.
Birmingham Regional Paediatric Neurology Forum (BRPNF)
Birmingham Women's and Children's NHS Foundation Trust*
South Warwickshire NHS Foundation Trust
The Dudley Group NHS Foundation Trust
University Hospitals Coventry and Warwickshire NHS Trust
Walsall Healthcare NHS Trust*
Worcestershire Acute Hospitals NHS Trust
Worcestershire Health and Care NHS Trust
Wye Valley NHS Trust
Children's Epilepsy Workstream in Trent (CEWT)
Nottingham University Hospitals NHS Trust
Sherwood Forest Hospitals NHS Foundation Trust
United Lincolnshire Hospitals NHS Trust
University Hospitals of Derby and Burton NHS Foundation Trust
Eastern Paediatric Epilepsy Network (EPEN)
Bedford Hospital NHS Trust
Cambridge University Hospitals NHS Foundation Trust
East and North Hertfordshire NHS Trust
East Suffolk and North Essex NHS Foundation Trust
Luton and Dunstable University Hospital NHS Foundation Trust
Norfolk Community Health and Care NHS Trust
North West Anglia NHS Foundation Trust
The Queen Elizabeth Hospital, King's Lynn, NHS Foundation Trust
Mersey and North Wales network 'Epilepsy In Childhood' interest group (EPIC)
Alder Hey Children's NHS Foundation Trust
Betsi Cadwaladr University LHB
Countess of Chester Hospital NHS Foundation Trust
Shrewsbury and Telford Hospital NHS Trust
Southport and Ormskirk Hospital NHS Trust
St Helens and Knowsley Hospitals NHS Trust

99

Warrington and Halton Hospitals NHS Foundation Trust
Wirral University Teaching Hospital NHS Foundation Trust
North Thames Paediatric Epilepsy Network (NTPEN)
Barts Health NHS Trust
Central and North West London NHS Foundation Trust
Chelsea and Westminster Hospital NHS Foundation Trust
Homerton University Hospital NHS Foundation Trust
Imperial College Healthcare NHS Trust
London North West Healthcare NHS Trust
North Middlesex University Hospital NHS Trust
Royal Free London NHS Foundation Trust
Southend University Hospital NHS Foundation Trust
The Hillingdon Hospitals NHS Foundation Trust
The Whittington Hospital NHS Trust
University College London Hospitals NHS Foundation Trust
West Hertfordshire Hospitals NHS Trust
North West Children and Young People's Epilepsy Interest Group (NWEIG)
Bolton NHS Foundation Trust
East Cheshire NHS Trust*
East Lancashire Hospitals NHS Trust*
Manchester University NHS Foundation Trust
Northern Care Alliance NHS Group
Stockport NHS Foundation Trust*
Tameside and Glossop Integrated Care NHS Foundation Trust
University Hospitals of Morecambe Bay NHS Foundation Trust*
Wrightington, Wigan and Leigh NHS Foundation Trust
Oxford region epilepsy interest group (ORENG)
Great Western Hospitals NHS Foundation Trust
Kettering General Hospital NHS Foundation Trust
Milton Keynes University Hospital NHS Foundation Trust
Northampton General Hospital NHS Trust
Oxford University Hospitals NHS Foundation Trust
Royal Berkshire NHS Foundation Trust
Paediatric Epilepsy Network for the North East and Cumbria (PENNEC)
County Durham and Darlington NHS Foundation Trust
Gateshead Health NHS Foundation Trust
North Cumbria Integrated Care NHS Foundation Trust

100

North Tees and Hartlepool NHS Foundation Trust
Northumbria Healthcare NHS Foundation Trust
South Tees Hospitals NHS Foundation Trust
South Tyneside and Sunderland NHS Foundation Trust
The Newcastle Upon Tyne Hospitals NHS Foundation Trust
South East Thames Paediatric Epilepsy Group (SETPEG)
Dartford and Gravesham NHS Trust
East Kent : QEQM, Margate and WHM, Ashford, Kent*
East Sussex Healthcare NHS Trust
Guy's and St Thomas' NHS Foundation Trust
King's College Hospital NHS Foundation Trust
Lewisham and Greenwich NHS Trust
Maidstone and Tunbridge Wells NHS Trust
South Wales Epilepsy Forum (SWEP)
Cwm Taf LHB
South West Interest Group Paediatric Epilepsy (SWIPE)
Gloucestershire Hospitals NHS Foundation Trust
Royal Cornwall Hospitals NHS Trust
Royal Devon and Exeter NHS Foundation Trust
Royal United Hospitals Bath NHS Foundation Trust
Somerset NHS Foundation Trust*
Torbay and South Devon NHS Foundation Trust
University Hospitals Bristol NHS Foundation Trust
South West Thames Paediatric Epilepsy Group (SWTPEG)
Ashford and St Peter's Hospitals NHS Foundation Trust
Epsom and St Helier University Hospitals NHS Trust
Frimley Health NHS Foundation Trust
Kingston Hospital NHS Foundation Trust
Royal Surrey County Hospital NHS Foundation Trust
St George's University Hospitals NHS Foundation Trust
Trent Epilepsy Network (TEN)
Barnsley Hospital NHS Foundation Trust
Chesterfield Royal Hospital NHS Foundation Trust
Doncaster and Bassetlaw Teaching Hospitals Foundation Trust
Northern Lincolnshire and Goole NHS Foundation Trust
Sheffield Children's NHS Foundation Trust
The Rotherham NHS Foundation Trust

101

Wessex Paediatric Neurosciences Network (WPNN)
Dorset County Hospital NHS Foundation Trust
Isle of Wight NHS Trust*
Poole Hospital NHS Foundation Trust
Salisbury NHS Foundation Trust
Western Sussex Hospitals NHS Foundation Trust*
Yorkshire Paediatric Neurology Network (YPEN)
Airedale NHS Foundation Trust
Bradford Teaching Hospitals NHS Foundation Trust
Harrogate and District NHS Foundation Trust
Hull and East Yorkshire Hospitals NHS Trust*
Leeds Teaching Hospitals NHS Trust
Mid Yorkshire Hospitals NHS Trust
York Teaching Hospital NHS Foundation Trust

*Trusts that were not included within the 2020 organisational results due to data that was not
submitted on time to the audit.

The following Trusts merged prior to the November 2020 organisational audit.
Merged Trust title
Regional
Network Before Trusts merged
East Suffolk and North Essex
NHS Foundation Trust
EPEN
Colchester Hospital University NHS
Foundation Trust
Ipswich Hospital NHS Trust
Northern care Alliance NHS
Group
NWEIG
Salford Royal NHS Foundation Trust
Northern Care Alliance NHS Group
South Tyneside and Sunderland
NHS Foundation Trust
PENNEC
City Hospitals Sunderland NHS Foundation
Trust
South Tyneside NHS Foundation Trust
University Hospitals of Derby
and Burton NHS Foundation
Trust
CEWT
Derby Teaching Hospitals NHS Foundation
Trust
Burton Hospitals NHS Foundation Trust
Somerset NHS Foundation Trust
SWIPE
Taunton and Somerset NHS Foundation
Trust
Somerset Partnership NHS Foundation
Trust
Swansea Bay UHB
SWEP
Abertawe Bro Morgannwg University
Health Board

102

The following Trusts and Health Boards were not included within the cohort 2 clinical
audit results:
Health Board or Trust
Regional Network
Swansea Bay UHB
SWEP
Aneurin Bevan LHB+
SWEP
Barking, Havering and Redbridge University Hospitals NHS Trust
NTPEN
Basildon and Thurrock University Hospitals NHS Foundation Trust+
NTPEN
Birmingham Community Healthcare NHS Foundation Trust
BRPNF
Blackpool Teaching Hospitals NHS Foundation Trust+
NWEIG
Brighton and Sussex University Hospitals NHS Trust
SETPEG
Brighton and Sussex University Hospitals NHS Trust+
SETPEG
Buckinghamshire Healthcare NHS Trust
ORENG
Calderdale and Huddersfield NHS Foundation Trust
YPEN
Cambridgeshire Community Services NHS Trust
EPEN
Cardiff & Vale University LHB+
SWEP
Coventry and Warwickshire Partnership NHS Trust+
BRPNF
Croydon Health Services NHS Trust+
SWTPEG
George Eliot Hospital NHS Trust+
BRPNF
Great Ormond Street Hospital for Children NHS Foundation Trust ~
NTPEN
Hampshire Hospitals NHS Foundation Trust
WPNN
Hywel Dda LHB
SWEP
James Paget University Hospitals NHS Foundation Trust+
EPEN
Lancashire Teaching Hospitals NHS Foundation Trust
NWEIG
Leeds Community Healthcare NHS Trust+
YPEN
Leicestershire Partnership NHS Trust
CEWT
Medway NHS Foundation Trust+
SETPEG
Mid Cheshire Hospitals NHS Foundation Trust
EPIC
Mid Essex Hospital Services NHS Trust
EPEN
Norfolk and Norwich University Hospitals NHS Foundation Trust
EPEN
North East London NHS Foundation Trust+
NTPEN
Northern Devon Healthcare NHS Trust+
SWIPE
Plymouth Hospitals NHS Trust+
SWIPE
Portsmouth Hospitals NHS Trust+
WPNN
Sandwell and West Birmingham Hospitals NHS Trust+
BRPNF
Solent NHS Trust
WPNN
Surrey and Sussex Healthcare NHS Trust+
SWTPEG

103

Sussex Community NHS Foundation Trust+
SETPEG
The Princess Alexandra Hospital NHS Trust+
EPEN
The Royal Wolverhampton NHS Trust
BRPNF
University Hospitals Birmingham NHS Foundation Trust
BRPNF
University Hospitals of Leicester NHS Trust
CEWT
University Hospitals of North Midlands NHS Trust
NWEIG
West Suffolk NHS Foundation Trust
EPEN
Weston Area Health NHS Trust+
SWIPE
Yeovil District Hospital NHS Foundation Trust+
SWIPE

~Tertiary Trust that does not conduct first assessments for children with epilepsy or seizures.

+ Health Boards or Trusts that were not included within the 2018-2019 cohort 1 clinical audit results.

Epilepsy12 National Organisational Audit Report 2018
Royal College of Paediatrics
and Child Health
5-11 Theobalds Road,
London, WC1X 8SH
The Royal College of Paediatrics and Child Health (RCPCH) is a registered charity in England and Wales (1057744) and in
Scotland (SC038299).
Healthcare Quality
Improvement Partnership (HQIP)
Dawson House, 5 Jewry Street,
London EC3N 2EX
Royal College of
Paediatrics and Child Health
RCPCH
Published by the RCPCH July 2021
Epilepsy12
Combined organisational and clinical audits:
Report for England and Wales Round 3 Cohort 2 (2019-20)