Epilepsy12 2020 clinical audit report on 2018-2019 data
Source: data.gov.uk (2020-10-02)

Epilepsy12 2020 National organisational and clinical audits - combined report on 2019 data. This is the first formal release of Round 3 clinical audit data for cohort 1 and the second publication of paediatric epilepsy services organisational data of the Epilepsy12 audit. This is a combined report of the organisational and clinical audits.

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 2019, and the standard of clinical care provided by services that focuses on patients with a new diagnosis of epilepsy between 12 July 2018 – 30 November 2018 for cohort 1.

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-2019

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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 1
(2018-19)
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

© 2020 Healthcare Quality Improvement Partnership (HQIP)
Published by RCPCH September 2020.
The Royal College of Paediatrics and Child Health is a registered charity in England and Wales
(1057744) and in Scotland (SCO38299).

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Appendices

The Epilepsy12 combined report for 2020 includes a description of key findings,
recommendations, quality improvement activities, and patient involvement in Epilepsy12. It is
available to download from Epilepsy12.
Appendix: Full Epilepsy12 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 G: Full Epilepsy12 clinical audit results for Round 3, Cohort 1

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Appendix H: List of clinical data figures & tables

87
Appendix I: Data completeness

92
Appendix J: Participating Health Boards and Trusts by OPEN UK region

95
Appendix K: Glossary of terms and abbreviations

100

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The 16 OPEN UK Regional Paediatric Epilepsy Networks are named in the following table. The
abbreviated regional network names appear in the regional network results of both the clinical
and organisational audits in this report.
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
NI
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

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Appendix D: Full Epilepsy12 clinical
audit results for Round 3, Cohort 1

Participation and case ascertainment
Participation
Table 47 provides a breakdown on Epilepsy12 Round 3 participation by Paediatric Epilepsy
Networks and by country.
•
There are 149 registered Health Boards and Trusts in Round 3 of Epilepsy12,
•
113 out of 149 (75.8%) 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 1.

Table 47: Participation in Round 3 of Epilepsy12.
Country/network
Number of registered Health
Boards and Trusts
Number of Health Boards and Trusts that
have submitted clinical audit data
England & Wales
149
75.8% (113/149)
England
143
76.2% (109/143)
Wales
6
66.7% (4/6)

BRPNF
15
73.3% (11/15)
CEWT
6
100% (6/6)
EPEN
15
66.7% (10/15)
EPIC
9
100% (9/9)
NTPEN
17
70.6% (12/17)
NWEIG
13
84.6% (11/13)
ORENG
7
100% (7/7)
PENNEC
9
77.8% (7/9)
SETPEG
11
45.5% (5/11)
SWEP
5
60.0% (3/5)
SWIPE
11
54.5% (6/11)
SWTPEG
7
71.4% (5/7)
TEN
6
100% (6/6)
WPNN
9
77.8% (7/9)
YPEN
9
88.9% (8/9)

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Case ascertainment
Table 48 shows between 5th July 2018 and 8th January 2020, a total of 10,649 children and young
people were registered via an EEG service and a further 3,954 registered by the Health Boards
and Trusts.
•
By download date (8th January 2020) 10,954 children and young people were verified for
inclusion in Round 3 and beyond cohorts.
•
In addition to the registered children and young people, 1,280 children and young
people were excluded at verification stage because they did not meet the audit
inclusion criteria,
•
22 families had requested their children to be opted out of the audit post verification
stage.

Table 48: 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 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 &Wales
10649
3942
10954
3615
22
1280
England
10228
3823
10542
3488
21
1177
Wales
421
119
412
127
1
103

BRPNF
919
299
967
251
0
154
CEWT
828
125
743
206
4
60
EPEN
774
273
648
399
0
144
EPIC
98
455
508
44
1
68
NTPEN
1602
219
1189
631
1
188
NWEIG
728
296
773
251
0
124
ORENG
1278
225
993
510
0
114
PENNEC
536
434
841
129
0
35
SETPEG
316
275
521
70
0
59
SWEP
324
100
337
87
0
75
SWIPE
887
288
936
231
8
105
SWTPEG
457
350
658
142
7
35
TEN
624
125
592
157
0
32
WPNN
795
106
483
417
1
65
YPEN
483
372
765
90
0
22

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Table 49 (below) shows a comparison of the details of the number of children and young people
that were assessed as eligible for Round 2 and Round 3 audits. The total number of children and
young people allocated to the cohort was higher in Round 3 (4684) than Round 2 (3350) in
England and Wales combined.
Of the 4684 children and young people who met the audit criteria in Round 3 and were verified
and allocated to cohort 1, 70.8% were successfully entered on the data capture system. The data
completeness in Round 3 was lower (70.8%) compared to Round 2 (91.7%).
Table 49: Number of children and young people registered as eligible for the audit

Round 2
Round 3
Description of eligible criteria
England
and Wales
England
Wales
England
and Wales
England
Wales
Children registered (by EEG
services and the HBTs)
12973
12391
582
14591
14051
540
Children excluded (did not
meet audit inclusion criteria)
8832
8479
353
1280
1177
103
Children allocated to cohort
(for Round 3 the data refers to
only cohort 1)
3350
3174
176
4684
4490
194
Children allocated to cohort
who had their first year of care
data successfully entered on
data capture system
3072
2907
165
3318
3195
123
Children allocated to cohort
but their first year of care data
was not successfully entered
on data capture system
272
261
11
1366
1295
71
Data completeness
91.7%
(3072/3350)
91.6%
(2907/3174)
93.8%
(165/176)
70.8%
(3318/4684)
71.1%
(3195/4490)
63.4 %
(123/194)

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Health Board and Trust ascertainment

Figure 30 shows the proportion of children and young people who were registered and verified
on the data capture system by each of the Health Boards and Trusts by the download date (8th
January 2020). One quarter of the Health Boards and Trusts verified all the children and young
people that were registered as eligible for the audit. Unverified children and young people
includes children who may be allocated to cohort 1, 2 or 3 at verification stage, or who may be
excluded.

Figure 30: 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%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
% of children and young people that were verified
Health Board/Trust

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Health Board and Trust data completeness

Figure 31 shows the proportion of children and young people allocated to Round 3, cohort 1,
that had their first year of care form submitted and locked on the data capture system, by each
of the Health Boards and Trusts by the download date (8th January 2020). Nationally nearly half
of the registered Health Board or Trust submitted and locked the first year of care form for all
the children allocated to cohort 1 in Round 3.

Figure 31: The percentage of children and young people within cohort 1 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%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
% of children and young people that had their frst year of care form locked
Health Board/Trust

10

Description of cohort 1

Age and sex

Figure 32 shows the number of children and young people in cohort 1 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. The largest age groups in cohort 1 were younger children;
infants below one year of age, and children aged one or two years old. The number of children
and young people in cohort 1 is highest in infancy and decreases among older year groups, in
particular for young people aged 16 or 17. This is likely to reflect some of the older young people
in our cohort age range being assessed within adult services. There were more boys than girls
in each year group until age 14.
Figure 32: Numbers of children and young people included in cohort 1 by age in years at first
paediatric assessment and gender. (This figure excludes 6 children with unknown gender).

0
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
Female 236
172
138
102
69
76
67
79
60
64
60
63
61
70
75
74
25
5
Male
273
174
164
129
121
96
96
83
91
95
88
66
82
84
75
66
24
9
All
509
346
302
231
190
172
163
162
151
159
148
129
143
154
150
140
49
14
0
100
200
300
400
500
600
Number of children and young people in
cohort 1
Age in years at first paediatric assessment

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Figure 33 shows the number of children and young people in cohort 1 who were less than two
years of age at first paediatric assessment. This is broken down by age in months and gender.
The most common time for children below two years of age to have a first paediatric
assessment was in either their first month of life (81) or at seven-months old (59).

Figure 33: Numbers of children and young people included in cohort 1 by age in months at first
paediatric assessment and gender. (This figure excludes 3 children with unknown gender).

Table 50 shows the proportion of children and young people in different age groups, by
country or by paediatric epilepsy network area. In cohort 1:
•
25.9% of the children and young people were aged between one month and two years,
•
21.8 % were aged between two and four years,
•
32.7% were aged between five and eleven years,
•
19.6% were aged over twelve years of age.

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 39
17
18
17
22
18
17
25
22
12
13
16
21
16
13
12
16
12
13
19
15
18
6
11
Male
42
17
26
15
22
22
16
34
22
23
16
18
16
13
18
15
15
9
16
13
16
21
12
10
All
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
10
20
30
40
50
60
70
80
90
Number of children and young people
cohort 1
Age in months at first paediatric assessment

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Table 50: Number of children and young people in cohort 1 by country, network and age-
group.
Country/network
% <2 years
% 2 - 4 years
% 5 - 11 years
% >=12 years
England & Wales
(N=3318)
25.9% (858/3318)
21.8% (723/3318)
32.7% (1086/3318)
19.6% (651/3318)
England (N=3195)
26% (832/3195)
21.6% (690/3195)
32.7% (1046/3195)
19.6% (627/3195)
Wales (N=123)
21.1% (26/123)
26.8% (33/123)
32.5% (40/123)
19.5% (24/123)

BRPNF (N=248)
23.8% (59/248)
17.7% (44/248)
33.5% (83/248)
25.0% (62/248)
CEWT (N=281)
27.4% (77/281)
16.7% (47/281)
35.2% (99/281)
20.6% (58/281)
EPEN (N=210)
23.8% (50/210)
23.3% (49/210)
38.1% (80/210)
14.8% (31/210)
EPIC (N=207)
24.2% (50/207)
28.5% (59/207)
32.4% (67/207)
15.0% (31/207)
NTPEN (N=298)
27.9% (83/298)
18.1% (54/298)
35.6% (106/298)
18.5% (55/298)
NWEIG (N=222)
25.2% (56/222)
21.6% (48/222)
36.0% (80/222)
17.1% (38/222)
ORENG (N=299)
22.4% (67/299)
20.7% (62/299)
35.1% (105/299)
21.7% (65/299)
PENNEC (N=237)
27.4% (65/237)
25.3% (60/237)
29.1% (69/237)
18.1% (43/237)
SETPEG (N=52)
30.8% (16/52)
17.3% (9/52)
23.1% (12/52)
28.8% (15/52)
SWEP (N=112)
21.4% (24/112)
26.8% (30/112)
30.4% (34/112)
21.4% (24/112)
SWIPE (N=272)
26.1% (71/272)
27.2% (74/272)
26.8% (73/272)
19.9% (54/272)
SWTPEG (N=186)
29.0% (54/186)
19.9% (37/186)
31.7% (59/186)
19.4% (36/186)
TEN (N=222)
28.8% (64/222)
23.0% (51/222)
29.7% (66/222)
18.5% (41/222)
WPNN (N=152)
28.9% (44/152)
24.3% (37/152)
30.3% (46/152)
16.4% (25/152)
YPEN (N=320)
24.4% (78/320)
19.4% (62/320)
33.4% (107/320)
22.8% (73/320)

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Table 51 (below) shows the median age of children included in Round 3, cohort 1, was 5 years
old. 45.1% of the children were female. There are no clear differences in demographics between
England and Wales. The sample window for Round 1, Round 2 and Round 3, cohort 1, was; 6
months, 4 months and 4.5 months respectively, hence the difference in cohort sizes.
Table 51: Demographic characteristics of children included in Round 1, 2 and 3 of Epilepsy12.

Median age
Round 1
Round 2
Round 3

UK
England
Wales
UK
England
Wales
UK
England
Wales
N
4310
4085
225
3072
2907
165
3318
3195
123
% Female
46.0%
46.0%
49.0%
45.0%
45.0%
45.0%
45.1%
45.0%
48.0%
Median age (years)
+
6.4
7.5
+
5.3
5.9
5.4
5.4
5.3
25th centile (years)
+
2.2
3.1
+
2
2.5
1.8
1.8
2.3
75thcentile (years)
+
10.7
12.1
+
10.2
10.3
10.6
10.6
10.7
Infants
(1 month to < 2 years)
22.7%
23.0%
18.0%
24.7%
25.0%
21.0%
25.9%
26.0%
21.1%
Pre-school
(2-4 years)
19.8%
20.0%
17.0%
23.8%
24.0%
21.0%
21.8%
21.6%
26.8%
School (5-11 years)
37.1%
37.0%
39.0%
34.3%
34.0%
39.0%
32.7%
32.7%
32.5%
Young people
(12-15 years)
19.3%
19.0%
25.0%
17.1%
17.0%
19.0%
17.7%
17.7%
17.1%
+ UK median and centile values were not available for comparison for this metric
Figure 34 shows the overall proportions of the children by age groups are similar in Round 1,
Round 2 and Round 3.

Figure 34: Comparison of the proportion of children and young people by age group in Round
1, Round 2 and Round 3.
17.7%
32.7%
21.8%
25.9%
17.1%
34.3%
23.8%
24.7%
19.3%
37.1%
19.8%
22.7%
0%
5%
10%
15%
20%
25%
30%
35%
40%
12- 15 years
5 - 11 years
2 - 4 years
<2 years
% of children and young people
Age group
Round 1
Round 2
Round 3

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Deprivation
Table 52 shows the breakdown of children and young people in Epilepsy12 cohort 1 by
deprivation quintile. This was derived by matching home postcodes to the English (IMD, 2019)
and Welsh (WIMD, 2019) indices of multiple deprivation data. A small proportion 32 (1.0%) of
children and young people could not be allocated to a deprivation quintile, because their
postcodes had no matching lower super output area (LSOA) in the deprivation datasets. Over
half of the children and young people in cohort 1 lived in neighbourhoods that are among the
most deprived areas of England and Wales, (50.2% in the top two most deprived quintiles).
Table 52: Percentage and number of children and young people in cohort 1 by deprivation by
country and network.
Country/network
Most deprived
Second most
deprived
Third least
deprived
Second least
deprived
Least deprived
England &Wales
(N=3286)
28.2% (926/3286)
22% (724/3286)
18.8% (619/3286)
17.3% (567/3286)
13.7% (450/3286)
England (N=3166)
28.2% (892/3166)
22.0% (698/3166)
18.7% (591/3166)
17.2% (545/3166)
13.9% (440/3166)
Wales (N=120)
28.3% (34/120)
21.7% (26/120)
23.3% (28/120)
18.3% (22/120)
8.3% (10/120)

BRPNF (N=247)
37.7% (93/247)
18.6% (46/247)
17.4% (43/247)
15.4% (38/247)
10.9% (27/247)
CEWT (N=281)
27.8% (78/281)
22.1% (62/281)
18.9% (53/281)
17.1% (48/281)
14.2% (40/281)
EPEN (N=209)
15.3% (32/209)
15.8% (33/209)
25.4% (53/209)
24.9% (52/209)
18.7% (39/209)
EPIC (N=203)
43.3% (88/203)
17.2% (35/203)
16.7% (34/203)
16.3% (33/203)
6.4% (13/203)
NTPEN (N=295)
25.4% (75/295)
31.9% (94/295)
19.7% (58/295)
13.2% (39/295)
9.8% (29/295)
NWEIG (N=221)
48.4% (107/221)
20.8% (46/221)
10.9% (24/221)
12.7% (28/221)
7.2% (16/221)
ORENG (N=292)
15.1% (44/292)
16.8% (49/292)
16.1% (47/292)
27.1% (79/292)
25% (73/292)
PENNEC (N=234)
44.4% (104/234)
24.4% (57/234)
11.5% (27/234)
13.2% (31/234)
6.4% (15/234)
SETPEG (N=52)
19.2% (10/52)
34.6% (18/52)
21.2% (11/52)
17.3% (9/52)
7.7% (4/52)
SWEP (N=109)
30.3% (33/109)
22.0% (24/109)
23.9% (26/109)
16.5% (18/109)
7.3% (8/109)
SWIPE (N=271)
12.9% (35/271)
26.6% (72/271)
30.3% (82/271)
17.3% (47/271)
12.9% (35/271)
SWTPEG (N=184)
1.1% (2/184)
19.6% (36/184)
15.8% (29/184)
25% (46/184)
38.6% (71/184)
TEN (N=221)
42.1% (93/221)
25.3% (56/221)
15.8% (35/221)
8.6% (19/221)
8.1% (18/221)
WPNN (N=151)
10.6% (16/151)
21.9% (33/151)
33.1% (50/151)
17.9% (27/151)
16.6% (25/151)
YPEN (N=316)
36.7% (116/316)
19.9% (63/316)
14.9% (47/316)
16.8% (53/316)
11.7% (37/316)

15

Figure 35 shows that the proportion of children and young people in cohort 1 living in the most
deprived quintiles was significantly higher than the proportion living in the least deprived
quintiles of England and Wales.
Figure 36 shows the deprivation indices for children and young people’s home addresses for
each of the regional paediatric epilepsy networks. This shows that there are considerable
differences between networks, and also variation from the overall picture for England and Wales.

Figure 35: Percentage of children and young people in cohort 1 by deprivation quintile in
England and Wales combined.

28.2%
22.0%
18.8%
17.3%
13.7%
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 cohort 1
Deprivation quintile

16

Figure 36 shows a comparison of the proportion of children and young people by deprivation
quintile and by country/network.

Figure 36: Percentage of children and young people in cohort 1 by deprivation by
country/network.
36.7%
10.6%
42.1%
1.1%
12.9%
30.3%
19.2%
44.4%
15.1%
48.4%
25.4%
43.3%
15.3%
27.8%
37.7%
28.3%
28.2%
28.9%
19.9%
21.9%
25.3%
19.6%
26.6%
22.0%
34.6%
24.4%
16.8%
20.8%
31.9%
17.2%
15.8%
22.1%
18.6%
21.7%
22.0%
22.0%
14.9%
33.1%
15.8%
15.8%
30.3%
23.9%
21.2%
11.5%
16.1%
10.9%
19.7%
16.7%
25.4%
18.9%
17.4%
23.3%
18.7%
18.8%
16.8%
17.9%
8.6%
25.0%
17.3%
16.5%
17.3%
13.2%
27.1%
12.7%
13.2%
16.3%
24.9%
17.1%
15.4%
18.3%
17.2%
17.3%
11.7%
16.6%
8.1%
38.6%
12.9%
7.3%
7.7%
6.4%
25.0%
7.2%
9.8%
6.4%
18.7%
14.2%
10.9%
8.3%
13.9%
13.7%
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 1
Country/Network
Most deprived
Second most deprived
Third least deprived
Second least deprived
Least deprived

17

Diagnostic status
Prior experience of seizures
Table 53 shows 2.7% (91/3318) of children and young people in Round 3, cohort 1, had prior
experience of neonatal seizures.
8.4% (279/3318) had prior experience of febrile seizures. 6.2% (205/3318) 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, (Figure 38).
Table 53: Prior experience of seizures in children and young people in cohort 1 in England and
Wales.

Description of neonatal seizures

% with prior
seizures

% without prior
seizures

% Uncertain about
prior seizures
Neonatal seizure(s)
2.7% (91/3318)

85.3% (2831/3318)
11.9% (396/3318)
Febrile seizure(s)
8.4% (279/3318)
80.6% (2674/3318)
11.0% (365/3318)
Acute symptomatic seizure (s)
6.2% (205/3318)
83.4% (2767/3318)
10.4% (346/3318)

18

Figure 37: Percentage of children and young with/without prior experience of seizures.
Table 54 shows the diagnostic status of children and young people in cohort 1 in the first year of
care. In England and Wales combined, 32.3% (1073/3318), children and young people were
diagnosed with epilepsy because they had two or more epileptic episodes more than 24 hours
apart. 1.2% (39/3318) of children and young people were diagnosed with epilepsy for other
reasons. This means, in total, 33.5% (1112) of children were diagnosed with epilepsy in cohort 1.

For children and young people who had recorded seizure episodes, but were not diagnosed
with epilepsy, there were:
•
38.4% (1275/3318) who had non-epileptic episodes only,
•
3.2% (107/3318) who had a single epileptic episode,
•
1.4% (46/3318) who had a cluster of epileptic episodes within 24 hours,
•
For 23.4% (778/3318) children and young people, there was uncertainty whether the
episodes were epileptic or not.

Figure 38 shows the percentages of children and young people in cohort 1 by diagnostic status
in England and Wales.
2.7%
8.4%
6.2%
85.3%
80.6%
83.4%
11.9%
11.0%
10.4%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Neonatal seizure(s)
Febrile seizure(s)
Acute symptomatic seizure(s)
% of children and young people in cohort 1
Prior experience of seizures
Yes
No
Uncertain

19

Table 54: 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 & Wales
(N=3318)
32.3% (1073/3318)
1.2% (39/3318)
3.2% (107/3318)
1.4% (46/3318)
38.4% (1275/3318)
23.4% (778/3318)
England (N=3195)
31.7% (1013/3195)
1.2% (38/3195)
3.3% (105/3195)
1.4% (46/3195)
39.1% (1248/3195)
23.3% (745/3195)
Wales (N=123)
48.8% (60/123)
*
*
0.0% (0/123)
22.0% (27/123)
26.8% (33/123)

BRPNF (N=248)
36.3% (90/248)
*
2.4% (6/248)
*
36.3% (90/248)
22.6% (56/248)
CEWT (N=281)
32.4% (91/281)
*
4.3% (12/281)
*
42.7% (120/281)
16.4% (46/281)
EPEN (N=210)
30.5% (64/210)
5.2% (11/210)
*
*
24.3% (51/210)
35.7% (75/210)
EPIC (N=207)
53.1% (110/207)
*
2.4.0% (5/207)
*
28.5% (59/207)
14.5% (30/207)
NTPEN (N=298)
32.2% (96/298)
*
4.4% (13/298)
*
31.2% (93/298)
30.2% (90/298)
NWEIG (N=222)
30.2% (67/222)
*
4.1% (9/222)
*
41.9% (93/222)
23.4% (52/222)
ORENG (N=299)
29.1% (87/299)
*
4.0% (12/299)
*
37.8% (113/299)
25.8% (77/299)
PENNEC (N=237)
26.6% (63/237)
*
2.5% (6/237)
*
43% (102/237)
25.7% (61/237)
SETPEG (N=52)
36.5% (19/52)
*
0.0% (0/52)
*
19.2% (10/52)
34.6% (18/52)
SWEP (N=112)
44.6% (50/112)
*
*
0.0% (0/112)
24.1% (27/112)
28.6% (32/112)
SWIPE (N=272)
26.1% (71/272)
*
1.8% (5/272)
*
50.4% (137/272)
20.6% (56/272)
SWTPEG (N=186)
34.4% (64/186)
*
5.9% (11/186)
*
45.2% (84/186)
12.4% (23/186)
TEN (N=222)
23.4% (52/222)
*
2.7% (6/222)
*
47.3% (105/222)
24.8% (55/222)
WPNN (N=152)
26.3% (40/152)
*
*
*
44.1% (67/152)
25.0% (38/152)
YPEN (N=320)
34.1% (109/320)
*
3.1% (10/320)
*
38.8% (124/320)
21.6% (69/320)
* In accordance with information governance rules, data based on a number less than five has been masked

20

Figure 38: Percentage of children and young people in Cohort 1 by diagnostic status at first
year of care, in England and Wales.

21

Table 55 shows the diagnostic status of children and young people in cohort 1 in the first
paediatric assessment. The number of children where there remains uncertainty as to whether
the episodes were epileptic or not, reduced from 35.8% (1172) in the first paediatric assessment,
to 23.4% (778) in the first year of care, (Figure 39).
Table 55: 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 &Wales
(N=3318)
29.9% (992/3318)
1.5% (49/3318)
4.2% (141/3318)
1.8% (61/3318)
27.2% (903/3318)
35.3% (1172/3318)
England (N=3195)
29.2% (932/3195)
1.5% (48/3195)
4.3% (137/3195)
1.9% (61/3195)
27.4% (877/3195)
35.7% (1140/3195)
Wales (N=123)
48.8% (60/123)
*
*
0.0% (0/123)
21.1% (26/123)
26.0% (32/123)

BRPNF (N=248)
31.9% (79/248)
*
4.8% (12/248)
*
28.6% (71/248)
29.8% (74/248)
CEWT (N=281)
25.6% (72/281)
*
*
3.6% (10/281)
29.9% (84/281)
37.7% (106/281)
EPEN (N=210)
32.4% (68/210)
5.2% (11/210)
*
*
24.8% (52/210)
33.3% (70/210)
EPIC (N=207)
49.8% (103/207)
*
2.9% (6/207)
*
16.4% (34/207)
27.5% (57/207)
NTPEN (N=298)
29.5% (88/298)
*
7.4% (22/298)
*
22.8% (68/298)
38.3% (114/298)
NWEIG (N=222)
23.9% (53/222)
*
*
*
23% (51/222)
49.1% (109/222)
ORENG (N=299)
26.4% (79/299)
2.0% (6/299)
7.4% (22/299)
2.0% (6/299)
32.4% (97/299)
29.8% (89/299)
PENNEC (N=237)
26.2% (62/237)
*
3.8% (9/237)
*
27.8% (66/237)
40.1% (95/237)
SETPEG (N=52)
36.5% (19/52)
*
*
*
11.5% (6/52)
40.4% (21/52)
SWEP (N=112)
45.5% (51/112)
*
*
0.0% (0/112)
23.2% (26/112)
27.7% (31/112)
SWIPE (N=272)
25.7% (70/272)
*
1.8% (5/272)
*
34.2% (93/272)
36.8% (100/272)
SWTPEG (N=186)
32.3% (60/186)
*
10.2% (19/186)
*
30.6% (57/186)
25.3% (47/186)
TEN (N=222)
25.2% (56/222)
*
5.0% (11/222)
*
36.5% (81/222)
28.8% (64/222)
WPNN (N=152)
27.6% (42/152)
*
4.6% (7/152)
*
36.2% (55/152)
29.6% (45/152)
YPEN (N=320)
28.1% (90/320)
*
*
2.8% (9/320)
19.4% (62/320)
46.9% (150/320)
* In accordance with information governance rules, data based on a number less than five has been masked

22

Figure 39: 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.

23.4%
38.4%
1.4%
3.2%
1.2%
32.3%
35.3%
27.2%
1.8%
4.2%
1.5%
29.9%
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
Percentage of children and young people in cohort 1
Diagnostic status
First paediatric assessment
First year of care

23

Figure 40 shows the proportion of children that had uncertain episodes at 12 months and after
the first paediatric assessment. There was a higher proportion of children and young people
with non-epileptic episode(s) at first paediatric assessment (27.2%), compared to Round 1 and
Round 2 (18.0% and 15.0% respectively).
There were a higher proportion of children and young people who had episodes that were
considered uncertain after the first year of care in Round 3 (23.4%), compared to Round 1 and
Round 2 (14.0% and 9.0% respectively).
The proportion of children and young people diagnosed with epilepsy in the 12 months after
their first paediatric assessment is comparable in across Round 1, Round 2 and Round 3 (36.0%,
35.0% and 33.5% respectively).

Figure 40: Diagnosis at first assessment and one year after first assessment in Round 1, Round
2, Round 3.

23.4%
38.4%
4.6%
33.5%
35.3%
27.2%
6.1%
31.4%
9.0%
44.0%
12.0%
35.0%
42.0%
15.0%
10.0%
34.0%
14.0%
45.0%
5.0%
36.0%
36.0%
18.0%
16.0%
30.0%
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
One year after
first paediatric assessment
At first
paediatric assessment
Round 1
Round 2
Round 3

24

Non-epileptic episodes
Table 56 shows a description of the non-epileptic episodes recorded for children in cohort 1.
Table 56: Description of non-epileptic episodes in children in cohort 1 at one year after first
assessment in England and Wales.
Description of non-epileptic episodes

No. of children and young
people in cohort 1
% of total sample
Syncope and Anoxic Seizures
215
6.5%
Behavioural, Psychological and
Psychiatric Disorders
541
16.3%
Sleep Related Conditions
77
2.3%
Paroxysmal Movement Disorders
103
3.1%
Migraine Associated Disorders
22
0.7%
Miscellaneous Events
71
2.1%
Other
535
16.1%

Figure 41: Percentage of children and young people by description of non-epileptic episode
0.7%
2.1%
2.3%
3.1%
6.5%
16.1%
16.3%
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 cohort 1
Description of non-epileptic episodes

25

Initial referral and examination
Referring service to first paediatric assessment
Table 57 shows the service from which a referral was made for a first paediatric assessment for
children and young people who were diagnosed with epilepsy by the end of the first year of
care. In England and Wales, 39.6% (440/ 1112) children and young people were referred by the
emergency department (ED). 36.0% (400/1112) had a referral from the general practitioner (GP).
Figure 42 shows the percentage of referrals received from different services in England and
Wales.
Table 57: 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=1112)
39.6%
(440/1112)
36.0%
(400/1112)
0.1%
(1/1112)
7.8%
(87/1112)
12.2%
(136/1112)
0.2%
(2/1112)
1.4%
(16/1112)
2.7%
(30/1112)
England (N=1051)
39.5%
(415/1051)
35.5%
(373/1051)
0.1%
(1/1051)
8.2%
(86/1051)
12.3%
(129/1051)
0.2%
(2/1051)
1.4%
(15/1051)
2.9%
(30/1051)
Wales (N=61)
41.0%
(25/61)
44.3%
(27/61)
0.0%
(0/61)
1.6%
(1/61)
11.5%
(7/61)
0.0%
(0/61)
1.6%
(1/61)
0.0%
(0/61)

Figure 42: Referring service to first paediatric assessment in England and Wales.

39.6%
36.0%
12.2%
7.8%
2.7%
1.4%
0.2%
0.1%
0%
10%
20%
30%
40%
50%
ED
GP
Inpatient
paediatrics
Outpatient
paediatrics
Other
Neonatal
care
PICU
Health
Visitor
% of children and young people
diagnosed with epilepsy
Reffering service to first paediatric assessment

26

Time since first referral to first paediatric assessment
71.2% (792/1112) of children and young people diagnosed with epilepsy had a valid date entered
describing referral to first paediatric assessment.
14.4% (160/1112) of the children and young people diagnosed with epilepsy had not received
input from a paediatrician with expertise in epilepsies.
11.0% (122/1112) of the children diagnosed with epilepsy had a date of referral to first paediatric
assessment recorded as unknown.
3.4% (38/1112) 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).
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 1, 15.5% (172/1112) 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 58).
Table 58: 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=1112)
15.5% (172/1112)
7.8% (87/1112)
16.3% (181/1112)
9.4% (105/1112)
6.7% (75/1112)
15.5% (172/1112)
England
(N=1051)
16.0% xx-xxxx-xxxx)
7.9% (83/1051)
16.4% (172/1051)
9.0% (95/1051)
6.6% (69/1051)
15.2% (160/1051)
Wales
(N=61)
6.6% (4/61)
6.6% (4/61)
14.8% (9/61)
4.9% (3/61)
9.8% (6/61)
19.7% (12/61)
Only the children with valid date of referral were included in this table. Therefore, the percentages do not
add up to 100%.

27

Age at first paediatric assessment
Figure 43 shows the number of children and young people diagnosed with epilepsy 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.

Figure 43: Numbers of children and young people diagnosed with epilepsy by age in years at
first paediatric assessment and gender in England and Wales. (This figure excludes 2 children
with unknown gender).

47
33
29
30
34
29
27
38
28
35
31
32
26
29
25
23
5
0
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16+
64
37
44
40
36
32
45
32
42
39
32
29
39
41
27
19
11
Female
Male
Age

28

Setting of the first paediatric assessment
In England and Wales, 47.7% (530/1112) of children and young people diagnosed with epilepsy
had their first paediatric assessment in an acute setting.
52.1% (579/1112) had their first paediatric assessments in a non-acute setting, (Table 59).
Figure 44 shows a comparison of the setting of first paediatric assessment in Round 1, Round 2
and Round 3, cohort 1, in England and Wales.
Table 59: Setting of the first paediatric assessment by country.
Country
% Acute
% Non-acute
% Don't know
England and Wales (N=1112)
47.7% (530/1112)
52.1% (579/1112)
0.3% (3/1112)
England (N=1051)
48.0% (504/1051)
51.8% (544/1051)
0.3% (3/1051)
Wales (N=61)
42.6% (26/61)
57.4% (35/61)
0.0% (0/61)

Figure 44: Setting of first paediatric assessment in Round 1, Round 2 and Round 3 in England
and Wales.

43.2%
56.8%
0.0%
44.8%
54.3%
0.9%
47.7%
52.1%
0.3%
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

29

Appropriate first assessment
Performance indicator 4: Appropriate first paediatric
assessment
In Round 3, cohort 1, 61.6% (685/1112) of children and young people diagnosed with epilepsy
had appropriate first paediatric assessment, (Table 60). This indicator ranged from 0% to 100%
and had an interquartile range of 43.0% to 81.0%. In previous rounds, this performance
indicator was applied to the whole cohort, rather than just the epilepsy subgroup, therefore
longitudinal comparison is not meaningful.
Table 60: 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
61.6% (685/1112)
60.1% (632/1051)
86.9% (53/61)
4a
% of children and young people with
evidence of descriptions of episode
Round 3
98.4% (1094/1112)
98.3% (1033/1051)
100% (61/61)
4b
% of children and young people with
evidence of descriptions of age of
child/timing of the first episode
Round 3
81.0% (901/1112)
80.5% (846/1051)
90.2% (55/61)
4c
% of children and young people with
evidence of descriptions of frequency
Round 3
93.5% (1040/1112)
93.1% (979/1051)
100% (61/61)
4d
% of children and young people with
evidence of descriptions of general
examination
Round 3
94.2% (1048/1112)
93.9% (987/1051)
100% (61/61)
4e
% of children and young people with
evidence of descriptions of neurological
examination
Round 3
91.5% (1018/1112)
91.2% (959/1051)
96.7% (59/61)
4f
% of children and young people with
evidence of description of developmental,
learning or schooling progress
Round 3
82.6% (918/1112)
81.5% (857/1051)
100% (61/61)
4g
% of children aged 3 years and over with
evidence of consideration of emotional or
behavioural problems
Round 3
66.0% (734/1112)
64.7% (680/1051)
88.5% (54/61)

30

Figure 45: Appropriate first paediatric assessment by unit, Round 3, cohort 1

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%

31

Description of episodes
Seizure type
Table 62 shows 91.0% (1012/1112) of the children and young people diagnosed with epilepsy in
England and Wales at 1 year, had an epileptic seizure defined. Some children had more than
one seizure type identified.
In the children with epilepsy, there were also episodes where there was uncertainty whether
the seizures were epileptic or not for 14.7% xx-xxxx-xxxx), and 0.9% (10/1112) where there were non-
epileptic seizures identified, (Table 62). 28 children and young people diagnosed with epilepsy
had more than three seizures by year one in England and Wales, (Table 61).
Table 61: Number of seizures in children diagnosed with epilepsy
Country
1 seizure
2 seizures
3 seizures
More than 3
seizures

England and Wales

908

137

39

28

Table 62: Seizure type
Country
% with epileptic
seizures
% with non-epileptic
seizures
% with uncertain
seizures

England and Wales
(N=1112)

91.0% (1012/1112)

0.9% (10/1112)

14.7% xx-xxxx-xxxx)

32

Epileptic seizure type
20 children and young people diagnosed with epilepsy had more than three epileptic seizures
by year one in England and Wales (Table 63).
Table 63: Epileptic seizure type
Country
1 epileptic seizure
2 epileptic seizures
3 epileptic
seizures
More than 3
epileptic
seizures

England and Wales
866
99
27
20

Figure 46 shows that in England and Wales, in their first year of care, children and young
people diagnosed with epilepsy:
•
504 (45.3%) had generalised onset epileptic seizures,
•
370 (33.3%) had focal onset epileptic seizures,
•
126 (11.3%) had unknown onset epileptic seizures,
•
39 (3.5%) had unclassified epileptic seizures.

Figure 46: Percentage of children diagnosed with epilepsy by epileptic seizure type in England
and Wales.
Focal onset 370 (33.3%)
Generalised onset 504 (45.3%)
Unknown onset 126 (11.3%)
Unclassified 39 (3.5%)

33

Focal onset
Table 64 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 174 (15.6%)
children and young people who had impaired awareness focal onset seizures, (Table 64), which
was the most common characteristic where a focal onset seizure was recorded.
Table 64: Percentage of children and young people diagnosed with epilepsy who had focal
onset seizures in England and Wales.
* In accordance with information governance rules, data based on a number less than five has been masked
Focal Onset seizures
Round 3 cohort 1 (N=1112)
Impaired awareness
174 (15.6%)
Focal to bilateral tonic-clonic
91 (8.2%)
Left
78 (7.0%)
Clonic
66 (5.9%)
Right
64 (5.8%)
Tonic
56 (5.0%)
Centro-temporal
51 (4.6%)
Temporal
40 (3.6%)
Behaviour arrest
35 (3.1%)
Automatisms
33 (3.0%)
Frontal
22 (2.0%)
Sensory
18 (1.6%)
Other
12 (1.1%)
Autonomic
11 (1.0%)
Occipital
10 (0.9%)
Atonic
7 (0.6%)
Epileptic spasms
5 (0.4%)
Emotional
5 (0.4%)
Parietal
*
Gelastic
*
Myoclonic
*
Cognitive
*
Hyperkinetic
*

34

Out of the 370 children and young people diagnosed with epilepsy with focal onset seizures,
47% had impaired awareness seizures in England and Wales, (Figure 47).

Figure 47: Percentage of children and young people diagnosed with epilepsy who had focal
onset seizures in England and Wales.
Parietal, Gelastic, Myoclonic, Cognitive, Hyperkinetic are not shown as there were fewer than
five children and young people were recorded for each of these focal onset seizures.

47.0%
24.6%
21.1%
17.8%
17.3%
15.1%
13.8%
10.8%
9.5%
8.9%
5.9%
4.9%
3.2%
3.0%
2.7%
1.9%
1.4%
1.4%
0%
10%
20%
30%
40%
50%
Impaired awareness
Focal to bilateral tonic-clonic
Left
Clonic
Right
Tonic
Centro-temporal
Temporal
Behaviour arrest
Automatisms
Frontal
Sensory
Other
Autonomic
Occipital
Atonic
Epileptic spasms
Emotional
% of children and young people diagnosed with epilepsy that had focal onset seizures
Focal onset seizures

35

Generalised onset
258 (23.2%) of children and young people diagnosed with epilepsy had generalised onset tonic-
clonic seizures in England and Wales, (Table 65).
Table 65: 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)
Tonic-clonic
258 (23.2%)
Typical absence
138 (12.4%)
Atypical absence
46 (4.1%)
Tonic
24 (2.2%)
Epileptic spasms
14 (1.3%)
Atonic
12 (1.1%)
Myoclonic
11 (1.0%)
Absence with eyelid myoclonia
10 (0.9%)
Myoclonic-atonic
9 (0.8%)
Other
8 (0.7%)
Clonic
*
Myoclonic-tonic-clonic
*
* In accordance with information governance rules, data based on a number less than five has been masked

36

Out of the 504 children and young people diagnosed with epilepsy with generalised onset
seizures, 51.2%, had tonic-clonic seizures in England and Wales, (Figure 48).

Figure 48: Percentage of children and young people diagnosed with epilepsy who had
generalised onset seizures in England and Wales. (Clonic and Myoclonic-tonic-clonic are not
shown as there were fewer than five children and young people in each).

Unknown onset
85 (7.6%) of children and young people diagnosed with epilepsy had unknown onset seizures in
England and Wales, (Table 66).
Table 66: 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)
Tonic-clonic
85 (7.6%)
Behaviour arrest
25 (2.2%)
Other
16 (1.4%)
Epileptic spasms
11 (1.0%)
51.2%
27.4%
9.1%
4.2%
2.8%
2.4%
2.2%
2.0%
1.8%
1.6%
0%
10%
20%
30%
40%
50%
60%
Tonic-clonic
Typical absence
Atypical absence
Tonic
Epileptic spasms
Atonic
Myoclonic
Absence with eyelid myoclonia
Myoclonic-atonic
Other
% of children and young people diagnosed with epilepsy that had generalised
onset seizures
Generalised onset seizures

37

Out of the 126 children and young people diagnosed with epilepsy with unknown onset
seizures, 67.5% had tonic-clonic seizures in England and Wales, (Figure 49).

Figure 49: Percentage of children and young people diagnosed with epilepsy that had unknown
onset seizures in England and Wales.

Non-epileptic seizure type
There were 10 children and young people diagnosed with epilepsy who had non-epileptic
seizures. 6 (0.5%) of the children and young people diagnosed with epilepsy had non-epileptic
seizures and behavioural, psychological or psychiatric disorders.

67.5%
19.8%
12.7%
8.7%
0%
10%
20%
30%
40%
50%
60%
70%
Tonic-clonic
Behaviour arrest
Other
Epileptic spasms
% of children and young people diagnosed with epilepsy who had
unknown onset seizures
Unknown onset seizures

38

Electroclinical syndrome
Figure 50 shows the electroclinical syndrome classification. Eight children had more than one
International League Against Epilepsy (ILAE) classification. ILAE classifications are shown in
Figure 50, where the electroclinical syndrome was recorded for at least one child or young
person.

Figure 50: Number of children and young people diagnosed with epilepsy by electroclinical
syndrome in England and Wales.
5
6
6
10
10
15
16
31
33
42
44
52
68
80
81
95
0
20
40
60
80
100
Epilepsy with myoclonic absences
Frontal lobe epilepsy
Eyelid myoclonia with absences
Panayiotopoulos syndrome
Occipital lobe epilepsy
West syndrome
Idiopathic focal epilepsy of childhood
Epilepsy with generalized tonic-clonic
seizures only
Temporal lobe epilepsy
Juvenile absence epilepsy (JAE)
Juvenile myoclonic epilepsy (JME)
'Unclassified syndrome'
No epilepsy syndrome stated
Childhood absence epilepsy (CAE)
Childhood epilepsy with centrotemporal
spikes (BECTS)
Other
Percentage of children and young people diagnosed with epilepsy
Electroclinical syndrome classification

39

Certain categories are not shown in Figure 50 as there were fewer than five children and young
people. These are: Epilepsy with myoclonic astatic seizures, Benign familial neonatal seizures,
Early myoclonic encephalopathy, Ohtahara syndrome, Benign infantile seizure, Late onset
childhood occipital epilepsy, Lennox-Gastaut syndrome, Parietal lobe epilepsy, Dravet
syndrome, Visual sensitive epilepsies, Childhood epilepsy with occipital paroxysms,
Generalized Epilepsies with Febrile seizures and (Benign) Myoclonic epilepsy in infancy.

Performance indicator 5: Seizure formulation

In Round 3, cohort 1, 88.0% (979/1112) of children and young people diagnosed with epilepsy
had an appropriate seizure classification in the first year of care, (Table 67). Appropriate
seizure formulation was defined as having selected an International League Against Epilepsy
(ILAE) seizure classification (all ILAE seizure types or ‘unclassified’). At a Health Board and Trust
level, this indicator ranged from 25% to 100% and had an interquartile range of 83% to 100%.

Table 67: Seizure formulation.
Seizure Formulation
Audit
Round
England and
Wales
England
Wales
% of children and
young people with
epilepsy with
appropriate seizure
classification at first
year of care
Round 1
86.9% (1318/1516)
86.8% (1235/1423)
89.2% (83/93)
Round 2
94.9% (1040/1096)
95.5% (973/1019)
94.4% (67/71)
Round 3
88.0% (979/1112)
87.4% (919/1051)
98.4% (60/61)

40

Figure 51: Seizure formulation, by Health Board and Trust, Round 3, cohort 1.
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.

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

41

Seizure cause
31 (2.8%) children and young people in England and Wales diagnosed with epilepsy had a
genetic seizure cause, whilst 84 (7.6%) had a structural seizure cause, (Table 68). The cause of
seizure in 221 (19.9%) children and young people diagnosed with epilepsy was unknown.
Table 68: Percentage of children and young people diagnosed with epilepsy by seizure cause
in England and Wales.
Seizure Cause
Round 3 cohort 1 (N=1112)
Genetic
31 (2.8%)
Immune
*
Infectious
10 (0.9%)
Metabolic
*
Not known
221 (19.9%)
Structural
84 (7.6%)
* In accordance with information governance rules, data based on a number less than five has been masked
Of the 31 children with genetic cause of their epilepsy, 12 (30.7%) had chromosomal
abnormality, 18 (58.1%) had genetic abnormality and fewer than five had Rett Syndrome. Out of
the 84 children and young people diagnosed with a structural seizure cause of their epilepsy,
29.8% had a vascular cause (e.g. arterial ischaemic stroke), (Figure 52).
Figure 52: Percentage of children and young people diagnosed with epilepsy who had
structural seizure cause.
2.4%
2.4%
4.8%
4.8%
7.1%
9.5%
11.9%
27.4%
29.8%
0%
10%
20%
30%
Sturge Weber
Traumatic brain injury
Low grade tumour
Tumour (other)
Tuberous Sclerosis
Focal cortical dysplasia
Not required
Malformations of Cortical Development
Vascular
% of children and young people diagnosed with epilepsy with structural seizure cause
Structural seizure cause

42

Convulsive seizures
Convulsive epileptic seizures
63% (701/1112) of children and young people diagnosed with epilepsy had convulsive seizures,
whilst 37% (411/1112) did not have convulsive seizures in England and Wales, (Table 69/Figure
53). The proportion of children and young people with convulsive seizures in England was
similar to Wales.
Table 69: Convulsive epileptic seizures in children and young people diagnosed with epilepsy
by country.
Country
% with convulsive seizures
% with no convulsive
seizures
England & Wales (N=1112)
63.0% (701/1112)
37.0% (411/1112)
England (N=1051)
63.0% (662/1051)
37.0% (389/1051)
Wales (N=61)
63.9% (39/61)
36.1% (22/61)

Figure 53: Percentage of children and young people diagnosed with epilepsy with/with no
convulsive epileptic seizures in England and Wales.

63.0%
37.0%
with convulsive seizures
with no convulsive seizures

43

Prolonged generalised convulsive seizures
Table 70 shows that 16.3% (181/1112) of the children and young people diagnosed with epilepsy,
experienced prolonged generalised convulsive seizures in year one. Prolonged seizures are
those with a duration of more than five minutes or successive seizures continuing for more
than five minutes.
79.8% (887/1112) of children and young people with epilepsy did not experience prolonged
generalised convulsive seizures. There was uncertainty whether the seizures were prolonged
generalised convulsive seizures or not for 4.0% (44/1112) of children and young people.
Figure 54 shows the percentage of children and young people diagnosed with epilepsy by
prolonged generalised convulsive epileptic seizures in England and Wales.
Table 70: Prolonged generalised convulsive epileptic seizures in children and young people
diagnosed with epilepsy.
Country
% yes
% no
% uncertain
England and Wales
(N=1112)
16.3% (181/1112)
79.8% (887/1112)
4.0% (44/1112)

Figure 54: Percentage of children and young people diagnosed with epilepsy by prolonged
generalised convulsive epileptic seizures in England and Wales.

16.3%
79.8%
4.0%
yes
no
uncertain

44

Prolonged focal convulsive seizures
Table 71 shows 10.0% (111/1112) 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
5.8% (65/1112) of children and young people. Figure 55 shows the percentage of children and
young people diagnosed with epilepsy by prolonged generalised convulsive epileptic seizures
in England and Wales.
Table 71: Prolonged focal convulsive epileptic seizures in children and young people diagnosed
with epilepsy by country.
Country
% yes
% no
% uncertain
England and Wales
(N=1112)
10.0% (111/1112)
84.2% (936/1112)
5.8% (65/1112)

Figure 55: Percentage of children and young people diagnosed with epilepsy by prolonged
focal convulsive epileptic seizures in England and Wales.
10.0%
84.2%
5.8%
yes
no
uncertain

45

Family history of epilepsy
26.8% (298/1112) of children and young people in England and Wales diagnosed with epilepsy
had a family history of epilepsy. 73.2% (814/1112) did not have any family history of epilepsy,
(Table 72).
Figure 56 shows the percentage of children and young people diagnosed with epilepsy by
family history of epilepsy in England and Wales.
Table 72: 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=1112)
26.8% (298/1112)
73.2% (814/1112)

England (N=1051)
26.4% (277/1051)
73.6% (774/1051)

Wales (N=61)
34.4% (21/61)
65.6% (40/61)

Figure 56: Percentage of children and young people diagnosed with epilepsy with/with no
family history of epilepsy in England and Wales.
26.8%
73.2%
yes
no

46

Neurodisability or neurodevelopmental problems
24.4% (271/1112) of children and young people diagnosed with epilepsy had a neurodisability/neurodevelopmental problem described by
one year in England and Wales in Round 3, cohort 1. 6.4% (71/1112) had autistic spectrum disorder and 6.3% (70/1112) had an intellectual
disability/global development delay/learning disability as shown in Table 73. Figure 57 shows a breakdown of the neurodisability or
neurodevelopmental problems among children diagnosed with epilepsy in Round 3, cohort 1.

47

Table 73: Neurodisability/neurodevelopmental problems among children diagnosed with epilepsy in Round 3.
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 &Wales
(N=1112)
6.4% (71/1112)
3.6% (40/1112)
*
1.9% (21/1112)
1.7% (19/1112)
6.3% (70/1112)
*
0.7% (8/1112)
1.6% (18/1112)
3.4% (38/1112)
England (N=1051)
6.7% (70/1051)
3.6% (38/1051)
*
2.0% (21/1051)
1.8% (19/1051)
6.2% (65/1051)
*
0.7% (7/1051)
1.5% (16/1051)
3.5% (37/1051)
Wales (N=61)
*
*
0.0% (0/61)
0.0% (0/61)
0.0% (0/61)
8.2% (5/61)
*
*
*
*

BRPNF (N=92)
5.4% (5/92)
*
0.0% (0/92)
0.0% (0/92)
*
7.6% (7/92)
0.0% (0/92)
*
*
*
CEWT (N=94)
5.3% (5/94)
*
*
*
*
6.4% (6/94)
0.0% (0/94)
*
*
*
EPEN (N=75)
6.7% (5/75)
0.0% (0/75)
0.0% (0/75)
*
0.0% (0/75)
*
0.0% (0/75)
0.0% (0/75)
*
*
EPIC (N=112)
4.5% (5/112)
*
*
*
*
*
*
*
4.5% (5/112)
8.9% (10/112)
NTPEN (N=99)
15.2% (15/99)
5.1% (5/99)
0.0% (0/99)
*
*
8.1% (8/99)
0.0% (0/99)
0.0% (0/99)
*
*
NWEIG (N=67)
*
*
0.0% (0/67)
0.0% (0/67)
*
14.9% (10/67)
0.0% (0/67)
0.0% (0/67)
*
0.0% (0/67)
ORENG (N=91)
*
*
*
0.0% (0/91)
*
5.5% (5/91)
0.0% (0/91)
0.0% (0/91)
*
*
PENNEC (N=65)
10.8% (7/65)
7.7% (5/65)
0.0% (0/65)
*
0.0% (0/65)
*
0.0% (0/65)
0.0% (0/65)
*
*
SETPEG (N=23)
*
0.0% (0/23)
0.0% (0/23)
0.0% (0/23)
0.0% (0/23)
*
0.0% (0/23)
0.0% (0/23)
0.0% (0/23)
0.0% (0/23)
SWEP (N=51)
*
*
0.0% (0/51)
0.0% (0/51)
0.0% (0/51)
9.8% (5/51)
*
*
0.0% (0/51)
*
SWIPE (N=72)
6.9% (5/72)
6.9% (5/72)
0.0% (0/72)
6.9% (5/72)
*
*
*
0.0% (0/72)
*
*
SWTPEG (N=64)
10.9% (7/64)
9.4% (6/64)
*
*
*
10.9% (7/64)
0.0% (0/64)
*
*
*
TEN (N=54)
*
*
0.0% (0/54)
0.0% (0/54)
*
0.0% (0/54)
0.0% (0/54)
0.0% (0/54)
0.0% (0/54)
*
WPNN (N=42)
*
0.0% (0/42)
0.0% (0/42)
0.0% (0/42)
0.0% (0/42)
*
0.0% (0/42)
*
*
*
YPEN (N=111)
4.5% (5/111)
*
*
*
0.0% (0/111)
*
0.0% (0/111)
0.0% (0/111)
*
*
* In accordance with information governance rules, data based on a number less than five has been masked

48

Figure 57: Neurodisability/neurodevelopmental problems among children diagnosed
with epilepsy in cohort 1.
Table 74 shows, out of 70 children and young people diagnosed with epilepsy with
intellectual disability/global development delay/learning disability, 54.3% (38/70) had
moderate severity in England and wales.
Table 74: 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.

6.4%
6.3%
3.6%
3.4%
1.9%
1.7%
1.6%
0.7%
0.5%
0.4%
0%
5%
10%
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
Neurodisability/ neurodevelopmental problems
Severity of neurodevelopmental
problems
% of children and young people with intellectual
disability
Mild
22.9% (16/70)
Moderate
54.3% (38/70)
Severe or Profound
22.8% (16/70)

49

Mental health conditions
4.6% (51/1112) of children and young people diagnosed with epilepsy in cohort 1 had an
identified mental health condition(s) by one year in England and Wales. 0.5% (6/112) had
a mood disorder, 0.7% (8/112) had an anxiety disorder and 2.3% (26/1112) had other
mental health concerns.
6.1% (43/701) of children and young people between the age of 5-15 years and diagnosed
with epilepsy in cohort 1, had an identified mental health condition(s) by one year in
England and Wales. 23.3% (10/43) of these had formal development assessment, 20.9%
(9/43) had formal cognitive assessment by one year, (Table 76).
There were 11 children and young people with emotional/behavioural problems, which
included conduct disorders and Oppositional Defiant Disorder (ODD).
Table 75: 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
% of children and young people ages
5-15 with mental health conditions
Mood disorder
0.5% (6/1112)
0.7% (5/701)
Anxiety disorder
0.7% (8/1112)
1.1% (8/701)
Emotional/behavioural
1.0% (11/1112)
1.4% (10/701)
Other*
2.3% (26/1112)
2.8% (20/701)
*Includes self-harm as there were fewer than 5 children and young people

50

Figure 58: Number of children diagnosed with epilepsy by mental health condition in
England and Wales.

Table 76: Percentage of children and young people between the age of 5-15 years and
diagnosed with a mental health condition that had ongoing investigations in England
and Wales.
Mental health condition that requires ongoing
investigations
% of children and young people with mental health
conditions
Formal developmental assessment

23.3% (10/43)

Formal cognitive assessment

20.9% (9/43)

26
11
8
6
0
5
10
15
20
25
30
Other
Emotional/ behavioural
Anxiety disorder
Mood disorder
Number of children and young people diagnosed with epilepsy
Mental health problem

51

Investigations
Time since first request for EEG
•
0.4% (4/1112) of the children and young people diagnosed with epilepsy did not
have an EEG.
•
3.1% (35/1112) had an invalid EEG request date/EEG obtained date (date of EEG
request is after the date EEG was obtained).
•
96.5% (1073/1112) children and young people diagnosed with epilepsy had a valid
EEG request date.
•
94.2% (1047/1112) 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 1, 56.2% (625/1112) of children and young people diagnosed with
epilepsy, obtained their EEG within four weeks of request in England and Wales, (Table
77).
Table 77: 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 &Wales
(N=1112)
56.2% (625/1112)
26.6% (296/1112)
5.2% (58/1112)
2.3% (26/1112)
3.8% (42/1112)
England (N=1051)
57% (599/1051)
26.1% (274/1051)
4.7% (49/1051)
2.3% (24/1051)
4.0% (42/1051)
Wales (N=61)
42.6% (26/61)
36.1% (22/61)
14.8% (9/61)
3.3% (2/61)
0.0% (0/61)
The four children and young people who did not have an EEG and those with invalid dates are not included in the analysis on
this table, hence the percentages do not add up to 100%.

Table 78 shows 97.5% (1084/1112) of children and young people diagnosed with epilepsy
obtained the first EEG in year one. 59.1% (657/1112) obtained MRI brain, 56.4% (627/1112)
obtained 12 lead ECG and 13.1% (146/1112) obtained a CT head scan in year one, in England
and Wales.

52

Figure 59 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.
Table 78: 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 &Wales
(N=1112)
97.5% (1084/1112)
56.4% (627/1112)
13.1% (146/1112)
59.1% (657/1112)
England (N=1051)
97.3% (1023/1051)
57.8% (607/1051)
13.6% (143/1051)
59.7% (627/1051)
Wales (N=61)
100% (61/61)
32.8% (20/61)
4.9% (3/61)
49.2% (30/61)

BRPNF (N=92)
97.8% (90/92)
62% (57/92)
9.8% (9/92)
56.5% (52/92)
CEWT (N=94)
100% (94/94)
68.1% (64/94)
8.5% (8/94)
61.7% (58/94)
EPEN (N=75)
94.7% (71/75)
45.3% (34/75)
10.7% (8/75)
53.3% (40/75)
EPIC (N=112)
100% (112/112)
46.4% (52/112)
11.6% (13/112)
59.8% (67/112)
NTPEN (N=99)
97.0% (96/99)
58.6% (58/99)
9.1% (9/99)
64.6% (64/99)
NWEIG (N=67)
100% (67/67)
55.2% (37/67)
19.4% (13/67)
55.2% (37/67)
ORENG (N=91)
93.4% (85/91)
51.6% (47/91)
20.9% (19/91)
53.8% (49/91)
PENNEC (N=65)
95.4% (62/65)
52.3% (34/65)
15.4% (10/65)
55.4% (36/65)
SETPEG (N=23)
100% (23/23)
82.6% (19/23)
17.4% (4/23)
73.9% (17/23)
SWEP (N=51)
100% (51/51)
33.3% (17/51)
5.9% (3/51)
49.0% (25/51)
SWIPE (N=72)
98.6% (71/72)
48.6% (35/72)
8.3% (6/72)
61.1% (44/72)
SWTPEG (N=64)
96.9% (62/64)
81.3% (52/64)
17.2% (11/64)
67.2% (43/64)
TEN (N=54)
98.1% (53/54)
59.3% (32/54)
11.1% (6/54)
38.9% (21/54)
WPNN (N=42)
97.6% (41/42)
42.9% (18/42)
14.3% (6/42)
69.0% (29/42)
YPEN (N=111)
95.5% (106/111)
64% (71/111)
18.9% (21/111)
67.6% (75/111)

53

Figure 59: 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.

97.5%
56.4%
13.1%
59.1%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
First EEG
12 lead ECG
CT head scan
MRI brain
% of children and young people diagnosed with
epilepsy
Investigations

54

Performance Indicator 6: ECG
In Round 3 cohort 1, 67.6% (474/701) of children and young people diagnosed with
epilepsy and had convulsive seizures, obtained a 12 lead ECG by the first year in England
and Wales, (Table 79). This indicator ranged from 0% to 100% and the inter-quartile range
was 46.0% to 100% at a Health Board or Trust level. In Round 3, this performance
indicator was just applied to children with epilepsy and convulsive seizures, rather than
all children with convulsive seizures. This means that longitudinal comparison is not
meaningful and therefore has not been reported.
Table 79: Percentage of children and young people with convulsive seizures and
epilepsy, with an ECG by the first year, Round 3, cohort 1.
Performance Indicator: 6
England and
Wales
England
Wales

ECG
% of children and young people with
convulsive seizures and epilepsy,
with an ECG by the first year
67.6% (474/701)
69.5% (460/662)
35.9% (14/39)

55

Figure 60: Percentage of children and young people with convulsive seizures and
epilepsy, with an ECG at first year by Health Board and Trust, Round 3, cohort 1.
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%

56

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 1, 68.6% (317/462) children and young people diagnosed with epilepsy
and with defined indications for an MRI, who had MRI by their first year of care in
England and Wales, (Table 80). At a Health Board or Trust level in Round 3, this indicator
ranged from 0% to 100%, the inter-quartile range was 50% to 100%.
Table 80: Percentage of children and young people with defined indications for an MRI,
who had 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 first
year
Round 1
63.5% (602/948)
64.3% (578/899)
49.0% (24/49)
Round 2
72.2% (481/666)
72.7% (458/630)
63.9% (23/36)
Round 3
68.6% (317/462)
70.4% (307/436)
38.5% (10/26)

57

Figure 61: Percentage of children and young people with defined indications for an MRI,
who had MRI by first year by Health Board and Trust, Round 3, cohort 1.
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%

58

Treatment
Anti-epileptic drug (AED)
In Round 3, cohort 1, 879 children and young people were prescribed one or more anti-
epileptic drugs (AEDs) during their first 12 months of care. 72 children and young people
had begun three or more AEDs during their first 12 months of care.
Table 81 below shows the diagnosis of children and young people together with the
number of different AEDs prescribed over their first year of care.
Table 81: Diagnosis and AEDs.

Round 1
Round 2
Round 3

Diagnoses
1 or more
AED
N=1538
3 or more
AEDs
N=135
1 or more
AED
N=1059
3 or more
AEDs
N=84
1 or more
AED
N=879
3 or more
AEDs
N=72
Epilepsy
1406 (91.0%)
129 (96.0%)
976 (92.0%)
82 (98.0%)
856 (97.4%)
71 (98.6%)
Single
epileptic
seizure (or
cluster)
68 (4.0%)
6 (4.0%)
9 (1.0%)
0 (0.0%)
10 (1.1%)
0 (0.0%)
Non-epileptic
episode (s)
44 (3.0%)
0 (0.0%)
20 (2.0%)
1 (1.0%)
7 (0.8%)
1 (1.4%)
Uncertain
episodes
20 (1.0%)
0 (0.0%)
55 (5.0%)
1 (1.0%)
6 (0.7%)
0 (0.0%)

Figure 62 shows the frequency of AEDs use among children diagnosed with epilepsy.
Carbamazepine, sodium valproate and levetiracetam were the most commonly used
AEDs for children diagnosed with epilepsy in Round 3, cohort 1.

59

Figure 62: Frequency by AED type in England and Wales, Round 3, cohort 1.

Sodium valproate use
Figure 63 below shows the number of children and young people diagnosed with
epilepsy on sodium valproate by gender in England and Wales, Round 3 cohort 1. There
were more boys on sodium valproate than girls across all ages.
1
1
2
2
4
5
6
8
11
14
17
25
36
41
82
158
200
305
330
0
50
100
150
200
250
300
350
AED frequency in children diagnosed with epilepsy
AED type

60

Figure 63: Number of children and young people diagnosed with epilepsy on sodium
valproate by gender in England and Wales, Round 3 cohort 1.
*Age groups with fewer than five children and young people are not shown.

17
10
19
17
18
13
24
8
13
9
13
11
18
21
15
11
*
*
13
8
8
5
8
9
*
5
*
*
0
0
*
*
0
0
0
0
0
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
Age in years
Female
Male

61

Performance indicator 9 and 9b: Sodium Valproate
In Round 3, cohort 1, 39.7% (25/63) of all females diagnosed with epilepsy and on sodium
valproate treatment, had evidence of previous discussion of risk regarding birth defects
and/or neurodevelopmental outcomes, (Table 82). This indicator ranged from 0% to 100%
and had an interquartile range of 0% to 100% at a Health Board and Trust level.
There were fewer than five females aged nine years and above, who were diagnosed
with epilepsy and receiving treatment with sodium valproate. All (100%) of them had
evidence of previous discussion of risk regarding birth defects and/or
neurodevelopmental outcomes.
Table 82: 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
100% (>5)
9b

% of all females currently on valproate
treatment with evidence of discussion
of foetal risk
Round 3
39.7% (25/63)

62

Figure 64: Percentage of females currently on sodium valproate treatment with
evidence of discussion of foetal risk by Health Board and Trust, Round 3, cohort 1.
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
19.6% (218/1112) of the children and young people diagnosed with epilepsy had rescue
medication prescription in England and Wales, (Figure 65). 80.4% (894/1112) of children
and young people did not have rescue medication prescribed.
Figure 66 shows the percentage of children and young people diagnosed with epilepsy
that had rescue medication prescribed by country and network.
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%

63

Figure 65: Percentage of children and young people diagnosed with epilepsy that
had/did not have rescue medication prescribed in England and Wales.

Figure 66: Percentage of children and young people diagnosed with epilepsy that had
rescue medication prescribed by country and network.
19.6%
80.4%
rescue medication prescribed
rescue medication not prescribed
18.0%
26.2%
18.5%
32.8%
12.5%
25.5%
21.7%
23.1%
26.4%
16.4%
36.4%
10.7%
20.0%
9.6%
7.6%
23.0%
19.4%
19.6%
0%
5%
10%
15%
20%
25%
30%
35%
40%
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 had a rescue
medication presribed
Country/network

64

Children’s Epilepsy Surgery Service (CESS) referral criteria
8.0% (89/1112) of the children and young people diagnosed with epilepsy, met one or
more of the CESS referral criteria in England and Wales, (Figure 66). 92.0% (1023/1112) of
children and young people did not meet any CESS referral criteria.

Figure 67: Percentage of children and young people diagnosed with epilepsy that
met/did not meet any CESS referral criteria in England and Wales.

8.0%
92.0%
met CESS referral criteria
not met any CESS referral criteria

65

Figure 68 shows the percentage of children and young people diagnosed with epilepsy
that met any CESS referral criteria by country and network. In the paediatric network
areas, this varied between 0% and 16.0% of children and young people meeting any CESS
referral criteria.

Figure 68: Percentage of children and young people diagnosed with epilepsy that met
any CESS referral criteria by country and network.

7.2%
7.1%
7.4%
4.7%
5.6%
15.7%
0.0%
7.7%
3.3%
6.0%
11.1%
14.3%
8.0%
8.5%
6.5%
18.0%
7.4%
8.0%
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

66

Performance indicator 3b: Epilepsy surgery referral
In Round 3, cohort 1, 30.0% (27/89) of the children and young people who met CESS
referral criteria had epilepsy surgery referral by one year, (Table 83). Table 84 shows the
breakdown of this performance indicator by network. This is a new indicator for Round 3
and therefore longitudinal comparison will not be possible.
Table 83: Epilepsy surgery referral.
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
30.0%
(27/89)
33.0% (26/78)
9.1% (1/11)

Table 84: 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
England and Wales
30% (27/89)
England
33% (26/78)
Wales
9.1% (1/11)

BRPNF
83.3% (5/6)
CEWT
12.5% (1/8)
EPEN
33.3% (2/6)
EPIC
25.0% (4/16)
NTPEN
36.4% (4/11)
NWEIG
25.0% (1/4)
ORENG
0.0% (0/3)
PENNEC
0.0% (0/5)
SETPEG
(0/0)
SWEP
12.5% (1/8)
SWIPE
50.0% (2/4)
SWTPEG
33.3% (1/3)
TEN
75.0% (3/4)
WPNN
33.3% (1/3)
YPEN
25.0% (2/8)

67

4.0% (6/150) of children and young people meeting the defined criteria for paediatric
neurology referral, did not have a paediatric neurologist input date.
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.
52.8% (76/144) 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 85).

Table 85: 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
52.8% (76/144)
14.6% (21/144)
12.5% (18/144)
6.9% (10/144)
11.8% (17/144)
England
52.9% (72/136)
14.7% (20/136)
12.5% (17/136)
6.6% (9/136)
11.8% (16/136)
Wales
50.0% (4/8)
12.5% (1/8)
12.5% (1/8)
12.5% (1/8)
12.5% (1/8)
Only the children with a paediatric neurologist input date were included in this analysis, hence the percentages on the table
may not add up to 100%.

68

Care planning
Appropriate care planning
Performance indicator 10: Comprehensive Care Planning agreement
In Round 3, cohort 1, 62.4% (694/1112) of children and young people diagnosed with
epilepsy had evidence of a comprehensive care plan that had been updated where
necessary and was agreed between the patient, their family and/or carers and primary
and secondary care providers, for the first year of care (Table 86). This indicator ranged
from 0% to 100% and had an interquartile range of 43% to 81% at a Health Board or Trust
level.
Table 86: Comprehensive Care Planning agreement

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
62.4% (694/1112)
63.5% (667/1051)
44.3% (27/61)
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
88.3% (982/1112)
88.8%
(933/1051)
80.3% (49/61)
10b
% of children and young people
with epilepsy after 12 months
where there was evidence of
agreement between the person,
their family and/or carers as
appropriate
Round 3
74.2% (825/1112)
74.8% (786/1051)
63.9% (39/61)
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
69.6% (774/1112)
71.0% (746/1051)
45.9% (28/61)

69

.

Figure 69: Comprehensive Care Planning agreement, Round 3
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%

70

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 1, 70.1% (779/1112) of children and young people diagnosed with
epilepsy had documented evidence of communication regarding relevant core elements
of care planning, (Table 87). This indicator ranged from 0% to 100% and had an
interquartile range of 50% to 100% 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.
88.5% (193/218) of children and young people diagnosed with epilepsy and on rescue
medication, had a parental prolonged seizure care plan in England and Wales, (Table 87).
Table 87: Comprehensive Care Planning content.
Performance indicator: Comprehensive
Care Planning content
Audit
Round
England and
Wales
England
Wales
11
% of children diagnosed with epilepsy
with documented evidence of
communication regarding relevant
core elements of care planning
Round 3
70.1% (779/1112)
71.7% (754/1051)
41.0% (25/61)
11a
% of children diagnosed with epilepsy
with parental prolonged seizures care
plan
Round 3
88.5% (193/218)
89.2% (182/204)
78.6% (11/14)
11b
% of children diagnosed with epilepsy
with evidence of discussion regarding
water safety
Round 3
79.7% (886/1112)
81.4% (856/1051)
49.2% (30/61)
11c
% of children diagnosed with epilepsy
with evidence of discussion regarding
first aid
Round 3
84.8% (943/1112)
86.2% (906/1051)
60.7% (37/61)
11d
% of children diagnosed with epilepsy
with evidence of discussion regarding
general participation and risk
Round 3
80% (890/1112)
81.1% (852/1051)
62.3% (38/61)
11e
% of children diagnosed with epilepsy
evidence of discussion of been given
service contact details
Round 3
90.7% (1009/1112)
91.3% (960/1051)
80.3% (49/61)

71

Figure 70: Comprehensive Care Planning content by Health Board and Trust, Round 3.
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%

72

Performance indicator 12: School Individual Healthcare Plan
In Round 3 cohort 1, 32.2% (231/717) of children and young people diagnosed with
epilepsy and aged five years and above had evidence of a school individual healthcare
plan by one year (Table 88). This indicator ranged from 0% to 100% and had an
interquartile range of 0% to 63% at Health Board or Trust level.
Table 88: School Individual Healthcare Plan
Performance indicator 12:
Audit
Round
England and
Wales
England
Wales
School
Individual
Healthcare
Plan
% of children and young people
with epilepsy aged 5years and
above with evidence of a school
individual healthcare plan by 1 year
after first paediatric assessment.
Round 3
32.2% (231/717)
32.4% (219/676)
29.3% (12/41)

Figure 71: School Individual Healthcare Plan, by Health Board or Trust, Round 3, cohort 1
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%

73

42.6%
57.4%
with SUDEP information
without SUDEP information
Sudden Unexpected Death in Epilepsy (SUDEP)
42.6% (474/1112) of children and young people diagnosed with epilepsy had evidence of
information on SUDEP in England and Wales (Figure 72). 57.4% (638/1112) of children and
young people did not have SUDEP information provided. Figure 73 shows the percentage
of children and young people with evidence of SUDEP information by country and
network.

Figure 72: Percentage of children and young people diagnosed with Epilepsy
with/without evidence of SUDEP information in England and Wales.
Figure 73: Percentage of children and young people diagnosed with evidence of SUDEP
information by country and network.
80.2%
59.5%
50.0%
54.7%
44.4%
9.8%
39.1%
30.8%
44.0%
58.2%
41.4%
25.9%
28.0%
20.2%
46.7%
9.8%
44.5%
42.6%
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

74

Professionals and services involved in care
Professionals
Table 89 shows that 82.3% (915/1112) of the children and young people diagnosed with
epilepsy had input from a paediatrician with expertise in epilepsies in England and Wales
in their first year of care. 71.8% (798/1112) of children and young people diagnosed with
epilepsy had an input from an epilepsy specialist nurse (ESN).
Figure 74 shows the percentage of children and young people diagnosed with epilepsy
with an input from various professionals in England and Wales.
Table 89: 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
82.3% (915/1112)
81.9% (861/1051)
88.5% (54/61)
% ESN
71.8% (798/1112)
73.2% (769/1051)
47.5% (29/61)
% Paediatric neurologist
22.4% (249/1112)
22.1% (232/1051)
27.9% (17/61)
% CESS
1.6% (18/1112)
1.7% (18/1051)
0.0% (0/61)
% Ketogenic dietician
0.6% (7/1112)
0.7% (7/1051)
0.0% (0/61)
% VNS service
0.0% (0/1112)
0.0% (0/1051)
0.0% (0/61)
% Genetic service
4.8% (53/1112)
4.9% (52/1051)
1.6% (1/61)
% Clinical psychologist
1.2% (13/1112)
1.2% (13/1051)
0.0% (0/61)
% Educational psychologist
0.6% (7/1112)
0.7% (7/1051)
0.0% (0/61)
% Psychiatrist
0.6% (7/1112)
0.7% (7/1051)
0.0% (0/61)
% Neuropsychologist
0.5% (6/1112)
0.6% (6/1051)
0.0% (0/61)
% Counselling service
0.4% (4/1112)
0.4% (4/1051)
0.0% (0/61)
% Other mental health
professional
0.7% (8/1112)
0.8% (8/1051)
0.0% (0/61)
% Youth worker
0.0% (0/1112)
0.0% (0/1051)
0.0% (0/61)
% Other
1.5% (17/1112)
1.5% (16/1051)
1.6% (1/61)

75

Figure 74: Percentage of children and young people diagnosed with epilepsy with input
from various professionals in England and Wales.

0.0%
0.0%
0.4%
0.5%
0.6%
0.6%
0.6%
0.7%
1.2%
1.5%
1.6%
4.8%
22.4%
71.8%
82.3%
0%
20%
40%
60%
80%
VNS service
Youth worker
Counselling service
Neuropyschologist
Ketogenic dietician
Educational psychologist
Psychiatrist
Other mental health professional
Clinical psychologist
Other
CESS
Genetic service
Paediatric neurologist
ESN
Consultant Paediatrician with expertise in
epilepsies
% children and young people diagnosed with epilepsy
Professionals and services involved in care

76

Performance indicator 1: Paediatrician with expertise in
epilepsies
In Round 3 cohort 1, 87.9% (977/1112) of children and young people diagnosed with
epilepsy, had input from a paediatrician with expertise in epilepsies in their first year of
care, (Table 90). This is slightly higher than in Round 2, 86.1% (938/1090).
This indicator ranged from 20% to 100% and had an interquartile range of 84% to 100% at
a Health Board and Trust level.
Table 90: Paediatrician with expertise in epilepsies.
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
78.0% (1183/1516)
77.7% (1106/1423)
82.8% (77/93)
Round 2
86.1% (938/1090)
86.1% (877/1019)
85.9% (61/71)
Round 3
87.9% (977/1112)
87.9% (924/1051)
86.9% (53/61)

77

Figure 75: Paediatrician with expertise in epilepsies by Health Board and Trust, Round 3,
cohort 1.
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%

78

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 1, 69.0% (767/1112) of children and young people diagnosed with
epilepsy, had input from an epilepsy specialist nurse (ESN) by one year, (Table 91). This is
proportion is higher than Round 2. This indicator ranged from 0% to 100% and had an
interquartile range of 58.0% to 100% at a Health Board or Trust level.
Table 91: Epilepsy specialist nurse
Performance indicator: 2
Audit
Round
England and
Wales
England
Wales
Epilepsy
specialist
nurse
% of children and
young people with
epilepsy, with input
by an epilepsy
specialist nurse
within the first year
of care
Round 1
43.4% (658/1516)
41.6% (592/1423)
71.0% (66/93)
Round 2
55.5% (605/1090)
54.5% (555/1019)
70.4% (50/71)
Round 3
69.0% (767/1112)
70.2% (738/1051)
47.5% (29/61)

Figure 76: Input from an ESN by Health Board and Trust, Round 3, cohort 1.
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%

79

Performance indicator 3: Tertiary input
In Round 3 cohort 1, 59.3% (150/253) of children and young people who met paediatric
neurology referral criteria had paediatric neurologist input or Children’s Epilepsy Surgical
service (CESS) referral by one year (Table 92). This is slightly higher than Round 2. This
indicator ranged from 0% to 100% and had an interquartile range of 33% to 100% at Health
Board or Trust level.
Table 92: Tertiary input.
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
59.1% (205/347)
59.2% (200/338)
55.6% (5/9)
Round 2
54.1% (119/220)
53.7% (115/214)
66.7% (4/6)
Round 3
59.3% (150/253)
59.2% (142/240)
61.5% (8/13)

Figure 77: Tertiary input by Health Board and Trust, Round 3, cohort 1.
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%

80

Ongoing investigations
Table 93 shows that in the first year of care for children and young people who were
diagnosed with epilepsy in England and Wales:
•
20.2% (225/1112) had a formal development assessment,
•
7.0% (78/1112) had formal cognitive assessment.
Figure 78 shows the percentage of children and young people that had relevant ongoing
assessment in England and Wales.
Table 93: 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 &Wales (N=1112)
20.2% (225/1112)
7.0% (78/1112)
England (N=1051)
21.1% (222/1051)
7.4% (78/1051)
Wales (N=61)
4.9% (3/61)
0.0% (0/61)

Figure 78: Percentage of children and young people diagnosed with epilepsy with
relevant ongoing investigation in England and Wales.

7.0%
20.2%
0%
5%
10%
15%
20%
25%
30%
formal cognitive assessment
formal developmental assessment
% of children and young people
diagnosed with epilepsy

81

Performance indicator 8: Accuracy of diagnosis
In Round 3, cohort 1, 97.2% (1093/1124) of children and young people had the same
diagnosis by their first year of care, (Table 94). This proportion is higher than Round 2.
This indicator ranged from 71.0% to 100% and had an interquartile range of 100% to 100%
at a Health Board or Trust level.
Table 94: Accuracy of diagnosis
Performance indicator 8
Audit
Round
England and
Wales
England
Wales
Accuracy of
diagnosis
% of children
diagnosed
with epilepsy,
who still had
that diagnosis
at one year
Round 1
88.1% (1516/1721)
87.6% (1423/1624)
95.9% (93/97)
Round 2
93.2% (1077/1156)
93.2% (1007/1080)
92.1% (70/76)
Round 3
97.2% (1093/1124)
97.1% (1032/1063)
100% (61/61)

Figure 79: Accuracy of diagnosis by Health Board and Trust, Round 3, cohort 1.
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%

82

Overview of performance indicators
Rounds 1, 2 and 3, cohort 1
Table 95: Performance indicators by country across Rounds 1, 2 and 3, cohort 1
Performance
Indicators

Audit
Round

England and
Wales
England
Wales
1
Paediatricia
n with
expertise in
epilepsies
Round 1
78.0% (1183/1516)
77.7% (1106/1423)
82.8% (77/93)
Round 2
86.1% (938/1090)
86.1% (877/1019)
85.9% (61/71)
Round 3
87.9% (977/1112)
87.9% (924/1051)
86.9% (53/61)
2
Epilepsy
Specialist
Nurse
Round 1
43.4% (658/1516)
41.6% (592/1423)
71.0% (66/93)
Round 2
55.5% (605/1090)
54.5% (555/1019)
70.4% (50/71)
Round 3
69.0% (767/1112)
70.2% (738/1051)
47.5% (29/61)
3 Tertiary
input
Round 1
59.1% (205/347)
59.2% (200/338)
55.6% (5/9)
Round 2
54.1% (119/220)
53.7% (115/214)
66.7% (4/6)
Round 3
59.3% (150/253)
59.2% (142/240)
61.5% (8/13)
5 Seizure
formulation
Round 1
86.9% (1318/1516)
86.8% (1235/1423)
89.2% (83/93)
Round 2
94.9% (1040/1096)
95.5% (973/1019)
94.4% (67/71)
Round 3
88.0% (979/1112)
87.4% (919/1051)
98.4% (60/61)
7 MRI
Round 1
63.5% (602/948)
64.3% (578/899)
49.0% (24/49)
Round 2
72.2% (481/666)
72.7% (458/630)
63.9% (23/36)
Round 3
68.6% (317/462)
70.4% (307/436)
38.5% (10/26)
8 Accuracy of
diagnosis
Round 1
88.1% (1516/1721)
87.6% (1423/1624)
95.9% (93/97)
Round 2
93.2% (1077/1156
93.2% (1007/1080)
92.1% (70/76)
Round 3
97.2% (1093/1124)
97.1% (1032/1063)
100% (61/61)

83

Figure 80: Epilepsy12 Performance indicators for England and Wales
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 81: Epilepsy12 Performance indicators for England.
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.
97.2%
68.6%
88.0%
59.3%
69.0%
87.9%
93.2%
72.2%
95.4%
54.1%
55.5%
86.1%
88.1%
63.5%
86.9%
59.1%
43.4%
78.0%
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
97.1%
70.4%
87.4%
59.2%
70.2%
87.9%
93.2%
72.7%
95.5%
53.7%
54.5%
86.1%
87.6%
64.3%
86.8%
59.2%
41.6%
77.7%
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

84

Figure 82: Epilepsy12 Performance indicators for Wales
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 83: Epilepsy12 Performance indicators by country, Round 3 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
100.0%
38.5%
98.4%
61.5%
47.5%
86.9%
92.1%
63.9%
94.4%
66.7%
70.4%
85.9%
95.9%
49.0%
89.2%
55.6%
71.0%
82.8%
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
29.3%
41.0%
44.3%
100.0%
0.0%
100.0%
38.5%
35.9%
98.4%
86.9%
9.1%
61.5%
47.5%
86.9%
32.4%
71.7%
63.5%
38.7%
100.0%
97.1%
70.4%
69.5%
87.4%
60.1%
33.3%
59.2%
70.2%
87.9%
0%
50%
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…
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

85

Figure 84: Epilepsy12 Performance indicators in England and Wales, Round 3, cohort 1
only

32.2%
70.1%
62.4%
39.7%
100.0%
97.2%
68.6%
67.6%
88.0%
61.6%
30.0%
59.3%
69.0%
87.9%
0%
50%
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 in England and Wales, Round 3
England and Wales

86

Figure 85 below compares the organisational audit results of the epilepsy specialist
nurses in the workforce with the clinical performance indicators. It sets out the
performance indicators for Health Boards and Trusts which employed at least some level
of whole time equivalent (WTE) epilepsy specialist nurse, versus Health Boards and Trusts
with no whole time equivalent (WTE) epilepsy specialist nurse employed.
In Health Boards and Trusts with ESN provision, children and young people diagnosed
with epilepsy were more likely to:
•
be seen by an epilepsy specialist nurse,
•
have individual healthcare plan,
•
have an MRI.

Figure 85: Performance indicators for England and Wales by ESN provision
The 'whiskers' on the chart above represents 95% confidence intervals. If these whiskers
do not overlap, the difference is statistically significant. Only three Health Boards and
Trusts had females 9 years old and greater on sodium valproate hence performance
indicator 9a was not included in this analysis.
14.8%
55.5%
49.4%
14.3%
99.7%
49.9%
64.0%
87.3%
56.4%
23.3%
49.7%
25.9%
83.7%
38.0%
74.3%
61.9%
45.6%
0.0%
97.9%
73.6%
69.0%
88.5%
61.2%
37.5%
62.3%
79.6%
90.0%
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:
> 0 WTE
0 WTE

87

Appendix H: List of clinical data
figures & tables
List of figures (clinical audit)
Figure 30: Percentage of children and young people verified by Health Boards and Trusts
in Round 3 – page 8
Figure 31: The percentage of children and young people within cohort 1 with their first
year of care form submitted and locked – page 9
Figure 32: Numbers of children and young people included in cohort 1 by age in years at
first paediatric assessment and gender. – page 10
Figure 33: Numbers of children and young people included in cohort 1 by age in months
at first paediatric assessment and gender. – page 11
Figure 34: Comparison of the proportion of children and young people by age group in
Round 1, Round 2 and Round 3 – page 13
Figure 35: Percentage of children and young people in cohort 1 by deprivation in England
and Wales combined – page 15
Figure 36: Percentage of children and young people in cohort 1 by deprivation by
country/network – page 16
Figure 37: Percentage of children and young with/without prior experience of seizures –
page 18
Figure 38: Percentage of children and young people in Cohort 1 by diagnostic status at
first year of care, in England and Wales – page 20
Figure 39: 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 – page 22
Figure 40: Diagnosis at first assessment and one year after first assessment in Round 1,
Round 2, Round 3 – page 23
Figure 41: Percentage of children and young people by description of non-epileptic
episode – page 24
Figure 42: Referring service to first paediatric assessment in England and Wales -page 25
Figure 43: Numbers of children and young people diagnosed with epilepsy by age in
years at first paediatric assessment and gender in England and Wales – page 27
Figure 44: Setting of first paediatric assessment in Round 1, Round 2 and Round 3 in
England and Wales – page 28
Figure 45: Appropriate first paediatric assessment by unit, Round 3 cohort 1 – page 30
Figure 46: Percentage of children and young people diagnosed with epilepsy who had
focal onset seizures in England and Wales – page 32
Figure 47: Percentage of children and young people diagnosed with epilepsy who had
generalised onset seizures in England and Wales – page 34
Figure 48: Percentage of children and young people diagnosed with epilepsy who had
generalised onset seizures in England and Wales – page 36
Figure 49: Percentage of children and young people diagnosed with epilepsy that had
unknown onset seizures in England and Wales. – page 37

88

Figure 50: Number of children and young people diagnosed with epilepsy by
electroclinical syndrome in England and Wales. – page 38
Figure 51: Seizure formulation, by Health Board or Trust, Round 3. – page 40
Figure 52: Percentage of children and young people diagnosed with epilepsy who had
structural seizure cause. – page 41
Figure 53: Percentage of children and young people diagnosed with epilepsy with/with
no convulsive epileptic seizures in England and Wales. – page 42
Figure 54: Percentage of children and young people diagnosed with epilepsy by
prolonged generalised convulsive epileptic seizures in England and Wales. – page 43
Figure 55: Percentage of children and young people diagnosed with epilepsy by
prolonged focal convulsive epileptic seizures in England and Wales – page 44
Figure 56: Percentage of children and young people diagnosed with epilepsy with/with
no family history of epilepsy in England and Wales. – page 45
Figure 57: Neurodisability/neurodevelopmental problems among children diagnosed
with epilepsy in cohort 1. – page 48
Figure 58: Number of children diagnosed with epilepsy by mental health problem in
England and Wales. – page 50
Figure 59: 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 – page 53
Figure 60: Percentage of children and young people with convulsive seizures and
epilepsy, with an ECG at first year by Health Board or Trust, Round 3. – page 55
Figure 61: Percentage of children and young people with defined indications for an MRI,
who had MRI by first year by Health Board or Trust, Round 3 – page 57
Figure 62: Frequency by AED type in England and Wales (Round 3). – page 59
Figure 63: Number of children and young people diagnosed with epilepsy on sodium
valproate by gender in England and Wales, Round 3 cohort 1. – page 60
Figure 64: Percentage females currently on sodium valproate treatment with evidence of
discussion of foetal risk by Health Board or Trust, Round 3. – page 62
Figure 65: Percentage of children and young people diagnosed with epilepsy that
had/did not have rescue medication prescribed in England and Wales. – page 63
Figure 66: Percentage of children and young people diagnosed with epilepsy that had
rescue medication prescribed by country and network – page 63
Figure 67: Percentage of children and young people diagnosed with epilepsy that
met/did not meet any CESS referral criteria in England and Wales. – page 64
Figure 68: Percentage of children and young people diagnosed with epilepsy that met
any CESS referral criteria by country and network. – page 65
Figure 69: Comprehensive Care Planning agreement, Round 3. – page 69
Figure 70: Comprehensive Care Planning content by Health Board or Trust, Round 3. –
page 71
Figure 71: School Individual Healthcare Plan, by Health Board or Trust, Round 3 – page 72
Figure 72: Percentage of children and young people diagnosed with Epilepsy
with/without evidence of SUDEP information in England and Wales. – page 73
Figure 73: Percentage of children and young people diagnosed with evidence of SUDEP
information by country and network. – page 73

89

Figure 74: Percentage of children and young people diagnosed with epilepsy with input
from various professionals in England and Wales. – page 75
Figure 75: Paediatrician with expertise in epilepsies by Health Board or Trust, Round 3. –
page 77
Figure 76: Epilepsy Specialist Nurse by Health Board or Trust, Round 3. – page 78
Figure 77: Tertiary input by Health Board or Trust, Round 3. – page 79
Figure 78: Percentage of children and young people diagnosed with epilepsy with
relevant ongoing investigation in England and Wales. – page 80
Figure 79: Accuracy of diagnosis by Health Board or Trust, Round 3. – page 81
Figure 80: Epilepsy12 Performance indicators for England and Wales – page 83
Figure 81: Epilepsy12 Performance indicators for England – page 83
Figure 82: Epilepsy12 Performance indicators for Wales. – page 84
Figure 83: Epilepsy12 Performance indicators by country, Round 3 cohort 1 – page 84
Figure 84: Epilepsy12 Performance indicators in England and Wales, Round 3 cohort 1
only – page 85
Figure 85: Performance indicators for England and Wales by ESN provision – page 86

List of tables (clinical audit)
Table 47: Participation in Round 3 of Epilepsy12 – page 5
Table 48: Shows the flow of children and young people through the data capture system
– page 6
Table 49: Number of children and young people registered as eligible for the audit. –
page 7
Table 50: Number of children and young people in cohort 1 by country, network and age-
group. – page 12
Table 51: Demographic characteristics of children included in Round 1, 2 and 3 of
Epilepsy12. – page 13
Table 52: Percentage and number of children and young people in cohort 1 by
deprivation by country and Open UK network. – page 14
Table 53: Prior experience of seizures in children and young people in cohort 1 in England
and Wales. – page 17
Table 54: Diagnostic status at first year of care by country and Open UK network. – page
19
Table 55: Diagnostic status at first paediatric assessment by country and Open UK
network. – page 21
Table 56: Description of non-epileptic episodes in children in cohort 1 at one year after
first assessment in England and Wales – page 24
Table 57: Referring service to first paediatric assessment by country. – page 25
Table 58: Time in weeks to achieving input from paediatrician with expertise in epilepsy
since the first referral to paediatrics by country. – page 26
Table 59: Setting of the first paediatric assessment by country. – page 28
Table 60: Appropriate first paediatric assessment. – page 29

90

Table 61: Number of seizures in children diagnosed with epilepsy by country. – page 31
Table 62: Seizure type. – page 31
Table 63: Epileptic seizure type. – page 32
Table 64: Percentage of children and young people diagnosed with epilepsy who had
focal onset seizures in England and Wales. – page 33
Table 65: Percentage of children and young people diagnosed with epilepsy who had
generalised onset seizures in England and Wales. – page 35
Table 66: Percentage of children and young people diagnosed with epilepsy who had
unknown onset seizures in England and Wales. – page 36
Table 67: Seizure formulation. – page 39
Table 68: Percentage of children and young people diagnosed with epilepsy by seizure
cause in England and Wales. – page 41
Table 69: Convulsive epileptic seizures in children and young people diagnosed with
epilepsy by country – page 42
Table 70: Prolonged generalised convulsive epileptic seizures in children and young
people diagnosed with epilepsy. – page 43
Table 71: Prolonged focal convulsive epileptic seizures in children and young people
diagnosed with epilepsy by country. – page 44
Table 72: Family history of epilepsy in children and young people diagnosed with
epilepsy by country. – page 45
Table 73: Neurodisability / neurodevelopmental problems among children diagnosed
with epilepsy in Round 3. – page 47
Table 74: 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 48
Table 75: Percentage of children and young people diagnosed with mental health
problems in England and Wales. – page 49
Table 76: Percentage of children and young people between age 5-15 years and
diagnosed with mental health condition that had ongoing investigations in England and
Wales. – page 50
Table 77: Time in weeks to when EEG was obtained since EEG request date by country –
page 51
Table 78: 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 52
Table 79: Percentage of children and young people with convulsive seizures and
epilepsy, with an ECG at first year. - 54
Table 80: Percentage of children and young people with defined indications for an MRI,
who had MRI by first year – page 56
Table 81: Diagnosis and AEDs. – page 58
Table 82: Sodium Valproate in females. – page 61
Table 83: Epilepsy surgery referral. – page 66
Table 84: Time in weeks since referral to neurologist by country. – page 66
Table 85: Time in weeks since referral to neurologist by country. – page 67

91

Table 86: Comprehensive Care Planning agreement. – page 68
Table 87: Comprehensive Care Planning content. – page 70
Table 88: School Individual Healthcare Plan. – page 72
Table 89: Percentage of children and young people diagnosed with epilepsy with input
from various professionals by Country. – page 74
Table 90: Paediatrician with expertise in epilepsies. – page 76
Table 91: Epilepsy Specialist Nurse. – page 78
Table 92: Tertiary input. – page 79
Table 93: Number of children and young people diagnosed with epilepsy with relevant
ongoing investigation by country – page 80
Table 94: Accuracy of diagnosis – page 81
Table 95: Performance indicators by country across Rounds 1, 2 and 3 cohort 1 – page 82

92

Appendix I: Data completeness
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.

Preliminary outlier analysis against cohort 1 data was undertaken for three audit
measures: children verified on the data platform, children with a locked first year of care
record, children with epilepsy who saw a paediatrician with expertise in the first year of
care. The data for children verified on the system and those seen by a specialist
measures did not form a ‘normal’ distribution. This meant the planned analytical
approach was unsuitable and we were unable to reliably identify outliers based on these
measures. On the third measure, children with a complete year of care record, the
relatively small dataset was a risk to identifying outliers with statistical validity.

Cohort 1 was based on a patient group who underwent a first paediatric assessment
within a five-month period between July and November 2018. After piloting this outlier
analysis with cohort 1, the outlier analysis for cohorts 2 and 3 will both be based on 12-
month periods. Therefore we expect future datasets to be sufficiently robust to allow us
to complete the full outlier analysis for these data.

Health Boards and Trusts in the results
Organisational audit
The Epilepsy12 project team originally identified 163 Health Boards and Trusts (acute,
community and tertiary) with paediatric services across England and Wales in August
2017 as potentially eligible to participate in Round 3 of Epilepsy12. This was based on
information from the 2017 British Association for Community Child Health (BACCH) and
Royal College of Paediatrics and Child Health (RCPCH) publication “Covering all bases -
Community Child Health: A paediatric workforce guide”.
Of the 163, one Health Board in Wales did not register and five acute Trusts in England
were no longer eligible due to mergers. Nine of the remaining 157 were community
Trusts which were excluded because they either had no paediatric services, or they

93

defined their paediatric service as not assessing or managing children with seizures or
epilepsies.
This left 148 registered Health Boards and Trusts, all of whom provided a submitted a full
2018 organisational audit submission for Round 3 of Epilepsy12 (including 100% of acute
Trusts in England).
The 2019 Organisational audit saw the inclusion of Birmingham Community Healthcare
NHS Foundation Trust which made 149 registered Health Boards and Trusts. There were
eight separate Trusts mergers which meant a total of 141 of Health Boards and Trusts.
The following Health Boards and Trusts were not included within the 2019
organisational audit results:

Health Board or Trust
Regional Network
1
Brighton and Sussex University Hospitals NHS Trust+
SETPEG
2
Cardiff & Vale University LHB+
SWEP
3
Coventry and Warwickshire Partnership NHS Trust+
BRPNF
4
Gloucestershire Hospitals NHS Foundation Trust
SWIPE
5
Leicestershire Partnership NHS Trust
CEWT
6
Maidstone and Tunbridge Wells NHS Trust+
SETPEG
7
North East London NHS Foundation Trust+
NTPEN
8
Plymouth Hospitals NHS Trust+
SWIPE
9
Surrey and Sussex Healthcare NHS Trust+
SWTPEG
+Trusts that were not included within the 2019 organisational results due to data that was either not
submitted in time, or not ‘locked’ (a form of verification).

94

Clinical audit
The following Trusts and Health Boards were not included within the 2018-2019
national clinical audit results:

Health Board or Trust
Regional
Network
1
Aneurin Bevan LHB
SWEP
2
Barking, Havering and Redbridge University Hospitals NHS Trust
NTPEN
3
Barts Health NHS Trust
NTPEN
4
Basildon and Thurrock University Hospitals NHS Foundation Trust
NTPEN
5
Blackpool Teaching Hospitals NHS Foundation Trust
NWEIG
6
Brighton and Sussex University Hospitals NHS Trust+
SETPEG
7
Burton Hospitals NHS Foundation Trust
BRPNF
8
Cambridge University Hospitals NHS Foundation Trust
EPEN
9
Cardiff & Vale University LHB+
SWEP
10
Coventry and Warwickshire Partnership NHS Trust+
BRPNF
11
Croydon Health Services NHS Trust
SWTPEG
12
East Cheshire NHS Trust
NWEIG
13
Epsom and St Helier University Hospitals NHS Trust
SWTPEG
14
George Eliot Hospital NHS Trust
BRPNF
15
*Great Ormond Street Hospital for Children NHS Foundation Trust
NTPEN
16
Guy's and St Thomas' NHS Foundation Trust
SETPEG
17
James Paget University Hospitals NHS Foundation Trust
EPEN
18
Leeds Community Healthcare NHS Trust
YPEN
19
Luton and Dunstable University Hospital NHS Foundation Trust
EPEN
20 Maidstone and Tunbridge Wells NHS Trust+
SETPEG
21
Medway NHS Foundation Trust
SETPEG
22
North East London NHS Foundation Trust+
NTPEN
23
North Tees and Hartlepool NHS Foundation Trust
PENNEC
24
Northern Devon Healthcare NHS Trust
SWIPE
25
Plymouth Hospitals NHS Trust+
SWIPE
26
Portsmouth Hospitals NHS Trust
WPNN
27
Sandwell and West Birmingham Hospitals NHS Trust
BRPNF
28
South Tyneside NHS Foundation Trust
PENNEC
29
Surrey and Sussex Healthcare NHS Trust+
SWTPEG
30 Sussex Community NHS Foundation Trust
SETPEG
31
The Princess Alexandra Hospital NHS Trust
EPEN
32
The Queen Elizabeth Hospital, King's Lynn, NHS Foundation Trust
EPEN
33
University Hospital Southampton NHS Foundation Trust
WPNN
34
University Hospitals Bristol NHS Foundation Trust
SWIPE
35
Weston Area Health NHS Trust
SWIPE
36
Yeovil District Hospital NHS Foundation Trust
SWIPE

*Tertiary Trust that does not conduct first assessments for children with epilepsy or seizures
+Trusts that were not included within the 2019 organisational results due to data that was not submitted
to the audit.

95

Appendix J: 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 clinical and organisational audit in 2018-19.
Birmingham Regional Paediatric Neurology Forum (BRPNF)
Birmingham Community Healthcare NHS Foundation Trust
Birmingham Women's and Children's NHS Foundation Trust
Burton Hospitals NHS Foundation Trust+
Coventry and Warwickshire Partnership NHS Trust
George Eliot Hospital NHS Trust
Sandwell and West Birmingham Hospitals NHS Trust
South Warwickshire NHS Foundation Trust
The Dudley Group NHS Foundation Trust
The Royal Wolverhampton NHS Trust
University Hospitals Birmingham 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)
Derby Teaching Hospitals NHS Foundation Trust+
Leicestershire Partnership NHS Trust
Nottingham University Hospitals NHS Trust
Sherwood Forest Hospitals NHS Foundation Trust
United Lincolnshire Hospitals NHS Trust
University Hospitals of Leicester NHS Trust
Eastern Paediatric Epilepsy Network (EPEN)
Bedford Hospital NHS Trust
Cambridge University Hospitals NHS Foundation Trust
Cambridgeshire Community Services NHS Trust
Colchester Hospital University NHS Foundation Trust+
East and North Hertfordshire NHS Trust

96

Ipswich Hospital NHS Trust+
James Paget University Hospitals NHS Foundation Trust
Luton and Dunstable University Hospital NHS Foundation Trust
Mid Essex Hospital Services NHS Trust
Norfolk and Norwich University Hospitals NHS Foundation Trust
Norfolk Community Health and Care NHS Trust
North West Anglia NHS Foundation Trust
The Princess Alexandra Hospital NHS Trust
The Queen Elizabeth Hospital, King's Lynn, NHS Foundation Trust
West Suffolk 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
Mid Cheshire Hospitals NHS Foundation Trust
Shrewsbury and Telford Hospital NHS Trust
Southport and Ormskirk Hospital NHS Trust
St Helens and Knowsley Hospitals NHS Trust
Warrington and Halton Hospitals NHS Foundation Trust
Wirral University Teaching Hospital NHS Foundation Trust
North Thames Paediatric Epilepsy Network (NTPEN)
Barking, Havering and Redbridge University Hospitals NHS Trust
Barts Health NHS Trust
Basildon and Thurrock University Hospitals NHS Foundation Trust
Central and North West London NHS Foundation Trust
Chelsea and Westminster Hospital NHS Foundation Trust
Great Ormond Street Hospital For Children NHS Foundation Trust
Homerton University Hospital NHS Foundation Trust
Imperial College Healthcare NHS Trust
London North West Healthcare NHS Trust
North East London NHS Foundation 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

97

West Hertfordshire Hospitals NHS Trust
North West Children and Young People's Epilepsy Interest Group (NWEIG)
Blackpool Teaching Hospitals NHS Foundation Trust
Bolton NHS Foundation Trust
East Cheshire NHS Trust
East Lancashire Hospitals NHS Trust
Lancashire Teaching Hospitals NHS Foundation Trust
Manchester University NHS Foundation Trust
Northern Care Alliance NHS Group
Salford Royal NHS Foundation Trust+
Stockport NHS Foundation Trust
Tameside and Glossop Integrated Care NHS Foundation Trust
University Hospitals of Morecambe Bay NHS Foundation Trust
University Hospitals of North Midlands NHS Trust
Wrightington, Wigan and Leigh NHS Foundation Trust
Oxford region epilepsy interest group (ORENG)
Buckinghamshire Healthcare NHS Trust
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)
City Hospitals Sunderland NHS Foundation Trust+
County Durham and Darlington NHS Foundation Trust
Gateshead Health NHS Foundation Trust
North Cumbria University Hospitals NHS Trust
North Tees and Hartlepool NHS Foundation Trust
Northumbria Healthcare NHS Foundation Trust
South Tees Hospitals NHS Foundation Trust
South Tyneside NHS Foundation Trust+
The Newcastle Upon Tyne Hospitals NHS Foundation Trust
South East Thames Paediatric Epilepsy Group (SETPEG)
Brighton and Sussex University Hospitals NHS Trust
Dartford and Gravesham NHS Trust
East Kent : QEQM, Margate and WHM, Ashford, Kent

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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
Medway NHS Foundation Trust
Sussex Community NHS Foundation Trust
South Wales Epilepsy Forum (SWEP)
Abertawe Bro Morgannwg University LHB
Aneurin Bevan LHB
*Cardiff & Vale University LHB
Cwm Taf LHB
Hywel Dda LHB
South West Interest Group Paediatric Epilepsy (SWIPE)
Gloucestershire Hospitals NHS Foundation Trust
Northern Devon Healthcare NHS Trust
Plymouth Hospitals NHS Trust
Royal Cornwall Hospitals NHS Trust
Royal Devon and Exeter NHS Foundation Trust
Royal United Hospitals Bath NHS Foundation Trust
Taunton and Somerset NHS Foundation Trust
Torbay and South Devon NHS Foundation Trust
University Hospitals Bristol NHS Foundation Trust
Weston Area Health NHS Trust
Yeovil District Hospital NHS Foundation Trust
South West Thames Paediatric Epilepsy Group (SWTPEG)
Ashford and St Peter's Hospitals NHS Foundation Trust
Croydon Health Services NHS 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
Surrey and Sussex Healthcare NHS Trust
Trent Epilepsy Network (TEN)
Barnsley Hospital NHS Foundation Trust
Chesterfield Royal Hospital NHS Foundation Trust

99

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
Wessex Paediatric Neurosciences Network (WPNN)
Dorset County Hospital NHS Foundation Trust
Hampshire Hospitals NHS Foundation Trust
Isle of Wight NHS Trust
Poole Hospital NHS Foundation Trust
Portsmouth Hospitals NHS Trust
Salisbury NHS Foundation Trust
Solent NHS Trust
University Hospital Southampton NHS Foundation Trust
Western Sussex Hospitals NHS Foundation Trust
Yorkshire Paediatric Neurology Network (YPEN)
Airedale NHS Foundation Trust
Bradford Teaching Hospitals NHS Foundation Trust
Calderdale and Huddersfield NHS Foundation Trust
Harrogate and District NHS Foundation Trust
Hull and East Yorkshire Hospitals NHS Trust
Leeds Community Healthcare NHS Trust
Leeds Teaching Hospitals NHS Trust
Mid Yorkshire Hospitals NHS Trust
York Teaching Hospital NHS Foundation Trust

The following Trusts merged prior to the November 2019 organisational audit.
Trust mergers
East Suffolk and North Essex NHS Foundation Trust (formerly Colchester Hospital
University NHS Foundation Trust & Ipswich Hospital NHS Trust, merged July 2018)
Northern care Alliance (Merged with Salford Royal NHS Foundation Trust, April 2017)
University Hospitals of Derby and Burton NHS Foundation Trust (formerly Burton
Hospitals NHS Foundation Trust & Derby Hospitals NHS Foundation Trust, merged July
2018)
South Tyneside and Sunderland NHS Foundation Trust (formerly South Tyneside NHS
Foundation Trust & City Hospitals Sunderland NHS Foundation Trust, merged April
2019)

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Appendix K: Glossary of terms and
abbreviations
Absence seizure
A type of generalised seizure where the person briefly
loses awareness and becomes blank or unresponsive.
Absences often last a few seconds and the person is
unconscious. If they are walking they might carry on
walking.
Acute
Inpatient review, or paediatric review in emergency
department, or other clinical assessment in an acute
paediatric setting
Adherence
When someone takes their medication as they have
agreed with their doctor. This is a more modern term than
‘compliance’ (doing what your doctor tells you to), and
implies that there has been some discussion between the
individual and their doctor to agree upon a plan of
treatment. Whether someone is adherent or not is a
measure of how closely they adhere (or 'stick to') taking
their medication or treatment as agreed.
Adverse events
Another term for 'side effects'. These are effects of
medication that happen alongside the effects you are
expecting (the reason you are taking it). Side effects are
usually, but not always, unwanted.
AED (Anti-epileptic drug)
Anti-epileptic drugs (AEDs) are the main type of
treatment for most people with epilepsy. AEDs are a type
of medication that aims to stop seizures. There are many
different AEDs and they work in different ways and stop
different types of seizures. Up to 70% of people with
epilepsy could have their seizures stopped with the right
AEDs.
Atonic or atonic seizure
A type of generalised seizure where the person’s muscles
suddenly lose tone, go floppy, and they fall down (usually
forwards) if they are standing up. Although the seizures
themselves don’t hurt, the person might hurt themselves,
especially their head and face, when they fall. These
seizures are usually very brief and the person becomes
conscious again very quickly. This is sometimes called a
‘drop attack’.
BPT/BPC
Best Practice Tariff/Best Practice Criteria
Children’s Epilepsy
Specialist Nurse
A children’s nurse with a defined role and specific
qualification and/or training in children’s epilepsies

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Childhood epilepsy
syndrome
A type of epilepsy that happens in children and young
people, and follows a particular, typical pattern: the age
that the seizures start, the type of seizures, the EEG
recording and the progression or outcome. Some
syndromes are benign and either go away or have little
impact on the child. Others are severe and can affect the
child’s behaviour, learning and life expectancy. This is
sometimes just referred to as a ‘syndrome’.
Clonic seizures
These are seizures where the person convulses (jerks or
shakes). Unlike tonic clonic seizures, the person does not
go stiff at the start of the seizure.
Clusters
When a series or group of seizures happen close together
in time, with gaps between each cluster. For example, in
catamenial epilepsy, a woman might have a cluster of
seizures around ovulation and no seizures at other times.
Complex focal seizures
(CFS), Complex partial
seizures (CPS)
Seizures that involve just part (not the whole) of the brain.
These seizures used to be called 'complex partial seizures'
or 'CPS'. The person will not be fully conscious and they
are often very confused and may not remember what
happens during the seizure. During CFS the person may
behave strangely or make repetitive movements called
automatisms.
Consultant General
Paediatrician
A paediatric consultant (or associate specialist) with a role
that includes seeing children or young people in a general
outpatient or community clinic setting. They may or may
not have other specialty or acute roles. They are likely to
receive referrals directly from primary care.
Neonatologists would not be included in this definition
unless they also fulfil general paediatric roles.
Convulsive seizure
A seizure where the person’s body jerks or shakes. It is
another name for tonic clonic or clonic seizures.
Diazepam
A type of sedative medication that is given to someone in
status epilepticus to stop the seizures. Diazepam is given
rectally (up the bottom). This is sometimes referred to as a
type of 'emergency medication'.
ECG
An electrocardiogram (ECG) is a simple test that can be
used to check your heart's rhythm and electrical activity.
Sensors attached to the skin are used to detect the
electrical signals produced by your heart each time it
beats.
ED
Emergency Department
Electroencephalogram
(EEG)
An electroencephalogram (EEG) is a recording of brain
activity. During the test, small sensors are attached to the
scalp to pick up the electrical signals produced when
brain cells send messages to each other. These signals are
recorded by a machine and are looked at by a doctor later
to see if they're unusual.
Emergency medication
Medication that is given to stop prolonged or repeated
seizures (to stop status epilepticus from happening).

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Epilepsy
A chronic neurological condition characterised by two or
more epileptic seizures (International League Against
Epilepsy, ILAE). A pragmatic definition for epilepsy in this
audit is 2 or more epileptic seizures more than 24 hours
apart that are not acute symptomatic seizures or febrile
seizures.
Epilepsy surgery
Different types of surgery on the brain to try to reduce or
stop seizures. Some people with epilepsy, whose seizures
are not controlled or significantly reduced with
medication, are able to have epilepsy surgery. Also called
neurosurgery.
Epilepsy syndrome
A complex of clinical features, signs and symptoms that
together define a distinctive, recognizable clinical disorder
(ILAE)
‘Epilepsy syndrome
category’
A group of epilepsies described using the terms idiopathic
primary, symptomatic, probably symptomatic and
cryptogenic and focal, partial, multifocal or generalized
Epileptic seizure
Seizures that start due to interrupted electrical activity in
the brain but can affect the body in many different ways.
Clinical manifestation(s) of epileptic (excessive and/or
hypersynchronous), usually self-limited activity of neurons
in the brain. (ILAE)
Febrile convulsions
Convulsive seizures that can happen in young children
(from about six months to six years of age) when they
have a high temperature or fever. Febrile convulsions
happen because very young children cannot control their
body temperature very well. Although they can look like
epileptic seizures they are not: they are caused by high
temperatures not interrupted brain activity.
First paediatric assessment
A 'face to face’ assessment by a secondary level/tier
doctor in a paediatric service occurring in any non-acute
or acute setting.
Assessment within emergency department counts if
performed by paediatric team rather than an emergency
department team. Some paediatric neurologists see
referrals direct from GP or ED and these would count as
both a first paediatric assessment and tertiary input
Focal seizures
These are seizures that happen in, and affect, only part or
one side of the brain (not both sides of the brain) and start
from a 'focal point' in the brain. What happens in focal
seizures varies depending on which part of the brain is
affected and what that part of the brain normally does.
Also known as 'partial seizures'.
Frontal lobe seizures
Focal seizures that start in the frontal lobe. Simple focal
seizures from the frontal lobe include making strange
movements or stiffness or jerking in part of the body such
as the arm. Complex focal seizures from this area include
making strange postures with the arms or legs or making
juddering movements.

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General examination
Any evidence of a multisystem examination of the child
other than neurological examination
General practitioners (GP)
A doctor based in the community who treats patients with
all common medical conditions with minor or chronic
illnesses and refers those with serious conditions to a
hospital. for urgent and specialist treatment. They focus
on the health of the whole person combining physical,
psychological and social aspects of care.
Generalised seizures
Seizures that happen in, and affect, the both sides of the
brain from the start. There are many different types of
generalised seizures, but they all involve the person
becoming unconscious, even just for a few seconds, and
they won't remember the seizure itself. The most well-
known generalised seizure is the tonic clonic (convulsive)
seizure.
Genetic
The information in the DNA in our cells that controls our
characteristics, for example hair colour, sex and height.

Handover clinic
A clinic where a young people 'leaves the paediatric
service and joins an adult service' and comprises both
adult and paediatric health professionals
Infantile spasms (also called
West Syndrome)
A rare childhood epilepsy syndrome that starts in the first
year of life. The child has brief jerks or spasms of the arms,
legs or whole body, often in clusters. Some children have
problems with learning or behaviour.

Input
Any form of documented clinical contact including face
to face clinical, written, electronic or telephone contact
Juvenile myoclonic epilepsy
(JME)
A type of childhood epilepsy syndrome that starts
between the ages of 11 and 18 years. The person usually
has myoclonic seizures when they are waking up and
might also have absences and tonic clonic seizures. This
syndrome usually responds well to medication.
Ketogenic diet
A high fat, controlled protein, low carbohydrate diet that
helps control seizures in some children with epilepsy. The
diet works by encouraging the body to get energy from
fat (rather than from carbohydrates). When this happens,
the body produces chemicals called ketones which, for
some children, help prevent seizures from happening.
Ketones
Chemicals produced in the body when the body uses fat
for energy. This happens in high-fat diets such as the
ketogenic diet. Ketones can help prevent seizures from
happening for some people.
Ketosis
The process of producing ketones in the body, when the
body uses fat for energy.
Magnetic resonance
imaging (MRI)
A type of scan that uses strong magnetic fields and radio
waves to produce detailed images of the inside of the
body. An MRI scanner is a large tube that contains
powerful magnets
Midazolam
A type of medication that is given to someone who is
having prolonged or repeated seizures, to stop status

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epilepticus from happening. Buccal means it is given into
the mouth between the teeth and the cheek. Midazolam
is a type of emergency medication.
Myoclonic seizure
A type of generalised seizure where just part of the body
(for example, a leg or arm) suddenly jerks. Myoclonic jerks
often happen in clusters (several happening in a row) and
often early in the morning.
Neurodisability
Documented diagnosis including any of the following
phrases indicating the diagnosis made by the assessing
team:
•
Autistic spectrum disorder
•
Moderate, severe (or profound) learning difficulty
or global
development delay
•
Cerebral palsy
•
Neurodegenerative disease or condition
•
An identified chromosomal disorder with a
neurological or developmental component
•
Attention deficit hyperactivity disorder (ADHD)
•
Exclusions e.g. hypermobility, dyspraxia, specific
learning
difficulties e.g. (dyslexia, dyscalculia)
Neurological examination
Any evidence of a neurological examination of the child
Paediatrician with expertise
A paediatric consultant (or associate specialist) defined by
themselves, their employer and tertiary service/network
as having:
•
training and continuing education in epilepsies
•
AND peer review of practice
•
AND regular audit of diagnosis (e.g. participation in
Epilepsy12)

(Consensus Conference on Better care for children and
adults with epilepsy- Final Statement, Royal College of
Physicians of Edinburgh,2002) A paediatric neurologist is
also defined as a 'paediatrician with expertise'.
Parietal lobe seizures
Focal seizures that start in the parietal lobe. Simple focal
seizures from the parietal lobe include feeling numb or
tingling in part of the body, a burning sensation or feeling
of heat, or feeling that parts of the body are bigger or
smaller than they really are. Complex focal seizures from
this area are rare.
Partial seizures
Another name for 'focal seizures'. There are seizures that
happen in, and affect, only part of the brain (not both
sides of the brain) and start from a 'focal point' in the
brain. What happens in these seizures varies depending
on which part of the brain is affected and what that part
of the brain normally does.

105

Paroxysmal episodes
This is the term chosen in this audit to represent the
events causing concern. It includes all epileptic and non-
epileptic seizures and also seizures of uncertain in origin.
Psychiatrist
A medically trained doctor who specialises in mental
health problems. Psychiatrists are medically qualified and
can prescribe medications.
Psychologist
Someone who studies the way the mind works and how
people behave. Clinical psychologists are trained to help
people manage mental health and social problems and
they cannot prescribe medications.
Refractory epilepsy
Epilepsy that does not respond to AEDs (AEDs do not stop
the seizures). This is also called intractable, drug-resistant
or difficult to control epilepsy.
Rescue medication
Medication that is given to a person when they are having
prolonged or repeated seizures to stop status epilepticus
from happening. It is usually either rectal diazepam or
buccal midazolam. These are only given in an emergency:
they are not the same as AEDs, which are taken every day
to prevent seizures.
Risk assessment
An assessment of someone's safety and possible risks.
This might be at work, at home or any other area.
Assessments look at risks to health and safety as well as
ways to reduce risk, such as making reasonable
adjustments or taking safety measures.
Secondarily generalised
seizures
Seizures that start as a focal seizure (in part of the brain)
but the seizure activity spreads and affects the whole of
the brain. In simple terms these are ‘small seizures’ that
become ‘big seizures’. The focal seizure start is sometimes
called an ‘aura’ or ‘seizure warning’, and the seizure usually
spreads to become a tonic clonic seizure.
Seizure
A sudden, short-lived event that causes a change in the
person’s behaviour, awareness or consciousness. There
are lots of different causes and types of seizures including
epileptic seizures, hypoglycaemic (diabetic) seizures, non-
epileptic seizures, syncope (fainting), and seizures caused
by a heart problem.
Seizure control
When seizures are completely stopped, and the person
experiences no seizures anymore. This is usually achieved
by taking AEDs.
Seizure-free
When a person’s seizures are fully controlled and stop
happening (they don't have seizures anymore).
Severe Myoclonic Epilepsy
in Infancy (SMEI) (also called
Dravet Syndrome)
A rare childhood epilepsy syndrome that starts in a child’s
first few years of life. The child has jerking seizures, usually
on one side of the body. They may also be photosensitive.
Learning, speech and general development may be
affected.
SUDEP (Sudden Unexpected
Death in Epilepsy)
When a person with epilepsy suddenly dies and no reason
for their death can be seen.

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Symptomatic epilepsy
Epilepsy where there is a known physical cause of the
person’s seizures. This could be due to a scar on the brain,
an accident or head injury, or a stroke or brain tumour.
Structural causes can often be seen on an MRI.
Syncope
When someone loses consciousness and collapses
because the oxygen getting to their brain temporarily
stops. This can be because of a drop-in blood pressure, a
change in the heartbeat (and not enough blood is pumped
through the heart), or because of a reduced amount of
oxygen in the blood. Syncope is also another word for
‘faint’.
'School age'
Child 5 years and older (past their 5th birthday)
Temporal lobe seizures
Focal seizures that start in the temporal lobe. Simple focal
seizures from the temporal lobe include an epigastric
rising sensation, a sudden feeling of fear or joy or a funny
taste or smell.
Tonic clonic seizure
A type of generalised seizure where the person stiffens
(the ‘tonic’ part), falls down if they are standing, and then
shakes, jerks or convulses (the ‘clonic’ part).
Transition
When the management of someone's epilepsy moves
('transfers') from a paediatrician to an adult neurologist.
Transition usually happens at around 16 - 18 years of age.
Treatment plan
A record of the number and types of AED taken, when to
take them and what to do if they do not work or need
adjusting or changing. This is also called a drug plan.
Vagus nerve
The Vagus nerves connect to many different parts of the
body and passes messages between the brain and various
organs, including the throat, the heart, organs in the chest
and abdomen.
Vagus Nerve Stimulation
(VNS)
A type of treatment for epilepsy. It involves having a
generator implanted in the chest wall attached to
electrical wires around the Vagus nerve in the neck. The
generator sends regular electrical signals through the
Vagus nerve into the brain. For some people, this prevents
or reduces the brain activity that causes seizures, and can
reduce the number, length or severity of seizures they
have.
Video telemetry
A test which involves having an EEG and being videotaped
at the same time. This means that the EEG recording of a
seizure can be compared to what is seen happening to the
person. This can help to diagnose epilepsy and non-
epileptic seizures.