Epilepsy12 2024 Clinical Audit Extended Analysis
Source: data.gov.uk (2024-11-06)

Epilepsy12 2024 National organisational and clinical audits - combined report on 2023 data. This is a combined report of the organisational and clinical audits for Round 4 Cohort 5, published in 2024.

Epilepsy12, the UK collaborative clinical audit of health care for children and young people with suspected epileptic seizures is a national clinical audit delivered by the Royal College of Paediatrics and Child Health. It is commissioned by the Healthcare Quality Improvement Partnership (HQIP) and funded by NHS England and the Welsh Government. In 2022, a further contract was awarded to RCPCH to deliver the audit up to 31 March 2025.

The results are of the organisation of paediatric epilepsy services for children and young people in England and Wales as described at November 2023, and the standard of clinical care provided by services that focuses on patients in ‘cohort 5’. This is children and young people who had a first paediatric assessment for a ‘paroxysmal episode’ (or episodes) between 1 December 2021 and 30 November 2022.

This data should not be interpreted without referring to the combined reports summary and extended analyses that contain the reports' full results. which is available at: https://www.rcpch.ac.uk/resources/epilepsy12-national-organisational-audit-clinical-audit-2024

National Clinical Audit of Seizures and
Epilepsies for Children and Young
People
Extended Analysis A
2024 Clinical audit national
& regional results
Cohort 5

2
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Contents
Introduction __________________________________________________________________________________ 3
Participation, Case ascertainment and data completeness __________________________________ 4
Participation __________________________________________________________________ 4
Case Ascertainment ____________________________________________________________ 4
Data completeness _____________________________________________________________ 5
Diagnostic Status ______________________________________________________________ 7
Description of cohort _________________________________________________________________________ 9
Demographics _________________________________________________________________ 9
Multiaxial diagnosis ____________________________________________________________ 14
Mental health and neurodisability ______________________________________________ 21
Key Performance Indicators ________________________________________________________________ 24
1. Paediatrician with expertise in epilepsies; ____________________________________ 25
input within 2 weeks __________________________________________________________ 25
2. Epilepsy Specialist Nurse ____________________________________________________ 28
3a. Tertiary Input ______________________________________________________________ 32
3b. Epilepsy Surgery Referral __________________________________________________ 35
4. ECG ________________________________________________________________________ 38
5. MRI _________________________________________________________________________ 42
6. Assessment of Mental Health issues _________________________________________ 45
7. Mental Health Support ______________________________________________________ 48
8. Sodium Valproate ____________________________________________________________ 51
9a. Care Planning agreement __________________________________________________ 53
9b. Care planning content _____________________________________________________ 57
10. School Individual Health Care Plan _________________________________________ 60
Additional analyses_________________________________________________________________________ 63
Accuracy of Diagnosis _________________________________________________________ 63
First Paediatric Assessment ___________________________________________________ 63
Treatment ____________________________________________________________________ 65
Investigations _________________________________________________________________ 68
Professional input _____________________________________________________________ 70

3
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Introduction

This report focuses on clinical data from Epilepsy12 ‘cohort 5’, which includes children and
young people who had their ﬁrst paediatric assessment for a paroxysmal episode(s) between 1
December 2021 and 30 November 2022. Epilepsy12 processes data relating to the care provided to
children and young people during the ﬁrst 12 months following the ﬁrst assessment. Clinical data
was downloaded from the online data platform on 18 January 2024, following the data
submission deadline. The 2024 annual report and accompanying outputs can be found here.

Data has been presented here at national (England and Wales combined), country and 2 types
of regional levels; NHS England regions and Organisation of Paediatric Epilepsy Networks in the
UK (OPEN UK).
The OPEN UK Regional Paediatric Epilepsy Networks are named below. The abbreviated regional
network names appear in the regional network results in this report. The Scottish and Irish OPEN
UK regions have not been listed below, as the audit currently only covers England and Wales.
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
ORENG
Oxford Region Epilepsy Interest Group
PENNEC
Paediatric Epilepsy network for the North East and Cumbria
SETPEG
South East Thames Paediatric Epilepsy Group
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

The NHS England (NHSE) regions are named below.
EoE
East of England
London
London
Midlands
Midlands
NEY
North East and Yorkshire
NW
North West
SE
South East
SW
South West
Note: Asterisks (*) have been used to mask/supress data where either the numerator and/or
denominator are less than 3, but not 0. This is in line with the RCPCH data disclosure risk
management policy.

4
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Participation, Case ascertainment and
data completeness

Participation
There are 138 Health Boards and
Trusts registered in Epilepsy12 in
cohort 5 (Round 4). This number
has varied across the 5 cohorts
due to Trust mergers. 84.8%
(117/138) Health Boards and
Trusts had at least one child or
young person allocated to
cohort 5. 78.2% (108/138) of
Health Boards and Trusts
submitted clinical data by
completing a ﬁrst year of care
record for one or more children and
young people in cohort 5. Participation
increased in cohort 5 compared to
cohort 4.

Case Ascertainment
Figure 2 shows the pathway by which children and young people are registered into the audit,
allocated to a discrete cohort, and included in the ﬁnal dataset used in annual analyses. These
ﬁgures reﬂect the data at the point of download from the online platform.

Figure 2: Consort diagram of audit registrations and inclusion in cohort 5, as at 18 January 2024
Figure 1: Percentage of Trusts and Health Boards
that submitted clinical audit data in Rounds 3 and 4.

Completed registration and veriﬁcation
forms and allocated to cohort 5 (n = 7314)
Completed First year of Care form (n = 6322)
Diagnosed with Epilepsy (n = 2212)
Incomplete First Year of Care form (n = 992)
Not diagnosed with Epilepsy (n = 4110)
Included
76%
71%
73%
74%
78%
0%
20%
40%
60%
80%
100%
Round 3,
Cohort 1
Round 3,
Cohort 2
Round 3,
Cohort 3
Round 4,
Cohort 4
Round 4,
Cohort 5
Participation

5
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Data completeness
Table 1: Percentage of children and young people registered to cohort 5 with a ﬁrst year of care
form completed.

England and
Wales
England
Wales
Number of children and young
people in cohort 5
7250
6969
281
Number of children and young
people in cohort 5 with ﬁrst year
of care form completed
6322/7250 (87.2%)
6067/6969 (87.1%)
255/281 (90.7%)

Number with epilepsy
2212/6322 (35.0%)
2074/6067 (34.2%)
138/255 (54.1%)

Number without epilepsy
4110/6322 (65.0%)
3993/6067 (65.8%)
117/255 (45.9%)

A total of 7314 children and young were registered and veriﬁed in cohort 5 before the download
date. 60 (<1%) of these children and young people were excluded from the audit as the NHS
numbers recorded were invalid. 87% (6322/7250) had ﬁrst year of care forms completed, locked
and submitted. 2212 (35%) children and young people had a new diagnosis of epilepsy. Figure 3
shows that data completeness has increased in cohort 5 from previous years, including pre-
pandemic levels.

Figure 3: Data completeness in Round 3 and Round 4.
Figure 4 shows the percentage of children and young people in cohort 5 with a completed ﬁrst
year of care form by 18th January 2024. Each Health Board and Trust is represented by a vertical
bar in order of the percentage score. This does not include Health Boards and Trusts that
submitted had no patients registered and veriﬁed in cohort 5
Of the 117 Health Boards and Trusts that had at least one patient allocated to Cohort 5, 26.5%
(31/117) of Health Boards and Trusts had ascertainment below the England and Wales average,
and 29.9% (35/117) had 100% data completeness.
71%
61%
79%
85%
86%
0%
20%
40%
60%
80%
100%
Round 3,
Cohort 1
Round 3,
Cohort 2
Round 3,
Cohort 3
Round 4,
Cohort 4
Round 4,
Cohort 5
Percentage with completed first
year of care forms

6
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5

Figure 4: Percentage of children and young people with their ﬁrst year of care form submitted
and locked by Health Boards and Trusts in cohort 5.

0%
20%
40%
60%
80%
100%
Health Board/Trust
Cohort 5 National Performance

7
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Diagnostic Status
Table 2 shows the diagnostic status of children and young people in cohort 5 in the ﬁrst year of
care in England and Wales combined. 35% (2212/6322) of children and young people were
diagnosed with epilepsy in cohort 5. This is comparable with cohort 4, where the proportion was
35% (2324/.6564) with epilepsy. 34% (2147/6322) had two or more epileptic episodes more than 24
hours apart and 1% (65/6322) were diagnosed with epilepsy for other reasons.
Table 2: The diagnostic status of patients with and without epilepsy in cohort 5 in England and
Wales.
Diagnostic Status
England and
Wales
England
Wales
Epilepsy

Epilepsy: 2 or more epileptic
episodes more than 24 hours
apart
34.0% (2147/6322)
33.1% (2009/6067)
54.1% (138/255)
Epilepsy: Other reason
1.0% (65/6322)
1.1% (65/6067)
0.0% (0/255)
Not epilepsy

Not epilepsy: Single epileptic
episode
2.5% (156/6322)
2.4% (148/6067)
3.1% (8/255)
Not epilepsy: Cluster of epileptic
episodes within 24 hours
1.0% (63/6322)
1.0% (63/6067)
0.0% (0/255)
Non-epileptic episodes
40.9% (2584/6322)
41.3% (2506/6067)
30.6% (78/255)
Uncertain episodes
20.7% (1307/6322)
21.0% (1276/6067)
12.2% (31/255)

Figure 5: Diagnostic status by cohort in England and Wales across Round 3 and 4.
34%
34%
36%
35%
35%
5%
4%
4%
3%
3%
38%
43%
40%
40%
41%
23%
19%
20%
22%
21%
0%
20%
40%
60%
80%
100%
Round 3,
Cohort 1
Round 3,
Cohort 2
Round 3,
Cohort 3
Round 3,
Cohort 4
Round 3,
Cohort 5
Epilepsy
Single epileptic episode (or cluster)
Non-epileptic episodes
Uncertain episodes

8
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Table 3 describes the children and young people who had recorded seizure episodes, but were
not diagnosed with epilepsy.
Only those children and young people with epilepsy, indicated by a recorded diagnostic status of
‘Epilepsy: 2 or more epileptic episodes more than 24 hours apart’ or ‘Epilepsy: Other reason’, were
included in further analyses – this was 2212 children and young people in cohort 5.
Table 3: Percentage of children and young people with non-epileptic seizure types of those with
only non-epileptic episodes indicated in cohort 5 in England and Wales. Note, that the totals do
not add up, as more than one episode type could be recorded.
Non-epileptic episode type
England and
Wales
England
Wales
Syncope and Anoxic Seizures
12.3% (319/2584)
12.5% (312/2506)
9.0% (7/78)
Behavioural, Psychological and
Psychiatric Disorders
37.7% (975/2584)
37.6% (943/2506)
41.0% (32/78)
Sleep related conditions
3.5% (91/2584)
3.4% (85/2506)
7.7% (6/78)
Paroxysmal movement disorders
7.9% (203/2584)
8.1% (203/2506)
0.0% (0/78)
Migraine associated disorder
1.8% (47/2584)
*
*
Miscellaneous events
5.6% (145/2584)
5.7% (142/2506)
3.8% (3/78)
Other
31.8% (823/2584)
31.7% (794/2506)
37.2% (29/78)

9
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Description of cohort
Demographics
Table 4 describes the georgical distribution of children and young people with epilepsy across
England and Wales. 93.8% (2074/2212) were under the care of Trusts in England, and 6.2%
(138/2212) in Welsh Health Boards. Geographical distributions ranged from 7.7% (East of England)
to 20.2% (North East and Yorkshire) between NHS England Regions, and from 2.9% (WPNN) to
11.9% (NTPEN) between OPEN UK regions.
Table 4: Percentage of children and young people with epilepsy with a completed ﬁrst year of
care form by region in cohort 5.
Geographic Region
Percentage
Country

England
93.8% (2074/2212)
Wales
6.2% (138/2212)
NHS England Region

East of England
7.7% (159/2074)
London
18.5% (383/2074)
Midlands
18.0% (365/2074)
North East and Yorkshire
20.2% (419/2074)
North West
14.2% (294/2074)
South East
12.5% (260/2074)
South West
9.4% (194/2074)
OPEN UK Region

BRPNF
4.6% (101/2212)
CEWT
5.7% (126/2212)
EPEN
7.1% (158/2212)
EPIC
7.5% (166/2212)
NTPEN
11.9% (263/2212)
NWEIG
9.7% (214/2212)
ORENG
8.0% (178/2212)
PENNEC
6.5% (144/2212)
SETPEG
5.4% (119/2212)
SWEP
5.0% (111/2212)
SWIPE
4.7% (103/2212)
SWTPEG
8.0% (178/2212)
The remaining chapters of this report focus on the 2212 children and young people in cohort
5 with a conﬁrmed new epilepsy diagnosis and ﬁrst year of care form. 'Epilepsy' is
indicated by a recorded diagnostic status of ‘Epilepsy: 2 or more epileptic episodes more than
24 hours apart’ or ‘Epilepsy: Other reason’.

10
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
TEN
5.2% (115/2212)
WPNN
2.9% (64/2212)
YPEN
7.8% (172/2212)

Tabel 5 shows the demographic characteristics of this cohort. 55.0% (1216/2212) of children and
young people with epilepsy in cohort 5 were male, which is consistent with previous cohorts,
where the proportion was 57.1% (1326/2324) in cohort 4.
Deprivation quintile was derived by matching home postcodes to the English (IMD, 2019) and
Welsh (WIMD, 2019) indices of multiple deprivation data. 144 (7%) of children and young people
could not be allocated to a deprivation quintile, because their recorded postcodes were invalid or
did not match a Lower layer Super Output Area (LSOA), and were therefore excluded from all
deprivation analyses.
The ethnicity variable was introduced to the dataset partway through the time period for data
collection for cohort 5. Children and young people who had already been entered into the audit
prior to this had their ethnicity automatically defaulted to ‘Not Known’, but this could be updated
before the submission deadline. In cohort 5, ‘Not Known’ ethnicity is indicated in 64% of children
and young people. Data completeness for ethnicity is projected to improve in future cohorts.
Table 5: Summary of the demographic characteristics of children and young people with new
diagnoses of epilepsy in cohort 5 in England and Wales.
Characteristic
England and Wales
England
Wales
Sex

Females
44.9% (993/2212)
45.0% (934/2074)
42.8% (59/138)
Male
55.0% (1216/2212)
54.8% (1137/2074)
57.2% (79/138)
Not stated
0.1% (3/2212)
0.1% (3/2074)
0.0% (0/138)
Age

Mean
7.2
7.2
7.1
Median (Interquartile range)
7 (3-11)
7 (3-11)
6.5 (3-12)
Range
0-17
0-17
0-17
Ethnicity

White (British)
25.9% (574/2212)
24.4% (507/2074)
48.6% (67/138)
White (Irish)
*
*
*
White (Other)
1.5% (33/2212)
1.6% xx-xxxx-xxxx)
0.0% (0/138)
Black (Caribbean)
0.1% (3/2212)
0.1% (3/2074)
0.0% (0/138)
Black (African)
0.9% (19/2212)
0.9% (19/2074)
0.0% (0/138)
Black (Other)
0.1% (3/2212)
0.1% (3/2074)
0.0% (0/138)
Asian (Indian)
0.3% (6/2212)
0.3% (6/2074)
0.0% (0/138)
Asian (Pakistani)
2.2% (49/2212)
2.4% (49/2074)
0.0% (0/138)
Asian (Bangladeshi)
0.4% (8/2212)
0.4% (8/2074)
0.0% (0/138)
Asian (Other)
0.5% (12/2212)
0.6% (12/2074)
0.0% (0/138)

11
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Mixed (White and Black
Caribbean)
0.5% (12/2212)
0.6% (12/2074)
0.0% (0/138)
Mixed (White and Black
African)
0.4% (9/2212)
*
*
Mixed (White and Asian)
0.6% (14/2212)
0.7% (14/2074)
0.0% (0/138)
Mixed (Other)
0.4% (8/2212)
0.4% (8/2074)
0.0% (0/138)
Other (Chinese)
*
*
*
Other (Any other ethnic group)
1.1% (24/2212)
*
*
Prefer not to say
0.5% (11/2212)
0.5% (11/2074)
0.0% (0/138)
Not indicated
64.4% (1425/2212)
65.4% (1356/2074)
50.0% (69/138)
Deprivation

Most deprived
24.2% (536/2212)
23.9% (496/2074)
29.0% (40/138)
Second most deprived
22.7% (502/2212)
22.8% (472/2074)
21.7% (30/138)
Third least deprived
16.6% (367/2212)
16.8% (348/2074)
13.8% (19/138)
Second least deprived
14.7% (325/2212)
14.8% (306/2074)
13.8% (19/138)
Least deprived
15.3% (338/2212)
15.3% (317/2074)
15.2% (21/138)
Not indicated
6.5% (144/2212)
6.5% (135/2074)
6.5% (9/138)

Figure 6 shows the age and sex of patients in cohort 5. The children and young people’s ages are
given in whole years, or in months for those under 2 years, giving their age at their ﬁrst
assessment. 3 children and young people in cohort 5 had unknown or unspeciﬁed gender.
Of those below 1 year of age at ﬁrst paediatric assessment, 12.6% (26/206) had their ﬁrst
paediatric assessment in their ﬁrst month of life.

12
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5

Figure 6 – Distribution of age and sex for children and young people at ﬁrst paediatric
assessment in cohort 5 in England and Wales.
Figure 7 shows that there are a higher proportion of children and young people in cohort 5 who
indicated ‘White’ ethnicity, compared to other ethnicity categories. ‘Not Known’ ethnicity was
indicated in 64% of children and young people.
•
This is the ﬁrst year that ethnicity data was collected as part of the Epilepsy12 dataset, and
the data ﬁeld was introduced part way through the cohort 5 data collection time period.
117
53
84
96
72
79
73
86
93
68
66
61
54
61
74
53
26
89
62
57
64
46
56
79
68
59
56
67
48
48
55
60
53
26
0
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16+
Female
Male

13
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5

Figure 7 – Distribution of ethnicity for children and young people with epilepsy at ﬁrst paediatric
assessment in cohort 5. Please note that the ethnicity variable was added to the dataset part way
through the audit year. Completed registration forms had the ethnicity automatically defaulted
to ‘Not Known’.

Figure 8 shows that a high proportion of children and young people in cohort 5 are living in areas
in the most deprived quintile of England, with wide variation between NHS England regions. This
is consistent with Round 4.

27.5%
1.1%
3.4%
1.9%
1.1%
64.9%
0%
10%
20%
30%
40%
50%
60%
70%
White (British,
Irish, Other)
Black
(Caribbean,
African, Other)
Asian (Pakistani,
Bangladeshi,
Other)
Mixed
Other
Not stated
Ethnicity
12%
4%
42%
37%
26%
17%
16%
29%
24%
24%
16%
16%
25%
21%
32%
21%
22%
23%
22%
15%
11%
12%
17%
22%
25%
14%
17%
14%
22%
13%
14%
14%
13%
16%
14%
15%
18%
32%
13%
9%
15%
11%
15%
15%
15%
10%
10%
4%
4%
7%
7%
7%
7%
7%
0%
20%
40%
60%
80%
100%
SW
SE
NW
NEY
Midlands
London
EoE
Wales
England
Most deprived
Second most deprived
Third least deprived
Second least deprived
Least deprived
Not indicated

14
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Multiaxial diagnosis
This section describes the seizure history (Table 6), seizure cause (Table 7), electroclinical
syndrome (Table 8) and epileptic seizure types (Table 9 and 10) for children and young people
with epilepsy in cohort 5.
Most children and young people had no family history of epilepsy, and did not have any prior
history of neonatal, febrile, or acute seizures in cohort 5, which is consistent with cohorts 1-4.
Table 6: Percentage of children and young people with epilepsy with a family history of epilepsy
or previous seizures in cohort 5 in England and Wales.
Prior History
England and
Wales
England
Wales
Family history of epilepsy

Yes
23.1% (510/2212)
23.0% (476/2074)
24.6% (34/138)
No
76.9% (1702/2212)
77.0% (1598/2074)
75.4% (104/138)
Uncertain
0.0% (0/2212)
0.0% (0/2074)
0.0% (0/138)
History of neonatal seizures

Yes
3.1% (68/2212)
*
*
No
91.5% (2024/2212)
91.2% (1891/2074)
96.4% (133/138)
Uncertain
5.4% (120/2212)
*
*
History of febrile seizures

Yes
12.1% (268/2212)
*
*
No
82.1% (1816/2212)
81.8% xx-xxxx-xxxx)
87.0% (120/138)
Uncertain
5.8% (128/2212)
*
*
History of acute asymptomatic
seizures

Yes
12.7% (282/2212)
*
*
No
82.7% (1830/2212)
81.9% xx-xxxx-xxxx)
94.9% (131/138)
Uncertain
4.5% (100/2212)
*
*

In cohort 5, 3.6% (79/2212) of children and young people with epilepsy had a genetic cause of
epilepsy indicated, 5.6% (123/2212) had a structural epilepsy cause, 0.4% (9/2212) had an
infectious cause, 0.5% (11/2212) had a metabolic cause, and 0.1% had an immune cause. 12.0%
(266/2212) had their cause recorded as unknown. All epilepsy causes which were recorded for at
least one child or young person in cohort 5 are listed in Table 7.
Causes that were not indicated for any children and young people with epilepsy in cohort 5 are
omitted from this list. A complete list of epilepsy causes within the Epilepsy12 data collection
platform can be found in the clinical audit dataset.

15
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Table 7: Percentage of children and young people with epilepsy with each cause recorded in
cohort 5 in England and Wales. Note, the total percentages may exceed 100% as more than one
cause could be entered per child/young person.
Cause of epilepsy; % (n/N)
England and
Wales
England
Wales
Structural
5.6% (123/2212)
5.5% (115/2074)
5.8% (8/138)
Tuberous Sclerosis
8.1% (10/123)
*
*
Sturge Weber
3.3% (4/123)
*
*
Focal cortical dysplasia
9.8% (12/123)
10.4% (12/115)
0.0% (0/8)
Hypothalamic Hamartoma
*
*
*
Low grade tumour
2.4% (3/123)
2.6% (3/115)
0.0% (0/8)
Tumour (other)
6.5% (8/123)
*
*
Malformations of Cortical
Development
19.5% (24/123)
*
*
Vascular (eg. Arterial ischaemic
stroke, venous ischaemia, cerebral
haemorrhage)
27.6% (34/123)
*
*
Traumatic brain injury
9.8% (12/123)
10.4% (12/115)
0.0% (0/8)
Not stated
12.2% (15/123)
*
(
Genetic
3.6% (79/2212)
3.5% (72/2074)
5.1% (7/138)
Dravet Syndrome
*
*
*
Glucose Transporter Defect
0.0% (0/79)
0.0% (0/72)
0.0% (0/7)
Angelman Syndrome
*
*
*
Rett Syndrome
5.1% (4/79)
*
*
Chromosomal Abnormality
22.8% (18/79)
*
*
Gene Abnormality
68.4% (54/79)
68.1% (49/72)
71.4% (5/7)
Infectious
0.4% (9/2212)
0.4% (9/2074)
0.0% (0/138)
Metabolic
0.5% (11/2212)
*
*
Mitochondrial disorder
*
*
*
Neuronal Ceroid Lipofuscinosis
(Batten Disease)
*
*
*
Disorder of pyridoxine/pyridoxal
phosphate metabolism
*
*
*
Disorder of biotin metabolism
0.0% (0/11)
0.0% (0/10)
*
Disorder of creatine metabolism
0.0% (0/11)
0.0% (0/10)
*
Disorder of amino acid
0.0% (0/11)
0.0% (0/10)
*
Disorder of urea cycle
0.0% (0/11)
0.0% (0/10)
*
Disorder of pyrimidine and purine
0.0% (0/11)
0.0% (0/10)
*
Disorder of cholesterol
0.0% (0/11)
0.0% (0/10)
*
Other neurometabolic disorder
63.6% (7/11)
60.0% (6/10)
*
Immune
0.1%
*
*

16
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Rasmussen Encephalitis
*
*
*
Antibody mediated
*
*
*
Not Known
12.0% (266/2212)
12.2% (253/2074)
9.4% (13/138)
Not Recorded
78.0% (1726/2212)
78.0% (1617/2074)
79.0% (109/138)

767 children and young people diagnosed with epilepsy in cohort 5 had an International League
Against Epilepsy (ILAE, 2022) classiﬁed epilepsy syndrome. This ﬁgure excludes records where
‘unclassiﬁed syndrome’ or ‘no syndrome indicated’ were selected, as well as records where this
question was not answered. ILAE epilepsy syndromes are shown in Table 8, where the syndrome
was recorded for at least one child or young person in cohort 5.
Table 8: Summary of electroclinical syndromes in children and young people with epilepsy in
cohort 5 in England and Wales. Electroclinical syndromes that were not indicated for any children
and young people with epilepsy in cohort 5 are omitted from this list. Note, the total percentages
may exceed 100% as more than one syndrome could be entered per child/young person.
Electroclinical Syndrome
England and
Wales
England
Wales
No epilepsy syndrome stated
63.3% (1401/2212)
64.2% (1331/2074)
50.1% (70/138)
'Unclassiﬁed syndrome'
2.0% (44/2212)
2.0% (41/2074)
2.2% (3/138)
‘ILAE Classiﬁed Syndrome
34.5% (764/2212)
33.8% (702/2074)
47.1% (65/138)
(Benign) Childhood epilepsy with
centrotemporal spikes (BECTS)
(benign Rolandic epilepsy)
5.8% (129/2212)
5.9% (123/2074)
4.3% (6/138)
(Benign) Myoclonic epilepsy in
infancy
0.1% (3/2212)
*
*
Autosomal dominant nocturnal
frontal lobe epilepsy
*
*
*
Benign familial neonatal seizures
0.1% (3/2212)
0.1% (3/2074)
0.0% (0/138)
Benign infantile seizures
0.1% (3/2212)
0.1% (3/2074)
0.0% (0/138)
Childhood absence epilepsy (CAE)
6.4% (142/2212)
6.0% (125/2074)
12.3% (17/138)
Childhood epilepsy with occipital
paroxysms
0.2% (4/2212)
0.2% (4/2074)
0.0% (0/138)
Dravet syndrome (severe myoclonic
epilepsy of/in infancy of SMEI)
*
*
*
Early myoclonic encephalopathy
0.2% (4/2212)
0.2% (4/2074)
0.0% (0/138)
Epilepsy with generalised tonic-
clonic seizures only (Epilepsy with
generalised tonic clonic seizures on
awakening)
1.9% (41/2212)
*
*
Epilepsy with myoclonic absences
0.3% (6/2212)
0.3% (6/2074)
0.0% (0/138)
Epilepsy with myoclonic astatic
seizures (Doose syndrome)
(Myoclonic astatic epilepsy)
0.4% (8/2212)
0.4% (8/2074)
0.0% (0/138)
Eyelid myoclonia with absences
0.3% (6/2212)
0.2% (4/2074)
1.4% (2/138)

17
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Familial focal epilepsy with variable
foci
*
*
*
Frontal lobe epilepsy
0.7% (16/2212)
*
*
Generalised epilepsies with febrile
seizures plus (FS+)
0.5% (11/2212)
0.5% (11/2074)
0.0% (0/138)
Idiopathic focal epilepsy of
childhood
0.9% (21/2212)
1.0% (21/2074)
0.0% (0/138)
Juvenile absence epilepsy (JAE)
3.3% (73/2212)
3.3% (68/2074)
3.6% (5/138)
Juvenile myoclonic epilepsy (JME)
2.9% (64/2212)
2.8% (59/2074)
3.6% (5/138)
Landau-Kleffner syndrome
*
*
*
Lennox-Gastaut syndrome
*
*
*
Occipital lobe epilepsy
0.4% (9/2212)
*
*
Panayiotopoulos syndrome (Early
onset (benign) childhood occipital
epilepsy)
0.6% (13/2212)
0.6% (13/2074)
0.0% (0/138)
Parietal lobe epilepsy
0.2% (4/2212)
0.2% (4/2074)
0.0% (0/138)
Rasmussen's encephalitis (chronic
progressive epilepsia partialis
continua) (Kozhevnikov syndrome)
*
*
*
Reﬂex epilepsies
*
*
*
Temporal lobe epilepsy
1.4% (30/2212)
1.1% (23/2074)
5.1% (7/138)
West syndrome
1.7% xx-xxxx-xxxx)
*
*
Other
6.1% (136/2212)
5.8% (121/2074)
10.9% (15/138)

94.8% (2097/2212) of children and young people with epilepsy had an ILAE seizure formulation
within the ﬁrst year of care in cohort 5, deﬁned as having selected an ILAE epileptic seizure
classiﬁcation, including ‘unclassiﬁed’ and ‘unknown onset’. Records where only non-epileptic
seizures or where it was uncertain in seizures were epileptic are not included in this ﬁgure.
95% (2105/2212) of children and young people with epilepsy had only one seizure type, and the
most common seizure type recorded was generalised onset (52.9%), with the most common
presentation being generalised tonic-clonic seizures. 0.6% (13/2212) of children and young people
with epilepsy had non-epileptic seizures, while 7.6% xx-xxxx-xxxx) had seizures of unknown onset.
Table 9: Percentage of children and young people with epilepsy with each seizure type in cohort
5 in England and Wales. Note, the total percentages may exceed 100% as more than one seizure
episode type could be entered per child/young person.
Episode type; % (n/N)
England and
Wales
England
Wales
Number of children and young
people with ILAE seizure
classiﬁcation at ﬁrst year
94.8% (2097/2212)
94.8% (1967/2074)
94.2% (130/138)
Number of seizure onset types
(epileptic only)

1 epileptic seizure types
92.6% (2049/2212)
92.7% (1922/2074)
92.0% (127/138)

18
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
2 epileptic seizure types
2.2% (48/2212)
2.2% (45/2074)
2.2% (3/138)
3 or more epileptic seizure types
0.0% (0/2212)
0.0% (0/2074)
0.0% (0/138)
Focal onset
33.4% (738/2212)
33.1% (686/2074)
37.7% (52/138)
Laterality
27.0% (199/738)
27.4% (188/686)
21.2% (11/52)
Left
13.7% (101/738)
13.8% (95/686)
11.5% (6/52)
Right
14.4% (106/738)
14.7% (101/686)
9.6% (5/52)
Motor manifestations
53.4% (394/738)
52.3% (359/686)
67.3% (35/52)
Atonic
2.8% (21/738)
*
*
Clonic
14.4% (106/738)
14.7% (101/686)
9.6% (5/52)
Spasms
*
*
*
Hyperkinetic
*
*
*
Myoclonic
2.4% (18/738)
2.6% (18/686)
0.0% (0/52)
Tonic
13.4% (99/738)
13.6% (93/686)
11.5% (6/52)
Focal to bilateral tonic-

clonic
30.9% (228/738)
29.4% (202/686)
50.0% (26/52)
Non-motor manifestations
45.8% xx-xxxx-xxxx)
45.9% (315/686)
44.2% (23/52)
Automatisms
7.7% (57/738)
*
*
Impaired Awareness
39.4% (291/738)
39.4% (270/686)
40.4% (21/52)
Gelastic
*
*
*
Autonomic
4.2% (31/738)
4.2% (29/686)
3.8% (2/52)
Behavioural Arrest
10.2% (75/738)
10.3% (71/686)
7.7% (4/52)
Cognitive
1.4% (10/738)
1.5% (10/686)
0.0% (0/52)
Emotional
*
*
*
Sensory
3.9% (29/738)
3.8% (26/686)
5.8% (3/52)
EEG Findings
27.2% (201/738)
27.3% (187/686)
26.9% (14/52)
Centrotemporal
11.0% (81/738)
11.1% (76/686)
9.6% (5/52)
Temporal
8.3% (61/738)
8.0% (55/686)
11.5% (6/52)
Frontal
4.3% (32/738)
*
*
Parietal
1.6% (12/738)
*
*
Occipital
4.3% (32/738)
*
*
Other
4.2% (31/738)
*
*
Generalised Onset
52.9% (1170/2212)
52.8% (1096/2074)
53.6% (74/138)
Tonic-clonic
56.7% (663/1170)
57.2% (627/1096)
50.0% (37/74)
Clonic
*
*
*
Tonic
2.8% (33/1170)
2.7% (30/1096)
4.1% (3/74)
Myoclonic
7.2% (84/1170)
7.0% (77/1096)
9.5% (7/74)
Myoclonic-tonic-clonic
1.3% (15/1170)
1.4% (15/1096)
0.0% (0/74)
Myoclonic-atonic
0.9% (11/1170)
1.0% (11/1096)
0.0% (0/74)
Atonic
*
*
*
Epileptic Spasms
3.6% (42/1170)
3.6% (39/1096)
4.1% (3/74)
Typical absence
27.4% (321/1170)
27.2% (298/1096)
31.1% (23/74)
Atypical absence
5.6% (66/1170)
*
*
Myoclonic absence
0.9% (10/1170)
0.9% (10/1096)
0.0% (0/74)
Absence with eyelid myoclonia
1.5% (17/1170)
*
*
Other
1.6% (19/1170)
*
*
Unknown epileptic onset
7.6% xx-xxxx-xxxx)
7.8% (161/2074)
5.1% (7/138)
Tonic-clonic
58.9% (99/168)
59.6% (96/161)
42.9% (3/7)

19
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Epileptic spasms
9.5% (16/168)
*
*
Behaviour arrest
21.4% (36/168)
*
*
Other
13.7% (23/168)
14.3% (23/161)
0.0% (0/7)
Unclassiﬁed epileptic onset
3.1% (69/2212)
3.3% (69/2074)
0.0% (0/138)
Non-epileptic onset
0.6% (13/2212)
0.6% (13/2074)
0.0% (0/0)
Syncope and anoxic seizures
*
*
*
Behavioural, psychological and
psychiatric disorders
30.1% (4/13)
30.1% (4/13)
0.0% (0/0)
Sleep related conditions
0.0% (0/13)
0.0% (0/13)
0.0% (0/0)
Paroxysmal movement disorders
*
*
*
Migraine associated disorders
0.0% (0/13)
0.0% (0/13)
0.0% (0/0)
Miscellaneous events
0.0% (0/13)
0.0% (0/13)
0.0% (0/0)
Other
53.8% (7/13)
53.8% (7/13)
0.0% (0/0)
Uncertain onset
6.0% (132/2212)
5.9% (123/2074)
6.5% (9/138)

Figure 9 shows that the percentage of children and young people in England and Wales with
generalised seizures has increased between cohort 1 and cohort 5.

Figure 9: Percentage of children and young people with epilepsy with each seizure type, by
cohort in Round 3 and 4.
In Round 4 cohort 5, 64.9% (1436/2212) of children and young people with epilepsy had
convulsive seizures, and 35.1% (776/2212) did not have convulsive seizures. This is consistent with
previous cohorts.
18.4% (408/2212) had prolonged generalised seizures and 10.1% (223/2212) had prolonged focal
seizures. These are seizures with a duration of more than ﬁve minutes or successive seizures
45%
33%
11%
4%
47%
35%
9%
4%
44%
36%
12%
5%
52%
34%
8%
3%
53%
33%
8%
3%
0%
10%
20%
30%
40%
50%
60%
Generalised onset
Focal onset
Unknown onset
Unclassified
Cohort 1
Cohort 2
Cohort 3
Cohort 4
Cohort 5

20
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
continuing for more than ﬁve minutes. This is an increase compared to 15.7% (364/2322) and
9.6% (223/2322) respectively in cohort 4.
Table 10: Percentage of children and young people with epilepsy with convulsive and prolonged
seizures in cohort 5 in England and Wales.

England and Wales
England
Wales
Convulsive seizures
64.9% (1436/2212)
65.0% (1349/2074)
63.0% (87/138)
Prolonged generalised convulsive seizures

Yes
18.4% (408/2212)
*
*
No
77.7% (1718/2212)
77.5% (1608/2074)
79.7% (110/138)
Uncertain
3.9% (86/2212)
*
*
Prolonged focal convulsive seizures

Yes
10.1% (223/2212)
*
*
No
85.2% (1884/2212)
85.2% (1767/2074)
84.8% (117/138)
Uncertain
4.7% (105/2212)
*
*

21
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Mental health and neurodisability
Table 11 describes information collected around the neurodevelopmental conditions/learning
disabilities and mental health conditions for children and young people with epilepsy in cohort 5.
The terms global developmental delay, intellectual disability, and learning disability have been
grouped into a single category here for ease of reporting. We acknowledge that there is variation
in these deﬁnitions, and use of these terms across the world, and that they may be applied to
different age groups. We recognise that ‘learning difﬁculties’ are different to ‘learning disabilities’
and refer to a group of conditions.
Table 11: Percentage of children and young people with epilepsy with neurodevelopmental
conditions/learning disabilities and mental health conditions in cohort 5 in England and Wales.
Note, the total percentages may exceed 100% as more than one condition could be entered per
child/young person.

England and
Wales
England
Wales
Neurodevelopmental conditions
22.9% (506/2212)
23.1% (480/2074)
18.8% (26/138)
Autistic Spectrum Disorder
9.4% (209/2212)
9.5% (197/2074)
8.7% (12/138)
Cerebral Palsy
2.2% (49/2212)
2.1% (44/2074)
3.6% (5/138)
Neurodegenerative disease or
condition
0.4% (8/2212)
*
*
An identiﬁed chromosomal disorder
with a neurological or developmental
component
1.6% (35/2212)
*
*
Attention deﬁcit hyperactivity disorder
2.3% (50/2212)
2.2% (46/2074)
2.9% (4/138)
Intellectual disability/global
developmental delay/’learning
disability’
6.8% (151/2212)
6.9% (143/2074)
5.8% (8/138)

Mild
23.8% (36/151)
*
*

Moderate
45.7% (69/151)
46.2% (66/143)
37.5% (3/8)

Profound
5.3% (8/151)
*
*

Severe
25.2% (38/151)
24.5% (35/143)
37.5% (3/8)
Dyspraxia
0.1% (3/2212)
0.1% (3/2074)
0.0% (0/138)
Dyslexia
0.4% (9/2212)
0.4% (9/2074)
0.0% (0/138)
Speech disorder
1.3% (28/2212)
*
*
Other learning difﬁculty
2.4% (54/2212)
*
*
Diagnosed mental health condition
6.1% (135/2212)
6.2% (128/2074)
5.1% (7/138)
Anxiety disorder
2.5% (56/2212)
*
*
Emotional/behavioural
0.7% (15/2212)
0.7% (15/2074)
0.0% (0/138)
Mood disorder
0.7% (15/2212)
*
*
Self-harm
0.2% (4/2212)
0.2% (4/2074)
0.0% (0/138)
Other
1.6% (36/2212)
1.6% xx-xxxx-xxxx)
2.2% (3/138)
Not stated
0.7% (15/2212)
*
*

22
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
6.8% (151/2212) of children and young people with epilepsy in cohort 5 had an intellectual
disability/global developmental delay/learning disability indicated, which is an increase from 6.4%
(149/2324) in cohort 4.
5.6% (123/2212) of children and young people with epilepsy had an identiﬁed mental health
condition recorded in cohort 5, which is comparable to 5.1% (119/2324) in cohort 4. Figure 10
shows the increase in the percentage of children and young people with epilepsy with a
diagnosed mental health condition between Round 3, cohort 1 and Round 4, cohort 5.
The responses that were entered when the ‘other’ diagnosed mental health condition option was
selected are included below:
•
Challenging Behaviour
•
?ASD/ADHD
•
Patient has ASD with high anxiety
•
temper tantrums, isolated sleep problems
•
eating disorder
•
anxiety
•
suffered with sleep paralysis drug involvement multiple family issues
•
Challenging behaviour
•
Unhappiness with way school managing her seizures
•
undergoing assessment, history of self harm, non-compliance, oppositional deﬁance
•
Anorexia nervosa
•
Eating disorder
•
eating disorder
•
asd
•
ASD
•
Possible eating disorder, awaiting CAMHS referral- referred by primary care
•
Symptoms of traumatic anxiety Low mood
•
Challenging behaviour
•
Possible Autism
•
Gender dysphoria
•
ASD
•
disordered eating
•
Food refusal- eating disorder team involved
•
Autism
•
Autism ADHD Behavioural problems and school exclusion
•
low mood
•
Autism and challenging behaviour
•
has LD , autism and adhd
•
waiting for assessment of ADHD
•
pathological demand avoidance
•
anxiety, low mood, dysregulation, non-verbal, displays of physical behaviours
•
Anxiety related to autism
•
Autism spectrum disorder
•
ADHD
•
Anorexia Nervosa
•
OCD
•
ADD

23
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
•
Emotional dysregulation
•
suicidal ideation

Figure 10: Percentage of children and young people with epilepsy with a mental health condition
between cohort 1 and cohort 5.
8.7% (128/1472) of children and young people with epilepsy and aged 5 years and older also had
an identiﬁed mental health condition(s) by their ﬁrst year of care in England and Wales in cohort
5.
4.6%
4.0%
4.1%
5.1%
5.6%
0%
2%
4%
6%
8%
10%
Round 3,
Cohort 1
Round 3,
Cohort 2
Round 3,
Cohort 3
Round 3,
Cohort 4
Round 3,
Cohort 5

24
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Key Performance Indicators
In cohort 5, Epilepsy12 has identiﬁed 10 Key Performance Indicator (KPI) measures which are
derived from national guidelines and recommendations. These are detailed in the Round 4
methodology overview.
This chapter will explore the cohort 5 national and regional performance data for each of the 10
KPIs in turn, including the variation in care between demographic population groups. As before,
this section only includes the 2212 children and young people with a conﬁrmed new epilepsy
diagnosis and a submitted ﬁrst year of care form before the speciﬁed download date of 18
January 2024.
Figure 11 shows an overview of the 10 Epilepsy12 KPIs for England and Wales combined in Round
4, cohort 5.

39%
65%
81%
100%
61%
22%
53%
72%
37%
49%
81%
51%
0%
20%
40%
60%
80%
100%
10. School Individual Health Care Plan
9b. Care planning content
9a. Care planning agreement
8. Sodium Valproate risk discussions
7. Mental health support
6. Assessment of mental health issues
5. MRI brain scan achieved
4. ECG achieved
3b. Epilepsy Surgery referral
3a. Tertiary input
2. Epilepsy specialist nurse input
1. Input from paediatrician with expertise
within 2 weeks

25
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
1. Paediatrician with expertise in epilepsies;
input within 2 weeks
Percentage of children and young people with epilepsy, with input from a
‘paediatrician with expertise in epilepsies’ within two weeks of referral.
*The two-week timeframe was added to this KPI for cohort 5.

50.8% (1123/2212) of children and young people with epilepsy received input by a ‘consultant
paediatrician with expertise in epilepsies’ within two weeks of referral. The 2-week timeframe was
introduced to the KPI this year, and includes children and young people with input prior to their
ﬁrst paediatric assessment. This indicator ranged from 0.0% to 100.0%, with an interquartile
range of 33.3% to 69.7%.
91.6% (2077/2212) of children and young people with epilepsy received input by a ‘consultant
paediatrician with expertise in epilepsies’ within the ﬁrst year of care. This was an increase,
compared to 90.7% (2107/2324) in cohort 4.
Table 12 shows how timely access to a paediatrician with expertise is distributed between
demographic population groups and Table 13 shows the variation in access to a paediatric)ian
with expertise between England and Wales and across NHSE and OPEN UK regions. Table 14
describes the time in weeks to achieving input from a paediatrician with expertise in epilepsy
from ﬁrst referral for all children and young people with epilepsy in cohort 5.
Table 12: Percentage of children and young people with epilepsy with input by a ‘consultant
paediatrician with expertise in epilepsies’ within two weeks from referral by demographic.
Demographic Variables
England and Wales
England
Wales
Total
50.8% (1123/2212)
50.4% (1045/2074)
56.2% (78/138)
Age

< 2 years
55.8% (179/321)
*
*
2 – 4 years
48.0% (201/419)
47.8% (184/385)
50.0% (17/34)
5 – 11 years
50.9% (488/959)
50.4% (457/907)
59.6% (31/52)
12 – 15 years
48.3% (222/460)
47.7% (203/426)
55.9% (19/34)
16+ years
62.3% (33/53)
*
*
Sex

Female
52.1% (517/993)
52.1% (487/934)
50.8% (30/59)
Male
49.6% (603/1216)
48.8% (555/1137)
60.8% (48/79)
Not indicated
100.0% (3/3)
100.0% (3/3)
N/A
Ethnicity

Asian
45.3% (34/75)
45.3% (34/75)
N/A
Black
52.0% (13/25)
52.0% (13/25)
N/A
NICE Guidelines [NG217], 2022 (Statement 1.1.1) state that the
diagnosis of epilepsy in children should be established by a
specialist paediatrician with training and expertise in epilepsy and
this should be within two weeks of initial referral.
50.8%

26
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Mixed
58.1% (25/43)
*
*
White
51.2% (311/608)
48.4% (262/541)
73.1% (49/67)
Other
40.0% (10/25)
*
*
Not indicated
50.8% (730/1436)
51.4% (703/1367)
39.1% (27/69)
Deprivation

Most deprived
52.4% (281/536)
51.2% (254/496)
67.5% (27/40)
Second most deprived
48.4% (243/502)
48.1% (227/472)
53.3% (16/30)
Third least deprived
46.9% (172/367)
47.7% (166/348)
31.6% (6/19)
Second least deprived
47.4% (154/325)
46.7% (143/306)
57.9% (11/19)
Least deprived
56.5% (191/338)
56.8% (180/317)
52.4% (11/21)
Not indicated
56.9% (82/144)
55.6% (75/135)
77.8% (7/9)

Table 13: Percentage of children and young people with epilepsy with input by a ‘consultant
paediatrician with expertise in epilepsies’ within two weeks from referral by region.

Geographic Region
KPI 1. Paediatrician with expertise; input within 2 weeks
England and Wales combined
50.8% (1123/2212)
Country

England
50.4% (1045/2074)
Wales
56.5% (78/138)
NHS England Region

East of England
60.4% (96/159)
London
51.4% (197/383)
Midlands
44.4% (162/365)
North East and Yorkshire
53.2% (223/419)
North West
55.4% (163/294)
South East
44.2% (115/260)
South West
45.9% (89/194)
OPEN UK Region

BRPNF
62.4% (63/101)
CEWT
27.8% (35/126)
EPEN
60.1% (95/158)
EPIC
60.2% (100/166)
NTPEN
52.9% (139/263)
NWEIG
50.9% (109/214)
ORENG
47.2% (84/178)
PENNEC
56.9% (82/144)
SETPEG
35.3% (42/119)
SWEP
59.5% (66/111)
SWIPE
55.3% (57/103)

27
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
SWPEG
47.2% (84/178)
TEN
45.2% (52/115)
WPNN
34.4% (22/64)
YPEN
54.1% (93/172)

Figure 12: Paediatrician with expertise in epilepsies by Health Board and Trust, cohort 5. Each
participating Health Board or Trust is represented by a vertical bar in the order of the percentage
score, including those scoring 0% in this graph.
In cohort 5, 21.8% of children and young people with epilepsy waited more than 16 weeks for
input from a paediatrician with expertise.
Table 14: Time in weeks to achieving input from a paediatrician with expertise in epilepsy since
ﬁrst referral for children and young people with epilepsy in cohort 5.
Time in weeks
England and Wales
England
Wales
<2 weeks
50.8% (1123/2212)
50.4% (1045/2074)
56.5% (78/138)
2 – 4 weeks
5.5% (121/2212)
5.6% (116/2074)
3.6% (5/138)
4 – 8 weeks
10.3% (227/2212)
10.3% (213/2074)
10.1% (14/138)
8 – 12 weeks
7.0% (154/2212)
7.0% (145/2074)
6.5% (9/138)
12 – 16 weeks
4.8% (106/2212)
4.8% (100/2074)
4.3% (6/138)
16+ weeks
15.4% (340/2212)
15.5% (321/2074)
13.8% (19/138)
Input not achieved
6.4% (141/2212)
6.5% (134/2074)
5.1% (7/138)

0%
20%
40%
60%
80%
100%
Health Board/Trust
National Performance

28
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
2. Epilepsy Specialist Nurse
Percentage of children with epilepsy with input by an epilepsy specialist
nurse by ﬁrst year.

80.7% (1786/2212) of children and young people with epilepsy received input by an epilepsy
specialist nurse within the ﬁrst year of care. This was an increase compared to 77.2% (1793/2324)
in cohort 4. This indicator ranged from 0.0% to 100.0%, with an interquartile range of 75.0% to
96.9%.

Figure 13: Epilepsy specialist nurse input for Rounds 3 and 4.

Table 15 describes epilepsy specialist nurse input over time in Rounds 3 and 4. Table 16 shows
how epilepsy specialist nurse input is distributed between demographic population groups and
Table 17 shows the variation in epilepsy specialist nurse input between England and Wales and
across NHSE and OPEN UK regions.
Table 15: The percentage of children and young people with epilepsy who received input from an
epilepsy specialist nurse within the ﬁrst year of care in each cohort.

England and
Wales
England
Wales
Round 1
43.4% (658/1516)
41.6% (592/1423)
70.1% (66/93)
Round 2
55.5% (605/1090)
54.5% (555/1019)
70.4% (50/71)
Round 3, Cohort 1
69.0% (767/1112)
70.2% (738/1051)
47.5% (29/61)
Round 3, Cohort 2
73.2% (1542/2106)
73.1% (1524/2086)
90.0% (18/20)
Round 3, Cohort 3
76.2% (1505/1974)
76.7% (1471/1918)
60.7% (34/56)
Round 4, Cohort 4
77.2% (1793/2324)
76.8% (1701/2215)
84.4% (92/109)
43%
56%
69%
73%
76%
77%
81%
0%
20%
40%
60%
80%
100%
Round 1
Round 2
Round 3,
Cohort 1
Round 3,
Cohort 2
Round 3,
Cohort 3
Round 4,
Cohort 4
Round 4,
Cohort 5
NICE guidelines [NG217], 2022 (Statement 11.1.1) state that all
children and young people with epilepsy should have access to
an epilepsy specialist nurse.
80.7%

29
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Round 4, Cohort 5
80.7% (1786/2212)
80.3% (1665/2074)
87.7% (121/138)

Table 16: Percentage of children and young people with epilepsy with input by an epilepsy
specialist nurse within the ﬁrst year of care by demographic.
Demographic Variables
England and
Wales
England
Wales
Total
80.7% (1786/2212)
80.3% (1665/2074)
87.7% (121/138)
Age

< 2 years
77.6% (249/321)
*
*
2 – 4 years
77.3% (324/419)
76.9% (296/385)
82.4% (28/34)
5 – 11 years
82.5% (791/959)
82.0% (744/907)
90.4% (47/52)
12 – 15 years
82.0% (377/460)
81.0% (345/426)
94.1% (32/34)
16+ years
84.9% (45/53)
*
*
Sex

Female
79.2% (786/993)
78.7% (735/934)
86.4% (51/59)
Male
82.0% (997/1216)
81.5% (927/1137)
88.6% (70/79)
Not Indicated
100.0% (3/3)
100.0% (3/3)
N/A
Ethnicity

Asian
74.7% (56/75)
74.7% (56/75)
N/A
Black
72.0% (18/25)
72.0% (18/25)
N/A
Mixed
88.4% (38/43)
*
*
White
82.9% (504/608)
82.4% (446/541)
86.6% (58/67)
Other
72.0% (18/25)
*
*
Not Indicated
80.2% (1152/1436)
79.8% (1091/1367)
88.4% (61/69)
Deprivation

Most deprived
83.0% (445/536)
82.1% (407/496)
95.0% (38/40)
Second most deprived
78.5% xx-xxxx-xxxx)
78.4% (370/472)
80.0% (24/30)
Third least deprived
78.5% (288/367)
78.2% (272/348)
84.2% (16/19)
Second least deprived
81.8% (266/325)
82.0% (251/306)
78.9% (15/19)
Least deprived
83.4% (282/338)
82.6% (262/317)
95.2% (20/21)
Not indicated
77.1% (111/144)
76.3% (103/135)
88.9% (8/9)

Table 17: Percentage of children and young people with epilepsy with input by an epilepsy
specialist nurse within the ﬁrst year of care by region.

Geographic Region
KPI 2. Epilepsy Specialist Nurse input
England and Wales combined
80.7% (1786/2212)
Country

England
80.3% (1665/2074)
Wales
87.7% (121/138)

30
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
NHS England Region

East of England
91.2% (145/159)
London
76.0% (291/383)
Midlands
71.2% (260/365)
North East and Yorkshire
86.6% (363/419)
North West
84.4% (248/294)
South East
72.7% (189/260)
South West
87.1% xx-xxxx-xxxx)
OPEN UK Region

BRPNF
76.2% (77/101)
CEWT
46.0% (58/126)
EPEN
91.1% (144/158)
EPIC
93.4% (155/166)
NTPEN
70.7% (186/263)
NWEIG
80.8% (173/214)
ORENG
72.5% (129/178)
PENNEC
76.4% (110/144)
SETPEG
86.6% (103/119)
SWEP
87.4% (97/111)
SWIPE
85.4% (88/103)
SWPEG
83.7% (149/178)
TEN
89.6% (103/115)
WPNN
82.8% (53/64)
YPEN
93.6% (161/172)

31
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5

Figure 14: Epilepsy specialist nurse input by Health Board and Trust, cohort 5. Each participating
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%
20%
40%
60%
80%
100%
Health Board/Trust
National Performance

32
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
3a. Tertiary Input
Percentage of children and young people meeting deﬁned criteria for
paediatric neurology referral, with input of tertiary care and/or CESS
referral by their ﬁrst year.

49.2% (291/592) of children and young people with epilepsy meeting deﬁned criteria for tertiary
input, received input of tertiary care and/or CESS referral within the ﬁrst year of care. This
indicator ranged from 0.0% to 100.0%, with an interquartile range of 28.6% to 72.7%. The criteria
for tertiary input were updated in cohort 5 to include children with myoclonus and under 4 years
of age at ﬁrst paediatric assessment, aligning with the updated NICE guidelines.

Of the 291 children and young people who received tertiary input, 3.4% (10/291) had a CESS
referral by ﬁrst year, 84.9% (247/291) had paediatric neurology input by ﬁrst year, and 11.7%
(34/291) had both.

Table 18 shows how tertiary input is distributed between demographic population groups and
Table 19 shows the variation in tertiary input between England and Wales and across NHSE and
OPEN UK regions. Table 20 shows the timeliness of paediatric neurologist input.
Table 18: Percentage of children and young people with epilepsy meeting deﬁned criteria for
paediatric neurology referral, with input of tertiary care and/or CESS referral by ﬁrst year by
demographic.
Demographic Variables
England and
Wales
England
Wales
Total
49.2% (291/592)
48.9% (272/556)
52.8% (19/36)
Age

< 2 years
58.6% (188/321)
57.6% (175/304)
76.5% (13/17)
2 – 4 years
34.1% (62/182)
33.9% (57/168)
35.7% (5/14)
5 – 11 years
44.4% (28/63)
*
*
12 – 15 years
56.5% (13/23)
*
*
16+ years
0.0% (0/3)
0.0% (0/3)
N/A
Sex

Female
50.0% (135/270)
49.8% (126/253)
52.9% (9/17)
Male
48.4% (156/322)
48.2% (146/303)
52.6% (10/19)
Not Indicated
N/A
N/A
N/A
Ethnicity

Asian
41.2% (7/17)
41.2% (7/17)
N/A
Black
60.0% (3/5)
60.0% (3/5)
N/A
Mixed
30.8% (4/13)
30.8% (4/13)
N/A
White
39.9% (73/183)
39.8% (66/166)
41.2% (7/17)
NICE guidelines [NG217], 2022 (Statement 3.1.4) state that
referral to tertiary paediatric epilepsy services should be
considered when deﬁned criteria are met
49.2%

33
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Other
57.1% (4/7)
57.1% (4/7)
N/A
Not Indicated
54.5% (200/367)
54.0% (188/348)
63.2% (12/19)
Deprivation

Most deprived
42.1% (64/152)
40.4% (57/141)
63.6% (7/11)
Second most deprived
42.6% (60/141)
41.7% (55/132)
55.6% (5/9)
Third least deprived
55.6% (60/108)
56.0% (56/100)
50.0% (4/8)
Second least deprived
49.3% (36/73)
*
*
Least deprived
60.3% (44/73)
*
*
Not indicated
60.0% (27/45)
65.9% (27/41)
0.0% (0/4)

Table 19: Percentage of children and young people with epilepsy meeting deﬁned criteria for
paediatric neurology referral, with input of tertiary care and/or CESS referral by ﬁrst year by
region.
Geographic Region
KPI 3a. Tertiary Input
England and Wales
49.2% (291/592)
Country

England
48.9% (272/556)
Wales
52.8% (19/36)
NHS England Region

East of England
43.2% (19/44)
London
53.6% (45/84)
Midlands
44.3% (43/97)
North East and Yorkshire
53.4% (62/116)
North West
46.2% (37/80)
South East
55.0% (44/80)
South West
40.0% (22/55)
OPEN UK Region

BRPNF
41.4% (12/29)
CEWT
48.3% (14/29)
EPEN
43.2% (19/44)
EPIC
46.8% (22/47)
NTPEN
45.3% (24/53)
NWEIG
43.1% (25/58)
ORENG
55.8% (29/52)
PENNEC
53.8% (28/52)
SETPEG
66.7% (20/30)
SWEP
55.6% (15/27)
SWIPE
37.5% (12/32)
SWPEG
48.1% (26/54)
TEN
55.6% (15/27)

34
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
WPNN
55.6% (10/18)
YPEN
50.0% (20/40)

Figure 15: Tertiary input by Health Board and Trust, cohort 5. Each participating Health Board or
Trust is represented by a vertical bar in the order of the percentage score, including those scoring
0% in this graph.
Table 20: Time in months to achieving input from a paediatric neurologist, since ﬁrst referral, of
the 281 patients meeting deﬁned criteria for tertiary input with paediatric neurology input within
ﬁrst year.
Time in months
England and
Wales
England
Wales
0 – 2 months
52.7% (148/281)
52.9% (139/263)
50.0% (9/18)
2 – 4 months
19.2% (54/281)
*
*
4 – 6 months
10.3% (29/281)
9.9% (26/263)
16.7% (3/18)
6 – 8 months
7.5% (21/281)
8.0% (21/263)
0.0% (0/18)
8 – 10 months
5.0% (14/281)
4.2% (11/263)
16.7% (3/18)
10 – 12 months
5.3% (15/281)
*
*

0%
20%
40%
60%
80%
100%
Health Board/Trust
National Performance

35
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
3b. Epilepsy Surgery Referral
Percentage of ongoing children and young people meeting deﬁned
Children’s Epilepsy Surgery Service (CESS) referral criteria with
evidence of CESS referral by ﬁrst year.

37.3% (41/110) of children and young people with epilepsy meeting
CESS referral criteria had evidence of CESS referral within the ﬁrst year
of care. This was an increase, compared to 33.1% (39/118) in cohort 4.
This indicator ranged from 0.0% to 100.0%, with an interquartile range of 0.0% to 50.0%.

Figure 16: Epilepsy surgery referral in Rounds 3 and 4.

Table 21 shows epilepsy surgery referral over time in Rounds 3 and 4. Table 22 shows how
epilepsy surgery referrals are distributed between demographic population groups and Table 23
shows the variation in epilepsy surgery referrals between England and Wales and across NHSE
and OPEN UK regions.
Table 21: The percentage of children and young people meeting deﬁned criteria for epilepsy
surgery referral with evidence of epilepsy surgery referral by cohort.
Cohort
England and
Wales
England
Wales
Round 3, Cohort 1
30.3% (27/89)
*
*
Round 3, Cohort 2
22.6% (24/106)
23.1% (24/104)
0% (0/2)
Round 3, Cohort 3
36.3% (49/135)
*
*
Round 4, Cohort 4
33.1% (39/118)
*
*
Round 4, Cohort 5
37.3% (41/110)
37.9% (39/103)
28.6% (2/7)

30%
23%
36%
33%
37%
0%
20%
40%
60%
80%
100%
Round 3,
Cohort 1
Round 3,
Cohort 2
Round 3,
Cohort 3
Round 4,
Cohort 4
Round 4,
Cohort 5
37.3%

36
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Table 22: Percentage of children and young people meeting deﬁned criteria for epilepsy surgery
referral with evidence of epilepsy surgery referral by demographic.
Demographic Variables
England and
Wales
England
Wales
Total
37.3% (41/110)
37.9% (39/103)
28.6% (2/7)
Age

< 2 years
31.8% (14/44)
*
*
2 – 4 years
*
*
*
5 – 11 years
48.1% (13/27)
48.1% (13/27)
N/A
12 – 15 years
60.0% (9/15)
*
*
16+ years
*
*
N/A
Sex

Female
39.6% (19/48)
*
*
Male
35.5% (22/62)
*
*
Not Indicated
N/A
N/A
N/A
Ethnicity

Asian
*
*
N/A
Black
*
*
N/A
Mixed
*
*
N/A
White
30.6% (11/36)
31.2% (10/32)
25.0% (1/4)
Other
*
*
N/A
Not Indicated
40.3% (25/62)
40.7% (24/59)
33.3% (1/3)
Deprivation

Most deprived
13.0% (3/23)
15.8% (3/19)
0.0% (0/4)
Second most deprived
30.8% (8/26)
*
*
Third least deprived
59.1% (13/22)
*
*
Second least deprived
31.2% (5/16)
31.2% (5/16)
N/A
Least deprived
53.3% (8/15)
53.3% (8/15)
N/A
Not Indicated
50.0% (4/8)
50.0% (4/8)
N/A

Table 23: Percentage of children and young people meeting deﬁned criteria for epilepsy surgery
referral with evidence of epilepsy surgery referral by region.
Geographic Region
KPI 3b. Epilepsy Surgery Referral
England and Wales
37.3% (41/110)
Country

England
37.9% (39/103)
Wales
*
NHS England Region

East of England
66.7% (4/6)
London
46.7% (7/15)
Midlands
29.2% (7/24)

37
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
North East and Yorkshire
30.8% (4/13)
North West
40.0% (8/20)
South East
30.8% (4/13)
South West
41.7% (5/12)
OPEN UK Region

BRPNF
37.5% (3/8)
CEWT
28.6% (2/7)
EPEN
66.7% (4/6)
EPIC
45.5% (5/11)
NTPEN
44.4% (4/9)
NWEIG
31.2% (5/16)
ORENG
57.1% (4/7)
PENNEC
50.0% (3/6)
SETPEG
44.4% (4/9)
SWEP
0.0% (0/4)
SWIPE
42.9% (3/7)
SWPEG
28.6% (2/7)
TEN
0.0% (0/3)
WPNN
20.0% (1/5)
YPEN
20.0% (1/5)

Figure 17: Epilepsy surgery referral by Health Board and Trust, cohort 5. Each participating 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%
20%
40%
60%
80%
100%
Health Board/Trust
National Performance

38
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
4. ECG
Percentage of children and young people with convulsive seizures and
epilepsy, with an ECG at ﬁrst year.

72.1% (1036/1436) of children and young people with epilepsy and convulsive seizures had an ECG
within the ﬁrst year of care in cohort 5. This was an increase compared to 69.6% (996/1431) in
cohort 4. This indicator ranged from 0.0% to 100.0%, with an interquartile range of 61.6% to
90.0%.

Figure 18: ECG access in Rounds 3 and 4.

Table 24 shows ECG access over time in Rounds 3 and 4. Table 25 shows how access to ECG is
distributed between demographic population groups and Table 26 shows the variation in access
to ECG between England and Wales and across NHSE and OPEN UK regions.
Table 24: The percentage of children and young people with epilepsy and convulsive seizures
that had an ECG within the ﬁrst year of care by cohort.

England and
Wales
England
Wales
Round 3, Cohort 1
67.6% (474/701)
69.5% (460/662)
35.9% (14/39)
Round 3, Cohort 2
65.3% (855/1309)
65.4% (850/1300)
55.6% (5/9)
68%
65%
69%
70%
72%
0%
20%
40%
60%
80%
100%
Round 3,
Cohort 1
Round 3,
Cohort 2
Round 3,
Cohort 3
Round 4,
Cohort 4
Round 4,
Cohort 5
NICE guidelines [NG217], 2022 (Statement 1.2.2) state that all
children and young people with a suspected seizure should
have a 12-lead ECG to identify cardiac-related conditions that
could mimic an epileptic seizure.
72.1%

39
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Round 3, Cohort 3
69.0% (840/1218)
68.8% (814/1184)
76.5% (26/34)
Round 4, Cohort 4
69.6% (996/1431)
69.5% (942/1356)
72.0% (54/75)
Round 4, Cohort 5
72.1% (1036/1436)
72.6% (979/1349)
65.5% (57/87)

Table 25: Percentage of children and young people with epilepsy and convulsive seizures that
had an ECG within the ﬁrst year of care by demographic.
Demographic Variables
England and
Wales
England
Wales
Total
72.1% (1036/1436)
72.6% (979/1349)
65.5% (57/87)
Age

< 2 years
63.5% (134/211)
*
*
2 – 4 years
64.9% (183/282)
64.6% (170/263)
68.4% (13/19)
5 – 11 years
75.5% (419/555)
76.1% xx-xxxx-xxxx)
65.6% (21/32)
12 – 15 years
77.4% (271/350)
78.2% (254/325)
68.0% (17/25)
16+ years
76.3% (29/38)
*
*
Sex

Female
72.9% (443/608)
73.9% (424/574)
55.9% (19/34)
Male
71.6% (591/825)
71.6% (553/772)
71.7% (38/53)
Not Indicated
*
*
N/A
Ethnicity

Asian
74.5% (38/51)
74.5% (38/51)
N/A
Black
73.7% (14/19)
73.7% (14/19)
N/A
Mixed
69.0% (20/29)
*
*
White
65.6% (259/395)
*
*
Other
78.9% (15/19)
78.9% (15/19)
N/A
Not Indicated
74.8% (690/923)
74.4% (654/879)
81.8% (36/44)
Deprivation

Most deprived
69.4% (243/350)
69.3% (226/326)
70.8% (17/24)
Second most deprived
70.8% (228/322)
71.4% (215/301)
61.9% (13/21)
Third least deprived
74.8% (178/238)
75.5% (173/229)
55.6% (5/9)
Second least deprived
71.5% (153/214)
71.2% (146/205)
77.8% (7/9)
Least deprived
75.2% (161/214)
76.3% (151/198)
62.5% (10/16)
Not Indicated
74.5% (73/98)
75.6% (68/90)
62.5% (5/8)

Table 26: Percentage of children and young people with epilepsy and convulsive seizures that
had an ECG within the ﬁrst year of care by region.
Geographic Region
KPI 4. ECG
England and Wales
72.1% (1036/1436)
Country

England
72.6% (979/1349)

40
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Wales
65.5% (57/87)
NHS England Region

East of England
78.8% (82/104)
London
80.3% (204/254)
Midlands
56.0% (140/250)
North East and Yorkshire
77.7% (220/283)
North West
67.3% (132/196)
South East
77.6% (118/152)
South West
75.5% (83/110)
OPEN UK Region

BRPNF
76.5% (52/68)
CEWT
60.5% (49/81)
EPEN
79.6% (82/103)
EPIC
73.1% (76/104)
NTPEN
78.7% (140/178)
NWEIG
51.0% (79/155)
ORENG
57.4% (54/94)
PENNEC
78.3% (72/92)
SETPEG
80.8% (59/73)
SWEP
65.8% (50/76)
SWIPE
79.6% (43/54)
SWPEG
82.5% (99/120)
TEN
72.5% (58/80)
WPNN
74.4% (29/39)
YPEN
79.0% (94/119)

41
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5

Figure 19: ECG by Health Board and Trust, cohort 5. Each participating 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%
20%
40%
60%
80%
100%
Health Board/Trust
National Performance

42
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
5. MRI
Percentage of children and young people with epilepsy with deﬁned
indications for an MRI brain scan who had a timely MRI brain scan
within 6 weeks of request.
*The 6-week timeframe was added to this KPI for cohort 5.

53.1% (385/725) of children and young people with epilepsy and deﬁned indications for an MRI
had an MRI brain scan within 6 weeks of request. This indicator ranged from 0.0% to 100.0%, with
an interquartile range of 35.7% to 75.0%. The 6-week timeframe was introduced into the measure
this year.

73.8% (535/725) of children and young people with deﬁned indications for an MRI had an MRI
brain scan in the ﬁrst year of care. This was an increase from 70.6% (499/707) in cohort 4.

Table 27 shows how access to MRIs is distributed between demographic population groups and
Table 28 shows the variation in access to MRIs between England and Wales and across NHSE
and OPEN UK regions. Table 29 shows the timeliness of MRI Brain from the date of request.
Table 27: Percentage of children and young people with epilepsy with deﬁned indications for an
MRI who had an MRI brain scan within 6 weeks of request by demographic.
Demographic Variables
England and
Wales
England
Wales
Total
53.1% (385/725)
53.6% (360/672)
47.2% (25/53)
Age

< 2 years
66.7% (214/321)
67.8% (206/304)
47.1% (8/17)
2 – 4 years
42.7% (44/103)
41.3% (38/92)
54.5% (6/11)
5 – 11 years
44.8% (86/192)
44.7% (80/179)
46.2% (6/13)
12 – 15 years
37.4% (37/99)
36.8% (32/87)
41.7% (5/12)
16+ years
40.0% (4/10)
40.0% (4/10)
N/A
Sex

Female
53.8% (176/327)
53.5% (162/303)
58.3% (14/24)
Male
52.8% (209/396)
54.0% (198/367)
37.9% (11/29)
Not Indicated
*
*
N/A
Ethnicity

Asian
44.4% (12/27)
44.4% (12/27)
N/A
Black
50.0% (5/10)
50.0% (5/10)
N/A
Mixed
37.5% (6/16)
37.5% (6/16)
N/A
White
52.5% (106/202)
53.6% (97/181)
42.9% (9/21)
Other
63.6% (7/11)
63.6% (7/11)
N/A
NICE guidelines [NG217], 2022 (Statement 1.3.1) state that MRI
should be the imaging investigation of choice in individuals
with epilepsy, and this should be within 6 weeks of referral.
53.1%

43
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Not Indicated
54.2% (249/459)
54.6% (233/427)
50.0% (16/32)
Deprivation

Most deprived
44.6% (86/193)
44.6% (79/177)
43.8% (7/16)
Second most deprived
55.6% (94/169)
56.1% (87/155)
50.0% (7/14)
Third least deprived
53.2% (66/124)
53.8% (63/117)
42.9% (3/7)
Second least deprived
58.4% (59/101)
*
*
Least deprived
57.6% (53/92)
58.5% (48/82)
50.0% (5/10)
Not Indicated
58.7% (27/46)
*
*

Table 28: Percentage of children and young people with epilepsy with deﬁned indications for an
MRI who had an MRI brain scan within 6 weeks of request by region.
Geographic Region
KPI 5. MRI
England and Wales
53.1% (385/725)
Country

England
53.6% (360/672)
Wales
47.2% (25/53)
NHS England Region

East of England
50.9% (28/55)
London
61.5% (83/135)
Midlands
48.9% (44/90)
North East and Yorkshire
45.6% (68/149)
North West
56.2% (45/80)
South East
54.1% (53/98)
South West
60.0% (39/65)
OPEN UK Region

BRPNF
68.2% (15/22)
CEWT
29.2% (7/24)
EPEN
50.0% (27/54)
EPIC
41.3% (19/46)
NTPEN
58.8% (57/97)
NWEIG
59.1% (39/66)
ORENG
59.6% (31/52)
PENNEC
55.0% (22/40)
SETPEG
55.9% (19/34)
SWEP
47.7% (21/44)
SWIPE
56.2% (18/32)
SWPEG
56.9% (41/72)
TEN
33.9% (19/56)
WPNN
72.4% (21/29)
YPEN
50.9% (29/57)

44
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5

Figure 20: MRI brain scan achievement by Health Board and Trust, cohort 5. Each participating
Health Board or Trust is represented by a vertical bar in the order of the percentage score,
including those scoring 0% in this graph.
Table 29: Time in weeks to MRI from request, of the children meeting deﬁned indications for an
MRI in cohort 5.
Time in weeks
England and
Wales
England
Wales
0 – 2 weeks
41.0% (297/725)
41.5% (279/672)
34.0% (18/53)
2 – 4 weeks
6.6% (48/725)
6.6% (44/672)
7.6% (4/53)
4 – 8 weeks
9.8% (71/725)
9.7% (65/672)
11.3% (6/53)
8 – 12 weeks
6.1% (44/725)
*
*
12 – 16 weeks
3.0% (22/725)
*
*
16+ weeks
11.9% (86/725)
11.5% (77/672)
17.0% (9/53)

0%
20%
40%
60%
80%
100%
Health Board/Trust
National Performance

45
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
6. Assessment of Mental Health issues
Percentage of children and young people with epilepsy aged 5 years
and over where there is documented evidence that they have been
asked about mental health either through clinical screening or a
questionnaire/measure.
*New measure for cohort 5.

22.4% (330/1472) of children and young people with epilepsy, aged 5 years and over, had
documented evidence of assessment of mental health issues within the ﬁrst year in cohort 5. This
indicator ranged from 0.0% to 100.0%, with an interquartile range of 0.0% to 33.3%. This
performance indicator was introduced to the audit for cohort 5.

Table 30 shows how assessment of mental health issues is distributed between demographic
population groups and Table 31 shows the variation in the assessment of mental health issues
between England and Wales and across NHSE and OPEN UK regions.
Table 30: Percentage of children and young people with epilepsy with evidence of an assessment
of mental health issues by demographic.
Demographic Variables
England and
Wales
England
Wales
Total
22.4% (330/1472)
21.7% (301/1385)
33.3% (29/87)
Age

5 – 11 years
21.3% (204/959)
21.1% (191/907)
25.0% (13/52)
12 – 15 years
25.4% (117/460)
23.7% (101/426)
47.1% (16/34)
16+ years
17.0% (9/53)
*
*
Sex

Female
23.4% (158/675)
23.0% (146/636)
30.8% (12/39)
Male
21.5% (171/794)
20.6% (154/746)
35.4% (17/48)
Not Indicated
*
*
N/A
Ethnicity

Asian
18.2% (10/55)
18.2% (10/55)
N/A
Black
23.1% (3/13)
23.1% (3/13)
N/A
Mixed
18.2% (4/22)
*
*
White
24.9% (95/382)
22.4% (75/335)
42.6% (20/47)
Other
27.8% (5/18)
*
*
Not Indicated
21.7% (213/982)
21.6% (204/944)
23.7% (9/38)
Deprivation

Most deprived
19.1% (67/350)
18.2% (59/324)
30.8% (8/26)
NICE guidelines [NG217], 2022 (Statement 2.1.11) state that
children and young people with epilepsy and their family
and/or carers should be offered opportunities to discuss
emotional health and psychological wellbeing.
22.4%

46
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Second most deprived
22.1% (73/331)
20.9% (65/311)
40.0% (8/20)
Third least deprived
23.0% (52/226)
*
*
Second least deprived
21.9% (49/224)
23.2% (49/211)
0.0% (0/13)
Least deprived
27.6% (69/250)
25.6% (60/234)
56.2% (9/16)
Not Indicated
22.0% (20/91)
*
*

Table 31: Percentage of children and young people with epilepsy with evidence of an assessment
of mental health issues by region.
Geographic Region
KPI 6. Assessment of Mental Health Issues
England and Wales
22.4% (330/1472)
Country

England
21.7% (301/1385)
Wales
33.3% (29/87)
NHS England Region

East of England
23.5% (24/102)
London
27.4% (75/274)
Midlands
16.6% (40/241)
North East and Yorkshire
19.0% (52/274)
North West
26.8% (52/194)
South East
13.9% (23/166)
South West
26.1% (35/134)
OPEN UK Region

BRPNF
12.5% (8/64)
CEWT
19.1% (18/94)
EPEN
23.8% (24/101)
EPIC
33.6% (36/107)
NTPEN
26.6% (51/192)
NWEIG
25.7% (36/140)
ORENG
7.3% (8/109)
PENNEC
27.9% (24/86)
SETPEG
18.8% (15/80)
SWEP
30.6% (22/72)
SWIPE
25.3% (19/75)
SWPEG
24.1% (27/112)
TEN
24.7% (19/77)
WPNN
31.1% (14/45)
YPEN
7.6% (9/118)

47
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5

Figure 21: Assessment of mental health issues by Health Board and Trust, cohort 5. Each
participating 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%
20%
40%
60%
80%
100%
Health Board/Trust
National Performance

48
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
7. Mental Health Support
Percentage of children and young people with epilepsy and an
identiﬁed mental health problem recorded who had evidence of
receiving mental health support.
*New measure for cohort 5.
61.5% (83/135) of children and young people with epilepsy that had an
identiﬁed mental health problem, also had evidence of receiving
mental health support within the ﬁrst year of care in cohort 5. This
indicator ranged from 0.0% to 100.0%, with an interquartile range of 50.0% to 100.0%. This
performance indicator was introduced to the audit for cohort 5.
Table 32 shows how mental health support is distributed between demographic population
groups and Table 33 shows the variation in access to mental health support between England
and Wales and across NHSE and OPEN UK regions.
Table 32: Percentage of children and young people with epilepsy and an identiﬁed mental health
problem with evidence of receiving mental health support by demographic.
Demographic Variables
England and
Wales
England
Wales
Total
61.5% (83/135)
60.9% (78/128)
71.4% (5/7)
Age

< 2 years
*
*
N/A
2 – 4 years
50.0% (3/6)
*
*
5 – 11 years
51.6% (33/64)
*
*
12 – 15 years
72.4% (42/58)
70.9% (39/55)
100.0% (3/3)
16+ years
66.7% (4/6)
66.7% (4/6)
N/A
Sex

Female
70.8% (46/65)
*
*
Male
52.9% (37/70)
51.6% (33/64)
66.7% (4/6)
Not Indicated
N/A
N/A
N/A
Ethnicity

Asian
*
*
N/A
Black
*
*
N/A
Mixed
*
*
N/A
White
73.5% (25/34)
75.0% (21/28)
66.7% (4/6)
Other
*
*
N/A
Not Indicated
57.3% (55/96)
*
*
Deprivation

Most deprived
60.7% (17/28)
*
*
Second most deprived
63.6% (21/33)
*
*
Third least deprived
54.2% (13/24)
*
*
Second least deprived
61.5% (8/13)
61.5% (8/13)
N/A
Least deprived
64.3% (18/28)
*
*
61.5%

49
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Not Indicated
66.7% (6/9)
*
*

Table 33: Percentage of children and young people with epilepsy and an identiﬁed mental health
problem with evidence of receiving mental health support by region.
Geographic Region
KPI 7. MRI
England and Wales
61.5% (83/135)
Country

England
60.9% (78/128)
Wales
71.4% (5/7)
NHS England Region

East of England
53.8% (7/13)
London
56.7% (17/30)
Midlands
52.4% (11/21)
North East and Yorkshire
70.0% (14/20)
North West
75.0% (9/12)
South East
66.7% (8/12)
South West
60.0% (12/20)
OPEN UK Region

BRPNF
57.1% (4/7)
CEWT
42.9% (3/7)
EPEN
53.8% (7/13)
EPIC
57.1% (4/7)
NTPEN
57.1% (12/21)
NWEIG
75.0% (9/12)
ORENG
75.0% (3/4)
PENNEC
64.3% (9/14)
SETPEG
100.0% (5/5)
SWEP
66.7% (4/6)
SWIPE
57.1% (4/7)
SWPEG
50.0% (7/14)
TEN
75.0% (3/4)
WPNN
58.3% (7/12)
YPEN
100.0% (2/2)

50
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5

Figure 22: Mental health support by Health Board and Trust, cohort 5. Each participating 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%
20%
40%
60%
80%
100%
Health Board/Trust
National Performance

51
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
8. Sodium Valproate
Percentage of all females with epilepsy aged 12 years and over currently
on valproate treatment with an annual risk acknowledgement form
completed and/or a Pregnancy Prevention Programme in place.
*Age criteria was reﬁned in cohort 5.

100% (3/3) of females with epilepsy aged 12 years and over currently on valproate treatment had
an annual risk acknowledgement form completed and/or a Pregnancy Prevention Programme in
place by the ﬁrst year in cohort 5. The age criterion was updated from 9-years to 12-years for
cohort 5.

100% (3/3) of females with epilepsy aged 12 years and over currently on valproate treatment had
an annual risk acknowledgement form completed and/or a Pregnancy Prevention Programme in
place. These three young people were all aged 12 to 15 years and their ethnicity was not stated. All
three were seen in England. The deprivation quintiles, NHS England Region, and OPEN UK
regions are masked due to small numbers.

Table 34 shows how sodium valproate risk discussion is distributed between demographic
population groups and Table 35 shows the variation in sodium valproate risk acknowledgement
between England and Wales and across NHSE and OPEN UK regions.
Table 34: Percentage of females with epilepsy aged 12 years and over currently on valproate
treatment that have an annual risk acknowledgement form completed and/or a Pregnancy
Prevention Programme in place by demographic. Note, that deprivation results have not been
disclosed due to small numbers.
Demographic Variables
England and
Wales
England
Wales
Age

12 – 15 years
100.0% (3/3)
100.0% (3/3)
N/A
16+ years
N/A
N/A
N/A
Ethnicity

Asian
N/A
N/A
N/A
Black
N/A
N/A
N/A
Mixed
N/A
N/A
N/A
White
N/A
N/A
N/A
Other
N/A
N/A
N/A
Not Indicated
100.0% (3/3)
100.0% (3/3)
N/A

NICE guidelines [NG217], 2022 (Statement 4.4.4) state that girls
of childbearing potential who are receiving sodium valproate
treatment should be informed of the risk of harm in pregnancy
and an assessment should be made as to the risks and
beneﬁts of sodium valproate.
100%

52
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Table 35: Percentage of females with epilepsy aged 12 years and over currently on valproate
treatment that have an annual risk acknowledgement form completed and/or a Pregnancy
Prevention Programme in place by region. Note, that regional results have not been disclosed
due to small numbers.
Geographic Region
KPI 8. Sodium Valproate
Country

England
100.0% (3/3)
Wales
N/A

53
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
9a. Care Planning agreement
Percentage of children and young people with epilepsy with evidence
of care planning agreement by ﬁrst year. This requires evidence of a
patient-held individualised epilepsy document that includes all care
planning information at 12 months, that this care plan has been
updated where necessary, and that there is evidence of agreement to
the care plan.

80.8% (1787/2212) of children and young people with epilepsy had evidence of care planning
agreement within the ﬁrst year of care in cohort 5. This was an increase compared to 74.3%
(1727/2324) in cohort 4. This indicator ranged from 0.0% to 100.0%, with an interquartile range of
72.7% to 100.0%.

Figure 23: Care planning agreement in Rounds 3 and 4.

Table 36 shows care planning agreement over time in Rounds 3 and 4. Table 37 shows how care
planning agreement is distributed between demographic population groups and Table 38
shows the variation in care planning agreement between England and Wales and across NHSE
and OPEN UK regions. Table 39 shows the breakdown of the sub-metrics that make up the care
planning agreement measure.

62%
65%
70%
74%
81%
0%
20%
40%
60%
80%
100%
Round 3,
Cohort 1
Round 3,
Cohort 2
Round 3,
Cohort 3
Round 4,
Cohort 4
Round 4,
Cohort 5
NICE guidelines [NG217], 2022 (Statement 2.1.7) state that children
and young people with epilepsy should have a comprehensive
care plan that is agreed between the person, their family and/or
carers, and primary and secondary care providers.
80.8%

54
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Table 36: The percentage of children and young people with epilepsy with evidence of care
planning agreement within the ﬁrst year of care by cohort.

England and
Wales
England
Wales
Round 3, Cohort 1
62.4% (694/1112)
63.5% (667/1051)
44.3% (27/61)
Round 3, Cohort 2
65.4% (1378/2106)
65.3% (1363/2086)
75.0% (15/20)
Round 3, Cohort 3
70.0% (1379/1974)
70.0% (1343/1918)
64.3% (36/56)
Round 4, Cohort 4
74.3% (1727/2324)
74.6% (1652/2215)
68.8% (75/109)
Round 4, Cohort 5
80.8% (1787/2212)
80.5% (1670/2074)
84.8% (117/138)

Table 37: Percentage of children and young people with epilepsy with evidence of care planning
agreement within the ﬁrst year of care by demographic.
Demographic Variables
England and
Wales
England
Wales
Total
80.8% (1787/2212)
80.5% (1670/2074)
84.8% (117/138)
Age

< 2 years
78.5% (252/321)
78.0% (237/304)
88.2% (15/17)
2 – 4 years
81.6% xx-xxxx-xxxx)
81.3% (313/385)
85.3% (29/34)
5 – 11 years
80.8% (775/959)
80.6% (731/907)
84.6% (44/52)
12 – 15 years
82.4% (379/460)
82.2% (350/426)
85.3% (29/34)
16+ years
73.6% (39/53)
*
*
Sex

Female
81.8% (812/993)
81.4% (760/934)
88.1% (52/59)
Male
79.9% (972/1216)
79.8% (907/1137)
82.3% (65/79)
Not Indicated
100.0% (3/3)
100.0% (3/3)
N/A
Ethnicity

Asian
81.3% (61/75)
81.3% (61/75)
N/A
Black
88.0% (22/25)
88.0% (22/25)
N/A
Mixed
93.0% (40/43)
*
*
White
81.6% (496/608)
80.2% (434/541)
92.5% (62/67)
Other
80.0% (20/25)
*
*
Not Indicated
79.9% (1148/1436)
80.0%(1094/1367)
78.3% (54/69)
Deprivation

Most deprived
82.8% (444/536)
82.5% (409/496)
87.5% (35/40)
Second most deprived
77.3% xx-xxxx-xxxx)
76.3% xx-xxxx-xxxx)
93.3% (28/30)
Third least deprived
80.7% (296/367)
80.5% (280/348)
84.2% (16/19)
Second least deprived
84.6% (275/325)
85.0% (260/306)
78.9% (15/19)
Least deprived
80.2% (271/338)
80.4% (255/317)
76.2% (16/21)
Not Indicated
78.5% (113/144)
78.5% (106/135)
77.8% (7/9)

55
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Table 38: Percentage of children and young people with epilepsy with evidence of care planning
agreement by region.
Geographic Region
KPI 9a. Care Planning Agreement
England and Wales
80.8% (1787/2212)
Country

England
80.5% (1670/2074)
Wales
84.8% (117/138)
NHS England Region

East of England
87.4% (139/159)
London
78.3% (300/383)
Midlands
67.1% (245/365)
North East and Yorkshire
90.9% (381/419)
North West
74.5% (219/294)
South East
78.8% (205/260)
South West
93.3% (181/194)
OPEN UK Region

BRPNF
75.2% (76/101)
CEWT
86.5% (109/126)
EPEN
87.3% (138/158)
EPIC
85.5% (142/166)
NTPEN
74.9% (197/263)
NWEIG
57.5% (123/214)
ORENG
68.0% (121/178)
PENNEC
79.9% (115/144)
SETPEG
87.4% (104/119)
SWEP
83.8% (93/111)
SWIPE
93.2% (96/103)
SWPEG
78.7% (140/178)
TEN
98.3% (113/115)
WPNN
85.9% (55/64)
YPEN
95.9% (165/172)

56
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5

Figure 24: Care planning agreement by Health Board and Trust, cohort 5. Each participating
Health Board or Trust is represented by a vertical bar in the order of the percentage score,
including those scoring 0% in this graph.
Table 39: Comprehensive care planning agreement sub-metrics.

England and
Wales
England
Wales
All three elements of care
planning agreement
80.8% (1787/2212)
80.5% (1670/2074)
84.8% (117/138)
Individualised epilepsy document
or copy clinic letter that includes
care planning information
95.5% (2112/2212)
95.7% (1984/2074)
92.8% (128/138)
Evidence of agreement between
the person, their family and/or
carers as appropriate
86.3% (1909/2212)
86.1% (1785/2074)
89.9% (124/138)
The care plan has been updated
where necessary
84.4% (1867/2212)
84.3% (1748/2074)
86.2% (119/138)
0%
20%
40%
60%
80%
100%
Health Board/Trust
National Performance

57
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
9b. Care planning content
Percentage of children and young people with epilepsy with evidence
of communication regarding core elements of care planning by ﬁrst
year. This requires evidence of discussion of water safety, ﬁrst aid,
general risk and participation, service contact details and sudden
unexpected death in epilepsy (SUDEP), and a parental prolonged
seizures care plan if also prescribed rescue medication.
*This measure was updated in cohort 5.

64.8% (1433/2212) of children and young people with epilepsy had evidence of achieving core
elements of care planning. This indicator ranged from 0.0% to 100.0%, with an interquartile range
of 36.6% to 95.0%. Evidence of discussion of SUDEP was added as an element of the care
planning content indicator for cohort 5.

66.3% of children and young people with epilepsy had evidence of discussion regarding SUDEP
in cohort 5. This was 56.5% (1313/2324) in cohort 4.

Table 40 shows how care planning content is distributed between demographic population
groups and Table 41 shows the variation in care planning content between England and Wales
and across NHSE and OPEN UK regions. Table 42 shows the breakdown of the sub-metrics which
make up the care planning content measure.
Table 40: Percentage of children and young people with epilepsy with evidence of achieving core
elements of care planning by demographic.
Demographic Variables
England and
Wales
England
Wales
Total
64.8% (1433/2212)
66.2% (1374/2074)
42.8% (59/138)
Age

< 2 years
61.1% (196/321)
62.5% (190/304)
35.3% (6/17)
2 – 4 years
57.8% (242/419)
60.5% (233/385)
26.5% (9/34)
5 – 11 years
64.3% (617/959)
64.9% (589/907)
53.8% (28/52)
12 – 15 years
72.8% (335/460)
74.9% (319/426)
47.1% (16/34)
16+ years
81.1% (43/53)
*
*
Sex

Female
66.0% (655/993)
68.0% (635/934)
33.9% (20/59)
Male
63.7% (775/1216)
64.7% (736/1137)
49.4% (39/79)
Not Indicated
100.0% (3/3)
100.0% (3/3)
N/A
Ethnicity

Asian
73.3% (55/75)
73.3% (55/75)
N/A
NICE guidelines [NG217], 2022 state that children and young people with epilepsy should
have a protocol for administering rescue medication (Statement 7.3), a water safety risk
assessment (Statement 2.1.11), ﬁrst aid and safety information, service contact details
(Statement 1.1.8), and information regarding the risk of SUDEP (Statement 10.1.4)
64.8%

58
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Black
60.0% (15/25)
60.0% (15/25)
N/A
Mixed
51.2% (22/43)
*
*
White
63.5% (386/608)
64.3% (348/541)
56.7% (38/67)
Other
64.0% (16/25)
*
*
Not Indicated
65.4% (939/1436)
67.2% (919/1367)
29.0% (20/69)
Deprivation

Most deprived
67.4% (361/536)
69.4% xx-xxxx-xxxx)
42.5% (17/40)
Second most deprived
61.2% (307/502)
61.9% (292/472)
50.0% (15/30)
Third least deprived
59.7% (219/367)
61.2% (213/348)
31.6% (6/19)
Second least deprived
69.5% (226/325)
71.9% (220/306)
31.6% (6/19)
Least deprived
66.9% (226/338)
68.5% (217/317)
42.9% (9/21)
Not Indicated
65.3% (94/144)
65.2% (88/135)
66.7% (6/9)

Table 41: Percentage of children and young people with epilepsy with evidence of
communication regarding core elements of care planning by region.
Geographic Region
KPI 9b. Care Planning Content
England and Wales
64.8% (1433/2212)
Country

England
66.2% (1374/2074)
Wales
42.8% (59/138)
NHS England Region

East of England
48.4% (77/159)
London
58.2% (223/383)
Midlands
70.4% (257/365)
North East and Yorkshire
76.4% (320/419)
North West
61.6% (181/294)
South East
70.8% (184/260)
South West
68.0% (132/194)
OPEN UK Region

BRPNF
87.1% (88/101)
CEWT
45.2% (57/126)
EPEN
48.1% (76/158)
EPIC
38.6% (64/166)
NTPEN
49.4% (130/263)
NWEIG
73.8% (158/214)
ORENG
72.5% (129/178)
PENNEC
53.5% (77/144)
SETPEG
79.8% (95/119)
SWEP
49.5% (55/111)
SWIPE
69.9% (72/103)

59
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
SWPEG
71.3% (127/178)
TEN
93.9% (108/115)
WPNN
78.1% (50/64)
YPEN
85.5% (147/172)

Figure 25: Care planning content by Health Board and Trust, cohort 5. Each participating Health
Board or Trust is represented by a vertical bar in the order of the percentage score, including
those scoring 0% in this graph.
Table 42: Comprehensive care planning content sub-metrics.

England and
Wales
England
Wales
All core elements of care
planning
64.8% (1433/2212)
66.3% (1374/2074)
42.8% (59/138)
If prescribed rescue medication,
prolonged seizures care plan
98.6% (577/585)
98.6% (542/550)
100.0% (35/35)
Water safety
90.6% (2003/2212)
90.7% (1881/2074)
88.4% (122/138)
First aid
95.5% (2112/2212)
95.5% (1981/2074)
94.9% (131/138)
General participation and risk
92.0% (2036/2212)
92.2% (1913/2074)
89.1% (123/138)
Service contact details
97.2% (2150/2212)
97.1% (2013/2074)
99.3% (137/138)
SUDEP
66.3% (1466/2212)
67.7% (1405/2074)
44.2% (61/138)

0%
20%
40%
60%
80%
100%
Health Board/Trust
National Performance

60
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
10. School Individual Health Care Plan
Percentage of children and young people with epilepsy aged 5 years
and above with evidence of a school individual healthcare plan by ﬁrst
year.
38.9% (573/1472) of children and young people with epilepsy aged 5
years and above had evidence of a school individual health care plan
within the ﬁrst year of care in cohort 5. This was an increase compared
to 36.9% (577/1562) in cohort 4. This indicator ranged from 0.0% to
100.0%, with an interquartile range of 6.8% to 68.3%.

Figure 26: School individual health care plan in Rounds 3 and 4.

Table 43 shows evidence of school individual health care plans over time in Rounds 3 and 4.
Table 44 shows how the presence of school individual health care plans are distributed between
demographic population groups and Table 45 shows the variation in access to school individual
health care plans between England and Wales and across NHSE and OPEN UK regions.
Table 43: The percentage of children and young people with epilepsy aged 5 years and above
with evidence of a school individual health care plan within the ﬁrst year of care by cohort.

England and
Wales
England
Wales
Round 3, Cohort 1
32.2% (231/717)
32.4% (219/676)
29.3% (12/41)
Round 3, Cohort 2
32.4% (454/1402)
23.1% (446/1931)
72.7% (8/11)
Round 3, Cohort 3
36.1% (499/1381)
36.3% (487/1343)
31.6% (12/38)
Round 4, Cohort 4
36.9% (577/1562)
36.9% (555/1503)
40.7% (24/59)
Round 4, Cohort 5
38.9% (573/1472)
39.7% (550/1385)
26.4% (23/87)

Table 44: Percentage of children and young people with epilepsy aged 5 years and above with
evidence of a school individual health care plan within the ﬁrst year of cae by demographic.
32%
32%
36%
37%
39%
0%
20%
40%
60%
80%
100%
Round 3,
Cohort 1
Round 3,
Cohort 2
Round 3,
Cohort 3
Round 4,
Cohort 4
Round 4,
Cohort 5
38.9%

61
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Demographic Variables
England and
Wales
England
Wales
Total
38.9% (573/1472)
39.7% (550/1385)
26.4% (23/87)
Age

5 – 11 years
38.0% xx-xxxx-xxxx)
*
*
12 – 15 years
41.3% (190/460)
41.8% (178/426)
35.3% (12/34)
16+ years
35.8% (19/53)
*
*
Sex

Female
40.4% (273/675)
40.9% (260/636)
33.3% (13/39)
Male
37.5% (298/794)
38.6% (288/746)
20.8% (10/48)
Not Indicated
*
*
N/A
Ethnicity

Asian
12.7% (7/55)
12.7% (7/55)
N/A
Black
30.8% (4/13)
30.8% (4/13)
N/A
Mixed
36.4% (8/22)
*
*
White
38.5% (147/382)
41.2% (138/335)
19.1% (9/47)
Other
22.2% (4/18)
*
*
Not Indicated
41.0% (403/982)
41.2% (389/944)
36.8% (14/38)
Deprivation

Most deprived
42.3% (148/350)
42.9% (139/324)
34.6% (9/26)
Second most deprived
35.0% (116/331)
36.0% (112/311)
20.0% (4/20)
Third least deprived
37.2% (84/226)
*
*
Second least deprived
40.6% (91/224)
41.7% (88/211)
23.1% (3/13)
Least deprived
42.0% (105/250)
*
*
Not Indicated
31.9% (29/91)
28.7% (25/87)
100.0% (4/4)

Table 45: Percentage of children and young people with epilepsy aged 5 years and above with
evidence of a school individual health care plan within the ﬁrst year of care by region.
Geographic Region
KPI 10. School Individual Health Care Plan
England and Wales
38.9% (573/1472)
Country

England
39.7% (550/1385)
Wales
26.4% (23/87)
NHS England Region

East of England
41.2% (42/102)
London
29.9% (82/274)
Midlands
24.1% (58/241)
North East and Yorkshire
52.9% (145/274)
North West
57.2% (111/194)
South East
37.3% (62/166)

62
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
South West
37.3% (50/134)
OPEN UK Region

BRPNF
25.0% (16/64)
CEWT
28.7% (27/94)
EPEN
41.6% (42/101)
EPIC
45.8% (49/107)
NTPEN
27.6% (53/192)
NWEIG
52.9% (74/140)
ORENG
24.8% (27/109)
PENNEC
38.4% (33/86)
SETPEG
43.8% (35/80)
SWEP
23.6% (17/72)
SWIPE
32.0% (24/75)
SWPEG
31.2% (35/112)
TEN
74.0% (57/77)
WPNN
48.9% (22/45)
YPEN
52.5% (62/118)

Figure 27: School individual health care plan by Health Board and Trust, cohort 5. Each
participating 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%
20%
40%
60%
80%
100%
Health Board/Trust
National Performance

63
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Additional analyses
Accuracy of Diagnosis
0.01% (14/2212) of children and young people with epilepsy had their diagnosis withdrawn within
the ﬁrst year of care in England and Wales. This is consistent with cohort 4, where 0.01% (31/2325)
of children and young people with epilepsy had their diagnosis withdrawn.

First Paediatric Assessment
In cohort 5, most children and young people with epilepsy had initial referrals from emergency
departments, and the majority had their ﬁrst paediatric assessment in an acute setting, which is
consistent across all ﬁve cohorts.
Table 46: The referring service and setting of ﬁrst paediatric assessment for children and young
people with epilepsy in cohort 5 in England and Wales.

England and
Wales
England
Wales
Referring Service

Emergency Department
45.8% (1014/2212)
46.8% (970/2074)
31.9% (44/138)
GP
30.7% (678/2212)
30.2% (627/2074)
37.0% (51/138)
Health Visitor
0.1% (3/2212)
0.1% (3/2074)
0.0% (0/138)
Outpatient Paediatrics
8.0% (177/2212)
8.0% (165/2074)
8.7% (12/138)
Inpatient Paediatrics
11.1% (245/2212)
10.5% (218/2074)
19.6% (27/138)
PICU
0.2% (4/2212)
0.2% (4/2074)
0.0% (0/138)
Neonatal Care
1.0% (23/2212)
*
*
Other
3.1% (68/2212)
*
*
Setting

Acute
50.8% (1123/2212)
50.9% (1055/2074)
49.3% (68/138)
Non-acute
48.9% (1081/2212)
48.7% (1011/2074)
50.7% (70/138)
Unknown
0.4% (8/2212)
0.4% (8/2074)
0.0% (0/138)

'Appropriate ﬁrst paediatric assessment’ was previously included as a key performance indicator
for cohorts 1-4, and is deﬁned as a clinical assessment for paroxysmal episode(s) consisting of all
the components deemed as necessary by Epilepsy12, with reference to NICE guidelines [NG217].
In cohort 5, 63.7% (1409/2212) of children and young people with epilepsy had an appropriate
ﬁrst paediatric assessment. This was 63.4% (1475/2324) in cohort 4. Table 47 shows the
percentage of children and young people with epilepsy who had evidence of receiving each
element of an ‘appropriate ﬁrst paediatric assessment’ in cohort 5.
Table 47: Percentage of children and young people with epilepsy with evidence of receiving each
element of an ‘appropriate ﬁrst paediatric assessment’ in cohort 5 in England and Wales.

64
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5

England and
Wales
England
Wales
Appropriate ﬁrst paediatric
assessment
63.7% (1409/2212)
63.2% (1311/2074)
71.0% (98/138)
Descriptions of episode
99.3% (2197/2212)
99.3%(2059/2074)
100.0% (138/138)
Descriptions of age of child/timing
of the ﬁrst episode
83.7% (1851/2212)
83.9% (1741/2074)
79.7% (110/138)
Descriptions of frequency
96.4% (2132/2212)
96.2% (1995/2074)
99.3% (137/138)
Descriptions of general examination
95.3% (2109/2212)
95.1% (1972/2074)
99.3% (137/138)
Descriptions of neurological
examination
92.8% (2053/2212)
92.4% (1917/2074)
98.6% (136/138)
Descriptions of developmental,
learning or schooling progress
88.2% (1952/2212)
87.8% (1821/2074)
94.9% (131/138)
If aged 3yrs and above, evidence of
consideration of emotional or
behavioural problems
78.3% (1731/2212)
77.7% (1611/2074)
87.0% (120/138)

65
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Treatment
Table 48 and table 49 shows the number and types of anti-epileptic drugs (AEDs) (also referred
to as anti-seizure medication) prescribed to children and young people with epilepsy in cohort 5
during their ﬁrst year of care. 6.6% of children and young people with epilepsy were prescribed
three or more AEDs during their ﬁrst year of care, which is consistent with cohort 4 (6%).
Table 48: Number of anti-epileptic drugs (AEDs) prescribed to children and young people with
epilepsy in cohort 5 within the ﬁrst year of care.
Number of AEDs
England and Wales
England
Wales
1 or more AEDs
88.9% (1967/2212)
88.9%(1843/2074)
89.9% (124/138)
3 or more AEDs
6.6% (147/2212)
6.5% (135/2074)
8.7% (12/138)
No AED prescriptions recorded
11.1% (245/2212)
11.1% (231/2074)
10.1% (14/138)

In cohort 5, the most commonly prescribed anti-epileptic drugs were Levetiracetam, sodium
valproate, lamotrigine and carbamazepine, which is consistent with cohorts 1 to 4.
Table 49: Percentage of children and young people with epilepsy prescribed each anti-epileptic
drug (AED) in cohort 5 in England and Wales.
AED
England and
Wales
England
Wales
ACTH
0.0% (0/2212)
0.0% (0/2074)
0.0% (0/138)
Acetazolamide
0.0% (0/2212)
0.0% (0/2074)
0.0% (0/138)
Carbamazepine
11.7% (259/2212)
11.7% (242/2074)
12.3% (17/138)
Clobazam
3.7% (81/2212)
3.7% (76/2074)
3.6% (5/138)
Clonazepam
0.2% (5/2212)
*
*
Eslicarbazepine acetate
0.0% (0/2212)
0.0% (0/2074)
0.0% (0/138)
Ethosuximide
7.9% (175/2212)
7.9% xx-xxxx-xxxx)
8.0% (11/138)
Gabapentin
*
*
*
Lacosamide
0.5% (12/2212)
0.6% (12/2074)
0.0% (0/138)
Lamotrigine
20.3% (450/2212)
20.0% (415/2074)
25.4% (35/138)
Levetiracetam
41.1% (909/2212)
41.6% (863/2074)
33.3% (46/138)
Methylprednisolone
*
*
*
Nitrazepam
0.2% (4/2212)
0.2% (4/2074)
0.0% (0/138)
Oxcarbazepine
0.6% (14/2212)
*
*
Perampanel
*
*
*
Phenobarbital
0.9% (20/2212)
0.8% (17/2074)
2.2% (3/138)
Phenytoin
0.6% (14/2212)
0.7% (14/2074)
0.0% (0/138)
Piracetam
0.0% (0/2212)
0.0% (0/2074)
0.0% (0/138)
Prednisolone
2.5% (55/2212)
2.4% (49/2074)
4.3% (6/138)
Pregabalin
0.0% (0/2212)
0.0% (0/2074)
0.0% (0/138)
Primidone
0.0% (0/2212)
0.0% (0/2074)
0.0% (0/138)
Ruﬁnamide
0.2% (4/2212)
0.2% (4/2074)
0.0% (0/138)

66
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Sodium Valproate
24.3% (538/2212)
24.3% (504/2074)
24.6% (34/138)
Stiripentol
0.1% (3/2212)
0.1% (3/2074)
0.0% (0/138)
Sulthiame
*
*
*
Tiagabine
0.0% (0/2212)
0.0% (0/2074)
0.0% (0/138)
Topiramate
2.0% (44/2212)
*
*
Vigabatrin
2.9% (65/2212)
2.8% (58/2074)
5.1% (7/138)
Zonisamide
0.5% (10/2212)
*
*
Other
1.3% (29/2212)
1.1% (22/2074)
5.1% (7/138)

Figure 29 shows the number of males and females with epilepsy who were prescribed sodium
valproate in the ﬁrst year of care cohort 5. There were more males on sodium valproate than
females across all ages, and very few females aged 9 and above on sodium valproate. This is
consistent with cohort 4.
Figure 28: Number of children and young people with epilepsy on sodium valproate by sex in
cohort 5 in England and Wales.
24.9% (552/2216) of children and young people diagnosed with epilepsy had rescue medication
prescribed in the ﬁrst year of care in cohort 5 in England and Wales. This ﬁgure was 24.8% in
England and 23.2% in Wales. The proportion of children and young people prescribed rescue
medication increased in cohort 5, compared to 23% (533/2324) in cohort 4.
*
*
*

67
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Table 50: Percentage of children and young people with epilepsy prescribed rescue medication
in cohort 5 in England and Wales.
Rescue medication
England and Wales
England
Wales
Buccal midazolam
24.7% (547/2212)
24.8% (515/2074)
23.2% (32/138)
Rectal diazepam
*
*
*
Other
*
*
*
No record of rescue medication
being prescribed
75.0% (1660/2212)
75.0% (1555/2074)
76.1% (105/138)

68
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Investigations
Table 51 shows the percentage of children and young people with epilepsy in cohort 5 who
obtained each investigation in the ﬁrst year of care in England and Wales. These are descriptive
results and are not performance-related percentages, as not all children with epilepsy will require
every investigation.
97% (2153/2212) of children and young people with epilepsy obtained a ﬁrst EEG, 64% obtained a
12-lead ECG, 64.6% (1429/2212) obtained an MRI brain, and 14.5% (320/2212) obtained a CT head
scan within their ﬁrst year of care. These ﬁgures have increased from cohort 4. 27.4% (605/2212)
had a formal developmental assessment, which was also an increase from cohort 4 (24%).
Table 51: Percentage of children and young people with epilepsy in cohort 5 who received each
investigation within the ﬁrst year of care in England and Wales.
Investigation
England and
Wales
England
Wales
EEG obtained
97.3% (2153/2212)
97.5% (2023/2074)
94.2% (130/138)

EEG not requested
0.3% (7/2212)
*
*

EEG requested but not

obtained
2.3% (51/2212)
2.1% (44/2074)
5.1% (7/138)
12 lead ECG
63.7% (1410/2212)
64.3% (1333/2074)
55.8% (77/138)
CT head scan
14.5% (320/2212)
13.9% (289/2074)
22.5% (31/138)
MRI Brain scan
64.6% (1429/2212)
64.8% (1344/2074)
61.6% (85/138)
Formal developmental assessment
27.4% (605/2212)
27.0% (561/2074)
31.9% (44/138)
Formal cognitive assessment
18.3% (404/2212)
18.5% (383/2074)
15.2% (21/138)

97.3% (2153/2324) of children and young people with epilepsy obtained an EEG within the ﬁrst
year of care and had a valid request date recorded. 53.6% (1154/2324) had an EEG within four
weeks of request, which is an increase from 52.0% (1209/2324) in cohort 4. The proportion of
children and young people waiting more than 16 weeks for an EEG from request increased to
7.7% (166/2212) from 6.4% (148/2324) in cohort 4.
Table 52 shows the time between EEG request and input in England and Wales in cohort 5. NICE
guidelines state that children and young people having initial investigations for epilepsy undergo
EEG investigations within 4 weeks of the initial request. Two children and young people did not
have a valid EEG obtained date and are excluded from Table 52. Table 53 and Figure 29 shows
the variation in time to EEG by deprivation quintile.
Table 52: Time in weeks between the date of initial EEG request and the date when the EEG was
obtained, in cohort 5 in England and Wales.
Time in weeks
England and Wales
England
Wales
0 – 4 weeks
53.6% (1154/2153)
54.5% (1103/2023)
39.2% (51/130)
4 – 8 weeks
25.3% (544/2153)
25.7% (520/2023)
18.5% (24/130)
8 – 12 weeks
9.3% (201/2153)
8.6% (174/2023)
20.8% (27/130)
12 – 16 weeks
4.0% (86/2153)
3.7% (74/2023)
9.2% (12/130)
> 16 weeks
7.7% (166/2153)
7.4% (150/2023)
12.3% (16/130)

69
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5

Table 53: Time in weeks between the date of initial EEG request and the date when the EEG was
obtained, by deprivation quintile in cohort 5 in England and Wales.

Most
deprived
Second
most
deprived
Third least
deprived
Second
least
deprived
Least
deprived
0 – 4 weeks
54.1%
(285/527)
49.0%
(237/484)
55.3%
(198/358)
55.4%
(174/314)
55.0%
(181/329)
4 – 8 weeks
24.1%
(127/527)
26.4%
(128/484)
22.3%
(80/358)
25.2%
(79/314)
28.6%
(94/329)
8 – 12 weeks
10.2%
(54/527)
11.2%
(54/484)
7.3%
(26/358)
8.9%
(28/314)
8.8%
(29/329)
12 – 16 weeks
2.8%
(15/527)
4.8%
(23/484)
5.6%
(20/358)
4.1%
(13/314)
2.7%
(9/329)
> 16 weeks
8.7%
(46/527)
8.3%
(40/484)
9.5%
(34/358)
6.4%
(20/314)
4.9%
(16/329)

Figure 29: Time in weeks between the date of initial EEG request and the date when the EEG was
obtained, by deprivation quintile in cohort 5 in England and Wales.
54%
49%
55%
55%
55%
24%
26%
22%
25%
29%
10%
11%
7%
9%
9%
3%
5%
6%
4%
3%
9%
8%
9%
6%
5%
0%
20%
40%
60%
80%
100%
Most deprived
Second most deprived
Third least deprived
Second least deprived
Least deprived
0 - 4 weeks
4 - 8 weeks
8 - 12 weeks
12 - 16 weeks
>16 weeks

70
Epilepsy12: Clinical audit national and regional results. Round 4, cohort 5
Professional input
In cohort 5, 89.7% (1984/2212) of children and young people with epilepsy received input from a
consultant paediatrician with expertise in epilepsy and 85.0% (1881/2212) received input from an
epilepsy specialist nurse within the ﬁrst year of care. This is an increase from 88.9% (2065/2324)
and 79.7% (1852/2324) respectively in cohort 4.
5.0% (110/2212) received input from a genetic service and 0.9% (19/2212) from a ketogenic
dietician, which is consistent with cohort 4.
Table 54: Percentage of children and young people with epilepsy receiving input by professionals
and services in cohort 5 in England and Wales.

England and
Wales
England
Wales
Consultant paediatrician with
expertise in epilepsies
89.7% (1984/2212)
89.4%(1854/2074)
94.2% (130/138)
Epilepsy specialist nurse
85.0% (1881/2212)
84.6% (1755/2074)
91.3% (126/138)
Paediatric neurologist
21.6% (477/2212)
21.2% (440/2074)
26.8% (37/138)
CESS
1.4% (32/2212)
*
*
Ketogenic dietician
0.9% (19/2212)
0.9% (19/2074)
0.0% (0/138)
VNS service
0.0% (0/2212)
0.0% (0/2074)
0.0% (0/138)
Genetic service
5.0% (110/2212)
5.1% (106/2074)
2.9% (4/138)
Clinical psychologist
2.2% (48/2212)
2.0% (41/2074)
5.1% (7/138)
Educational psychologist
0.5% (10/2212)
*
*
Psychiatrist
0.6% (13/2212)
0.6% (13/2074)
0.0% (0/138)
Neuropsychologist
*
*
*
Counselling service
0.7% (15/2212)
*
*
Other mental health professional
0.7% (16/2212)
*
*
Youth Worker
*
*
*
Other
0.0% (0/2212)
0.0% (0/2074)
0.0% (0/138)