Epilepsy12 2024 Organisational 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 B 
2024 Organisational audit national & 
regional results 
Round 4, November 2023 

2 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Contents 
Introduction __________________________________________________________________________________ 3 
Participation ________________________________________________________________________________ 4 
Workforce ____________________________________________________________________________________ 6 
Consultant Paediatrician _______________________________________________________ 6 
Epilepsy Specialist Nurse _______________________________________________________ 9 
Epilepsy Specialist Nurse Functions _____________________________________________ 10 
Clinic conﬁguration _________________________________________________________________________ 13 
Deﬁned epilepsy clinics ________________________________________________________ 13 
Epilepsy Best Practice Criteria (BPC) – England Only ____________________________ 15 
Tertiary Provision ____________________________________________________________________________ 16 
Paediatric Neurology Services __________________________________________________ 16 
Other Services _________________________________________________________________ 18 
Investigations ______________________________________________________________________________ 20 
Service contact _____________________________________________________________________________ 23 
Transition __________________________________________________________________________________ 25 
Pathways _____________________________________________________________________ 25 
Transition Clinics ______________________________________________________________ 26 
Adult Professionals ____________________________________________________________ 27 
Mental Health and Neurodevelopment _____________________________________________________ 30 
Mental Health _________________________________________________________________ 30 
Neurodevelopment ___________________________________________________________ 35 
Care planning ______________________________________________________________________________ 36 
Patient database or register ________________________________________________________________ 38 
 
 
 

3 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Introduction 
This report focuses on 2023 organisational data from Epilepsy12 Round 4. This describes 
paediatric epilepsy services as at 1 November 2023. Data has been presented here at national 
(England and Wales combined), country and two regional levels; NHS England regions and 
Organisation of Paediatric Epilepsy Networks in the UK (OPEN UK). The 2024 annual report and 
accompanying outputs can be found here 
Round 1 and 2 of the organisational audit took place in 2009 and 2014, respectively. The 2018, 
2019, 2020, and 2021 organisational audits took place under Round 3 of the audit, and from 2022 
under Round 4.  
 
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 
Epilepsy12 organisational audit metrics are used as evidence of achievement in the treatment 
function code (TFC) 223 Paediatric Epilepsy Best Practice Criteria (BPC). The relevant 
measures are indicated by ‘(BPC)’  

4 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Participation 
 
117 out of the 138 (84.8%) registered 
Health Boards and Trusts submitted and 
locked organisational audit data by 8th 
February 2024, which is a decrease from 
91% in the 2022 organisational audit.  
The total number of registered Health 
Boards and Trusts varies across the years 
due to Trust mergers. 
Participation decreased in England, from 
91% (128/140) in 2022 to 84% (111/132) in 
2023. Participation was 100% (6/6) in 2022 
and 2023in Wales. Figure 1 shows 
participation rates since 2018.Table 1 provides a breakdown of Epilepsy12 Round 4, 2023 
Organisational audit participation by country, NHS England region, and Organisation of 
Paediatric Epilepsy Networks.  
Table 1: Participation in the 2023 Organisational Audit by region. 
Geographic Region 
Number of HB/Ts 
registered  
Percentage of HB/Ts 
that have a completed 
the Organisational Audit 
2023 
England and Wales 
138 
84.8% (117/138) 
England 
132 
84.1% (111/132) 
Wales 
6 
100% (6/6) 
NHS England Region 
 
 
East of England 
15 
80% (12/15) 
London 
21 
85.7% (18/21) 
Midlands 
26 
76.0% (19/25) 
North East and Yorkshire 
22 
95.5% (21/22) 
North West 
16 
94.1% (16/17) 
South East 
20 
75% (15/20) 
South West 
12 
83.3% (10/12) 
OPEN UK Region 
 
 
BRPNF 
14 
78.6% (11/14) 
CEWT 
6 
66.7% (4/6) 
EPEN 
13 
84.6% (11/13) 
EPIC 
8 
100% (8/8) 
NTPEN 
15 
80% (12/15) 
NWEIG 
12 
83.3% (10/12) 
ORENG 
7 
85.7% (6/7) 
100%
94%
82%
80%
91%
85%
0%
20%
40%
60%
80%
100%
2018
2019
2020
2021
2022
2023
Participation
Figure 1: Percentage of Health Boards and Trusts that 
have completed the organisational audit between 
Round 1 and Round 4, 2023. 

5 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
PENNEC 
8 
87.5% (7/8) 
SETPEG 
10 
70% (7/10) 
SWEP 
5 
100% (5/5) 
SWIPE 
8 
87.5% (7/8) 
SWTPEG 
8 
87.5% (7/8) 
TEN 
6 
100% (6/6) 
WPNN 
9 
77.8% (7/9) 
YPEN 
9 
100% (9/9) 
 

6 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Workforce 
The whole time equivalent (WTE) of consultant paediatricians with ‘expertise in epilepsy’ and 
Epilepsy Specialist Nurses (ESN) has increased steadily since Round 1, 2009 (Figure 2).  
The mean WTE of paediatricians with ‘expertise in epilepsy’ and ESNs is greater in Wales than 
England, which is consistent with previous years. The mean WTE for paediatricians with expertise 
in epilepsy for a Health Board/Trust has increased since 2018 from 2.1 to 2.4 in England and 2.7 to 
3.7 in Wales.  Similarly, the mean WTE for ESNs epilepsy specialist nurses for a Health Board/Trust 
has increased since 2018 from 1.0 to 1.6 in England and 1.7 to 2.0 in Wales. 
 
Figure 2: Mean Whole Time Equivalent (WTE) consultant paediatrician with ‘expertise in epilepsy’ 
and Epilepsy Specialist Nurse employed in Health Boards and Trusts across England and Wales in 
Rounds 1 – 4.  
Consultant Paediatrician 
All Health Boards and Trusts had at least some general paediatric consultant WTE, and 98% 
(115/117) had a consultant paediatrician with ‘expertise in epilepsy’. This is consistent with the 
2022 organisational audit. The mean WTE for general paediatric consultants is 17.2, which is an 
increase from 16.8 in 2022.  
Table 2: General paediatric consultant Whole Time Equivalent (WTE) by region.  
 
WTE General Paediatric Consultant 
Geographic Region 
Percentage with 
some WTE 
Total WTE 
Mean WTE 
(Range) 
Median WTE 
(Inter-quartile 
range) 
England and Wales 
100.0% (117/117) 
2017.4 
17.2 (5.0-42.0) 
16.0 (12.0-20.7) 
England 
100.0% (111/111) 
1879.2 
16.9 (5.0-42.0) 
16.0 (12.0-20.0) 
Wales 
100.0% (6/6) 
138.2 
23.0 (9.0-31.0) 
24.1 (20.0-30.0) 
NHS England Region 
 
 
 
 
East of England 
100.0% (12/12) 
163.7 
13.6 (5.9-23.9) 
13.0 (10.0-17.5) 
London 
100.0% (18/18) 
338.0 
18.8 (8.0-32.9) 
18.6 (16.0-21.0) 
1.8
1.8
2.1
2.3
2.3
2.4
2.4
2.5
0.5
0.6
1.0
1.2
1.3
1.4
1.4
1.6
0.0
0.5
1.0
1.5
2.0
2.5
2009
2014
2018
2019
2020
2021
2022
2023
Mean Whole Time Equivalent
Consultant Paediatrician with 'expertise in epilepsy'
Epilepsy specialist nurse

7 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Midlands 
100.0% (19/19) 
316.0 
16.6 (5.0-36.5) 
14.0 (12.0-21.5) 
North East and 
Yorkshire 
100.0% (21/21) 
372.1 
17.7 (7.9-35.0) 
17.0 (13.0-21.0) 
North West 
100.0% (16/16) 
272.5 
17.0 (9.5-42.0) 
14.6 (12.0-18.5) 
South East 
100.0% (15/15) 
252.9 
16.9 (7.0-29.3) 
18.0 (11.1-20.0) 
South West 
100.0% (10/10) 
xx-xxxx-xxxx 
16.4 (9.0-27.6) 
13.5 (10.0-26.0) 
OPEN UK Region 
 
 
 
 
BRPNF 
100.0% (11/11) 
152.4 
13.9 (5.0-22.3) 
13.4 (12.0-16.0) 
CEWT 
100.0% (4/4) 
109.2 
27.3 (20.7-36.5) 
26.0 (21.4-33.2) 
EPEN 
100.0% (11/11) 
150.7 
13.7 (5.9-23.9) 
13.0 (10.0-18.0) 
EPIC 
100.0% (8/8) 
114.5 
14.3 (9.5-30.0) 
12.0 (11.0-14.5) 
NTPEN 
100.0% (12/12) 
230.6 
19.2 (8.0-32.9) 
18.6 (12.6-25.5) 
NWEIG 
100.0% (10/10) 
202.0 
20.2 (13.6-42.0) 
16.2 (14.2-23.6) 
ORENG 
100.0% (6/6) 
102.6 
17.1 (11.0-25.0) 
17.3 (13.0-19.0) 
PENNEC 
100.0% (7/7) 
143.9 
20.6 (9.5-35.0) 
20.0 (14.0-25.0) 
SETPEG 
100.0% (7/7) 
117.8 
16.8 (8.0-24.8) 
17.0 (15.1-18.9) 
SWEP 
100.0% (5/5) 
108.2 
21.6 (9.0-31.0) 
20.5 (20.0-27.7) 
SWIPE 
100.0% (7/7) 
127.1 
18.2 (9.0-27.6) 
15.5 (9.5-27.5) 
SWTPEG 
100.0% (7/7) 
134.5 
19.2 (11.0-29.3) 
19.6 (15.6-21.0) 
TEN 
100.0% (6/6) 
83.8 
14.0 (10.0-19.0) 
12.8 (11.2-18.0) 
WPNN 
100.0% (7/7) 
82.4 
11.8 (7.0-20.0) 
11.1 (7.3-15.0) 
YPEN 
100.0% (9/9) 
157.8 
17.5 (7.9-28.9) 
16.8 (14.7-21.0) 
 
Table 3: Consultant paediatrician with ‘expertise in epilepsy’ WTE by region. 
 
WTE Consultant Paediatrician with ‘Expertise in Epilepsy’ 
 
Percentage with 
some WTE 
Total 
WTE 
Mean WTE 
(Range) 
Excluding HBTs with zero WTE 
Geographic 
Region 
Mean WTE 
(Range)  
Median WTE 
(Inter-quartile 
range)  
England and 
Wales 
98.3% (115/117) 
289.4 
2.5 (0.0-9.0) 
2.5 (0.2-9.0) 
2.0 (1.5-3.0) 
England 
98.2% (109/111) 
267.4 
2.4 (0.0-9.0) 
2.5 (0.2-9.0) 
2.0 (1.5-3.0) 
Wales 
100.0% (6/6) 
22.0 
3.7 (0.8-7.6) 
3.7 (0.8-7.6) 
3.5 (2.6-4.0) 
NHS England 
Region 
 
 
 
 
 
East of England 
100.0% (12/12) 
22.3 
1.9 (0.6-4.0) 
1.9 (0.6-4.0) 
1.9 (1.0-2.2) 
London 
94.4% (17/18) 
36.1 
2.0 (0.0-7.0) 
2.1 (0.7-7.0) 
2.0 (1.0-2.5) 
Midlands 
94.7% (18/19) 
49.3 
2.6 (0.0-8.0) 
2.7 (1.0-8.0) 
2.0 (1.6-3.0) 
North East and 
Yorkshire 
100.0% (21/21) 
60.3 
2.9 (1.0-9.0) 
2.9 (1.0-9.0) 
2.0 (1.6-3.0) 
North West 
100.0% (16/16) 
36.8 
2.3 (0.2-4.5) 
2.3 (0.2-4.5) 
2.0 (1.6-3.0) 
South East 
100.0% (15/15) 
39.7 
2.6 (1.0-4.1) 
2.6 (1.0-4.1) 
2.9 (2.0-3.0) 

8 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
South West 
100.0% (10/10) 
22.9 
2.3 (1.0-4.8) 
2.3 (1.0-4.8) 
2.2 (1.2-3.0) 
OPEN UK 
Region 
 
 
 
 
 
BRPNF 
90.9% (10/11) 
25.2 
2.3 (0.0-8.0) 
2.5 (1.0-8.0) 
2.0 (1.3-3.0) 
CEWT 
100.0% (4/4) 
12.5 
3.1 (1.0-6.0) 
3.1 (1.0-6.0) 
2.8 (1.5-4.8) 
EPEN 
100.0% (11/11) 
21.3 
1.9 (0.6-4.0) 
1.9 (0.6-4.0) 
2.0 (1.0-2.5) 
EPIC 
100.0% (8/8) 
26.0 
3.3 (1.8-7.6) 
3.3 (1.8-7.6) 
2.8 (2.0-3.5) 
NTPEN 
91.7% (11/12) 
26.7 
2.2 (0.0-7.0) 
2.4 (1.0-7.0) 
2.0 (1.0-2.8) 
NWEIG 
100.0% (10/10) 
21.3 
2.1 (0.2-4.5) 
2.1 (0.2-4.5) 
2.0 (1.0-3.0) 
ORENG 
100.0% (6/6) 
16.6 
2.8 (1.0-5.0) 
2.8 (1.0-5.0) 
2.5 xx-xxxx-xxxx) 
PENNEC 
100.0% (7/7) 
27.0 
3.9 (1.2-9.0) 
3.9 (1.2-9.0) 
4.0 (2.0-4.3) 
SETPEG 
100.0% (7/7) 
15.8 
2.3 (1.0-3.0) 
2.3 (1.0-3.0) 
2.1 (1.7-3.0) 
SWEP 
100.0% (5/5) 
14.4 
2.9 (0.8-4.0) 
2.9 (0.8-4.0) 
3.0 (2.6-4.0) 
SWIPE 
100.0% (7/7) 
17.7 
2.5 (1.0-4.8) 
2.5 (1.0-4.8) 
2.6 (1.6-3.0) 
SWTPEG 
100.0% (7/7) 
14.4 
2.1 (0.7-4.1) 
2.1 (0.7-4.1) 
2.0 (1.0-3.0) 
TEN 
100.0% (6/6) 
10.0 
1.7 (1.0-3.0) 
1.7 (1.0-3.0) 
1.5 (1.0-2.0) 
WPNN 
100.0% (7/7) 
15.1 
2.2 (1.0-3.8) 
2.2 (1.0-3.8) 
2.2 (1.0-3.0) 
YPEN 
100.0% (9/9) 
25.3 
2.8 (1.0-9.0) 
2.8 (1.0-9.0) 
2.0 (1.8-2.5) 
 
Table 4: The percentage of general paediatric workforce with ‘expertise in epilepsy’ and the 
percentage of Health Boards and Trusts with a paediatric epilepsy clinical lead by region. (BPC)  
Geographic Region 
Percentage of general 
paediatric workforce 
WTE with expertise in 
epilepsy 
Percentage of HB/Ts 
with a deﬁned 
paediatric epilepsy 
clinical lead 
England and Wales 
14.3% (289.4/2017.4) 
89.7% (105/117) 
England 
14.2% (267.4/1879.2) 
90.1% (100/111) 
Wales 
15.9% (22/138.2) 
83.3% (5/6) 
NHS England Region 
 
 
East of England 
13.6% (22.3/163.7) 
100.0% (12/12) 
London 
10.7% (36.1/338) 
88.9% (16/18) 
Midlands 
15.6% (49.3/316) 
89.5% (17/19) 
North East and Yorkshire 
16.2% (60.3/372.1) 
85.7% (18/21) 
North West 
13.5% (36.8/272.5) 
93.8% (15/16) 
South East 
15.7% (39.7/252.9) 
86.7% (13/15) 
South West 
14.0% (22.9/xx-xxxx-xxxx) 
90.0% (9/10) 
OPEN UK Region 
 
 
BRPNF 
16.5% (25.2/152.4) 
81.8% (9/11) 
CEWT 
11.4% (12.5/109.2) 
100.0% (4/4) 
EPEN 
14.1% (21.3/150.7) 
100.0% (11/11) 
EPIC 
22.7% (26/114.5) 
87.5% (7/8) 
NTPEN 
11.6% (26.7/230.6) 
83.3% (10/12) 

9 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
NWEIG 
10.5% (21.3/202) 
100.0% (10/10) 
ORENG 
16.2% (16.6/102.6) 
100.0% (6/6) 
PENNEC 
18.8% (27/143.9) 
71.4% (5/7) 
SETPEG 
13.4% (15.8/117.8) 
85.7% (6/7) 
SWEP 
13.3% (14.4/108.2) 
80.0% (4/5) 
SWIPE 
13.9% (17.7/127.1) 
85.7% (6/7) 
SWTPEG 
10.7% (14.4/134.5) 
100.0% (7/7) 
TEN 
11.9% (10/83.8) 
100.0% (6/6) 
WPNN 
18.3% (15.1/82.4) 
85.7% (6/7) 
YPEN 
16.0% (25.3/157.8) 
88.9% (8/9) 
 
Epilepsy Specialist Nurse 
In November 2023, the mean WTE for Epilepsy Specialist Nurses (ESNs) was 1.6, which is an 
increase from 1.4 in 2023. 93% (109/117) of Health Boards and Trusts in the audit had at least some 
ESN WTE, which is an increase from 91% (117/128) in 2022, and a substantial increase from 49% 
(85/172) in 2009 (Figure 3). 
 
Figure 3: Percentage of Health Boards and Trusts in England and Wales with at least some 
Epilepsy Specialist Nurse (ESN) WTE, between Rounds 1 - 4. 
Table 5: Epilepsy Specialist Nurse (ESN) WTE by region. (BPC) 
 
WTE Epilepsy Specialist Nurse 
 
Percentage 
with some 
WTE 
Total 
WTE 
Mean WTE 
(Range) 
Excluding HBTs with zero WTE 
Geographic 
Region 
Mean WTE 
(Range 
Median WTE 
(Inter-quartile 
range) 
England and 
Wales 
93.2% (109/117) 
188.6 
1.6 (0.0-4.8) 
1.7 (0.3-4.8) 
1.6 (1.0-2.0) 
England 
93.7% (104/111) 
176.6 
1.6 (0.0-4.8) 
1.7 (0.3-4.8) 
1.6 (1.0-2.0) 
Wales 
83.3% (5/6) 
12.0 
2.0 (0.0-3.4) 
2.4 (1.0-3.4) 
2.8 (1.8-3.0) 
49%
68%
78%
82%
89%
89%
91%
93%
0%
20%
40%
60%
80%
100%
2009
2014
2018
2019
2020
2021
2022
2023
Percentage of HB/Ts with some 
ESN WTE

10 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
NHS England 
Region 
 
 
 
 
 
East of England 
91.7% (11/12) 
15.0 
1.2 (0.0-2.6) 
1.4 (0.6-2.6) 
1.0 (0.7-2.0) 
London 
100.0% (18/18) 
29.3 
1.6 (0.8-3.7) 
1.6 (0.8-3.7) 
1.1 (1.0-2.0) 
Midlands 
84.2% (16/19) 
25.6 
1.3 (0.0-3.8) 
1.6 (0.8-3.8) 
1.1 (1.0-2.0) 
North East and 
Yorkshire 
100.0% (21/21) 
40.1 
1.9 (0.6-4.8) 
1.9 (0.6-4.8) 
1.8 (1.2-2.3) 
North West 
100.0% (16/16) 
31.6 
2.0 (1.0-4.0) 
2.0 (1.0-4.0) 
2.0 (1.1-2.4) 
South East 
80.0% (12/15) 
17.2 
1.1 (0.0-2.5) 
1.4 (0.6-2.5) 
1.8 (1.0-2.0) 
South West 
100.0% (10/10) 
17.7 
1.8 (0.3-3.4) 
1.8 (0.3-3.4) 
1.5 (1.0-2.0) 
OPEN UK 
Region 
 
 
 
 
 
BRPNF 
72.7% (8/11) 
9.9 
0.9 (0.0-2.0) 
1.2 (0.8-2.0) 
1.0 (0.9-1.6) 
CEWT 
100.0% (4/4) 
9.8 
2.5 (1.0-3.8) 
2.5 (1.0-3.8) 
2.5 (1.5-3.4) 
EPEN 
100.0% (11/11) 
15.0 
1.4 (0.6-2.6) 
1.4 (0.6-2.6) 
1.0 (0.7-2.0) 
EPIC 
100.0% (8/8) 
15.4 
1.9 (1.0-3.8) 
1.9 (1.0-3.8) 
1.8 (1.0-2.5) 
NTPEN 
100.0% (12/12) 
20.2 
1.7 (1.0-3.7) 
1.7 (1.0-3.7) 
1.1 (1.0-2.2) 
NWEIG 
100.0% (10/10) 
20.0 
2.0 (1.0-4.0) 
2.0 (1.0-4.0) 
2.0 (1.2-2.6) 
ORENG 
66.7% (4/6) 
4.6 
0.8 (0.0-2.0) 
1.2 (0.6-2.0) 
1.0 (0.8-1.5) 
PENNEC 
100.0% (7/7) 
12.0 
1.7 (1.0-2.6) 
1.7 (1.0-2.6) 
1.8 (1.0-2.3) 
SETPEG 
85.7% (6/7) 
11.2 
1.6 (0.0-3.0) 
1.9 (1.3-3.0) 
1.7 (1.5-2.0) 
SWEP 
80.0% (4/5) 
9.2 
1.8 (0.0-3.4) 
2.3 (1.0-3.4) 
2.4 (1.4-3.2) 
SWIPE 
100.0% (7/7) 
13.5 
1.9 (0.3-3.4) 
1.9 (0.3-3.4) 
1.8 (1.0-3.3) 
SWTPEG 
100.0% (7/7) 
8.4 
1.2 (0.8-2.0) 
1.2 (0.8-2.0) 
1.0 (1.0-1.6) 
TEN 
100.0% (6/6) 
12.7 
2.1 (1.0-4.3) 
2.1 (1.0-4.3) 
2.0 (1.5-2.0) 
WPNN 
85.7% (6/7) 
9.3 
1.3 (0.0-2.5) 
1.5 (0.6-2.5) 
1.7 (0.8-2.0) 
YPEN 
100.0% (9/9) 
17.3 
1.9 (0.6-4.8) 
1.9 (0.6-4.8) 
1.8 (1.2-2.3) 
 
Epilepsy Specialist Nurse Functions 
Figure 4 shows the percentage of Health Boards and Trusts supporting key ESN functions. More 
than 90% of Health Boards and Trusts offer ESN support for school meetings, School IHP 
(Individual Healthcare plan) facilitation, and rescue medication for parents. All functions had an 
increase in support from 2022, apart from home visits, which decreased to 72% (84/117) from 
74% (95/128) in 2022.  

11 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
 
Figure 4: Epilepsy Specialist Nurse (ESN) functions supported. 
Table 6: Percentage of Health Boards and Trusts supporting each Epilepsy Specialist Nurse (ESN) 
function in England and Wales.  
Epilepsy Specialist 
Nurse Function 
All Health Boards and Trusts 
Health Boards and Trusts with 
some WTE ESN 
England 
and 
Wales 
England 
Wales 
England 
and 
Wales 
England 
Wales 
All 9 functions 
21.4% 
(25/117) 
22.5% 
(25/111) 
0.0% 
(0/6) 
22.9% 
(25/109) 
24.0% 
(25/104) 
0.0% 
(0/5) 
ED visits 
54.7% 
(64/117) 
57.7% 
(64/111) 
0.0% 
(0/6) 
58.7% 
(64/109) 
61.5% 
(64/104) 
0.0% 
(0/5) 
Home visits 
71.8% 
(84/117) 
73.0% 
(81/111) 
50.0% 
(3/6) 
77.1% 
(84/109) 
77.9% 
(81/104) 
60.0% 
(3/5) 
School individual 
healthcare plan 
facilitation 
91.5% 
(107/117) 
91.9% 
(102/111) 
83.3% 
(5/6) 
98.2% 
(107/109) 
98.1% 
(102/104) 
100.0% 
(5/5) 
Nurse led clinics 
79.5% 
(93/117) 
79.3% 
(88/111) 
83.3% 
(5/6) 
85.3% 
(93/109) 
84.6% 
(88/104) 
100.0% 
(5/5) 
Nurse prescribing 
43.6% 
(51/117) 
45.0% 
(50/111) 
16.7% 
(1/6) 
46.8% 
(51/109) 
48.1% 
(50/104) 
20.0% 
(1/5) 
Rescue medication 
training for parents 
93.2% 
(109/117) 
93.7% 
(104/111) 
83.3% 
(5/6) 
100.0% 
(109/109) 
100.0% 
(104/104) 
100.0% 
(5/5) 
Rescue medication 
training for schools 
82.9% 
(97/117) 
82.9% 
(92/111) 
83.3% 
(5/6) 
89.0% 
(97/109) 
88.5% 
(92/104) 
100.0% 
(5/5) 
School meetings 
89.7% 
(105/117) 
90.1% 
(100/111) 
83.3% 
(5/6) 
96.3% 
(105/109) 
96.2% 
(100/104) 
100.0% 
(5/5) 
0%
44%
55%
72%
79%
83%
89%
90%
91%
93%
0%
20%
40%
60%
80%
100%
All 9 functions
Nurse prescribing
ED visits
Home visits
Nurse led clinics
Rescue medication training - schools
Ward visits
School meetings
IHP facilitation
Rescue medication training - parents

12 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Ward visits 
88.9% 
(104/117) 
89.2% 
(99/111) 
83.3% 
(5/6) 
95.4% 
(104/109) 
95.2% 
(99/104) 
100.0% 
(5/5) 
None of the above 
0.0% 
(0/117) 
0.0% 
(0/111) 
0.0% 
(0/6) 
0.0% 
(0/109) 
0.0% 
(0/104) 
0.0% 
(0/5) 
 

13 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Clinic conﬁguration 
Deﬁned epilepsy clinics 
92% (108/117) of Health Boards and Trusts had a deﬁned epilepsy clinic for patients at secondary 
level, which is consistent with the 2022 organisational audit. Of those, 83% (97/117) held clinics 
that allowed at least 20 minutes with a consultant with expertise in epilepsy and an ESN, either 
simultaneously or in succession (Table 7).  
Figure 5 shows that the mean number of consultant or associate specialist-led secondary level 
clinics has increased since Round 1 but remains constant between 2022 and 2023.   
 
Figure 5: Mean number of secondary-level epilepsy clinics led by consultant or associate 
specialist in Round 1 to Round 4, November 2023.  
Table 7: Percentage of Health Boards and Trusts with deﬁned epilepsy clinics and the number of 
clinics per week, by region. (BPC) 
 
Deﬁned epilepsy clinics per week 
Percentage 
of clinics that 
allow ≥20 
minutes with 
a 
paediatrician 
with 
expertise and 
an ESN 
Geographic 
Region 
Percentage 
with a deﬁned 
epilepsy clinic 
Total 
Median 
(Inter-
quartile 
range) 
Mean 
(Range) 
England and 
Wales 
92.3% (108/117) 
265.2 
2.0 (1.2-3.0) 
2.3 (0.0-7.0) 
89.8% 
(97/108) 
England 
92.8% (103/111) 
249.9 
2.0 (1.0-3.0) 
2.3 (0.0-7.0) 
90.3% (93/103) 
Wales 
83.3% (5/6) 
15.3 
3.0 (2.0-3.3) 
2.5 (0.0-4.0) 
80% (4/5) 
NHS England 
Region 
 
 
 
 
 
East of England 
91.7% (11/12) 
22.3 
1.8 (1.0-2.8) 
1.9 (0.0-3.5) 
100% (11/11) 
London 
94.4% (17/18) 
48.5 
2.4 (1.5-3.0) 
2.7 (0.0-6.3) 
88.2% (15/17) 
1.0
1.1
1.9
2.1
2.1
2.2
2.3
2.3
0.0
0.5
1.0
1.5
2.0
2.5
2009
2014
2018
2019
2020
2021
2022
2023
Mean Number of Clincis

14 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Midlands 
84.2% (16/19) 
35.5 
1.9 (1.5-2.5) 
2.2 (1.0-6.5) 
93.8% (15/16) 
North East and 
Yorkshire 
95.2% (20/21) 
46.1 
2.0 (1.0-2.8) 
2.2 (0.0-4.0) 
80% (16/20) 
North West 
100.0% (16/16) 
37.8 
2.0 (1.6-3.0) 
2.4 (1.0-5.0) 
93.8% (15/16) 
South East 
93.3% (14/15) 
37.4 
2.5 (1.5-4.0) 
2.5 (0.0-4.5) 
85.7% (12/14) 
South West 
90.0% (9/10) 
22.4 
1.8 (1.0-2.8) 
2.2 (0.0-7.0) 
100% (9/9) 
OPEN UK Region 
 
 
 
 
 
BRPNF 
72.7% (8/11) 
15.7 
1.5 (0.0-2.0) 
1.4 (0.0-4.0) 
100% (8/8) 
CEWT 
100.0% (4/4) 
11.5 
1.8 (1.5-4.2) 
2.9 (1.5-6.5) 
75% (3/4) 
EPEN 
90.9% (10/11) 
21.3 
2.0 (1.0-3.0) 
1.9 (0.0-3.5) 
100% (10/10) 
EPIC 
100.0% (8/8) 
18.4 
2.4 (1.6-3.0) 
2.3 (1.0-3.3) 
87.5% (7/8) 
NTPEN 
91.7% (11/12) 
30.5 
1.9 (1.1-3.4) 
2.5 (0.0-6.3) 
81.8% (9/11) 
NWEIG 
100.0% (10/10) 
25.8 
2.0 (1.8-3.0) 
2.6 (1.0-5.0) 
100% (10/10) 
ORENG 
100.0% (6/6) 
7.6 
1.2 (1.0-1.5) 
1.3 (0.1-2.5) 
66.7% (4/6) 
PENNEC 
100.0% (7/7) 
17.5 
2.8 (1.0-4.0) 
2.5 (0.5-4.0) 
71.4% (5/7) 
SETPEG 
100.0% (7/7) 
23.8 
3.0 (2.2-4.0) 
3.4 (1.5-6.0) 
100% (7/7) 
SWEP 
80.0% (4/5) 
12.0 
3.0 (2.0-3.0) 
2.4 (0.0-4.0) 
75% (3/4) 
SWIPE 
85.7% (6/7) 
13.3 
2.0 (1.0-2.8) 
1.9 (0.0-3.9) 
100% (6/6) 
SWTPEG 
100.0% (7/7) 
20.5 
2.8 (2.0-4.0) 
2.9 (2.0-4.5) 
100% (7/7) 
TEN 
100.0% (6/6) 
9.3 
1.9 (1.0-2.0) 
1.5 (0.5-2.0) 
83.3% (5/6) 
WPNN 
85.7% (6/7) 
17.1 
1.6 (0.5-4.0) 
2.4 (0.0-7.0) 
100% (6/6) 
YPEN 
88.9% (8/9) 
21.1 
2.5 (2.0-2.8) 
2.3 (0.0-4.0) 
87.5% (7/8) 
 
 
 

15 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Epilepsy Best Practice Criteria (BPC) – England Only 
38% (42/111) of Trusts in England were running epilepsy clinics to the treatment function code 
(TFC) 223 Best Practice Criteria (BPC) standards. This ﬁgure has decreased over time (Figure 6).   
 
Figure 6: Percentage of Trusts in England receiving TFC 223 Epilepsy Best Practice Criteria 
between 2018 and 2023. 
Table 8: Percentage of Trusts in England receiving TFC 223 Epilepsy Best Practice Criteria, by NHS 
England region.  
 
TFC 223 Epilepsy Best Practice Criteria 
Geographic Region 
Yes  
In development 
No 
N/A 
England 
37.8% (42/111) 
34.2% (38/111) 
18.9% (21/111) 
9.0% (10/111) 
NHS England 
Region 
 
 
 
 
East of England 
33.3% (4/12) 
8.3% (1/12) 
33.3% (4/12) 
25.0% (3/12) 
London 
27.8% (5/18) 
38.9% (7/18) 
11.1% (2/18) 
22.2% (4/18) 
Midlands 
36.8% (7/19) 
26.3% (5/19) 
31.6% (6/19) 
5.3% (1/19) 
North East and 
Yorkshire 
52.4% (11/21) 
38.1% (8/21) 
4.8% (1/21) 
4.8% (1/21) 
North West 
18.8% (3/16) 
56.2% (9/16) 
25.0% (4/16) 
0.0% (0/16) 
South East 
40.0% (6/15) 
33.3% (5/15) 
20.0% (3/15) 
6.7% (1/15) 
South West 
60.0% (6/10) 
30.0% (3/10) 
10.0% (1/10) 
0.0% (0/10) 
 
42%
47%
49%
47%
39%
38%
27%
26%
27%
32%
28%
34%
23%
21%
18%
17%
25%
19%
8%
7%
6%
5%
8%
9%
0%
20%
40%
60%
80%
100%
2018
2019
2020
2021
2022
2023
Yes
In development
No
N/A

16 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Tertiary Provision 
Paediatric Neurology Services 
A total of 97.2 WTE consultant 
paediatric neurologists 
responsible for managing the 
care of children and young 
people with epilepsy, both 
acutely and non-acutely, were 
employed across England and 
Wales in 2023. 20% (23/117) of 
Health Boards and Trusts had at 
least some paediatric 
neurologist WTE, which is an 
increase from 16% (21/128) in 
2022 (Table 9).  
95% (111/117) of Health Boards and 
Trusts had agreed referral pathways 
to tertiary paediatric neurology services (Table 11), which is consistent with previous years. Two 
thirds (65.0%) hosted satellite paediatric neurology clinics in 2023 (Table 12).  
Table 9: Paediatric neurologist whole time equivalent (WTE) by region. 
 
WTE Paediatric Neurologist 
 
Percentage 
with some 
WTE 
Total 
WTE 
Mean WTE 
(Range) 
Excluding HBTs with zero WTE 
Geographic 
Region 
Mean WTE 
(Range)  
Median WTE 
(Inter-quartile 
range) 
England and 
Wales 
19.7% (23/117) 
97.2 
0.8 (0.0-10.6) 
4.2 (0.0-10.6) 
4.0 (2.8-6.0) 
England 
19.8% (22/111) 
94.4 
0.9 (0.0-10.6) 
4.3 (0.0-10.6) 
4.2 (2.8-6.0) 
Wales 
16.7% (1/6) 
2.8 
0.5 (0.0-2.8) 
2.8 (2.8-2.8) 
2.8 (2.8-2.8) 
NHS England 
Region 
 
 
 
 
 
East of England 
8.3% (1/12) 
4.4 
0.4 (0.0-4.4) 
4.4 (4.4-4.4) 
4.4 (4.4-4.4) 
London 
38.9% (7/18) 
31.1 
1.7 (0.0-10.6) 
4.4 (1.7-10.6) 
4.0 (2.8-5.0) 
Midlands 
10.5% (2/19) 
9.0 
0.5 (0.0-6.0) 
4.5 (3.0-6.0) 
4.5 (3.0-6.0) 
North East and 
Yorkshire 
23.8% (5/21) 
16.4 
0.8 (0.0-5.0) 
3.3 (0.0-5.0) 
4.3 (2.6-4.5) 
North West 
25.0% (4/16) 
13.0 
0.8 (0.0-7.2) 
3.2 (1.0-7.2) 
2.4 (1.5-5.0) 
South East 
13.3% (2/15) 
12.5 
0.8 (0.0-6.5) 
6.2 (6.0-6.5) 
6.2 (6.0-6.5) 
South West 
10.0% (1/10) 
8.0 
0.8 (0.0-8.0) 
8.0 (8.0-8.0) 
8.0 (8.0-8.0) 
OPEN UK 
Region 
 
 
 
 
 
18%
17%
20%
20%
16%
20%
0%
20%
40%
60%
80%
100%
2018
2019
2020
2021
2022
2023
Percentage of HB/Ts 
with some WTE
Figure 7: Percentage of Health Boards and Trusts with a 
Paediatric Neurologist employed across England and 
Wales since 2018. 

17 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
BRPNF 
9.1% (1/11) 
6.0 
0.5 (0.0-6.0) 
6.0 (6.0-6.0) 
6.0 (6.0-6.0) 
CEWT 
25.0% (1/4) 
3.0 
0.8 (0.0-3.0) 
3.0 (3.0-3.0) 
3.0 (3.0-3.0) 
EPEN 
9.1% (1/11) 
4.4 
0.4 (0.0-4.4) 
4.4 (4.4-4.4) 
4.4 (4.4-4.4) 
EPIC 
12.5% (1/8) 
2.8 
0.3 (0.0-2.8) 
2.8 (2.8-2.8) 
2.8 (2.8-2.8) 
NTPEN 
33.3% (4/12) 
18.1 
1.5 (0.0-10.6) 
4.5 (1.7-10.6) 
2.9 (2.2-6.8) 
NWEIG 
30.0% (3/10) 
10.2 
1.0 (0.0-7.2) 
3.4 (1.0-7.2) 
2.0 (1.0-7.2) 
ORENG 
16.7% (1/6) 
6.0 
1.0 (0.0-6.0) 
6.0 (6.0-6.0) 
6.0 (6.0-6.0) 
PENNEC 
14.3% (1/7) 
4.3 
0.6 (0.0-4.3) 
4.3 (4.3-4.3) 
4.3 (4.3-4.3) 
SETPEG 
28.6% (2/7) 
9.0 
1.3 (0.0-5.0) 
4.5 (4.0-5.0) 
4.5 (4.0-5.0) 
SWEP 
20.0% (1/5) 
2.8 
0.6 (0.0-2.8) 
2.8 (2.8-2.8) 
2.8 (2.8-2.8) 
SWIPE 
14.3% (1/7) 
8.0 
1.1 (0.0-8.0) 
8.0 (8.0-8.0) 
8.0 (8.0-8.0) 
SWTPEG 
14.3% (1/7) 
4.0 
0.6 (0.0-4.0) 
4.0 (4.0-4.0) 
4.0 (4.0-4.0) 
TEN 
33.3% (2/6) 
9.5 
1.6 (0.0-5.0) 
4.8 (4.5-5.0) 
4.8 (4.5-5.0) 
WPNN 
14.3% (1/7) 
6.5 
0.9 (0.0-6.5) 
6.5 (6.5-6.5) 
6.5 (6.5-6.5) 
YPEN 
22.2% (2/9) 
2.6 
0.3 (0.0-2.6) 
1.9 (0.6-4.8) 
1.3 (0.0-2.6) 
 
Table 10: Percentage of Health Boards and Trusts where paediatric neurology can receive 
referrals from emergency departments (ED) or GP in England and Wales. 
Can receive paediatric neurology 
referrals from ED or GP 
England and 
Wales 
England 
Wales 
Yes 
15.4% (18/117) 
16.2% (18/111) 
0.0% (0/6) 
No 
63.2% (74/117) 
61.3% (68/111) 
100.0% (6/6) 
N/A 
21.4% (25/117) 
22.5% (25/111) 
0.0% (0/6) 
 
Table 11: Percentage of Health Boards and Trusts with agreed referral pathways to paediatric 
neurology by region. 
 
Direct referral pathways to paediatric neurology 
Geographic Region 
Yes 
No 
England and Wales 
94.9% (111/117) 
5.1% (6/117) 
England 
94.6% (105/111) 
5.4% (6/111) 
Wales 
100.0% (6/6) 
0.0% (0/6) 
NHS England Region 
 
 
East of England 
100.0% (12/12) 
0.0% (0/12) 
London 
100.0% (18/18) 
0.0% (0/18) 
Midlands 
89.5% (17/19) 
10.5% (2/19) 
North East and Yorkshire 
95.2% (20/21) 
4.8% (1/21) 
North West 
81.2% (13/16) 
18.7% (3/16) 
South East 
100.0% (15/15) 
0.0% (0/15) 
South West 
100.0% (10/10) 
0.0% (0/10) 
OPEN UK Region 
 
 
BRPNF 
90.9% (10/11) 
9.1% (1/11) 

18 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
CEWT 
75.0% (3/4) 
25.0% (1/4) 
EPEN 
100.0% (11/11) 
0.0% (0/11) 
EPIC 
75.0% (6/8) 
25.0% (2/8) 
NTPEN 
100.0% (12/12) 
0.0% (0/12) 
NWEIG 
90.0% (9/10) 
10.0% (1/10) 
ORENG 
100.0% (6/6) 
0.0% (0/6) 
PENNEC 
85.7% (6/7) 
14.3% (1/7) 
SETPEG 
100.0% (7/7) 
0.0% (0/7) 
SWEP 
100.0% (5/5) 
0.0% (0/5) 
SWIPE 
100.0% (7/7) 
0.0% (0/7) 
SWTPEG 
100.0% (7/7) 
0.0% (0/7) 
TEN 
100.0% (6/6) 
0.0% (0/6) 
WPNN 
100.0% (7/7) 
0.0% (0/7) 
YPEN 
100.0% (9/9) 
0.0% (0/9) 
 
Table 12: Percentage of Health Boards and Trusts host satellite paediatric neurology clinics in 
England and Wales. 
Hosts satellite paediatric 
neurology clinics 
England and 
Wales 
England 
Wales 
Yes 
65.0% (76/117) 
63.1% (70/111) 
100.0% (6/6) 
No 
32.5% (38/117) 
34.2% (38/111) 
0.0% (0/6) 
N/A 
2.6% (3/117) 
2.7% (3/111) 
0.0% (0/6) 
 
Other Services 
The percentage of Health Boards and Trusts that facilitate ketogenic diet services and vagal 
nerve stimulator services has increased since 2022 (Figure 8). 

19 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
 
Figure 8: The percentage of Health Boards and Trusts that can facilitate ketogenic diet and vagal 
nerve stimulator services in England and Wales, between 2018 and 2023. 
Table 13: Percentage of Health Boards and Trusts that could facilitate ketogenic diet and vagal 
nerve stimulator services in England and Wales. 
Other services 
England and 
Wales 
England 
Wales 
Ketogenic diet Commence 
 
 
 
Yes 
16.2% (19/117) 
16.2% (18/111) 
16.7% (1/6) 
No 
83.8% (98/117) 
83.8% (93/111) 
83.3% (5/6) 
Ketogenic diet Review 
 
 
 
Yes  
18.8% (22/117) 
18.9% (21/111) 
16.7% (1/6) 
No 
81.2% (95/117) 
81.1% (90/111) 
83.3% (5/6) 
Vagal nerve stimulator Insertion 
 
 
 
Yes 
12.0% (14/117) 
12.6% (14/111) 
0.0% (0/6) 
No 
88.0% (103/117) 
87.4% (97/111) 
100.0% (6/6) 
Vagal nerve stimulator Review 
 
 
 
Yes 
23.1% (27/117) 
20.7% (23/111) 
66.7% (4/6) 
No 
76.9% (90/117) 
79.3% (88/111) 
33.3% (2/6) 
 
15%
21%
8%
23%
15%
19%
10%
21%
16%
18%
10%
22%
17%
18%
10%
23%
15%
17%
9%
20%
16%
19%
12%
23%
0%
5%
10%
15%
20%
25%
Commence diet
Ongoing dietetic
review
Insertion
Review
Percentage of HB/Ts that could facilitate 
services
2018
2019
2020
2021
2022
2023
Ketogenic Diet 
Vagal Nerve Stimulator 

20 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Investigations 
Figure 9 shows that the percentage of Health Boards and Trusts that could provide epilepsy 
investigation services in England and Wales in 2023. Provision of all investigations either 
increased or remained the same compared to 2022.Whole genome sequencing was introduced 
into the organisational audit dataset for 2023. 
 
 
Figure 9: Percentage of Health Boards and Trusts that could provide investigation services in 
England and Wales.  
 
Table 14: Percentage of Health Boards and trusts that could provide epilepsy investigations in 
England and Wales.  
 
Investigation 
England and 
Wales 
England 
Wales 
12-Lead ECG 
 
 
 
Yes 
94.9% (111/117) 
94.6% (105/111) 
100.0% (6/6) 
No 
5.1% (6/117) 
5.4% (6/111) 
0.0% (0/6) 
Uncertain 
0.0% (0/117) 
0.0% (0/111) 
0.0% (0/6) 
‘Awake’ MRI 
 
 
 
Yes 
95.7% (112/117) 
95.5% (106/111) 
100.0% (6/6) 
No 
4.3% (5/117) 
4.5% (5/111) 
0.0% (0/6) 
Uncertain 
0.0% (0/117) 
0.0% (0/111) 
0.0% (0/6) 
20%
22%
23%
42%
48%
60%
65%
65%
66%
68%
73%
83%
95%
96%
0%
20%
40%
60%
80%
100%
Outpatient video telemetry
Home video telemetry
Inpatient video telemetry
Sedated EEG
24-48h ambulatory EEG
MRI with general anaesthetic
Melatonin induced EEG
Portable EEG on ward area
Sleep-deprived EEG
Standard EEG
MRI with sedation
Whole genome sequencing
12-Lead ECG
Awake' MRI

21 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
MRI with sedation 
 
 
 
Yes 
72.6% (85/117) 
71.2% (79/111) 
100.0% (6/6) 
No 
27.4% (32/117) 
28.8% (32/111) 
0.0% (0/6) 
Uncertain 
0.0% (0/117) 
0.0% (0/111) 
0.0% (0/6) 
MRI with general anaesthetic 
 
 
 
Yes 
59.8% (70/117) 
57.7% (64/111) 
100.0% (6/6) 
No 
40.2% (47/117) 
42.3% (47/111) 
0.0% (0/6) 
Uncertain 
0.0% (0/117) 
0.0% (0/111) 
0.0% (0/6) 
Standard EEG 
 
 
 
Yes 
68.4% (80/117) 
66.7% (74/111) 
100.0% (6/6) 
No 
31.6% (37/117) 
33.3% (37/111) 
0.0% (0/6) 
Uncertain 
0.0% (0/117) 
0.0% (0/111) 
0.0% (0/6) 
Sleep-deprived EEG 
 
 
 
Yes 
65.8% (77/117) 
64.0% (71/111) 
100.0% (6/6) 
No 
34.2% (40/117) 
36.0% (40/111) 
0.0% (0/6) 
Uncertain 
0.0% (0/117) 
0.0% (0/111) 
0.0% (0/6) 
Melatonin induced EEG 
 
 
 
Yes 
65.0% (76/117) 
63.1% (70/111) 
100.0% (6/6) 
No 
35.0% (41/117) 
36.9% (41/111) 
0.0% (0/6) 
Uncertain 
0.0% (0/117) 
0.0% (0/111) 
0.0% (0/6) 
Sedated EEG 
 
 
 
Yes 
41.9% (49/117) 
40.5% (45/111) 
66.7% (4/6) 
No 
55.6% (65/117) 
57.7% (64/111) 
16.7% (1/6) 
Uncertain 
2.6% (3/117) 
1.8% (2/111) 
16.7% (1/6) 
24-48h ambulatory EEG 
 
 
 
Yes 
47.9% (56/117) 
45.9% (51/111) 
83.3% (5/6) 
No 
51.3% (60/117) 
54.1% (60/111) 
0.0% (0/6) 
Uncertain 
0.9% (1/117) 
0.0% (0/111) 
16.7% (1/6) 
Inpatient video telemetry 
 
 
 
Yes 
23.1% (27/117) 
23.4% (26/111) 
16.7% (1/6) 
No 
76.1% (89/117) 
75.7% (84/111) 
83.3% (5/6) 
Uncertain 
0.9% (1/117) 
0.9% (1/111) 
0.0% (0/6) 
Outpatient video telemetry 
 
 
 
Yes 
19.7% (23/117) 
19.8% (22/111) 
16.7% (1/6) 
No 
79.5% (93/117) 
79.3% (88/111) 
83.3% (5/6) 
Uncertain 
0.9% (1/117) 
0.9% (1/111) 
0.0% (0/6) 
Home video telemetry 
 
 
 
Yes 
22.2% (26/117) 
21.6% (24/111) 
33.3% (2/6) 
No 
76.1% (89/117) 
76.6% (85/111) 
66.7% (4/6) 
Uncertain 
1.7% (2/117) 
1.8% (2/111) 
0.0% (0/6) 
Portable EEG on ward area 
 
 
 
Yes 
65.0% (76/117) 
63.1% (70/111) 
100.0% (6/6) 

22 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
No 
35.0% (41/117) 
36.9% (41/111) 
0.0% (0/6) 
Uncertain 
0.0% (0/117) 
0.0% (0/111) 
0.0% (0/6) 
Requesting and consenting of 
Whole Genome Sequencing 
 
 
 
Yes 
82.9% (97/117) 
85.6% (95/111) 
33.3% (2/6) 
No 
12.0% (14/117) 
9.0% (10/111) 
66.7% (4/6) 
Uncertain 
5.1% (6/117) 
5.4% (6/111) 
0.0% (0/6) 

23 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Service contact 
In 2023, 97% (114/117) of Health Boards and Trusts were able to provide specialist advice between 
scheduled reviews, which is consistent with the 2022 audit (Table 15). 60% (68/114) of Health 
Boards and Trusts provided specialist advice on all weekdays for 52 weeks of the year, which is an 
increase from 57% (73/128) in 2022.  
Within the Health Boards and Trusts that could provide specialist advice, initial advice was 
typically provided by an epilepsy specialist nurse (Table 17). In the Health Boards and Trusts that 
selected other, responses indicated a joint response from either the paediatrician or the ESN: 
Table 15: Specialist advice within Health Boards and Trusts in England and Wales. 
Specialist Advice 
England and 
Wales 
England 
Wales 
Clear point of contact for non-
paediatric professionals seeking 
advice 
88.9% (104/117) 
88.3% (98/111) 
100.0% (6/6) 
Provide specialist advice between 
scheduled reviews 
97.4% (114/117) 
97.3% (108/111) 
100.0% (6/6) 
 
Table 16: Of the 114 Health Boards and Trusts that provide specialist advice between scheduled 
reviews, the typical response time and availability of specialist advice in England and Wales. 
Specialist Advice 
England and 
Wales 
England 
Wales 
Typical response time of specialist 
advice 
 
 
 
 
Same weekday 
7.9% (9/114) 
8.3% (9/108) 
0.0% (0/6) 
 
Next weekday 
47.4% (54/114) 
49.1% (53/108) 
16.7% (1/6) 
 
3 – 4 weekdays 
36.8% (42/114) 
35.2% (38/108) 
66.7% (4/6) 
 
Within the working week 
7.9% (9/114) 
7.4% (8/108) 
16.7% (1/6) 
Availability of specialist advice 
 
 
 
Available 52 weeks of the year 
70.2% (80/114) 
69.4% (75/108) 
83.3% (5/6) 
 
Some weekdays 
3.8% (3/80) 
2.7% (2/75) 
20.0% (1/5) 
 
Every weekday 
85.0% (68/80) 
85.3% (64/75) 
80.0% (4/5) 
 
Every weekday and out of 
 
hours 
11.2% (9/80) 
12.0% (9/75) 
0.0% (0/5) 
Not available 52 weeks of the year 
29.8% (34/114) 
30.6% (33/108) 
16.7% (1/6) 
 
Some weekdays 
20.6% (7/34) 
21.2% (7/33) 
0.0% (0/1) 
 
Every weekday 
79.4% (27/34) 
78.8% (26/33) 
100.0% (1/1) 
 
Every weekday and out of 
 
hours 
0.0% (0/34) 
0.0% (0/33) 
0.0% (0/1) 
 

24 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Table 17: Of the Health Boards and Trusts that provide specialist advice between scheduled 
reviews, the professionals who ‘typically’ provide initial specialist advice in England and Wales by 
region.   
 
Professionals who ‘typically’ provide initial specialist advice  
Geographic 
Region 
ESN 
Consultant 
with 
‘expertise in 
epilepsy’ 
Paediatric 
neurologis
t 
Trainee 
Paediatric 
neurologist 
Other 
England and 
Wales 
57.9% (66/114) 
31.6% (36/114) 
0.9% (1/114) 
0.0% (0/114) 
9.6% (11/114) 
England 
57.4% (62/108) 
31.5% (34/108) 
0.9% (1/108) 
0.0% (0/108) 
10.2% (11/108) 
Wales 
66.7% (4/6) 
33.3% (2/6) 
0.0% (0/6) 
0.0% (0/6) 
0.0% (0/6) 
NHS England 
Region 
 
 
 
 
 
East of 
England 
41.7% (5/12) 
58.3% (7/12) 
0.0% (0/12) 
0.0% (0/12) 
0.0% (0/12) 
London 
77.8% (14/18) 
11.1% (2/18) 
5.6% (1/18) 
0.0% (0/18) 
5.6% (1/18) 
Midlands 
58.8% (10/17) 
23.5% (4/17) 
0.0% (0/17) 
0.0% (0/17) 
17.6% (3/17) 
North East 
and Yorkshire 
33.3% (7/21) 
52.4% (11/21) 
0.0% (0/21) 
0.0% (0/21) 
14.3% (3/21) 
North West 
81.2% (13/16) 
12.5% (2/16) 
0.0% (0/16) 
0.0% (0/16) 
6.2% (1/16) 
South East 
50.0% (7/14) 
35.7% (5/14) 
0.0% (0/14) 
0.0% (0/14) 
14.3% (2/14) 
South West 
60.0% (6/10) 
30.0% (3/10) 
0.0% (0/10) 
0.0% (0/10) 
10.0% (1/10) 
OPEN UK 
Region 
 
 
 
 
 
BRPNF 
44.4% (4/9) 
33.3% (3/9) 
0.0% (0/9) 
0.0% (0/9) 
22.2% (2/9) 
CEWT 
50.0% (2/4) 
25.0% (1/4) 
0.0% (0/4) 
0.0% (0/4) 
25.0% (1/4) 
EPEN 
45.5% (5/11) 
54.5% (6/11) 
0.0% (0/11) 
0.0% (0/11) 
0.0% (0/11) 
EPIC 
87.5% (7/8) 
12.5% (1/8) 
0.0% (0/8) 
0.0% (0/8) 
0.0% (0/8) 
NTPEN 
83.3% (10/12) 
8.3% (1/12) 
8.3% (1/12) 
0.0% (0/12) 
0.0% (0/12) 
NWEIG 
80.0% (8/10) 
10.0% (1/10) 
0.0% (0/10) 
0.0% (0/10) 
10.0% (1/10) 
ORENG 
33.3% (2/6) 
50.0% (3/6) 
0.0% (0/6) 
0.0% (0/6) 
16.7% (1/6) 
PENNEC 
42.9% (3/7) 
57.1% (4/7) 
0.0% (0/7) 
0.0% (0/7) 
0.0% (0/7) 
SETPEG 
71.4% (5/7) 
14.3% (1/7) 
0.0% (0/7) 
0.0% (0/7) 
14.3% (1/7) 
SWEP 
60.0% (3/5) 
40.0% (2/5) 
0.0% (0/5) 
0.0% (0/5) 
0.0% (0/5) 
SWIPE 
57.1% (4/7) 
42.9% (3/7) 
0.0% (0/7) 
0.0% (0/7) 
0.0% (0/7) 
SWTPEG 
71.4% (5/7) 
28.6% (2/7) 
0.0% (0/7) 
0.0% (0/7) 
0.0% (0/7) 
TEN 
33.3% (2/6) 
50.0% (3/6) 
0.0% (0/6) 
0.0% (0/6) 
16.7% (1/6) 
WPNN 
50.0% (3/6) 
16.7% (1/6) 
0.0% (0/6) 
0.0% (0/6) 
33.3% (2/6) 
YPEN 
33.3% (3/9) 
44.4% (4/9) 
0.0% (0/9) 
0.0% (0/9) 
22.2% (2/9) 
 

25 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Transition 
Pathways 
Table 18 shows that in 2023, 91% (106/117) of Health Boards and Trusts had an agreed referral 
pathway to adult services and 72% (84/117) used structured transition resources (e.g. Ready 
Steady Go), which is an increase from 88% (112/128) and 66% (84/128) respectively in 2022.  
Table 18: Percentage of Health Boards and Trusts with an agreed referral pathway to adult 
services and using structured resources to support transition by region. 
Geographic Region 
Agreed referral pathway 
to adult services 
Using structured 
resources to support 
transition 
England and Wales 
90.6% (106/117) 
71.8% (84/117) 
England 
90.1% (100/111) 
73.9% (82/111) 
Wales 
100.0% (6/6) 
33.3% (2/6) 
NHS England Region 
 
 
East of England 
91.7% (11/12) 
75.0% (9/12) 
London 
94.4% (17/18) 
77.8% (14/18) 
Midlands 
89.5% (17/19) 
63.2% (12/19) 
North East and Yorkshire 
85.7% (18/21) 
85.7% (18/21) 
North West 
93.8% (15/16) 
68.8% (11/16) 
South East 
86.7% (13/15) 
73.3% (11/15) 
South West 
90.0% (9/10) 
70.0% (7/10) 
OPEN UK Region 
 
 
BRPNF 
81.8% (9/11) 
54.5% (6/11) 
CEWT 
100.0% (4/4) 
50.0% (2/4) 
EPEN 
90.9% (10/11) 
81.8% (9/11) 
EPIC 
87.5% (7/8) 
37.5% (3/8) 
NTPEN 
91.7% (11/12) 
83.3% (10/12) 
NWEIG 
100.0% (10/10) 
90.0% (9/10) 
ORENG 
83.3% (5/6) 
66.7% (4/6) 
PENNEC 
57.1% (4/7) 
85.7% (6/7) 
SETPEG 
100.0% (7/7) 
57.1% (4/7) 
SWEP 
100.0% (5/5) 
40.0% (2/5) 
SWIPE 
85.7% (6/7) 
85.7% (6/7) 
SWTPEG 
100.0% (7/7) 
85.7% (6/7) 
TEN 
100.0% (6/6) 
83.3% (5/6) 
WPNN 
85.7% (6/7) 
57.1% (4/7) 
YPEN 
100.0% (9/9) 
88.9% (8/9) 
 

26 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
 
Transition Clinics 
In 2023, 56% (65/117) of Health Boards and Trusts in England and Wales had an outpatient 
transition clinic speciﬁcally for young people with epilepsy, which is an increase from 45% 
(58/128) in 2022. The mean age that clinics accepted young people was 15 years, which is 
consistent with previous years (Table 19). 
Table 19: Percentage of Health Boards and Trusts with an outpatient transition clinic speciﬁcally 
for young people with epilepsies, and the age these clinics typically accept patients, by region. 
(BPC) 
 
Outpatient 
clinic 
speciﬁcally for 
young people 
with epilepsies  
Mean (Range) 
age clinics 
typically accept 
patients  
Median (inter-
quartile range) 
age clinics 
typically accept 
patients 
Geographic Region 
England and Wales 
55.6% (65/117) 
15 (12-18) 
15 (14-16) 
England 
55.0% (61/111) 
15 (12-18) 
15 (14-16) 
Wales 
66.7% (4/6) 
16 (14-16) 
16 (15-16) 
NHS England Region 
 
 
 
East of England 
58.3% (7/12) 
14 (13-16) 
14 (13-16) 
London 
55.6% (10/18) 
15 (12-16) 
16 (14-16) 
Midlands 
63.2% (12/19) 
15 (12-16) 
15 (14-16) 
North East and Yorkshire 
33.3% (7/21) 
14 (13-16) 
14 (13-15) 
North West 
68.8% (11/16) 
15 (12-18) 
14 (14-16) 
South East 
53.3% (8/15) 
15 (12-18) 
16 (14-16) 
South West 
60.0% (6/10) 
16 (15-18) 
16 (16-16) 
OPEN UK Region 
 
 
 
BRPNF 
54.5% (6/11) 
15 (14-16) 
15 (14-16) 
CEWT 
75.0% (3/4) 
13 (12-15) 
13 (12-15) 
EPEN 
54.5% (6/11) 
14 (13-16) 
14 (13-16) 
EPIC 
62.5% (5/8) 
15 (14-18) 
14 (14-15) 
NTPEN 
33.3% (4/12) 
14 (12-16) 
14 (12-15) 
NWEIG 
80.0% (8/10) 
14 (12-16) 
14 (14-16) 
ORENG 
50.0% (3/6) 
14 (13-16) 
14 (13-16) 
PENNEC 
42.9% (3/7) 
15 (13-16) 
15 (13-16) 
SETPEG 
71.4% (5/7) 
15 (12-16) 
16 (14-16) 
SWEP 
60.0% (3/5) 
16 (16-16) 
16 (16-16) 
SWIPE 
57.1% (4/7) 
16 (15-18) 
16 (16-17) 
SWTPEG 
85.7% (6/7) 
16 (14-18) 
16 (16-16) 
TEN 
33.3% (2/6) 
15 (14-16) 
15 (14-16) 
WPNN 
57.1% (4/7) 
15 (13-16) 
16 (14-16) 
YPEN 
33.3% (3/9) 
13 (13-14) 
13 (13-14) 
 

27 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Adult Professionals 
Table 20 shows that in 2023, 68% (80/117) of Health Boards and Trusts had outpatient transition 
services involving both adult and paediatric professionals, which is an increase from 64% (82/128) 
in 2022. Of these, 61% (49/80) provided several joint appointments (Table 21). In the Health 
Boards and Trusts that selected other, responses included: 
• 
This clinic has started at an ESN level; the pathway is established but not yet formally 
agreed.   
• 
Mostly single joint appointment, but for some patients 2 or 3 in the last year. 
• 
a single joint appointment with paediatric and adult neurologist based at the adult centre  
• 
Joint with adult but ﬂexible 
• 
Adult and Paediatric nurse specialist- now limited during COVID and stafﬁng issue nurse 
led clinic.  
• 
Teenage Clinic with adult ESN also present 
• 
A ﬂexible approach involving Adult and Paediatric ESN's happens only for children @ 
UHND. 
Adult professionals involved in transition were typically adult neurologists and epilepsy specialist 
nurses (Table 22). In the Health Boards and Trusts that selected other, responses included: 
• 
Consultant Psychiatrist 
• 
Adult LD team 
• 
GP and Adult Neurologist 
• 
Adult ld team; adult rehab; GP 
• 
GP 
• 
Transition Nurse 
• 
We give details of neurology specialist nurse contact and often offer ESN appointment at 
neuro hospt 
• 
Neurologist if needed 
• 
ESN 
• 
Disability (Sometimes) 
• 
Paediatric Epilepsy Nurse Specialist 
• 
Transition nurses 
• 
LD transition nurses 
• 
Discussion with adult neurologist and neurophysiologist in Neurophysiology meeting 
• 
Epilepsy specialist midwife 
• 
Adolescent Nurse 
• 
GP 
• 
Adult learning disability nurse 
• 
Adult psychiatrist with interest in learning difﬁculties 
• 
Adult neuro/LD consultant involved though not in clinic 
• 
Transition nurse 
• 
Paediatric ESN 
• 
Education/ social care/ LD consultant/ Transition nurse/ Therapy teams 
• 
Speciﬁc adolescent transition clinic regionally, locally appointed transition nurse (new) 
• 
Neurodisability transition nurse and transition to adult services nurse. 
 

28 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Table 20: Percentage of Health Boards and Trusts with outpatient services for young people with 
epilepsy where there is presence of both adult and paediatric professionals by region. 
 
Outpatient service involving adult and paediatric professionals 
Geographic Region 
England and Wales 
68.4% (80/117) 
England 
67.6% (75/111) 
Wales 
83.3% (5/6) 
NHS England Region 
 
East of England 
83.3% (10/12) 
London 
88.9% (16/18) 
Midlands 
57.9% (11/19) 
North East and Yorkshire 
52.4% (11/21) 
North West 
68.8% (11/16) 
South East 
60.0% (9/15) 
South West 
70.0% (7/10) 
OPEN UK Region 
 
BRPNF 
54.5% (6/11) 
CEWT 
50.0% (2/4) 
EPEN 
81.8% (9/11) 
EPIC 
75.0% (6/8) 
NTPEN 
83.3% (10/12) 
NWEIG 
70.0% (7/10) 
ORENG 
66.7% (4/6) 
PENNEC 
57.1% (4/7) 
SETPEG 
71.4% (5/7) 
SWEP 
80.0% (4/5) 
SWIPE 
85.7% (6/7) 
SWTPEG 
85.7% (6/7) 
TEN 
33.3% (2/6) 
WPNN 
42.9% (3/7) 
YPEN 
66.7% (6/9) 
 
Table 21: Of the Health Boards and Trusts with an outpatient service where there is a presence of 
both adult and paediatric professionals, the structure of this service and the estimated 
percentage of young people transitioned to adult services through this joint professional process 
in England and Wales. 
Service 
England and 
Wales 
England 
Wales 
Structure of outpatient service 
involving adult and paediatric 
professionals 
 
 
 
 
Single joint appointments 
61.2% (49/80) 
62.7% (47/75) 
40.0% (2/5) 

29 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
 
Mixed (joint and individual) 
23.8% (19/80) 
22.7% (17/75) 
40.0% (2/5) 
 
Several joint appointments 
6.2% (5/80) 
5.3% (4/75) 
20.0% (1/5) 
 
Other 
8.8% (7/80) 
9.3% (7/75) 
0.0% (0/5) 
Estimated percentage of young 
people transferred to adult 
services through a joint 
professional process 
 
 
 
 
Mean (Range) 
77.2 (1.0-100.0) 
78.3 (1.0-100.0) 
60.6 (30.0-100.0) 
 
Median (Inter-quartile range) 
90.0 (60.0-100.0) 
90.0 (70.0-100.0) 
50.0 xx-xxxx-xxxx) 
 
 
Figure 10: Adult professionals routinely involved in transition. 
Table 22: Percentage of Health Boards and Trusts with adult professionals routinely involved in 
transition or transfer to adult services in England and Wales. 
Adult professionals 
England and 
Wales 
England 
Wales 
Adult ESN 
68.4% (80/117) 
68.5% (76/111) 
66.7% (4/6) 
Adult learning difﬁculty ESN 
17.9% (21/117) 
18.0% (20/111) 
16.7% (1/6) 
Adult neurologist 
85.5% (100/117) 
84.7% (94/111) 
100.0% (6/6) 
Youth worker 
4.3% (5/117) 
4.5% (5/111) 
0.0% (0/6) 
Other 
21.4% (25/117) 
20.7% (23/111) 
33.3% (2/6) 
 
21%
4%
18%
68%
85%
0%
20%
40%
60%
80%
100%
Other
Youth Worker
Adult Learning Difficulty ESN
Adult ESN
Adult Neurologist

30 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Mental Health and Neurodevelopment 
Mental Health 
In 2023, 30% (36/117) of Health Boards and Trusts routinely, formally screened for mental health 
disorders, which is an increase from 20% (25/128) in 2022 (Table 23). Of these, the majority used 
the Strengths and Difﬁculties Questionnaire or other questionnaires (Table 24). Other responses 
included:  
• 
PI-ED 
• 
York Questionnaire, Vandebilt and department behaviour assessment questionnaire 
• 
Locally designed emotional wellbeing questionnaire 
• 
Local wellbeing questionnaire 
• 
Wellness questionnaire 
• 
Wellbeing Qs 
• 
PI-ED 
• 
Mental health questionnaire 
• 
PHQ 4 
• 
Nice signs and symptoms, CHECC of ASD checklist, CHECC - Child and young person 
Epilepsy Concerns Checklist  
• 
Mental health questionnaire 
• 
Locally prepared questionnaire 
• 
We are piloting an emotional well being questionnaire developed with jointly with 
psychology 
• 
RCADS-Trial stage  
• 
The wheel. 
Table 25 shows that 27% (31/117) of Health boards and Trusts did not have any agreed mental 
health referral pathways in 2023, while 69% (81/117) had referral pathways for anxiety disorders 
and 69% (80/117) had referral pathways for mood disorders. 8% (9/117) had referral pathways for 
other mental health disorders, which included: 
• 
ADHD 
• 
Referral to psychology for difﬁculty in coping with diagnosis for patient and family. 
Referral to CAMHS for other mental health concerns. 
• 
Pathways in place with CAMHS services for mental health disorders; pathway in place for 
YP with anxiety relating to medical disorders including epilepsy 
• 
Mental health support via in house Dramatherapy service 
• 
We have a ﬂexible approach with in-house mental health and adolescent medicine teams 
• 
ADHD 
• 
Children can be referred to CAHMS or clinical psychology depending on clinical needs  
• 
Referrals to CAMHS and Psychology support 
• 
Referral to Local Healthy Young Minds team. 
Table 26 shows that in 2023, 18% (21/117) of Health Boards and Trusts facilitated mental health 
provision within epilepsy clinics, which is a decrease from 19% (24/128) in 2022. 68% (80/117) did 
not facilitate mental health provision, nor had an action plan in place to introduce mental health 
provision. 

31 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Of the 21 Health Boards and Trusts that provided co-located mental healthcare, 57% (12/21) 
provided co-located care through epilepsy clinics with mental health professionals present and 
71.4% (15/21) re in held MDT meetings with mental health professionals present(Table 27). In the 
Health Boards and Trusts that selected other, responses included: 
• 
Discussion of individual cases at MDT and onward referral to psychology 
• 
Clinical Psychologist 
• 
Child psychiatry clinics where epilepsy specialists or ESN join to see pt on one site of our 
Trust 
• 
Joint clinics with clinic psychologist with speciﬁc role for paediatric epilepsy 
• 
We have access to psychology, psychiatry and psychotherapy on site. Some clinics 
together. 
• 
Through referrals and liaison with CAMHS 
• 
Limited psychology support for children with chronic health needs including epilepsy 
• 
Psychologist post - unable to appoint ! 
• 
Patients concern raised - consultant referral of cases 
• 
Clinical psychology service. 
 
Table 23: Percentage of Health Boards and Trusts that routinely, formally screen for mental 
health disorders by region. 
Geographic Region 
Provides formal screening for mental health 
disorders  
England and Wales 
30.8% (36/117) 
England 
31.5% (35/111) 
Wales 
16.7% (1/6) 
NHS England Region 
 
East of England 
25.0% (3/12) 
London 
33.3% (6/18) 
Midlands 
42.1% (8/19) 
North East and Yorkshire 
42.9% (9/21) 
North West 
18.8% (3/16) 
South East 
26.7% (4/15) 
South West 
20.0% (2/10) 
OPEN UK Region 
 
BRPNF 
36.4% (4/11) 
CEWT 
25.0% (1/4) 
EPEN 
27.3% (3/11) 
EPIC 
12.5% (1/8) 
NTPEN 
33.3% (4/12) 
NWEIG 
30.0% (3/10) 
ORENG 
16.7% (1/6) 
PENNEC 
57.1% (4/7) 

32 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
SETPEG 
28.6% (2/7) 
SWEP 
20.0% (1/5) 
SWIPE 
28.6% (2/7) 
SWTPEG 
28.6% (2/7) 
TEN 
33.3% (2/6) 
WPNN 
28.6% (2/7) 
YPEN 
44.4% (4/9) 
 
Table 24: Percentage of Health Boards and Trusts that use each mental health screening 
questionnaire in England and Wales. 
Screening questionnaire 
England and 
Wales 
England 
Wales 
BDI – Beck Depression Inventory 
0.9% (1/117) 
0.9% (1/111) 
0.0% (0/6) 
Connor’s questionnaire 
6.0% (7/117) 
6.3% (7/111) 
0.0% (0/6) 
Emotional thermometers tool 
0.0% (0/117) 
0.0% (0/111) 
0.0% (0/6) 
GAD – Generalised anxiety disorder 
0.9% (1/117) 
0.0% (0/111) 
16.7% (1/6) 
GAD 2 – Generalised anxiety 
disorder 2 
0.0% (0/117) 
0.0% (0/111) 
0.0% (0/6) 
GAD 7 – Generalised anxiety 
disorder 7 
0.0% (0/117) 
0.0% (0/111) 
0.0% (0/6) 
HADS – Hospital Anxiety and 
Depression Scale 
0.0% (0/117) 
0.0% (0/111) 
0.0% (0/6) 
MFQ – Mood and Feelings 
Questionnaire (Child, Parent, Adult 
versions) 
0.0% (0/117) 
0.0% (0/111) 
0.0% (0/6) 
NDDI-E – Neurological Disorders  
0.0% (0/117) 
0.0% (0/111) 
0.0% (0/6) 
PHQ – Patient Health Questionnaire, 
PHQ2, PHQ9 
1.7% (2/117) 
0.9% (1/111) 
16.7% (1/6) 
SDQ – Strength and Difﬁculties 
Questionnaire) 
11.1% (13/117) 
11.7% (13/111) 
0.0% (0/6) 
Other 
12.8% (15/117) 
12.6% (14/111) 
16.7% (1/6) 
None of the above 
2.6% (3/117) 
2.7% (3/111) 
0.0% (0/6) 
 
Table 25: Percentage of Health Boards and Trusts with agreed referral pathways for mental 
health concerns and able to refer to mental health assessments in England and Wales. (BPC) 
Referral pathways 
England and 
Wales 
England 
Wales 
Agreed Referral Pathways 
 
 
 
Anxiety 
69.2% (81/117) 
70.3% (78/111) 
50.0% (3/6) 
Mood disorders 
68.4% (80/117) 
69.4% (77/111) 
50.0% (3/6) 
Non-epileptic attack disorders 
53.0% (62/117) 
55.0% (61/111) 
16.7% (1/6) 
Other 
7.7% (9/117) 
7.2% (8/111) 
16.7% (1/6) 
None 
26.5% (31/117) 
25.2% (28/111) 
50.0% (3/6) 

33 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Able to Refer for Assessment 
 
 
 
Clinical psychology assessment 
82.1% (96/117) 
81.1% (90/111) 
100.0% (6/6) 
Educational psychology assessment 
44.4% (52/117) 
42.3% (47/111) 
83.3% (5/6) 
Formal developmental assessment 
88.0% (103/117) 
87.4% (97/111) 
100.0% (6/6) 
Neuropsychology assessment 
48.7% (57/117) 
50.5% (56/111) 
16.7% (1/6) 
Psychiatric assessment 
88.0% (103/117) 
87.4% (97/111) 
100.0% (6/6) 
None of the above 
4.3% (5/117) 
4.5% (5/111) 
0.0% (0/6) 
 
Table 26: Percentage of Health Boards Trusts that facilitate mental health provision within 
epilepsy clinics or have an action plan describing steps towards co-located mental health 
provision within epilepsy clinics by region. (BPC) 
 
Facilitates Mental Health Provision within Epilepsy 
Clinics 
Geographic Region 
Yes 
No 
Action plan 
No action plan 
England and Wales 
17.9% (21/117) 
13.7% (16/117) 
68.4% (80/117) 
England 
18.9% (21/111) 
13.5% (15/111) 
67.6% (75/111) 
Wales 
0.0% (0/6) 
16.7% (1/6) 
83.3% (5/6) 
NHS England Region 
 
 
 
East of England 
33.3% (4/12) 
8.3% (1/12) 
58.3% (7/12) 
London 
27.8% (5/18) 
11.1% (2/18) 
61.1% (11/18) 
Midlands 
5.3% (1/19) 
15.8% (3/19) 
78.9% (15/19) 
North East and Yorkshire 
19.0% (4/21) 
14.3% (3/21) 
66.7% (14/21) 
North West 
25.0% (4/16) 
12.5% (2/16) 
62.5% (10/16) 
South East 
13.3% (2/15) 
20.0% (3/15) 
66.7% (10/15) 
South West 
10.0% (1/10) 
10.0% (1/10) 
80.0% (8/10) 
OPEN UK Region 
 
 
 
BRPNF 
9.1% (1/11) 
9.1% (1/11) 
81.8% (9/11) 
CEWT 
0.0% (0/4) 
25.0% (1/4) 
75.0% (3/4) 
EPEN 
36.4% (4/11) 
9.1% (1/11) 
54.5% (6/11) 
EPIC 
37.5% (3/8) 
12.5% (1/8) 
50.0% (4/8) 
NTPEN 
25.0% (3/12) 
8.3% (1/12) 
66.7% (8/12) 
NWEIG 
10.0% (1/10) 
20.0% (2/10) 
70.0% (7/10) 
ORENG 
0.0% (0/6) 
0.0% (0/6) 
100.0% (6/6) 
PENNEC 
14.3% (1/7) 
14.3% (1/7) 
71.4% (5/7) 
SETPEG 
28.6% (2/7) 
42.9% (3/7) 
28.6% (2/7) 
SWEP 
0.0% (0/5) 
0.0% (0/5) 
100.0% (5/5) 
SWIPE 
0.0% (0/7) 
14.3% (1/7) 
85.7% (6/7) 
SWTPEG 
14.3% (1/7) 
14.3% (1/7) 
71.4% (5/7) 
TEN 
0.0% (0/6) 
16.7% (1/6) 
83.3% (5/6) 
WPNN 
28.6% (2/7) 
0.0% (0/7) 
71.4% (5/7) 
YPEN 
33.3% (3/9) 
22.2% (2/9) 
44.4% (4/9) 

34 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
 
Table 27: Of the Health Boards and Trusts that provide co-located mental health provision, the 
structure of this provision by region. 
 
Type of Co-located Mental Health Provision 
Geographic Region 
Epilepsy clinics 
where mental health 
professionals can 
provide direct co-
located clinical care 
MDT meetings where 
epilepsy and mental 
health professionals 
can discuss 
individual patients 
Other 
England and Wales 
57.1% (12/21) 
71.4% (15/21) 
47.6% (10/21) 
England 
57.1% (12/21) 
71.4% (15/21) 
47.6% (10/21) 
Wales 
00% (0/0) 
00% (0/0) 
00% (0/0) 
NHS England 
Region 
 
 
 
East of England 
50.0% (2/4) 
100.0% (4/4) 
25.0% (1/4) 
London 
80.0% (4/5) 
80.0% (4/5) 
60.0% (3/5) 
Midlands 
N/A 
N/A 
N/A 
North East and 
Yorkshire 
50.0% (2/4) 
100.0% (4/4) 
25.0% (1/4) 
North West 
20.0% (1/5) 
20.0% (1/5) 
60.0% (3/5) 
South East 
100.0% (2/2) 
100.0% (2/2) 
0.0% (0/2) 
South West 
100.0% (1/1) 
0.0% (0/1) 
100.0% (1/1) 
OPEN UK Region 
 
 
 
BRPNF 
0.0% (0/1) 
0.0% (0/1) 
100.0% (1/1) 
CEWT 
0% (0/0) 
0%  (0/0) 
0%  (0/0) 
EPEN 
50.0% (2/4) 
100.0% (4/4) 
25.0% (1/4) 
EPIC 
33.3% (1/3) 
33.3% (1/3) 
66.7% (2/3) 
NTPEN 
66.7% (2/3) 
66.7% (2/3) 
66.7% (2/3) 
NWEIG 
0.0% (0/1) 
0.0% (0/1) 
100.0% (1/1) 
ORENG 
0%  (0/0) 
0%  (0/0) 
0%  (0/0) 
PENNEC 
100.0% (1/1) 
100.0% (1/1) 
0.0% (0/1) 
SETPEG 
100.0% (2/2) 
100.0% (2/2) 
50.0% (1/2) 
SWEP 
0%  (0/0) 
0%  (0/0) 
0%  (0/0) 
SWIPE 
0%  (0/0) 
0%  (0/0) 
0%  (0/0) 
SWTPEG 
100.0% (1/1) 
100.0% (1/1) 
0.0% (0/1) 
TEN 
0%  (0/0) 
0%  (0/0) 
0%  (0/0) 
WPNN 
100.0% (2/2) 
50.0% (1/2) 
50.0% (1/2) 
YPEN 
33.3% (1/3) 
100.0% (3/3) 
33.3% (1/3) 
 

35 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
 
Neurodevelopment 
Table 28 shows that in 2023, 31% (36/117) of Health Boards and Trusts routinely, formally screened 
for neurodevelopmental conditions, and the majority had agreed referral criteria for ADHD, ASD, 
Behavioural difﬁculties, Developmental Coordinator Disorder, and Intellectual Disability/Global 
Developmental Delay. Of the Health Boards and Trusts and had agreed referral criteria,  the ‘other 
neurodevelopmental conditions’ responses included: 
• 
Cerebral Palsy 
• 
Genetics 
• 
Space neurodevelopmental team referral pathways 
• 
Challenging behaviour associated with severe learning difﬁculties 
• 
CP, development delay, neuromuscular 
• 
Referral is to community paediatric service who will direct referral to appropriate pathway 
• 
Conditions details are not seen within our health board 
• 
Developmental impairment 
• 
Referral is to the local services by us - usually Camden and Islington and we have monthly 
MDT to discuss cases 
• 
Tics/tourettes 
• 
Can be referred for developmental problems but not as BPC criteria 
• 
DCD 
• 
Developmental Delay.  
Table 28: Percentage of Health Boards and Trusts that routinely, formally screen for 
neurodevelopmental conditions and with agreed referral criteria for neurodevelopmental 
conditions in England and Wales. (BPC) 
 
England and 
Wales 
England 
Wales 
Formal screening for 
neurodevelopmental conditions 
30.8% (36/117) 
31.5% (35/111) 
16.7% (1/6) 
Agreed Referral Criteria 
 
 
 
ADHD 
65.0% (76/117) 
64.9% (72/111) 
66.7% (4/6) 
ASD 
86.3% (101/117) 
85.6% (95/111) 
100.0% (6/6) 
Behaviour difﬁculties 
69.2% (81/117) 
69.4% (77/111) 
66.7% (4/6) 
Developmental coordination 
disorder 
65.8% (77/117) 
65.8% (73/111) 
66.7% (4/6) 
Intellectual disability/Global 
developmental delay 
70.1% (82/117) 
68.5% (76/111) 
100.0% (6/6) 
Learning disabilities 
39.3% (46/117) 
38.7% (43/111) 
50.0% (3/6) 
Other 
11.1% (13/117) 
9.0% (10/111) 
50.0% (3/6) 
None of the above 
11.1% (13/117) 
11.7% (13/111) 
0.0% (0/6) 
 

36 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Care planning 
Comprehensive care planning for children and young people with epilepsy was routinely 
undertaken in 91% (106/117) of Health Boards and Trusts in England and Wales (Table 29). Figure 
11 shows how this ﬁgure has changed over time.  
 
 
Figure 11: Health boards and Trusts that routinely undertake comprehensive care planning for 
children and young people with epilepsy between 2018 and 2023.  
Table 29: Percentage of Health Boards and Trusts that routinely undertake comprehensive care 
planning for children and young people with epilepsy by region. (BPC) 
Geographic Region 
 Routinely undertake comprehensive care planning 
England and Wales 
90.6% (106/117) 
England 
91.9% (102/111) 
Wales 
66.7% (4/6) 
NHS England Region 
 
East of England 
91.7% (11/12) 
London 
94.4% (17/18) 
Midlands 
89.5% (17/19) 
North East and 
Yorkshire 
90.5% (19/21) 
North West 
93.8% (15/16) 
South East 
86.7% (13/15) 
South West 
100.0% (10/10) 
OPEN UK Region 
 
BRPNF 
81.8% (9/11) 
CEWT 
100.0% (4/4) 
77%
80%
90%
89%
90%
91%
0%
20%
40%
60%
80%
100%
2018
2019
2020
2021
2022
2023

37 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
EPEN 
90.9% (10/11) 
EPIC 
87.5% (7/8) 
NTPEN 
91.7% (11/12) 
NWEIG 
100.0% (10/10) 
ORENG 
83.3% (5/6) 
PENNEC 
85.7% (6/7) 
SETPEG 
100.0% (7/7) 
SWEP 
60.0% (3/5) 
SWIPE 
100.0% (7/7) 
SWTPEG 
100.0% (7/7) 
TEN 
83.3% (5/6) 
WPNN 
85.7% (6/7) 
YPEN 
100.0% (9/9) 

38 
Epilepsy12: Organisational audit national and regional results. Round 4, 2023  
Patient database or register 
In 2023, 44% (51/117) of Health Boards and Trusts maintained a database of children with epilepsy, 
separate to Epilepsy12, in England and Wales (Table 30). This is an increase from 42% (54/128) in 
2022. Figure 12 shows how the percentage of Health Boards and Trusts maintaining a patient 
database has changed over time.  
 
Figure 12: Health Boards and Trusts that maintain a database or register of children with 
epilepsies, apart from Epilepsy12 between 2018 and 2023. 
Table 30: Percentage of Health Boards and Trusts that maintain a database or register of children 
with epilepsy separate to Epilepsy12 in England and Wales. 
Patient database or register 
England and 
Wales 
England 
Wales 
Yes, for all children 
43.6% (51/117) 
45.9% (51/111) 
0.0% (0/6) 
Yes, for some children 
39.3% (46/117) 
38.7% (43/111) 
50.0% (3/6) 
No 
17.1% (20/117) 
15.3% (17/111) 
50.0% (3/6) 
 
29%
34%
34%
36%
43%
44%
39%
40%
42%
44%
41%
39%
32%
26%
24%
20%
17%
17%
0%
20%
40%
60%
80%
100%
2018
2019
2020
2021
2022
2023
Yes, for all children
Yes, for some children
No