Appendix A - Epilepsy12 Organisational audit report 2021
Source: data.gov.uk (2023-03-28)

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

1 

 2 
Contents 
 
Participation 
 
 
 
 
 
 
 
2 
Workforce  
 
 
 
 
 
 
 
4 
Clinic configuration 
 
 
 
 
 
 
15 
Tertiary services  
 
 
 
 
 
 
20 
Other services 
 
 
 
 
 
 
 
24 
Investigations 
 
 
 
 
 
 
 
27 
Service contact  
 
 
 
 
 
 
33 
Transition  
 
 
 
 
 
 
 
41 
Mental health 
 
 
 
 
 
 
 
49 
Neurodevelopmental support 
 
 
 
 
59 
Care planning 
 
 
 
 
 
 
 
61 
Patient registries  
 
 
 
 
 
 
63 
Findings by OPEN UK regional network 
 
 
 
65 
 

 3 
Participation 
The OPEN UK Regional Paediatric Epilepsy Networks are named below. The abbreviated regional 
network names appear in the regional network results of both the clinical and organisational 
audits in this report.    
  
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  
SPEN  
Scottish Paediatric Epilepsy Network  
SWEP  
South Wales Epilepsy Forum  
SWIPE  
South West Interest Group Paediatric Epilepsy  
SWTPEG  
South West Thames Paediatric Epilepsy Group  
TEN  
Trent Epilepsy Network  
WPNN  
Wessex Paediatric Neurosciences Network  
YPEN  
Yorkshire Paediatric Neurology Network  
  
 
Table 1 provides a breakdown of Epilepsy12 Round 3, 2021 Organisational audit participation by 
Paediatric Epilepsy Networks and by country. 
• 
115 out of 144 (80%) registered Health Boards and Trusts submitted and locked 
November 2021 Organisational audit data.  
• 
82% (119/145), 94% (136/145) and 100% (148/148) of registered Health Boards and Trusts 
submitted and locked 2020, 2019 and 2018 Organisational audit data respectively. 
 
 
 

 4 
Table 1: Epilepsy12 Round 3 2021 Organisational Audit participation by Paediatric Epilepsy 
Networks and by country. 
Country/network 
Number of registered T/HBs 
Number of Ts/HBs that have 
submitted and locked 2021 
organisational audit data 
England and Wales 
144 
80% (115/144) 
England 
138 
79% (109/138) 
Wales 
6 
100% (6/6) 
  
 
BRPNF  
14 
86% (12/14) 
CEWT  
5 
80% (4/5) 
EPEN  
13 
62% (8/13) 
EPIC  
8 
88% (7/8) 
NTPEN  
18 
83% (15/18) 
NWEIG  
12 
75% (9/12) 
ORENG  
7 
100% (7/7) 
PENNEC  
8 
88% (7/8) 
SETPEG  
10 
60% (6/10) 
SWEP  
5 
100% (5/5) 
SWIPE  
11 
73% (8/11) 
SWTPEG  
8 
88% (7/8) 
TEN  
7 
71% (5/7) 
WPNN  
9 
67% (6/9) 
YPEN  
9 
100% (9/9) 
 
 
Workforce 
Consultant paediatrician 
 
Table 2 shows the total whole time equivalent (WTE) for general paediatric consultants 
employed across England and Wales was 1964.6. There was a total of 279.5 whole time 
equivalent (WTE) paediatric consultants with 'expertise in epilepsy' employed across England 
and Wales and is equivalent to 14% (279.5 /1964.6) of the total reported WTE general paediatric 
(consultant or associate specialist) workforce, (Table 3). 99% (114/115) of Health Boards and Trusts 
employed a consultant paediatrician with 'expertise in epilepsy', this ranged from 0.6 WTE to 11.0 

 5 
WTE, (Table 4). In 10% (11/115) of Health Boards and Trusts, there was no defined paediatric 
epilepsy clinical lead, (Table 5).   
 
Figure 1 shows a comparison of the mean whole-time equivalent consultant paediatrician with 
expertise in epilepsy employed across England and Wales in Round 1, Round 2, Round 3 April 
2018, Round 3 November 2019, Round 3 November 2020 and Round 3 November 2021. 
 
Figure 1: Mean whole time equivalent consultant paediatrician with ‘expertise in epilepsy’ employed in 
England and Wales in Round 1, Round 2, Round 3 April 2018, Round 3 November 2019, Round 3 November 
2020 and Round 3 November 2021. 
1.8
1.8
2.1
2.3
2.3
2.4
0.0
0.5
1.0
1.5
2.0
2.5
3.0
Round 1
Nov 2009
Round 2
Jan 2014
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Nov 2020
Round 3
Nov 2021
Mean  Whole Time Equivalent (WTE) 

 6 
Table 2: Whole time equivalent (WTE) general 
paediatric consultants, community or hospital 
based, employed within Health Boards and Trusts. 
Country/network 
Total WTE 
Mean WTE 
England and Wales 
(N=115) 
1964.6 
17.1 
England  (N=109) 
1825.7 
16.7 
Wales (N=6) 
138.9 
23.1 
 
 
 
BRPNF  (N=12) 
181.7 
15.1 
CEWT  (N=4) 
105.7 
26.4 
EPEN  (N=8) 
123.8 
15.5 
EPIC  (N=7) 
97.6 
13.9 
NTPEN  (N=15) 
250.3 
16.7 
NWEIG  (N=9) 
160.4 
17.8 
ORENG  (N=7) 
114.1 
16.3 
PENNEC  (N=7) 
143 
20.4 
SETPEG  (N=6) 
131.9 
22 
SWEP  (N=5) 
107.9 
21.6 
SWIPE  (N=8) 
125.6 
15.7 
SWTPEG  (N=7) 
134.3 
19.2 
TEN  (N=5) 
71.6 
14.3 
WPNN  (N=6) 
66.1 
11 
YPEN  (N=9) 
150.6 
16.7 
 
Table 3: Whole time equivalent (WTE) general paediatric consultants with 'expertise in epilepsy’, 
excluding paediatric neurologists, employed within Health Boards and Trusts. 
Country/network 
Total WTE 
Mean 
WTE 
Min WTE 
Max WTE 
% of general 
paediatric workforce 
with 'expertise in 
epilepsy' 
England and Wales 
(N=115) 
279.5 
2.4 
0 
11 
14% (279.5/1964.6) 
England  (N=109) 
262.5 
2.4 
0 
11 
14% (262.5/1825.7) 
Wales (N=6) 
17 
2.8 
1 
7 
12% (17/138.9) 
 
 
 
 
 
 
BRPNF  (N=12) 
28.6 
2.4 
0.7 
8 
16% (28.6/181.7) 
CEWT  (N=4) 
13.2 
3.3 
1 
6 
12% (13.2/105.7) 
EPEN  (N=8) 
17.2 
2.1 
0.6 
4 
14% (17.2/123.8) 
EPIC  (N=7) 
20.4 
2.9 
1 
7 
21% (20.4/97.6) 
NTPEN  (N=15) 
24.2 
1.6 
0 
3 
10% (24.2/250.3) 
NWEIG  (N=9) 
25.5 
2.8 
1 
11 
16% (25.5/160.4) 
ORENG  (N=7) 
22 
3.1 
1 
7 
19% (22/114.1) 
PENNEC  (N=7) 
27.2 
3.9 
2 
9 
19% (27.2/143) 
SETPEG  (N=6) 
13.8 
2.3 
1.8 
3 
10% (13.8/131.9) 
SWEP  (N=5) 
10 
2 
1 
3 
9% (10/107.9) 
SWIPE  (N=8) 
17 
2.1 
0.8 
4 
14% (17/125.6) 
SWTPEG  (N=7) 
12.4 
1.8 
1 
3 
9% (12.4/134.3) 
TEN  (N=5) 
10 
2 
1 
3 
14% (10/71.6) 
WPNN  (N=6) 
14.2 
2.4 
1 
3.8 
21% (14.2/66.1) 
YPEN  (N=9) 
23.8 
2.6 
1 
10.5 
16% (23.8/150.6) 
 

 7 
Table 4: Health Boards and Trusts that employed at least some level of 
whole time equivalent (WTE) consultant paediatrician with 'expertise in 
epilepsy’. 
Country/network 
% with some 
WTE 
% with no 
WTE 
WTE range in 
T/HBs with 
some WTE 
England and 
Wales (N=115) 
99% (114/115) 
1% (1/115) 
0.6 - 11.0 
England  (N=109) 
99% (108/109) 
1% (1/109) 
0.6 - 11.0 
Wales (N=6) 
100% (6/6) 
0% (0/6) 
1.0 - 7.0 
 
 
 
 
BRPNF  (N=12) 
100% (12/12) 
0% (0/12) 
0.7 - 8.0 
CEWT  (N=4) 
100% (4/4) 
0% (0/4) 
1.0 - 6.0 
EPEN  (N=8) 
100% (8/8) 
0% (0/8) 
0.6 - 4.0 
EPIC  (N=7) 
100% (7/7) 
0% (0/7) 
1.0 - 7.0 
NTPEN  (N=15) 
93% (14/15) 
7% (1/15) 
1.0 - 3.0 
NWEIG  (N=9) 
100% (9/9) 
0% (0/9) 
1.0 - 11.0 
ORENG  (N=7) 
100% (7/7) 
0% (0/7) 
1.0 - 7.0 
PENNEC  (N=7) 
100% (7/7) 
0% (0/7) 
2.0 - 9.0 
SETPEG  (N=6) 
100% (6/6) 
0% (0/6) 
1.8 - 3.0 
SWEP  (N=5) 
100% (5/5) 
0% (0/5) 
1.0 - 3.0 
SWIPE  (N=8) 
100% (8/8) 
0% (0/8) 
0.8 - 4.0 
SWTPEG  (N=7) 
100% (7/7) 
0% (0/7) 
1.0 - 3.0 
TEN  (N=5) 
100% (5/5) 
0% (0/5) 
1.0 - 3.0 
WPNN  (N=6) 
100% (6/6) 
0% (0/6) 
1.0 - 3.8 
YPEN  (N=9) 
100% (9/9) 
0% (0/9) 
1.0 - 10.5 
 
 
Table 5: Health Boards and Trusts that had a defined 
paediatric epilepsy clinical lead. 
Country/network 
% with a defined 
lead 
% with no 
defined lead 
England and 
Wales (N=115) 
91% (105/115) 
10% (11/115) 
England  (N=109) 
92% (100/109) 
9% (10/109) 
Wales (N=6) 
83% (5/6) 
17% (1/6) 
 
 
 
BRPNF  (N=12) 
92% (11/12) 
17% (2/12) 
CEWT  (N=4) 
100% (4/4) 
0% (0/4) 
EPEN  (N=8) 
100% (8/8) 
0% (0/8) 
EPIC  (N=7) 
100% (7/7) 
0% (0/7) 
NTPEN  (N=15) 
93% (14/15) 
7% (1/15) 
NWEIG  (N=9) 
100% (9/9) 
0% (0/9) 
ORENG  (N=7) 
100% (7/7) 
0% (0/7) 
PENNEC  (N=7) 
71% (5/7) 
29% (2/7) 
SETPEG  (N=6) 
67% (4/6) 
33% (2/6) 
SWEP  (N=5) 
80% (4/5) 
20% (1/5) 
SWIPE  (N=8) 
100% (8/8) 
0% (0/8) 
SWTPEG  (N=7) 
100% (7/7) 
0% (0/7) 
TEN  (N=5) 
100% (5/5) 
0% (0/5) 
WPNN  (N=6) 
83% (5/6) 
17% (1/6) 
YPEN  (N=9) 
78% (7/9) 
22% (2/9) 

 
8 
Epilepsy specialist nurse 
 
There was a total of 159.0 WTE epilepsy specialist nurses (ESN) reported to be employed 
across England and Wales. 89% (102/115) of Health Boards and Trusts had some epilepsy 
specialist nurses (ESN) provision (i.e. greater than 0 WTE). Of those with an ESN, the 
number employed ranged from 0.0 WTE to 4.8 WTE, (Table 7).  
 
Figure 2 shows a comparison of the mean WTE for epilepsy specialist nurses (ESN) 
employed in England and Wales in Round 1, Round 2, Round 3 April 2018, November 2019, 
November 2020 and November 2021. 
 
 
Figure 2: Mean Whole Time Equivalent epilepsy specialist nurses employed in England and Wales 
in Round 1, Round 2, Round 3 April 2018, November 2019, November 2020 and Round 3 November 
2021. 
0.5
0.6
1.0
1.2
1.3
1.4
0.0
0.5
1.0
1.5
Round 1
Nov 2009
Round 2
Jan 2014
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Nov 2020
Round 3
Nov 2021
Mean  Whole Time Equivalent (WTE) 

 
9 
Functions supported by Epilepsy Specialist Nurses (all Health Boards or Trusts) 
Figure 3 shows the percentage of Health Boards and Trusts supporting key ESN functions. 
More than 80% of Health boards/trusts indicated that they could offer ESN support for; rescue 
medication training for parents (100/115), school meetings (98/115), individual healthcare plan 
facilitation (98/115) and ward visits (95/115). 17% (20/115) of Health Boards and Trusts reported 
they could support all nine functions, Table 8. 
 
 Figure 3: Percentage of Health Boards and Trusts that could support epilepsy specialist nurse functions 
in Round 3 April 2018, November 2019, November 2020 and Round 3 November 2021. 
14%
32%
42%
51%
63%
65%
70%
71%
72%
75%
17%
34%
46%
56%
68%
68%
77%
77%
78%
80%
18%
37%
50%
68%
71%
76%
83%
85%
86%
87%
17%
39%
48%
71%
70%
77%
83%
85%
85%
87%
0%
20%
40%
60%
80%
100%
All 9 functions
Nurse prescribing
Emergency department visits
Nurse led clinics
Home visits
Rescue medication training - schools
Ward visits
Individual healthcare plan facilitation
School meetings
Rescue medication training - parents
Round 3
Nov 2021
Round 3
Nov 2020
Round 3
Nov 2019
Round 3
Apr 2018

 
10 
 
Table 6: Whole time equivalent (WTE) epilepsy specialist nurses 
employed within Health Boards and Trusts. 
Country/network 
Total 
WTE 
Mean 
WTE 
Min WTE 
Max WTE 
England and Wales 
(N=115) 
159 
1.4 
0 
4.8 
England  (N=109) 
147.8 
1.4 
0 
4.8 
Wales (N=6) 
11.2 
1.9 
0 
3 
 
 
 
 
 
BRPNF  (N=12) 
7.5 
0.6 
0 
1 
CEWT  (N=4) 
5.4 
1.4 
0 
2.6 
EPEN  (N=8) 
12.4 
1.6 
0 
3 
EPIC  (N=7) 
13.3 
1.9 
0.8 
3.5 
NTPEN  (N=15) 
20.7 
1.4 
0 
3.7 
NWEIG  (N=9) 
16.2 
1.8 
0 
4 
ORENG  (N=7) 
5.1 
0.7 
0 
1.5 
PENNEC  (N=7) 
10.1 
1.4 
0 
2.3 
SETPEG  (N=6) 
7.4 
1.2 
0 
2 
SWEP  (N=5) 
8.8 
1.8 
0 
3 
SWIPE  (N=8) 
13.5 
1.7 
0.3 
4.5 
SWTPEG  (N=7) 
8.4 
1.2 
0.8 
1.8 
TEN  (N=5) 
8 
1.6 
1 
2 
WPNN  (N=6) 
6.3 
1 
0 
2.5 
YPEN  (N=9) 
15.9 
1.8 
0.6 
4.8 
 
 
 
Table 7: Health Boards and Trusts that employed at least some level of 
whole time equivalent (WTE) epilepsy specialist nurse. 
Country/network 
% with some 
WTE 
% with no 
WTE 
WTE range in 
T/HBs with 
some WTE 
England and Wales 
(N=115) 
89% (102/115) 
11% (13/115) 
0.0 - 4.8 
England  (N=109) 
89% (97/109) 
11% (12/109) 
0.0 - 4.8 
Wales (N=6) 
83% (5/6) 
17% (1/6) 
1.0 - 3.0 
 
 
 
 
BRPNF  (N=12) 
67% (8/12) 
33% (4/12) 
0.8 - 1.0 
CEWT  (N=4) 
75% (3/4) 
25% (1/4) 
0.6 - 2.0 
EPEN  (N=8) 
88% (7/8) 
12% (1/8) 
0.6 - 2.6 
EPIC  (N=7) 
100% (7/7) 
0% (0/7) 
0.8 - 3.5 
NTPEN  (N=15) 
100% (15/15) 
0% (0/15) 
0.0 - 3.7 
NWEIG  (N=9) 
89% (8/9) 
11% (1/9) 
1.0 - 3.0 
ORENG  (N=7) 
71% (5/7) 
29% (2/7) 
0.6 - 1.5 
PENNEC  (N=7) 
86% (6/7) 
14% (1/7) 
0.5 - 2.3 
SETPEG  (N=6) 
83% (5/6) 
17% (1/6) 
0.3 - 2.0 
SWEP  (N=5) 
80% (4/5) 
20% (1/5) 
1.0 - 3.0 
SWIPE  (N=8) 
100% (8/8) 
0% (0/8) 
0.3 - 4.5 
SWTPEG  (N=7) 
100% (7/7) 
0% (0/7) 
0.8 - 1.8 
TEN  (N=5) 
100% (5/5) 
0% (0/5) 
1.0 - 2.0 
WPNN  (N=6) 
83% (5/6) 
17% (1/6) 
0.2 - 2.5 
YPEN  (N=9) 
100% (9/9) 
0% (0/9) 
0.6 - 4.8 

 
11 
  
Table 8: Health Boards and Trusts that could support epilepsy nurse functions 
 
Country/network 
Home visits 
Nurse led clinics 
Emergency    
department visits 
Ward visits 
Nurse prescribing 
School meetings 
England and Wales 
(N=115) 
70% (80/115) 
71% (82/115) 
48% (55/115) 
83% (95/115) 
39% (45/115) 
85% (98/115) 
England  (N=109) 
71% (77/109) 
72% (79/109) 
50% (55/109) 
83% (91/109) 
40% (44/109) 
86% (94/109) 
Wales (N=6) 
50% (3/6) 
50% (3/6) 
0% (0/6) 
67% (4/6) 
17% (1/6) 
67% (4/6) 
 
 
 
 
 
 
 
BRPNF  (N=12) 
42% (5/12) 
42% (5/12) 
33% (4/12) 
67% (8/12) 
33% (4/12) 
67% (8/12) 
CEWT  (N=4) 
50% (2/4) 
75% (3/4) 
50% (2/4) 
75% (3/4) 
25% (1/4) 
50% (2/4) 
EPEN  (N=8) 
62% (5/8) 
88% (7/8) 
75% (6/8) 
88% (7/8) 
25% (2/8) 
75% (6/8) 
EPIC  (N=7) 
86% (6/7) 
57% (4/7) 
57% (4/7) 
100% (7/7) 
71% (5/7) 
100% (7/7) 
NTPEN  (N=15) 
67% (10/15) 
73% (11/15) 
73% (11/15) 
100% (15/15) 
13% (2/15) 
93% (14/15) 
NWEIG  (N=9) 
89% (8/9) 
78% (7/9) 
11% (1/9) 
89% (8/9) 
67% (6/9) 
89% (8/9) 
ORENG  (N=7) 
71% (5/7) 
71% (5/7) 
57% (4/7) 
71% (5/7) 
29% (2/7) 
71% (5/7) 
PENNEC  (N=7) 
86% (6/7) 
71% (5/7) 
57% (4/7) 
71% (5/7) 
71% (5/7) 
86% (6/7) 
SETPEG  (N=6) 
67% (4/6) 
83% (5/6) 
50% (3/6) 
50% (3/6) 
17% (1/6) 
83% (5/6) 
SWEP  (N=5) 
40% (2/5) 
40% (2/5) 
0% (0/5) 
60% (3/5) 
0% (0/5) 
60% (3/5) 
SWIPE  (N=8) 
75% (6/8) 
75% (6/8) 
75% (6/8) 
100% (8/8) 
75% (6/8) 
100% (8/8) 
SWTPEG  (N=7) 
71% (5/7) 
86% (6/7) 
57% (4/7) 
100% (7/7) 
29% (2/7) 
100% (7/7) 
TEN  (N=5) 
100% (5/5) 
80% (4/5) 
40% (2/5) 
80% (4/5) 
20% (1/5) 
100% (5/5) 
WPNN  (N=6) 
67% (4/6) 
67% (4/6) 
33% (2/6) 
83% (5/6) 
50% (3/6) 
83% (5/6) 
YPEN  (N=9) 
78% (7/9) 
89% (8/9) 
22% (2/9) 
78% (7/9) 
56% (5/9) 
100% (9/9) 
 
 
 

 
12 
Table 8 (continued): Health Boards and Trusts that could support epilepsy nurse functions 
  
Country/network 
Individual HCP facilitation 
Rescue medication 
training parents 
Rescue medication 
training schools 
Supporting all 9 functions 
England and Wales (N=115) 
85% (98/115) 
87% (100/115) 
77% (89/115) 
17% (20/115) 
England  (N=109) 
85% (93/109) 
87% (95/109) 
77% (84/109) 
18% (20/109) 
Wales (N=6) 
83% (5/6) 
83% (5/6) 
83% (5/6) 
0% (0/6) 
 
 
 
 
 
BRPNF  (N=12) 
67% (8/12) 
67% (8/12) 
50% (6/12) 
17% (2/12) 
CEWT  (N=4) 
75% (3/4) 
75% (3/4) 
50% (2/4) 
25% (1/4) 
EPEN  (N=8) 
88% (7/8) 
88% (7/8) 
62% (5/8) 
12% (1/8) 
EPIC  (N=7) 
100% (7/7) 
100% (7/7) 
100% (7/7) 
14% (1/7) 
NTPEN  (N=15) 
87% (13/15) 
93% (14/15) 
73% (11/15) 
0% (0/15) 
NWEIG  (N=9) 
89% (8/9) 
89% (8/9) 
89% (8/9) 
11% (1/9) 
ORENG  (N=7) 
71% (5/7) 
71% (5/7) 
57% (4/7) 
14% (1/7) 
PENNEC  (N=7) 
86% (6/7) 
86% (6/7) 
86% (6/7) 
57% (4/7) 
SETPEG  (N=6) 
83% (5/6) 
83% (5/6) 
83% (5/6) 
17% (1/6) 
SWEP  (N=5) 
80% (4/5) 
80% (4/5) 
80% (4/5) 
0% (0/5) 
SWIPE  (N=8) 
88% (7/8) 
100% (8/8) 
100% (8/8) 
38% (3/8) 
SWTPEG  (N=7) 
100% (7/7) 
100% (7/7) 
100% (7/7) 
29% (2/7) 
TEN  (N=5) 
100% (5/5) 
100% (5/5) 
100% (5/5) 
0% (0/5) 
WPNN  (N=6) 
83% (5/6) 
67% (4/6) 
33% (2/6) 
17% (1/6) 
YPEN  (N=9) 
89% (8/9) 
100% (9/9) 
100% (9/9) 
22% (2/9) 
 
 
 

 
13 
Table 9: Health Boards and Trusts that employed at least some level of whole time equivalent (WTE) epilepsy specialist nurse that could 
support epilepsy nurse functions  
 
 
 
 
Country/network 
Home visits 
Nurse led clinics 
 
Emergency 
department visits 
Ward visits 
Nurse prescribing 
School meetings 
England and Wales 
(N=102) 
78% (80/102) 
80% (82/102) 
54% (55/102) 
93% (95/102) 
44% (45/102) 
96% (98/102) 
England  (N=97) 
79% (77/97) 
81% (79/97) 
57% (55/97) 
94% (91/97) 
45% (44/97) 
97% (94/97) 
Wales (N=5) 
60% (3/5) 
60% (3/5) 
0% (0/5) 
80% (4/5) 
20% (1/5) 
80% (4/5) 
 
 
 
 
 
 
 
BRPNF  (N=8) 
62% (5/8) 
62% (5/8) 
50% (4/8) 
100% (8/8) 
50% (4/8) 
100% (8/8) 
CEWT  (N=3) 
67% (2/3) 
100% (3/3) 
67% (2/3) 
100% (3/3) 
33% (1/3) 
67% (2/3) 
EPEN  (N=7) 
71% (5/7) 
100% (7/7) 
86% (6/7) 
100% (7/7) 
29% (2/7) 
86% (6/7) 
EPIC  (N=7) 
86% (6/7) 
57% (4/7) 
57% (4/7) 
100% (7/7) 
71% (5/7) 
100% (7/7) 
NTPEN  (N=15) 
67% (10/15) 
73% (11/15) 
73% (11/15) 
100% (15/15) 
13% (2/15) 
93% (14/15) 
NWEIG  (N=8) 
100% (8/8) 
88% (7/8) 
12% (1/8) 
100% (8/8) 
75% (6/8) 
100% (8/8) 
ORENG  (N=5) 
100% (5/5) 
100% (5/5) 
80% (4/5) 
100% (5/5) 
40% (2/5) 
100% (5/5) 
PENNEC  (N=6) 
100% (6/6) 
83% (5/6) 
67% (4/6) 
83% (5/6) 
83% (5/6) 
100% (6/6) 
SETPEG  (N=5) 
80% (4/5) 
100% (5/5) 
60% (3/5) 
60% (3/5) 
20% (1/5) 
100% (5/5) 
SWEP  (N=4) 
50% (2/4) 
50% (2/4) 
0% (0/4) 
75% (3/4) 
0% (0/4) 
75% (3/4) 
SWIPE  (N=8) 
75% (6/8) 
75% (6/8) 
75% (6/8) 
100% (8/8) 
75% (6/8) 
100% (8/8) 
SWTPEG  (N=7) 
71% (5/7) 
86% (6/7) 
57% (4/7) 
100% (7/7) 
29% (2/7) 
100% (7/7) 
TEN  (N=5) 
100% (5/5) 
80% (4/5) 
40% (2/5) 
80% (4/5) 
20% (1/5) 
100% (5/5) 
WPNN  (N=5) 
80% (4/5) 
80% (4/5) 
40% (2/5) 
100% (5/5) 
60% (3/5) 
100% (5/5) 
YPEN  (N=9) 
78% (7/9) 
89% (8/9) 
22% (2/9) 
78% (7/9) 
56% (5/9) 
100% (9/9) 

 
14 
Table 9 (continued): Health Boards and Trusts that employed at least some level of whole time equivalent (WTE) epilepsy specialist nurse 
that could support epilepsy nurse functions  
 
Country/network 
Individual HCP facilitation 
Rescue medication 
training with parents 
Rescue medication 
training in schools 
Supporting all 9 functions 
England and Wales (N=102) 
96% (98/102) 
98% (100/102) 
87% (89/102) 
20% (20/102) 
England  (N=97) 
96% (93/97) 
98% (95/97) 
87% (84/97) 
21% (20/97) 
Wales (N=5) 
100% (5/5) 
100% (5/5) 
100% (5/5) 
0% (0/5) 
 
 
 
 
 
BRPNF  (N=8) 
100% (8/8) 
100% (8/8) 
75% (6/8) 
25% (2/8) 
CEWT  (N=3) 
100% (3/3) 
100% (3/3) 
67% (2/3) 
33% (1/3) 
EPEN  (N=7) 
100% (7/7) 
100% (7/7) 
71% (5/7) 
14% (1/7) 
EPIC  (N=7) 
100% (7/7) 
100% (7/7) 
100% (7/7) 
14% (1/7) 
NTPEN  (N=15) 
87% (13/15) 
93% (14/15) 
73% (11/15) 
0% (0/15) 
NWEIG  (N=8) 
100% (8/8) 
100% (8/8) 
100% (8/8) 
12% (1/8) 
ORENG  (N=5) 
100% (5/5) 
100% (5/5) 
80% (4/5) 
20% (1/5) 
PENNEC  (N=6) 
100% (6/6) 
100% (6/6) 
100% (6/6) 
67% (4/6) 
SETPEG  (N=5) 
100% (5/5) 
100% (5/5) 
100% (5/5) 
20% (1/5) 
SWEP  (N=4) 
100% (4/4) 
100% (4/4) 
100% (4/4) 
0% (0/4) 
SWIPE  (N=8) 
88% (7/8) 
100% (8/8) 
100% (8/8) 
38% (3/8) 
SWTPEG  (N=7) 
100% (7/7) 
100% (7/7) 
100% (7/7) 
29% (2/7) 
TEN  (N=5) 
100% (5/5) 
100% (5/5) 
100% (5/5) 
0% (0/5) 
WPNN  (N=5) 
100% (5/5) 
80% (4/5) 
40% (2/5) 
20% (1/5) 
YPEN  (N=9) 
89% (8/9) 
100% (9/9) 
100% (9/9) 
22% (2/9) 
 
 

 
15 
Clinic configuration 
 
Defined epilepsy clinic  
 
There was a defined epilepsy clinic, seeing patients at secondary level, in 93% (107/115) of 
Health Boards and Trusts, (Table 10).  Of those, 89% (95/107) were holding defined epilepsy 
clinics that allowed at least 20 minutes with a consultant with expertise in epilepsy and an ESN, 
either simultaneously or in succession, (Table 12).  
 
Figure 4 shows a comparison of the mean of consultant or associate specialist led secondary 
level epilepsy clinics in November 2009, January 2014, April 2018, November 2019, November 
2020 and November 2021. 
 
 
Figure 4: Mean of consultant or associate specialist led secondary level epilepsy clinics in 
Round 1, Round 2, Round 3 April 2018, November 2019, November 2020 and Round 3 November 
2021.
1.0
1.1
1.9
2.1
2.1
2.2
0.0
0.5
1.0
1.5
2.0
2.5
Round 1
Nov 2009
Round 2
Jan 2014
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Nov 2020
Round 3
Nov 2021
Mean of clincis

 
16 
Table 10: Health Boards and Trusts that had a defined epilepsy clinic. 
Country/network 
% with a defined 
epilepsy clinic 
% with no defined epilepsy 
clinic 
England and Wales (N=115) 
93% (107/115) 
7% (8/115) 
England  (N=109) 
94% (102/109) 
6% (7/109) 
Wales (N=6) 
83% (5/6) 
17% (1/6) 
 
 
 
BRPNF  (N=12) 
83% (10/12) 
17% (2/12) 
CEWT  (N=4) 
100% (4/4) 
0% (0/4) 
EPEN  (N=8) 
88% (7/8) 
12% (1/8) 
EPIC  (N=7) 
100% (7/7) 
0% (0/7) 
NTPEN  (N=15) 
93% (14/15) 
7% (1/15) 
NWEIG  (N=9) 
100% (9/9) 
0% (0/9) 
ORENG  (N=7) 
100% (7/7) 
0% (0/7) 
PENNEC  (N=7) 
100% (7/7) 
0% (0/7) 
SETPEG  (N=6) 
100% (6/6) 
0% (0/6) 
SWEP  (N=5) 
80% (4/5) 
20% (1/5) 
SWIPE  (N=8) 
88% (7/8) 
12% (1/8) 
SWTPEG  (N=7) 
100% (7/7) 
0% (0/7) 
TEN  (N=5) 
100% (5/5) 
0% (0/5) 
WPNN  (N=6) 
83% (5/6) 
17% (1/6) 
YPEN  (N=9) 
89% (8/9) 
11% (1/9) 
 
 
 

 
17 
Table 11: Number of consultant or associate specialist led secondary level 'epilepsy clinics' 
taking place within Health Boards and Trusts per week. 
Country/network 
Total no. clinics per 
week 
Mean no. clinics 
per week 
Min no. clinics per 
week 
Max no. clinics 
per week 
England and 
Wales (N=107) 
236.6 
2.2 
0.1 
6 
England  (N=102) 
224.1 
2.2 
0.1 
6 
Wales (N=5) 
12.5 
2.5 
1.5 
4 
 
 
 
 
 
BRPNF  (N=10) 
19 
1.9 
1 
4 
CEWT  (N=4) 
8.8 
2.2 
1 
4.8 
EPEN  (N=7) 
17.3 
2.5 
0.8 
4 
EPIC  (N=7) 
14.8 
2.1 
1 
3 
NTPEN  (N=14) 
28.7 
2 
1 
5 
NWEIG  (N=9) 
22.4 
2.5 
1 
4.5 
ORENG  (N=7) 
10.8 
1.6 
0.1 
4.5 
PENNEC  (N=7) 
15.2 
2.2 
0.5 
4 
SETPEG  (N=6) 
19.2 
3.2 
2 
6 
SWEP  (N=4) 
9.5 
2.4 
1.5 
4 
SWIPE  (N=7) 
12.2 
1.7 
1 
3.2 
SWTPEG  (N=7) 
19.2 
2.7 
2 
4.7 
TEN  (N=5) 
7.2 
1.4 
0.5 
2 
WPNN  (N=6) 
15.5 
3.1 
1 
6 
YPEN  (N=6) 
16.7 
2.1 
0.5 
3.5 
 

 
18 
 
Table 12: Defined epilepsy clinics that allowed at least 20 minutes with a consultant 
with ‘expertise in epilepsy’ and/or an epilepsy specialist nurse. 
Country/network 
% with a defined epilepsy 
clinic 
% with no defined epilepsy clinic 
England and Wales (N=107) 
89% (95/107) 
11% (12/107) 
England  (N=102) 
88% (90/102) 
12% (12/102) 
Wales (N=5) 
100% (5/5) 
0% (0/5) 
 
 
 
BRPNF  (N=10) 
90% (9/10) 
10% (1/10) 
CEWT  (N=4) 
75% (3/4) 
25% (1/4) 
EPEN  (N=7) 
100% (7/7) 
0% (0/7) 
EPIC  (N=7) 
86% (6/7) 
14% (1/7) 
NTPEN  (N=14) 
79% (11/14) 
21% (3/14) 
NWEIG  (N=9) 
100% (9/9) 
0% (0/9) 
ORENG  (N=7) 
57% (4/7) 
43% (3/7) 
PENNEC  (N=7) 
71% (5/7) 
29% (2/7) 
SETPEG  (N=6) 
100% (6/6) 
0% (0/6) 
SWEP  (N=4) 
100% (4/4) 
0% (0/4) 
SWIPE  (N=7) 
100% (7/7) 
0% (0/7) 
SWTPEG  (N=7) 
100% (7/7) 
0% (0/7) 
TEN  (N=5) 
100% (5/5) 
0% (0/5) 
WPNN  (N=6) 
100% (5/5) 
0% (0/5) 
YPEN  (N=6) 
88% (7/8) 
12% (1/8) 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
19 
Epilepsy Best Practice Criteria (BPC) – England only 
 
Table 13 shows 47% (51/109) of Trusts in England were running epilepsy clinics to 2019 Best 
Practice Criteria standards.  
 
Figure 5: Percentage of Trusts receiving TFC 223 Epilepsy Best Practice Criteria (England only)  
 
 
 
49%
27%
18%
6%
46.6%
26.0%
20.6%
6.9%
41.6%
27.5%
23.2%
7.8%
47%
32%
17%
5%
0%
10%
20%
30%
40%
50%
Yes
In development
No
Not applicable
Round 3
Nov 2020
Round 3
Nov 2019
Round 3
Apr 2018
Round 3
Nov 2021

 
20 
Table 13: Trusts that were running TFC 223 Epilepsy Best Practice Criteria (BPC) clinics. 
Country/network 
Yes 
In development 
No 
N/A 
UK 
47% (51/109) 
32% (35/109) 
17% (18/109) 
5% (5/109) 
 
 
 
 
 
BRPNF 
33% (4/12) 
42% (5/12) 
25% (3/12) 
0% (0/12) 
CEWT 
75% (3/4) 
0% (0/4) 
25% (1/4) 
0% (0/4) 
EPEN 
50% (4/8) 
12% (1/8) 
12% (1/8) 
25% (2/8) 
EPIC 
17% (1/6) 
83% (5/6) 
0% (0/6) 
0% (0/6) 
NTPEN 
33% (5/15) 
47% (7/15) 
13% (2/15) 
7% (1/15) 
NWEIG 
22% (2/9) 
56% (5/9) 
22% (2/9) 
0% (0/9) 
ORENG 
29% (2/7) 
29% (2/7) 
43% (3/7) 
0% (0/7) 
PENNEC 
57% (4/7) 
14% (1/7) 
29% (2/7) 
0% (0/7) 
SETPEG 
33% (2/6) 
33% (2/6) 
33% (2/6) 
0% (0/6) 
SWIPE 
62% (5/8) 
25% (2/8) 
12% (1/8) 
0% (0/8) 
SWTPEG 
100% (7/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
TEN 
80% (4/5) 
20% (1/5) 
0% (0/5) 
0% (0/5) 
WPNN 
50% (3/6) 
17% (1/6) 
17% (1/6) 
17% (1/6) 
YPEN 
56% (5/9) 
33% (3/9) 
0% (0/9) 
11% (1/9) 
 
 
Tertiary provision 
 
Paediatric neurology services 
 
A total of 99.5 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, (Table 14). 94% (108/115) of Health Boards and Trusts had agreed referral 
pathways to tertiary paediatric neurology services, Table 16. 

 
21 
Table 14: Whole time equivalent (WTE) paediatric 
neurologists, acutely and/or non-acutely, employed 
within Health Boards or Trusts. 
Country/network 
Total WTE 
Min WTE 
Max WTE 
England and Wales 
(N=115) 
99.5 
0 
10.6 
England  (N=109) 
96.1 
0 
10.6 
Wales (N=6) 
3.4 
0 
2.8 
 
 
 
 
BRPNF  (N=12) 
6 
0 
6 
CEWT  (N=4) 
3 
0 
3 
EPEN  (N=8) 
4.4 
0 
4.4 
EPIC  (N=7) 
3.8 
0 
3.8 
NTPEN  (N=15) 
18.4 
0 
10.6 
NWEIG  (N=9) 
9.2 
0 
7.2 
ORENG  (N=7) 
6 
0 
6 
PENNEC  (N=7) 
4.7 
0 
4.7 
SETPEG  (N=6) 
4 
0 
4 
SWEP  (N=5) 
3.4 
0 
2.8 
SWIPE  (N=8) 
8 
0 
8 
SWTPEG  (N=7) 
4 
0 
4 
TEN  (N=5) 
5 
0 
5 
WPNN  (N=6) 
6.5 
0 
6.5 
YPEN  (N=9) 
13.1 
0 
10.5 
 
Table 15: Health Boards and Trusts that employed at least some 
level of whole time equivalent (WTE) paediatric neurologists, 
acutely and/or non-acutely. 
Country/network 
% with some 
WTE 
% with no WTE 
WTE range in 
T/HBs with 
some WTE 
England and Wales 
(N=115) 
20% (23/115) 
80% (92/115) 
0.0 - 10.6 
England  (N=109) 
19% (21/109) 
81% (88/109) 
0.0 - 10.6 
Wales (N=6) 
33% (2/6) 
67% (4/6) 
0.6 - 2.8 
 
 
 
 
BRPNF  (N=12) 
17% (2/12) 
83% (10/12) 
0.0 - 6.0 
CEWT  (N=4) 
25% (1/4) 
75% (3/4) 
3.0 - 3.0 
EPEN  (N=8) 
12% (1/8) 
88% (7/8) 
4.4 - 4.4 
EPIC  (N=7) 
14% (1/7) 
86% (6/7) 
3.8 - 3.8 
NTPEN  (N=15) 
27% (4/15) 
73% (11/15) 
1.8 - 10.6 
NWEIG  (N=9) 
22% (2/9) 
78% (7/9) 
2.0 - 7.2 
ORENG  (N=7) 
14% (1/7) 
86% (6/7) 
6.0 - 6.0 
PENNEC  (N=7) 
14% (1/7) 
86% (6/7) 
4.7 - 4.7 
SETPEG  (N=6) 
17% (1/6) 
83% (5/6) 
4.0 - 4.0 
SWEP  (N=5) 
40% (2/5) 
60% (3/5) 
0.6 - 2.8 
SWIPE  (N=8) 
12% (1/8) 
88% (7/8) 
8.0 - 8.0 
SWTPEG  (N=7) 
14% (1/7) 
86% (6/7) 
4.0 - 4.0 
TEN  (N=5) 
20% (1/5) 
80% (4/5) 
5.0 - 5.0 
WPNN  (N=6) 
17% (1/6) 
83% (5/6) 
6.5 - 6.5 
YPEN  (N=9) 
33% (3/9) 
67% (6/9) 
0.0 - 10.5 
 
 

 
22 
Table 16: Health Boards and Trusts with agreed 
referral pathways to tertiary paediatric neurology 
services. 
Country/network 
Yes 
No 
England and Wales 
(N=115) 
94% (108/115) 
6% (7/115) 
England  (N=109) 
95% (104/109) 
5% (5/109) 
Wales (N=6) 
67% (4/6) 
33% (2/6) 
 
 
 
BRPNF  (N=12) 
83% (10/12) 
17% (2/12) 
CEWT  (N=4) 
100% (4/4) 
0% (0/4) 
EPEN  (N=8) 
100% (8/8) 
0% (0/8) 
EPIC  (N=7) 
100% (7/7) 
0% (0/7) 
NTPEN  (N=15) 
100% (15/15) 
0% (0/15) 
NWEIG  (N=9) 
89% (8/9) 
11% (1/9) 
ORENG  (N=7) 
100% (7/7) 
0% (0/7) 
PENNEC  (N=7) 
86% (6/7) 
14% (1/7) 
SETPEG  (N=6) 
100% (6/6) 
0% (0/6) 
SWEP  (N=5) 
60% (3/5) 
40% (2/5) 
SWIPE  (N=8) 
100% (8/8) 
0% (0/8) 
SWTPEG  (N=7) 
100% (7/7) 
0% (0/7) 
TEN  (N=5) 
100% (5/5) 
0% (0/5) 
WPNN  (N=6) 
100% (6/6) 
0% (0/6) 
YPEN  (N=9) 
89% (8/9) 
11% (1/9) 
 
 
Table 17a: Health Boards and Trusts that could receive paediatric 
neurological direct referrals from general practice and emergency 
departments. 
Country/network 
Yes 
No 
N/A 
England and Wales 
(N=115) 
17% (19/115) 
54% (62/115) 
30% (34/115) 
England  (N=109) 
17% (18/109) 
53% (58/109) 
30% (33/109) 
Wales (N=6) 
17% (1/6) 
67% (4/6) 
17% (1/6) 
 
 
 
 
BRPNF  (N=12) 
8% (1/12) 
25% (3/12) 
67% (8/12) 
CEWT  (N=4) 
13% (2/15) 
67% (10/15) 
20% (3/15) 
EPEN  (N=8) 
33% (3/9) 
67% (6/9) 
0% (0/9) 
EPIC  (N=7) 
29% (2/7) 
43% (3/7) 
29% (2/7) 
NTPEN  (N=15) 
29% (2/7) 
57% (4/7) 
14% (1/7) 
NWEIG  (N=9) 
33% (2/6) 
50% (3/6) 
17% (1/6) 
ORENG  (N=7) 
20% (1/5) 
60% (3/5) 
20% (1/5) 
PENNEC  (N=7) 
12% (1/8) 
25% (2/8) 
62% (5/8) 
SETPEG  (N=6) 
14% (1/7) 
71% (5/7) 
14% (1/7) 
SWEP  (N=5) 
40% (2/5) 
40% (2/5) 
20% (1/5) 
SWIPE  (N=8) 
17% (1/6) 
33% (2/6) 
50% (3/6) 
SWTPEG  (N=7) 
11% (1/9) 
67% (6/9) 
22% (2/9) 
TEN  (N=5) 
0% (0/4) 
25% (1/4) 
75% (3/4) 
WPNN  (N=6) 
0% (0/8) 
100% (8/8) 
0% (0/8) 
YPEN  (N=9) 
0% (0/7) 
57% (4/7) 
43% (3/7) 

 
23 
Table 17b: Health Boards and Trusts that could 
receive paediatric neurological direct referrals from 
general practice and emergency departments 
(excluding N/A). 
Country/network 
Yes 
No 
England and Wales 
(N=81) 
23% (19/81) 
77% (62/81) 
England  (N=76) 
24% (18/76) 
76% (58/76) 
Wales (N=5) 
20% (1/5) 
80% (4/5) 
 
 
 
BRPNF  (N=4) 
25% (1/4) 
75% (3/4) 
CEWT  (N=1) 
0% (0/1) 
100% (1/1) 
EPEN  (N=8) 
0% (0/8) 
100% (8/8) 
EPIC  (N=4) 
0% (0/4) 
100% (4/4) 
NTPEN  (N=12) 
17% (2/12) 
83% (10/12) 
NWEIG  (N=9) 
33% (3/9) 
67% (6/9) 
ORENG  (N=5) 
40% (2/5) 
60% (3/5) 
PENNEC  (N=6) 
33% (2/6) 
67% (4/6) 
SETPEG  (N=5) 
40% (2/5) 
60% (3/5) 
SWEP  (N=4) 
25% (1/4) 
75% (3/4) 
SWIPE  (N=3) 
33% (1/3) 
67% (2/3) 
SWTPEG  (N=6) 
17% (1/6) 
83% (5/6) 
TEN  (N=4) 
50% (2/4) 
50% (2/4) 
WPNN  (N=3) 
33% (1/3) 
67% (2/3) 
YPEN  (N=7) 
14% (1/7) 
86% (6/7) 
 
Table 18: Health Boards and Trusts that were hosting satellite 
paediatric neurology clinics. 
Country/network 
Yes 
No 
N/A 
England and Wales 
(N=115) 
66% (76/115) 
30% (34/115) 
4% (5/115) 
England  (N=109) 
65% (71/109) 
30% (33/109) 
5% (5/109) 
Wales (N=6) 
83% (5/6) 
17% (1/6) 
0% (0/6) 
 
 
 
 
BRPNF  (N=12) 
33% (4/12) 
42% (5/12) 
25% (3/12) 
CEWT  (N=4) 
50% (2/4) 
25% (1/4) 
25% (1/4) 
EPEN  (N=8) 
75% (6/8) 
25% (2/8) 
0% (0/8) 
EPIC  (N=7) 
86% (6/7) 
14% (1/7) 
0% (0/7) 
NTPEN  (N=15) 
20% (3/15) 
80% (12/15) 
0% (0/15) 
NWEIG  (N=9) 
89% (8/9) 
0% (0/9) 
11% (1/9) 
ORENG  (N=7) 
86% (6/7) 
14% (1/7) 
0% (0/7) 
PENNEC  (N=7) 
86% (6/7) 
14% (1/7) 
0% (0/7) 
SETPEG  (N=6) 
100% (6/6) 
0% (0/6) 
0% (0/6) 
SWEP  (N=5) 
80% (4/5) 
20% (1/5) 
0% (0/5) 
SWIPE  (N=8) 
100% (8/8) 
0% (0/8) 
0% (0/8) 
SWTPEG  (N=7) 
100% (7/7) 
0% (0/7) 
0% (0/7) 
TEN  (N=5) 
60% (3/5) 
40% (2/5) 
0% (0/5) 
WPNN  (N=6) 
100% (6/6) 
0% (0/6) 
0% (0/6) 
YPEN  (N=9) 
11% (1/9) 
89% (8/9) 
0% (0/9) 
 
 

 
24 
Other services 
17% (19/115) of Health Boards and Trusts reported they could facilitate commencement of the 
ketogenic diet and 18% (21/115) reported they could facilitate ongoing review of the diet, (Table 
19 and Table 20 respectively). 10% (12/115) reported they could provide Vagal Nerve Stimulator 
(VNS) insertion services and 23% (27/115) reported that they could facilitate VNS review services, 
(Table 21 and Table 22 respectively). 
Figure 6 shows, a comparison of Health Boards and Trusts that provided ketogenetic diet and 
vagal nerve stimulator (VNS) services within their locations in Round 3 April 2018, Round 3 
November 2019, November 2020 and November 2021 
  
Figure 6: Percentage of Health Boards and Trusts that could provide ketogenetic diet and vagal 
nerve stimulator services  
 
 
 
 
15%
21%
8%
23%
15%
19%
10%
21%
16%
18%
10%
22%
17%
18%
10%
23%
0%
5%
10%
15%
20%
25%
Commence diet
Ongoing review
Insertion
Review
Ketogenetic diet
Vagal nerve stimulator
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Apr 2020
Round 3
Nov 2021

 
25 
 
Table 19: Health Boards and Trusts that could facilitate the 
commencement of a ketogenic diet.  
Country/network 
Yes 
No 
Uncertain 
England and Wales 
(N=115) 
17% (19/115) 
83% (96/115) 
0% (0/115) 
England  (N=109) 
17% (19/109) 
83% (90/109) 
0% (0/109) 
Wales (N=6) 
0% (0/6) 
100% (6/6) 
0% (0/6) 
 
 
 
 
BRPNF  (N=12) 
8% (1/12) 
92% (11/12) 
0% (0/12) 
CEWT  (N=4) 
50% (2/4) 
50% (2/4) 
0% (0/4) 
EPEN  (N=8) 
12% (1/8) 
88% (7/8) 
0% (0/8) 
EPIC  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
NTPEN  (N=15) 
7% (1/15) 
93% (14/15) 
0% (0/15) 
NWEIG  (N=9) 
22% (2/9) 
78% (7/9) 
0% (0/9) 
ORENG  (N=7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
PENNEC  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
SETPEG  (N=6) 
0% (0/6) 
100% (6/6) 
0% (0/6) 
SWEP  (N=5) 
0% (0/5) 
100% (5/5) 
0% (0/5) 
SWIPE  (N=8) 
50% (4/8) 
50% (4/8) 
0% (0/8) 
SWTPEG  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
TEN  (N=5) 
0% (0/5) 
100% (5/5) 
0% (0/5) 
WPNN  (N=6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
YPEN  (N=9) 
22% (2/9) 
78% (7/9) 
0% (0/9) 
 
Table 20: Health Boards and Trusts that could undertake ongoing 
review of a ketogenic diet.  
Country/network 
Yes 
No 
Uncertain 
England and Wales 
(N=115) 
18% (21/115) 
82% (94/115) 
0% (0/115) 
England  (N=109) 
19% (21/109) 
81% (88/109) 
0% (0/109) 
Wales (N=6) 
0% (0/6) 
100% (6/6) 
0% (0/6) 
 
 
 
 
BRPNF  (N=12) 
8% (1/12) 
92% (11/12) 
0% (0/12) 
CEWT  (N=4) 
50% (2/4) 
50% (2/4) 
0% (0/4) 
EPEN  (N=8) 
12% (1/8) 
88% (7/8) 
0% (0/8) 
EPIC  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
NTPEN  (N=15) 
7% (1/15) 
93% (14/15) 
0% (0/15) 
NWEIG  (N=9) 
22% (2/9) 
78% (7/9) 
0% (0/9) 
ORENG  (N=7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
PENNEC  (N=7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
SETPEG  (N=6) 
0% (0/6) 
100% (6/6) 
0% (0/6) 
SWEP  (N=5) 
0% (0/5) 
100% (5/5) 
0% (0/5) 
SWIPE  (N=8) 
62% (5/8) 
38% (3/8) 
0% (0/8) 
SWTPEG  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
TEN  (N=5) 
0% (0/5) 
100% (5/5) 
0% (0/5) 
WPNN  (N=6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
YPEN  (N=9) 
22% (2/9) 
78% (7/9) 
0% (0/9) 
 

 
26 
Table 21: Health Boards and Trusts that were able to insert vagal 
nerve stimulator.  
Country/network 
Yes 
No 
Uncertain  
England and Wales 
(N=115) 
10% (12/115) 
90% (103/115) 
0% (0/115) 
England  (N=109) 
11% (12/109) 
89% (97/109) 
0% (0/109) 
Wales (N=6) 
0% (0/6) 
100% (6/6) 
0% (0/6) 
 
 
 
 
BRPNF  (N=12) 
8% (1/12) 
92% (11/12) 
0% (0/12) 
CEWT  (N=4) 
25% (1/4) 
75% (3/4) 
0% (0/4) 
EPEN  (N=8) 
12% (1/8) 
88% (7/8) 
0% (0/8) 
EPIC  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
NTPEN  (N=15) 
7% (1/15) 
93% (14/15) 
0% (0/15) 
NWEIG  (N=9) 
11% (1/9) 
89% (8/9) 
0% (0/9) 
ORENG  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
PENNEC  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
SETPEG  (N=6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
SWEP  (N=5) 
0% (0/5) 
100% (5/5) 
0% (0/5) 
SWIPE  (N=8) 
12% (1/8) 
88% (7/8) 
0% (0/8) 
SWTPEG  (N=7) 
0% (0/7) 
100% (7/7) 
0% (0/7) 
TEN  (N=5) 
0% (0/5) 
100% (5/5) 
0% (0/5) 
WPNN  (N=6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
YPEN  (N=9) 
11% (1/9) 
89% (8/9) 
0% (0/9) 
 
Table 22: Health Boards and Trusts that were able to review vagal 
nerve stimulator 
Country/network 
Yes 
No 
Uncertain 
England and Wales 
(N=115) 
23% (27/115) 
77% (88/115) 
0% (0/115) 
England  (N=109) 
21% (23/109) 
79% (86/109) 
0% (0/109) 
Wales (N=6) 
67% (4/6) 
33% (2/6) 
0% (0/6) 
 
 
 
 
BRPNF  (N=12) 
17% (2/12) 
83% (10/12) 
0% (0/12) 
CEWT  (N=4) 
25% (1/4) 
75% (3/4) 
0% (0/4) 
EPEN  (N=8) 
25% (2/8) 
75% (6/8) 
0% (0/8) 
EPIC  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
NTPEN  (N=15) 
7% (1/15) 
93% (14/15) 
0% (0/15) 
NWEIG  (N=9) 
33% (3/9) 
67% (6/9) 
0% (0/9) 
ORENG  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
PENNEC  (N=7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
SETPEG  (N=6) 
50% (3/6) 
50% (3/6) 
0% (0/6) 
SWEP  (N=5) 
80% (4/5) 
20% (1/5) 
0% (0/5) 
SWIPE  (N=8) 
50% (4/8) 
50% (4/8) 
0% (0/8) 
SWTPEG  (N=7) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
TEN  (N=5) 
22% (2/9) 
78% (7/9) 
0% (0/9) 
WPNN  (N=6) 
0% (0/7) 
100% (7/7) 
0% (0/7) 
YPEN  (N=9) 
0% (0/5) 
100% (5/5) 
0% (0/5) 

 
27 
Investigations 
 
Figure 7 shows a comparison of availability of epilepsy investigation services across England and 
Wales in Round 3 April 2018, November 2019, November 2020 and November 2021. 
 
Figure 7: Percentage of Health Boards and Trusts that could provide investigation services in 
Round 3 April 2018, November 2019, November 2020 and November 2021.
16%
13%
23%
39%
58%
61%
58%
58%
61%
58%
63%
94%
96%
16%
15%
21%
40%
58%
56%
57%
57%
60%
54%
65%
96%
96%
13%
14%
21%
38%
43%
56%
57%
59%
61%
54%
66%
95%
95%
18%
14%
25%
40%
55%
62%
62%
62%
64%
60%
40%
95%
95%
0%
20%
40%
60%
80%
100%
Home
Outpatient
Inpatient
Sedated
24-48h ambulatory
Portable on ward area
Melatonin induced
Sleep-deprived
Standard
With general anaesthetic
With sedation
Awake
12-lead ECG
Video telemetry
EEG
MRI
ECG
Percentage of Health Boards and Trusts
Round 3
Nov 2021
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Apr 2020

 
28 
Table 23: Health Boards and Trusts that could provide epilepsy investigation services. 
 
Country/ 
network 
12-lead ECG 
‘Awake’ MRI 
MRI with sedation 
Yes 
No 
Uncertain 
Yes 
No 
Uncertain 
Yes 
No 
Uncertain 
England and 
Wales (N=115) 
95% (109/115) 
5% (6/115) 
0% (0/115) 
95% (109/115) 
5% (6/115) 
0% (0/115) 
66% (76/115) 
34% (39/115) 
0% (0/115) 
England  
(N=109) 
94% (103/109) 
6% (6/109) 
0% (0/109) 
94% (103/109) 
6% (6/109) 
0% (0/109) 
65% (71/109) 
35% (38/109) 
0% (0/109) 
Wales (N=6) 
100% (6/6) 
0% (0/6) 
0% (0/6) 
100% (6/6) 
0% (0/6) 
0% (0/6) 
83% (5/6) 
17% (1/6) 
0% (0/6) 
 
 
 
 
 
 
 
 
 
 
BRPNF  (N=12) 
92% (11/12) 
8% (1/12) 
0% (0/12) 
83% (10/12) 
17% (2/12) 
0% (0/12) 
67% (8/12) 
33% (4/12) 
0% (0/12) 
CEWT  (N=4) 
100% (4/4) 
0% (0/4) 
0% (0/4) 
100% (4/4) 
0% (0/4) 
0% (0/4) 
100% (4/4) 
0% (0/4) 
0% (0/4) 
EPEN  (N=8) 
88% (7/8) 
12% (1/8) 
0% (0/8) 
88% (7/8) 
12% (1/8) 
0% (0/8) 
88% (7/8) 
12% (1/8) 
0% (0/8) 
EPIC  (N=7) 
100% (7/7) 
0% (0/7) 
0% (0/7) 
100% (7/7) 
0% (0/7) 
0% (0/7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
NTPEN  (N=15) 
100% (15/15) 
0% (0/15) 
0% (0/15) 
100% (15/15) 
0% (0/15) 
0% (0/15) 
87% (13/15) 
13% (2/15) 
0% (0/15) 
NWEIG  (N=9) 
100% (9/9) 
0% (0/9) 
0% (0/9) 
100% (9/9) 
0% (0/9) 
0% (0/9) 
56% (5/9) 
44% (4/9) 
0% (0/9) 
ORENG  (N=7) 
100% (7/7) 
0% (0/7) 
0% (0/7) 
100% (7/7) 
0% (0/7) 
0% (0/7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
PENNEC  
(N=7) 
100% (7/7) 
0% (0/7) 
0% (0/7) 
100% (7/7) 
0% (0/7) 
0% (0/7) 
71% (5/7) 
29% (2/7) 
0% (0/7) 
SETPEG  (N=6) 
83% (5/6) 
17% (1/6) 
0% (0/6) 
83% (5/6) 
17% (1/6) 
0% (0/6) 
83% (5/6) 
17% (1/6) 
0% (0/6) 
SWEP  (N=5) 
100% (5/5) 
0% (0/5) 
0% (0/5) 
100% (5/5) 
0% (0/5) 
0% (0/5) 
80% (4/5) 
20% (1/5) 
0% (0/5) 
SWIPE  (N=8) 
100% (8/8) 
0% (0/8) 
0% (0/8) 
100% (8/8) 
0% (0/8) 
0% (0/8) 
50% (4/8) 
50% (4/8) 
0% (0/8) 
SWTPEG  
(N=7) 
100% (7/7) 
0% (0/7) 
0% (0/7) 
100% (7/7) 
0% (0/7) 
0% (0/7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
TEN  (N=5) 
80% (4/5) 
20% (1/5) 
0% (0/5) 
100% (5/5) 
0% (0/5) 
0% (0/5) 
40% (2/5) 
60% (3/5) 
0% (0/5) 
WPNN  (N=6) 
83% (5/6) 
17% (1/6) 
0% (0/6) 
83% (5/6) 
17% (1/6) 
0% (0/6) 
50% (3/6) 
50% (3/6) 
0% (0/6) 
YPEN  (N=9) 
89% (8/9) 
11% (1/9) 
0% (0/9) 
89% (8/9) 
11% (1/9) 
0% (0/9) 
56% (5/9) 
44% (4/9) 
0% (0/9) 
 

 
29 
 
 
Table 23 (continued): Health Boards and Trusts that could provide epilepsy investigation services. 
 
Country/ 
network 
MRI with general anaesthetic 
Standard EEG 
Sleep deprived EEG 
Yes 
No 
Uncertain 
Yes 
No 
Uncertain 
Yes 
No 
Uncertain 
England and 
Wales (N=115) 
60% (69/115) 
40% (46/115) 
0% (0/115) 
64% (74/115) 
36% (41/115) 
0% (0/115) 
62% (71/115) 
38% (44/115) 
0% (0/115) 
England  (N=109) 
58% (63/109) 
42% (46/109) 
0% (0/109) 
62% (68/109) 
38% (41/109) 
0% (0/109) 
60% (65/109) 
40% (44/109) 
0% (0/109) 
Wales (N=6) 
100% (6/6) 
0% (0/6) 
0% (0/6) 
100% (6/6) 
0% (0/6) 
0% (0/6) 
100% (6/6) 
0% (0/6) 
0% (0/6) 
 
 
 
 
 
 
 
 
 
 
BRPNF  (N=12) 
58% (7/12) 
42% (5/12) 
0% (0/12) 
58% (7/12) 
42% (5/12) 
0% (0/12) 
58% (7/12) 
42% (5/12) 
0% (0/12) 
CEWT  (N=4) 
100% (4/4) 
0% (0/4) 
0% (0/4) 
75% (3/4) 
25% (1/4) 
0% (0/4) 
75% (3/4) 
25% (1/4) 
0% (0/4) 
EPEN  (N=8) 
62% (5/8) 
38% (3/8) 
0% (0/8) 
62% (5/8) 
38% (3/8) 
0% (0/8) 
62% (5/8) 
38% (3/8) 
0% (0/8) 
EPIC  (N=7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
NTPEN  (N=15) 
47% (7/15) 
53% (8/15) 
0% (0/15) 
67% (10/15) 
33% (5/15) 
0% (0/15) 
67% (10/15) 
33% (5/15) 
0% (0/15) 
NWEIG  (N=9) 
33% (3/9) 
67% (6/9) 
0% (0/9) 
67% (6/9) 
33% (3/9) 
0% (0/9) 
67% (6/9) 
33% (3/9) 
0% (0/9) 
ORENG  (N=7) 
71% (5/7) 
29% (2/7) 
0% (0/7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
PENNEC  (N=7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
SETPEG  (N=6) 
50% (3/6) 
50% (3/6) 
0% (0/6) 
33% (2/6) 
67% (4/6) 
0% (0/6) 
33% (2/6) 
67% (4/6) 
0% (0/6) 
SWEP  (N=5) 
100% (5/5) 
0% (0/5) 
0% (0/5) 
100% (5/5) 
0% (0/5) 
0% (0/5) 
100% (5/5) 
0% (0/5) 
0% (0/5) 
SWIPE  (N=8) 
88% (7/8) 
12% (1/8) 
0% (0/8) 
100% (8/8) 
0% (0/8) 
0% (0/8) 
75% (6/8) 
25% (2/8) 
0% (0/8) 
SWTPEG  (N=7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
86% (6/7) 
14% (1/7) 
0% (0/7) 
71% (5/7) 
29% (2/7) 
0% (0/7) 
TEN  (N=5) 
40% (2/5) 
60% (3/5) 
0% (0/5) 
20% (1/5) 
80% (4/5) 
0% (0/5) 
20% (1/5) 
80% (4/5) 
0% (0/5) 
WPNN  (N=6) 
67% (4/6) 
33% (2/6) 
0% (0/6) 
50% (3/6) 
50% (3/6) 
0% (0/6) 
50% (3/6) 
50% (3/6) 
0% (0/6) 
YPEN  (N=9) 
56% (5/9) 
44% (4/9) 
0% (0/9) 
78% (7/9) 
22% (2/9) 
0% (0/9) 
78% (7/9) 
22% (2/9) 
0% (0/9) 
 
 
 

 
30 
Table 23 (continued): Health Boards and Trusts that could provide epilepsy investigation services. 
 
Country/ 
network 
Melatonin EEG 
Sedated EEG 
24-48h ambulatory EEG 
Yes 
No 
Uncertain 
Yes 
No 
Uncertain 
Yes 
No 
Uncertain 
England and 
Wales (N=115) 
62% (71/115) 
37% (43/115) 
1% (1/115) 
40% (46/115) 
58% (67/115) 
2% (2/115) 
44% (51/115) 
55% (63/115) 
1% (1/115) 
England  
(N=109) 
61% (66/109) 
39% (43/109) 
0% (0/109) 
39% (42/109) 
61% (66/109) 
1% (1/109) 
42% (46/109) 
58% (63/109) 
0% (0/109) 
Wales (N=6) 
83% (5/6) 
0% (0/6) 
17% (1/6) 
67% (4/6) 
17% (1/6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
17% (1/6) 
 
 
 
 
 
 
 
 
 
 
BRPNF  (N=12) 
58% (7/12) 
42% (5/12) 
0% (0/12) 
33% (4/12) 
67% (8/12) 
0% (0/12) 
42% (5/12) 
58% (7/12) 
0% (0/12) 
CEWT  (N=4) 
75% (3/4) 
25% (1/4) 
0% (0/4) 
50% (2/4) 
50% (2/4) 
0% (0/4) 
75% (3/4) 
25% (1/4) 
0% (0/4) 
EPEN  (N=8) 
62% (5/8) 
38% (3/8) 
0% (0/8) 
25% (2/8) 
75% (6/8) 
0% (0/8) 
38% (3/8) 
62% (5/8) 
0% (0/8) 
EPIC  (N=7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
NTPEN  (N=15) 
60% (9/15) 
40% (6/15) 
0% (0/15) 
40% (6/15) 
60% (9/15) 
0% (0/15) 
20% (3/15) 
80% (12/15) 
0% (0/15) 
NWEIG  (N=9) 
67% (6/9) 
33% (3/9) 
0% (0/9) 
56% (5/9) 
44% (4/9) 
0% (0/9) 
33% (3/9) 
67% (6/9) 
0% (0/9) 
ORENG  (N=7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
PENNEC  (N=7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
SETPEG  (N=6) 
33% (2/6) 
67% (4/6) 
0% (0/6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
SWEP  (N=5) 
80% (4/5) 
0% (0/5) 
20% (1/5) 
80% (4/5) 
0% (0/5) 
20% (1/5) 
80% (4/5) 
0% (0/5) 
20% (1/5) 
SWIPE  (N=8) 
88% (7/8) 
12% (1/8) 
0% (0/8) 
75% (6/8) 
25% (2/8) 
0% (0/8) 
75% (6/8) 
25% (2/8) 
0% (0/8) 
SWTPEG  (N=7) 
86% (6/7) 
14% (1/7) 
0% (0/7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
TEN  (N=5) 
20% (1/5) 
80% (4/5) 
0% (0/5) 
20% (1/5) 
80% (4/5) 
0% (0/5) 
20% (1/5) 
80% (4/5) 
0% (0/5) 
WPNN  (N=6) 
50% (3/6) 
50% (3/6) 
0% (0/6) 
17% (1/6) 
67% (4/6) 
17% (1/6) 
50% (3/6) 
50% (3/6) 
0% (0/6) 
YPEN  (N=9) 
78% (7/9) 
22% (2/9) 
0% (0/9) 
44% (4/9) 
56% (5/9) 
0% (0/9) 
78% (7/9) 
22% (2/9) 
0% (0/9) 
 
 

 
31 
Table 23 (continued): Health Boards and Trusts that could provide epilepsy investigation services. 
 
Country/ 
network 
Inpatient Video Telemetry 
Outpatient Video Telemetry 
Home Video Telemetry 
Yes 
No 
Uncertain 
Yes 
No 
Uncertain 
Yes 
No 
Uncertain 
England and 
Wales (N=115) 
23% (26/115) 
77% (89/115) 
0% (0/115) 
14% (16/115) 
85% (98/115) 
1% (1/115) 
18% (21/115) 
81% (93/115) 
1% (1/115) 
England  
(N=109) 
23% (25/109) 
77% (84/109) 
0% (0/109) 
14% (15/109) 
85% (93/109) 
1% (1/109) 
18% (20/109) 
81% (88/109) 
1% (1/109) 
Wales (N=6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
 
 
 
 
 
 
 
 
 
 
BRPNF  (N=12) 
25% (3/12) 
75% (9/12) 
0% (0/12) 
8% (1/12) 
92% (11/12) 
0% (0/12) 
17% (2/12) 
83% (10/12) 
0% (0/12) 
CEWT  (N=4) 
50% (2/4) 
50% (2/4) 
0% (0/4) 
0% (0/4) 
100% (4/4) 
0% (0/4) 
25% (1/4) 
75% (3/4) 
0% (0/4) 
EPEN  (N=8) 
25% (2/8) 
75% (6/8) 
0% (0/8) 
0% (0/8) 
88% (7/8) 
12% (1/8) 
12% (1/8) 
75% (6/8) 
12% (1/8) 
EPIC  (N=7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
NTPEN  (N=15) 
13% (2/15) 
87% (13/15) 
0% (0/15) 
7% (1/15) 
93% (14/15) 
0% (0/15) 
13% (2/15) 
87% (13/15) 
0% (0/15) 
NWEIG  (N=9) 
11% (1/9) 
89% (8/9) 
0% (0/9) 
33% (3/9) 
67% (6/9) 
0% (0/9) 
33% (3/9) 
67% (6/9) 
0% (0/9) 
ORENG  (N=7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
PENNEC  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
SETPEG  (N=6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
33% (2/6) 
67% (4/6) 
0% (0/6) 
SWEP  (N=5) 
20% (1/5) 
80% (4/5) 
0% (0/5) 
20% (1/5) 
80% (4/5) 
0% (0/5) 
20% (1/5) 
80% (4/5) 
0% (0/5) 
SWIPE  (N=8) 
38% (3/8) 
62% (5/8) 
0% (0/8) 
25% (2/8) 
75% (6/8) 
0% (0/8) 
50% (4/8) 
50% (4/8) 
0% (0/8) 
SWTPEG  (N=7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
0% (0/7) 
100% (7/7) 
0% (0/7) 
TEN  (N=5) 
0% (0/5) 
100% (5/5) 
0% (0/5) 
0% (0/5) 
100% (5/5) 
0% (0/5) 
0% (0/5) 
100% (5/5) 
0% (0/5) 
WPNN  (N=6) 
33% (2/6) 
67% (4/6) 
0% (0/6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
YPEN  (N=9) 
22% (2/9) 
78% (7/9) 
0% (0/9) 
11% (1/9) 
89% (8/9) 
0% (0/9) 
11% (1/9) 
89% (8/9) 
0% (0/9) 
 

 
32 
Table 23 (continued): Health Boards and Trusts that could provide epilepsy investigation services. 
Country/network 
Portable EEG on ward area 
Yes 
No 
Uncertain 
England and Wales (N=115) 
62% (71/115) 
37% (42/115) 
2% (2/115) 
England  (N=109) 
60% (65/109) 
39% (42/109) 
2% (2/109) 
Wales (N=6) 
100% (6/6) 
0% (0/6) 
0% (0/6) 
 
 
 
 
BRPNF  (N=12) 
67% (8/12) 
25% (3/12) 
8% (1/12) 
CEWT  (N=4) 
75% (3/4) 
25% (1/4) 
0% (0/4) 
EPEN  (N=8) 
62% (5/8) 
38% (3/8) 
0% (0/8) 
EPIC  (N=7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
NTPEN  (N=15) 
47% (7/15) 
53% (8/15) 
0% (0/15) 
NWEIG  (N=9) 
56% (5/9) 
33% (3/9) 
11% (1/9) 
ORENG  (N=7) 
86% (6/7) 
14% (1/7) 
0% (0/7) 
PENNEC  (N=7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
SETPEG  (N=6) 
33% (2/6) 
67% (4/6) 
0% (0/6) 
SWEP  (N=5) 
100% (5/5) 
0% (0/5) 
0% (0/5) 
SWIPE  (N=8) 
88% (7/8) 
12% (1/8) 
0% (0/8) 
SWTPEG  (N=7) 
86% (6/7) 
14% (1/7) 
0% (0/7) 
TEN  (N=5) 
40% (2/5) 
60% (3/5) 
0% (0/5) 
WPNN  (N=6) 
50% (3/6) 
50% (3/6) 
0% (0/6) 
YPEN  (N=9) 
67% (6/9) 
33% (3/9) 
0% (0/9) 

 
33 
Service contact  
 
98% (113/115) of Heath Boards and Trusts reported availability of specialist epilepsy advice 
between scheduled reviews across England and Wales, (Table 24); increasing from the previous 
results.  
 
Figure 8 shows a comparison of availability of specialist advice between scheduled reviews in 
Round 3 April 2018, November 2019 and November 2020. 
 
 
Figure 8:  Percentage availability of specialist advice between scheduled reviews in Round 3 
April 2018, November 2019, November 2020 and November 2021. 
 
Half, 48% (55/115) of Health Boards and Trusts described a typical response time of the next 
weekday, Table 26. Initial specialist advice was ‘typically’ provided by an epilepsy specialist 
nurse 46% (53/115), Table 27. 
 
4%
1%
1%
0%
49%
49%
55%
62%
7%
7%
8%
4%
10%
10%
10%
10%
26%
29%
25%
23%
1%
1%
1%
0%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
Round
3
Apr
2018
Round
3
Nov
2019
Round
3
Nov
2020
Round
3
Nov
2021
Round
3
Apr
2018
Round
3
Nov
2019
Round
3
Nov
2020
Round
3
Nov
2021
Round
3
Apr
2018
Round
3
Nov
2019
Round
3
Nov
2020
Round
3
Nov
2021
Some weekdays
All weekdays
All weekdays and out of hours
Available 52 weeks of the year
Not available 52 weeks of the year

 
34 
In the 12% (14/115) of Health Boards and Trusts that selected other, advice is typically provided 
by; both a consultant paediatrician with expertise in epilepsy and an epilepsy specialist nurse 
(10/115); a combination of all three (3/115); a community paediatrician (1/115).  
Figure 9 shows a comparison of the typical response time for specialist advice in Round 3 April 
2018, November 2019, November 2020 and November 2021. 
Figure 10 shows a comparison of professionals who ‘typically’ provided initial specialist advice in 
Round 3 April 2018, November 2019, November 2020 and November 2021. 
84% (97/115) of Trusts and Health Boards reported to have a clear point of contact for non-
paediatric professionals seeking paediatric epilepsy support across England and Wales 
(Table 28). 
Figure 11 shows a comparison of Health Boards and Trusts with evidence/no evidence of a clear 
point of contact for non-paediatric professionals seeking paediatric epilepsy support in 
November 2019, November 2020 and November 2021. 
 
 
Figure 9: Typical response time for specialist advice in Round 3 April 2018, November 2019 
November 2020 and November 2021. 
 
13%
40%
36%
12%
8%
45%
37%
11%
10%
50%
31%
9%
8%
48%
35%
8%
0%
10%
20%
30%
40%
50%
60%
Same weekday
Next weekday
3-4 weekdays
Within the working
week
Percentage of Health Boards and Trusts
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Apr 2020
Round 3
Nov 2021

 
35 
Figure 10: Professional who ‘typically’ provides initial specialist advice in November 2019, 
November 2020 and November 2021. 
 
 
 
Figure 11: Health Boards and Trusts with evidence of a clear point of contact for non-paediatric 
professionals seeking paediatric epilepsy support in November 2019, November 2020 and 
November 2021.
44%
43%
2%
11%
41%
46%
2%
12%
37%
50%
2%
12%
39%
46%
1%
12%
0%
10%
20%
30%
40%
50%
Consultant
Paediatrician with
'expertise in epilepsy'
Epilepst specialist
nurse
Paediatric neurologist
Other
Percentage of Trusts and Health Boards 
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Apr 2020
Round 3
Nov 2021
77%
24%
83%
17%
84%
16%
0%
20%
40%
60%
80%
100%
Yes
No
Percentage of Trusts and Health Boards 
Round 3
Nov 2019
Round 3
Nov 2020
Round 3
Nov 2021

 
36 
Table 24: Health Boards and Trusts providing specialist advice between scheduled reviews. 
 
Country/network 
Yes 
No 
England and Wales (N=115) 
98% (113/115) 
2% (2/115) 
England  (N=109) 
99% (108/109) 
1% (1/109) 
Wales (N=6) 
83% (5/6) 
17% (1/6) 
 
 
 
BRPNF  (N=12) 
100% (12/12) 
0% (0/12) 
CEWT  (N=4) 
100% (4/4) 
0% (0/4) 
EPEN  (N=8) 
100% (8/8) 
0% (0/8) 
EPIC  (N=7) 
100% (7/7) 
0% (0/7) 
NTPEN  (N=15) 
100% (15/15) 
0% (0/15) 
NWEIG  (N=9) 
100% (9/9) 
0% (0/9) 
ORENG  (N=7) 
100% (7/7) 
0% (0/7) 
PENNEC  (N=7) 
100% (7/7) 
0% (0/7) 
SETPEG  (N=6) 
100% (6/6) 
0% (0/6) 
SWEP  (N=5) 
80% (4/5) 
20% (1/5) 
SWIPE  (N=8) 
100% (8/8) 
0% (0/8) 
SWTPEG  (N=7) 
100% (7/7) 
0% (0/7) 
TEN  (N=5) 
100% (5/5) 
0% (0/5) 
WPNN  (N=6) 
83% (5/6) 
17% (1/6) 
YPEN  (N=9) 
100% (9/9) 
0% (0/9) 

 
37 
Table 25: Availability of Health Boards and Trusts between scheduled reviews. 
 
Country/network 
Available 52 weeks of the year 
Not available 52 weeks of the year 
Some weekdays 
Every weekday 
Every weekday 
and out of hours 
Some weekdays 
Every weekday 
Every weekday 
and out of hours 
England and Wales 
(N=115) 
0% (0/115) 
62% (71/115) 
4% (5/115) 
10% (11/115) 
23% (26/115) 
0% (0/115) 
England  (N=109) 
0% (0/109) 
62% (68/109) 
5% (5/109) 
8% (9/109) 
24% (26/109) 
0% (0/109) 
Wales (N=6) 
0% (0/6) 
50% (3/6) 
0% (0/6) 
33% (2/6) 
0% (0/6) 
0% (0/6) 
 
 
 
 
 
 
 
BRPNF  (N=12) 
0% (0/12) 
58% (7/12) 
0% (0/12) 
8% (1/12) 
33% (4/12) 
0% (0/12) 
CEWT  (N=4) 
0% (0/4) 
100% (4/4) 
0% (0/4) 
0% (0/4) 
0% (0/4) 
0% (0/4) 
EPEN  (N=8) 
0% (0/8) 
75% (6/8) 
0% (0/8) 
0% (0/8) 
25% (2/8) 
0% (0/8) 
EPIC  (N=7) 
0% (0/7) 
86% (6/7) 
0% (0/7) 
14% (1/7) 
0% (0/7) 
0% (0/7) 
NTPEN  (N=15) 
0% (0/15) 
53% (8/15) 
7% (1/15) 
13% (2/15) 
27% (4/15) 
0% (0/15) 
NWEIG  (N=9) 
0% (0/9) 
78% (7/9) 
0% (0/9) 
11% (1/9) 
11% (1/9) 
0% (0/9) 
ORENG  (N=7) 
0% (0/7) 
86% (6/7) 
0% (0/7) 
0% (0/7) 
14% (1/7) 
0% (0/7) 
PENNEC  (N=7) 
0% (0/7) 
57% (4/7) 
14% (1/7) 
29% (2/7) 
0% (0/7) 
0% (0/7) 
SETPEG  (N=6) 
0% (0/6) 
50% (3/6) 
0% (0/6) 
0% (0/6) 
50% (3/6) 
0% (0/6) 
SWEP  (N=5) 
0% (0/5) 
60% (3/5) 
0% (0/5) 
20% (1/5) 
0% (0/5) 
0% (0/5) 
SWIPE  (N=8) 
0% (0/8) 
38% (3/8) 
12% (1/8) 
25% (2/8) 
25% (2/8) 
0% (0/8) 
SWTPEG  (N=7) 
0% (0/7) 
29% (2/7) 
14% (1/7) 
14% (1/7) 
43% (3/7) 
0% (0/7) 
TEN  (N=5) 
0% (0/5) 
40% (2/5) 
20% (1/5) 
0% (0/5) 
40% (2/5) 
0% (0/5) 
WPNN  (N=6) 
0% (0/6) 
50% (3/6) 
0% (0/6) 
0% (0/6) 
33% (2/6) 
0% (0/6) 
YPEN  (N=9) 
0% (0/9) 
78% (7/9) 
0% (0/9) 
0% (0/9) 
22% (2/9) 
0% (0/9) 
 

 
38 
Table 26: Typical response time to specialist advice. 
 
Country/network 
Same 
weekday 
Next weekday 
3-4 weekdays 
Within the 
working week 
England and Wales 
(N=115) 
8% (9/115) 
48% (55/115) 
35% (40/115) 
8% (9/115) 
England  (N=109) 
8% (9/109) 
50% (54/109) 
34% (37/109) 
7% (8/109) 
Wales (N=6) 
0% (0/6) 
17% (1/6) 
50% (3/6) 
17% (1/6) 
 
 
 
 
 
BRPNF  (N=12) 
0% (0/12) 
50% (6/12) 
33% (4/12) 
17% (2/12) 
CEWT  (N=4) 
0% (0/4) 
50% (2/4) 
50% (2/4) 
0% (0/4) 
EPEN  (N=8) 
0% (0/8) 
38% (3/8) 
62% (5/8) 
0% (0/8) 
EPIC  (N=7) 
0% (0/7) 
71% (5/7) 
29% (2/7) 
0% (0/7) 
NTPEN  (N=15) 
13% (2/15) 
47% (7/15) 
27% (4/15) 
13% (2/15) 
NWEIG  (N=9) 
11% (1/9) 
67% (6/9) 
22% (2/9) 
0% (0/9) 
ORENG  (N=7) 
0% (0/7) 
43% (3/7) 
43% (3/7) 
14% (1/7) 
PENNEC  (N=7) 
14% (1/7) 
57% (4/7) 
14% (1/7) 
14% (1/7) 
SETPEG  (N=6) 
0% (0/6) 
50% (3/6) 
33% (2/6) 
17% (1/6) 
SWEP  (N=5) 
0% (0/5) 
0% (0/5) 
60% (3/5) 
20% (1/5) 
SWIPE  (N=8) 
38% (3/8) 
38% (3/8) 
25% (2/8) 
0% (0/8) 
SWTPEG  (N=7) 
0% (0/7) 
71% (5/7) 
29% (2/7) 
0% (0/7) 
TEN  (N=5) 
20% (1/5) 
40% (2/5) 
40% (2/5) 
0% (0/5) 
WPNN  (N=6) 
0% (0/6) 
17% (1/6) 
67% (4/6) 
0% (0/6) 
YPEN  (N=9) 
11% (1/9) 
56% (5/9) 
22% (2/9) 
11% (1/9) 
 
 
 
 
 
 

 
39 
Table 27: Professional who ‘typically’ provides initial specialist advice.  
 
Country/network 
ESN 
Consultant with 
‘expertise in 
epilepsy’ 
Paediatric 
neurologist 
Other 
England and Wales 
(N=115) 
46% (53/115) 
39% (45/115) 
1% (1/115) 
12% (14/115) 
England  (N=109) 
47% (51/109) 
39% (42/109) 
1% (1/109) 
13% (14/109) 
Wales (N=6) 
33% (2/6) 
50% (3/6) 
0% (0/6) 
0% (0/6) 
 
 
 
 
 
BRPNF  (N=12) 
33% (4/12) 
50% (6/12) 
0% (0/12) 
17% (2/12) 
CEWT  (N=4) 
50% (2/4) 
25% (1/4) 
0% (0/4) 
25% (1/4) 
EPEN  (N=8) 
62% (5/8) 
38% (3/8) 
0% (0/8) 
0% (0/8) 
EPIC  (N=7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
0% (0/7) 
NTPEN  (N=15) 
53% (8/15) 
40% (6/15) 
7% (1/15) 
0% (0/15) 
NWEIG  (N=9) 
67% (6/9) 
22% (2/9) 
0% (0/9) 
11% (1/9) 
ORENG  (N=7) 
43% (3/7) 
43% (3/7) 
0% (0/7) 
14% (1/7) 
PENNEC  (N=7) 
29% (2/7) 
57% (4/7) 
0% (0/7) 
14% (1/7) 
SETPEG  (N=6) 
33% (2/6) 
50% (3/6) 
0% (0/6) 
17% (1/6) 
SWEP  (N=5) 
40% (2/5) 
40% (2/5) 
0% (0/5) 
0% (0/5) 
SWIPE  (N=8) 
50% (4/8) 
25% (2/8) 
0% (0/8) 
25% (2/8) 
SWTPEG  (N=7) 
71% (5/7) 
14% (1/7) 
0% (0/7) 
14% (1/7) 
TEN  (N=5) 
20% (1/5) 
60% (3/5) 
0% (0/5) 
20% (1/5) 
WPNN  (N=6) 
33% (2/6) 
33% (2/6) 
0% (0/6) 
17% (1/6) 
YPEN  (N=9) 
33% (3/9) 
44% (4/9) 
0% (0/9) 
22% (2/9) 
 
 
 
 

 
40 
Table 28: Health Boards and Trusts with evidence of a clear point of contact for non-
paediatric professionals seeking paediatric epilepsy support. 
 
Country/network 
Yes 
No 
England and Wales (N=115) 
84% (97/115) 
16% (18/115) 
England  (N=109) 
84% (92/109) 
16% (17/109) 
Wales (N=6) 
83% (5/6) 
17% (1/6) 
 
 
 
BRPNF  (N=12) 
67% (8/12) 
33% (4/12) 
CEWT  (N=4) 
75% (3/4) 
25% (1/4) 
EPEN  (N=8) 
100% (8/8) 
0% (0/8) 
EPIC  (N=7) 
86% (6/7) 
14% (1/7) 
NTPEN  (N=15) 
93% (14/15) 
7% (1/15) 
NWEIG  (N=9) 
89% (8/9) 
11% (1/9) 
ORENG  (N=7) 
86% (6/7) 
14% (1/7) 
PENNEC  (N=7) 
71% (5/7) 
29% (2/7) 
SETPEG  (N=6) 
100% (6/6) 
0% (0/6) 
SWEP  (N=5) 
80% (4/5) 
20% (1/5) 
SWIPE  (N=8) 
88% (7/8) 
12% (1/8) 
SWTPEG  (N=7) 
100% (7/7) 
0% (0/7) 
TEN  (N=5) 
80% (4/5) 
20% (1/5) 
WPNN  (N=6) 
50% (3/6) 
50% (3/6) 
YPEN  (N=9) 
89% (8/9) 
11% (1/9) 
 
 

 
41 
Transition 
 
Table 29 shows 13% (15/115) of Health Boards and Trusts did not have agreed referral pathway 
for young people to adult services. An outpatient clinic specifically for young people with 
epilepsies was reported to be in place in 43% (49/115) of Health Boards and Trusts, Table 30. 
The median age of acceptance into these clinics was 14 years with a minimum acceptance age 
of 12 years and a maximum acceptance age of 16, Table 31. 
 
 
 
Figure 12: Clinics for young people across Rounds 1, Round 2, Round 3 April 2018, Round 3 
November 2019, November 2020 and November 2021 
 
65% (75/115) of Health Boards and Trusts reported to have outpatient service for epilepsy 
where there is a presence of both adult and paediatric professionals, Table 32.  
 
In Health Boards and Trusts that responded other, the responses included: 
• 
Adult and Paediatric nurse led clinic, 
• 
Adult epilepsy nurse attends teenage clinics, 
• 
Single joint transition appointment takes place at the adult centre, 
• 
Process varies between consultants or hospital sites, 
• 
Single joint appointment and Transition Clinic for one consultant only, 
• 
Joint transition appointment /Sees Neurologist/back to paediatrics for final 
appointment, 
• 
Joint appointment in one site only. 
 
Figure 13 shows a comparison of composition of joint transition in Round 3 April 2018, 
November 2019, November 2020 and November 2021. 
 
19%
81%
27%
73%
0%
20%
40%
60%
80%
100%
Yes
No
Yes
No
Round 1
Nov 2009
Round 2
Jan 2014
Percentage of epilepsy units
36%
64%
37%
63%
39%
61%
43%
57%
0%
20%
40%
60%
80%
100%
Yes
No
Yes
No
Yes
No
Yes
No
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Nov 2020
Round 3
Nov 2021
Percentage of Trusts and Health 
Boards 

 
42 
 
Figure 13: Composition of the joint transition process in Round 3 April 2018, November 2019, 
November 2020 and November 2021. 
Table 35 shows 62% (71/115) of Health Boards and Trusts, used structured resources (for 
example Ready, Steady, Go) to support transition to adult services. 
Various professionals that were indicated as routinely involved in the transition or transfer of 
paediatric patients to adult services. 86% (99/115) of the Health Boards and Trusts had an adult 
neurologist supporting transition to adult services, whilst 65% (75/115) had an adult ESN 
supporting the transition as shown on Table 36.  Other responses included: 
 
• 
Adult Learning Disability teams or specific professionals, 
• 
Consultant Psychiatrist, 
• 
GPs, 
• 
GP and Adult Neurologist, 
• 
Neurology specialist nurse  
• 
Adult neurologist and neurophysiologist in Neurophysiology meeting, 
• 
Learning Disability transition nurses, 
• 
Youth worker from an epilepsy charity may attend, 
• 
Transition nurses, 
• 
Input from the adult services/professionals though not present in clinic, 
• 
Paediatric Epilepsy Nurse Specialist. 
 
Figure 14 shows a comparison of professionals who were routinely involved in transition or 
transfer to adult services in Round 3 April 2018, November 2019, November 2020 and 
November 2021. 
61%
6%
24%
9%
54%
9%
28%
9%
49%
7%
34%
10%
59%
5%
28%
8%
0%
10%
20%
30%
40%
50%
60%
70%
Single joint
appointment
Several joint
appointments
Mix of joint and
individual
appointments
Other
Percentage of Trusts and Health Boards 
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Nov 2020
Round 3
Nov 2021

 
43 
 
 
Figure 14: Professionals routinely involved in transition or transfer to adult services in Round 3 
April 2018, November 2019, November 2020 and November 2021. 
 
 
 
Figure 15: Percentage of Health Boards and Trusts that were using structured resources to 
support transition in Round 3 April 2018, November 2019, November 2020 and November 2021. 
78%
51%
10%
2%
14%
84%
54%
15%
2%
13%
85%
63%
19%
5%
15%
86%
65%
20%
4%
18%
0%
20%
40%
60%
80%
100%
Adult neurologist
Adult ESN
Adult learning
difficulty
Youth worker
Other
Percentage of Trusts and Health Boards 
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Nov 2020
Round 3
Nov 2021
58%
42%
51%
49%
66%
34%
62%
38%
0%
10%
20%
30%
40%
50%
60%
70%
Yes
No
Percentage of Trusts and Health Boards 
Round 3
Nov 2019
Round 3
Apr 2018
Round 3
Apr 2020
Round 3
Nov 2021

 
44 
Table 29: Health Boards and Trusts that had an agreed referral pathway to adult services. 
 
 
Country/network 
 
Yes 
 
No 
England and Wales (N=115) 
87% (100/115) 
13% (15/115) 
England  (N=109) 
86% (94/109) 
14% (15/109) 
Wales (N=6) 
100% (6/6)  
0% (0/6) 
 
 
 
BRPNF  (N=12) 
75% (9/12) 
25% (3/12) 
CEWT  (N=4) 
100% (4/4) 
0% (0/4) 
EPEN  (N=8) 
88% (7/8) 
12% (1/8) 
EPIC  (N=7) 
86% (6/7) 
14% (1/7) 
NTPEN  (N=15) 
87% (13/15) 
13% (2/15) 
NWEIG  (N=9) 
89% (8/9) 
11% (1/9) 
ORENG  (N=7) 
86% (6/7) 
14% (1/7) 
PENNEC  (N=7) 
57% (4/7) 
43% (3/7) 
SETPEG  (N=6) 
100% (6/6) 
0% (0/6) 
SWEP  (N=5) 
100% (5/5) 
0% (0/5) 
SWIPE  (N=8) 
88% (7/8) 
12% (1/8) 
SWTPEG  (N=7) 
100% (7/7) 
0% (0/7) 
TEN  (N=5) 
80% (4/5) 
20% (1/5) 
WPNN  (N=6) 
83% (5/6) 
17% (1/6) 
YPEN  (N=9) 
100% (9/9) 
0% (0/9) 

 
45 
Table 30: Health Boards and Trusts that had an outpatient 
clinic specifically for young people with epilepsies. 
Country/network 
Yes 
No 
England and Wales 
(N=115) 
43% (49/115) 
57% (66/115) 
England  (N=109) 
42% (46/109) 
58% (63/109) 
Wales (N=6) 
50% (3/6) 
50% (3/6) 
 
 
 
BRPNF  (N=12) 
33% (4/12) 
67% (8/12) 
CEWT  (N=4) 
75% (3/4) 
25% (1/4) 
EPEN  (N=8) 
75% (6/8) 
25% (2/8) 
EPIC  (N=7) 
29% (2/7) 
71% (5/7) 
NTPEN  (N=15) 
40% (6/15) 
60% (9/15) 
NWEIG  (N=9) 
56% (5/9) 
44% (4/9) 
ORENG  (N=7) 
29% (2/7) 
71% (5/7) 
PENNEC  (N=7) 
14% (1/7) 
86% (6/7) 
SETPEG  (N=6) 
50% (3/6) 
50% (3/6) 
SWEP  (N=5) 
40% (2/5) 
60% (3/5) 
SWIPE  (N=8) 
50% (4/8) 
50% (4/8) 
SWTPEG  (N=7) 
71% (5/7) 
29% (2/7) 
TEN  (N=5) 
20% (1/5) 
80% (4/5) 
WPNN  (N=6) 
50% (3/6) 
50% (3/6) 
YPEN  (N=9) 
22% (2/9) 
78% (7/9) 
 
 
Table 31: Age at which the outpatient clinic typically accepted young 
people with epilepsies 
Country/network 
Mean age 
Median age 
Minimum 
age 
Maximum 
age 
England and Wales 
(N=49) 
14.7 
15 
12 
16 
England  (N=46) 
14.7 
15 
12 
15 
Wales (N=3) 
16 
16 
16 
16 
 
 
 
  
  
BRPNF  (N=4) 
15 
15 
14 
15 
CEWT  (N=3) 
13.3 
13 
12 
13 
EPEN  (N=6) 
14.3 
14.5 
13 
14.5 
EPIC  (N=2) 
15 
15 
14 
15 
NTPEN  (N=6) 
13.7 
13.5 
12 
13.5 
NWEIG  (N=5) 
14 
14 
12 
14 
ORENG  (N=2) 
16 
16 
16 
16 
PENNEC  (N=1) 
14 
14 
14 
14 
SETPEG  (N=3) 
16 
16 
16 
16 
SWEP  (N=2) 
16 
16 
16 
16 
SWIPE  (N=4) 
16.5 
16 
16 
16 
SWTPEG  (N=5) 
14.8 
16 
12 
16 
TEN  (N=1) 
14 
14 
14 
14 
WPNN  (N=3) 
15 
16 
13 
16 
YPEN  (N=2) 
14.5 
14.5 
14 
14.5 
 

 
46 
Table 32: Health Boards and Trusts that had an 
outpatient service involving adult and paediatric 
professionals. 
Country/network 
Yes 
No 
England and Wales 
(N=115) 
65% (75/115) 
35% (40/115) 
England (N=109) 
64% (70/109) 
36% (39/109) 
Wales (N=6) 
83% (5/6) 
17% (1/6) 
 
 
 
BRPNF  (N=12) 
67% (8/12) 
33% (4/12) 
CEWT  (N=4) 
50% (2/4) 
50% (2/4) 
EPEN  (N=8) 
75% (6/8) 
25% (2/8) 
EPIC  (N=7) 
71% (5/7) 
29% (2/7) 
NTPEN  (N=15) 
60% (9/15) 
40% (6/15) 
NWEIG  (N=9) 
67% (6/9) 
33% (3/9) 
ORENG  (N=7) 
71% (5/7) 
29% (2/7) 
PENNEC  (N=7) 
29% (2/7) 
71% (5/7) 
SETPEG  (N=6) 
67% (4/6) 
33% (2/6) 
SWEP  (N=5) 
80% (4/5) 
20% (1/5) 
SWIPE  (N=8) 
88% (7/8) 
12% (1/8) 
SWTPEG  (N=7) 
100% (7/7) 
0% (0/7) 
TEN  (N=5) 
0% (0/5) 
100% (5/5) 
WPNN  (N=7) 
67% (4/6) 
33% (2/6) 
YPEN  (N=9) 
67% (6/9) 
33% (3/9) 
 
Table 33: Structure of outpatient service involving both adult and paediatric 
professionals. 
Country/network 
Several joint 
appointments 
Single joint 
appointments 
Mixed (joint 
and 
individual) 
Other 
England and 
Wales (N=75) 
5% (4/75) 
59% (44/75) 
28% (21/75) 
8% (6/75) 
England (N=70) 
4% (3/70) 
61% (43/70) 
26% (18/70) 
9% (6/70) 
Wales (N=5) 
20% (1/5) 
20% (1/5) 
60% (3/5) 
0% (0/5) 
 
 
 
 
 
BRPNF  (N=8) 
12% (1/8) 
62% (5/8) 
25% (2/8) 
0% (0/8) 
CEWT  (N=2) 
50% (1/2) 
0% (0/2) 
0% (0/2) 
50% (1/2) 
EPEN  (N=6) 
0% (0/6) 
50% (3/6) 
33% (2/6) 
17% (1/6) 
EPIC  (N=5) 
0% (0/5) 
60% (3/5) 
20% (1/5) 
20% (1/5) 
NTPEN  (N=9) 
11% (1/9) 
67% (6/9) 
22% (2/9) 
0% (0/9) 
NWEIG  (N=6) 
0% (0/6) 
83% (5/6) 
17% (1/6) 
0% (0/6) 
ORENG  (N=5) 
0% (0/5) 
60% (3/5) 
40% (2/5) 
0% (0/5) 
PENNEC  (N=2) 
0% (0/2) 
50% (1/2) 
0% (0/2) 
50% (1/2) 
SETPEG  (N=4) 
0% (0/4) 
75% (3/4) 
25% (1/4) 
0% (0/4) 
SWEP  (N=4) 
25% (1/4) 
25% (1/4) 
50% (2/4) 
0% (0/4) 
SWIPE  (N=7) 
0% (0/7) 
43% (3/7) 
43% (3/7) 
14% (1/7) 
SWTPEG  (N=7) 
0% (0/7) 
57% (4/7) 
29% (2/7) 
14% (1/7) 
TEN  (N=0) 
0% (0/0) 
0% (0/0) 
0% (0/0) 
0% (0/0) 
WPNN  (N=4) 
0% (0/4) 
25% (1/4) 
75% (3/4) 
0% (0/4) 
YPEN  (N=6) 
0% (0/6) 
100% (6/6) 
0% (0/6) 
0% (0/6) 
 
 

 
47 
Table 34: Estimated percentage of young people transferred to 
adult services through a joint professional process. 
Country/network 
Mean 
Minimum 
Maximum 
England and Wales 
(N=75) 
72% 
0% 
100% 
England  (N=70) 
74% 
0% 
100% 
Wales (N=5) 
41% 
20% 
75% 
 
 
 
 
BRPNF  (N=8) 
75% 
3% 
100% 
CEWT  (N=2) 
60% 
50% 
70% 
EPEN  (N=6) 
66% 
1% 
96% 
EPIC  (N=5) 
66% 
20% 
100% 
NTPEN  (N=9) 
74% 
25% 
100% 
NWEIG  (N=6) 
78% 
50% 
100% 
ORENG  (N=5) 
78% 
40% 
100% 
PENNEC  (N=2) 
62% 
25% 
100% 
SETPEG  (N=4) 
82% 
50% 
100% 
SWEP  (N=4) 
46% 
30% 
75% 
SWIPE  (N=7) 
58% 
5% 
90% 
SWTPEG  (N=7) 
90% 
45% 
100% 
TEN  (N=0) 
0% 
0% 
0% 
WPNN  (N=4) 
68% 
40% 
100% 
YPEN  (N=6) 
82% 
60% 
100% 
 
Table 35: Health Boards and Trusts that were using structured 
resources to support transition. 
Country/network 
Yes 
No 
England and Wales 
(N=115) 
62% (71/115) 
38% (44/115) 
England  (N=109) 
64% (70/109) 
64% (70/109) 
Wales (N=6) 
17% (1/6) 
17% (1/6) 
 
 
 
BRPNF  (N=12) 
42% (5/12) 
58% (7/12) 
CEWT  (N=4) 
25% (1/4) 
75% (3/4) 
EPEN  (N=8) 
88% (7/8) 
12% (1/8) 
EPIC  (N=7) 
29% (2/7) 
71% (5/7) 
NTPEN  (N=15) 
60% (9/15) 
40% (6/15) 
NWEIG  (N=9) 
89% (8/9) 
11% (1/9) 
ORENG  (N=7) 
57% (4/7) 
43% (3/7) 
PENNEC  (N=7) 
71% (5/7) 
29% (2/7) 
SETPEG  (N=6) 
50% (3/6) 
50% (3/6) 
SWEP  (N=5) 
20% (1/5) 
80% (4/5) 
SWIPE  (N=8) 
100% (8/8) 
 
SWTPEG  (N=7) 
71% (5/7) 
29% (2/7) 
TEN  (N=5) 
60% (3/5) 
40% (2/5) 
WPNN  (N=7) 
50% (3/6) 
50% (3/6) 
YPEN  (N=9) 
78% (7/9) 
22% (2/9) 
 
 

 
48 
Table 36: Adult professionals routinely involved in transition or transfer to adult services. 
Country/network 
Adult epilepsy 
specialist nurse 
Adult learning difficulty 
ESN 
Adult neurologist 
Youth worker 
Other 
England and Wales 
(N=115) 
65% (75/115) 
20% (23/115) 
86% (99/115) 
4% (5/115) 
18% (21/115) 
England  (N=109) 
64% (70/109) 
18% (20/109) 
85% (93/109) 
5% (5/109) 
17% (19/109) 
Wales (N=6) 
83% (5/6) 
50% (3/6) 
100% (6/6) 
0% (0/6) 
33% (2/6) 
 
 
 
 
 
 
BRPNF  (N=12) 
50% (6/12) 
8% (1/12) 
83% (10/12) 
0% (0/12) 
17% (2/12) 
CEWT  (N=4) 
75% (3/4) 
25% (1/4) 
75% (3/4) 
0% (0/4) 
0% (0/4) 
EPEN  (N=8) 
88% (7/8) 
38% (3/8) 
88% (7/8) 
12% (1/8) 
25% (2/8) 
EPIC  (N=7) 
29% (2/7) 
0% (0/7) 
100% (7/7) 
0% (0/7) 
43% (3/7) 
NTPEN  (N=15) 
40% (6/15) 
7% (1/15) 
93% (14/15) 
13% (2/15) 
7% (1/15) 
NWEIG  (N=9) 
78% (7/9) 
0% (0/9) 
78% (7/9) 
0% (0/9) 
0% (0/9) 
ORENG  (N=7) 
86% (6/7) 
57% (4/7) 
100% (7/7) 
14% (1/7) 
29% (2/7) 
PENNEC  (N=7) 
57% (4/7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
29% (2/7) 
SETPEG  (N=6) 
67% (4/6) 
33% (2/6) 
100% (6/6) 
0% (0/6) 
17% (1/6) 
SWEP  (N=5) 
80% (4/5) 
60% (3/5) 
100% (5/5) 
0% (0/5) 
40% (2/5) 
SWIPE  (N=8) 
100% (8/8) 
38% (3/8) 
62% (5/8) 
0% (0/8) 
12% (1/8) 
SWTPEG  (N=7) 
71% (5/7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
0% (0/7) 
TEN  (N=5) 
80% (4/5) 
0% (0/5) 
80% (4/5) 
0% (0/5) 
0% (0/5) 
WPNN  (N=7) 
67% (4/6) 
17% (1/6) 
100% (6/6) 
17% (1/6) 
67% (4/6) 
YPEN  (N=9) 
56% (5/9) 
11% (1/9) 
78% (7/9) 
0% (0/9) 
11% (1/9) 

 
49 
Mental health  
 
Three quarters, 74% (85/115) of Health Boards and Trusts indicated they had no formal 
screening services for Attention Deficit Hyperactivity Disorder (ADHD), Autistic Spectrum 
Disorder (ASD) and mental health disorders, Table 37.  
 
Figure 16 shows the comparison of formal screening services in Round 3 April 2018, November 
2019, November 2020 and November 2021. 
 
Figure 16: Percentage of Health Boards and Trusts routinely providing formal screening 
services in Round 3 April 2018, November 2019, November 2020 and November 2021. 
Over half of Health Boards and Trusts, 52% (60/115) were not using any of the questionnaires 
that were listed for mental health screening, (Table 38). The questionnaires reported to be used 
by Health Boards and Trusts in mental health screening were: 
• 
8% (9/115) Connor’s Questionnaire,  
• 
11% (13/115) SDQ (Strength and Difficulties Questionnaire), 
• 
7% (8/115) Other. 
 
Other responses included: 
• 
York Questionnaire,  
• 
Vanderbilt questionnaire, 
• 
Social skills teacher questionnaire 
• 
Wellness questionnaire, 
• 
PI-ED, 
24%
24%
20%
72%
18%
18%
15%
77%
20%
19%
17%
75%
17%
17%
19%
74%
0%
20%
40%
60%
80%
100%
ADHD
ASD
Mental health
disorders
None
Percentage of Trusts and Health Boards 
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Nov 2020
Round 3
Nov 2021

 
50 
• 
Nice signs and symptoms of ASD checklist, 
• 
ADOS, 
• 
Locally prepared questionnaire, 
• 
Vanderbilt ADHD. 
 
31% (36/115) of Health Boards and Trusts did not have agreed referral pathways for children 
with mental health conditions. 65% (75/115) of Health Boards and Trusts had agreed referral 
pathways for children with anxiety; 66% (76/115) for depression; 65% (75/115) for mood 
disorder; 49% (56/115) for non-epileptic attack disorder, 5% (6/115) for other mental health 
conditions (Table 39).  
 
Other responses included: 
• 
Attention Deficit Hyperactivity Disorder  
• 
Behavioural and emotional, 
• 
Tic disorders,  
• 
OCD,  
• 
Eating disorders, 
• 
In-house mental health and adolescent medicine teams, 
• 
Referral to CAHMS or clinical psychology depending on clinical needs. 
 
Figure 17 shows the proportion of Health Boards and Trusts that had agreed referral pathways 
for children and young people with mental health conditions.
 
Figure 17: Percentage of Health Boards and Trusts that had agreed referral pathways for 
children and young people with mental health conditions in November 2019, November 2020 
and November 2021. 
54%
55%
54%
38%
7%
43%
61%
61%
59%
42%
6%
36%
65%
66%
65%
49%
5%
31%
0%
20%
40%
60%
80%
Anxiety
Depression
Mood disorder Non-epileptic
attack disorder
Other
None of the
above
Percentage of Trusts and Health Boards 
Round 3
Nov 2019
Round 3
Nov 2020
Round 3
Nov 2021

 
51 
Table 40 shows, in 18% (12/115) of Health Boards and Trusts mental health provision is 
facilitated within epilepsy clinics.  
6% (7/115) of Health Boards and Trusts could not refer to mental health assessment services, 
either within or outside of their Health Board or Trust, (Table 43).  
80% (92/115) of Health Boards and Trusts were able to refer to clinical psychology services; 90% 
(103/115) to psychiatric services; 42% (48/115)  to education psychology; 53% (61/115) to 
neuropsychology services and 85% (98/115) to formal developmental assessment.  
 
 
Figure 18: Percentage of Health Boards and Trusts that could refer to mental health services in 
Round 3 April 2018, November 2019, November 2020 and November 2021.
7%
49%
56%
79%
87%
91%
4%
46%
52%
79%
87%
93%
5%
45%
48%
76%
84%
90%
6%
42%
53%
80%
85%
90%
0%
20%
40%
60%
80%
100%
None
Educational psychology
Neuropsychology
Clinical psychology
Formal developmental
Psychiatric
Percentage of Trusts and Health Boards 
Round 3
Nov 2021
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Apr 2020

 
52 
Table 37: Health Boards and Trusts that formally screen for any of the listed conditions related 
to epilepsy. 
Country/network 
ADHD 
ASD 
Mental health 
disorders 
None 
England and Wales 
(N=115) 
17% (19/115) 
17% (19/115) 
19% (22/115) 
74% (85/115) 
England  (N=109) 
17% (19/109) 
17% (19/109) 
19% (21/109) 
73% (80/109) 
Wales (N=6) 
0% (0/6) 
0% (0/6) 
17% (1/6) 
83% (5/6) 
 
 
 
 
 
BRPNF  (N=12) 
33% (4/12) 
33% (4/12) 
17% (2/12) 
67% (8/12) 
CEWT  (N=4) 
25% (1/4) 
25% (1/4) 
0% (0/4) 
75% (3/4) 
EPEN  (N=8) 
0% (0/8) 
0% (0/8) 
12% (1/8) 
88% (7/8) 
EPIC  (N=7) 
14% (1/7) 
14% (1/7) 
14% (1/7) 
71% (5/7) 
NTPEN  (N=15) 
0% (0/15) 
0% (0/15) 
7% (1/15) 
93% (14/15) 
NWEIG  (N=9) 
11% (1/9) 
11% (1/9) 
22% (2/9) 
78% (7/9) 
ORENG  (N=7) 
43% (3/7) 
43% (3/7) 
29% (2/7) 
57% (4/7) 
PENNEC  (N=7) 
14% (1/7) 
14% (1/7) 
29% (2/7) 
71% (5/7) 
SETPEG  (N=6) 
17% (1/6) 
17% (1/6) 
17% (1/6) 
83% (5/6) 
SWEP  (N=5) 
0% (0/5) 
0% (0/5) 
20% (1/5) 
80% (4/5) 
SWIPE  (N=8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
100% (8/8) 
SWTPEG  (N=7) 
29% (2/7) 
29% (2/7) 
29% (2/7) 
57% (4/7) 
TEN  (N=5) 
60% (3/5) 
60% (3/5) 
20% (1/5) 
40% (2/5) 
WPNN  (N=7) 
17% (1/6) 
17% (1/6) 
33% (2/6) 
67% (4/6) 
YPEN  (N=9) 
11% (1/9) 
11% (1/9) 
44% (4/9) 
56% (5/9) 
 
 
 
 

 
53 
Table 38: Health Boards and Trusts using particular mental health screening questionnaires. 
 
Country/ 
network 
BDI – Beck 
Depression 
Inventory 
Connor’s 
Questionnaire 
Emotional 
Thermometers 
Tool 
GAD – 
Generalised 
Anxiety 
Disorder 
GAD 2 – 
Generalised 
Anxiety 
Disorder 2 
GAD 7 – 
Generalised 
Anxiety 
Disorder GAD 7 
HADS – 
Hospital 
Anxiety and 
Depression 
Scale 
MFQ – Mood 
and Feelings 
Questionnaire 
(Child, Parent, 
adult versions) 
NDDI -E 
Neurological 
Disorders 
Depression 
Inventory for 
Epilepsy 
England and 
Wales (N=115) 
1% (1/115) 
8% (9/115) 
0% (0/115) 
1% (1/115) 
0% (0/115) 
0% (0/115) 
0% (0/115) 
0% (0/115) 
0% (0/115) 
England  
(N=109) 
1% (1/109) 
8% (9/109) 
0% (0/109) 
0% (0/109) 
0% (0/109) 
0% (0/109) 
0% (0/109) 
0% (0/109) 
0% (0/109) 
Wales (N=6) 
0% (0/6) 
0% (0/6) 
0% (0/6) 
17% (1/6) 
0% (0/6) 
0% (0/6) 
0% (0/6) 
0% (0/6) 
0% (0/6) 
 
 
 
 
 
 
 
 
 
 
BRPNF  (N=12) 
0% (0/12) 
17% (2/12) 
0% (0/12) 
0% (0/12) 
0% (0/12) 
0% (0/12) 
0% (0/12) 
0% (0/12) 
0% (0/12) 
CEWT  (N=4) 
0% (0/4) 
0% (0/4) 
0% (0/4) 
0% (0/4) 
0% (0/4) 
0% (0/4) 
0% (0/4) 
0% (0/4) 
0% (0/4) 
EPEN  (N=8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
EPIC  (N=7) 
0% (0/7) 
14% (1/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
NTPEN  (N=15) 
0% (0/15) 
0% (0/15) 
0% (0/15) 
0% (0/15) 
0% (0/15) 
0% (0/15) 
0% (0/15) 
0% (0/15) 
0% (0/15) 
NWEIG  (N=9) 
0% (0/9) 
11% (1/9) 
0% (0/9) 
0% (0/9) 
0% (0/9) 
0% (0/9) 
0% (0/9) 
0% (0/9) 
0% (0/9) 
ORENG  (N=7) 
0% (0/7) 
29% (2/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
PENNEC  (N=7) 
0% (0/7) 
14% (1/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
SETPEG  (N=6) 
17% (1/6) 
0% (0/6) 
0% (0/6) 
0% (0/6) 
0% (0/6) 
0% (0/6) 
0% (0/6) 
0% (0/6) 
0% (0/6) 
SWEP  (N=5) 
0% (0/5) 
0% (0/5) 
0% (0/5) 
20% (1/5) 
0% (0/5) 
0% (0/5) 
0% (0/5) 
0% (0/5) 
0% (0/5) 
SWIPE  (N=8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
SWTPEG  (N=7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
TEN  (N=5) 
0% (0/5) 
20% (1/5) 
0% (0/5) 
0% (0/5) 
0% (0/5) 
0% (0/5) 
0% (0/5) 
0% (0/5) 
0% (0/5) 
WPNN  (N=7) 
0% (0/6) 
17% (1/6) 
0% (0/6) 
0% (0/6) 
0% (0/6) 
0% (0/6) 
0% (0/6) 
0% (0/6) 
0% (0/6) 
YPEN  (N=9) 
0% (0/9) 
0% (0/9) 
0% (0/9) 
0% (0/9) 
0% (0/9) 
0% (0/9) 
0% (0/9) 
0% (0/9) 
0% (0/9) 

 
54 
 
Table 38 (continued): Health Boards and Trusts using particular mental health screening questionnaires 
 
 
Country/network 
PHQ – Patient Health 
Questionnaire, PHQ 2, PHQ 9 
SDQ (Strength and 
Difficulties Questionnaire) 
Other 
None of the above 
England and Wales (N=115) 
1% (1/115) 
11% (13/115) 
7% (8/115) 
52% (60/115) 
England  (N=109) 
0% (0/109) 
12% (13/109) 
7% (8/109) 
51% (56/109) 
Wales (N=6) 
17% (1/6) 
0% (0/6) 
0% (0/6) 
67% (4/6) 
 
 
 
 
 
BRPNF  (N=12) 
0% (0/12) 
25% (3/12) 
8% (1/12) 
33% (4/12) 
CEWT  (N=4) 
0% (0/4) 
0% (0/4) 
0% (0/4) 
75% (3/4) 
EPEN  (N=8) 
0% (0/8) 
0% (0/8) 
12% (1/8) 
62% (5/8) 
EPIC  (N=7) 
0% (0/7) 
0% (0/7) 
14% (1/7) 
43% (3/7) 
NTPEN  (N=15) 
0% (0/15) 
7% (1/15) 
0% (0/15) 
40% (6/15) 
NWEIG  (N=9) 
0% (0/9) 
11% (1/9) 
0% (0/9) 
89% (8/9) 
ORENG  (N=7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
43% (3/7) 
PENNEC  (N=7) 
0% (0/7) 
14% (1/7) 
14% (1/7) 
43% (3/7) 
SETPEG  (N=6) 
0% (0/6) 
17% (1/6) 
0% (0/6) 
50% (3/6) 
SWEP  (N=5) 
20% (1/5) 
0% (0/5) 
0% (0/5) 
60% (3/5) 
SWIPE  (N=8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
75% (6/8) 
SWTPEG  (N=7) 
0% (0/7) 
29% (2/7) 
14% (1/7) 
43% (3/7) 
TEN  (N=5) 
0% (0/5) 
20% (1/5) 
0% (0/5) 
60% (3/5) 
WPNN  (N=7) 
0% (0/6) 
17% (1/6) 
17% (1/6) 
50% (3/6) 
YPEN  (N=9) 
0% (0/9) 
22% (2/9) 
22% (2/9) 
44% (4/9) 

 
55 
 
Table 39: Health Boards and Trusts with agreed referral pathways for children and young people with mental health conditions. 
Country/network 
Anxiety 
Depression 
 
Mood 
Disorder 
 
Non-epileptic 
attack disorders 
Other 
None of the above 
England and Wales (N=115) 
65% (75/115) 
66% (76/115) 
65% (75/115) 
49% (56/115) 
5% (6/115) 
31% (36/115) 
England  (N=109) 
67% (73/109) 
68% (74/109) 
67% (73/109) 
51% (56/109) 
5% (5/109) 
29% (32/109) 
Wales (N=6) 
33% (2/6) 
33% (2/6) 
33% (2/6) 
0% (0/6) 
17% (1/6) 
67% (4/6) 
 
 
 
 
 
 
 
BRPNF  (N=12) 
67% (8/12) 
67% (8/12) 
67% (8/12) 
50% (6/12) 
0% (0/12) 
25% (3/12) 
CEWT  (N=4) 
75% (3/4) 
75% (3/4) 
75% (3/4) 
75% (3/4) 
25% (1/4) 
25% (1/4) 
EPEN  (N=8) 
50% (4/8) 
50% (4/8) 
50% (4/8) 
38% (3/8) 
0% (0/8) 
38% (3/8) 
EPIC  (N=7) 
71% (5/7) 
71% (5/7) 
71% (5/7) 
43% (3/7) 
29% (2/7) 
29% (2/7) 
NTPEN  (N=15) 
53% (8/15) 
53% (8/15) 
53% (8/15) 
47% (7/15) 
7% (1/15) 
47% (7/15) 
NWEIG  (N=9) 
89% (8/9) 
89% (8/9) 
89% (8/9) 
44% (4/9) 
11% (1/9) 
11% (1/9) 
ORENG  (N=7) 
43% (3/7) 
43% (3/7) 
43% (3/7) 
29% (2/7) 
0% (0/7) 
57% (4/7) 
PENNEC  (N=7) 
71% (5/7) 
71% (5/7) 
71% (5/7) 
43% (3/7) 
14% (1/7) 
14% (1/7) 
SETPEG  (N=6) 
83% (5/6) 
83% (5/6) 
83% (5/6) 
67% (4/6) 
0% (0/6) 
17% (1/6) 
SWEP  (N=5) 
20% (1/5) 
20% (1/5) 
20% (1/5) 
0% (0/5) 
0% (0/5) 
80% (4/5) 
SWIPE  (N=8) 
75% (6/8) 
75% (6/8) 
75% (6/8) 
50% (4/8) 
0% (0/8) 
25% (2/8) 
SWTPEG  (N=7) 
86% (6/7) 
86% (6/7) 
86% (6/7) 
71% (5/7) 
0% (0/7) 
14% (1/7) 
TEN  (N=5) 
60% (3/5) 
60% (3/5) 
40% (2/5) 
40% (2/5) 
0% (0/5) 
40% (2/5) 
WPNN  (N=7) 
83% (5/6) 
83% (5/6) 
83% (5/6) 
83% (5/6) 
0% (0/6) 
17% (1/6) 
YPEN  (N=9) 
56% (5/9) 
67% (6/9) 
67% (6/9) 
56% (5/9) 
0% (0/9) 
33% (3/9) 

 
56 
 
Table 40: Health Boards and Trusts that were 
facilitating mental health provision within epilepsy 
clinics. 
Country/network 
Yes 
No 
England and Wales 
(N=115) 
18% (21/115) 
82% (94/115) 
England  (N=109) 
19% (21/109) 
81% (88/109) 
Wales (N=6) 
0% (0/6) 
100% (6/6) 
 
 
 
BRPNF  (N=12) 
0% (0/12) 
100% (12/12) 
CEWT  (N=4) 
0% (0/4) 
100% (4/4) 
EPEN  (N=8) 
50% (4/8) 
50% (4/8) 
EPIC  (N=7) 
29% (2/7) 
71% (5/7) 
NTPEN  (N=15) 
20% (3/15) 
80% (12/15) 
NWEIG  (N=9) 
22% (2/9) 
78% (7/9) 
ORENG  (N=7) 
0% (0/7) 
100% (7/7) 
PENNEC  (N=7) 
14% (1/7) 
86% (6/7) 
SETPEG  (N=6) 
33% (2/6) 
67% (4/6) 
SWEP  (N=5) 
0% (0/5) 
100% (5/5) 
SWIPE  (N=8) 
29% (2/7) 
71% (5/7) 
SWTPEG  (N=7) 
0% (0/5) 
100% (5/5) 
TEN  (N=5) 
17% (1/6) 
83% (5/6) 
WPNN  (N=7) 
33% (3/9) 
67% (6/9) 
YPEN  (N=9) 
0% (0/12) 
100% (12/12) 
 
Table 41: Composition of mental health provision within epilepsy clinics. 
Country/network 
Epilepsy Clinics 
where mental health 
professionals can 
provide direct co-
located 
clinical care 
MDT meetings 
where 
epilepsy and mental 
health professionals 
discuss individual 
patients 
Other 
England and Wales 
(N=115) 
10% (12/115) 
15% (17/115) 
7% (8/115) 
England  (N=109) 
11% (12/109) 
16% (17/109) 
7% (8/109) 
Wales (N=6) 
0% (0/6) 
0% (0/6) 
0% (0/6) 
 
 
 
 
BRPNF  (N=12) 
0% (0/12) 
0% (0/12) 
0% (0/12) 
CEWT  (N=4) 
0% (0/4) 
0% (0/4) 
0% (0/4) 
EPEN  (N=8) 
25% (2/8) 
50% (4/8) 
12% (1/8) 
EPIC  (N=7) 
14% (1/7) 
14% (1/7) 
14% (1/7) 
NTPEN  (N=15) 
13% (2/15) 
13% (2/15) 
7% (1/15) 
NWEIG  (N=9) 
11% (1/9) 
11% (1/9) 
22% (2/9) 
ORENG  (N=7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
PENNEC  (N=7) 
14% (1/7) 
14% (1/7) 
0% (0/7) 
SETPEG  (N=6) 
33% (2/6) 
33% (2/6) 
17% (1/6) 
SWEP  (N=5) 
0% (0/5) 
0% (0/5) 
0% (0/5) 
SWIPE  (N=8) 
0% (0/8) 
12% (1/8) 
0% (0/8) 
SWTPEG  (N=7) 
29% (2/7) 
14% (1/7) 
14% (1/7) 
TEN  (N=5) 
0% (0/5) 
0% (0/5) 
0% (0/5) 
WPNN  (N=7) 
17% (1/6) 
17% (1/6) 
0% (0/6) 
YPEN  (N=9) 
0% (0/9) 
33% (3/9) 
11% (1/9) 
 
 

 
57 
 
Table 42: Health Boards and Trusts that had an action plan describing steps 
towards co-located mental health provision. 
Country/network 
Yes 
No 
England and Wales (N=94) 
12% (11/94) 
88% (83/94) 
England  (N=88) 
10% (9/88) 
90% (79/88) 
Wales (N=6) 
33% (2/6) 
67% (4/6) 
 
 
 
BRPNF  (N=12) 
17% (2/12) 
83% (10/12) 
CEWT  (N=4) 
25% (1/4) 
75% (3/4) 
EPEN  (N=5) 
20% (1/5) 
80% (4/5) 
EPIC  (N=12) 
8% (1/12) 
92% (11/12) 
NTPEN  (N=6) 
17% (1/6) 
83% (5/6) 
NWEIG  (N=4) 
25% (1/4) 
75% (3/4) 
ORENG  (N=5) 
20% (1/5) 
80% (4/5) 
PENNEC  (N=5) 
20% (1/5) 
80% (4/5) 
SETPEG  (N=5) 
20% (1/5) 
80% (4/5) 
SWEP  (N=6) 
17% (1/6) 
83% (5/6) 
SWIPE  (N=4) 
0% (0/4) 
100% (4/4) 
SWTPEG  (N=7) 
0% (0/7) 
100% (7/7) 
TEN  (N=7) 
0% (0/7) 
100% (7/7) 
WPNN  (N=7) 
0% (0/7) 
100% (7/7) 
YPEN  (N=5) 
0% (0/5) 
100% (5/5) 

 
58 
Table 43: Health Boards and Trusts that could refer to mental health services. 
Country/network 
Clinical 
psychology 
Psychiatric 
Educational 
psychology 
Neuropsychology 
Formal 
developmental 
None 
England and Wales 
(N=115) 
80% (92/115) 
90% (103/115) 
42% (48/115) 
53% (61/115) 
85% (98/115) 
6% (7/115) 
England  (N=109) 
80% (87/109) 
89% (97/109) 
40% (44/109) 
56% (61/109) 
84% (92/109) 
6% (7/109) 
Wales (N=6) 
83% (5/6) 
100% (6/6) 
67% (4/6) 
0% (0/6) 
100% (6/6) 
0% (0/6) 
 
 
 
 
 
 
 
BRPNF  (N=12) 
83% (10/12) 
92% (11/12) 
50% (6/12) 
42% (5/12) 
83% (10/12) 
8% (1/12) 
CEWT  (N=4) 
75% (3/4) 
75% (3/4) 
0% (0/4) 
75% (3/4) 
75% (3/4) 
25% (1/4) 
EPEN  (N=8) 
50% (4/8) 
88% (7/8) 
38% (3/8) 
25% (2/8) 
88% (7/8) 
12% (1/8) 
EPIC  (N=7) 
71% (5/7) 
86% (6/7) 
14% (1/7) 
57% (4/7) 
100% (7/7) 
0% (0/7) 
NTPEN  (N=15) 
87% (13/15) 
87% (13/15) 
27% (4/15) 
53% (8/15) 
93% (14/15) 
7% (1/15) 
NWEIG  (N=9) 
100% (9/9) 
89% (8/9) 
56% (5/9) 
67% (6/9) 
78% (7/9) 
0% (0/9) 
ORENG  (N=7) 
100% (7/7) 
100% (7/7) 
57% (4/7) 
71% (5/7) 
86% (6/7) 
0% (0/7) 
PENNEC  (N=7) 
100% (7/7) 
86% (6/7) 
71% (5/7) 
71% (5/7) 
86% (6/7) 
0% (0/7) 
SETPEG  (N=6) 
100% (6/6) 
100% (6/6) 
50% (3/6) 
83% (5/6) 
100% (6/6) 
0% (0/6) 
SWEP  (N=5) 
80% (4/5) 
100% (5/5) 
80% (4/5) 
0% (0/5) 
100% (5/5) 
0% (0/5) 
SWIPE  (N=8) 
100% (8/8) 
100% (8/8) 
62% (5/8) 
88% (7/8) 
88% (7/8) 
0% (0/8) 
SWTPEG  (N=7) 
29% (2/7) 
86% (6/7) 
14% (1/7) 
29% (2/7) 
71% (5/7) 
14% (1/7) 
TEN  (N=5) 
40% (2/5) 
40% (2/5) 
20% (1/5) 
40% (2/5) 
60% (3/5) 
40% (2/5) 
WPNN  (N=7) 
83% (5/6) 
100% (6/6) 
33% (2/6) 
33% (2/6) 
83% (5/6) 
0% (0/6) 
YPEN  (N=9) 
78% (7/9) 
100% (9/9) 
44% (4/9) 
56% (5/9) 
78% (7/9) 
0% (0/9) 

 
59 
Neurodevelopmental support 
In 13% (15/115) of Health Boards and Trusts, there was no agreed referral criteria for children and 
young people with neurodevelopmental conditions.  
Other the responses included: 
• 
Challenging behaviour associated with severe learning difficulties, 
• 
Cerebral Palsy,  
• 
Development delay,  
• 
Neuromuscular, 
• 
Early Health Assessment pathway, 
• 
Pathways are with separate Trust / Health Board, 
• 
Indirect referral pathway through other paediatric services, 
 
Figure 19:  Percentage of Health Boards and Trusts that had agreed referral criteria for children 
and young people with neuro-developmental conditions services in November 2019, November 
2020 and November 2021. 
13%
8%
56%
62%
60%
85%
80%
16%
6%
49%
56%
55%
81%
77%
13%
10%
63%
66%
65%
86%
81%
0%
20%
40%
60%
80%
100%
None
Other
Intellectual disability
Developmental cordination disorder
Behaviour difficulties
ASD
ADHD
Percentage of Trusts and Health Boards 
Round 3
Nov 2021
Round 3
Nov 2019
Round 3
Nov 2020

 
60 
Table 44: Health Boards and Trusts that had agreed referral criteria for children and young 
people with neuro-developmental conditions  
Country/network 
ADHD 
ASD 
Behaviour 
difficulties 
Developmental 
Coordination 
Disorder 
Intellectual 
disability 
Other 
None 
England and 
Wales (N=115) 
81% 
(93/115) 
86% 
(99/115) 
65% 
(75/115) 
66% (76/115) 
63% 
(73/115) 
10% 
(12/115) 
13% 
(15/115) 
England  
(N=109) 
81% 
(88/109) 
86% 
(94/109) 
65% 
(71/109) 
65% (71/109) 
62% 
(68/109) 
10% 
(11/109) 
13% 
(14/109) 
Wales (N=6) 
83% (5/6) 
83% (5/6) 
67% (4/6) 
83% (5/6) 
83% (5/6) 
17% (1/6) 
17% (1/6) 
 
 
 
 
 
 
 
 
BRPNF  (N=12) 
92% 
(11/12) 
100% 
(12/12) 
92% 
(11/12) 
100% (12/12) 
92% (11/12) 
0% 
(0/12) 
0% (0/12) 
CEWT  (N=4) 
100% (4/4) 
100% 
(4/4) 
100% 
(4/4) 
75% (3/4) 
100% (4/4) 
50% 
(2/4) 
0% (0/4) 
EPEN  (N=8) 
50% (4/8) 
62% (5/8) 
50% (4/8) 
38% (3/8) 
12% (1/8) 
12% (1/8) 
38% (3/8) 
EPIC  (N=7) 
86% (6/7) 
86% (6/7) 
86% (6/7) 
57% (4/7) 
71% (5/7) 
14% (1/7) 
14% (1/7) 
NTPEN  (N=15) 
67% 
(10/15) 
80% 
(12/15) 
60% 
(9/15) 
47% (7/15) 
53% (8/15) 
13% 
(2/15) 
20% 
(3/15) 
NWEIG  (N=9) 
100% 
(9/9) 
100% 
(9/9) 
89% (8/9) 
100% (9/9) 
100% 
(9/9) 
0% (0/9) 
11% (1/9) 
ORENG  (N=7) 
71% (5/7) 
86% (6/7) 
43% (3/7) 
43% (3/7) 
43% (3/7) 
0% (0/7) 
14% (1/7) 
PENNEC  (N=7) 
71% (5/7) 
71% (5/7) 
57% (4/7) 
57% (4/7) 
57% (4/7) 
14% (1/7) 
14% (1/7) 
SETPEG  (N=6) 
83% (5/6) 
100% 
(6/6) 
83% (5/6) 
83% (5/6) 
83% (5/6) 
0% (0/6) 
0% (0/6) 
SWEP  (N=5) 
80% (4/5) 
80% (4/5) 
60% (3/5) 
80% (4/5) 
80% (4/5) 
20% 
(1/5) 
20% (1/5) 
SWIPE  (N=8) 
88% (7/8) 
88% (7/8) 
50% (4/8) 
62% (5/8) 
62% (5/8) 
25% 
(2/8) 
0% (0/8) 
SWTPEG  (N=7) 
86% (6/7) 
86% (6/7) 
71% (5/7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
14% (1/7) 
TEN  (N=5) 
100% (5/5) 
100% 
(5/5) 
60% (3/5) 
100% (5/5) 
60% (3/5) 
0% (0/5) 
0% (0/5) 
WPNN  (N=7) 
67% (4/6) 
67% (4/6) 
50% (3/6) 
50% (3/6) 
50% (3/6) 
17% (1/6) 
33% (2/6) 
YPEN  (N=9) 
89% (8/9) 
89% (8/9) 
33% (3/9) 
67% (6/9) 
44% (4/9) 
11% (1/9) 
11% (1/9) 
 
 
 
 

 
61 
Care planning 
Comprehensive care planning for children and young people with epilepsy was reported to 
routinely take place in 89% (102/115) of Health Boards and Trusts, Table 45. 
Figure 20 shows the proportion of Health Boards and Trusts that routinely undertake/not 
undertake comprehensive care planning for children and young people with epilepsy in Round 3 
April 2018, November 2019, November 2020 and November 2021. 
 
Figure 20: Percentage Health Boards and Trusts that routinely undertake/not undertake 
comprehensive care planning for children and young people with epilepsy in Round 3 April 2018, 
November 2019, November 2020 and November 2021. 
 
 
 
 
 
 
77%
23%
80%
20%
90%
10%
89%
11%
0%
20%
40%
60%
80%
100%
Yes
No
Percentage of Trusts and Health Boards 
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Nov 2020
Round 3
Nov 2021

 
62 
 
Table 45: Health Boards and Trusts that routinely undertake comprehensive care planning for 
children and young people with epilepsy 
Country/network 
Yes 
No 
England and Wales (N=115) 
89% (102/115) 
11% (13/115) 
England  (N=109) 
90% (98/109) 
10% (11/109) 
Wales (N=6) 
67% (4/6) 
33% (2/6) 
 
 
 
BRPNF  (N=12) 
83% (10/12) 
17% (2/12) 
CEWT  (N=4) 
100% (4/4) 
0% (0/4) 
EPEN  (N=8) 
100% (8/8) 
0% (0/8) 
EPIC  (N=7) 
100% (7/7) 
0% (0/7) 
NTPEN  (N=15) 
87% (13/15) 
13% (2/15) 
NWEIG  (N=9) 
89% (8/9) 
11% (1/9) 
ORENG  (N=7) 
86% (6/7) 
14% (1/7) 
PENNEC  (N=7) 
71% (5/7) 
29% (2/7) 
SETPEG  (N=6) 
100% (6/6) 
0% (0/6) 
SWEP  (N=5) 
60% (3/5) 
40% (2/5) 
SWIPE  (N=8) 
75% (6/8) 
25% (2/8) 
SWTPEG  (N=7) 
86% (6/7) 
14% (1/7) 
TEN  (N=5) 
100% (5/5) 
0% (0/5) 
WPNN  (N=7) 
100% (6/6) 
0% (0/6) 
YPEN  (N=9) 
100% (9/9) 
0% (0/9) 
 
 
 
 

 
63 
 
Patient database or registry 
Over three-quarters of Health Boards and Trusts 77% (91/119), reported that they maintain a 
database or register for children and young people with epilepsies under their care (Table 46).  
Figure 21 shows the proportion of Health Boards and Trusts maintaining/not maintaining a 
database or register of children and young people with epilepsies, other than Epilepsy12 in Round 
3 April 2018, November 2019, November 2020 and November 2021. 
 
Figure 21:  Percentage of Health Boards and Trusts maintaining/not maintaining a database or 
register of children and young people with epilepsies, other than Epilepsy12 in Round 3 April 
2018, November 2019, November 2020 and November 2021. 
 
 
 
 
 
29%
39%
32%
34%
40%
27%
34%
42%
24%
36%
44%
20%
0%
20%
40%
60%
Yes, all
Yes, some
No
Percentage of Trusts and Health Boards 
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Nov 2020
Round 3
Nov 2021

 
64 
 
 
Table 46: Health Boards and Trusts maintaining a database or register of children and young 
people with epilepsies, other than Epilepsy12. 
Country/network 
Yes, all 
Yes, some 
No 
England and Wales 
(N=115) 
36% (41/115) 
44% (51/115) 
20% (23/115) 
England  (N=109) 
38% (41/109) 
43% (47/109) 
19% (21/109) 
Wales (N=6) 
0% (0/6) 
67% (4/6) 
33% (2/6) 
 
 
 
 
BRPNF  (N=12) 
17% (2/12) 
33% (4/12) 
50% (6/12) 
CEWT  (N=4) 
0% (0/4) 
75% (3/4) 
25% (1/4) 
EPEN  (N=8) 
38% (3/8) 
50% (4/8) 
12% (1/8) 
EPIC  (N=7) 
43% (3/7) 
29% (2/7) 
29% (2/7) 
NTPEN  (N=15) 
33% (5/15) 
47% (7/15) 
20% (3/15) 
NWEIG  (N=9) 
44% (4/9) 
56% (5/9) 
0% (0/9) 
ORENG  (N=7) 
29% (2/7) 
43% (3/7) 
29% (2/7) 
PENNEC  (N=7) 
57% (4/7) 
29% (2/7) 
14% (1/7) 
SETPEG  (N=6) 
50% (3/6) 
33% (2/6) 
17% (1/6) 
SWEP  (N=5) 
0% (0/5) 
60% (3/5) 
40% (2/5) 
SWIPE  (N=8) 
38% (3/8) 
38% (3/8) 
25% (2/8) 
SWTPEG  (N=7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
TEN  (N=5) 
40% (2/5) 
40% (2/5) 
20% (1/5) 
WPNN  (N=7) 
33% (2/6) 
67% (4/6) 
0% (0/6) 
YPEN  (N=9) 
44% (4/9) 
44% (4/9) 
11% (1/9) 

  
65 
Findings by OPEN UK regional 
networks 
 
% of Health Boards and Trusts employing a consultant paediatrician with expertise in 
epilepsy 
 
93%
99%
100%
100%
100%
100%
100%
100%
100%
100%
100%
100%
100%
100%
100%
100%
80%
100%
North Thames Paediatric Epilepsy Network
England and Wales combined
Children's Epilepsy Workstream in Trent
Birmingham Regional Paediatric Neurology Forum
Eastern Paediatric Epilepsy Network
Mersey and North Wales network 'Epilepsy In…
North West Children and Young People's Epilepsy…
Oxford region epilepsy interest group
Paediatric Epilepsy Network for the North East and…
South East Thames Paediatric Epilepsy Group
South Wales Epilepsy Forum
South West Interest Group Paediatric Epilepsy
South West Thames Paediatric Epilepsy Group
Trent Epilepsy Network
Wessex Paediatric Neurosciences Network
Yorkshire Paediatric Neurology Network

  
66 
% of Health Boards and Trusts that had a defined paediatric epilepsy clinical lead  
 
 
67%
71%
78%
80%
83%
91%
92%
93%
100%
100%
100%
100%
100%
100%
100%
100%
0%
20%
40%
60%
80%
100%
South East Thames Paediatric Epilepsy Group
Paediatric Epilepsy Network for the North East and…
Yorkshire Paediatric Neurology Network
South Wales Epilepsy Forum
Wessex Paediatric Neurosciences Network
England and Wales combined
Birmingham Regional Paediatric Neurology Forum
North Thames Paediatric Epilepsy Network
Children's Epilepsy Workstream in Trent
Eastern Paediatric Epilepsy Network
Mersey and North Wales network 'Epilepsy In…
North West Children and Young People's Epilepsy…
Oxford region epilepsy interest group
South West Interest Group Paediatric Epilepsy
South West Thames Paediatric Epilepsy Group
Trent Epilepsy Network

  
67 
% of Health Boards and Trusts who had some epilepsy specialist nurse (ESN) provision 
within their paediatric service 
 
67%
71%
75%
80%
83%
83%
86%
88%
89%
89%
100%
100%
100%
100%
100%
100%
0%
20%
40%
60%
80%
100%
Birmingham Regional Paediatric Neurology Forum
Oxford region epilepsy interest group
Children's Epilepsy Workstream in Trent
South Wales Epilepsy Forum
South East Thames Paediatric Epilepsy Group
Wessex Paediatric Neurosciences Network
Paediatric Epilepsy Network for the North East and…
Eastern Paediatric Epilepsy Network
England and Wales combined
North West Children and Young People's Epilepsy…
North Thames Paediatric Epilepsy Network
South West Interest Group Paediatric Epilepsy
Mersey and North Wales network 'Epilepsy In…
South West Thames Paediatric Epilepsy Group
Trent Epilepsy Network
Yorkshire Paediatric Neurology Network

  
68 
% of Health Boards Trusts that indicated that they could offer ESN support for rescue 
medication training for parents 
 
 
 
67%
67%
71%
75%
80%
83%
86%
87%
88%
89%
93%
100%
100%
100%
100%
100%
0%
20%
40%
60%
80%
100%
Birmingham Regional Paediatric Neurology Forum
Wessex Paediatric Neurosciences Network
Oxford region epilepsy interest group
Children's Epilepsy Workstream in Trent
South Wales Epilepsy Forum
South East Thames Paediatric Epilepsy Group
Paediatric Epilepsy Network for the North East and…
England and Wales combined
Eastern Paediatric Epilepsy Network
North West Children and Young People's Epilepsy…
North Thames Paediatric Epilepsy Network
South West Interest Group Paediatric Epilepsy
Mersey and North Wales network 'Epilepsy In…
South West Thames Paediatric Epilepsy Group
Trent Epilepsy Network
Yorkshire Paediatric Neurology Network

  
69 
% of Health Boards and Trusts that had a defined epilepsy clinic seeing patients at 
secondary level 
 
 
80%
83%
88%
88%
89%
89%
93%
93%
100%
100%
100%
100%
100%
100%
100%
100%
0%
20%
40%
60%
80%
100%
South Wales Epilepsy Forum
Birmingham Regional Paediatric Neurology Forum
South West Interest Group Paediatric Epilepsy
Eastern Paediatric Epilepsy Network
Yorkshire Paediatric Neurology Network
Wessex Paediatric Neurosciences Network
North Thames Paediatric Epilepsy Network
England and Wales combined
Children's Epilepsy Workstream in Trent
Mersey and North Wales network 'Epilepsy In…
North West Children and Young People's Epilepsy…
Oxford region epilepsy interest group
Paediatric Epilepsy Network for the North East and…
South East Thames Paediatric Epilepsy Group
South West Thames Paediatric Epilepsy Group
Trent Epilepsy Network

  
70 
% of Trusts in England that currently run Epilepsy Best Practice Criteria (BPC) clinics  
 
 
 
17%
22%
29%
33%
33%
33%
47%
50%
50%
56%
57%
62%
75%
80%
100%
0%
20%
40%
60%
80%
100%
120%
Mersey and North Wales network 'Epilepsy In…
North West Children and Young People's Epilepsy…
Oxford region epilepsy interest group
North Thames Paediatric Epilepsy Network
Birmingham Regional Paediatric Neurology Forum
South East Thames Paediatric Epilepsy Group
England only
Eastern Paediatric Epilepsy Network
Wessex Paediatric Neurosciences Network
Yorkshire Paediatric Neurology Network
Paediatric Epilepsy Network for the North East and…
South West Interest Group Paediatric Epilepsy
Children's Epilepsy Workstream in Trent
Trent Epilepsy Network
South West Thames Paediatric Epilepsy Group

  
71 
% of Health Boards and Trusts that have some tertiary provision within their paediatric 
service (paediatric neurologists who manage children with epilepsy (acutely and/or 
non-acutely)) 
 
 
 
 
 
 
 
 
 
 
 
 
12%
12%
14%
14%
14%
14%
17%
17%
17%
20%
20%
22%
25%
27%
33%
40%
0%
20%
40%
60%
80%
100%
Eastern Paediatric Epilepsy Network
South West Interest Group Paediatric Epilepsy
Mersey and North Wales network 'Epilepsy In…
Oxford region epilepsy interest group
South West Thames Paediatric Epilepsy Group
Paediatric Epilepsy Network for the North East and…
Birmingham Regional Paediatric Neurology Forum
Wessex Paediatric Neurosciences Network
South East Thames Paediatric Epilepsy Group
England and Wales combined
Trent Epilepsy Network
North West Children and Young People's Epilepsy…
Children's Epilepsy Workstream in Trent
North Thames Paediatric Epilepsy Network
Yorkshire Paediatric Neurology Network
South Wales Epilepsy Forum

  
72 
% of Health Boards and Trusts that had agreed referral pathways to tertiary paediatric 
neurology services  
  
60%
83%
86%
89%
89%
94%
100%
100%
100%
100%
100%
100%
100%
100%
100%
100%
0%
20%
40%
60%
80%
100%
South Wales Epilepsy Forum
Birmingham Regional Paediatric Neurology Forum
Paediatric Epilepsy Network for the North East and…
North West Children and Young People's Epilepsy…
Yorkshire Paediatric Neurology Network
England and Wales combined
Children's Epilepsy Workstream in Trent
Eastern Paediatric Epilepsy Network
Mersey and North Wales network 'Epilepsy In…
North Thames Paediatric Epilepsy Network
Oxford region epilepsy interest group
South East Thames Paediatric Epilepsy Group
South West Interest Group Paediatric Epilepsy
South West Thames Paediatric Epilepsy Group
Trent Epilepsy Network
Wessex Paediatric Neurosciences Network

  
73 
% of Health Boards and Trusts that were able to facilitate Vagal Nerve Stimulation (VNS) 
review at a location within the Health Board or Trust 
 
  
0%
0%
7%
14%
14%
17%
17%
22%
23%
25%
25%
29%
33%
50%
50%
80%
0%
20%
40%
60%
80%
100%
Yorkshire Paediatric Neurology Network
Wessex Paediatric Neurosciences Network
North Thames Paediatric Epilepsy Network
Mersey and North Wales network 'Epilepsy In…
Oxford region epilepsy interest group
South West Thames Paediatric Epilepsy Group
Birmingham Regional Paediatric Neurology Forum
Trent Epilepsy Network
England and Wales combined
Eastern Paediatric Epilepsy Network
Children's Epilepsy Workstream in Trent
Paediatric Epilepsy Network for the North East and…
North West Children and Young People's Epilepsy…
South West Interest Group Paediatric Epilepsy
South East Thames Paediatric Epilepsy Group
South Wales Epilepsy Forum

  
74 
% of Health Boards and Trusts that could provide specialist advice between scheduled 
reviews every weekday for 52 weeks per year 
 
 
 
29%
38%
40%
50%
50%
53%
57%
58%
60%
62%
75%
78%
78%
86%
86%
100%
0%
20%
40%
60%
80%
100%
South West Thames Paediatric Epilepsy Group
South West Interest Group Paediatric Epilepsy
Trent Epilepsy Network
South East Thames Paediatric Epilepsy Group
Wessex Paediatric Neurosciences Network
North Thames Paediatric Epilepsy Network
Paediatric Epilepsy Network for the North East and…
Birmingham Regional Paediatric Neurology Forum
South Wales Epilepsy Forum
England and Wales combined
Eastern Paediatric Epilepsy Network
Yorkshire Paediatric Neurology Network
North West Children and Young People's Epilepsy…
Oxford region epilepsy interest group
Mersey and North Wales network 'Epilepsy In…
Children's Epilepsy Workstream in Trent

  
75 
% of Health Boards and Trusts that have evidence of a clear point of contact for non-
paediatric professionals seeking paediatric epilepsy support.  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
50%
67%
71%
75%
80%
80%
84%
86%
88%
89%
89%
89%
93%
100%
100%
100%
0%
20%
40%
60%
80%
100%
Wessex Paediatric Neurosciences Network
Birmingham Regional Paediatric Neurology Forum
Paediatric Epilepsy Network for the North East and…
Children's Epilepsy Workstream in Trent
Trent Epilepsy Network
South Wales Epilepsy Forum
England and Wales combined
Mersey and North Wales network 'Epilepsy In…
South West Interest Group Paediatric Epilepsy
Oxford region epilepsy interest group
Yorkshire Paediatric Neurology Network
North West Children and Young People's Epilepsy…
North Thames Paediatric Epilepsy Network
Eastern Paediatric Epilepsy Network
South East Thames Paediatric Epilepsy Group
South West Thames Paediatric Epilepsy Group

  
76 
% of Health Boards and Trusts that have agreed referral pathway to adult services.  
 
 
  
 
57%
75%
80%
83%
86%
86%
87%
87%
88%
88%
89%
100%
100%
100%
100%
100%
0%
20%
40%
60%
80%
100%
Paediatric Epilepsy Network for the North East and…
Birmingham Regional Paediatric Neurology Forum
Trent Epilepsy Network
Wessex Paediatric Neurosciences Network
Oxford region epilepsy interest group
Mersey and North Wales network 'Epilepsy In…
North Thames Paediatric Epilepsy Network
England and Wales combined
South West Interest Group Paediatric Epilepsy
Eastern Paediatric Epilepsy Network
North West Children and Young People's Epilepsy…
South East Thames Paediatric Epilepsy Group
Children's Epilepsy Workstream in Trent
South Wales Epilepsy Forum
South West Thames Paediatric Epilepsy Group
Yorkshire Paediatric Neurology Network

  
77 
% of Health Boards and Trusts that have an outpatient clinic specifically for young 
people with epilepsies 
 
 
 
 
 
 
 
 
 
 
 
 
14%
20%
22%
29%
29%
33%
40%
40%
43%
50%
50%
50%
56%
71%
75%
75%
0%
20%
40%
60%
80%
100%
Paediatric Epilepsy Network for the North East and…
Trent Epilepsy Network
Yorkshire Paediatric Neurology Network
Mersey and North Wales network 'Epilepsy In…
Oxford region epilepsy interest group
Birmingham Regional Paediatric Neurology Forum
North Thames Paediatric Epilepsy Network
South Wales Epilepsy Forum
England and Wales combined
South West Interest Group Paediatric Epilepsy
Wessex Paediatric Neurosciences Network
South East Thames Paediatric Epilepsy Group
North West Children and Young People's Epilepsy…
South West Thames Paediatric Epilepsy Group
Children's Epilepsy Workstream in Trent
Eastern Paediatric Epilepsy Network

  
78 
% of Health Boards and Trusts that have an outpatient epilepsy service involving adult 
and paediatric professionals  
 
 
 
 
 
 
 
 
 
 
 
 
0%
29%
50%
60%
65%
67%
67%
67%
67%
67%
71%
71%
75%
80%
88%
100%
0%
20%
40%
60%
80%
100%
Trent Epilepsy Network
Paediatric Epilepsy Network for the North East and…
Children's Epilepsy Workstream in Trent
North Thames Paediatric Epilepsy Network
England and Wales combined
South East Thames Paediatric Epilepsy Group
Birmingham Regional Paediatric Neurology Forum
Yorkshire Paediatric Neurology Network
North West Children and Young People's Epilepsy…
Wessex Paediatric Neurosciences Network
Mersey and North Wales network 'Epilepsy In…
Oxford region epilepsy interest group
Eastern Paediatric Epilepsy Network
South Wales Epilepsy Forum
South West Interest Group Paediatric Epilepsy
South West Thames Paediatric Epilepsy Group

  
79 
% of Health Boards and Trusts that have structured resources to support Young People 
transition 
 
 
 
 
 
 
 
 
20%
25%
29%
42%
50%
50%
57%
60%
60%
62%
71%
71%
78%
88%
89%
100%
0%
20%
40%
60%
80%
100%
South Wales Epilepsy Forum
Children's Epilepsy Workstream in Trent
Mersey and North Wales network 'Epilepsy In…
Birmingham Regional Paediatric Neurology Forum
South East Thames Paediatric Epilepsy Group
Wessex Paediatric Neurosciences Network
Oxford region epilepsy interest group
North Thames Paediatric Epilepsy Network
Trent Epilepsy Network
England and Wales combined
Paediatric Epilepsy Network for the North East and…
South West Thames Paediatric Epilepsy Group
Yorkshire Paediatric Neurology Network
Eastern Paediatric Epilepsy Network
North West Children and Young People's Epilepsy…
South West Interest Group Paediatric Epilepsy

  
80 
% of Health Boards and Trusts that facilitate mental health provision within epilepsy 
clinics 
 
 
 
0%
0%
0%
0%
0%
0%
14%
17%
18%
20%
22%
29%
29%
33%
33%
50%
0%
20%
40%
60%
80%
100%
South Wales Epilepsy Forum
Children's Epilepsy Workstream in Trent
Yorkshire Paediatric Neurology Network
Oxford region epilepsy interest group
Birmingham Regional Paediatric Neurology Forum
South West Thames Paediatric Epilepsy Group
Paediatric Epilepsy Network for the North East and…
Trent Epilepsy Network
England and Wales combined
North Thames Paediatric Epilepsy Network
North West Children and Young People's Epilepsy…
Mersey and North Wales network 'Epilepsy In…
South West Interest Group Paediatric Epilepsy
South East Thames Paediatric Epilepsy Group
Wessex Paediatric Neurosciences Network
Eastern Paediatric Epilepsy Network

  
81 
% of Health Boards and Trusts that routinely undertook comprehensive care planning for 
children with epilepsy 
 
 
 
 
 
 
 
 
 
 
 
60%
71%
75%
83%
86%
86%
87%
89%
89%
100%
100%
100%
100%
100%
100%
100%
0%
20%
40%
60%
80%
100%
South Wales Epilepsy Forum
Paediatric Epilepsy Network for the North East and…
South West Interest Group Paediatric Epilepsy
Birmingham Regional Paediatric Neurology Forum
Oxford region epilepsy interest group
South West Thames Paediatric Epilepsy Group
North Thames Paediatric Epilepsy Network
England and Wales combined
North West Children and Young People's Epilepsy…
Eastern Paediatric Epilepsy Network
Children's Epilepsy Workstream in Trent
Mersey and North Wales network 'Epilepsy In…
South East Thames Paediatric Epilepsy Group
Trent Epilepsy Network
Wessex Paediatric Neurosciences Network
Yorkshire Paediatric Neurology Network

  
82 
% of Health Boards and Trusts that maintain a database or register for all the children 
with epilepsies 
 
 
 
 
 
 
 
 
 
0%
0%
17%
29%
33%
33%
36%
38%
40%
43%
44%
44%
50%
57%
57%
57%
0%
20%
40%
60%
80%
100%
Children's Epilepsy Workstream in Trent
South Wales Epilepsy Forum
Birmingham Regional Paediatric Neurology Forum
Oxford region epilepsy interest group
North Thames Paediatric Epilepsy Network
Wessex Paediatric Neurosciences Network
England and Wales combined
Eastern Paediatric Epilepsy Network
Trent Epilepsy Network
Mersey and North Wales network 'Epilepsy In…
Yorkshire Paediatric Neurology Network
North West Children and Young People's Epilepsy…
South East Thames Paediatric Epilepsy Group
South West Interest Group Paediatric Epilepsy
Paediatric Epilepsy Network for the North East and…
South West Thames Paediatric Epilepsy Group