Appendix A: Epilepsy12 Organisational audit report 2020
Source: data.gov.uk (2023-03-28)

Epilepsy12 2021 National organisational and clinical audits - combined report on 2020 data. This is a combined report of the organisational and clinical audits for Round 3 Cohort 2, published in 2021. 

Epilepsy12, the UK collaborative clinical audit of health care for children and young people with suspected epileptic seizures is a national clinical audit delivered by the Royal College of Paediatrics and Child Health. It is commissioned by the Healthcare Quality Improvement Partnership (HQIP) and funded by NHS England and the Welsh Government. Round 3 began on 1 April 2017 as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP).

The results are of the organisation of paediatric epilepsy services for children and young people in England and Wales as described at November 2020, and the standard of clinical care provided by services that focuses on patients in ‘cohort 2’. This is children and young people who had a first paediatric assessment for a ‘paroxysmal episode’ (or episodes) between 1 December 2018 and 30 November 2019. 

These data should not be interpreted without referring to the combined reports summary and Appendices A&G that contain the reports' full results. which is available at: https://www.rcpch.ac.uk/resources/epilepsy12-national-organisational-audit-clinical-audit-2021

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

Appendix A: Epilepsy12 Round 3 2020 organisational audit  

 2 
Epilepsy12  
National Clinical Audit of Seizures and Epilepsies for Children and Young People  
Combined organisational and clinical audits: Report for England and Wales, Round 3 Cohort 3 
(2019-20). 
The Healthcare Quality Improvement Partnership (HQIP) is led by a consortium of the Academy 
of Medical Royal Colleges, the Royal College of Nursing and National Voices. Its aim is to promote 
quality improvement in patient outcomes, and in particular, to increase the impact that clinical 
audit, outcome review programmes and registries have on healthcare quality in England and 
Wales. HQIP holds the contract to commission, manage and develop the National Clinical Audit 
and Patient Outcomes Programme (NCAPOP), comprising around 40 projects covering care 
provided to people with a wide range of medical, surgical and mental health conditions. The 
programme is funded by NHS England, the Welsh Government and, with some individual projects, 
other devolved administrations and crown dependencies.  
www.hqip.org.uk/national-programmes 
© 2021 Healthcare Quality Improvement Partnership (HQIP) 
Published by RCPCH  2021.  
The Royal College of Paediatrics and Child Health is a registered charity in England and Wales (1057744) and in Scotland (SCO38299).  

 3 
Appendices 
The Epilepsy12 combined report for 2020 includes key findings, recommendations, quality 
improvement activities, and patient involvement in Epilepsy12. It is available to download from 
Epilepsy12. 
This appendix presents organisational data describing the services as they were in November 
2020. At this time the NHS were dealing with a significant surge in COVID-19 cases and 
hospitalisations in both England and Wales.   
Appendix B: Full Epilepsy12 clinical audit results for Round 3, Cohort 2 includes the publication of 
the clinical performance results and outcomes captured from Health Boards and Trusts in England 
and Wales. It is available to download from Epilepsy12. 
Appendix A: Epilepsy12 Round 3 2020 Organisational audit 
Epilepsy12 Round 3 2020 Organisational audit results: 
4 
Participation   
5 
Workforce  
6 
Clinic configuration   
16 
Tertiary provision  
22 
Investigations  
29 
Service contact  
35 
Transition  
43 
Mental health  
52 
Neurodevelopmental support 
62 
Care planning  
64 
Patient database or registry   
66 
Findings by OPEN UK regional networks  
68 
List of organisational data figures & tables 
86 
Data completeness  
92 

 4 
Appendix A: Epilepsy12 Round 3 2020 
Organisational audit results 
In this section, we present the full tables of results and figures, attributed by England and Wales 
combined, England, Wales and by each OPEN UK regional network, for each of the Epilepsy12 
Round 3 Organisational audit measures. 
 
For individual Health Board or Trust level results, please go to the Epilepsy12 website 
(www.rcpch.ac.uk/epilepsy12). 
 
The 16 OPEN UK Regional Paediatric Epilepsy Networks are named in the following table. The 
abbreviated regional network names appear in the regional network results of both the clinical 
and organisational audits in this report.  
OPEN UK Regional 
Paediatric Epilepsy 
Network  
Regional Network full name  
BRPNF  
Birmingham Regional Paediatric Neurology Forum  
CEWT  
Children's Epilepsy Workstream in Trent  
EPEN  
Eastern Paediatric Epilepsy Network  
EPIC  
Mersey and North Wales network 'Epilepsy in Childhood' interest 
group  
NTPEN  
North Thames Paediatric Epilepsy Network  
NWEIG  
North West Children and Young People's Epilepsy Interest Group  
NI  
Northern Ireland epilepsy services  
ORENG  
Oxford Region Epilepsy Interest Group  
PENNEC  
Paediatric Epilepsy Network for the North East and Cumbria  
SETPEG  
South East Thames Paediatric Epilepsy Group  
SPEN  
Scottish Paediatric Epilepsy Network  
SWEP  
South Wales Epilepsy Forum  
SWIPE  
South West Interest Group Paediatric Epilepsy  
SWTPEG  
South West Thames Paediatric Epilepsy Group  
TEN  
Trent Epilepsy Network  
WPNN  
Wessex Paediatric Neurosciences Network  
YPEN  
Yorkshire Paediatric Neurology Network  
  
 

 5 
Participation 
Table 1 provides a breakdown of Epilepsy12 Round 3, 2020 Organisational audit participation by 
Paediatric Epilepsy Networks and by country. 
•
119 out of 145 (82%) registered Health Boards and Trusts (T/HBs) submitted and locked
November 2020 Organisational audit data.
•
94% (136/145) and 100% (148/148) of registered Health Boards and Trusts submitted and
locked 2019 and 2018 Organisational audit data respectively.
Table 1: Epilepsy12 Round 3 2020 Organisational Audit participation by paediatric epilepsy 
networks and by country. 
Country/network 
Number of registered T/HBs 
Number of T/HBs that have 
submitted and locked their 
2020 organisational audit data 
England and Wales 
145 
82% (119/145) 
England 
139 
83% (115/139) 
Wales 
6 
67% (4/6) 
BRPNF 
14 
71% (10/14) 
CEWT 
6 
83% (5/6) 
EPEN 
14 
93% (13/14) 
EPIC 
9 
89% (8/9) 
NTPEN 
17 
88% (15/17) 
NWEIG 
12 
58% (7/12) 
ORENG 
7 
100% (7/7) 
PENNEC 
8 
100% (8/8) 
SETPEG 
10 
70% (7/10) 
SWEP 
5 
60% (3/5) 
SWIPE 
11 
82% (9/11) 
SWTPEG 
8 
75% (6/8) 
TEN 
6 
100% (6/6) 
WPNN 
9 
78% (7/9) 
YPEN 
9 
89% (8/9) 

 6 
Workforce 
Consultant paediatrician 
 
Table 2 shows that the total whole time equivalent (WTE) for general paediatric consultants 
employed across England and Wales was 1902.3. There were a total of 268.7 whole time equivalent 
(WTE) paediatric consultants with 'expertise in epilepsy' employed across England and Wales and 
is equivalent to 14% (268.7/1902.3) of the total reported WTE general paediatric (consultant or 
associate specialist) workforce, (Table 3). 97% (116/119) of Health Boards and Trusts did employ a 
consultant paediatrician with 'expertise in epilepsy', this ranged from 0.5 WTE to 10.5 WTE, (Table 
4). In 7% (8/119) 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 and Round 3 November 2020.  
 
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 
and Round 3 November 2020. 
1.8
1.8
2.1
2.3
2.3
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
Mean  Whole Time Equivalent (WTE) 

 7 
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=119) 
1902.3 
16.0 
England (N=115) 
1800.1 
15.7 
Wales (N=4) 
102.2 
25.6 
 
 
 
BRPNF  (N=10) 
127.1 
12.7 
CEWT  (N=5) 
108.7 
21.7 
EPEN  (N=13) 
188.9 
14.5 
EPIC  (N=8) 
108.6 
13.6 
NTPEN  (N=15) 
264.8 
17.7 
NWEIG  (N=7) 
116.0 
16.6 
ORENG  (N=7) 
114.1 
16.3 
PENNEC  (N=8) 
147.0 
18.4 
SETPEG  (N=7) 
112.9 
16.1 
SWEP  (N=3) 
71.2 
23.7 
SWIPE  (N=9) 
133.3 
14.8 
SWTPEG  (N=6) 
118.9 
19.8 
TEN  (N=6) 
79.2 
13.2 
WPNN  (N=7) 
82.7 
11.8 
YPEN  (N=8) 
129.0 
16.1 
 
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=119) 
268.7 
2.3 
0.0 
10.5 
14% (268.7/1902.3) 
England (N=115) 
252.7 
2.2 
0.0 
10.5 
14% (252.7/1800.1) 
Wales (N=4) 
16.0 
4.0 
2.0 
9.0 
16% (16.0/102.2) 
 
 
 
 
 
 
BRPNF  (N=10) 
19.1 
1.9 
0.5 
7.4 
15% (19.1/127.1) 
CEWT  (N=5) 
12.9 
2.6 
0.0 
7.0 
12% (12.9/108.7) 
EPEN  (N=13) 
23.8 
1.8 
0.6 
4.0 
13% (23.8/188.9) 
EPIC  (N=8) 
24.5 
3.1 
1.0 
9.0 
23% (24.5/108.6) 
NTPEN  (N=15) 
31.9 
2.1 
0.0 
6.2 
12% (31.9/264.8) 
NWEIG  (N=7) 
11.2 
1.6 
0.9 
3.0 
10% (11.2/116.0) 
ORENG  (N=7) 
15.5 
2.2 
1.0 
5.0 
14% (15.5/114.1) 
PENNEC  (N=8) 
28.6 
3.6 
1.0 
9.0 
19% (28.6/147.0) 
SETPEG  (N=7) 
14.4 
2.1 
1.0 
3.9 
13% (14.4/112.9) 
SWEP  (N=3) 
7.0 
2.3 
2.0 
3.0 
10% (7.0/71.2) 
SWIPE  (N=9) 
17.2 
1.9 
0.8 
4.0 
13% (17.2/133.3) 
SWTPEG  (N=6) 
12.1 
2.0 
1.0 
2.8 
10% (12.1/118.9) 
TEN  (N=6) 
12.8 
2.1 
1.0 
3.0 
16% (12.8/79.2) 
WPNN  (N=7) 
15.0 
2.1 
1.1 
3.8 
18% (15.0/82.7) 
YPEN  (N=8) 
22.8 
2.8 
1.0 
10.5 
18% (22.8/129.0) 
 

 8 
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=119) 
97% (116/119) 
3% (3/119) 
0.5 - 10.5 
England  (N=115) 
97% (112/115) 
3% (3/115) 
0.5 - 10.5 
Wales (N=4) 
100% (4/4) 
0% (0/4) 
2.0 - 9.0 
 
 
 
 
BRPNF  (N=10) 
100% (10/10) 
0% (0/10) 
0.5 - 7.4 
CEWT  (N=5) 
80% (4/5) 
20% (1/5) 
1.0 - 7.0 
EPEN  (N=13) 
100% (13/13) 
0% (0/13) 
0.6 - 4.0 
EPIC  (N=8) 
100% (8/8) 
0% (0/8) 
1.0 - 9.0 
NTPEN  (N=15) 
87% (13/15) 
13% (2/15) 
1.0 - 6.2 
NWEIG  (N=7) 
100% (7/7) 
0% (0/7) 
0.9 - 3.0 
ORENG  (N=7) 
100% (7/7) 
0% (0/7) 
1.0 - 5.0 
PENNEC  (N=8) 
100% (8/8) 
0% (0/8) 
1.0 - 9.0 
SETPEG  (N=7) 
100% (7/7) 
0% (0/7) 
1.0 - 3.9 
SWEP  (N=3) 
100% (3/3) 
0% (0/3) 
2.0 - 3.0 
SWIPE  (N=9) 
100% (9/9) 
0% (0/9) 
0.8 - 4.0 
SWTPEG  (N=6) 
100% (6/6) 
0% (0/6) 
1.0 - 2.8 
TEN  (N=6) 
100% (6/6) 
0% (0/6) 
1.0 - 3.0 
WPNN  (N=7) 
100% (7/7) 
0% (0/7) 
1.1 - 3.8 
YPEN  (N=8) 
100% (8/8) 
0% (0/8) 
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=119) 
93% (111/119) 
7% (8/119) 
England  (N=115) 
93% (107/115) 
7% (8/115) 
Wales (N=4) 
100% (4/4) 
0% (0/4) 
 
 
 
BRPNF  (N=10) 
90% (9/10) 
10% (1/10) 
CEWT  (N=5) 
100% (5/5) 
0% (0/5) 
EPEN  (N=13) 
100% (13/13) 
0% (0/13) 
EPIC  (N=8) 
100% (8/8) 
0% (0/8) 
NTPEN  (N=15) 
87% (13/15) 
13% (2/15) 
NWEIG  (N=7) 
100% (7/7) 
0% (0/7) 
ORENG  (N=7) 
100% (7/7) 
0% (0/7) 
PENNEC  (N=8) 
88% (7/8) 
13% (1/8) 
SETPEG  (N=7) 
71% (5/7) 
29% (2/7) 
SWEP  (N=3) 
100% (3/3) 
0% (0/3) 
SWIPE  (N=9) 
100% (9/9) 
0% (0/9) 
SWTPEG  (N=6) 
100% (6/6) 
0% (0/6) 
TEN  (N=6) 
100% (6/6) 
0% (0/6) 
WPNN  (N=7) 
100% (7/7) 
0% (0/7) 
YPEN  (N=8) 
75% (6/8) 
25% (2/8) 

 
9 
Epilepsy specialist nurse 
 
There was a total of 151.6 WTE epilepsy specialist nurses (ESN) reported to be employed 
across England and Wales (Table 6). 89% (106/119) 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 0.2 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, April 2018, Round 2, November 2019 and 
Round 3, November 2020. 
 
 
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 and November 2020. 
0.5
0.6
1.0
1.2
1.3
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
Mean  Whole Time Equivalent (WTE) 

 
10 
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 and Trusts indicated that they could offer ESN support for: rescue 
medication training for parents (104/119), school meetings (102/119), individual healthcare plan 
facilitation (99/119) or ward visits (101/119). 18% (21/119) 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 and November 2020. 
18%
37%
50%
68%
71%
76%
83%
85%
86%
87%
17%
34%
46%
56%
68%
68%
77%
77%
78%
80%
14%
32%
42%
51%
63%
65%
70%
71%
72%
75%
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
Apr 2018
Round 3
Nov 2019
Round 3
Nov 2020

 
11 
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=119) 
151.6 
1.3 
0.0 
4.8 
England  (N=115) 
144.2 
1.3 
0.0 
4.8 
Wales (N=4) 
7.4 
1.9 
0.0 
3.0 
 
 
 
 
 
BRPNF  (N=10) 
5.7 
0.6 
0.0 
1.2 
CEWT  (N=5) 
6.8 
1.4 
0.0 
2.0 
EPEN  (N=13) 
15.8 
1.2 
0.0 
2.4 
EPIC  (N=8) 
13.2 
1.7 
0.6 
3.8 
NTPEN  (N=15) 
18.7 
1.2 
0.0 
3.7 
NWEIG  (N=7) 
10.3 
1.5 
1.0 
2.6 
ORENG  (N=7) 
4.6 
0.7 
0.0 
1.0 
PENNEC  (N=8) 
10.1 
1.3 
0.0 
2.3 
SETPEG  (N=7) 
10.1 
1.4 
0.3 
2.5 
SWEP  (N=3) 
5.0 
1.7 
0.0 
3.0 
SWIPE  (N=9) 
10.9 
1.2 
0.0 
2.0 
SWTPEG  (N=6) 
6.6 
1.1 
0.8 
1.6 
TEN  (N=6) 
12.0 
2.0 
1.0 
4.0 
WPNN  (N=7) 
8.4 
1.2 
0.2 
2.1 
YPEN  (N=8) 
13.4 
1.7 
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=119) 
89% (106/119) 
11% (13/119) 
0.2 - 4.8 
England  (N=115) 
90% (103/115) 
10% (12/115) 
0.2 - 4.8 
Wales (N=4) 
75% (3/4) 
25% (1/4) 
0.2 - 3.0 
 
 
 
 
BRPNF  (N=10) 
70% (7/10) 
30% (3/10) 
0.5 - 1.2 
CEWT  (N=5) 
80% (4/5) 
20% (1/5) 
1.0 - 2.0 
EPEN  (N=13) 
92% (12/13) 
8% (1/13) 
0.5 - 2.4 
EPIC  (N=8) 
100% (8/8) 
0% (0/8) 
0.6 - 3.8 
NTPEN  (N=15) 
87% (13/15) 
13% (2/15) 
0.4 - 3.7 
NWEIG  (N=7) 
100% (7/7) 
0% (0/7) 
1.0 - 2.6 
ORENG  (N=7) 
71% (5/7) 
29% (2/7) 
0.6 - 1.0 
PENNEC  (N=8) 
75% (6/8) 
25% (2/8) 
1.0 - 2.3 
SETPEG  (N=7) 
100% (7/7) 
0% (0/7) 
0.3 - 2.5 
SWEP  (N=3) 
67% (2/3) 
33% (1/3) 
2.0 - 3.0 
SWIPE  (N=9) 
89% (8/9) 
11% (1/9) 
0.3 - 2.0 
SWTPEG  (N=6) 
100% (6/6) 
0% (0/6) 
0.8 - 1.6 
TEN  (N=6) 
100% (6/6) 
0% (0/6) 
1.0 - 4.0 
WPNN  (N=7) 
100% (7/7) 
0% (0/7) 
0.2 - 2.1 
YPEN  (N=8) 
100% (8/8) 
0% (0/8) 
0.6 - 4.8 
  

 
12 
Table 8: Health Boards and Trusts that could support epilepsy nurse functions (n=119). 
 
Country/network 
Home visits 
Nurse led clinics 
Emergency    
department visits 
Ward visits 
Nurse prescribing School meetings 
England and Wales 
(N=119) 
71% (84/119) 
68% (81/119) 
50% (60/119) 
85% (101/119) 
37% (44/119) 
86% (102/119) 
England  (N=115) 
70% (81/115) 
68% (78/115) 
52% (60/115) 
85% (98/115) 
37% (43/115) 
86% (99/115) 
Wales (N=4) 
75% (3/4) 
75% (3/4) 
0% (0/4) 
75% (3/4) 
25% (1/4) 
75% (3/4) 
 
 
 
 
 
 
 
BRPNF  (N=10) 
40% (4/10) 
40% (4/10) 
30% (3/10) 
70% (7/10) 
30% (3/10) 
70% (7/10) 
CEWT  (N=5) 
40% (2/5) 
80% (4/5) 
60% (3/5) 
80% (4/5) 
40% (2/5) 
60% (3/5) 
EPEN  (N=13) 
54% (7/13) 
69% (9/13) 
77% (10/13) 
85% (11/13) 
15% (2/13) 
85% (11/13) 
EPIC  (N=8) 
100% (8/8) 
63% (5/8) 
63% (5/8) 
100% (8/8) 
75% (6/8) 
100% (8/8) 
NTPEN  (N=15) 
67% (10/15) 
60% (9/15) 
53% (8/15) 
87% (13/15) 
20% (3/15) 
80% (12/15) 
NWEIG  (N=7) 
100% (7/7) 
71% (5/7) 
14% (1/7) 
100% (7/7) 
86% (6/7) 
100% (7/7) 
ORENG  (N=7) 
71% (5/7) 
57% (4/7) 
57% (4/7) 
71% (5/7) 
14% (1/7) 
71% (5/7) 
PENNEC  (N=8) 
75% (6/8) 
63% (5/8) 
50% (4/8) 
63% (5/8) 
63% (5/8) 
75% (6/8) 
SETPEG  (N=7) 
71% (5/7) 
100% (7/7) 
71% (5/7) 
71% (5/7) 
0% (0/7) 
100% (7/7) 
SWEP  (N=3) 
67% (2/3) 
67% (2/3) 
0% (0/3) 
67% (2/3) 
0% (0/3) 
67% (2/3) 
SWIPE  (N=9) 
67% (6/9) 
67% (6/9) 
67% (6/9) 
89% (8/9) 
56% (5/9) 
89% (8/9) 
SWTPEG  (N=6) 
67% (4/6) 
83% (5/6) 
50% (3/6) 
100% (6/6) 
33% (2/6) 
83% (5/6) 
TEN  (N=6) 
100% (6/6) 
83% (5/6) 
67% (4/6) 
100% (6/6) 
50% (3/6) 
100% (6/6) 
WPNN  (N=7) 
86% (6/7) 
71% (5/7) 
29% (2/7) 
100% (7/7) 
43% (3/7) 
100% (7/7) 
YPEN  (N=8) 
75% (6/8) 
75% (6/8) 
25% (2/8) 
88% (7/8) 
38% (3/8) 
100% (8/8) 

 
13 
 
Table 8 (continued): Health Boards and Trusts that could support epilepsy nurse functions (n=119). 
Country/network 
Individual HCP facilitation 
Rescue medication 
training parents 
Rescue medication 
training schools 
Supporting all 9 functions 
England and Wales (N=119) 
83% (99/119) 
87% (104/119) 
76% (90/119) 
18% (21/119) 
England  (N=115) 
83% (96/115) 
88% (101/115) 
76% (87/115) 
18% (21/115) 
Wales (N=4) 
75% (3/4) 
75% (3/4) 
75% (3/4) 
0% (0/4) 
 
 
 
 
 
BRPNF  (N=10) 
70% (7/10) 
70% (7/10) 
50% (5/10) 
10% (1/10) 
CEWT  (N=5) 
80% (4/5) 
80% (4/5) 
60% (3/5) 
20% (1/5) 
EPEN  (N=13) 
92% (12/13) 
92% (12/13) 
54% (7/13) 
8% (1/13) 
EPIC  (N=8) 
100% (8/8) 
100% (8/8) 
100% (8/8) 
38% (3/8) 
NTPEN  (N=15) 
73% (11/15) 
80% (12/15) 
67% (10/15) 
0% (0/15) 
NWEIG  (N=7) 
100% (7/7) 
100% (7/7) 
100% (7/7) 
14% (1/7) 
ORENG  (N=7) 
71% (5/7) 
71% (5/7) 
57% (4/7) 
0% (0/7) 
PENNEC  (N=8) 
75% (6/8) 
75% (6/8) 
75% (6/8) 
50% (4/8) 
SETPEG  (N=7) 
100% (7/7) 
100% (7/7) 
100% (7/7) 
0% (0/7) 
SWEP  (N=3) 
67% (2/3) 
67% (2/3) 
67% (2/3) 
0% (0/3) 
SWIPE  (N=9) 
78% (7/9) 
89% (8/9) 
89% (8/9) 
33% (3/9) 
SWTPEG  (N=6) 
100% (6/6) 
100% (6/6) 
100% (6/6) 
33% (2/6) 
TEN  (N=6) 
83% (5/6) 
100% (6/6) 
100% (6/6) 
33% (2/6) 
WPNN  (N=7) 
86% (6/7) 
86% (6/7) 
43% (3/7) 
14% (1/7) 
YPEN  (N=8) 
75% (6/8) 
100% (8/8) 
100% (8/8) 
25% (2/8) 
 

 
14 
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 (n=106). 
 
 
 
 
Country/network 
Home visits 
Nurse led clinics 
Emergency 
department 
visits 
Ward visits 
Nurse 
prescribing 
School 
meetings 
England and Wales 
(N=106) 
79% (84/106) 
76% (81/106) 
57% (60/106) 
95% (101/106) 
42% (44/106) 
96% (102/106) 
England  (N=103) 
79% (81/103) 
76% (78/103) 
58% (60/103) 
95% (98/103) 
42% (43/103) 
96% (99/103) 
Wales (N=3) 
100% (3/3) 
100% (3/3) 
0% (0/3) 
100% (3/3) 
33% (1/3) 
100% (3/3) 
 
 
 
 
 
 
 
BRPNF  (N=7) 
57% (4/7) 
57% (4/7) 
43% (3/7) 
100% (7/7) 
43% (3/7) 
100% (7/7) 
CEWT  (N=4) 
50% (2/4) 
100% (4/4) 
75% (3/4) 
100% (4/4) 
50% (2/4) 
75% (3/4) 
EPEN  (N=12) 
58% (7/12) 
75% (9/12) 
83% (10/12) 
92% (11/12) 
17% (2/12) 
92% (11/12) 
EPIC  (N=8) 
100% (8/8) 
63% (5/8) 
63% (5/8) 
100% (8/8) 
75% (6/8) 
100% (8/8) 
NTPEN  (N=13) 
77% (10/13) 
69% (9/13) 
62% (8/13) 
100% (13/13) 
23% (3/13) 
92% (12/13) 
NWEIG  (N=7) 
100% (7/7) 
71% (5/7) 
14% (1/7) 
100% (7/7) 
86% (6/7) 
100% (7/7) 
ORENG  (N=5) 
100% (5/5) 
80% (4/5) 
80% (4/5) 
100% (5/5) 
20% (1/5) 
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=7) 
71% (5/7) 
100% (7/7) 
71% (5/7) 
71% (5/7) 
0% (0/7) 
100% (7/7) 
SWEP  (N=2) 
100% (2/2) 
100% (2/2) 
0% (0/2) 
100% (2/2) 
0% (0/2) 
100% (2/2) 
SWIPE  (N=8) 
75% (6/8) 
75% (6/8) 
75% (6/8) 
100% (8/8) 
63% (5/8) 
100% (8/8) 
SWTPEG  (N=6) 
67% (4/6) 
83% (5/6) 
50% (3/6) 
100% (6/6) 
33% (2/6) 
83% (5/6) 
TEN  (N=6) 
100% (6/6) 
83% (5/6) 
67% (4/6) 
100% (6/6) 
50% (3/6) 
100% (6/6) 
WPNN  (N=7) 
86% (6/7) 
71% (5/7) 
29% (2/7) 
100% (7/7) 
43% (3/7) 
100% (7/7) 
YPEN  (N=8) 
75% (6/8) 
75% (6/8) 
25% (2/8) 
88% (7/8) 
38% (3/8) 
100% (8/8) 

 
15 
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 (n=106). 
 
Country/network 
Individual HCP 
facilitation 
Rescue medication 
training with parents 
Rescue medication 
training in schools 
Supporting all 9 
functions 
England and Wales (N=106) 
93% (99/106) 
98% (104/106) 
85% (90/106) 
20% (21/106) 
England  (N=103) 
93% (96/103) 
98% (101/103) 
84% (87/103) 
20% (21/103) 
Wales (N=3) 
100% (3/3) 
100% (3/3) 
100% (3/3) 
0% (0/3) 
 
 
 
 
 
BRPNF  (N=7) 
100% (7/7) 
100% (7/7) 
71% (5/7) 
14% (1/7) 
CEWT  (N=4) 
100% (4/4) 
100% (4/4) 
75% (3/4) 
25% (1/4) 
EPEN  (N=12) 
100% (12/12) 
100% (12/12) 
58% (7/12) 
8% (1/12) 
EPIC  (N=8) 
100% (8/8) 
100% (8/8) 
100% (8/8) 
38% (3/8) 
NTPEN  (N=13) 
85% (11/13) 
92% (12/13) 
77% (10/13) 
0% (0/13) 
NWEIG  (N=7) 
100% (7/7) 
100% (7/7) 
100% (7/7) 
14% (1/7) 
ORENG  (N=5) 
100% (5/5) 
100% (5/5) 
80% (4/5) 
0% (0/5) 
PENNEC  (N=6) 
100% (6/6) 
100% (6/6) 
100% (6/6) 
67% (4/6) 
SETPEG  (N=7) 
100% (7/7) 
100% (7/7) 
100% (7/7) 
0% (0/7) 
SWEP  (N=2) 
100% (2/2) 
100% (2/2) 
100% (2/2) 
0% (0/2) 
SWIPE  (N=8) 
88% (7/8) 
100% (8/8) 
100% (8/8) 
38% (3/8) 
SWTPEG  (N=6) 
100% (6/6) 
100% (6/6) 
100% (6/6) 
33% (2/6) 
TEN  (N=6) 
83% (5/6) 
100% (6/6) 
100% (6/6) 
33% (2/6) 
WPNN  (N=7) 
86% (6/7) 
86% (6/7) 
43% (3/7) 
14% (1/7) 
YPEN  (N=8) 
75% (6/8) 
100% (8/8) 
100% (8/8) 
25% (2/8) 
 
 

 
16 
Clinic configuration 
 
Defined epilepsy clinic  
 
There was a defined epilepsy clinic, seeing patients at secondary level, in 93% (111/119) of Health 
Boards and Trusts, (Table 10).  Of those, 89% (99/111) 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). There was a total of 232.4 consultant or associate 
specialist led secondary level ‘epilepsy clinics’ taking place each week across England and Wales. 
The mean number of consultant or associate specialist clinics taking place per week was 2.1 
(range 0.1 - 6.0), (Table 11).  
 
Figure 4 shows a comparison of the mean of consultant or associate specialist led secondary 
level epilepsy clinics in in Round 1, April 2018, Round 2, November 2019 and Round 3, November 
2020. 
 
 
Figure 4: Mean of consultant or associate specialist led secondary level epilepsy clinics in 
Round 1, April 2018, Round 2, November 2019 and Round 3 November 2020.
1.0
1.1
1.9
2.1
2.1
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
Mean of clincis

 
17 
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=119) 
93% (111/119) 
7% (8/119) 
England  (N=115) 
93% (107/115) 
7% (8/115) 
Wales (N=4) 
100% (4/4) 
0% (0/4) 
 
 
 
BRPNF  (N=10) 
80% (8/10) 
20% (2/10) 
CEWT  (N=5) 
100% (5/5) 
0% (0/5) 
EPEN  (N=13) 
92% (12/13) 
8% (1/13) 
EPIC  (N=8) 
100% (8/8) 
0% (0/8) 
NTPEN  (N=15) 
87% (13/15) 
13% (2/15) 
NWEIG  (N=7) 
100% (7/7) 
0% (0/7) 
ORENG  (N=7) 
100% (7/7) 
0% (0/7) 
PENNEC  (N=8) 
100% (8/8) 
0% (0/8) 
SETPEG  (N=7) 
100% (7/7) 
0% (0/7) 
SWEP  (N=3) 
100% (3/3) 
0% (0/3) 
SWIPE  (N=9) 
78% (7/9) 
22% (2/9) 
SWTPEG  (N=6) 
100% (6/6) 
0% (0/6) 
TEN  (N=6) 
100% (6/6) 
0% (0/6) 
WPNN  (N=7) 
100% (7/7) 
0% (0/7) 
YPEN  (N=8) 
88% (7/8) 
13% (1/8) 
 
 
 

 
18 
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=111) 
232.4 
2.1 
0.1 
6.0 
England  (N=107) 
220.2 
2.1 
0.1 
6.0 
Wales (N=4) 
12.2 
3.0 
1.5 
4.7 
 
 
 
 
 
BRPNF  (N=8) 
12.7 
1.6 
1.0 
3.0 
CEWT  (N=5) 
12.5 
2.5 
1.0 
5.0 
EPEN  (N=12) 
24.6 
2.0 
0.8 
4.0 
EPIC  (N=8) 
20.0 
2.5 
1.0 
4.7 
NTPEN  (N=13) 
26.6 
2.0 
0.8 
5.3 
NWEIG  (N=7) 
14.3 
2.0 
1.0 
4.0 
ORENG  (N=7) 
11.4 
1.6 
0.1 
5.0 
PENNEC  (N=8) 
17.3 
2.2 
0.5 
4.0 
SETPEG  (N=7) 
20.0 
2.9 
1.3 
6.0 
SWEP  (N=3) 
7.5 
2.5 
1.5 
4.0 
SWIPE  (N=7) 
12.1 
1.7 
0.3 
3.0 
SWTPEG  (N=6) 
16.5 
2.8 
2.0 
4.5 
TEN  (N=6) 
8.5 
1.4 
0.5 
2.0 
WPNN  (N=7) 
14.5 
2.1 
0.5 
5.0 
YPEN  (N=7) 
14.1 
2.0 
0.5 
3.0 
 

 
19 
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=111) 
89% (99/111) 
11% (12/111) 
England  (N=107) 
89% (95/107) 
11% (12/107) 
Wales (N=4) 
100% (4/4) 
0% (0/4) 
 
 
 
BRPNF  (N=8) 
100% (8/8) 
0% (0/8) 
CEWT  (N=5) 
100% (5/5) 
0% (0/5) 
EPEN  (N=12) 
92% (11/12) 
8% (1/12) 
EPIC  (N=8) 
88% (7/8) 
13% (1/8) 
NTPEN  (N=13) 
77% (10/13) 
23% (3/13) 
NWEIG  (N=7) 
100% (7/7) 
0% (0/7) 
ORENG  (N=7) 
71% (5/7) 
29% (2/7) 
PENNEC  (N=8) 
63% (5/8) 
38% (3/8) 
SETPEG  (N=7) 
100% (7/7) 
0% (0/7) 
SWEP  (N=3) 
100% (3/3) 
0% (0/3) 
SWIPE  (N=7) 
100% (7/7) 
0% (0/7) 
SWTPEG  (N=6) 
100% (6/6) 
0% (0/6) 
TEN  (N=6) 
83% (5/6) 
17% (1/6) 
WPNN  (N=7) 
86% (6/7) 
14% (1/7) 
YPEN  (N=7) 
100% (7/7) 
0% (0/7) 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
20 
Epilepsy Best Practice Tariff (BPC) – England only 
 
Table 13 shows 49% (56/115) of Trusts in England were running Epilepsy Best Practice Criteria 
clinics. A further 27% (31/115) were working towards BPT, 18% (21/115) were not running a BPT 
service whilst 6% (7/115) reported that this was not applicable,  
 
Figure 5 shows a comparison of the percentage of Trusts running a BPT epilepsy service in Round 
3 April 2018, November 2019 and November 2020. 
 
 
Figure 5: Percentage of Trusts receiving TFC 223 Epilepsy Best Practice Criteria (England only) 
(n=115). 
 
Figure 5: Percentage of Trusts receiving TFC 223 Epilepsy Best Practice Criteria (England only) 
in Round 3 April 2018, November 2019 and November 2020. 
42%
27%
23%
8%
47%
26%
21%
7%
49%
27%
18%
6%
0%
10%
20%
30%
40%
50%
Yes
In development
No
Not applicable
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Nov 2020

 
21 
Table 13: Trusts that were running TFC 223 Epilepsy Best Practice Criteria (BPC) clinics. 
Country/network 
Yes 
In development 
No 
N/A 
England  (N=115) 
49% (56/115) 
27% (31/115) 
18% (21/115) 
6% (7/115) 
 
 
 
 
 
BRPNF  (N=10) 
30% (3/10) 
40% (4/10) 
30% (3/10) 
0% (0/10) 
CEWT  (N=5) 
60% (3/5) 
0% (0/5) 
20% (1/5) 
20% (1/5) 
EPEN  (N=13) 
54% (7/13) 
15% (2/13) 
15% (2/13) 
15% (2/13) 
EPIC  (N=7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
0% (0/7) 
NTPEN  (N=15) 
27% (4/15) 
40% (6/15) 
20% (3/15) 
13% (2/15) 
NWEIG  (N=7) 
29% (2/7) 
29% (2/7) 
43% (3/7) 
0% (0/7) 
ORENG  (N=7) 
43% (3/7) 
14% (1/7) 
43% (3/7) 
0% (0/7) 
PENNEC  (N=8) 
50% (4/8) 
25% (2/8) 
25% (2/8) 
0% (0/8) 
SETPEG  (N=7) 
43% (3/7) 
29% (2/7) 
29% (2/7) 
0% (0/7) 
SWIPE  (N=9) 
56% (5/9) 
22% (2/9) 
22% (2/9) 
0% (0/9) 
SWTPEG  (N=6) 
83% (5/6) 
17% (1/6) 
0% (0/6) 
0% (0/6) 
TEN  (N=6) 
67% (4/6) 
33% (2/6) 
0% (0/6) 
0% (0/6) 
WPNN  (N=7) 
71% (5/7) 
14% (1/7) 
0% (0/7) 
14% (1/7) 
YPEN  (N=8) 
63% (5/8) 
25% (2/8) 
0% (0/8) 
13% (1/8) 
 
 
 
 

 
22 
Tertiary provision 
 
Paediatric neurology services 
 
A total of 91.1 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). Consultant paediatric neurologists were employed across 24 of 
the 119 of Health Boards and Trusts, (this ranged from 0.0 WTE to 10.6 WTE, (Table 15). 
 
95% (113/119) of Health Boards and Trusts had agreed referral pathways to tertiary paediatric 
neurology services, Table 16.  20% (24/119) of Health Boards and Trusts reported that paediatric 
neurologists could receive direct referrals from general practice or emergency services to assess 
children with possible epilepsy, (Table 17a). Satellite paediatric neurology clinics were hosted in 
75% (89/119) of Health Boards and Trusts, (Table 18). 

 
23 
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=119) 
91.1 
0.0 
10.6 
England  (N=115) 
90.5 
0.0 
10.6 
Wales (N=4) 
0.6 
0.0 
0.6 
 
 
 
 
BRPNF  (N=10) 
0.0 
0.0 
0.0 
CEWT  (N=5) 
5.5 
0.0 
3.0 
EPEN  (N=13) 
4.4 
0.0 
4.4 
EPIC  (N=8) 
3.8 
0.0 
3.8 
NTPEN  (N=15) 
17.6 
0.0 
10.6 
NWEIG  (N=7) 
9.2 
0.0 
7.2 
ORENG  (N=7) 
5.7 
0.0 
5.7 
PENNEC  (N=8) 
5.7 
0.0 
4.7 
SETPEG  (N=7) 
8.0 
0.0 
5.0 
SWEP  (N=3) 
0.6 
0.0 
0.6 
SWIPE  (N=9) 
7.0 
0.0 
7.0 
SWTPEG  (N=6) 
3.0 
0.0 
3.0 
TEN  (N=6) 
10.0 
0.0 
5.0 
WPNN  (N=7) 
7.5 
0.0 
7.5 
YPEN  (N=8) 
3.1 
0.0 
3.1 
 
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=119) 
20% (24/119) 
80% (95/119) 
0.0 - 10.6 
England  (N=115) 
20% (23/115) 
80% (92/115) 
0.0 - 10.6 
Wales (N=4) 
25% (1/4) 
75% (3/4) 
0.6 - 0.6 
 
 
 
 
BRPNF  (N=10) 
10% (1/10) 
90% (9/10) 
0.02 - 0.02 
CEWT  (N=5) 
40% (2/5) 
60% (3/5) 
2.5 - 3.0 
EPEN  (N=13) 
8% (1/13) 
92% (12/13) 
4.4 - 4.4 
EPIC  (N=8) 
13% (1/8) 
88% (7/8) 
3.8 - 3.8 
NTPEN  (N=15) 
27% (4/15) 
73% (11/15) 
1.0 - 10.6 
NWEIG  (N=7) 
29% (2/7) 
71% (5/7) 
2.0 - 7.2 
ORENG  (N=7) 
14% (1/7) 
86% (6/7) 
5.7 - 5.7 
PENNEC  (N=8) 
25% (2/8) 
75% (6/8) 
1.0 - 4.7 
SETPEG  (N=7) 
29% (2/7) 
71% (5/7) 
3.0 - 5.0 
SWEP  (N=3) 
33% (1/3) 
67% (2/3) 
0.6 - 0.6 
SWIPE  (N=9) 
11% (1/9) 
89% (8/9) 
7.0 -7.0 
SWTPEG  (N=6) 
17% (1/6) 
83% (5/6) 
3.0 -3.0 
TEN  (N=6) 
33% (2/6) 
67% (4/6) 
5.0 - 5.0 
WPNN  (N=7) 
14% (1/7) 
86% (6/7) 
7.5 - 7.5 
YPEN  (N=8) 
25% (2/8) 
75% (6/8) 
0.0 - 3.1 
 
 

 
24 
Table 16: Health Boards and Trusts with agreed referral 
pathways to tertiary paediatric neurology services. 
Country/network 
Yes 
No 
England and 
Wales (N=119) 
95% (113/119) 
5% (6/119) 
England  (N=115) 
96% (110/115) 
4% (5/115) 
Wales (N=4) 
75% (3/4) 
25% (1/4) 
 
 
 
BRPNF  (N=10) 
80% (8/10) 
20% (2/10) 
CEWT  (N=5) 
100% (5/5) 
0% (0/5) 
EPEN  (N=13) 
100% (13/13) 
0% (0/13) 
EPIC  (N=8) 
100% (8/8) 
0% (0/8) 
NTPEN  (N=15) 
100% (15/15) 
0% (0/15) 
NWEIG  (N=7) 
86% (6/7) 
14% (1/7) 
ORENG  (N=7) 
100% (7/7) 
0% (0/7) 
PENNEC  (N=8) 
88% (7/8) 
13% (1/8) 
SETPEG  (N=7) 
100% (7/7) 
0% (0/7) 
SWEP  (N=3) 
67% (2/3) 
33% (1/3) 
SWIPE  (N=9) 
100% (9/9) 
0% (0/9) 
SWTPEG  (N=6) 
100% (6/6) 
0% (0/6) 
TEN  (N=6) 
100% (6/6) 
0% (0/6) 
WPNN  (N=7) 
100% (7/7) 
0% (0/7) 
YPEN  (N=8) 
88% (7/8) 
13% (1/8) 
 
 
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=119) 
20% (24/119) 
54% (64/119) 
26% (31/119) 
England  (N=115) 
19% (22/115) 
54% (62/115) 
27% (31/115) 
Wales (N=4) 
50% (2/4) 
50% (2/4) 
0% (0/4) 
 
 
 
 
BRPNF  (N=10) 
10% (1/10) 
20% (2/10) 
70% (7/10) 
CEWT  (N=5) 
20% (1/5) 
20% (1/5) 
60% (3/5) 
EPEN  (N=13) 
0% (0/13) 
100% (13/13) 
0% (0/13) 
EPIC  (N=8) 
13% (1/8) 
50% (4/8) 
38% (3/8) 
NTPEN  (N=15) 
20% (3/15) 
53% (8/15) 
27% (4/15) 
NWEIG  (N=7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
ORENG  (N=7) 
29% (2/7) 
57% (4/7) 
14% (1/7) 
PENNEC  (N=8) 
25% (2/8) 
63% (5/8) 
13% (1/8) 
SETPEG  (N=7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
SWEP  (N=3) 
33% (1/3) 
67% (2/3) 
0% (0/3) 
SWIPE  (N=9) 
11% (1/9) 
44% (4/9) 
44% (4/9) 
SWTPEG  (N=6) 
17% (1/6) 
67% (4/6) 
17% (1/6) 
TEN  (N=6) 
67% (4/6) 
17% (1/6) 
17% (1/6) 
WPNN  (N=7) 
0% (0/7) 
29% (2/7) 
71% (5/7) 
YPEN  (N=8) 
25% (2/8) 
63% (5/8) 
13% (1/8) 

 
25 
Table 17b: Health Boards and Trusts that could receive 
paediatric neurological direct referrals from general 
practice and emergency departments (excl. N/A). 
Country/network 
Yes 
No 
England and Wales 
(N=88) 
27% (24/88) 
73% (64/88) 
England  (N=84) 
26% (22/84) 
74% (62/84) 
Wales (N=4) 
50% (2/4) 
50% (2/4) 
 
 
 
BRPNF  (N=3) 
33% (1/3) 
67% (2/3) 
CEWT  (N=2) 
50% (1/2) 
50% (1/2) 
EPEN  (N=13) 
0% (0/13) 
100% (13/13) 
EPIC  (N=5) 
20% (1/5) 
80% (4/5) 
NTPEN  (N=11) 
27% (3/11) 
73% (8/11) 
NWEIG  (N=7) 
29% (2/7) 
71% (5/7) 
ORENG  (N=6) 
33% (2/6) 
67% (4/6) 
PENNEC  (N=7) 
29% (2/7) 
71% (5/7) 
SETPEG  (N=7) 
43% (3/7) 
57% (4/7) 
SWEP  (N=3) 
33% (1/3) 
67% (2/3) 
SWIPE  (N=5) 
20% (1/5) 
80% (4/5) 
SWTPEG  (N=5) 
20% (1/5) 
80% (4/5) 
TEN  (N=5) 
80% (4/5) 
20% (1/5) 
WPNN  (N=2) 
0% (0/2) 
100% (2/2) 
YPEN  (N=7) 
29% (2/7) 
71% (5/7) 
 
Table 18: Health Boards and Trusts that were hosting satellite 
paediatric neurology clinics. 
Country/network 
Yes 
No 
N/A 
England and 
Wales (N=119) 
75% (89/119) 
22% (26/119) 
3% (4/119) 
England  (N=115) 
74% (85/115) 
23% (26/115) 
3% (4/115) 
Wales (N=4) 
100% (4/4) 
0% (0/4) 
0% (0/4) 
 
 
 
 
BRPNF  (N=10) 
20% (2/10) 
60% (6/10) 
20% (2/10) 
CEWT  (N=5) 
80% (4/5) 
0% (0/5) 
20% (1/5) 
EPEN  (N=13) 
85% (11/13) 
15% (2/13) 
0% (0/13) 
EPIC  (N=8) 
75% (6/8) 
25% (2/8) 
0% (0/8) 
NTPEN  (N=15) 
33% (5/15) 
67% (10/15) 
0% (0/15) 
NWEIG  (N=7) 
86% (6/7) 
0% (0/7) 
14% (1/7) 
ORENG  (N=7) 
86% (6/7) 
14% (1/7) 
0% (0/7) 
PENNEC  (N=8) 
88% (7/8) 
13% (1/8) 
0% (0/8) 
SETPEG  (N=7) 
86% (6/7) 
14% (1/7) 
0% (0/7) 
SWEP  (N=3) 
100% (3/3) 
0% (0/3) 
0% (0/3) 
SWIPE  (N=9) 
100% (9/9) 
0% (0/9) 
0% (0/9) 
SWTPEG  (N=6) 
100% (6/6) 
0% (0/6) 
0% (0/6) 
TEN  (N=6) 
100% (6/6) 
0% (0/6) 
0% (0/6) 
WPNN  (N=7) 
100% (7/7) 
0% (0/7) 
0% (0/7) 
YPEN  (N=8) 
63% (5/8) 
38% (3/8) 
0% (0/8) 
 
 

 
26 
Other services 
16% (19/119) of Health Boards and Trusts reported they could facilitate commencement of the 
ketogenic diet and 18% (22/119) reported they could facilitate ongoing review of the diet, (Table 
19 and Table 20 respectively). 10% (12/119) reported they could provide Vagal Nerve Stimulator 
(VNS) insertion services and 22% (26/119) 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 ketogenic diet and vagal 
nerve stimulator (VNS) services within their locations in Round 3 April 2018, Round 3 November 
2019 and November 2020. 
  
Figure 6: Percentage of Health Boards and Trusts that could provide ketogenic diet and vagal 
nerve stimulator services in Round 3 April 2018, November 2019 and November 2020. 
 
 
 
 
 
15%
21%
8%
23%
15%
19%
10%
21%
16%
18%
10%
22%
0%
5%
10%
15%
20%
25%
Commence diet
Ongoing review
Insertion
Review
Ketogenic diet
Vagal nerve stimulator
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Apr 2020

 
27 
 
Table 19: Health Boards and Trusts that could facilitate the 
commencement of a ketogenic diet.  
Country/network 
Yes 
No 
Uncertain 
England and Wales 
(N=119) 
16% (19/119) 
82% (98/119) 
2% (2/119) 
England  (N=115) 
17% (19/115) 
82% (94/115) 
2% (2/115) 
Wales (N=4) 
0% (0/4) 
100% (4/4) 
0% (0/4) 
 
 
 
 
BRPNF  (N=10) 
0% (0/10) 
100% (10/10) 
0% (0/10) 
CEWT  (N=5) 
60% (3/5) 
40% (2/5) 
0% (0/5) 
EPEN  (N=13) 
8% (1/13) 
92% (12/13) 
0% (0/13) 
EPIC  (N=8) 
13% (1/8) 
88% (7/8) 
0% (0/8) 
NTPEN  (N=15) 
7% (1/15) 
93% (14/15) 
0% (0/15) 
NWEIG  (N=7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
ORENG  (N=7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
PENNEC  (N=8) 
13% (1/8) 
88% (7/8) 
0% (0/8) 
SETPEG  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
SWEP  (N=3) 
0% (0/3) 
100% (3/3) 
0% (0/3) 
SWIPE  (N=9) 
22% (2/9) 
56% (5/9) 
22% (2/9) 
SWTPEG  (N=6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
TEN  (N=6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
WPNN  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
YPEN  (N=8) 
25% (2/8) 
75% (6/8) 
0% (0/8) 
 
Table 20: Health Boards and Trusts that could undertake ongoing 
review of a ketogenic diet.  
Country/network 
Yes 
No 
Uncertain 
England and Wales 
(N=119) 
18% (22/119) 
82% (97/119) 
0% (0/119) 
England  (N=115) 
19% (22/115) 
81% (93/115) 
0% (0/115) 
Wales (N=4) 
0% (0/4) 
100% (4/4) 
0% (0/4) 
 
 
 
 
BRPNF  (N=10) 
0% (0/10) 
100% (10/10) 
0% (0/10) 
CEWT  (N=5) 
60% (3/5) 
40% (2/5) 
0% (0/5) 
EPEN  (N=13) 
8% (1/13) 
92% (12/13) 
0% (0/13) 
EPIC  (N=8) 
13% (1/8) 
88% (7/8) 
0% (0/8) 
NTPEN  (N=15) 
7% (1/15) 
93% (14/15) 
0% (0/15) 
NWEIG  (N=7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
ORENG  (N=7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
PENNEC  (N=8) 
25% (2/8) 
75% (6/8) 
0% (0/8) 
SETPEG  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
SWEP  (N=3) 
0% (0/3) 
100% (3/3) 
0% (0/3) 
SWIPE  (N=9) 
44% (4/9) 
56% (5/9) 
0% (0/9) 
SWTPEG  (N=6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
TEN  (N=6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
WPNN  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
YPEN  (N=8) 
25% (2/8) 
75% (6/8) 
0% (0/8) 

 
28 
 
Table 21: Health Boards and Trusts that were able to insert vagal 
nerve stimulators.  
Country/network 
Yes 
No 
Uncertain  
England and 
Wales (N=119) 
10% (12/119) 
90% (107/119) 
0% (0/119) 
England  (N=115) 
10% (12/115) 
90% (103/115) 
0% (0/115) 
Wales (N=4) 
0% (0/4) 
100% (4/4) 
0% (0/4) 
 
 
 
 
BRPNF  (N=10) 
0% (0/10) 
100% (10/10) 
0% (0/10) 
CEWT  (N=5) 
20% (1/5) 
80% (4/5) 
0% (0/5) 
EPEN  (N=13) 
8% (1/13) 
92% (12/13) 
0% (0/13) 
EPIC  (N=8) 
13% (1/8) 
88% (7/8) 
0% (0/8) 
NTPEN  (N=15) 
7% (1/15) 
93% (14/15) 
0% (0/15) 
NWEIG  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
ORENG  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
PENNEC  (N=8) 
13% (1/8) 
88% (7/8) 
0% (0/8) 
SETPEG  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
SWEP  (N=3) 
0% (0/3) 
100% (3/3) 
0% (0/3) 
SWIPE  (N=9) 
11% (1/9) 
89% (8/9) 
0% (0/9) 
SWTPEG  (N=6) 
0% (0/6) 
100% (6/6) 
0% (0/6) 
TEN  (N=6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
WPNN  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
YPEN  (N=8) 
13% (1/8) 
88% (7/8) 
0% (0/8) 
 
Table 22: Health Boards and Trusts that were able to review vagal 
nerve stimulators. 
Country/network 
Yes 
No 
Uncertain 
England and 
Wales (N=119) 
22% (26/119) 
78% (93/119) 
0% (0/119) 
England  (N=115) 
21% (24/115) 
79% (91/115) 
0% (0/115) 
Wales (N=4) 
50% (2/4) 
50% (2/4) 
0% (0/4) 
 
 
 
 
BRPNF  (N=10) 
10% (1/10) 
90% (9/10) 
0% (0/10) 
CEWT  (N=5) 
40% (2/5) 
60% (3/5) 
0% (0/5) 
EPEN  (N=13) 
15% (2/13) 
85% (11/13) 
0% (0/13) 
EPIC  (N=8) 
13% (1/8) 
88% (7/8) 
0% (0/8) 
NTPEN  (N=15) 
7% (1/15) 
93% (14/15) 
0% (0/15) 
NWEIG  (N=7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
ORENG  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
PENNEC  (N=8) 
25% (2/8) 
75% (6/8) 
0% (0/8) 
SETPEG  (N=7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
SWEP  (N=3) 
67% (2/3) 
33% (1/3) 
0% (0/3) 
SWIPE  (N=9) 
44% (4/9) 
56% (5/9) 
0% (0/9) 
SWTPEG  (N=6) 
0% (0/6) 
100% (6/6) 
0% (0/6) 
TEN  (N=6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
WPNN  (N=7) 
14% (1/7) 
86% (6/7) 
0% (0/7) 
YPEN  (N=8) 
13% (1/8) 
88% (7/8) 
0% (0/8) 

 
29 
Investigations 
 
4% (5/119) Health Boards and Trusts were not able to offer 12 lead ECG service. In 39% (46/119) of 
Health Boards and Trusts, it was not possible to obtain a standard EEG at a location within their 
Trust, (Table 23).  
Figure 7 shows a comparison of availability of epilepsy investigation services across England and 
Wales in Round 3 April 2018, November 2019 and November 2020. 
 
Figure 7: Percentage of Health Boards and Trusts that could provide investigation services in 
Round 3, April 2018, November 2019 and November 2020.
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%
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
Apr 2018
Round 3
Nov 2019
Round 3
Apr 2020

 
30 
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=119) 
96% (114/119) 
4% (5/119) 
0% (0/119) 
94% (112/119) 
6% (7/119) 
0% (0/119) 
63% (75/119) 
37% (44/119) 
0% (0/119) 
England  (N=115) 
96% (110/115) 
4% (5/115) 
0% (0/115) 
94% (108/115) 
6% (7/115) 
0% (0/115) 
62% (71/115) 
38% (44/115) 
0% (0/115) 
Wales (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) 
 
 
 
 
 
 
 
 
 
 
BRPNF  (N=10) 
90% (9/10) 
10% (1/10) 
0% (0/10) 
80% (8/10) 
20% (2/10) 
0% (0/10) 
60% (6/10) 
40% (4/10) 
0% (0/10) 
CEWT  (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) 
EPEN  (N=13) 
92% (12/13) 
8% (1/13) 
0% (0/13) 
92% (12/13) 
8% (1/13) 
0% (0/13) 
85% (11/13) 
15% (2/13) 
0% (0/13) 
EPIC  (N=8) 
100% (8/8) 
0% (0/8) 
0% (0/8) 
100% (8/8) 
0% (0/8) 
0% (0/8) 
63% (5/8) 
38% (3/8) 
0% (0/8) 
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=7) 
100% (7/7) 
0% (0/7) 
0% (0/7) 
86% (6/7) 
14% (1/7) 
0% (0/7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
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=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) 
SETPEG  (N=7) 
86% (6/7) 
14% (1/7) 
0% (0/7) 
86% (6/7) 
14% (1/7) 
0% (0/7) 
71% (5/7) 
29% (2/7) 
0% (0/7) 
SWEP  (N=3) 
100% (3/3) 
0% (0/3) 
0% (0/3) 
100% (3/3) 
0% (0/3) 
0% (0/3) 
100% (3/3) 
0% (0/3) 
0% (0/3) 
SWIPE  (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) 
SWTPEG  (N=6) 
100% (6/6) 
0% (0/6) 
0% (0/6) 
100% (6/6) 
0% (0/6) 
0% (0/6) 
17% (1/6) 
83% (5/6) 
0% (0/6) 
TEN  (N=6) 
83% (5/6) 
17% (1/6) 
0% (0/6) 
100% (6/6) 
0% (0/6) 
0% (0/6) 
33% (2/6) 
67% (4/6) 
0% (0/6) 
WPNN  (N=7) 
86% (6/7) 
14% (1/7) 
0% (0/7) 
86% (6/7) 
14% (1/7) 
0% (0/7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
YPEN  (N=8) 
100% (8/8) 
0% (0/8) 
0% (0/8) 
88% (7/8) 
13% (1/8) 
0% (0/8) 
50% (4/8) 
50% (4/8) 
0% (0/8) 
 
 

 
31 
 
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=119) 
58% (69/119) 
42% (50/119) 
0% (0/119) 
61% (73/119) 
39% (46/119) 
0% (0/119) 
58% (69/119) 
42% (50/119) 
0% (0/119) 
England  (N=115) 
57% (65/115) 
43% (50/115) 
0% (0/115) 
60% (69/115) 
40% (46/115) 
0% (0/115) 
57% (65/115) 
43% (50/115) 
0% (0/115) 
Wales (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) 
 
 
 
 
 
 
 
 
 
 
BRPNF  (N=10) 
30% (3/10) 
70% (7/10) 
0% (0/10) 
60% (6/10) 
40% (4/10) 
0% (0/10) 
60% (6/10) 
40% (4/10) 
0% (0/10) 
CEWT  (N=5) 
100% (5/5) 
0% (0/5) 
0% (0/5) 
80% (4/5) 
20% (1/5) 
0% (0/5) 
80% (4/5) 
20% (1/5) 
0% (0/5) 
EPEN  (N=13) 
69% (9/13) 
31% (4/13) 
0% (0/13) 
62% (8/13) 
38% (5/13) 
0% (0/13) 
54% (7/13) 
46% (6/13) 
0% (0/13) 
EPIC  (N=8) 
50% (4/8) 
50% (4/8) 
0% (0/8) 
38% (3/8) 
63% (5/8) 
0% (0/8) 
38% (3/8) 
63% (5/8) 
0% (0/8) 
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=7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
ORENG  (N=7) 
71% (5/7) 
29% (2/7) 
0% (0/7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
PENNEC  (N=8) 
50% (4/8) 
50% (4/8) 
0% (0/8) 
50% (4/8) 
50% (4/8) 
0% (0/8) 
50% (4/8) 
50% (4/8) 
0% (0/8) 
SETPEG  (N=7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
SWEP  (N=3) 
100% (3/3) 
0% (0/3) 
0% (0/3) 
100% (3/3) 
0% (0/3) 
0% (0/3) 
100% (3/3) 
0% (0/3) 
0% (0/3) 
SWIPE  (N=9) 
78% (7/9) 
22% (2/9) 
0% (0/9) 
89% (8/9) 
11% (1/9) 
0% (0/9) 
67% (6/9) 
33% (3/9) 
0% (0/9) 
SWTPEG  (N=6) 
67% (4/6) 
33% (2/6) 
0% (0/6) 
83% (5/6) 
17% (1/6) 
0% (0/6) 
67% (4/6) 
33% (2/6) 
0% (0/6) 
TEN  (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) 
WPNN  (N=7) 
71% (5/7) 
29% (2/7) 
0% (0/7) 
71% (5/7) 
29% (2/7) 
0% (0/7) 
71% (5/7) 
29% (2/7) 
0% (0/7) 
YPEN  (N=8) 
50% (4/8) 
50% (4/8) 
0% (0/8) 
75% (6/8) 
25% (2/8) 
0% (0/8) 
75% (6/8) 
25% (2/8) 
0% (0/8) 
 
 
 

 
32 
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=119) 
58% (69/119) 
42% (50/119) 
0% (0/119) 
39% (47/119) 
60% (71/119) 
1% (1/119) 
58% (69/119) 
42% (50/119) 
0% (0/119) 
England  (N=115) 
57% (65/115) 
43% (50/115) 
0% (0/115) 
37% (43/115) 
62% (71/115) 
1% (1/115) 
57% (65/115) 
43% (50/115) 
0% (0/115) 
Wales (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) 
 
 
 
 
 
 
 
 
 
 
BRPNF  (N=10) 
60% (6/10) 
40% (4/10) 
0% (0/10) 
30% (3/10) 
70% (7/10) 
0% (0/10) 
60% (6/10) 
40% (4/10) 
0% (0/10) 
CEWT  (N=5) 
80% (4/5) 
20% (1/5) 
0% (0/5) 
80% (4/5) 
20% (1/5) 
0% (0/5) 
20% (1/5) 
80% (4/5) 
0% (0/5) 
EPEN  (N=13) 
46% (6/13) 
54% (7/13) 
0% (0/13) 
15% (2/13) 
85% (11/13) 
0% (0/13) 
69% (9/13) 
31% (4/13) 
0% (0/13) 
EPIC  (N=8) 
38% (3/8) 
63% (5/8) 
0% (0/8) 
38% (3/8) 
63% (5/8) 
0% (0/8) 
63% (5/8) 
38% (3/8) 
0% (0/8) 
NTPEN  (N=15) 
60% (9/15) 
40% (6/15) 
0% (0/15) 
40% (6/15) 
60% (9/15) 
0% (0/15) 
87% (13/15) 
13% (2/15) 
0% (0/15) 
NWEIG  (N=7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
71% (5/7) 
29% (2/7) 
0% (0/7) 
ORENG  (N=7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
PENNEC  (N=8) 
50% (4/8) 
50% (4/8) 
0% (0/8) 
38% (3/8) 
63% (5/8) 
0% (0/8) 
63% (5/8) 
38% (3/8) 
0% (0/8) 
SETPEG  (N=7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
71% (5/7) 
29% (2/7) 
0% (0/7) 
SWEP  (N=3) 
100% (3/3) 
0% (0/3) 
0% (0/3) 
100% (3/3) 
0% (0/3) 
0% (0/3) 
0% (0/3) 
100% (3/3) 
0% (0/3) 
SWIPE  (N=9) 
78% (7/9) 
22% (2/9) 
0% (0/9) 
67% (6/9) 
33% (3/9) 
0% (0/9) 
44% (4/9) 
56% (5/9) 
0% (0/9) 
SWTPEG  (N=6) 
83% (5/6) 
17% (1/6) 
0% (0/6) 
17% (1/6) 
67% (4/6) 
17% (1/6) 
67% (4/6) 
33% (2/6) 
0% (0/6) 
TEN  (N=6) 
33% (2/6) 
67% (4/6) 
0% (0/6) 
33% (2/6) 
67% (4/6) 
0% (0/6) 
67% (4/6) 
33% (2/6) 
0% (0/6) 
WPNN  (N=7) 
71% (5/7) 
29% (2/7) 
0% (0/7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
YPEN  (N=8) 
75% (6/8) 
25% (2/8) 
0% (0/8) 
38% (3/8) 
63% (5/8) 
0% (0/8) 
25% (2/8) 
75% (6/8) 
0% (0/8) 
 
 

 
33 
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=119) 
23% (27/119) 
77% (92/119) 
0% (0/119) 
13% (16/119) 
86% (102/119) 
1% (1/119) 
16% (19/119) 
84% (100/119) 
0% (0/119) 
England  (N=115) 
22% (25/115) 
78% (90/115) 
0% (0/115) 
12% (14/115) 
87% (100/115) 
1% (1/115) 
15% (17/115) 
85% (98/115) 
0% (0/115) 
Wales (N=4) 
50% (2/4) 
50% (2/4) 
0% (0/4) 
50% (2/4) 
50% (2/4) 
0% (0/4) 
50% (2/4) 
50% (2/4) 
0% (0/4) 
 
 
 
 
 
 
 
 
 
 
BRPNF  (N=10) 
20% (2/10) 
80% (8/10) 
0% (0/10) 
0% (0/10) 
100% (10/10) 
0% (0/10) 
10% (1/10) 
90% (9/10) 
0% (0/10) 
CEWT  (N=5) 
60% (3/5) 
40% (2/5) 
0% (0/5) 
20% (1/5) 
80% (4/5) 
0% (0/5) 
20% (1/5) 
80% (4/5) 
0% (0/5) 
EPEN  (N=13) 
15% (2/13) 
85% (11/13) 
0% (0/13) 
0% (0/13) 
92% (12/13) 
8% (1/13) 
8% (1/13) 
92% (12/13) 
0% (0/13) 
EPIC  (N=8) 
38% (3/8) 
63% (5/8) 
0% (0/8) 
38% (3/8) 
63% (5/8) 
0% (0/8) 
25% (2/8) 
75% (6/8) 
0% (0/8) 
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=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) 
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=8) 
13% (1/8) 
88% (7/8) 
0% (0/8) 
13% (1/8) 
88% (7/8) 
0% (0/8) 
13% (1/8) 
88% (7/8) 
0% (0/8) 
SETPEG  (N=7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
SWEP  (N=3) 
33% (1/3) 
67% (2/3) 
0% (0/3) 
33% (1/3) 
67% (2/3) 
0% (0/3) 
33% (1/3) 
67% (2/3) 
0% (0/3) 
SWIPE  (N=9) 
33% (3/9) 
67% (6/9) 
0% (0/9) 
11% (1/9) 
89% (8/9) 
0% (0/9) 
22% (2/9) 
78% (7/9) 
0% (0/9) 
SWTPEG  (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) 
TEN  (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) 
WPNN  (N=7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
YPEN  (N=8) 
13% (1/8) 
88% (7/8) 
0% (0/8) 
0% (0/8) 
100% (8/8) 
0% (0/8) 
0% (0/8) 
100% (8/8) 
0% (0/8) 
 

 
34 
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=119) 
61% (72/119) 
39% (47/119) 
0% (0/119) 
England  (N=115) 
59% (68/115) 
41% (47/115) 
0% (0/115) 
Wales (N=4) 
100% (4/4) 
0% (0/4) 
0% (0/4) 
 
 
 
 
BRPNF  (N=10) 
70% (7/10) 
30% (3/10) 
0% (0/10) 
CEWT  (N=5) 
100% (5/5) 
0% (0/5) 
0% (0/5) 
EPEN  (N=13) 
46% (6/13) 
54% (7/13) 
0% (0/13) 
EPIC  (N=8) 
38% (3/8) 
63% (5/8) 
0% (0/8) 
NTPEN  (N=15) 
53% (8/15) 
47% (7/15) 
0% (0/15) 
NWEIG  (N=7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
ORENG  (N=7) 
86% (6/7) 
14% (1/7) 
0% (0/7) 
PENNEC  (N=8) 
50% (4/8) 
50% (4/8) 
0% (0/8) 
SETPEG  (N=7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
SWEP  (N=3) 
100% (3/3) 
0% (0/3) 
0% (0/3) 
SWIPE  (N=9) 
78% (7/9) 
22% (2/9) 
0% (0/9) 
SWTPEG  (N=6) 
83% (5/6) 
17% (1/6) 
0% (0/6) 
TEN  (N=6) 
50% (3/6) 
50% (3/6) 
0% (0/6) 
WPNN  (N=7) 
71% (5/7) 
29% (2/7) 
0% (0/7) 
YPEN  (N=8) 
50% (4/8) 
50% (4/8) 
0% (0/8) 

 
35 
Service contact  
 
All of Health Boards and Trusts, 100% (119/119) reported availability of specialist epilepsy advice 
between scheduled reviews across England and Wales, (Table 24).  It was reported that the service 
was available; some weekdays for 52 weeks of the year in 1% (1/119) Health Boards and Trusts; 
every weekday for 52 weeks of the year in 55% (66/119) of Health Boards and Trusts; all weekday 
and out of hours for 52 weeks of the year in 8% (9/119) of Health Boards and Trusts; some 
weekdays for part of the year in 10% (12/119) of Health Boards and Trusts; all weekdays for part of 
the year in 25% (30/119) Health Boards and Trusts; or all weekdays and out of hours for part of the 
year in 1% (1/119) Health Boards and Trusts, (Table 25). 
 
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 and November 2020. 
 
4%
1%
1%
49%
49%
55%
7%
7%
8%
10%
10%
10%
26%
29%
25%
1%
1%
1%
0%
10%
20%
30%
40%
50%
60%
70%
80%
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Nov 2020
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Nov 2020
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Nov 2020
Some weekdays
All weekdays
All weekdays and out of hours
Available 52 weeks of the year
Not available 52 weeks of the year

 
36 
Half, 50% (59/119) 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 
50% (59/119), (Table 27). 
 
In the 12% (14/119) 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 
(10/119); a combination of all three (3/119); a community paediatrician (1/119).  
 
Figure 9 shows a comparison of the typical response time for specialist advice in Round 3, April 
2018, November 2019 and November 2020.   
 
Figure 10 shows a comparison of professionals who ‘typically’ provided initial specialist advice in 
Round 3, April 2018, November 2019 and November 2020. 
 
83% (99/119) 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 and November 2020. 
 
 
Figure 9: Typical response time for specialist advice in Round 3 April 2018, November 2019 and 
November 2020. 
13%
40%
36%
12%
8%
45%
37%
11%
10%
50%
31%
9%
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

 
37 
 
 
Figure 10: Professional who ‘typically’ provides initial specialist advice in Round 3, April 2018, 
November 2019 and November 2020. 
 
 
 
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 and November 2020. 
44%
43%
2%
11%
41%
46%
2%
12%
37%
50%
2%
12%
0%
10%
20%
30%
40%
50%
Consultant
Paediatrician with
'expertise in epilepsy'
Epilepsy specialist
nurse
Paediatric neurologist
Other
Percentage of Trusts and Health Boards 
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Apr 2020
77%
24%
83%
17%
0%
20%
40%
60%
80%
100%
Yes
No
Percentage of Trusts and Health Boards 
Round 3
Nov 2019
Round 3
Nov 2020

 
38 
Table 24: Health Boards and Trusts providing specialist advice between scheduled reviews. 
 
Country/network 
Yes 
No 
England and Wales (N=119) 
100% (119/119) 
0% (0/119) 
England  (N=115) 
100% (115/115) 
0% (0/115) 
Wales (N=4) 
100% (4/4) 
0% (0/4) 
 
 
 
BRPNF  (N=10) 
100% (10/10) 
0% (0/10) 
CEWT  (N=5) 
100% (5/5) 
0% (0/5) 
EPEN  (N=13) 
100% (13/13) 
0% (0/13) 
EPIC  (N=8) 
100% (8/8) 
0% (0/8) 
NTPEN  (N=15) 
100% (15/15) 
0% (0/15) 
NWEIG  (N=7) 
100% (7/7) 
0% (0/7) 
ORENG  (N=7) 
100% (7/7) 
0% (0/7) 
PENNEC  (N=8) 
100% (8/8) 
0% (0/8) 
SETPEG  (N=7) 
100% (7/7) 
0% (0/7) 
SWEP  (N=3) 
100% (3/3) 
0% (0/3) 
SWIPE  (N=9) 
100% (9/9) 
0% (0/9) 
SWTPEG  (N=6) 
100% (6/6) 
0% (0/6) 
TEN  (N=6) 
100% (6/6) 
0% (0/6) 
WPNN  (N=7) 
100% (7/7) 
0% (0/7) 
YPEN  (N=8) 
100% (8/8) 
0% (0/8) 

 
39 
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=119) 
1% (1/119) 
55% (66/119) 
8% (9/119) 
10% (12/119) 
25% (30/119) 
1% (1/119) 
England  (N=115) 
1% (1/115) 
55% (63/115) 
8% (9/115) 
10% (11/115) 
26% (30/115) 
1% (1/115) 
Wales (N=4) 
0% (0/4) 
75% (3/4) 
0% (0/4) 
25% (1/4) 
0% (0/4) 
0% (0/4) 
 
 
 
 
 
 
 
BRPNF  (N=10) 
0% (0/10) 
40% (4/10) 
0% (0/10) 
10% (1/10) 
50% (5/10) 
0% (0/10) 
CEWT  (N=5) 
0% (0/5) 
100% (5/5) 
0% (0/5) 
0% (0/5) 
0% (0/5) 
0% (0/5) 
EPEN  (N=13) 
0% (0/13) 
54% (7/13) 
0% (0/13) 
8% (1/13) 
38% (5/13) 
0% (0/13) 
EPIC  (N=8) 
0% (0/8) 
88% (7/8) 
0% (0/8) 
0% (0/8) 
13% (1/8) 
0% (0/8) 
NTPEN  (N=15) 
0% (0/15) 
53% (8/15) 
13% (2/15) 
13% (2/15) 
20% (3/15) 
0% (0/15) 
NWEIG  (N=7) 
0% (0/7) 
86% (6/7) 
0% (0/7) 
0% (0/7) 
14% (1/7) 
0% (0/7) 
ORENG  (N=7) 
0% (0/7) 
71% (5/7) 
14% (1/7) 
0% (0/7) 
14% (1/7) 
0% (0/7) 
PENNEC  (N=8) 
13% (1/8) 
38% (3/8) 
25% (2/8) 
13% (1/8) 
13% (1/8) 
0% (0/8) 
SETPEG  (N=7) 
0% (0/7) 
43% (3/7) 
0% (0/7) 
0% (0/7) 
57% (4/7) 
0% (0/7) 
SWEP  (N=3) 
0% (0/3) 
67% (2/3) 
0% (0/3) 
33% (1/3) 
0% (0/3) 
0% (0/3) 
SWIPE  (N=9) 
0% (0/9) 
33% (3/9) 
11% (1/9) 
56% (5/9) 
0% (0/9) 
0% (0/9) 
SWTPEG  (N=6) 
0% (0/6) 
17% (1/6) 
17% (1/6) 
17% (1/6) 
33% (2/6) 
17% (1/6) 
TEN  (N=6) 
0% (0/6) 
33% (2/6) 
33% (2/6) 
0% (0/6) 
33% (2/6) 
0% (0/6) 
WPNN  (N=7) 
0% (0/7) 
57% (4/7) 
0% (0/7) 
0% (0/7) 
43% (3/7) 
0% (0/7) 
YPEN  (N=8) 
0% (0/8) 
75% (6/8) 
0% (0/8) 
0% (0/8) 
25% (2/8) 
0% (0/8) 
 

 
40 
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=119) 
10% (12/119) 
50% (59/119) 
31% (37/119) 
9% (11/119) 
England  (N=115) 
10% (12/115) 
50% (58/115) 
30% (35/115) 
9% (10/115) 
Wales (N=4) 
0% (0/4) 
25% (1/4) 
50% (2/4) 
25% (1/4) 
 
 
 
 
 
BRPNF  (N=10) 
0% (0/10) 
30% (3/10) 
50% (5/10) 
20% (2/10) 
CEWT  (N=5) 
20% (1/5) 
40% (2/5) 
40% (2/5) 
0% (0/5) 
EPEN  (N=13) 
0% (0/13) 
46% (6/13) 
46% (6/13) 
8% (1/13) 
EPIC  (N=8) 
0% (0/8) 
75% (6/8) 
25% (2/8) 
0% (0/8) 
NTPEN  (N=15) 
20% (3/15) 
47% (7/15) 
13% (2/15) 
20% (3/15) 
NWEIG  (N=7) 
14% (1/7) 
71% (5/7) 
14% (1/7) 
0% (0/7) 
ORENG  (N=7) 
29% (2/7) 
43% (3/7) 
14% (1/7) 
14% (1/7) 
PENNEC  (N=8) 
0% (0/8) 
63% (5/8) 
13% (1/8) 
25% (2/8) 
SETPEG  (N=7) 
0% (0/7) 
57% (4/7) 
29% (2/7) 
14% (1/7) 
SWEP  (N=3) 
0% (0/3) 
0% (0/3) 
67% (2/3) 
33% (1/3) 
SWIPE  (N=9) 
33% (3/9) 
33% (3/9) 
33% (3/9) 
0% (0/9) 
SWTPEG  (N=6) 
0% (0/6) 
83% (5/6) 
17% (1/6) 
0% (0/6) 
TEN  (N=6) 
33% (2/6) 
33% (2/6) 
33% (2/6) 
0% (0/6) 
WPNN  (N=7) 
0% (0/7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
YPEN  (N=8) 
0% (0/8) 
63% (5/8) 
38% (3/8) 
0% (0/8) 
 
 
 
 
 
 

 
41 
Table 27: Professional who ‘typically’ provides initial specialist advice.  
 
Country/networ
k 
ESN 
Consultant with 
‘expertise in 
epilepsy’ 
Paediatric 
neurologist 
Other 
England and 
Wales (N=119) 
50% (59/119) 
37% (44/119) 
2% (2/119) 
12% (14/119) 
England  (N=115) 
50% (57/115) 
37% (42/115) 
2% (2/115) 
12% (14/115) 
Wales (N=4) 
50% (2/4) 
50% (2/4) 
0% (0/4) 
0% (0/4) 
 
 
 
 
 
BRPNF  (N=10) 
20% (2/10) 
50% (5/10) 
0% (0/10) 
30% (3/10) 
CEWT  (N=5) 
40% (2/5) 
20% (1/5) 
20% (1/5) 
20% (1/5) 
EPEN  (N=13) 
54% (7/13) 
46% (6/13) 
0% (0/13) 
0% (0/13) 
EPIC  (N=8) 
63% (5/8) 
38% (3/8) 
0% (0/8) 
0% (0/8) 
NTPEN  (N=15) 
60% (9/15) 
33% (5/15) 
7% (1/15) 
0% (0/15) 
NWEIG  (N=7) 
57% (4/7) 
14% (1/7) 
0% (0/7) 
29% (2/7) 
ORENG  (N=7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
0% (0/7) 
PENNEC  (N=8) 
25% (2/8) 
63% (5/8) 
0% (0/8) 
13% (1/8) 
SETPEG  (N=7) 
71% (5/7) 
14% (1/7) 
0% (0/7) 
14% (1/7) 
SWEP  (N=3) 
67% (2/3) 
33% (1/3) 
0% (0/3) 
0% (0/3) 
SWIPE  (N=9) 
44% (4/9) 
33% (3/9) 
0% (0/9) 
22% (2/9) 
SWTPEG  (N=6) 
67% (4/6) 
17% (1/6) 
0% (0/6) 
17% (1/6) 
TEN  (N=6) 
33% (2/6) 
50% (3/6) 
0% (0/6) 
17% (1/6) 
WPNN  (N=7) 
57% (4/7) 
29% (2/7) 
0% (0/7) 
14% (1/7) 
YPEN  (N=8) 
38% (3/8) 
50% (4/8) 
0% (0/8) 
13% (1/8) 
 
 
 
 

 
42 
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=119) 
83% (99/119) 
17% (20/119) 
England  (N=115) 
83% (95/115) 
17% (20/115) 
Wales (N=4) 
100% (4/4) 
0% (0/4) 
 
 
 
BRPNF  (N=10) 
60% (6/10) 
40% (4/10) 
CEWT  (N=5) 
60% (3/5) 
40% (2/5) 
EPEN  (N=13) 
92% (12/13) 
8% (1/13) 
EPIC  (N=8) 
88% (7/8) 
13% (1/8) 
NTPEN  (N=15) 
93% (14/15) 
7% (1/15) 
NWEIG  (N=7) 
100% (7/7) 
0% (0/7) 
ORENG  (N=7) 
71% (5/7) 
29% (2/7) 
PENNEC  (N=8) 
63% (5/8) 
38% (3/8) 
SETPEG  (N=7) 
100% (7/7) 
0% (0/7) 
SWEP  (N=3) 
100% (3/3) 
0% (0/3) 
SWIPE  (N=9) 
78% (7/9) 
22% (2/9) 
SWTPEG  (N=6) 
100% (6/6) 
0% (0/6) 
TEN  (N=6) 
83% (5/6) 
17% (1/6) 
WPNN  (N=7) 
71% (5/7) 
29% (2/7) 
YPEN  (N=8) 
88% (7/8) 
13% (1/8) 
 
 

 
43 
Transition 
 
Table 29 shows 14% (17/119) of Health Boards and Trusts did not have agreed referral pathways 
for young people to adult services. An outpatient clinic specifically for young people with 
epilepsies was reported to be in place in 39% (47/119) of Health Boards and Trusts (Table 30). The 
median age of acceptance into these clinics was 15 years with a minimum acceptance age of 11 
years and a maximum acceptance age of 17 (Table 31). 
 
Figure 12 shows the proportion of Health Boards and Trusts with specific outpatient clinic for 
'young people' with epilepsies in Round 1, Round 2, and Round 3. 
 
 
 
 
Figure 12: Clinics for young people across Rounds 1, Round 2, and Round 3. 
 
60% (71/119) 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). Of those 71 Health 
Boards and Trusts, a mean of 71% of young people were indicated as being transitioned through 
a joint professional process. The process comprised of either: a single joint appointment 49% 
(35/71), several joint appoints 7% (5/71), a mix of joint and individual appointments 34% (24/71) 
or ‘other’ (10% (7/71), (Tables 33 and 34). In the seven Health Boards and Trusts that responded 
‘other’, the responses included: 
• 
Adult and paediatric nurse led clinic, 
• 
Adult epilepsy nurse attends teenage clinics, 
• 
Single joint appointment with paediatric and adult neurologist based at the adult centre, 
• 
Some single joint appointments and some a series, 
• 
Single joint appointment and Transition Clinic for one consultant only, 
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%
0%
20%
40%
60%
80%
100%
Yes
No
Yes
No
Yes
No
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Nov 2020
Percentage of Trusts and Health 
Boards 

 
44 
• 
Joint transition appointment / see 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 and November 2020. 
 
 
Figure 13: Composition of the joint transition process in Round 3, April 2018, November 2019 and 
November 2020. 
Table 35 shows that 66% (79/119) of Health Boards and Trusts, used structured resources (for 
example Ready, Steady, Go) to support transition to adult services. Various professionals were 
indicated as routinely involved in the transition or transfer of paediatric patients to adult services. 
85% (101/119) of the Health Boards and Trusts had an adult neurologist supporting transition to 
adult services, whilst 63% (75/119) had an adult ESN supporting the transition (Table 36).  Other 
responses included: 
 
• 
Adult Learning Disability Consultant, 
• 
Adult Learning Disability Psychiatrist, 
• 
Consultant Psychiatrist, 
• 
GP, 
• 
GP and Adult Neurologist, 
• 
GP with Epilepsy interest, 
61%
6%
24%
9%
54%
9%
28%
9%
49%
7%
34%
10%
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

 
45 
• 
Details of neurology specialist nurse contact and often offer ESN appointment at 
neuro hospital, 
• 
Adult Learning Disability team, 
• 
Adult Learning Disability team/ adult rehab/ GP, 
• 
Discussion with adult neurologist and neurophysiologist in Neurophysiology 
meeting, 
• 
Learning Disability transition nurses, 
• 
Youth worker from an epilepsy charity may attend, 
• 
Specific adolescent transition clinic regionally, locally appointed transition nurse, 
• 
Transition nurses, 
• 
Adult neurologist/Learning Disability consultant involved though not 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 and November 2020. 
 
 
Figure 14: Professionals routinely involved in transition or transfer to adult services in Round 3, 
April 2018, November 2019 and November 2020. 
 
78%
51%
10%
2%
14%
84%
54%
15%
2%
13%
85%
63%
19%
5%
15%
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

 
46 
Figure 15 shows a comparison of Health Boards and Trusts that were using structured resources 
to support transition in Round 3, April 2018, November 2019 and November 2020. 
 
 
 
Figure 15: Percentage of Health Boards and Trusts that were using structured resources to 
support transition in Round 3, April 2018, November 2019 and November 2020. 
 
 
58%
42%
51%
49%
66%
34%
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

 
47 
Table 29: Health Boards and Trusts that had an agreed referral pathway to adult services. 
 
 
Country/network 
 
Yes 
 
No 
England and Wales (N=119) 
86% (102/119) 
14% (17/119) 
England  (N=115) 
85% (98/115) 
15% (17/115) 
Wales (N=4) 
100% (4/4) 
0% (0/4) 
 
 
 
BRPNF  (N=10) 
60% (6/10) 
40% (4/10) 
CEWT  (N=5) 
100% (5/5) 
0% (0/5) 
EPEN  (N=13) 
92% (12/13) 
8% (1/13) 
EPIC  (N=8) 
88% (7/8) 
13% (1/8) 
NTPEN  (N=15) 
80% (12/15) 
20% (3/15) 
NWEIG  (N=7) 
100% (7/7) 
0% (0/7) 
ORENG  (N=7) 
86% (6/7) 
14% (1/7) 
PENNEC  (N=8) 
63% (5/8) 
38% (3/8) 
SETPEG  (N=7) 
86% (6/7) 
14% (1/7) 
SWEP  (N=3) 
100% (3/3) 
0% (0/3) 
SWIPE  (N=9) 
78% (7/9) 
22% (2/9) 
SWTPEG  (N=6) 
100% (6/6) 
0% (0/6) 
TEN  (N=6) 
83% (5/6) 
17% (1/6) 
WPNN  (N=7) 
100% (7/7) 
0% (0/7) 
YPEN  (N=8) 
100% (8/8) 
0% (0/8) 

 
48 
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=119) 
39% (47/119) 
61% (72/119) 
England  (N=115) 
40% (46/115) 
60% (69/115) 
Wales (N=4) 
25% (1/4) 
75% (3/4) 
 
 
 
BRPNF  (N=10) 
40% (4/10) 
60% (6/10) 
CEWT  (N=5) 
60% (3/5) 
40% (2/5) 
EPEN  (N=13) 
69% (9/13) 
31% (4/13) 
EPIC  (N=8) 
25% (2/8) 
75% (6/8) 
NTPEN  (N=15) 
27% (4/15) 
73% (11/15) 
NWEIG  (N=7) 
71% (5/7) 
29% (2/7) 
ORENG  (N=7) 
29% (2/7) 
71% (5/7) 
PENNEC  (N=8) 
13% (1/8) 
88% (7/8) 
SETPEG  (N=7) 
71% (5/7) 
29% (2/7) 
SWEP  (N=3) 
33% (1/3) 
67% (2/3) 
SWIPE  (N=9) 
33% (3/9) 
67% (6/9) 
SWTPEG  (N=6) 
33% (2/6) 
67% (4/6) 
TEN  (N=6) 
33% (2/6) 
67% (4/6) 
WPNN  (N=7) 
57% (4/7) 
43% (3/7) 
YPEN  (N=8) 
0% (0/8) 
100% (8/8) 
 
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=47) 
14.6 
15 
11 
17 
England  (N=46) 
14.6 
14.5 
11 
18 
Wales (N=1) 
16.0 
16 
16 
16 
 
 
 
 
 
BRPNF  (N=4) 
15.5 
16 
14 
16 
CEWT  (N=3) 
13.3 
13 
12 
15 
EPEN  (N=9) 
14.7 
15 
13 
16 
EPIC  (N=2) 
14.0 
14 
14 
14 
NTPEN  (N=4) 
14.0 
14 
12 
16 
NWEIG  (N=5) 
13.2 
14 
12 
14 
ORENG  (N=2) 
16.0 
16 
16 
16 
PENNEC  (N=1) 
14.0 
14 
14 
14 
SETPEG  (N=5) 
15.6 
16 
14 
16 
SWEP  (N=1) 
16.0 
16 
16 
16 
SWIPE  (N=3) 
16.7 
16 
16 
18 
SWTPEG  (N=2) 
14.0 
14 
12 
16 
TEN  (N=2) 
12.5 
12.5 
11 
14 
WPNN  (N=4) 
14.8 
15 
13 
16 
YPEN  (N=0) 
NA 
NA 
NA 
NA 
 
 

 
49 
Table 32: Health Boards and Trusts that had an 
outpatient service involving adult and paediatric 
professionals. 
Country/network 
Yes 
No 
England and 
Wales (N=119) 
60% (71/119) 
40% (48/119) 
England  (N=115) 
59% (68/115) 
41% (47/115) 
Wales (N=4) 
75% (3/4) 
25% (1/4) 
 
 
 
BRPNF  (N=10) 
60% (6/10) 
40% (4/10) 
CEWT  (N=5) 
60% (3/5) 
40% (2/5) 
EPEN  (N=13) 
62% (8/13) 
38% (5/13) 
EPIC  (N=8) 
63% (5/8) 
38% (3/8) 
NTPEN  (N=15) 
60% (9/15) 
40% (6/15) 
NWEIG  (N=7) 
71% (5/7) 
29% (2/7) 
ORENG  (N=7) 
71% (5/7) 
29% (2/7) 
PENNEC  (N=8) 
13% (1/8) 
88% (7/8) 
SETPEG  (N=7) 
57% (4/7) 
43% (3/7) 
SWEP  (N=3) 
67% (2/3) 
33% (1/3) 
SWIPE  (N=9) 
78% (7/9) 
22% (2/9) 
SWTPEG  (N=6) 
83% (5/6) 
17% (1/6) 
TEN  (N=6) 
17% (1/6) 
83% (5/6) 
WPNN  (N=7) 
71% (5/7) 
29% (2/7) 
YPEN  (N=8) 
63% (5/8) 
38% (3/8) 
 
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=71) 
7% (5/71) 
49% (35/71) 
34% (24/71) 
10% (7/71) 
England  (N=68) 
7% (5/68) 
51% (35/68) 
31% (21/68) 
10% (7/68) 
Wales (N=3) 
0% (0/3) 
0% (0/3) 
100% (3/3) 
0% (0/3) 
 
 
 
 
 
BRPNF  (N=6) 
0% (0/6) 
67% (4/6) 
33% (2/6) 
0% (0/6) 
CEWT  (N=3) 
67% (2/3) 
0% (0/3) 
0% (0/3) 
33% (1/3) 
EPEN  (N=8) 
0% (0/8) 
38% (3/8) 
50% (4/8) 
13% (1/8) 
EPIC  (N=5) 
20% (1/5) 
40% (2/5) 
20% (1/5) 
20% (1/5) 
NTPEN  (N=9) 
11% (1/9) 
56% (5/9) 
22% (2/9) 
11% (1/9) 
NWEIG  (N=5) 
0% (0/5) 
80% (4/5) 
20% (1/5) 
0% (0/5) 
ORENG  (N=5) 
0% (0/5) 
60% (3/5) 
40% (2/5) 
0% (0/5) 
PENNEC  (N=1) 
0% (0/1) 
100% (1/1) 
0% (0/1) 
0% (0/1) 
SETPEG  (N=4) 
0% (0/4) 
50% (2/4) 
50% (2/4) 
0% (0/4) 
SWEP  (N=2) 
0% (0/2) 
0% (0/2) 
100% (2/2) 
0% (0/2) 
SWIPE  (N=7) 
0% (0/7) 
29% (2/7) 
71% (5/7) 
0% (0/7) 
SWTPEG  (N=5) 
0% (0/5) 
40% (2/5) 
20% (1/5) 
40% (2/5) 
TEN  (N=1) 
0% (0/1) 
0% (0/1) 
0% (0/1) 
100% (1/1) 
WPNN  (N=5) 
20% (1/5) 
40% (2/5) 
40% (2/5) 
0% (0/5) 
YPEN  (N=5) 
0% (0/5) 
100% (5/5) 
0% (0/5) 
0% (0/5) 
 

 
50 
 
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=71) 
71% 
0% 
100% 
England  (N=68) 
72% 
0% 
100% 
Wales (N=3) 
53% 
30% 
80% 
 
 
 
 
BRPNF  (N=6) 
92% 
75% 
100% 
CEWT  (N=3) 
50% 
30% 
70% 
EPEN  (N=8) 
80% 
1% 
100% 
EPIC  (N=5) 
73% 
5% 
100% 
NTPEN  (N=9) 
63% 
1% 
100% 
NWEIG  (N=5) 
75% 
50% 
100% 
ORENG  (N=5) 
78% 
40% 
100% 
PENNEC  (N=1) 
100% 
100% 
100% 
SETPEG  (N=4) 
60% 
0% 
100% 
SWEP  (N=2) 
40% 
30% 
50% 
SWIPE  (N=7) 
63% 
0% 
90% 
SWTPEG  (N=5) 
86% 
50% 
100% 
TEN  (N=1) 
100% 
100% 
100% 
WPNN  (N=5) 
58% 
25% 
95% 
YPEN  (N=5) 
67% 
30% 
100% 
 
Table 35: Health Boards and Trusts that were using structured 
resources to support transition. 
Country/network 
Yes 
No 
England and 
Wales (N=119) 
66% (79/119) 
34% (40/119) 
England  (N=115) 
69% (79/115) 
31% (36/115) 
Wales (N=4) 
0% (0/4) 
100% (4/4) 
 
 
 
BRPNF  (N=10) 
40% (4/10) 
60% (6/10) 
CEWT  (N=5) 
60% (3/5) 
40% (2/5) 
EPEN  (N=13) 
85% (11/13) 
15% (2/13) 
EPIC  (N=8) 
38% (3/8) 
63% (5/8) 
NTPEN  (N=15) 
53% (8/15) 
47% (7/15) 
NWEIG  (N=7) 
100% (7/7) 
0% (0/7) 
ORENG  (N=7) 
57% (4/7) 
43% (3/7) 
PENNEC  (N=8) 
75% (6/8) 
25% (2/8) 
SETPEG  (N=7) 
57% (4/7) 
43% (3/7) 
SWEP  (N=3) 
0% (0/3) 
100% (3/3) 
SWIPE  (N=9) 
100% (9/9) 
0% (0/9) 
SWTPEG  (N=6) 
83% (5/6) 
17% (1/6) 
TEN  (N=6) 
67% (4/6) 
33% (2/6) 
WPNN  (N=7) 
71% (5/7) 
29% (2/7) 
YPEN  (N=8) 
75% (6/8) 
25% (2/8) 
 

 
51 
 
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=119) 
63% (75/119) 
19% (23/119) 
85% (101/119) 
5% (6/119) 
15% (18/119) 
England  (N=115) 
63% (72/115) 
18% (21/115) 
84% (97/115) 
5% (6/115) 
14% (16/115) 
Wales (N=4) 
75% (3/4) 
50% (2/4) 
100% (4/4) 
0% (0/4) 
50% (2/4) 
 
 
 
 
 
 
BRPNF  (N=10) 
40% (4/10) 
10% (1/10) 
80% (8/10) 
0% (0/10) 
20% (2/10) 
CEWT  (N=5) 
80% (4/5) 
20% (1/5) 
60% (3/5) 
0% (0/5) 
0% (0/5) 
EPEN  (N=13) 
77% (10/13) 
31% (4/13) 
92% (12/13) 
23% (3/13) 
23% (3/13) 
EPIC  (N=8) 
38% (3/8) 
0% (0/8) 
88% (7/8) 
0% (0/8) 
38% (3/8) 
NTPEN  (N=15) 
33% (5/15) 
7% (1/15) 
93% (14/15) 
7% (1/15) 
13% (2/15) 
NWEIG  (N=7) 
71% (5/7) 
0% (0/7) 
71% (5/7) 
0% (0/7) 
0% (0/7) 
ORENG  (N=7) 
86% (6/7) 
57% (4/7) 
100% (7/7) 
14% (1/7) 
29% (2/7) 
PENNEC  (N=8) 
50% (4/8) 
25% (2/8) 
75% (6/8) 
0% (0/8) 
25% (2/8) 
SETPEG  (N=7) 
71% (5/7) 
29% (2/7) 
100% (7/7) 
0% (0/7) 
0% (0/7) 
SWEP  (N=3) 
67% (2/3) 
67% (2/3) 
100% (3/3) 
0% (0/3) 
67% (2/3) 
SWIPE  (N=9) 
89% (8/9) 
33% (3/9) 
67% (6/9) 
0% (0/9) 
11% (1/9) 
SWTPEG  (N=6) 
67% (4/6) 
17% (1/6) 
100% (6/6) 
0% (0/6) 
0% (0/6) 
TEN  (N=6) 
83% (5/6) 
0% (0/6) 
83% (5/6) 
0% (0/6) 
0% (0/6) 
WPNN  (N=7) 
86% (6/7) 
29% (2/7) 
86% (6/7) 
14% (1/7) 
14% (1/7) 
YPEN  (N=8) 
50% (4/8) 
0% (0/8) 
75% (6/8) 
0% (0/8) 
0% (0/8) 

 
52 
Mental health  
 
Three quarters, 75% (89/119) 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 and November 2020. 
 
 
Figure 16: Percentage of Health Boards and Trusts routinely providing formal screening 
services in Round 3, April 2018, November 2019 and November 2020. 
Half of Health Boards and Trusts, 50% (60/119) 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: 
• 
11% (13/119) Connor’s Questionnaire,  
• 
11% (13/119) SDQ (Strength and Difficulties Questionnaire), 
• 
7% (8/119) ‘Other’. 
 
‘Other’ responses included: 
• 
York Questionnaire, Vanderbilt and department behaviour assessment questionnaire, 
• 
Social skills teacher questionnaire 
• 
Wellness questionnaire, 
• 
PI-ED, 
24%
24%
20%
72%
18%
18%
15%
77%
20%
19%
17%
75%
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

 
53 
• 
NICE signs and symptoms of ASD checklist, 
• 
ADOS, 
• 
Locally prepared questionnaire, 
• 
Vanderbilt ADHD. 
 
36% (43/119) of Health Boards and Trusts did not have agreed referral pathways for children with 
mental health conditions. 61% (72/119) of Health Boards and Trusts had agreed referral pathways 
for children with anxiety; 61% (72/119) for depression; 59% (70/119) for mood disorder; 42% 
(50/119) for non-epileptic attack disorder, 6% (7/119) for other mental health conditions (Table 
39).  
 
‘Other’ responses included: 
• 
Attention Deficit Hyperactivity Disorder  
• 
Behavioural and emotional, 
• 
Tic disorders, OCD, eating disorders, 
• 
A flexible approach with in-house mental health and adolescent medicine teams, 
• 
Referral to CAHMS or clinical psychology depending on clinical needs, 
• 
Referral to psychology for difficulty in coping with diagnosis for patient and family, 
• 
Referral to CAMHS for other mental health concerns. 
 
Figure 17 shows the proportion of Health Boards and Trusts that had agreed referral pathways 
for children and young people with mental health conditions, in November 2019 and November 
2020. 
 
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 and November 2020. 
54%
55%
54%
38%
7%
43%
61%
61%
59%
42%
6%
36%
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

 
54 
Table 40 shows that in 15% (18/119) of Health Boards and Trusts mental health provision is 
facilitated within epilepsy clinics. In eleven of those eighteen Health Boards and Trusts this 
mental health provision involved co-located clinical care. In twelve of the eighteen it comprised 
multi-disciplinary team meetings where epilepsy and mental health professionals discussed 
individual patients, (Table 41). 
 
Of the 101 Health Boards and Trusts that were unable to facilitate mental health provision within 
epilepsy clinics only, 11% (11/101) indicated they had an action plan describing steps towards co-
located mental health provision, (Table 42). 
 
7% (8/119) 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). 79% (94/119) of Health Boards 
and Trusts were able to refer to clinical psychology services; 91% (108/119) to psychiatric services; 
49% (58/119) to education psychology; 56% (67/119) to neuropsychology services and 87% 
(103/119) to formal developmental assessment.  
 
Figure 18 shows the comparison of ability to refer to mental health services in Round 3, April 
2018, November 2019 and November 2020 
 
Figure 18: Percentage of Health Boards and Trusts that could refer to mental health services in 
Round 3, April 2018, November 2019 and November 2020.
7%
49%
56%
79%
87%
91%
4%
46%
52%
79%
87%
93%
5%
45%
48%
76%
84%
90%
0%
20%
40%
60%
80%
100%
None
Educational psychology
Neuropsychology
Clinical psychology
Formal developmental
Psychiatric
Percentage of Trusts and Health Boards 
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Apr 2020

 
55 
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=119) 
20% (24/119) 
19% (23/119) 
17% (20/119) 
75% (89/119) 
England  (N=115) 
21% (24/115) 
20% (23/115) 
17% (20/115) 
74% (85/115) 
Wales (N=4) 
0% (0/4) 
0% (0/4) 
0% (0/4) 
100% (4/4) 
 
 
 
 
 
BRPNF  (N=10) 
50% (5/10) 
50% (5/10) 
30% (3/10) 
50% (5/10) 
CEWT  (N=5) 
40% (2/5) 
40% (2/5) 
20% (1/5) 
60% (3/5) 
EPEN  (N=13) 
8% (1/13) 
8% (1/13) 
8% (1/13) 
85% (11/13) 
EPIC  (N=8) 
13% (1/8) 
13% (1/8) 
0% (0/8) 
88% (7/8) 
NTPEN  (N=15) 
20% (3/15) 
13% (2/15) 
20% (3/15) 
73% (11/15) 
NWEIG  (N=7) 
29% (2/7) 
29% (2/7) 
43% (3/7) 
57% (4/7) 
ORENG  (N=7) 
57% (4/7) 
57% (4/7) 
29% (2/7) 
43% (3/7) 
PENNEC  (N=8) 
0% (0/8) 
0% (0/8) 
13% (1/8) 
88% (7/8) 
SETPEG  (N=7) 
14% (1/7) 
14% (1/7) 
14% (1/7) 
86% (6/7) 
SWEP  (N=3) 
0% (0/3) 
0% (0/3) 
0% (0/3) 
100% (3/3) 
SWIPE  (N=9) 
0% (0/9) 
0% (0/9) 
0% (0/9) 
100% (9/9) 
SWTPEG  (N=6) 
17% (1/6) 
17% (1/6) 
33% (2/6) 
67% (4/6) 
TEN  (N=6) 
33% (2/6) 
33% (2/6) 
0% (0/6) 
67% (4/6) 
WPNN  (N=7) 
14% (1/7) 
14% (1/7) 
14% (1/7) 
86% (6/7) 
YPEN  (N=8) 
13% (1/8) 
13% (1/8) 
25% (2/8) 
75% (6/8) 
 
 
 
 

 
56 
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 
Neurologic
al Disorders 
Depression 
Inventory 
for 
Epilepsy 
England and 
Wales (N=119) 
0% (0/119) 
11% (13/119) 
0% (0/119) 
0% (0/119) 
0% (0/119) 
0% (0/119) 
0% (0/119) 
0% (0/119) 
0% (0/119) 
England  (N=115) 
0% (0/115) 
11% (13/115) 
0% (0/115) 
0% (0/115) 
0% (0/115) 
0% (0/115) 
0% (0/115) 
0% (0/115) 
0% (0/115) 
Wales (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) 
 
 
 
 
 
 
 
 
 
 
BRPNF  (N=10) 
0% (0/10) 
20% (2/10) 
0% (0/10) 
0% (0/10) 
0% (0/10) 
0% (0/10) 
0% (0/10) 
0% (0/10) 
0% (0/10) 
CEWT  (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) 
EPEN  (N=13) 
0% (0/13) 
0% (0/13) 
0% (0/13) 
0% (0/13) 
0% (0/13) 
0% (0/13) 
0% (0/13) 
0% (0/13) 
0% (0/13) 
EPIC  (N=8) 
0% (0/8) 
13% (1/8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
NTPEN  (N=15) 
0% (0/15) 
20% (3/15) 
0% (0/15) 
0% (0/15) 
0% (0/15) 
0% (0/15) 
0% (0/15) 
0% (0/15) 
0% (0/15) 
NWEIG  (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) 
ORENG  (N=7) 
0% (0/7) 
43% (3/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
PENNEC  (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) 
SETPEG  (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) 
SWEP  (N=3) 
0% (0/3) 
0% (0/3) 
0% (0/3) 
0% (0/3) 
0% (0/3) 
0% (0/3) 
0% (0/3) 
0% (0/3) 
0% (0/3) 
SWIPE  (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) 
SWTPEG  (N=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) 
0% (0/6) 
TEN  (N=6) 
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) 
WPNN  (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) 
YPEN  (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) 
 
 

 
57 
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=119) 
0% (0/119) 
11% (13/119) 
7% (8/119) 
50% (60/119) 
England  (N=115) 
0% (0/115) 
11% (13/115) 
7% (8/115) 
50% (57/115) 
Wales (N=4) 
0% (0/4) 
0% (0/4) 
0% (0/4) 
75% (3/4) 
 
 
 
 
 
BRPNF  (N=10) 
0% (0/10) 
30% (3/10) 
20% (2/10) 
30% (3/10) 
CEWT  (N=5) 
0% (0/5) 
20% (1/5) 
0% (0/5) 
60% (3/5) 
EPEN  (N=13) 
0% (0/13) 
0% (0/13) 
8% (1/13) 
62% (8/13) 
EPIC  (N=8) 
0% (0/8) 
0% (0/8) 
0% (0/8) 
25% (2/8) 
NTPEN  (N=15) 
0% (0/15) 
20% (3/15) 
7% (1/15) 
33% (5/15) 
NWEIG  (N=7) 
0% (0/7) 
14% (1/7) 
0% (0/7) 
71% (5/7) 
ORENG  (N=7) 
0% (0/7) 
0% (0/7) 
14% (1/7) 
43% (3/7) 
PENNEC  (N=8) 
0% (0/8) 
0% (0/8) 
13% (1/8) 
50% (4/8) 
SETPEG  (N=7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
71% (5/7) 
SWEP  (N=3) 
0% (0/3) 
0% (0/3) 
0% (0/3) 
100% (3/3) 
SWIPE  (N=9) 
0% (0/9) 
0% (0/9) 
0% (0/9) 
67% (6/9) 
SWTPEG  (N=6) 
0% (0/6) 
17% (1/6) 
17% (1/6) 
33% (2/6) 
TEN  (N=6) 
0% (0/6) 
17% (1/6) 
0% (0/6) 
50% (3/6) 
WPNN  (N=7) 
0% (0/7) 
14% (1/7) 
14% (1/7) 
57% (4/7) 
YPEN  (N=8) 
0% (0/8) 
25% (2/8) 
0% (0/8) 
50% (4/8) 

 
58 
 
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=119) 
61% (72/119) 
61% (72/119) 
59% (70/119) 
42% (50/119) 
6% (7/119) 
36% (43/119) 
England  (N=115) 
62% (71/115) 
62% (71/115) 
60% (69/115) 
43% (50/115) 
5% (6/115) 
35% (40/115) 
Wales (N=4) 
25% (1/4) 
25% (1/4) 
25% (1/4) 
0% (0/4) 
25% (1/4) 
75% (3/4) 
 
 
 
 
 
 
 
BRPNF  (N=10) 
70% (7/10) 
70% (7/10) 
70% (7/10) 
40% (4/10) 
0% (0/10) 
30% (3/10) 
CEWT  (N=5) 
80% (4/5) 
80% (4/5) 
80% (4/5) 
40% (2/5) 
20% (1/5) 
20% (1/5) 
EPEN  (N=13) 
54% (7/13) 
54% (7/13) 
54% (7/13) 
38% (5/13) 
0% (0/13) 
38% (5/13) 
EPIC  (N=8) 
75% (6/8) 
75% (6/8) 
75% (6/8) 
63% (5/8) 
25% (2/8) 
25% (2/8) 
NTPEN  (N=15) 
53% (8/15) 
53% (8/15) 
53% (8/15) 
47% (7/15) 
13% (2/15) 
40% (6/15) 
NWEIG  (N=7) 
100% (7/7) 
100% (7/7) 
100% (7/7) 
57% (4/7) 
0% (0/7) 
0% (0/7) 
ORENG  (N=7) 
29% (2/7) 
29% (2/7) 
29% (2/7) 
14% (1/7) 
0% (0/7) 
71% (5/7) 
PENNEC  (N=8) 
75% (6/8) 
75% (6/8) 
75% (6/8) 
38% (3/8) 
25% (2/8) 
13% (1/8) 
SETPEG  (N=7) 
71% (5/7) 
71% (5/7) 
57% (4/7) 
57% (4/7) 
0% (0/7) 
29% (2/7) 
SWEP  (N=3) 
0% (0/3) 
0% (0/3) 
0% (0/3) 
0% (0/3) 
0% (0/3) 
100% (3/3) 
SWIPE  (N=9) 
33% (3/9) 
33% (3/9) 
33% (3/9) 
22% (2/9) 
0% (0/9) 
67% (6/9) 
SWTPEG  (N=6) 
83% (5/6) 
83% (5/6) 
83% (5/6) 
50% (3/6) 
0% (0/6) 
17% (1/6) 
TEN  (N=6) 
67% (4/6) 
67% (4/6) 
50% (3/6) 
50% (3/6) 
0% (0/6) 
33% (2/6) 
WPNN  (N=7) 
57% (4/7) 
57% (4/7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
43% (3/7) 
YPEN  (N=8) 
50% (4/8) 
50% (4/8) 
50% (4/8) 
50% (4/8) 
0% (0/8) 
38% (3/8) 

 
59 
Table 40: Health Boards and Trusts that were facilitating 
mental health provision within epilepsy clinics. 
Country/network 
Yes 
No 
England and Wales 
(N=119) 
15% (18/119) 
85% (101/119) 
England  (N=115) 
16% (18/115) 
84% (97/115) 
Wales (N=4) 
0% (0/4) 
100% (4/4) 
 
 
 
BRPNF  (N=10) 
0% (0/10) 
100% (10/10) 
CEWT  (N=5) 
0% (0/5) 
100% (5/5) 
EPEN  (N=13) 
15% (2/13) 
85% (11/13) 
EPIC  (N=8) 
25% (2/8) 
75% (6/8) 
NTPEN  (N=15) 
27% (4/15) 
73% (11/15) 
NWEIG  (N=7) 
14% (1/7) 
86% (6/7) 
ORENG  (N=7) 
0% (0/7) 
100% (7/7) 
PENNEC  (N=8) 
13% (1/8) 
88% (7/8) 
SETPEG  (N=7) 
29% (2/7) 
71% (5/7) 
SWEP  (N=3) 
0% (0/3) 
100% (3/3) 
SWIPE  (N=9) 
11% (1/9) 
89% (8/9) 
SWTPEG  (N=6) 
33% (2/6) 
67% (4/6) 
TEN  (N=6) 
17% (1/6) 
83% (5/6) 
WPNN  (N=7) 
14% (1/7) 
86% (6/7) 
YPEN  (N=8) 
13% (1/8) 
88% (7/8) 
 
 
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=119) 
9% (11/119) 
10% (12/119) 
7% (8/119) 
England  (N=115) 
10% (11/115) 
10% (12/115) 
7% (8/115) 
Wales (N=4) 
0% (0/4) 
0% (0/4) 
0% (0/4) 
 
 
 
 
BRPNF  (N=10) 
0% (0/10) 
0% (0/10) 
0% (0/10) 
CEWT  (N=5) 
0% (0/5) 
0% (0/5) 
0% (0/5) 
EPEN  (N=13) 
15% (2/13) 
15% (2/13) 
8% (1/13) 
EPIC  (N=8) 
13% (1/8) 
13% (1/8) 
13% (1/8) 
NTPEN  (N=15) 
7% (1/15) 
13% (2/15) 
13% (2/15) 
NWEIG  (N=7) 
14% (1/7) 
14% (1/7) 
14% (1/7) 
ORENG  (N=7) 
0% (0/7) 
0% (0/7) 
0% (0/7) 
PENNEC  (N=8) 
13% (1/8) 
13% (1/8) 
0% (0/8) 
SETPEG  (N=7) 
29% (2/7) 
14% (1/7) 
14% (1/7) 
SWEP  (N=3) 
0% (0/3) 
0% (0/3) 
0% (0/3) 
SWIPE  (N=9) 
0% (0/9) 
11% (1/9) 
0% (0/9) 
SWTPEG  (N=6) 
33% (2/6) 
17% (1/6) 
17% (1/6) 
TEN  (N=6) 
0% (0/6) 
0% (0/6) 
17% (1/6) 
WPNN  (N=7) 
14% (1/7) 
14% (1/7) 
0% (0/7) 
YPEN  (N=8) 
0% (0/8) 
13% (1/8) 
0% (0/8) 
 

 
60 
 
 
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=101) 
11% (11/101) 
89% (90/101) 
England  (N=97) 
11% (11/97) 
89% (86/97) 
Wales (N=4) 
0% (0/4) 
100% (4/4) 
 
 
 
BRPNF  (N=10) 
20% (2/10) 
80% (8/10) 
CEWT  (N=5) 
40% (2/5) 
60% (3/5) 
EPEN  (N=11) 
0% (0/11) 
100% (11/11) 
EPIC  (N=6) 
17% (1/6) 
83% (5/6) 
NTPEN  (N=11) 
0% (0/11) 
100% (11/11) 
NWEIG  (N=6) 
0% (0/6) 
100% (6/6) 
ORENG  (N=7) 
0% (0/7) 
100% (7/7) 
PENNEC  (N=7) 
14% (1/7) 
86% (6/7) 
SETPEG  (N=5) 
20% (1/5) 
80% (4/5) 
SWEP  (N=3) 
0% (0/3) 
100% (3/3) 
SWIPE  (N=8) 
13% (1/8) 
88% (7/8) 
SWTPEG  (N=4) 
0% (0/4) 
100% (4/4) 
TEN  (N=5) 
20% (1/5) 
80% (4/5) 
WPNN  (N=6) 
17% (1/6) 
83% (5/6) 
YPEN  (N=7) 
14% (1/7) 
86% (6/7) 

 
61 
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=119) 
79% (94/119) 
91% (108/119) 
49% (58/119) 
56% (67/119) 
87% (103/119) 
7% (8/119) 
England  (N=115) 
79% (91/115) 
90% (104/115) 
48% (55/115) 
58% (67/115) 
86% (99/115) 
7% (8/115) 
Wales (N=4) 
75% (3/4) 
100% (4/4) 
75% (3/4) 
0% (0/4) 
100% (4/4) 
0% (0/4) 
 
 
 
 
 
 
 
BRPNF  (N=10) 
90% (9/10) 
100% (10/10) 
60% (6/10) 
40% (4/10) 
90% (9/10) 
0% (0/10) 
CEWT  (N=5) 
80% (4/5) 
80% (4/5) 
20% (1/5) 
80% (4/5) 
80% (4/5) 
20% (1/5) 
EPEN  (N=13) 
69% (9/13) 
85% (11/13) 
62% (8/13) 
31% (4/13) 
85% (11/13) 
15% (2/13) 
EPIC  (N=8) 
63% (5/8) 
100% (8/8) 
25% (2/8) 
50% (4/8) 
100% (8/8) 
0% (0/8) 
NTPEN  (N=15) 
93% (14/15) 
100% (15/15) 
40% (6/15) 
73% (11/15) 
100% (15/15) 
0% (0/15) 
NWEIG  (N=7) 
100% (7/7) 
100% (7/7) 
57% (4/7) 
86% (6/7) 
71% (5/7) 
0% (0/7) 
ORENG  (N=7) 
86% (6/7) 
100% (7/7) 
57% (4/7) 
71% (5/7) 
86% (6/7) 
0% (0/7) 
PENNEC  (N=8) 
88% (7/8) 
88% (7/8) 
88% (7/8) 
75% (6/8) 
88% (7/8) 
0% (0/8) 
SETPEG  (N=7) 
100% (7/7) 
86% (6/7) 
71% (5/7) 
71% (5/7) 
100% (7/7) 
0% (0/7) 
SWEP  (N=3) 
67% (2/3) 
100% (3/3) 
67% (2/3) 
0% (0/3) 
100% (3/3) 
0% (0/3) 
SWIPE  (N=9) 
89% (8/9) 
89% (8/9) 
56% (5/9) 
89% (8/9) 
78% (7/9) 
11% (1/9) 
SWTPEG  (N=6) 
33% (2/6) 
67% (4/6) 
17% (1/6) 
33% (2/6) 
67% (4/6) 
33% (2/6) 
TEN  (N=6) 
50% (3/6) 
50% (3/6) 
17% (1/6) 
50% (3/6) 
67% (4/6) 
33% (2/6) 
WPNN  (N=7) 
71% (5/7) 
100% (7/7) 
43% (3/7) 
29% (2/7) 
100% (7/7) 
0% (0/7) 
YPEN  (N=8) 
75% (6/8) 
100% (8/8) 
38% (3/8) 
38% (3/8) 
75% (6/8) 
0% (0/8) 

 
62 
Neurodevelopmental support 
In 13% (15/119) of Health Boards and Trusts, there were no agreed referral criteria for children and 
young people with neurodevelopmental conditions. 80% (95/119) had agreed referral criteria for 
children with ADHD; 85% (101/119) for ASD; 60% (71/119) for behaviour difficulties; 62% (74/119) for 
developmental coordination disorder; 56% (67/119) for intellectual disability and 8% (10/119) for 
other neurodevelopmental problems. (Table 44/ Figure 19).  
‘Other’ responses included: 
• 
Challenging behaviour associated with severe learning difficulties, 
• 
Global developmental delay, 
• 
CP, development delay, neuromuscular, 
• 
Referral is to community paediatric service who will direct referral to appropriate pathway, 
• 
Conditions details are not seen within our Health Board 
• 
Early Health Assessment pathway, 
• 
ADHD, ASD and developmental concern pathways are with Separate Health Board, 
• 
No agreed criteria however we have referral pathway to CAHMS and psychology, 
• 
Developmental delay. 
 
 
Figure 19:  Percentage of Health Boards and Trusts that had agreed referral criteria for children 
and young people with neurodevelopmental conditions services in November 2019 and November 
2020. 
13%
8%
56%
62%
60%
85%
80%
16%
6%
49%
56%
55%
81%
77%
0%
20%
40%
60%
80%
None
Other
Intellectual disability
Developmental cordination disorder
Behaviour difficulties
ASD
ADHD
Percentage of Trusts and Health Boards 
Round 3
Nov 2019
Round 3
Nov 2020

 
63 
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=119) 
80% 
(95/119) 
85% 
(101/119) 
60% 
(71/119) 
62% (74/119) 
56% 
(67/119) 
8% 
(10/119) 
13% 
(15/119) 
England  
(N=115) 
79% 
(91/115) 
84% 
(97/115) 
60% 
(69/115) 
62% (71/115) 
56% 
(64/115) 
9% 
(10/115) 
13% 
(15/115) 
Wales (N=4) 
100% (4/4) 
100% 
(4/4) 
50% (2/4) 
75% (3/4) 
75% (3/4) 
0% (0/4) 
0% (0/4) 
 
 
 
 
 
 
 
 
BRPNF  (N=10) 
90% 
(9/10) 
100% 
(10/10) 
90% 
(9/10) 
100% (10/10) 
90% 
(9/10) 
0% 
(0/10) 
0% (0/10) 
CEWT  (N=5) 
100% (5/5) 
100% 
(5/5) 
80% (4/5) 
80% (4/5) 
80% (4/5) 
20% 
(1/5) 
0% (0/5) 
EPEN  (N=13) 
69% (9/13) 
77% 
(10/13) 
54% (7/13) 
54% (7/13) 
31% (4/13) 
8% (1/13) 
15% (2/13) 
EPIC  (N=8) 
88% (7/8) 
88% (7/8) 
75% (6/8) 
50% (4/8) 
63% (5/8) 
13% (1/8) 
13% (1/8) 
NTPEN  (N=15) 
60% (9/15) 
73% 
(11/15) 
60% 
(9/15) 
47% (7/15) 
53% (8/15) 
7% (1/15) 
27% 
(4/15) 
NWEIG  (N=7) 
100% (7/7) 
100% 
(7/7) 
71% (5/7) 
100% (7/7) 
100% (7/7) 
0% (0/7) 
0% (0/7) 
ORENG  (N=7) 
71% (5/7) 
86% (6/7) 
29% (2/7) 
43% (3/7) 
29% (2/7) 
0% (0/7) 
14% (1/7) 
PENNEC  (N=8) 
75% (6/8) 
75% (6/8) 
63% (5/8) 
50% (4/8) 
63% (5/8) 
13% (1/8) 
13% (1/8) 
SETPEG  (N=7) 
71% (5/7) 
86% (6/7) 
71% (5/7) 
71% (5/7) 
57% (4/7) 
0% (0/7) 
14% (1/7) 
SWEP  (N=3) 
100% (3/3) 
100% 
(3/3) 
67% (2/3) 
67% (2/3) 
100% (3/3) 
0% (0/3) 
0% (0/3) 
SWIPE  (N=9) 
78% (7/9) 
78% (7/9) 
33% (3/9) 
44% (4/9) 
22% (2/9) 
22% 
(2/9) 
11% (1/9) 
SWTPEG  (N=6) 
83% (5/6) 
83% (5/6) 
50% (3/6) 
50% (3/6) 
67% (4/6) 
0% (0/6) 
17% (1/6) 
TEN  (N=6) 
100% 
(6/6) 
100% 
(6/6) 
83% (5/6) 
100% (6/6) 
67% (4/6) 
0% (0/6) 
0% (0/6) 
WPNN  (N=7) 
71% (5/7) 
71% (5/7) 
57% (4/7) 
43% (3/7) 
43% (3/7) 
29% 
(2/7) 
29% (2/7) 
YPEN  (N=8) 
88% (7/8) 
88% (7/8) 
25% (2/8) 
63% (5/8) 
38% (3/8) 
13% (1/8) 
13% (1/8) 
 
 
 
 
 

 
64 
Care planning 
Comprehensive care planning for children and young people with epilepsy was reported to 
routinely take place in 90% (107/119) of Health Boards and Trusts, (Table 45). 
Figure 20 shows the proportion of Health Boards and Trusts that routinely undertake 
comprehensive care planning for children and young people with epilepsy in Round 3, April 2018, 
November 2019 and November 2020. 
 
 
Figure 20: Health Boards and Trusts that routinely undertake comprehensive care planning for 
children and young people with epilepsy in Round 3 April 2018, November 2019 and November 
2020. 
 
 
 
 
 
 
77%
23%
80%
20%
90%
10%
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

 
65 
 
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=119) 
90% (107/119) 
10% (12/119) 
England  (N=115) 
90% (103/115) 
10% (12/115) 
Wales (N=4) 
100% (4/4) 
0% (0/4) 
 
 
 
BRPNF  (N=10) 
90% (9/10) 
10% (1/10) 
CEWT  (N=5) 
100% (5/5) 
0% (0/5) 
EPEN  (N=13) 
92% (12/13) 
8% (1/13) 
EPIC  (N=8) 
100% (8/8) 
0% (0/8) 
NTPEN  (N=15) 
87% (13/15) 
13% (2/15) 
NWEIG  (N=7) 
100% (7/7) 
0% (0/7) 
ORENG  (N=7) 
71% (5/7) 
29% (2/7) 
PENNEC  (N=8) 
63% (5/8) 
38% (3/8) 
SETPEG  (N=7) 
100% (7/7) 
0% (0/7) 
SWEP  (N=3) 
100% (3/3) 
0% (0/3) 
SWIPE  (N=9) 
67% (6/9) 
33% (3/9) 
SWTPEG  (N=6) 
100% (6/6) 
0% (0/6) 
TEN  (N=6) 
100% (6/6) 
0% (0/6) 
WPNN  (N=7) 
100% (7/7) 
0% (0/7) 
YPEN  (N=8) 
100% (8/8) 
0% (0/8) 
 
 
 
 

 
66 
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. Of these, 34% 
(41/119) maintain a registry for all children and young people with epilepsies and 42% (50/119) 
maintain a database or registry for some children and young people with epilepsies. 24% (28/119) 
of Health Boards and Trusts, reported that they do not maintain a database or registry, (Table 46).  
Figure 21 shows the proportion of Health Boards and Trusts maintaining a database or register of 
children and young people with epilepsies, other than Epilepsy12, in Round 3, April 2018, November 
2019 and November 2020. 
 
 
Figure 21:  Percentage of Health Boards and Trusts maintaining/not maintaining a database or 
registry of children and young people with epilepsies, other than Epilepsy12, in Round 3 April 2018, 
November 2019 and November 2020. 
 
 
29%
39%
32%
34%
40%
27%
34%
42%
24%
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

 
67 
 
 
Table 46: Health Boards and Trusts maintaining a database or registry of children and young 
people with epilepsies, other than Epilepsy12. 
Country/network 
Yes, all 
Yes, some 
No 
England and Wales 
(N=119) 
34% (41/119) 
42% (50/119) 
24% (28/119) 
England  (N=115) 
36% (41/115) 
41% (47/115) 
23% (27/115) 
Wales (N=4) 
0% (0/4) 
75% (3/4) 
25% (1/4) 
 
 
 
 
BRPNF  (N=10) 
20% (2/10) 
30% (3/10) 
50% (5/10) 
CEWT  (N=5) 
0% (0/5) 
20% (1/5) 
80% (4/5) 
EPEN  (N=13) 
38% (5/13) 
46% (6/13) 
15% (2/13) 
EPIC  (N=8) 
13% (1/8) 
50% (4/8) 
38% (3/8) 
NTPEN  (N=15) 
27% (4/15) 
53% (8/15) 
20% (3/15) 
NWEIG  (N=7) 
43% (3/7) 
57% (4/7) 
0% (0/7) 
ORENG  (N=7) 
29% (2/7) 
43% (3/7) 
29% (2/7) 
PENNEC  (N=8) 
50% (4/8) 
25% (2/8) 
25% (2/8) 
SETPEG  (N=7) 
71% (5/7) 
29% (2/7) 
0% (0/7) 
SWEP  (N=3) 
0% (0/3) 
67% (2/3) 
33% (1/3) 
SWIPE  (N=9) 
33% (3/9) 
44% (4/9) 
22% (2/9) 
SWTPEG  (N=6) 
50% (3/6) 
33% (2/6) 
17% (1/6) 
TEN  (N=6) 
33% (2/6) 
33% (2/6) 
33% (2/6) 
WPNN  (N=7) 
57% (4/7) 
43% (3/7) 
0% (0/7) 
YPEN  (N=8) 
38% (3/8) 
50% (4/8) 
13% (1/8) 

  
68 
Findings by OPEN UK regional networks 
% of Health Boards and Trusts employing a consultant paediatrician with expertise in 
epilepsy. 
 
80%
87%
97%
100%
100%
100%
100%
100%
100%
100%
100%
100%
100%
100%
100%
100%
0%
20%
40%
60%
80%
100%
Children's Epilepsy Workstream in Trent
North Thames Paediatric Epilepsy Network
England and Wales combined
Birmingham Regional Paediatric Neurology
Forum
Eastern Paediatric Epilepsy Network
Mersey and North Wales network 'Epilepsy In
Childhood' interest group
North West Children and Young People's
Epilepsy Interest Group
Oxford region epilepsy interest group
Paediatric Epilepsy Network for the North East
and Cumbria
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

  
69 
% of Health Boards and Trusts that had a defined paediatric epilepsy clinical lead.  
 
 
71%
75%
87%
88%
90%
93%
100%
100%
100%
100%
100%
100%
100%
100%
100%
100%
0%
20%
40%
60%
80%
100%
South East Thames Paediatric Epilepsy Group
Yorkshire Paediatric Neurology Network
North Thames Paediatric Epilepsy Network
Paediatric Epilepsy Network for the North East
and Cumbria
Birmingham Regional Paediatric Neurology
Forum
England and Wales combined
Children's Epilepsy Workstream in Trent
Eastern Paediatric Epilepsy Network
Mersey and North Wales network 'Epilepsy In
Childhood' interest group
North West Children and Young People's
Epilepsy Interest Group
Oxford region epilepsy interest group
South Wales Epilepsy Forum
South West Interest Group Paediatric Epilepsy
South West Thames Paediatric Epilepsy Group
Trent Epilepsy Network
Wessex Paediatric Neurosciences Network

  
70 
% of Health Boards and Trusts who had some epilepsy specialist nurse (ESN) provision 
within their paediatric service. 
 
67%
70%
71%
75%
80%
87%
89%
89%
92%
100%
100%
100%
100%
100%
100%
100%
0%
20%
40%
60%
80%
100%
South Wales Epilepsy Forum
Birmingham Regional Paediatric Neurology
Forum
Oxford region epilepsy interest group
Paediatric Epilepsy Network for the North East
and Cumbria
Children's Epilepsy Workstream in Trent
North Thames Paediatric Epilepsy Network
England and Wales combined
South West Interest Group Paediatric Epilepsy
Eastern Paediatric Epilepsy Network
Mersey and North Wales network 'Epilepsy In
Childhood' interest group
North West Children and Young People's
Epilepsy Interest Group
South East Thames Paediatric Epilepsy Group
South West Thames Paediatric Epilepsy Group
Trent Epilepsy Network
Wessex Paediatric Neurosciences Network
Yorkshire Paediatric Neurology Network

  
71 
% of Health Boards Trusts that indicated that they could offer ESN support for rescue 
medication training for parents. 
 
 
 
67%
70%
71%
75%
80%
80%
86%
87%
89%
92%
100%
100%
100%
100%
100%
100%
0%
20%
40%
60%
80%
100%
South Wales Epilepsy Forum
Birmingham Regional Paediatric Neurology
Forum
Oxford region epilepsy interest group
Paediatric Epilepsy Network for the North East
and Cumbria
Children's Epilepsy Workstream in Trent
North Thames Paediatric Epilepsy Network
Wessex Paediatric Neurosciences Network
England and Wales combined
South West Interest Group Paediatric Epilepsy
Eastern Paediatric Epilepsy Network
Mersey and North Wales network 'Epilepsy In
Childhood' interest group
North West Children and Young People's
Epilepsy Interest Group
South East Thames Paediatric Epilepsy Group
South West Thames Paediatric Epilepsy Group
Trent Epilepsy Network
Yorkshire Paediatric Neurology Network

  
72 
% of Health Boards and Trusts that had a defined epilepsy clinic seeing patients at 
secondary level. 
 
 
78%
80%
87%
88%
92%
93%
100%
100%
100%
100%
100%
100%
100%
100%
100%
100%
0%
20%
40%
60%
80%
100%
South West Interest Group Paediatric Epilepsy
Birmingham Regional Paediatric Neurology
Forum
North Thames Paediatric Epilepsy Network
Yorkshire Paediatric Neurology Network
Eastern Paediatric Epilepsy Network
England and Wales combined
Children's Epilepsy Workstream in Trent
Mersey and North Wales network 'Epilepsy In
Childhood' interest group
North West Children and Young People's
Epilepsy Interest Group
Oxford region epilepsy interest group
Paediatric Epilepsy Network for the North East
and Cumbria
South East Thames Paediatric Epilepsy Group
South Wales Epilepsy Forum
South West Thames Paediatric Epilepsy Group
Trent Epilepsy Network
Wessex Paediatric Neurosciences Network

  
73 
% of Trusts in England that currently run Epilepsy Best Practice Criteria (BPC) clinics. 
 
 
 
27%
29%
30%
43%
43%
43%
49%
50%
54%
56%
60%
63%
67%
71%
83%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
North Thames Paediatric Epilepsy Network
North West Children and Young People's
Epilepsy Interest Group
Birmingham Regional Paediatric Neurology
Forum
Mersey and North Wales network 'Epilepsy In
Childhood' interest group
Oxford region epilepsy interest group
South East Thames Paediatric Epilepsy Group
England only
Paediatric Epilepsy Network for the North East
and Cumbria
Eastern Paediatric Epilepsy Network
South West Interest Group Paediatric Epilepsy
Children's Epilepsy Workstream in Trent
Yorkshire Paediatric Neurology Network
Trent Epilepsy Network
Wessex Paediatric Neurosciences Network
South West Thames Paediatric Epilepsy Group

  
74 
% 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)). 
 
 
 
 
 
 
 
 
 
8%
10%
11%
13%
14%
14%
17%
20%
25%
25%
27%
29%
29%
33%
33%
40%
0%
20%
40%
60%
80%
100%
Eastern Paediatric Epilepsy Network
Birmingham Regional Paediatric Neurology
Forum
South West Interest Group Paediatric Epilepsy
Mersey and North Wales network 'Epilepsy In
Childhood' interest group
Oxford region epilepsy interest group
Wessex Paediatric Neurosciences Network
South West Thames Paediatric Epilepsy Group
England and Wales combined
Paediatric Epilepsy Network for the North East
and Cumbria
Yorkshire Paediatric Neurology Network
North Thames Paediatric Epilepsy Network
North West Children and Young People's
Epilepsy Interest Group
South East Thames Paediatric Epilepsy Group
South Wales Epilepsy Forum
Trent Epilepsy Network
Children's Epilepsy Workstream in Trent

  
75 
% of Health Boards and Trusts that had agreed referral pathways to tertiary paediatric 
neurology services. 
  
67%
80%
86%
88%
88%
95%
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
North West Children and Young People's
Epilepsy Interest Group
Paediatric Epilepsy Network for the North East
and Cumbria
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
Childhood' interest group
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

  
76 
% 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%
7%
10%
13%
13%
14%
14%
15%
17%
22%
25%
40%
43%
44%
57%
67%
0%
20%
40%
60%
80%
100%
South West Thames Paediatric Epilepsy Group
North Thames Paediatric Epilepsy Network
Birmingham Regional Paediatric Neurology
Forum
Mersey and North Wales network 'Epilepsy In
Childhood' interest group
Yorkshire Paediatric Neurology Network
Oxford region epilepsy interest group
Wessex Paediatric Neurosciences Network
Eastern Paediatric Epilepsy Network
Trent Epilepsy Network
England and Wales combined
Paediatric Epilepsy Network for the North East
and Cumbria
Children's Epilepsy Workstream in Trent
North West Children and Young People's
Epilepsy Interest Group
South West Interest Group Paediatric Epilepsy
South East Thames Paediatric Epilepsy Group
South Wales Epilepsy Forum

  
77 
% of Health Boards and Trusts that could provide specialist advice between scheduled 
reviews every weekday for 52 weeks per year. 
 
 
 
17%
33%
33%
38%
40%
43%
50%
53%
54%
57%
67%
71%
75%
86%
88%
100%
0%
20%
40%
60%
80%
100%
South West Thames Paediatric Epilepsy Group
South West Interest Group Paediatric Epilepsy
Trent Epilepsy Network
Paediatric Epilepsy Network for the North East
and Cumbria
Birmingham Regional Paediatric Neurology
Forum
South East Thames Paediatric Epilepsy Group
England and Wales combined
North Thames Paediatric Epilepsy Network
Eastern Paediatric Epilepsy Network
Wessex Paediatric Neurosciences Network
South Wales Epilepsy Forum
Oxford region epilepsy interest group
Yorkshire Paediatric Neurology Network
North West Children and Young People's
Epilepsy Interest Group
Mersey and North Wales network 'Epilepsy In
Childhood' interest group
Children's Epilepsy Workstream in Trent

  
78 
% of Health Boards and Trusts that have evidence of a clear point of contact for non-
paediatric professionals seeking paediatric epilepsy support.  
 
 
 
 
 
 
 
 
 
60%
60%
63%
71%
71%
78%
83%
83%
88%
88%
92%
93%
100%
100%
100%
100%
0%
20%
40%
60%
80%
100%
Birmingham Regional Paediatric Neurology
Forum
Children's Epilepsy Workstream in Trent
Paediatric Epilepsy Network for the North East
and Cumbria
Oxford region epilepsy interest group
Wessex Paediatric Neurosciences Network
South West Interest Group Paediatric Epilepsy
England and Wales combined
Trent Epilepsy Network
Mersey and North Wales network 'Epilepsy In
Childhood' interest group
Yorkshire Paediatric Neurology Network
Eastern Paediatric Epilepsy Network
North Thames Paediatric Epilepsy Network
North West Children and Young People's
Epilepsy Interest Group
South East Thames Paediatric Epilepsy Group
South Wales Epilepsy Forum
South West Thames Paediatric Epilepsy Group

  
79 
% of Health Boards and Trusts that have agreed referral pathway to adult services.  
 
 
  
 
60%
63%
78%
80%
83%
86%
86%
86%
88%
92%
100%
100%
100%
100%
100%
100%
0%
20%
40%
60%
80%
100%
Birmingham Regional Paediatric Neurology
Forum
Paediatric Epilepsy Network for the North East
and Cumbria
South West Interest Group Paediatric Epilepsy
North Thames Paediatric Epilepsy Network
Trent Epilepsy Network
England and Wales combined
Oxford region epilepsy interest group
South East Thames Paediatric Epilepsy Group
Mersey and North Wales network 'Epilepsy In
Childhood' interest group
Eastern Paediatric Epilepsy Network
Children's Epilepsy Workstream in Trent
North West Children and Young People's
Epilepsy Interest Group
South Wales Epilepsy Forum
South West Thames Paediatric Epilepsy Group
Wessex Paediatric Neurosciences Network
Yorkshire Paediatric Neurology Network

  
80 
% of Health Boards and Trusts that have an outpatient clinic specifically for young 
people with epilepsies. 
 
 
 
 
 
 
 
0%
13%
25%
27%
29%
33%
33%
33%
33%
39%
40%
57%
60%
69%
71%
71%
0%
20%
40%
60%
80%
100%
Yorkshire Paediatric Neurology Network
Paediatric Epilepsy Network for the North East
and Cumbria
Mersey and North Wales network 'Epilepsy In
Childhood' interest group
North Thames Paediatric Epilepsy Network
Oxford region epilepsy interest group
South Wales Epilepsy Forum
South West Interest Group Paediatric Epilepsy
South West Thames Paediatric Epilepsy Group
Trent Epilepsy Network
England and Wales combined
Birmingham Regional Paediatric Neurology
Forum
Wessex Paediatric Neurosciences Network
Children's Epilepsy Workstream in Trent
Eastern Paediatric Epilepsy Network
North West Children and Young People's
Epilepsy Interest Group
South East Thames Paediatric Epilepsy Group

  
81 
% of Health Boards and Trusts that have an outpatient epilepsy service involving adult 
and paediatric professionals. 
 
 
 
 
 
13%
17%
57%
60%
60%
60%
60%
62%
63%
63%
67%
71%
71%
71%
78%
83%
0%
20%
40%
60%
80%
100%
Paediatric Epilepsy Network for the North East
and Cumbria
Trent Epilepsy Network
South East Thames Paediatric Epilepsy Group
England and Wales combined
Birmingham Regional Paediatric Neurology
Forum
Children's Epilepsy Workstream in Trent
North Thames Paediatric Epilepsy Network
Eastern Paediatric Epilepsy Network
Mersey and North Wales network 'Epilepsy In
Childhood' interest group
Yorkshire Paediatric Neurology Network
South Wales Epilepsy Forum
North West Children and Young People's
Epilepsy Interest Group
Oxford region epilepsy interest group
Wessex Paediatric Neurosciences Network
South West Interest Group Paediatric Epilepsy
South West Thames Paediatric Epilepsy Group

  
82 
% of Health Boards and Trusts that have structured resources to support Young People 
transition. 
 
 
 
 
 
 
 
 
0%
38%
40%
53%
57%
57%
60%
66%
67%
71%
75%
75%
83%
85%
100%
100%
0%
20%
40%
60%
80%
100%
South Wales Epilepsy Forum
Mersey and North Wales network 'Epilepsy In
Childhood' interest group
Birmingham Regional Paediatric Neurology
Forum
North Thames Paediatric Epilepsy Network
Oxford region epilepsy interest group
South East Thames Paediatric Epilepsy Group
Children's Epilepsy Workstream in Trent
England and Wales combined
Trent Epilepsy Network
Wessex Paediatric Neurosciences Network
Paediatric Epilepsy Network for the North East
and Cumbria
Yorkshire Paediatric Neurology Network
South West Thames Paediatric Epilepsy Group
Eastern Paediatric Epilepsy Network
North West Children and Young People's
Epilepsy Interest Group
South West Interest Group Paediatric Epilepsy

  
83 
% of Health Boards and Trusts that facilitate mental health provision within epilepsy 
clinics. 
 
 
 
0%
0%
0%
0%
8%
13%
14%
14%
17%
20%
20%
25%
29%
30%
33%
43%
0%
20%
40%
60%
80%
100%
Mersey and North Wales network 'Epilepsy In
Childhood' interest group
South Wales Epilepsy Forum
South West Interest Group Paediatric Epilepsy
Trent Epilepsy Network
Eastern Paediatric Epilepsy Network
Paediatric Epilepsy Network for the North East
and Cumbria
South East Thames Paediatric Epilepsy Group
Wessex Paediatric Neurosciences Network
England and Wales combined
Children's Epilepsy Workstream in Trent
North Thames Paediatric Epilepsy Network
Yorkshire Paediatric Neurology Network
Oxford region epilepsy interest group
Birmingham Regional Paediatric Neurology
Forum
South West Thames Paediatric Epilepsy Group
North West Children and Young People's
Epilepsy Interest Group

  
84 
% of Health Boards and Trusts that routinely undertook comprehensive care planning for 
children with epilepsy. 
 
 
 
 
 
 
 
 
63%
67%
71%
87%
90%
90%
92%
100%
100%
100%
100%
100%
100%
100%
100%
100%
0%
20%
40%
60%
80%
100%
Paediatric Epilepsy Network for the North East
and Cumbria
South West Interest Group Paediatric Epilepsy
Oxford region epilepsy interest group
North Thames Paediatric Epilepsy Network
England and Wales combined
Birmingham Regional Paediatric Neurology
Forum
Eastern Paediatric Epilepsy Network
Children's Epilepsy Workstream in Trent
Mersey and North Wales network 'Epilepsy In
Childhood' interest group
North West Children and Young People's
Epilepsy Interest Group
South East Thames Paediatric Epilepsy Group
South Wales Epilepsy Forum
South West Thames Paediatric Epilepsy Group
Trent Epilepsy Network
Wessex Paediatric Neurosciences Network
Yorkshire Paediatric Neurology Network

  
85 
% of Health Boards and Trusts that maintain a database or register for all the children 
with epilepsies 
 
 
 
 
 
 
 
 
 
0%
0%
13%
20%
27%
29%
33%
33%
34%
38%
38%
43%
50%
50%
57%
71%
0%
20%
40%
60%
80%
100%
Children's Epilepsy Workstream in Trent
South Wales Epilepsy Forum
Mersey and North Wales network 'Epilepsy In
Childhood' interest group
Birmingham Regional Paediatric Neurology
Forum
North Thames Paediatric Epilepsy Network
Oxford region epilepsy interest group
South West Interest Group Paediatric Epilepsy
Trent Epilepsy Network
England and Wales combined
Eastern Paediatric Epilepsy Network
Yorkshire Paediatric Neurology Network
North West Children and Young People's
Epilepsy Interest Group
Paediatric Epilepsy Network for the North East
and Cumbria
South West Thames Paediatric Epilepsy Group
Wessex Paediatric Neurosciences Network
South East Thames Paediatric Epilepsy Group

  
86 
List of Organisational data figures & 
tables 
Tables 
Table 8: Epilepsy12 Round 3 2020 Organisational Audit participation by paediatric 
epilepsy networks and by country. - page 5 
Table 9: Whole time equivalent (WTE) general paediatric consultants, community or 
hospital based, employed within Health Boards and Trusts.  – page 7 
Table 10: Whole time equivalent (WTE) general paediatric consultants with 'expertise in 
epilepsy’, excluding paediatric neurologists, employed within Health Boards and Trusts. – 
page 7 
Table 11: Health Boards and Trusts that employed at least some level of whole time 
equivalent (WTE) consultant paediatrician with 'expertise in epilepsy’. – page 8 
Table 12: Health Boards and Trusts that had a defined paediatric epilepsy clinical lead. – 
page 8 
Table 13: Whole time equivalent (WTE) epilepsy specialist nurses employed within Health 
Boards and Trusts. – page 11 
Table 14: Health Boards and Trusts that employed at least some level of whole time 
equivalent (WTE) epilepsy specialist nurse. – page 11 
Table 8: Health Boards and Trusts that could support epilepsy nurse functions (n=119). – 
page 12 
 
Table 8 (continued): Health Boards and Trusts that could support epilepsy nurse 
functions (n=119). – page 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 
(n=106). – page 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 (n=106). – page 15 
 
Table 10: Health Boards and Trusts that had a defined epilepsy clinic. – page 17 
Table 11: Number of consultant or associate specialist led secondary level 'epilepsy 
clinics' taking place within Health Boards and Trusts per week. – page 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. – page 19 
Table 13: Trusts that were running TFC 223 Epilepsy Best Practice Criteria (BPC) clinics. – 
page 21 

  
87 
Table 14: Whole time equivalent (WTE) paediatric neurologists, acutely and/or non-
acutely, employed within Health Boards or Trusts. – page 23 
Table 15: Health Boards and Trusts that employed at least some level of whole time 
equivalent (WTE) paediatric neurologists, acutely and/or non-acutely. – page 23 
Table 16: Health Boards and Trusts with agreed referral pathways to tertiary paediatric 
neurology services. – page 24 
Table 17a: Health Boards and Trusts that could receive paediatric neurological direct 
referrals from general practice and emergency departments. – page 24 
Table 17b: Health Boards and Trusts that could receive paediatric neurological direct 
referrals from general practice and emergency departments (excl. N/A). – page 25 
Table 18: Health Boards and Trusts that were hosting satellite paediatric neurology 
clinics. – page 25 
Table 19: Health Boards and Trusts that could facilitate the commencement of a 
ketogenic diet.  – page 27 
Table 20: Health Boards and Trusts that could undertake ongoing review of a ketogenic 
diet.  – page 27 
Table 21: Health Boards and Trusts that were able to insert vagal nerve stimulator. – 
page 28 
Table 22: Health Boards and Trusts that were able to review vagal nerve stimulator. – 
page 28 
Table 23: Health Boards and Trusts that could provide epilepsy investigation services. – 
page 30 
 
Table 23 (continued): Health Boards and Trusts that could provide epilepsy investigation 
services. – page 31 
 
Table 23 (continued): Health Boards and Trusts that could provide epilepsy investigation 
services. – page 32 
 
Table 23 (continued): Health Boards and Trusts that could provide epilepsy investigation 
services. – page 33 
 
Table 23 (continued): Health Boards and Trusts that could provide epilepsy investigation 
services. – page 34 
 
Table 24: Health Boards and Trusts providing specialist advice between scheduled 
reviews. – page 38 
 
Table 25: Availability of Health Boards and Trusts between scheduled reviews. – page 39 
 
Table 26: Typical response time to specialist advice. – page 40 
 
Table 27: Professional who ‘typically’ provides initial specialist advice. – page 41 
 
Table 28: Health Boards and Trusts with evidence of a clear point of contact for 
non-paediatric professionals seeking paediatric epilepsy support. – page 42 
 

  
88 
Table 29: Health Boards and Trusts that had an agreed referral pathway to adult 
services. – page 47 
 
Table 30: Health Boards and Trusts that had an outpatient clinic specifically for young 
people with epilepsies. – page 48 
 
Table 31: Age at which the outpatient clinic typically accepted young people with 
epilepsies – page 48 
Table 32: Health Boards and Trusts that had an outpatient service involving adult and 
paediatric professionals. – page 49 
Table 33: Structure of outpatient service involving both adult and paediatric professionals. 
– page 49 
Table 34: Estimated percentage of young people transferred to adult services through a 
joint professional process. – page 50 
Table 35: Health Boards and Trusts that were using structured resources to support 
transition. – page 50 
Table 36: Adult professionals routinely involved in transition or transfer to adult services. – 
page 51 
Table 37: Health Boards and Trusts that formally screen for any of the listed conditions 
related to epilepsy. – page 55 
Table 38: Health Boards and Trusts using particular mental health screening 
questionnaires. – page 56 
 
Table 38 (continued): Health Boards and Trusts using particular mental health screening 
questionnaires. – page 57 
 
Table 39: Health Boards and Trusts with agreed referral pathways for children and young 
people with mental health conditions. – page 58 
 
Table 40: Health Boards and Trusts that were facilitating mental health provision within 
epilepsy clinics. – page 59 
Table 41: Composition of mental health provision within epilepsy clinics. – page 59 
Table 42: Health Boards and Trusts that had an action plan describing steps towards co-
located mental health provision. – page 59 
Table 43: Health Boards and Trusts that could refer to mental health services. – page 61 
Table 44: Health Boards and Trusts that had agreed referral criteria for children and 
young people with neuro-developmental conditions. – page 63 
Table 45: Health Boards and Trusts that routinely undertake comprehensive care 
planning for children and young people with epilepsy. – page 65 
Table 46: Health Boards and Trusts maintaining a database or register of children and 
young people with epilepsies, other than Epilepsy12. – page 67 
 
 

  
89 
Figures 
 
Figure 3: 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 and Round 3 November 2020.  - page 6 
Figure 4: Mean Whole Time Equivalent epilepsy specialist nurses employed in England 
and Wales in Round 1, Round 2, Round 3 April 2018, November 2019 and November 2020. 
– page 9 
 
Figure 3: Percentage of Health Boards and Trusts that could support epilepsy specialist 
nurse functions in Round 3 April 2018, November 2019 and November 2020. – page 10 
 
Figure 4: Mean of consultant or associate specialist led secondary level epilepsy clinics in 
Round 1, Round 2, Round 3 April 2018, November 2019 and November 2020. – page 16 
Figure 5: Percentage of Trusts receiving TFC 223 Epilepsy Best Practice Criteria (England 
only) (n=115). - page 20 
Figure 6: Percentage of Health Boards and Trusts that could provide ketogenic diet and 
vagal nerve stimulator services in Round 3 April 2018, November 2019 and November 
2020. - page 26 
Figure 7: Percentage of Health Boards and Trusts that could provide investigation 
services in Round 3 April 2018, November 2019 and November 2020. – page 29 
Figure 8:  Percentage availability of specialist advice between scheduled reviews in 
Round 3 April 2018, November 2019 and November 2020. – page 35 
Figure 9: Typical response time for specialist advice in Round 3 April 2018, November 
2019 and November 2020. – paper 36 
Figure 10: Professional who ‘typically’ provides initial specialist advice in Round 3 April 
2018, November 2019 and November 2020. – page 37 
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 and 
November 2020. – page 37 
Figure 12: Clinics for young people across Rounds 1, Round 2, Round 3 April 2018, Round 3 
November 2019 and November 2020. - page 43 
 
Figure 13: Composition of the joint transition process in Round 3 April 2018, November 
2019 and November 2020. – page 43 
Figure 14: Professionals routinely involved in transition or transfer to adult services in 
Round 3 April 2018, November 2019 and November 2020. – page 45 
Figure 15: Percentage of Health Boards and Trusts that were using structured resources 
to support transition in Round 3 April 2018, November 2019 and November 2020. – page 
46 

  
90 
Figure 16: Percentage of Health Boards and Trusts routinely providing formal screening 
services in Round 3 April 2018, November 2019 and November 2020. – page 52 
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 and 
November 2020. – page 53 
Figure 18: Percentage of Health Boards and Trusts that could refer to mental health 
services in Round 3 April 2018, November 2019 and November 2020. – page 54 
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 and November 2020. - page 62 
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 and November 2020. – page 64 
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 and November 2020. – page 68 
 
Organisational findings by OPEN UK regional networks figures 
 
% of Health Boards and Trusts employing a consultant paediatrician with expertise in 
epilepsy. – page 68 
% of Health Boards and Trusts that had a defined paediatric epilepsy clinical lead. – page 
69 
% of Health Boards and Trusts who had some epilepsy specialist nurse (ESN) provision 
within their paediatric service. – page 70 
% of Health Boards Trusts that indicated that they could offer ESN support for rescue 
medication training for parents. – page 71 
% of Health Boards and Trusts that had a defined epilepsy clinic seeing patients at 
secondary level. – page 72 
% of Trusts in England that currently run Epilepsy Best Practice Criteria (BPC) clinics. – 
page 73 
% 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)). – page 74 
% of Health Boards and Trusts that had agreed referral pathways to tertiary paediatric 
neurology services. – page 75 
% of Health Boards and Trusts that were able to facilitate Vagal Nerve Stimulation (VNS) 
review at a location within the Health Board or Trust. – page 76 

  
91 
% of Health Boards and Trusts that could provide specialist advice between scheduled 
reviews every weekday for 52 weeks per year. – page 77 
% of Health Boards and Trusts that have evidence of a clear point of contact for non-
paediatric professionals seeking paediatric epilepsy support.  – page 78 
% of Health Boards and Trusts that have agreed referral pathway to adult services.  – 
page 79 
% of Health Boards and Trusts that have an outpatient clinic specifically for young people 
with epilepsies. – page 80 
% of Health Boards and Trusts that have an outpatient epilepsy service involving adult 
and paediatric professionals. – page 81 
% of Health Boards and Trusts that have structured resources to support Young People 
transition. – page 82 
% of Health Boards and Trusts that facilitate mental health provision within epilepsy 
clinics. – page 83 
% of Health Boards and Trusts that routinely undertook comprehensive care planning for 
children with epilepsy. – page 84 
% of Health Boards and Trusts that maintain a database or register for all the children 
with epilepsies. – page 85 
 
 
 
 
 
 
 
 

  
92 
Data completeness 
The Epilepsy12 project team originally identified 163 Health Boards and Trusts (acute, 
community and tertiary) with paediatric services across England and Wales in August 
2017 as potentially eligible to participate in Round 3 of Epilepsy12. This was based on 
information from the 2017 British Association for Community Child Health (BACCH) and 
Royal College of Paediatrics and Child Health (RCPCH) publication “Covering all bases - 
Community Child Health: A paediatric workforce guide”.  
Of the 163, one Health Board in Wales did not register and five acute Trusts in England 
were no longer eligible due to mergers. Nine of the remaining 157 were community 
Trusts which were excluded because they either had no paediatric services, or they 
defined their paediatric service as not assessing or managing children with seizures or 
epilepsies.  
As of November 2020 there were 145 registered Health Boards and Trusts in Epilepsy12. 
This was originally 148, however the number has reduced following mergers. Of these, 119 
Health Boards and Trusts were able to submit and lock their November 2020 
organisational audit data. The data were provided to Epilepsy12 between November 
2020 and February 2021.  This report presents organisational data describing the services 
as they were in November 2020. At this time the NHS were dealing with a significant 
surge in COVID-19 cases and hospitalisations in both England and Wales.   
 
 
 

  
93 
The following list shows the NHS Health Boards and Trusts across England and Wales 
that submitted data to the Epilepsy12 Round 3 2020 organisational audit. 
 
Birmingham Regional Paediatric Neurology Forum (BRPNF) 
Birmingham Community Healthcare NHS Foundation Trust 
Coventry and Warwickshire Partnership NHS Trust  
Sandwell and West Birmingham Hospitals NHS Trust 
South Warwickshire NHS Foundation Trust 
The Dudley Group NHS Foundation Trust 
The Royal Wolverhampton NHS Trust 
University Hospitals Coventry and Warwickshire NHS Trust 
Worcestershire Acute Hospitals NHS Trust 
Worcestershire Health and Care NHS Trust 
Wye Valley NHS Trust 
Children's Epilepsy Workstream in Trent (CEWT) 
Nottingham University Hospitals NHS Trust 
Sherwood Forest Hospitals NHS Foundation Trust 
United Lincolnshire Hospitals NHS Trust 
University Hospitals of Derby and Burton NHS Foundation Trust 
University Hospitals of Leicester NHS Trust 
Eastern Paediatric Epilepsy Network (EPEN) 
Bedford Hospital NHS Trust 
Cambridge University Hospitals NHS Foundation Trust 
East and North Hertfordshire NHS Trust 
East Suffolk and North Essex NHS Foundation Trust 
James Paget University Hospitals NHS Foundation Trust 
Luton and Dunstable University Hospital NHS Foundation Trust 
Mid Essex Hospital Services NHS Trust 
Norfolk and Norwich University Hospitals NHS Foundation Trust 
Norfolk Community Health and Care NHS Trust 
North West Anglia NHS Foundation Trust 
The Princess Alexandra Hospital NHS Trust 
The Queen Elizabeth Hospital, King's Lynn, NHS Foundation Trust 
West Suffolk NHS Foundation Trust 
Mersey and North Wales network 'Epilepsy In Childhood' interest group (EPIC) 
Alder Hey Children's NHS Foundation Trust 
Betsi Cadwaladr University LHB 

  
94 
Countess of Chester Hospital NHS Foundation Trust 
Shrewsbury and Telford Hospital NHS Trust 
Southport and Ormskirk Hospital NHS Trust 
St Helens and Knowsley Hospitals NHS Trust 
Warrington and Halton Hospitals NHS Foundation Trust 
Wirral University Teaching Hospital NHS Foundation Trust 
North Thames Paediatric Epilepsy Network (NTPEN) 
Barking, Havering and Redbridge University Hospitals NHS Trust 
Barts Health NHS Trust 
Central and North West London NHS Foundation Trust 
Chelsea and Westminster Hospital NHS Foundation Trust 
Great Ormond Street Hospital For Children NHS Foundation Trust 
Homerton University Hospital NHS Foundation Trust 
Imperial College Healthcare NHS Trust 
London North West Healthcare NHS Trust 
North Middlesex University Hospital NHS Trust 
Royal Free London NHS Foundation Trust 
Southend University Hospital NHS Foundation Trust 
The Hillingdon Hospitals NHS Foundation Trust 
The Whittington Hospital NHS Trust 
University College London Hospitals NHS Foundation Trust 
West Hertfordshire Hospitals NHS Trust 
North West Children and Young People's Epilepsy Interest Group (NWEIG) 
Blackpool Teaching Hospitals NHS Foundation Trust 
Bolton NHS Foundation Trust 
Lancashire Teaching Hospitals NHS Foundation Trust 
Manchester University NHS Foundation Trust 
Northern Care Alliance NHS Group 
Tameside and Glossop Integrated Care NHS Foundation Trust 
Wrightington, Wigan and Leigh NHS Foundation Trust 
Oxford region epilepsy interest group (ORENG) 
Buckinghamshire Healthcare NHS Trust 
Great Western Hospitals NHS Foundation Trust 
Kettering General Hospital NHS Foundation Trust 
Milton Keynes University Hospital NHS Foundation Trust 
Northampton General Hospital NHS Trust 
Oxford University Hospitals NHS Foundation Trust 

  
95 
Royal Berkshire NHS Foundation Trust 
Paediatric Epilepsy Network for the North East and Cumbria (PENNEC) 
County Durham and Darlington NHS Foundation Trust 
Gateshead Health NHS Foundation Trust 
North Cumbria Integrated Care NHS Foundation Trust 
North Tees and Hartlepool NHS Foundation Trust 
Northumbria Healthcare NHS Foundation Trust 
South Tees Hospitals NHS Foundation Trust 
South Tyneside and Sunderland NHS Foundation Trust 
The Newcastle Upon Tyne Hospitals NHS Foundation Trust 
South East Thames Paediatric Epilepsy Group (SETPEG) 
Dartford and Gravesham NHS Trust 
East Sussex Healthcare NHS Trust 
Guy's and St Thomas' NHS Foundation Trust 
King's College Hospital NHS Foundation Trust 
Lewisham and Greenwich NHS Trust 
Maidstone and Tunbridge Wells NHS Trust 
Sussex Community NHS Foundation Trust 
South Wales Epilepsy Forum (SWEP) 
Cwm Taf LHB 
Hywel Dda LHB 
Swansea Bay UHB 
South West Interest Group Paediatric Epilepsy (SWIPE) 
Gloucestershire Hospitals NHS Foundation Trust 
Northern Devon Healthcare NHS Trust 
Royal Cornwall Hospitals NHS Trust 
Royal Devon and Exeter NHS Foundation Trust 
Royal United Hospitals Bath NHS Foundation Trust 
Somerset NHS Foundation Trust 
Torbay and South Devon NHS Foundation Trust 
University Hospitals Bristol NHS Foundation Trust 
Yeovil District Hospital NHS Foundation Trust 
South West Thames Paediatric Epilepsy Group (SWTPEG) 
Ashford and St Peter's Hospitals NHS Foundation Trust 
Epsom and St Helier University Hospitals NHS Trust 
Frimley Health NHS Foundation Trust 
Kingston Hospital NHS Foundation Trust 

  
96 
Royal Surrey County Hospital NHS Foundation Trust 
St George's University Hospitals NHS Foundation Trust 
Trent Epilepsy Network (TEN) 
Barnsley Hospital NHS Foundation Trust 
Chesterfield Royal Hospital NHS Foundation Trust 
Doncaster and Bassetlaw Teaching Hospitals Foundation Trust 
Northern Lincolnshire and Goole NHS Foundation Trust 
Sheffield Children's NHS Foundation Trust 
The Rotherham NHS Foundation Trust 
Wessex Paediatric Neurosciences Network (WPNN) 
Dorset County Hospital NHS Foundation Trust 
Hampshire Hospitals NHS Foundation Trust 
Poole Hospital NHS Foundation Trust 
Portsmouth Hospitals NHS Trust 
Salisbury NHS Foundation Trust 
Solent NHS Trust 
University Hospital Southampton NHS Foundation Trust 
Yorkshire Paediatric Neurology Network (YPEN) 
Airedale NHS Foundation Trust 
Bradford Teaching Hospitals NHS Foundation Trust 
Calderdale and Huddersfield NHS Foundation Trust 
Harrogate and District NHS Foundation Trust 
Leeds Community Healthcare NHS Trust 
Leeds Teaching Hospitals NHS Trust 
Mid Yorkshire Hospitals NHS Trust 
York Teaching Hospital NHS Foundation Trust 
 
 
 

  
97 
The following Trusts merged prior to the November 2020 organisational audit. 
Merged Trust title 
Regional 
Network  
Before Trusts merged 
East Suffolk and North 
Essex NHS Foundation Trust 
EPEN 
Colchester Hospital University NHS 
Foundation Trust 
Ipswich Hospital NHS Trust 
Northern care Alliance NHS 
Group 
NWEIG 
Salford Royal NHS Foundation Trust 
Northern Care Alliance NHS Group 
South Tyneside and 
Sunderland NHS Foundation 
Trust 
PENNEC 
City Hospitals Sunderland NHS Foundation 
Trust 
South Tyneside NHS Foundation Trust 
University Hospitals of 
Derby and Burton NHS 
Foundation Trust 
CEWT 
Derby Teaching Hospitals NHS Foundation 
Trust 
Burton Hospitals NHS Foundation Trust 
Somerset NHS Foundation 
Trust 
SWIPE 
Taunton and Somerset NHS Foundation 
Trust 
Somerset Partnership NHS Foundation 
Trust 
Swansea Bay UHB 
SWEP 
Abertawe Bro Morgannwg University 
Health Board 
 
 
 

  
98 
The following Health Boards and Trusts were not included within the 2020 
organisational audit results due to data that was either not submitted in time, or not 
‘locked’ (a form of verification). 
Health Board or Trust 
Regional Network 
Aneurin Bevan LHB+ 
SWEP 
Basildon and Thurrock University Hospitals NHS Foundation 
Trust+ 
NTPEN 
Birmingham Women's and Children's NHS Foundation Trust+ 
BRPNF 
Brighton and Sussex University Hospitals NHS Trust+ 
SETPEG 
Cambridgeshire Community Services NHS Trust+ 
EPEN 
Cardiff & Vale University LHB+* 
SWEP 
Croydon Health Services NHS Trust+ 
SWTPEG 
East Cheshire NHS Trust 
NWEIG 
East Kent: QEQM, Margate and WHM, Ashford, Kent 
SETPEG 
East Lancashire Hospitals NHS Trust 
NWEIG 
George Eliot Hospital NHS Trust+ 
BRPNF 
Hull and East Yorkshire Hospitals NHS Trust 
YPEN 
Isle of Wight NHS Trust 
WPNN 
Leicestershire Partnership NHS Trust+* 
CEWT 
Medway NHS Foundation Trust+ 
SETPEG 
Mid Cheshire Hospitals NHS Foundation Trust+ 
EPIC 
North East London NHS Foundation Trust+* 
NTPEN 
Plymouth Hospitals NHS Trust+* 
SWIPE 
Stockport NHS Foundation Trust 
NWEIG 
Surrey and Sussex Healthcare NHS Trust+* 
SWTPEG 
University Hospitals Birmingham NHS Foundation Trust+ 
BRPNF 
University Hospitals of Morecambe Bay NHS Foundation Trust 
NWEIG 
University Hospitals of North Midlands NHS Trust+ 
NWEIG 
Walsall Healthcare NHS Trust 
BRPNF 
Western Sussex Hospitals NHS Foundation Trust 
WPNN 
Weston Area Health NHS Trust+ 
SWIPE 
 
+Trusts or Health Boards that were not included within the 2019/20 cohort 2, clinical audit results due to data 
that was either not submitted in time, or not ‘locked’ (a form of verification). 
*Trusts or Health Boards were not included within the 2019 organisational audit results due to data that was 
either not submitted in time, or not ‘locked’ (a form of verification). 

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