Appendix A - Epilepsy12 2019 organisational audit report
Source: data.gov.uk (2020-10-02)

Epilepsy12 2020 National organisational and clinical audits - combined report on 2019 data. This is the first formal release of Round 3 clinical audit data for cohort 1 and the second publication of paediatric epilepsy services organisational data of the Epilepsy12 audit. This is a combined report of the organisational and clinical audits.

Epilepsy12, the UK collaborative clinical audit of health care for children and young people with suspected epileptic seizures is a national clinical audit delivered by the Royal College of Paediatrics and Child Health. It is commissioned by the Healthcare Quality Improvement Partnership (HQIP) and funded by NHS England and the Welsh Government. Round 3 began on 1 April 2017 as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP).

The results are of the organisation of paediatric epilepsy services for children and young people in England and Wales as described at November 2019, and the standard of clinical care provided by services that focuses on patients with a new diagnosis of epilepsy between 12 July 2018 – 30 November 2018 for cohort 1.

These data should not be interpreted without referring to the combined reports summary and Appendices A&G that contain the reports' full results. which is available at: https://www.rcpch.ac.uk/resources/epilepsy12-national-organisational-audit-clinical-audit-2019

Appendix: Epilepsy12 2019 full Organisational audit results 
 
 1 
 

Appendix: Epilepsy12 2019 full Organisational audit results 
 
 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 1 
(2018-19)  
The Healthcare Quality Improvement Partnership (HQIP) is led by a consortium of the Academy 
of Medical Royal Colleges, the Royal College of Nursing and National Voices. Its aim is to 
promote quality improvement in patient outcomes, and in particular, to increase the impact that 
clinical audit, outcome review programmes and registries have on healthcare quality in England 
and Wales. HQIP holds the contract to commission, manage and develop the National Clinical 
Audit and Patient Outcomes Programme (NCAPOP), comprising around 40 projects covering 
care provided to people with a wide range of medical, surgical and mental health conditions. 
The programme is funded by NHS England, the Welsh Government and, with some individual 
projects, other devolved administrations and crown dependencies. www.hqip.org.uk/national-
programmes 
 
 
 
 
 
 
 
 
 
 
 
© 2020 Healthcare Quality Improvement Partnership (HQIP) 
Published by RCPCH September 2020. 
The Royal College of Paediatrics and Child Health is a registered charity in England and Wales (1057744) and in Scotland 
(SCO38299). 
 

Appendix: Epilepsy12 2019 full Organisational audit results 
 
 3 
Appendices 
 
The Epilepsy12 combined report for 2020 includes a description of key findings, 
recommendations, quality improvement activities, and patient involvement in 
Epilepsy12. It is available to download from Epilepsy12. 
Appendix: Full Epilepsy12 clinical audit results for Round 3, Cohort 1 includes the 
publication of the clinical performance results and outcomes captured from Health 
Boards and Trusts with England and Wales. It is available to download from Epilepsy12. 
 
Appendix A: Full Epilepsy12 Round 3 2019 organisational audit results  
Appendix B: Organisational findings by OPEN UK regional networks 
Appendix C: List of organisational data figures & tables  
Appendix D: Participating Health Boards and Trusts by OPEN UK region 
Appendix E: Data completeness 
Appendix F: Useful resources 
 
 
 
 
 
 
 
 
 
 
 
 5 
73 
91 
95 
100 
101 
 
 
 
 

Appendix: Epilepsy12 2019 full Organisational audit results 
 
 4 
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 

Appendix: Epilepsy12 2019 full Organisational audit results 
 
 5 
Appendix A: Full Epilepsy12 Round 3 
2019 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). 
Paediatric epilepsy network names are abbreviated in the following tables of results and figures. 
The full names of the networks can be found on page 4 of this report.  
Participation 
Table 1 provides a breakdown of Epilepsy12 Round 3, 2019 Organisational audit participation by 
Paediatric Epilepsy Networks and by country. 
• 
During the 2019 organisational audit, there were merges in eight Trusts in England, 
which resulted in four combined Trusts. 
• 
There are 145 registered Health Boards and Trusts in Round 3 of Epilepsy12 (149 prior to 
the Trust merges). 
• 
136 out of 145 (93.8%) registered Health Boards and Trusts submitted and locked 2019 
Organisational audit data.  
 
 
 

Appendix: Epilepsy12 2019 full Organisational audit results 
 
 6 
Table 1: Epilepsy12 Round 3 2019 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 2019 
organisational audit data 
England &Wales 
145 
93.8% (136/145) 
England 
139 
94.2% (131/139) 
Wales 
6 
83.3% (5/6) 
  
BRPNF  
14 
92.9% (13/14) 
CEWT  
6 
83.3% (5/6) 
EPEN  
14 
100% (14/14) 
EPIC  
9 
100% (9/9) 
NTPEN  
17 
94.1% (16/17) 
NWEIG  
12 
100% (12/12) 
ORENG  
7 
100% (7/7) 
PENNEC  
8 
100% (8/8) 
SETPEG  
11 
72.7% (8/11) 
SWEP  
5 
80.0% (4/5) 
SWIPE  
11 
81.8% (9/11) 
SWTPEG  
7 
100% (7/7) 
TEN  
6 
100% (6/6) 
WPNN  
9 
100% (9/9) 
YPEN  
9 
100% (9/9) 
 
Workforce 
Consultant paediatrician 
 
The total whole time equivalent (WTE) for general paediatric consultants employed across 
England and Wales was 2146, (Table 2). There was a total of 308.7 whole time equivalent (WTE) 
paediatric consultants with 'expertise in epilepsy' employed across England and Wales; this 
represented 14.4% (308.7/2146) of the total WTE general paediatric (consultant or associate 
specialist) reported workforce, (Table 3). 93.4% (127/136) of Health Boards and Trusts did employ 
a consultant paediatrician with 'expertise in epilepsy', this ranged from 0.6 WTE to 12 WTE, 
(Table 4).  11.8% (16/136) of Health Boards and Trusts did not have a defined paediatric epilepsy 
clinical lead, (Table 5).   
 
Figure 1 shows a comparison of the total whole time equivalent consultant paediatrician with 
expertise in epilepsy employed across England and Wales in Round 1, Round 2, Round 3 April 
2018 and Round 3 November 2019.  

Appendix: Epilepsy12 2019 full Organisational audit results 
 
 7 
 
 
 
Figure 1: Total whole time equivalent consultant paediatrician with ‘expertise in epilepsy’ employed in 
England and Wales in Round 1, Round 2, Round 3 April 2018 and Round 3 November 2019. 
302.9
302.2
316.4
308.7
0
50
100
150
200
250
300
350
400
Round 1
Nov 2009
Round 2
Jan 2014
Round 3
Apr 2018
Round 3
Nov 2019
Total Whole Time Equivalent (WTE) 

Appendix: Epilepsy12 2019 full Organisational audit results 
 
 8 
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=136) 
2146.0 
15.8 
England (N=131) 
2016.1 
15.4 
Wales (N=5) 
129.9 
26.0 
BRPNF (N=13) 
186.1 
14.3 
CEWT (N=5) 
114.7 
22.9 
EPEN (N=14) 
182.9 
13.1 
EPIC (N=9) 
116.1 
12.9 
NTPEN (N=16) 
266.8 
16.7 
NWEIG (N=12) 
227.0 
18.9 
ORENG (N=7) 
113.3 
16.2 
PENNEC (N=8) 
141.0 
17.6 
SETPEG (N=8) 
130.8 
16.3 
SWEP (N=4) 
98.9 
24.7 
SWIPE (N=9) 
107.3 
11.9 
SWTPEG (N=7) 
131.9 
18.8 
TEN (N=6) 
75.4 
12.6 
WPNN (N=9) 
113.9 
12.7 
YPEN (N=9) 
140.0 
15.6 
 
 
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=136) 
308.7 
2.3 
0.0 
12.0 
14.4% (308.7/2146.0) 
England (N=131) 
290.7 
2.2 
0.0 
12.0 
14.4% (290.7/2016.1) 
Wales (N=5) 
18.0 
3.6 
2.0 
9.0 
13.9% (18/129.9) 
 
 
 
 
 
 
BRPNF (N=13) 
23.6 
1.8 
0.0 
4.5 
12.7% (23.6/186.1) 
CEWT (N=5) 
13.5 
2.7 
0.0 
7.0 
11.8% (13.5/114.7) 
EPEN (N=14) 
23.8 
1.7 
0.0 
4.0 
13.0% (23.8/182.9) 
EPIC (N=9) 
24.5 
2.7 
0.0 
9.0 
21.1% (24.5/116.1) 
NTPEN (N=16) 
48.4 
3.0 
0.0 
12.0 
18.1% (48.4/266.8) 
NWEIG (N=12) 
23.5 
2.0 
1.0 
5.0 
10.3% (23.5/227.0) 
ORENG (N=7) 
13.5 
1.9 
1.0 
5.0 
11.9% (13.5/113.3) 
PENNEC (N=8) 
28.5 
3.6 
1.0 
9.0 
20.2% (28.5/141.0) 
SETPEG (N=8) 
17.4 
2.2 
1.0 
3.9 
13.3% (17.4/130.8) 
SWEP (N=4) 
9.0 
2.3 
2.0 
3.0 
9.1% (9.0/98.9) 
SWIPE (N=9) 
16.5 
1.8 
0.8 
4.0 
15.3% (16.5/107.3) 
SWTPEG (N=7) 
12.1 
1.7 
0.0 
2.8 
9.2% (12.1/131.9) 
TEN (N=6) 
12.8 
2.1 
1.8 
3.0 
17.0% (12.8/75.4) 
WPNN (N=9) 
17.0 
1.9 
0.0 
3.8 
14.9% (17.0/113.9) 
YPEN (N=9) 
 
24.8 
2.8 
1.0 
11.2 
17.7% (24.8/140.0) 

Appendix: Epilepsy12 2019 full Organisational audit results 
 
 9 
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=136) 
93.4% (127/136) 
6.6% (9/136) 
0.6 - 12.0 
England (N=131) 
93.1% (122/131) 
6.9% (9/131) 
0.6 - 12.0 
Wales (N=5) 
100% (5/5) 
0.0% (0/5) 
2.0 - 9.0 
 
 
 
 
BRPNF (N=13) 
92.3% (12/13) 
7.7% (1/13) 
1.0 - 4.5 
CEWT (N=5) 
60.0% (3/5) 
40.0% (2/5) 
2.0 - 7.0 
EPEN (N=14) 
92.9% (13/14) 
7.1% (1/14) 
0.6 - 4.0 
EPIC (N=9) 
88.9% (8/9) 
11.1% (1/9) 
1.0 - 9.0 
NTPEN (N=16) 
87.5% (14/16) 
12.5% (2/16) 
1.0 -12.0 
NWEIG (N=12) 
100% (12/12) 
0.0% (0/12) 
1.0 - 5.0 
ORENG (N=7) 
100% (7/7) 
0.0% (0/7) 
1.0 -5.0 
PENNEC (N=8) 
100% (8/8) 
0.0% (0/8) 
1.0 - 9.0 
SETPEG (N=8) 
100% (8/8) 
0.0% (0/8) 
1.0 -3.9 
SWEP (N=4) 
100% (4/4) 
0.0% (0/4) 
2.0 -3.0 
SWIPE (N=9) 
100% (9/9) 
0.0% (0/9) 
0.8 - 4.0 
SWTPEG (N=7) 
85.7% (6/7) 
14.3% (1/7) 
1.0 - 2.8 
TEN (N=6) 
100% (6/6) 
0.0% (0/6) 
1.8 - 3.0 
WPNN (N=9) 
88.9% (8/9) 
11.1% (1/9) 
1.0 - 3.8 
YPEN (N=9) 
100% (9/9) 
0.0% (0/9) 
1.0 - 11.2 
 
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=136) 
88.2% (120/136) 
11.8% (16/136) 
England (N=131) 
88.5% (116/131) 
11.5% (15/131) 
Wales (N=5) 
80.0% (4/5) 
20.0% (1/5) 
 
 
 
BRPNF (N=13) 
84.6% (11/13) 
15.4% (2/13) 
CEWT (N=5) 
80.0% (4/5) 
20.0% (1/5) 
EPEN (N=14) 
92.9% (13/14) 
7.1% (1/14) 
EPIC (N=9) 
100% (9/9) 
0.0% (0/9) 
NTPEN (N=16) 
87.5% (14/16) 
12.5% (2/16) 
NWEIG (N=12) 
100% (12/12) 
0.0% (0/12) 
ORENG (N=7) 
100% (7/7) 
0.0% (0/7) 
PENNEC (N=8) 
100% (8/8) 
0.0% (0/8) 
SETPEG (N=8) 
50.0% (4/8) 
50.0% (4/8) 
SWEP (N=4) 
75.0% (3/4) 
25.0% (1/4) 
SWIPE (N=9) 
88.9% (8/9) 
11.1% (1/9) 
SWTPEG (N=7) 
85.7% (6/7) 
14.3% (1/7) 
TEN (N=6) 
100% (6/6) 
0.0% (0/6) 
WPNN (N=9) 
77.8% (7/9) 
22.2% (2/9) 
YPEN (N=9) 
88.9% (8/9) 
11.1% (1/9) 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
10 
Epilepsy specialist nurse 
 
There was a total of 158.4 WTE epilepsy specialist nurses (ESN) employed across England 
and Wales. The ESNs were employed across 81.6% (111/136) of Health Boards and Trusts. 
Of those with an ESN, the number employed ranged from 0.2 WTE to 5.0 WTE, (Table 7).  
 
Figure 2 shows a comparison of the total WTE for epilepsy specialist nurses (ESN) 
employed in England and Wales in Round 1, Round 2, Round 3 April 2018 and November 
2019.  
 
 
Figure 2: Total Whole Time Equivalent epilepsy specialist nurses employed in England and Wales in 
Round 1, Round 2, Round 3 April 2018 and November 2019. 
 
81.8
106.6
147.3
158.4
0
30
60
90
120
150
180
Round 1
Nov 2009
Round 2
Jan 2014
Round 3
Apr 2018
Round 3
Nov 2019
Total Whole Time Equivalent (WTE) 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
11 
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. 
80.1% (109/136) of Health Boards and Trusts indicated that they could offer ESN support for 
rescue medication training for parents, 77.9% (106/136) could offer support in school meetings, 
76.5% (104/136) provided individual healthcare plan facilitation and 67.6% (92/136) supported 
rescue medication training for schools. 55.9% (76/136) supported nurse led clinics, 46.3% 
(63/136) supported emergency department visits and 33.8% (46/136) were able to support 
nurse prescribing.  68.4% (93/136) were able to support home visits. 16.9% (23/136) were able to 
support all nine functions.  
 
Figure 4 shows a comparison of the percentage of Health Boards and Trusts that supported 
various epilepsy specialist nurse functions in Round 3 April 2018 and November 2019.   
 
 
 Figure 3: Percentage of Health Boards and Trusts that could support epilepsy specialist nurse functions 
(n=136). 
16.9%
33.8%
46.3%
55.9%
68.4%
67.6%
76.5%
76.5%
77.9%
80.1%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
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

Appendix: Epilepsy12 2019 Organisational full audit results 
 
12 
  
Figure 4: Percentage of Health Boards and Trusts that could support epilepsy specialist nurse functions in 
Round 3 April 2018 and November 2019. 
 
14.2%
31.8%
41.9%
51.4%
62.8%
64.9%
69.6%
70.9%
71.6%
75.0%
16.9%
33.8%
46.3%
55.9%
68.4%
67.6%
76.5%
76.5%
77.9%
80.1%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
All 9 functions
Nurse prescribing
Emergency department visits
Nurse led clinics
Home visits
Rescue medication training - schools
Ward visits
Individual healthcare plan facilitation
School meetings
Rescue medication training - parents
Round 3
Nov 2019
Round 3
Apr 2018

Appendix: Epilepsy12 2019 Organisational full audit results 
 
13 
 
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=136) 
158.4 
1.2 
0.0 
5.0 
England (N=131) 
148.0 
1.1 
0.0 
5.0 
Wales (N=5) 
10.4 
2.1 
0.0 
3.0 
 
 
 
 
 
BRPNF (N=13) 
7.1 
0.5 
0.0 
1.0 
CEWT (N=5) 
6.8 
1.4 
0.0 
2.0 
EPEN (N=14) 
15.2 
1.1 
0.0 
2.9 
EPIC (N=9) 
13.1 
1.5 
0.3 
3.6 
NTPEN (N=16) 
18.8 
1.2 
0.0 
3.7 
NWEIG (N=12) 
18.1 
1.5 
0.0 
5.0 
ORENG (N=7) 
4.2 
0.6 
0.0 
1.0 
PENNEC (N=8) 
8.6 
1.1 
0.0 
2.1 
SETPEG (N=8) 
8.8 
1.1 
0.0 
2.5 
SWEP (N=4) 
8.0 
2.0 
0.0 
3.0 
SWIPE (N=9) 
6.5 
0.7 
0.0 
2.0 
SWTPEG (N=7) 
5.6 
0.8 
0.0 
1.6 
TEN (N=6) 
12.0 
2.0 
1.0 
4.0 
WPNN (N=9) 
10.4 
1.2 
0.0 
2.1 
YPEN (N=9) 
15.1 
1.7 
0.5 
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=136) 
 
81.6% (111/136) 
 
18.4% (25/136) 
 
0.2 - 5.0 
England (N=131) 
81.7% (107/131) 
18.3% (24/131) 
0.2 - 5.0 
Wales (N=5) 
80.0% (4/5) 
20.0% (1/5) 
2.0 - 3.0 
 
 
 
 
BRPNF (N=13) 
61.5% (8/13) 
38.5% (5/13) 
0.5 - 1.0 
CEWT (N=5) 
80.0% (4/5) 
20.0% (1/5) 
1.0 - 2.0 
EPEN (N=14) 
85.7% (12/14) 
14.3% (2/14) 
0.2 - 2.9 
EPIC (N=9) 
100% (9/9) 
0.0% (0/9) 
0.3 - 3.6 
NTPEN (N=16) 
81.3% (13/16) 
18.8% (3/16) 
0.4 - 3.7 
NWEIG (N=12) 
91.7% (11/12) 
8.3% (1/12) 
0.6 -5.0 
ORENG (N=7) 
71.4% (5/7) 
28.6% (2/7) 
0.6 - 1.0 
PENNEC (N=8) 
75.0% (6/8) 
25.0% (2/8) 
1.0 - 2.1 
SETPEG (N=8) 
75.0% (6/8) 
25.0% (2/8) 
0.3 - 2.5 
SWEP (N=4) 
75.0% (3/4) 
25.0% (1/4) 
2.0 - 3.0 
SWIPE (N=9) 
66.7% (6/9) 
33.3% (3/9) 
0.3 - 2.0 
SWTPEG (N=7) 
71.4% (5/7) 
28.6% (2/7) 
0.8 - 1.6 
TEN (N=6) 
100% (6/6) 
0.0% (0/6) 
1.0 - 4.0 
WPNN (N=9) 
88.9% (8/9) 
11.1% (1/9) 
0.2 - 2.1 
YPEN (N=9) 
100% (9/9) 
0.0% (0/9) 
0.5 - 4.8 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
14 
  
Table 8: Health Boards and Trusts that could support epilepsy nurse functions (n=136). 
 
Country/network 
Home visits 
Nurse led clinics 
Emergency    
department visits 
Ward visits 
Nurse prescribing 
School meetings 
England and Wales 
(N=136) 
68.4% (93/136) 
55.9% (76/136) 
46.3% (63/136) 
76.5% (104/136) 
33.8% (46/136) 
77.9% (106/136) 
England (N=131) 
68.7% (90/131) 
55.7% (73/131) 
48.1% (63/131) 
77.1% (101/131) 
34.4% (45/131) 
77.9% (102/131) 
Wales (N=5) 
60.0% (3/5) 
60.0% (3/5) 
0.0% (0/5) 
60.0% (3/5) 
20.0% (1/5) 
80.0% (4/5) 
 
 
 
 
 
 
BRPNF (N=13) 
38.5% (5/13) 
38.5% (5/13) 
30.8% (4/13) 
61.5% (8/13) 
30.8% (4/13) 
53.8% (7/13) 
CEWT (N=5) 
40.0% (2/5) 
80.0% (4/5) 
80.0% (4/5) 
80.0% (4/5) 
40.0% (2/5) 
80.0% (4/5) 
EPEN (N=14) 
57.1% (8/14) 
57.1% (8/14) 
71.4% (10/14) 
85.7% (12/14) 
21.4% (3/14) 
78.6% (11/14) 
EPIC (N=9) 
100% (9/9) 
55.6% (5/9) 
44.4% (4/9) 
100% (9/9) 
66.7% (6/9) 
100% (9/9) 
NTPEN (N=16) 
68.8% (11/16) 
56.3% (9/16) 
56.3% (9/16) 
81.3% (13/16) 
18.8% (3/16) 
68.8% (11/16) 
NWEIG (N=12) 
91.7% (11/12) 
58.3% (7/12) 
25.0% (3/12) 
91.7% (11/12) 
50.0% (6/12) 
91.7% (11/12) 
ORENG (N=7) 
71.4% (5/7) 
42.9% (3/7) 
57.1% (4/7) 
71.4% (5/7) 
14.3% (1/7) 
71.4% (5/7) 
PENNEC (N=8) 
62.5% (5/8) 
62.5% (5/8) 
50.0% (4/8) 
62.5% (5/8) 
50.0% (4/8) 
75.0% (6/8) 
SETPEG (N=8) 
75% (6/8) 
75.0% (6/8) 
50.0% (4/8) 
50.0% (4/8) 
12.5% (1/8) 
75.0% (6/8) 
SWEP (N=4) 
50.0% (2/4) 
50.0% (2/4) 
0.0% (0/4) 
50.0% (2/4) 
0.0% (0/4) 
75.0% (3/4) 
SWIPE (N=9) 
44.4% (4/9) 
33.3% (3/9) 
55.6% (5/9) 
66.7% (6/9) 
44.4% (4/9) 
55.6% (5/9) 
SWTPEG (N=7) 
71.4% (5/7) 
57.1% (4/7) 
28.6% (2/7) 
71.4% (5/7) 
28.6% (2/7) 
71.4% (5/7) 
TEN (N=6) 
100% (6/6) 
83.3% (5/6) 
66.7% (4/6) 
100% (6/6) 
50.0% (3/6) 
100% (6/6) 
WPNN (N=9) 
77.8% (7/9) 
44.4% (4/9) 
33.3% (3/9) 
77.8% (7/9) 
33.3% (3/9) 
88.9% (8/9) 
YPEN (N=9) 
77.8% (7/9) 
66.7% (6/9) 
33.3% (3/9) 
77.8% (7/9) 
44.4% (4/9) 
100% (9/9) 
 
 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
15 
Table 8 (continued): Health Boards and Trusts that could support epilepsy nurse functions (n=136). 
  
Country/network 
Individual HCP facilitation 
Rescue medication 
training parents 
Rescue medication 
training schools 
Supporting all 9 functions 
England and Wales (N=136) 
76.5% (104/136) 
80.1% (109/136) 
67.6% (92/136) 
16.9% (23/136) 
England (N=131) 
76.3% (100/131) 
80.2% (105/131) 
67.2% (88/131) 
17.6% (23/131) 
Wales (N=5) 
80.0% (4/5) 
80.0% (4/5) 
80.0% (4/5) 
0.0% (0/5) 
  
BRPNF (N=13) 
53.8% (7/13) 
61.5% (8/13) 
46.2% (6/13) 
15.4% (2/13) 
CEWT (N=5) 
80.0% (4/5) 
80.0% (4/5) 
60.0% (3/5) 
20.0% (1/5) 
EPEN (N=14) 
85.7% (12/14) 
85.7% (12/14) 
50.0% (7/14) 
14.3% (2/14) 
EPIC (N=9) 
100% (9/9) 
100% (9/9) 
100% (9/9) 
33.3% (3/9) 
NTPEN (N=16) 
75.0% (12/16) 
81.3% (13/16) 
56.3% (9/16) 
0.0% (0/16) 
NWEIG (N=12) 
91.7% (11/12) 
83.3% (10/12) 
83.3% (10/12) 
8.3% (1/12) 
ORENG (N=7) 
71.4% (5/7) 
71.4% (5/7) 
57.1% (4/7) 
0.0% (0/7) 
PENNEC (N=8) 
75.0% (6/8) 
75.0% (6/8) 
75.0% (6/8) 
37.5% (3/8) 
SETPEG (N=8) 
75.0% (6/8) 
75.0% (6/8) 
75.0% (6/8) 
12.5% (1/8) 
SWEP (N=4) 
75.0% (3/4) 
75.0% (3/4) 
75.0% (3/4) 
0.0% (0/4) 
SWIPE (N=9) 
55.6% (5/9) 
66.7% (6/9) 
66.7% (6/9) 
22.2% (2/9) 
SWTPEG (N=7) 
71.4% (5/7) 
71.4% (5/7) 
57.1% (4/7) 
28.6% (2/7) 
TEN (N=6) 
83.3% (5/6) 
100% (6/6) 
100% (6/6) 
33.3% (2/6) 
WPNN (N=9) 
77.8% (7/9) 
77.8% (7/9) 
44.4% (4/9) 
11.1% (1/9) 
YPEN (N=9) 
77.8% (7/9) 
100% (9/9) 
100% (9/9) 
33.3% (3/9) 
 
 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
16 
Table 9: Health Boards and Trusts that could support epilepsy nurse functions (n=111). These are Health Boards and Trusts that had employed 
some level of ESN. 
 
 
 
 
Country/network 
Home visits 
Nurse led clinics 
 
Emergency 
department visits 
Ward visits 
Nurse prescribing 
School meetings 
England and Wales 
(N=111) 
83.8% (93/111) 
68.5% (76/111) 
56.8% (63/111) 
93.7% (104/111) 
41.4% (46/111) 
95.5% (106/111) 
England (N=107) 
84.1% (90/107) 
68.2% (73/107) 
58.9% (63/107) 
94.4% (101/107) 
42.1% (45/107) 
95.3% (102/107) 
Wales (N=4) 
75.0% (3/4) 
75.0% (3/4) 
0.0% (0/4) 
75.0% (3/4) 
25.0% (1/4) 
100% (4/4) 
 
 
 
 
 
 
 
BRPNF (N=8) 
62.5% (5/8) 
62.5% (5/8) 
50.0% (4/8) 
100% (8/8) 
50.0% (4/8) 
87.5% (7/8) 
CEWT (N=4) 
50.0% (2/4) 
100% (4/4) 
100% (4/4) 
100% (4/4) 
50.0% (2/4) 
100% (4/4) 
EPEN (N=12) 
66.7% (8/12) 
66.7% (8/12) 
83.3% (10/12) 
100% (12/12) 
25.0% (3/12) 
91.7% (11/12) 
EPIC (N=9) 
100% (9/9) 
55.6% (5/9) 
44.4% (4/9) 
100% (9/9) 
66.7% (6/9) 
100% (9/9) 
NTPEN (N=13) 
84.6% (11/13) 
69.2% (9/13) 
69.2% (9/13) 
100% (13/13) 
23.1% (3/13) 
84.6% (11/13) 
NWEIG (N=11) 
100% (11/11) 
63.6% (7/11) 
27.3% (3/11) 
100% (11/11) 
54.5% (6/11) 
100% (11/11) 
ORENG (N=5) 
100% (5/5) 
60.0% (3/5) 
80.0% (4/5) 
100% (5/5) 
20.0% (1/5) 
100% (5/5) 
PENNEC (N=6) 
83.3% (5/6) 
83.3% (5/6) 
66.7% (4/6) 
83.3% (5/6) 
66.7% (4/6) 
100% (6/6) 
SETPEG (N=6) 
100% (6/6) 
100% (6/6) 
66.7% (4/6) 
66.7% (4/6) 
16.7% (1/6) 
100% (6/6) 
SWEP (N=3) 
66.7% (2/3) 
66.7% (2/3) 
0.0% (0/3) 
66.7% (2/3) 
0.0% (0/3) 
100% (3/3) 
SWIPE (N=6) 
66.7% (4/6) 
50.0% (3/6) 
83.3% (5/6) 
100% (6/6) 
66.7% (4/6) 
83.3% (5/6) 
SWTPEG (N=5) 
100% (5/5) 
80.0% (4/5) 
40.0% (2/5) 
100% (5/5) 
40.0% (2/5) 
100% (5/5) 
TEN (N=6) 
100% (6/6) 
83.3% (5/6) 
66.7% (4/6) 
100% (6/6) 
50.0% (3/6) 
100% (6/6) 
WPNN (N=8) 
87.5% (7/8) 
50.0% (4/8) 
37.5% (3/8) 
87.5% (7/8) 
37.5% (3/8) 
100% (8/8) 
YPEN (N=9) 
77.8% (7/9) 
66.7% (6/9) 
33.3% (3/9) 
77.8% (7/9) 
44.4% (4/9) 
100% (9/9) 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
17 
Table 9 (continued): Health Boards and Trusts that could support epilepsy nurse functions (n=111). These are Health Boards and Trusts that 
had employed some level of ESN 
 
Country/network 
Individual HCP facilitation 
Rescue medication 
training with parents 
Rescue medication 
training in schools 
Supporting all 9 functions 
England and Wales (N=111) 
93.7% (104/111) 
98.2% (109/111) 
82.9% (92/111) 
20.7% (23/111) 
England (N=107) 
93.5% (100/107) 
98.1% (105/107) 
82.2% (88/107) 
21.5% (23/107) 
Wales (N=4) 
100% (4/4) 
100% (4/4) 
100% (4/4) 
0.0% (0/4) 
 
 
 
 
 
BRPNF (N=8) 
87.5% (7/8) 
100% (8/8) 
75.0% (6/8) 
25.0% (2/8) 
CEWT (N=4) 
100% (4/4) 
100% (4/4) 
75.0% (3/4) 
25.0% (1/4) 
EPEN (N=12) 
100% (12/12) 
100% (12/12) 
58.3% (7/12) 
16.7% (2/12) 
EPIC (N=9) 
100% (9/9) 
100% (9/9) 
100% (9/9) 
33.3% (3/9) 
NTPEN (N=13) 
92.3% (12/13) 
100% (13/13) 
69.2% (9/13) 
0.0% (0/13) 
NWEIG (N=11) 
100% (11/11) 
90.9% (10/11) 
90.9% (10/11) 
9.1% (1/11) 
ORENG (N=5) 
100% (5/5) 
100% (5/5) 
80.0% (4/5) 
0.0% (0/5) 
PENNEC (N=6) 
100% (6/6) 
100% (6/6) 
100% (6/6) 
50.0% (3/6) 
SETPEG (N=6) 
100% (6/6) 
100% (6/6) 
100% (6/6) 
16.7% (1/6) 
SWEP (N=3) 
100% (3/3) 
100% (3/3) 
100% (3/3) 
0.0% (0/3) 
SWIPE (N=6) 
83.3% (5/6) 
100% (6/6) 
100% (6/6) 
33.3% (2/6) 
SWTPEG (N=5) 
100% (5/5) 
100% (5/5) 
80.0% (4/5) 
40.0% (2/5) 
TEN (N=6) 
83.3% (5/6) 
100% (6/6) 
100% (6/6) 
33.3% (2/6) 
WPNN (N=8) 
87.5% (7/8) 
87.5% (7/8) 
50.0% (4/8) 
12.5% (1/8) 
YPEN (N=9) 
77.8% (7/9) 
100% (9/9) 
100% (9/9) 
33.3% (3/9) 
 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
18 
Clinic configuration 
 
Defined epilepsy clinic  
 
89.7% (122/136) of Health Boards and Trusts had a defined epilepsy clinic seeing patients at 
secondary level, (Table 10). 87.7% (107/122) of Health Boards and Trusts holding defined 
epilepsy clinics allowed at least 20 minutes with a consultant with expertise in epilepsy and an 
ESN, either simultaneously or in succession, (Table 12). A total of 252.9 consultant or associate 
specialist led secondary level ‘epilepsy clinics’ took place each week across England and Wales. 
The mean number of consultant or associate specialist clinics taking place per week was 2.1 
(range 0-6), (Table 11).  
 
Figure 5 shows a comparison of the total number of consultant or associate specialist led 
secondary level epilepsy clinics in Round 1, Round 2, Round 3 April 2018 and November 2019. 
 
 
 
Figure 5: Total number of consultant or associate specialist led secondary level epilepsy clinics 
in Round 1, Round 2, Round 3 April 2018 and November 2019.
xx-xxxx-xxxx
191.7
242.5
252.9
0
40
80
120
160
200
240
280
Round 1
Nov 2009
Round 2
Jan 2014
Round 3
Apr 2018
Round 3
Nov 2019
Total no of clincis

Appendix: Epilepsy12 2019 Organisational full audit results 
 
19 
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=136) 
89.7% (122/136) 
10.3% (14/136) 
England (N=131) 
89.3% (117/131) 
10.7% (14/131) 
Wales (N=5) 
100% (5/5) 
0.0% (0/5) 
 
 
 
BRPNF (N=13) 
69.2% (9/13) 
30.8% (4/13) 
CEWT (N=5) 
100% (5/5) 
0.0% (0/5) 
EPEN (N=14) 
85.7% (12/14) 
14.3% (2/14) 
EPIC (N=9) 
100% (9/9) 
0.0% (0/9) 
NTPEN (N=16) 
87.5% (14/16) 
12.5% (2/16) 
NWEIG (N=12) 
100% (12/12) 
0.0% (0/12) 
ORENG (N=7) 
85.7% (6/7) 
14.3% (1/7) 
PENNEC (N=8) 
100% (8/8) 
0.0% (0/8) 
SETPEG (N=8) 
87.5% (7/8) 
12.5% (1/8) 
SWEP (N=4) 
100% (4/4) 
0.0% (0/4) 
SWIPE (N=9) 
77.8% (7/9) 
22.2% (2/9) 
SWTPEG (N=7) 
100% (7/7) 
0.0% (0/7) 
TEN (N=6) 
100% (6/6) 
0.0% (0/6) 
WPNN (N=9) 
88.9% (8/9) 
11.1% (1/9) 
YPEN (N=9) 
88.9% (8/9) 
11.1% (1/9) 
 
 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
20 
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=122) 
252.9 
2.1 
0.0 
6.0 
England (N=117) 
237.7 
2.0 
0.0 
6.0 
Wales (N=5) 
15.2 
3.0 
1.5 
4.7 
 
 
 
 
 
BRPNF (N=9) 
13.9 
1.5 
1.0 
3.0 
CEWT (N=5) 
12.0 
2.4 
1.0 
4.5 
EPEN (N=12) 
23.9 
2.0 
0.6 
4.5 
EPIC (N=9) 
19.1 
2.1 
0.5 
4.7 
NTPEN (N=14) 
29.9 
2.1 
0.8 
4.0 
NWEIG (N=12) 
26.3 
2.2 
1.0 
4.5 
ORENG (N=6) 
9.2 
1.5 
0.8 
3.0 
PENNEC (N=8) 
15.3 
1.9 
0.5 
4.0 
SETPEG (N=7) 
20.0 
2.9 
1.3 
6.0 
SWEP (N=4) 
10.5 
2.6 
1.5 
4.0 
SWIPE (N=7) 
9.2 
1.3 
0.0 
2.3 
SWTPEG (N=7) 
17.5 
2.5 
1.0 
4.5 
TEN (N=6) 
9.5 
1.6 
0.5 
2.0 
WPNN (N=8) 
19.3 
2.4 
0.5 
4.8 
YPEN (N=8) 
17.6 
2.2 
0.5 
3.0 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
21 
 
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=122) 
87.7% (107/122) 
12.3% (15/122) 
England (N=117) 
87.2% (102/117) 
12.8% (15/117) 
Wales (N=5) 
100% (5/5) 
0.0% (0/5) 
 
 
 
BRPNF (N=9) 
88.9% (8/9) 
11.1% (1/9) 
CEWT (N=5) 
100% (5/5) 
0.0% (0/5) 
EPEN (N=12) 
91.7% (11/12) 
8.3% (1/12) 
EPIC (N=9) 
100% (9/9) 
0.0% (0/9) 
NTPEN (N=14) 
71.4% (10/14) 
28.6% (4/14) 
NWEIG (N=12) 
100% (12/12) 
0.0% (0/12) 
ORENG (N=6) 
83.3% (5/6) 
16.7% (1/6) 
PENNEC (N=8) 
62.5% (5/8) 
37.5% (3/8) 
SETPEG (N=7) 
100% (7/7) 
0.0% (0/7) 
SWEP (N=4) 
100% (4/4) 
0.0% (0/4) 
SWIPE (N=7) 
85.7% (6/7) 
14.3% (1/7) 
SWTPEG (N=7) 
85.7% (6/7) 
14.3% (1/7) 
TEN (N=6) 
100% (6/6) 
0.0% (0/6) 
WPNN (N=8) 
87.5% (7/8) 
12.5% (1/8) 
YPEN (N=8) 
75.0% (6/8) 
25.0% (2/8) 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
22 
Epilepsy Best Practice Tariff (BPC) – England only 
 
Figure 6 shows 46.6% (61/131) of Trusts in England were running an Epilepsy Best Practice Tariff 
(BPC) service. 26.0% (34/131) Trusts were working toward BPT, 20.6% (27/131) were not running 
a BPT service whilst 6.9% (9/131) reported that this was not applicable, (Table 13).  
 
Figure 7 shows a comparison of the percentage of Trusts running a BPT epilepsy service in 
Round 3 April 2018 and November 2019.  
 
 
 
Figure 6: Percentage of Trusts receiving TFC 223 Epilepsy Best Practice Criteria (England only) 
(n=131) 
 
 
Figure 7: Percentage of Trusts receiving TFC 223 Epilepsy Best Practice Criteria (England only) 
in Round 3 April 2018 and November 2019. 
46.6%
26.0%
20.6%
6.9%
0%
10%
20%
30%
40%
50%
Yes
In development
No
Not applicable
46.6%
26.0%
20.6%
6.9%
41.6%
27.5%
23.2%
7.8%
0%
10%
20%
30%
40%
50%
Yes
In development
No
Not applicable
Round 3
Nov 2019
Round 3
Apr 2018

Appendix: Epilepsy12 2019 Organisational full audit results 
 
23 
Table 13: Trusts that were running TFC 223 Epilepsy Best Practice Criteria (BPC) clinics. 
Country/network 
Yes 
In development 
No 
N/A 
England (N=131) 
46.6% (61/131) 
26.0% (34/131) 
20.6% (27/131) 
6.9% (9/131) 
 
 
 
 
 
BRPNF (N=13) 
30.8% (4/13) 
30.8% (4/13) 
38.5% (5/13) 
0.0% (0/13) 
CEWT (N=5) 
60.0% (3/5) 
0.0% (0/5) 
20.0% (1/5) 
20.0% (1/5) 
EPEN (N=14) 
50.0% (7/14) 
21.4% (3/14) 
14.3% (2/14) 
14.3% (2/14) 
EPIC (N=8) 
37.5% (3/8) 
50.0% (4/8) 
12.5% (1/8) 
0.0% (0/8) 
NTPEN (N=16) 
31.3% (5/16) 
31.3% (5/16) 
25.0% (4/16) 
12.5% (2/16) 
NWEIG (N=12) 
41.7% (5/12) 
33.3% (4/12) 
25.0% (3/12) 
0.0% (0/12) 
ORENG (N=7) 
57.1% (4/7) 
0.0% (0/7) 
42.9% (3/7) 
0.0% (0/7) 
PENNEC (N=8) 
50.0% (4/8) 
37.5% (3/8) 
12.5% (1/8) 
0.0% (0/8) 
SETPEG (N=8) 
37.5% (3/8) 
12.5% (1/8) 
37.5% (3/8) 
12.5% (1/8) 
SWIPE (N=9) 
44.4% (4/9) 
22.2% (2/9) 
33.3% (3/9) 
0.0% (0/9) 
SWTPEG (N=7) 
57.1% (4/7) 
28.6% (2/7) 
14.3% (1/7) 
0.0% (0/7) 
TEN (N=6) 
66.7% (4/6) 
33.3% (2/6) 
0.0% (0/6) 
0.0% (0/6) 
WPNN (N=9) 
66.7% (6/9) 
11.1% (1/9) 
0.0% (0/9) 
22.2% (2/9) 
YPEN (N=9) 
55.6% (5/9) 
33.3% (3/9) 
0.0% (0/9) 
11.1% (1/9) 
 
 
Tertiary provision 
 
Paediatric neurology services 
 
A total of 109.4 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). 16.9% (23/136) of Health Boards and Trusts had some level of 
whole time equivalent (WTE) paediatric neurologists who manage children with epilepsy 
(acutely and/or non-acutely) employed (this ranged from 0.6 WTE to 10.6 WTE, (Table 15). 
Table 16 shows, 92.6% (126/136) of Health Boards and Trusts had agreed referral pathway to 
tertiary paediatric neurology services. 23.5% (32/136) 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). 73.5% (100/136) of Health Boards 
and Trusts reported that they host satellite paediatric neurology clinics, (Table 18). 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
24 
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=136) 
109.4 
0.0 
10.6 
England (N=131) 
108.8 
0.0 
10.6 
Wales (N=5) 
0.6 
0.0 
0.6 
 
 
 
 
BRPNF (N=13) 
7.0 
0.0 
7.0 
CEWT (N=5) 
5.5 
0.0 
3.0 
EPEN (N=14) 
4.4 
0.0 
4.4 
EPIC (N=9) 
5.2 
0.0 
5.2 
NTPEN (N=16) 
26.6 
0.0 
10.6 
NWEIG (N=12) 
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=8) 
6.6 
0.0 
3.6 
SWEP (N=4) 
0.6 
0.0 
0.6 
SWIPE (N=9) 
7.0 
0.0 
7.0 
SWTPEG (N=7) 
3.0 
0.0 
3.0 
TEN (N=6) 
10.0 
0.0 
5.0 
WPNN (N=9) 
6.5 
0.0 
6.5 
YPEN (N=9) 
6.4 
0.0 
6.4 
 
 
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=136) 
16.9% (23/136) 
83.1% (113/136) 
0.6 - 10.6 
England (N=131) 
16.8% (22/131) 
83.2% (109/131) 
1.0 - 10.6 
Wales (N=5) 
20.0% (1/5) 
80.0% (4/5) 
0.6 - 0.6 
 
 
 
 
BRPNF (N=13) 
7.7% (1/13) 
92.3% (12/13) 
7.0 - 7.0 
CEWT (N=5) 
40.0% (2/5) 
60.0% (3/5) 
2.5 - 3.0 
EPEN (N=14) 
7.1% (1/14) 
92.9% (13/14) 
4.4 - 4.4 
EPIC (N=9) 
11.1% (1/9) 
88.9% (8/9) 
5.2 - 5.2 
NTPEN (N=16) 
25.0% (4/16) 
75.0% (12/16) 
3.0 - 10.6 
NWEIG (N=12) 
16.7% (2/12) 
83.3% (10/12) 
2.0 - 7.2 
ORENG (N=7) 
14.3% (1/7) 
85.7% (6/7) 
5.7 - 5.7 
PENNEC (N=8) 
25.0% (2/8) 
75.0% (6/8) 
1.0 - 4.7 
SETPEG (N=8) 
25.0% (2/8) 
75.0% (6/8) 
3.0 - 3.6 
SWEP (N=4) 
25.0% (1/4) 
75.0% (3/4) 
0.6 - 0.6 
SWIPE (N=9) 
11.1% (1/9) 
88.9% (8/9) 
7.0 -7.0 
SWTPEG (N=7) 
14.3% (1/7) 
85.7% (6/7) 
3.0 -3.0 
TEN (N=6) 
33.3% (2/6) 
66.7% (4/6) 
5.0 -5.0 
WPNN (N=9) 
11.1% (1/9) 
88.9% (8/9) 
6.5 - 6.5 
YPEN (N=9) 
 
11.1% (1/9) 
88.9% (8/9) 
6.4 - 6.4 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
25 
Table 16: Health Boards and Trusts with agreed 
referral pathways to tertiary paediatric neurology 
services. 
 
Country/network 
Yes 
No 
England and Wales 
(N=136) 
 
92.6% (126/136) 
 
7.4% (10/136) 
England (N=131) 
93.1% (122/131) 
6.9% (9/131) 
Wales (N=5) 
80.0% (4/5) 
20.0% (1/5) 
 
 
 
BRPNF (N=13) 
76.9% (10/13) 
23.1% (3/13) 
CEWT (N=5) 
100% (5/5) 
0.0% (0/5) 
EPEN (N=14) 
100% (14/14) 
0.0% (0/14) 
EPIC (N=9) 
100% (9/9) 
0.0% (0/9) 
NTPEN (N=16) 
100% (16/16) 
0.0% (0/16) 
NWEIG (N=12) 
91.7% (11/12) 
8.3% (1/12) 
ORENG (N=7) 
85.7% (6/7) 
14.3% (1/7) 
PENNEC (N=8) 
87.5% (7/8) 
12.5% (1/8) 
SETPEG (N=8) 
100% (8/8) 
0.0% (0/8) 
SWEP (N=4) 
75.0% (3/4) 
25.0% (1/4) 
SWIPE (N=9) 
88.9% (8/9) 
11.1% (1/9) 
SWTPEG (N=7) 
100% (7/7) 
0.0% (0/7) 
TEN (N=6) 
100% (6/6) 
0.0% (0/6) 
WPNN (N=9) 
88.9% (8/9) 
11.1% (1/9) 
YPEN (N=9) 
88.9% (8/9) 
11.1% (1/9) 
 
 
Table 17a: Health Boards and Trusts that could receive paediatric 
neurological direct referrals from general practice and emergency 
departments. 
  
Country/network 
Yes 
No 
N/A 
England and Wales 
(N=136) 
 
23.5% (32/136) 
 
50.0% (68/136) 
 
26.5% (36/136) 
England (N=131) 
22.9% (30/131) 
50.4% (66/131) 
26.7% (35/131) 
Wales (N=5) 
40.0% (2/5) 
40.0% (2/5) 
20.0% (1/5) 
 
 
 
 
BRPNF (N=13) 
7.7% (1/13) 
23.1% (3/13) 
69.2% (9/13) 
CEWT (N=5) 
20.0% (1/5) 
20.0% (1/5) 
60.0% (3/5) 
EPEN (N=14) 
0.0% (0/14) 
100% (14/14) 
0.0% (0/14) 
EPIC (N=9) 
22.2% (2/9) 
33.3% (3/9) 
44.4% (4/9) 
NTPEN (N=16) 
18.8% (3/16) 
56.3% (9/16) 
25.0% (4/16) 
NWEIG (N=12) 
33.3% (4/12) 
66.7% (8/12) 
0.0% (0/12) 
ORENG (N=7) 
42.9% (3/7) 
57.1% (4/7) 
0.0% (0/7) 
PENNEC (N=8) 
25.0% (2/8) 
62.5% (5/8) 
12.5% (1/8) 
SETPEG (N=8) 
37.5% (3/8) 
25.0% (2/8) 
37.5% (3/8) 
SWEP (N=4) 
25.0% (1/4) 
50.0% (2/4) 
25.0% (1/4) 
SWIPE (N=9) 
22.2% (2/9) 
44.4% (4/9) 
33.3% (3/9) 
SWTPEG (N=7) 
14.3% (1/7) 
71.4% (5/7) 
14.3% (1/7) 
TEN (N=6) 
66.7% (4/6) 
16.7% (1/6) 
16.7% (1/6) 
WPNN (N=9) 
11.1% (1/9) 
44.4% (4/9) 
44.4% (4/9) 
YPEN (N=9) 
 
44.4% (4/9) 
33.3% (3/9) 
22.2% (2/9) 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
26 
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=100) 
 
32.0% (32/100) 
 
68.0% (68/100) 
England (N=96) 
31.3% (30/96) 
68.8% (66/96) 
Wales (N=4) 
50.0% (2/4) 
50.0% (2/4) 
 
 
 
BRPNF (N=4) 
25.0% (1/4) 
75.0% (3/4) 
CEWT (N=2) 
50.0% (1/2) 
50.0% (1/2) 
EPEN (N=14) 
0.0% (0/14) 
100% (14/14) 
EPIC (N=5) 
40.0% (2/5) 
60.0% (3/5) 
NTPEN (N=12) 
25.0% (3/12) 
75.0% (9/12) 
NWEIG (N=12) 
33.3% (4/12) 
66.7% (8/12) 
ORENG (N=7) 
42.9% (3/7) 
57.1% (4/7) 
PENNEC (N=7) 
28.6% (2/7) 
71.4% (5/7) 
SETPEG (N=5) 
60.0% (3/5) 
40.0% (2/5) 
SWEP (N=3) 
33.3% (1/3) 
66.7% (2/3) 
SWIPE (N=6) 
33.3% (2/6) 
66.7% (4/6) 
SWTPEG (N=6) 
16.7% (1/6) 
83.3% (5/6) 
TEN (N=5) 
80.0% (4/5) 
20.0% (1/5) 
WPNN (N=5) 
20.0% (1/5) 
80.0% (4/5) 
YPEN (N=7) 
57.1% (4/7) 
42.9% (3/7) 
 
Table 18: Health Boards and Trusts that were hosting satellite 
paediatric neurology clinics. 
 
 
Country/network 
Yes 
No 
N/A 
 
England and Wales 
(N=136) 
 
73.5% (100/136) 
 
22.8% (31/136) 
 
3.7% (5/136) 
England (N=131) 
72.5% (95/131) 
23.7% (31/131) 
3.8% (5/131) 
Wales (N=5) 
100% (5/5) 
0.0% (0/5) 
0.0% (0/5) 
 
 
 
 
BRPNF (N=13) 
23.1% (3/13) 
53.8% (7/13) 
23.1% (3/13) 
CEWT (N=5) 
80.0% (4/5) 
0.0% (0/5) 
20.0% (1/5) 
EPEN (N=14) 
78.6% (11/14) 
21.4% (3/14) 
0.0% (0/14) 
EPIC (N=9) 
100% (9/9) 
0.0% (0/9) 
0.0% (0/9) 
NTPEN (N=16) 
31.3% (5/16) 
68.8% (11/16) 
0.0% (0/16) 
NWEIG (N=12) 
83.3% (10/12) 
8.3% (1/12) 
8.3% (1/12) 
ORENG (N=7) 
100% (7/7) 
0.0% (0/7) 
0.0% (0/7) 
PENNEC (N=8) 
75.0% (6/8) 
25.0% (2/8) 
0.0% (0/8) 
SETPEG (N=8) 
75.0% (6/8) 
25.0% (2/8) 
0.0% (0/8) 
SWEP (N=4) 
100% (4/4) 
0.0% (0/4) 
0.0% (0/4) 
SWIPE (N=9) 
88.9% (8/9) 
11.1% (1/9) 
0.0% (0/9) 
SWTPEG (N=7) 
100% (7/7) 
0.0% (0/7) 
0.0% (0/7) 
TEN (N=6) 
100% (6/6) 
0.0% (0/6) 
0.0% (0/6) 
WPNN (N=9) 
77.8% (7/9) 
22.2% (2/9) 
0.0% (0/9) 
YPEN (N=9) 
77.8% (7/9) 
22.2% (2/9) 
0.0% (0/9) 
 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
27 
Other services 
14.7% (20/136) of Health Boards and Trusts provided commencement of a ketogenic diet 
service, whilst 19.1% (26/136) provided the ongoing review of ketogenic diet services, (Table 19 
and Table 20 respectively). 
Figure 8 shows, 9.6% (13/136) of Health Boards and Trusts provided insertion of a vagal nerve 
stimulator (VNS) within their locations, whilst 21.3% (29/136) provided Vagal Nerve Stimulator 
(VNS) review services.  A comparison of Health Boards and Trusts that provided ketogenetic diet 
and vagal nerve stimulator (VNS) services within their locations in Round 3 April 2018 and Round 
3 November 2019 is shown in Figure 9. 
 
 
Figure 8: Percentage of Health Boards and Trusts that could provide ketogenetic diet and vagal 
nerve stimulator. 
 
 
 
 
14.7%
19.1%
9.6%
21.3%
0%
5%
10%
15%
20%
25%
30%
Commence diet
Ongoing review
Insertion
Review
Ketogenetic diet
Vagal nerve stimulator

Appendix: Epilepsy12 2019 Organisational full audit results 
 
28 
  
Figure 9: Percentage of Health Boards and Trusts that could provide ketogenetic diet and vagal 
nerve stimulator services in Round 3 April 2018 and November 2019. 
 
 
 
 
 
 
 
14.7%
19.1%
9.6%
21.3%
14.9%
21.0%
8.1%
23.0%
0%
5%
10%
15%
20%
25%
Commence diet
Ongoing review
Insertion
Review
Ketogenetic diet
Vagal nerve stimulator
Round 3
Nov 2019
Round 3
Apr 2018

Appendix: Epilepsy12 2019 Organisational full audit results 
 
29 
 
Table 19: Health Boards and Trusts that could facilitate the 
commencement of a ketogenic diet.  
 
Country/network 
Yes 
No 
Uncertain 
England and Wales 
(N=136) 
14.7% (20/136) 
85.3% (116/136) 
0.0% (0/136) 
England (N=131) 
15.3% (20/131) 
84.7% (111/131) 
0.0% (0/131) 
Wales (N=5) 
0.0% (0/5) 
100% (5/5) 
0.0% (0/5) 
 
 
 
 
BRPNF (N=13) 
7.7% (1/13) 
92.3% (12/13) 
0.0% (0/13) 
CEWT (N=5) 
60.0% (3/5) 
40.0% (2/5) 
0.0% (0/5) 
EPEN (N=14) 
7.1% (1/14) 
92.9% (13/14) 
0.0% (0/14) 
EPIC (N=9) 
11.1% (1/9) 
88.9% (8/9) 
0.0% (0/9) 
NTPEN (N=16) 
6.3% (1/16) 
93.8% (15/16) 
0.0% (0/16) 
NWEIG (N=12) 
16.7% (2/12) 
83.3% (10/12) 
0.0% (0/12) 
ORENG (N=7) 
28.6% (2/7) 
71.4% (5/7) 
0.0% (0/7) 
PENNEC (N=8) 
12.5% (1/8) 
87.5% (7/8) 
0.0% (0/8) 
SETPEG (N=8) 
12.5% (1/8) 
87.5% (7/8) 
0.0% (0/8) 
SWEP (N=4) 
0.0% (0/4) 
100% (4/4) 
0.0% (0/4) 
SWIPE (N=9) 
22.2% (2/9) 
77.8% (7/9) 
0.0% (0/9) 
SWTPEG (N=7) 
14.3% (1/7) 
85.7% (6/7) 
0.0% (0/7) 
TEN (N=6) 
16.7% (1/6) 
83.3% (5/6) 
0.0% (0/6) 
WPNN (N=9) 
11.1% (1/9) 
88.9% (8/9) 
0.0% (0/9) 
YPEN (N=9) 
22.2% (2/9) 
77.8% (7/9) 
0.0% (0/9) 
 
Table 20: Health Boards and Trusts that could undertake ongoing 
review of a ketogenic diet.  
 
Country/network 
Yes 
No 
Uncertain 
England and Wales 
(N=136) 
19.1% (26/136) 
80.9% (110/136) 
0.0% (0/136) 
England (N=131) 
19.8% (26/131) 
80.2% (105/131) 
0.0% (0/131) 
Wales (N=5) 
0.0% (0/5) 
100% (5/5) 
0.0% (0/5) 
 
 
 
 
BRPNF (N=13) 
7.7% (1/13) 
92.3% (12/13) 
0.0% (0/13) 
CEWT (N=5) 
60.0% (3/5) 
40.0% (2/5) 
0.0% (0/5) 
EPEN (N=14) 
7.1% (1/14) 
92.9% (13/14) 
0.0% (0/14) 
EPIC (N=9) 
11.1% (1/9) 
88.9% (8/9) 
0.0% (0/9) 
NTPEN (N=16) 
6.3% (1/16) 
93.8% (15/16) 
0.0% (0/16) 
NWEIG (N=12) 
16.7% (2/12) 
83.3% (10/12) 
0.0% (0/12) 
ORENG (N=7) 
28.6% (2/7) 
71.4% (5/7) 
0.0% (0/7) 
PENNEC (N=8) 
37.5% (3/8) 
62.5% (5/8) 
0.0% (0/8) 
SETPEG (N=8) 
12.5% (1/8) 
87.5% (7/8) 
0.0% (0/8) 
SWEP (N=4) 
0.0% (0/4) 
100% (4/4) 
0.0% (0/4) 
SWIPE (N=9) 
55.6% (5/9) 
44.4% (4/9) 
0.0% (0/9) 
SWTPEG (N=7) 
14.3% (1/7) 
85.7% (6/7) 
0.0% (0/7) 
TEN (N=6) 
16.7% (1/6) 
83.3% (5/6) 
0.0% (0/6) 
WPNN (N=9) 
22.2% (2/9) 
77.8% (7/9) 
0.0% (0/9) 
YPEN (N=9) 
22.2% (2/9) 
77.8% (7/9) 
0.0% (0/9) 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
30 
Table 21: Health Boards and Trusts that were able to insert vagal 
nerve stimulator.  
 
Country/network 
Yes 
No 
Uncertain  
England and Wales 
(N=136) 
9.6% (13/136) 
90.4% (123/136) 
0.0% (0/136) 
England (N=131) 
9.9% (13/131) 
90.1% (118/131) 
0.0% (0/131) 
Wales (N=5) 
0.0% (0/5) 
100% (5/5) 
0.0% (0/5) 
 
 
 
 
BRPNF (N=13) 
7.7% (1/13) 
92.3% (12/13) 
0.0% (0/13) 
CEWT (N=5) 
20.0% (1/5) 
80.0% (4/5) 
0.0% (0/5) 
EPEN (N=14) 
7.1% (1/14) 
92.9% (13/14) 
0.0% (0/14) 
EPIC (N=9) 
11.1% (1/9) 
88.9% (8/9) 
0.0% (0/9) 
NTPEN (N=16) 
6.3% (1/16) 
93.8% (15/16) 
0.0% (0/16) 
NWEIG (N=12) 
8.3% (1/12) 
91.7% (11/12) 
0.0% (0/12) 
ORENG (N=7) 
14.3% (1/7) 
85.7% (6/7) 
0.0% (0/7) 
PENNEC (N=8) 
12.5% (1/8) 
87.5% (7/8) 
0.0% (0/8) 
SETPEG (N=8) 
12.5% (1/8) 
87.5% (7/8) 
0.0% (0/8) 
SWEP (N=4) 
0.0% (0/4) 
100% (4/4) 
0.0% (0/4) 
SWIPE (N=9) 
11.1% (1/9) 
88.9% (8/9) 
0.0% (0/9) 
SWTPEG (N=7) 
0.0% (0/7) 
100% (7/7) 
0.0% (0/7) 
TEN (N=6) 
16.7% (1/6) 
83.3% (5/6) 
0.0% (0/6) 
WPNN (N=9) 
11.1% (1/9) 
88.9% (8/9) 
0.0% (0/9) 
YPEN (N=9) 
11.1% (1/9) 
88.9% (8/9) 
0.0% (0/9) 
 
Table 22: Health Boards and Trusts that were able to review vagal 
nerve stimulator 
 
Country/network 
Yes 
No 
Uncertain 
England and Wales 
(N=136) 
21.3% (29/136) 
78.7% (107/136) 
0.0% (0/136) 
England (N=131) 
19.8% (26/131) 
80.2% (105/131) 
0.0% (0/131) 
Wales (N=5) 
60.0% (3/5) 
40.0% (2/5) 
0.0% (0/5) 
 
 
 
 
BRPNF (N=13) 
7.7% (1/13) 
92.3% (12/13) 
0.0% (0/13) 
CEWT (N=5) 
40.0% (2/5) 
60.0% (3/5) 
0.0% (0/5) 
EPEN (N=14) 
14.3% (2/14) 
85.7% (12/14) 
0.0% (0/14) 
EPIC (N=9) 
11.1% (1/9) 
88.9% (8/9) 
0.0% (0/9) 
NTPEN (N=16) 
6.3% (1/16) 
93.8% (15/16) 
0.0% (0/16) 
NWEIG (N=12) 
25.0% (3/12) 
75.0% (9/12) 
0.0% (0/12) 
ORENG (N=7) 
14.3% (1/7) 
85.7% (6/7) 
0.0% (0/7) 
PENNEC (N=8) 
25.0% (2/8) 
75.0% (6/8) 
0.0% (0/8) 
SETPEG (N=8) 
50.0% (4/8) 
50.0% (4/8) 
0.0% (0/8) 
SWEP (N=4) 
75.0% (3/4) 
25.0% (1/4) 
0.0% (0/4) 
SWIPE (N=9) 
44.4% (4/9) 
55.6% (5/9) 
0.0% (0/9) 
SWTPEG (N=7) 
0.0% (0/7) 
100% (7/7) 
0.0% (0/7) 
TEN (N=6) 
33.3% (2/6) 
66.7% (4/6) 
0.0% (0/6) 
WPNN (N=9) 
11.1% (1/9) 
88.9% (8/9) 
0.0% (0/9) 
YPEN (N=9) 
22.2% (2/9) 
77.8% (7/9) 
0.0% (0/9) 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
31 
Investigations 
 
Figure 10 shows the percentage of Health Boards and Trusts offering epilepsy investigation 
services. 3.7% (5/136) Health Boards and Trusts were not able to offer 12 lead ECG service. In 
40.4% (55/136) of Health Boards and Trusts, it was not possible to obtain a standard EEG at a 
location within their Trust, (Table 23).  
Figure 11 shows a comparison of availability of epilepsy investigation services across England 
and Wales in Round 3 April 2018 and November 2019. 
 
Figure 10: Percentage of Health Boards and Trusts that could provide investigation services 
(n=136). 
16.2%
14.7%
21.3%
39.7%
58.1%
56.1%
56.6%
57.4%
59.6%
54.1%
65.4%
95.6%
96.3%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
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

Appendix: Epilepsy12 2019 Organisational full audit results 
 
32 
  
Figure 11: Percentage of Health Boards and Trusts that could provide investigation services in 
Round 3 April 2018 and November 2019.
12.8%
14.2%
21.0%
37.8%
43.2%
56.1%
56.8%
58.8%
60.8%
54.1%
66.2%
95.3%
95.3%
16.2%
14.7%
21.3%
39.7%
58.1%
56.1%
56.6%
57.4%
59.6%
54.1%
65.4%
95.6%
96.3%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Home
Outpatient
Inpatient
Sedated
24-48h ambulatory
Portable on ward area
Melatonin induced
Sleep-deprived
Standard
With general anaesthetic
With sedation
Awake
12-lead ECG
Video telemetry
EEG
MRI
ECG
Percentage of Health Boards and Trusts
Round 3
Nov 2019
Round 3
Apr 2018

Appendix: Epilepsy12 2019 Organisational full audit results 
 
33 
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=136) 
96.3% (131/136) 
3.7% (5/136) 
0.0% (0/136) 
95.6% (130/136) 
4.4% (6/136) 
0.0% (0/136) 
65.4% (89/136) 
34.6% (47/136) 
0.0% (0/136) 
England 
(N=131) 
96.2% (126/131) 
3.8% (5/131) 
0.0% (0/131) 
95.4% (125/131) 
4.6% (6/131) 
0.0% (0/131) 
64.9% (85/131) 
35.1% (46/131) 
0.0% (0/131) 
Wales (N=5) 
100% (5/5) 
0.0% (0/5) 
0.0% (0/5) 
100% (5/5) 
0.0% (0/5) 
0.0% (0/5) 
80.0% (4/5) 
20.0% (1/5) 
0.0% (0/5) 
 
 
 
 
 
 
 
 
 
 
BRPNF (N=13) 
92.3% (12/13) 
7.7% (1/13) 
0.0% (0/13) 
84.6% (11/13) 
15.4% (2/13) 
0.0% (0/13) 
61.5% (8/13) 
38.5% (5/13) 
0.0% (0/13) 
CEWT (N=5) 
100% (5/5) 
0.0% (0/5) 
0.0% (0/5) 
100% (5/5) 
0.0% (0/5) 
0.0% (0/5) 
100% (5/5) 
0.0% (0/5) 
0.0% (0/5) 
EPEN (N=14) 
92.9% (13/14) 
7.1% (1/14) 
0.0% (0/14) 
92.9% (13/14) 
7.1% (1/14) 
0.0% (0/14) 
85.7% (12/14) 
14.3% (2/14) 
0.0% (0/14) 
EPIC (N=9) 
100% (9/9) 
0.0% (0/9) 
0.0% (0/9) 
100% (9/9) 
0.0% (0/9) 
0.0% (0/9) 
55.6% (5/9) 
44.4% (4/9) 
0.0% (0/9) 
NTPEN (N=16) 
100% (16/16) 
0.0% (0/16) 
0.0% (0/16) 
100% (16/16) 
0.0% (0/16) 
0.0% (0/16) 
93.8% (15/16) 
6.3% (1/16) 
0.0% (0/16) 
NWEIG (N=12) 
100% (12/12) 
0.0% (0/12) 
0.0% (0/12) 
100% (12/12) 
0.0% (0/12) 
0.0% (0/12) 
58.3% (7/12) 
41.7% (5/12) 
0.0% (0/12) 
ORENG (N=7) 
100% (7/7) 
0.0% (0/7) 
0.0% (0/7) 
100% (7/7) 
0.0% (0/7) 
0.0% (0/7) 
57.1% (4/7) 
42.9% (3/7) 
0.0% (0/7) 
PENNEC (N=8) 
100% (8/8) 
0.0% (0/8) 
0.0% (0/8) 
100% (8/8) 
0.0% (0/8) 
0.0% (0/8) 
50.0% (4/8) 
50.0% (4/8) 
0.0% (0/8) 
SETPEG (N=8) 
87.5% (7/8) 
12.5% (1/8) 
0.0% (0/8) 
87.5% (7/8) 
12.5% (1/8) 
0.0% (0/8) 
75.0% (6/8) 
25.0% (2/8) 
0.0% (0/8) 
SWEP (N=4) 
100% (4/4) 
0.0% (0/4) 
0.0% (0/4) 
100% (4/4) 
0.0% (0/4) 
0.0% (0/4) 
75.0% (3/4) 
25.0% (1/4) 
0.0% (0/4) 
SWIPE (N=9) 
100% (9/9) 
0.0% (0/9) 
0.0% (0/9) 
100% (9/9) 
0.0% (0/9) 
0.0% (0/9) 
55.6% (5/9) 
44.4% (4/9) 
0.0% (0/9) 
SWTPEG (N=7) 
100% (7/7) 
0.0% (0/7) 
0.0% (0/7) 
100% (7/7) 
0.0% (0/7) 
0.0% (0/7) 
28.6% (2/7) 
71.4% (5/7) 
0.0% (0/7) 
TEN (N=6) 
83.3% (5/6) 
16.7% (1/6) 
0.0% (0/6) 
100% (6/6) 
0.0% (0/6) 
0.0% (0/6) 
33.3% (2/6) 
66.7% (4/6) 
0.0% (0/6) 
WPNN (N=9) 
88.9% (8/9) 
11.1% (1/9) 
0.0% (0/9) 
88.9% (8/9) 
11.1% (1/9) 
0.0% (0/9) 
66.7% (6/9) 
33.3% (3/9) 
0.0% (0/9) 
YPEN (N=9) 
100% (9/9) 
0.0% (0/9) 
0.0% (0/9) 
88.9% (8/9) 
11.1% (1/9) 
0.0% (0/9) 
55.6% (5/9) 
44.4% (4/9) 
0.0% (0/9) 
 
 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
34 
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=136) 
55.9% (76/136) 
44.1% (60/136) 
0.0% (0/136) 
59.6% (81/136) 
40.4% (55/136) 
0.0% (0/136) 
57.4% (78/136) 
42.6% (58/136) 
0.0% (0/136) 
England (N=131) 
54.2% (71/131) 
45.8% (60/131) 
0.0% (0/131) 
58% (76/131) 
42.0% (55/131) 
0.0% (0/131) 
55.7% (73/131) 
44.3% (58/131) 
0.0% (0/131) 
Wales (N=5) 
100% (5/5) 
0.0% (0/5) 
0.0% (0/5) 
100% (5/5) 
0.0% (0/5) 
0.0% (0/5) 
100% (5/5) 
0.0% (0/5) 
0.0% (0/5) 
 
 
 
 
 
 
 
 
 
 
BRPNF (N=13) 
30.8% (4/13) 
69.2% (9/13) 
0.0% (0/13) 
53.8% (7/13) 
46.2% (6/13) 
0.0% (0/13) 
53.8% (7/13) 
46.2% (6/13) 
0.0% (0/13) 
CEWT (N=5) 
100% (5/5) 
0.0% (0/5) 
0.0% (0/5) 
80.0% (4/5) 
20.0% (1/5) 
0.0% (0/5) 
80.0% (4/5) 
20.0% (1/5) 
0.0% (0/5) 
EPEN (N=14) 
71.4% (10/14) 
28.6% (4/14) 
0.0% (0/14) 
50.0% (7/14) 
50.0% (7/14) 
0.0% (0/14) 
50.0% (7/14) 
50.0% (7/14) 
0.0% (0/14) 
EPIC (N=9) 
44.4% (4/9) 
55.6% (5/9) 
0.0% (0/9) 
33.3% (3/9) 
66.7% (6/9) 
0.0% (0/9) 
33.3% (3/9) 
66.7% (6/9) 
0.0% (0/9) 
NTPEN (N=16) 
43.8% (7/16) 
56.3% (9/16) 
0.0% (0/16) 
62.5% (10/16) 
37.5% (6/16) 
0.0% (0/16) 
62.5% (10/16) 
37.5% (6/16) 
0.0% (0/16) 
NWEIG (N=12) 
33.3% (4/12) 
66.7% (8/12) 
0.0% (0/12) 
66.7% (8/12) 
33.3% (4/12) 
0.0% (0/12) 
66.7% (8/12) 
33.3% (4/12) 
0.0% (0/12) 
ORENG (N=7) 
71.4% (5/7) 
28.6% (2/7) 
0.0% (0/7) 
42.9% (3/7) 
57.1% (4/7) 
0.0% (0/7) 
42.9% (3/7) 
57.1% (4/7) 
0.0% (0/7) 
PENNEC (N=8) 
50.0% (4/8) 
50.0% (4/8) 
0.0% (0/8) 
50.0% (4/8) 
50.0% (4/8) 
0.0% (0/8) 
50.0% (4/8) 
50.0% (4/8) 
0.0% (0/8) 
SETPEG (N=8) 
62.5% (5/8) 
37.5% (3/8) 
0.0% (0/8) 
37.5% (3/8) 
62.5% (5/8) 
0.0% (0/8) 
37.5% (3/8) 
62.5% (5/8) 
0.0% (0/8) 
SWEP (N=4) 
100% (4/4) 
0.0% (0/4) 
0.0% (0/4) 
100% (4/4) 
0.0% (0/4) 
0.0% (0/4) 
100% (4/4) 
0.0% (0/4) 
0.0% (0/4) 
SWIPE (N=9) 
66.7% (6/9) 
33.3% (3/9) 
0.0% (0/9) 
77.8% (7/9) 
22.2% (2/9) 
0.0% (0/9) 
55.6% (5/9) 
44.4% (4/9) 
0.0% (0/9) 
SWTPEG (N=7) 
57.1% (4/7) 
42.9% (3/7) 
0.0% (0/7) 
85.7% (6/7) 
14.3% (1/7) 
0.0% (0/7) 
71.4% (5/7) 
28.6% (2/7) 
0.0% (0/7) 
TEN (N=6) 
50.0% (3/6) 
50.0% (3/6) 
0.0% (0/6) 
33.3% (2/6) 
66.7% (4/6) 
0.0% (0/6) 
33.3% (2/6) 
66.7% (4/6) 
0.0% (0/6) 
WPNN (N=9) 
66.7% (6/9) 
33.3% (3/9) 
0.0% (0/9) 
66.7% (6/9) 
33.3% (3/9) 
0.0% (0/9) 
66.7% (6/9) 
33.3% (3/9) 
0.0% (0/9) 
YPEN (N=9) 
55.6% (5/9) 
44.4% (4/9) 
0.0% (0/9) 
77.8% (7/9) 
22.2% (2/9) 
0.0% (0/9) 
77.8% (7/9) 
22.2% (2/9) 
0.0% (0/9) 
 
 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
35 
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=136) 
56.6% (77/136) 
43.4% (59/136) 
0.0% (0/136) 
39.7% (54/136) 
58.8% (80/136) 
1.5% (2/136) 
40.4% (55/136) 
58.8% (80/136) 
0.7% (1/136) 
England (N=131) 
55.7% (73/131) 
44.3% (58/131) 
0.0% (0/131) 
38.2% (50/131) 
60.3% (79/131) 
1.5% (2/131) 
38.2% (50/131) 
61.1% (80/131) 
0.8% (1/131) 
Wales (N=5) 
80.0% (4/5) 
20.0% (1/5) 
0.0% (0/5) 
80.0% (4/5) 
20.0% (1/5) 
0.0% (0/5) 
100% (5/5) 
0.0% (0/5) 
0.0% (0/5) 
 
 
 
 
 
 
 
 
 
 
BRPNF (N=13) 
53.8% (7/13) 
46.2% (6/13) 
0.0% (0/13) 
38.5% (5/13) 
61.5% (8/13) 
0.0% (0/13) 
38.5% (5/13) 
61.5% (8/13) 
0.0% (0/13) 
CEWT (N=5) 
80.0% (4/5) 
20.0% (1/5) 
0.0% (0/5) 
80.0% (4/5) 
20.0% (1/5) 
0.0% (0/5) 
80.0% (4/5) 
20.0% (1/5) 
0.0% (0/5) 
EPEN (N=14) 
42.9% (6/14) 
57.1% (8/14) 
0.0% (0/14) 
7.1% (1/14) 
85.7% (12/14) 
7.1% (1/14) 
28.6% (4/14) 
71.4% (10/14) 
0.0% (0/14) 
EPIC (N=9) 
33.3% (3/9) 
66.7% (6/9) 
0.0% (0/9) 
33.3% (3/9) 
66.7% (6/9) 
0.0% (0/9) 
33.3% (3/9) 
66.7% (6/9) 
0.0% (0/9) 
NTPEN (N=16) 
56.3% (9/16) 
43.8% (7/16) 
0.0% (0/16) 
43.8% (7/16) 
56.3% (9/16) 
0.0% (0/16) 
12.5% (2/16) 
87.5% (14/16) 
0.0% (0/16) 
NWEIG (N=12) 
66.7% (8/12) 
33.3% (4/12) 
0.0% (0/12) 
58.3% (7/12) 
41.7% (5/12) 
0.0% (0/12) 
33.3% (4/12) 
66.7% (8/12) 
0.0% (0/12) 
ORENG (N=7) 
42.9% (3/7) 
57.1% (4/7) 
0.0% (0/7) 
42.9% (3/7) 
57.1% (4/7) 
0.0% (0/7) 
42.9% (3/7) 
57.1% (4/7) 
0.0% (0/7) 
PENNEC (N=8) 
50.0% (4/8) 
50.0% (4/8) 
0.0% (0/8) 
37.5% (3/8) 
62.5% (5/8) 
0.0% (0/8) 
37.5% (3/8) 
50% (4/8) 
12.5% (1/8) 
SETPEG (N=8) 
37.5% (3/8) 
62.5% (5/8) 
0.0% (0/8) 
25.0% (2/8) 
75.0% (6/8) 
0.0% (0/8) 
25.0% (2/8) 
75.0% (6/8) 
0.0% (0/8) 
SWEP (N=4) 
75.0% (3/4) 
25.0% (1/4) 
0.0% (0/4) 
75.0% (3/4) 
25.0% (1/4) 
0.0% (0/4) 
100% (4/4) 
0.0% (0/4) 
0.0% (0/4) 
SWIPE (N=9) 
66.7% (6/9) 
33.3% (3/9) 
0.0% (0/9) 
55.6% (5/9) 
44.4% (4/9) 
0.0% (0/9) 
44.4% (4/9) 
55.6% (5/9) 
0.0% (0/9) 
SWTPEG (N=7) 
85.7% (6/7) 
14.3% (1/7) 
0.0% (0/7) 
14.3% (1/7) 
71.4% (5/7) 
14.3% (1/7) 
28.6% (2/7) 
71.4% (5/7) 
0.0% (0/7) 
TEN (N=6) 
33.3% (2/6) 
66.7% (4/6) 
0.0% (0/6) 
33.3% (2/6) 
66.7% (4/6) 
0.0% (0/6) 
33.3% (2/6) 
66.7% (4/6) 
0.0% (0/6) 
WPNN (N=9) 
66.7% (6/9) 
33.3% (3/9) 
0.0% (0/9) 
44.4% (4/9) 
55.6% (5/9) 
0.0% (0/9) 
66.7% (6/9) 
33.3% (3/9) 
0.0% (0/9) 
YPEN (N=9) 
77.8% (7/9) 
22.2% (2/9) 
0.0% (0/9) 
44.4% (4/9) 
55.6% (5/9) 
0.0% (0/9) 
77.8% (7/9) 
22.2% (2/9) 
0.0% (0/9) 
 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
36 
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=136) 
21.3% (29/136) 
78.7% (107/136) 
0.0% (0/136) 
14.7% (20/136) 
83.8% (114/136) 
1.5% (2/136) 
16.2% (22/136) 
82.4% (112/136) 
1.5% (2/136) 
England (N=131) 
20.6% (27/131) 
79.4% (104/131) 
0.0% (0/131) 
14.5% (19/131) 
84.7% (111/131) 
0.8% (1/131) 
15.3% (20/131) 
83.2% (109/131) 
1.5% (2/131) 
Wales (N=5) 
40.0% (2/5) 
60.0% (3/5) 
0.0% (0/5) 
20.0% (1/5) 
60.0% (3/5) 
20.0% (1/5) 
40.0% (2/5) 
60.0% (3/5) 
0.0% (0/5) 
 
 
 
 
 
 
 
 
 
 
BRPNF (N=13) 
23.1% (3/13) 
76.9% (10/13) 
0.0% (0/13) 
23.1% (3/13) 
76.9% (10/13) 
0.0% (0/13) 
30.8% (4/13) 
69.2% (9/13) 
0.0% (0/13) 
CEWT (N=5) 
60.0% (3/5) 
40.0% (2/5) 
0.0% (0/5) 
20.0% (1/5) 
80.0% (4/5) 
0.0% (0/5) 
0.0% (0/5) 
100% (5/5) 
0.0% (0/5) 
EPEN (N=14) 
14.3% (2/14) 
85.7% (12/14) 
0.0% (0/14) 
0.0% (0/14) 
92.9% (13/14) 
7.1% (1/14) 
7.1% (1/14) 
92.9% (13/14) 
0.0% (0/14) 
EPIC (N=9) 
22.2% (2/9) 
77.8% (7/9) 
0.0% (0/9) 
22.2% (2/9) 
77.8% (7/9) 
0.0% (0/9) 
22.2% (2/9) 
77.8% (7/9) 
0.0% (0/9) 
NTPEN (N=16) 
12.5% (2/16) 
87.5% (14/16) 
0.0% (0/16) 
6.3% (1/16) 
93.8% (15/16) 
0.0% (0/16) 
12.5% (2/16) 
87.5% (14/16) 
0.0% (0/16) 
NWEIG (N=12) 
8.3% (1/12) 
91.7% (11/12) 
0.0% (0/12) 
16.7% (2/12) 
83.3% (10/12) 
0.0% (0/12) 
8.3% (1/12) 
91.7% (11/12) 
0.0% (0/12) 
ORENG (N=7) 
28.6% (2/7) 
71.4% (5/7) 
0.0% (0/7) 
28.6% (2/7) 
71.4% (5/7) 
0.0% (0/7) 
28.6% (2/7) 
71.4% (5/7) 
0.0% (0/7) 
PENNEC (N=8) 
25.0% (2/8) 
75.0% (6/8) 
0.0% (0/8) 
12.5% (1/8) 
87.5% (7/8) 
0.0% (0/8) 
12.5% (1/8) 
87.5% (7/8) 
0.0% (0/8) 
SETPEG (N=8) 
25.0% (2/8) 
75.0% (6/8) 
0.0% (0/8) 
25.0% (2/8) 
75.0% (6/8) 
0.0% (0/8) 
37.5% (3/8) 
62.5% (5/8) 
0.0% (0/8) 
SWEP (N=4) 
25.0% (1/4) 
75.0% (3/4) 
0.0% (0/4) 
0.0% (0/4) 
75.0% (3/4) 
25.0% (1/4) 
25.0% (1/4) 
75.0% (3/4) 
0.0% (0/4) 
SWIPE (N=9) 
33.3% (3/9) 
66.7% (6/9) 
0.0% (0/9) 
11.1% (1/9) 
88.9% (8/9) 
0.0% (0/9) 
11.1% (1/9) 
77.8% (7/9) 
11.1% (1/9) 
SWTPEG (N=7) 
14.3% (1/7) 
85.7% (6/7) 
0.0% (0/7) 
14.3% (1/7) 
85.7% (6/7) 
0.0% (0/7) 
14.3% (1/7) 
71.4% (5/7) 
14.3% (1/7) 
TEN (N=6) 
16.7% (1/6) 
83.3% (5/6) 
0.0% (0/6) 
16.7% (1/6) 
83.3% (5/6) 
0.0% (0/6) 
16.7% (1/6) 
83.3% (5/6) 
0.0% (0/6) 
WPNN (N=9) 
22.2% (2/9) 
77.8% (7/9) 
0.0% (0/9) 
22.2% (2/9) 
77.8% (7/9) 
0.0% (0/9) 
11.1% (1/9) 
88.9% (8/9) 
0.0% (0/9) 
YPEN (N=9) 
22.2% (2/9) 
77.8% (7/9) 
0.0% (0/9) 
11.1% (1/9) 
88.9% (8/9) 
0.0% (0/9) 
11.1% (1/9) 
88.9% (8/9) 
0.0% (0/9) 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
37 
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=136) 
58.1% (79/136) 
40.4% (55/136) 
1.5% (2/136) 
England (N=131) 
56.5% (74/131) 
42.0% (55/131) 
1.5% (2/131) 
Wales (N=5) 
100% (5/5) 
0.0% (0/5) 
0.0% (0/5) 
 
 
 
 
BRPNF (N=13) 
61.5% (8/13) 
30.8% (4/13) 
7.7% (1/13) 
CEWT (N=5) 
100% (5/5) 
0.0% (0/5) 
0.0% (0/5) 
EPEN (N=14) 
42.9% (6/14) 
57.1% (8/14) 
0.0% (0/14) 
EPIC (N=9) 
33.3% (3/9) 
66.7% (6/9) 
0.0% (0/9) 
NTPEN (N=16) 
50.0% (8/16) 
50.0% (8/16) 
0.0% (0/16) 
NWEIG (N=12) 
58.3% (7/12) 
33.3% (4/12) 
8.3% (1/12) 
ORENG (N=7) 
71.4% (5/7) 
28.6% (2/7) 
0.0% (0/7) 
PENNEC (N=8) 
50.0% (4/8) 
50.0% (4/8) 
0.0% (0/8) 
SETPEG (N=8) 
37.5% (3/8) 
62.5% (5/8) 
0.0% (0/8) 
SWEP (N=4) 
100% (4/4) 
0.0% (0/4) 
0.0% (0/4) 
SWIPE (N=9) 
66.7% (6/9) 
33.3% (3/9) 
0.0% (0/9) 
SWTPEG (N=7) 
85.7% (6/7) 
14.3% (1/7) 
0.0% (0/7) 
TEN (N=6) 
50.0% (3/6) 
50.0% (3/6) 
0.0% (0/6) 
WPNN (N=9) 
66.7% (6/9) 
33.3% (3/9) 
0.0% (0/9) 
YPEN (N=9) 
55.6% (5/9) 
44.4% (4/9) 
0.0% (0/9) 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
38 
Service contact  
 
95.6% (130/136) of Health Boards and Trusts were able to provide specialist advice between 
scheduled reviews across England and Wales, (Table 24).  Table 25/Figure 12 shows 48.5% 
(66/136) of the Health Boards and Trusts that provided specialist advice during reviews reported 
that the service was available all weekdays for all 52 weeks of the year.   
 
In 7.4% 10/136 of Health Boards and Trusts this service was available all weekdays and out of 
hours for 52 weeks of the year. 28.7% (39/136) Health Boards and Trusts reported to provide this 
service on every weekday but for a part of the year.   
 
Figure 13 shows a comparison of availability of specialist advice between scheduled reviews in 
Round 3 April 2018 and November 2019. 
 
 
 
Figure 12: Availability of specialist advice between scheduled reviews (n=136). 
 
0.7%
48.5%
7.4%
9.6%
28.7%
0.7%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
Some weekdays
All weekdays
All weekdays and out of
hours
Percentage of Health Boards and Trusts 
Available 52 weeks of the year
Not available 52 weeks of the year

Appendix: Epilepsy12 2019 Organisational full audit results 
 
39 
 
 
Figure 13:  Percentage availability of specialist advice between scheduled reviews in Round 3 
April 2018 and November 2019. 
 
52.3% (68/130) of Health Boards and Trusts that reported to provide specialist advice between 
scheduled reviews described a typical response time of same or next weekday, (Table 26/Figure 
14).  
 
Figure 15 shows a comparison of the typical response time for specialist advice in Round 3 April 
2018 and November 2019.  Table 27/ Figure 16 shows that 46.2% (60/130) of initial specialist 
advice was ‘typically’ provided by an epilepsy specialist nurse and 40.8% (53/130) were by a 
consultant paediatrician with expertise in epilepsy. 
 
In the 11.5% (15/136) 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 
(8/130); a combination of all three (5/130); a community paediatrician (1/130); a named or on call 
paediatrician (1/130).  
 
Figure 17 shows a comparison of professionals who ‘typically’ provided initial specialist advice in 
Round 3 April 2018 and November 2019. 
 
76.5% (104/136) 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). 
0.7%
4.1%
48.5%
49.3%
7.4%
7.4%
9.6%
10.1%
28.7%
25.7%
0.7%
0.7%
0%
10%
20%
30%
40%
50%
60%
70%
80%
Round 3
Nov 2019
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Apr 2018
Round 3
Nov 2019
Round 3
Apr 2018
Some weekdays
All weekdays
All weekdays and out of hours
Percentage of Health Boards and Trusts 
Available 52 weeks of the year
Not available 52 weeks of the year

Appendix: Epilepsy12 2019 Organisational full audit results 
 
40 
 
 
Figure 14: Typical response time for specialist advice (n=130) 
 
  
Figure 15:Typical response time for specialist advice in Round 3 April 2018 and November 2019  
7.7%
44.6%
36.9%
10.8%
0%
10%
20%
30%
40%
50%
Same weekday
Next weekday
3-4 weekdays
Within the working
week
Percentage of Health Boards and Trusts 
7.7%
44.6%
36.9%
10.8%
12.5%
39.6%
36.1%
11.8%
0%
10%
20%
30%
40%
50%
Same weekday
Next weekday
3-4 weekdays
Within the working
week
Percentage of Health Boards and Trusts
Round 3
Nov 2019
Round 3
Apr 2018

Appendix: Epilepsy12 2019 Organisational full audit results 
 
41 
 
 
Figure 16: Professional who ‘typically’ provides initial specialist advice (n=130). 
 
 
Figure 17: Professional who ‘typically’ provides initial specialist advice in Round 3 April 2018 and 
November 2019. 
 
 
40.8%
46.2%
1.5%
11.5%
0%
10%
20%
30%
40%
50%
Consultant
Paediatrician with
'expertise in
epilepsy'
Epilepst sepcialist
nurse
Paediatric
neurologist
Other
Percentage of Health Boards and Trusts 
40.8%
46.2%
1.5%
11.5%
43.8%
43.1%
2.1%
11.1%
0%
10%
20%
30%
40%
50%
Consultant
Paediatrician with
'expertise in epilepsy'
Epilepst sepcialist
nurse
Paediatric neurologist
Other
Percentage of Health Boards and Trusts 
Round 3
Nov 2019
Round 3
Apr 2018

Appendix: Epilepsy12 2019 Organisational full audit results 
 
42 
Table 24: Health Boards and Trusts providing specialist advice between 
scheduled reviews. 
 
Country/network 
Yes 
No 
England and Wales 
(N=136) 
95.6% (130/136) 
4.4% (6/136) 
England (N=131) 
95.4% (125/131) 
4.6% (6/131) 
Wales (N=5) 
100% (5/5) 
0.0% (0/5) 
 
 
 
BRPNF (N=13) 
84.6% (11/13) 
15.4% (2/13) 
CEWT (N=5) 
80.0% (4/5) 
20.0% (1/5) 
EPEN (N=14) 
100% (14/14) 
0.0% (0/14) 
EPIC (N=9) 
100% (9/9) 
0.0% (0/9) 
NTPEN (N=16) 
100% (16/16) 
0.0% (0/16) 
NWEIG (N=12) 
100% (12/12) 
0.0% (0/12) 
ORENG (N=7) 
100% (7/7) 
0.0% (0/7) 
PENNEC (N=8) 
100% (8/8) 
0.0% (0/8) 
SETPEG (N=8) 
87.5% (7/8) 
12.5% (1/8) 
SWEP (N=4) 
100% (4/4) 
0.0% (0/4) 
SWIPE (N=9) 
100% (9/9) 
0.0% (0/9) 
SWTPEG (N=7) 
85.7% (6/7) 
14.3% (1/7) 
TEN (N=6) 
100% (6/6) 
0.0% (0/6) 
WPNN (N=9) 
88.9% (8/9) 
11.1% (1/9) 
YPEN (N=9) 
100% (9/9) 
0.0% (0/9) 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
43 
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=136) 
0.7% (1/136) 
48.5% (66/136) 
7.4% (10/136) 
9.6% (13/136) 
28.7% (39/136) 
0.7% (1/136) 
England (N=131) 
0.8% (1/131) 
47.3% (62/131) 
7.6% (10/131) 
9.2% (12/131) 
29.8% (39/131) 
0.8% (1/131) 
Wales (N=5) 
0.0% (0/5) 
80.0% (4/5) 
0.0% (0/5) 
20.0% (1/5) 
0.0% (0/5) 
0.0% (0/5) 
 
 
 
 
 
 
 
BRPNF (N=13) 
0.0% (0/13) 
38.5% (5/13) 
0.0% (0/13) 
0.0% (0/13) 
46.2% (6/13) 
0.0% (0/13) 
CEWT (N=5) 
0.0% (0/5) 
80.0% (4/5) 
0.0% (0/5) 
0.0% (0/5) 
0.0% (0/5) 
0.0% (0/5) 
EPEN (N=14) 
0.0% (0/14) 
42.9% (6/14) 
0.0% (0/14) 
0.0% (0/14) 
57.1% (8/14) 
0.0% (0/14) 
EPIC (N=9) 
0.0% (0/9) 
77.8% (7/9) 
0.0% (0/9) 
11.1% (1/9) 
11.1% (1/9) 
0.0% (0/9) 
NTPEN (N=16) 
0.0% (0/16) 
43.8% (7/16) 
12.5% (2/16) 
12.5% (2/16) 
31.3% (5/16) 
0.0% (0/16) 
NWEIG (N=12) 
0.0% (0/12) 
75.0% (9/12) 
8.3% (1/12) 
8.3% (1/12) 
8.3% (1/12) 
0.0% (0/12) 
ORENG (N=7) 
0.0% (0/7) 
57.1% (4/7) 
14.3% (1/7) 
0.0% (0/7) 
28.6% (2/7) 
0.0% (0/7) 
PENNEC (N=8) 
12.5% (1/8) 
25.0% (2/8) 
25.0% (2/8) 
12.5% (1/8) 
25.0% (2/8) 
0.0% (0/8) 
SETPEG (N=8) 
0.0% (0/8) 
25.0% (2/8) 
0.0% (0/8) 
0.0% (0/8) 
62.5% (5/8) 
0.0% (0/8) 
SWEP (N=4) 
0.0% (0/4) 
75.0% (3/4) 
0.0% (0/4) 
25.0% (1/4) 
0.0% (0/4) 
0.0% (0/4) 
SWIPE (N=9) 
0.0% (0/9) 
22.2% (2/9) 
11.1% (1/9) 
66.7% (6/9) 
0.0% (0/9) 
0.0% (0/9) 
SWTPEG (N=7) 
0.0% (0/7) 
14.3% (1/7) 
14.3% (1/7) 
14.3% (1/7) 
28.6% (2/7) 
14.3% (1/7) 
TEN (N=6) 
0.0% (0/6) 
33.3% (2/6) 
33.3% (2/6) 
0.0% (0/6) 
33.3% (2/6) 
0.0% (0/6) 
WPNN (N=9) 
0.0% (0/9) 
55.6% (5/9) 
0.0% (0/9) 
0.0% (0/9) 
33.3% (3/9) 
0.0% (0/9) 
YPEN (N=9) 
0.0% (0/9) 
77.8% (7/9) 
0.0% (0/9) 
0.0% (0/9) 
22.2% (2/9) 
0.0% (0/9) 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
44 
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=130) 
7.7% (10/130) 
44.6% (58/130) 
36.9% (48/130) 
10.8% (14/130) 
England (N=125) 
8.0% (10/125) 
45.6% (57/125) 
36.0% (45/125) 
10.4% (13/125) 
Wales (N=5) 
0.0% (0/5) 
20.0% (1/5) 
60.0% (3/5) 
20.0% (1/5) 
 
 
 
 
 
BRPNF (N=11) 
0.0% (0/11) 
36.4% (4/11) 
45.5% (5/11) 
18.2% (2/11) 
CEWT (N=4) 
25.0% (1/4) 
50.0% (2/4) 
25.0% (1/4) 
0.0% (0/4) 
EPEN (N=14) 
0.0% (0/14) 
42.9% (6/14) 
50.0% (7/14) 
7.1% (1/14) 
EPIC (N=9) 
0.0% (0/9) 
66.7% (6/9) 
22.2% (2/9) 
11.1% (1/9) 
NTPEN (N=16) 
18.8% (3/16) 
31.3% (5/16) 
25.0% (4/16) 
25.0% (4/16) 
NWEIG (N=12) 
8.3% (1/12) 
66.7% (8/12) 
25.0% (3/12) 
0.0% (0/12) 
ORENG (N=7) 
28.6% (2/7) 
42.9% (3/7) 
14.3% (1/7) 
14.3% (1/7) 
PENNEC (N=8) 
0.0% (0/8) 
50.0% (4/8) 
25.0% (2/8) 
25.0% (2/8) 
SETPEG (N=7) 
0.0% (0/7) 
42.9% (3/7) 
42.9% (3/7) 
14.3% (1/7) 
SWEP (N=4) 
0.0% (0/4) 
0.0% (0/4) 
75.0% (3/4) 
25.0% (1/4) 
SWIPE (N=9) 
11.1% (1/9) 
33.3% (3/9) 
44.4% (4/9) 
11.1% (1/9) 
SWTPEG (N=6) 
0.0% (0/6) 
83.3% (5/6) 
16.7% (1/6) 
0.0% (0/6) 
TEN (N=6) 
0.0% (0/6) 
33.3% (2/6) 
66.7% (4/6) 
0.0% (0/6) 
WPNN (N=8) 
12.5% (1/8) 
25.0% (2/8) 
62.5% (5/8) 
0.0% (0/8) 
YPEN (N=9) 
11.1% (1/9) 
55.6% (5/9) 
33.3% (3/9) 
0.0% (0/9) 
 
 
 
 
 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
45 
Table 27: Professional who ‘typically’ provides initial specialist advice.  
 
Country/network 
ESN 
Consultant with 
‘expertise in 
epilepsy’ 
Paediatric 
neurologist 
Other 
 England and 
Wales (N=130) 
46.2% (60/130) 
40.8% (53/130) 
1.5% (2/130) 
11.5% (15/130) 
England (N=125) 
46.4% (58/125) 
40.0% (50/125) 
1.6% (2/125) 
12.0% (15/125) 
Wales (N=5) 
40.0% (2/5) 
60.0% (3/5) 
0.0% (0/5) 
0.0% (0/5) 
 
 
 
 
 
BRPNF (N=11) 
27.3% (3/11) 
45.5% (5/11) 
0.0% (0/11) 
27.3% (3/11) 
CEWT (N=4) 
50.0% (2/4) 
0.0% (0/4) 
25.0% (1/4) 
25.0% (1/4) 
EPEN (N=14) 
50.0% (7/14) 
50.0% (7/14) 
0.0% (0/14) 
0.0% (0/14) 
EPIC (N=9) 
66.7% (6/9) 
33.3% (3/9) 
0.0% (0/9) 
0.0% (0/9) 
NTPEN (N=16) 
50.0% (8/16) 
43.8% (7/16) 
6.3% (1/16) 
0.0% (0/16) 
NWEIG (N=12) 
41.7% (5/12) 
50.0% (6/12) 
0.0% (0/12) 
8.3% (1/12) 
ORENG (N=7) 
57.1% (4/7) 
28.6% (2/7) 
0.0% (0/7) 
14.3% (1/7) 
PENNEC (N=8) 
25.0% (2/8) 
75.0% (6/8) 
0.0% (0/8) 
0.0% (0/8) 
SETPEG (N=7) 
57.1% (4/7) 
14.3% (1/7) 
0.0% (0/7) 
28.6% (2/7) 
SWEP (N=4) 
50.0% (2/4) 
50.0% (2/4) 
0.0% (0/4) 
0.0% (0/4) 
SWIPE (N=9) 
33.3% (3/9) 
44.4% (4/9) 
0.0% (0/9) 
22.2% (2/9) 
SWTPEG (N=6) 
50.0% (3/6) 
33.3% (2/6) 
0.0% (0/6) 
16.7% (1/6) 
TEN (N=6) 
33.3% (2/6) 
50.0% (3/6) 
0.0% (0/6) 
16.7% (1/6) 
WPNN (N=8) 
62.5% (5/8) 
25.0% (2/8) 
0.0% (0/8) 
12.5% (1/8) 
YPEN (N=9) 
44.4% (4/9) 
33.3% (3/9) 
0.0% (0/9) 
22.2% (2/9) 
 
 
 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
46 
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=136) 
76.5% (104/136) 
23.5% (32/136) 
England (N=131) 
75.6% (99/131) 
24.4% (32/131) 
Wales (N=5) 
100% (5/5) 
0.0% (0/5) 
 
 
 
BRPNF (N=13) 
61.5% (8/13) 
38.5% (5/13) 
CEWT (N=5) 
60.0% (3/5) 
40.0% (2/5) 
EPEN (N=14) 
85.7% (12/14) 
14.3% (2/14) 
EPIC (N=9) 
88.9% (8/9) 
11.1% (1/9) 
NTPEN (N=16) 
81.3% (13/16) 
18.8% (3/16) 
NWEIG (N=12) 
91.7% (11/12) 
8.3% (1/12) 
ORENG (N=7) 
71.4% (5/7) 
28.6% (2/7) 
PENNEC (N=8) 
50.0% (4/8) 
50.0% (4/8) 
SETPEG (N=8) 
75.0% (6/8) 
25.0% (2/8) 
SWEP (N=4) 
100% (4/4) 
0.0% (0/4) 
SWIPE (N=9) 
77.8% (7/9) 
22.2% (2/9) 
SWTPEG (N=7) 
71.4% (5/7) 
28.6% (2/7) 
TEN (N=6) 
83.3% (5/6) 
16.7% (1/6) 
WPNN (N=9) 
66.7% (6/9) 
33.3% (3/9) 
YPEN (N=9) 
77.8% (7/9) 
22.2% (2/9) 
 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
47 
Transition 
 
Table 29 shows 20.6% (28/136) of Health Boards and Trusts did not have agreed referral 
pathway for young people to adult services. 36.8% (50/136) of Health Boards and Trusts had an 
outpatient clinic specifically for young people with epilepsies, (Table 30). The median age of 
acceptance of young people into adult clinics was 15 years with a minimum acceptance age of 
11 years and a maximum acceptance age of 18 as shown on Table 31. 
 
Figure 18 shows the proportion of Health Boards and Trusts with specific outpatient clinic for 
'young people' with epilepsies in Rounds 1, Round 2, Round 3 April 2018 and November 2019. 
 
 
Figure 18: Clinics for young people across Rounds 1, Round 2, Round 3 April 2018 and Round 3 
November 2019. 
 
55.9% (76/136) Health Boards and Trusts reported to have outpatient service for epilepsy where 
there is a presence of both adult and paediatric professionals. Figure 19/Table 33 shows 53.9% 
(41/76) had single joint appointments, 9.2% (7/76) have a series of several joint appointments, 
27.6% (21/76) have a flexible approach that included a mixture of joint or individual reviews. 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, 
19.0%
81.0%
27.3%
72.7%
0%
20%
40%
60%
80%
100%
Yes
No
Yes
No
Round 1
Nov 2009
Round 2
Jan 2014
Percentage of epilepsy units
35.8%
64.2%
36.8%
63.2%
0%
20%
40%
60%
80%
100%
Yes
No
Yes
No
Round 3
Apr 2018
Round 3
Nov 2019
Percentage of Trusts and Health Boards 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
48 
• 
Joint transition appointment /Sees Neurologist/back to paediatrics for final 
appointment. 
 
Figure 20 shows a comparison of composition of joint transition in Round 3 April 2018 and 
November 2019. The mean of the percentage of young people transferred to adult services 
who transitioned through the joint professional process was 72.1%. This ranged from 1% to 100% 
as shown in Table 34. 
 
Table 35/ Figure 23 shows 58.1% (79/136) of Health Boards and Trusts, used structured 
resources (for example Ready, Steady, Go) to support transition to adult services. 
 
 
 
Figure 19: Composition of the joint transition process (n=76). 
 
 
 
53.9%
9.2%
27.6%
9.2%
0%
10%
20%
30%
40%
50%
60%
Single joint
appointment
Several joint
appointments
Mix of joint and
individual
appointments
Other
Percentage of Health Boards and Trusts 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
49 
 
 
Figure 20: Composition of the joint transition process in Round 3 April 2018 and November 
2019. 
Figure 21 shows the various professionals who were routinely involved in transition or transfer 
to adult services. A majority of the Health Boards and Trusts 83.8% (114/136) had an adult 
neurologist supporting transition to adult services, whilst 54.4% (74/136) had an adult ESN 
supporting the transition as shown on Table 36.  Other responses included: 
 
• 
Adult Learning Disability Consultant, 
• 
Adult Learning Disability Psychiatrist, 
• 
Consultant Psychiatrist, 
• 
GP, 
• 
GP and Adult Neurologist, 
• 
GP with Epilepsy interest, 
• 
Education or social care, 
• 
Adult Learning Disability team, 
• 
Adult Learning Disability team/ adult rehab/ GP, 
• 
discussion with adult neurologist and neurophysiologist in Neurophysiology meeting, 
• 
Learning Disability transition nurses, 
• 
specific young people transition clinic with adult neurology, paediatric neurology and 
adult ESN - run by a different Trust, 
• 
Youth worker from an epilepsy charity may attend, 
• 
Learning Disability Partnership 
• 
Transition nurses, 
53.9%
9.2%
27.6%
9.2%
61.3%
6.3%
23.8%
8.8%
0%
10%
20%
30%
40%
50%
60%
70%
Single joint
appointment
Several joint
appointments
Mix of joint and
individual
appointments
Other
Percentage of Health Boards and 
Trusts 
Round 3
Nov 2019
Round 3
Apr 2018

Appendix: Epilepsy12 2019 Organisational full audit results 
 
50 
• 
Details of neurology specialist nurse contact and often offer ESN appointment at neuro 
hospital. 
 
Figure 22 shows a comparison of professionals who were routinely involved in transition or 
transfer to adult services in Round 3 April 2018 and November 2019. 
 
 
 
Figure 21: Professionals routinely involved in transition or transfer to adult services (n=136). 
 
 
 
 
Figure 22: Professionals routinely involved in transition or transfer to adult services in Round 3 
April 2018 and November 2019. 
83.8%
54.4%
14.7%
2.2%
12.5%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
Adult
neurologist
Adult ESN
Adult learning
difficulty
Youth worker
Other
Percentage of Health Boards and Trusts
83.8%
54.4%
14.7%
2.2%
12.5%
78.4%
51.4%
10.1%
2.0%
13.5%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
Adult
neurologist
Adult ESN
Adult learning
difficulty
Youth worker
Other
Percentage of Health Boards and Trusts 
Round 3
Nov 2019
Round 3
Apr 2018

Appendix: Epilepsy12 2019 Organisational full audit results 
 
51 
 
 
 
 
Figure 23: Percentage of Health Boards and Trusts that were using structured resources to 
support transition in Round 3 April 2018 and November 2019. 
 
 
58.1%
41.9%
51.4%
48.6%
0%
10%
20%
30%
40%
50%
60%
70%
Yes
No
Percentage of Health Boards and Trusts 
Round 3
Nov 2019
Round 3
Apr 2018

Appendix: Epilepsy12 2019 Organisational full audit results 
 
52 
 
Table 29: Health Boards and Trusts that had an agreed referral pathway to adult services. 
 
 
Country/network 
 
Yes 
 
No 
England and Wales (N=136) 
79.4% (108/136) 
20.6% (28/136) 
England (N=131) 
79.4% (104/131) 
20.6% (27/131) 
Wales (N=5) 
80.0% (4/5) 
20.0% (1/5) 
 
 
 
BRPNF (N=13) 
61.5% (8/13) 
38.5% (5/13) 
CEWT (N=5) 
80.0% (4/5) 
20.0% (1/5) 
EPEN (N=14) 
92.9% (13/14) 
7.1% (1/14) 
EPIC (N=9) 
88.9% (8/9) 
11.1% (1/9) 
NTPEN (N=16) 
75.0% (12/16) 
25.0% (4/16) 
NWEIG (N=12) 
75.0% (9/12) 
25.0% (3/12) 
ORENG (N=7) 
85.7% (6/7) 
14.3% (1/7) 
PENNEC (N=8) 
62.5% (5/8) 
37.5% (3/8) 
SETPEG (N=8) 
75.0% (6/8) 
25.0% (2/8) 
SWEP (N=4) 
75.0% (3/4) 
25.0% (1/4) 
SWIPE (N=9) 
66.7% (6/9) 
33.3% (3/9) 
SWTPEG (N=7) 
100% (7/7) 
0.0% (0/7) 
TEN (N=6) 
83.3% (5/6) 
16.7% (1/6) 
WPNN (N=9) 
77.8% (7/9) 
22.2% (2/9) 
YPEN (N=9) 
100% (9/9) 
0.0% (0/9) 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
53 
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=136) 
36.8% (50/136) 
63.2% (86/136) 
England (N=131) 
37.4% (49/131) 
62.6% (82/131) 
Wales (N=5) 
20.0% (1/5) 
80.0% (4/5) 
 
 
 
BRPNF (N=13) 
38.5% (5/13) 
61.5% (8/13) 
CEWT (N=5) 
60.0% (3/5) 
40.0% (2/5) 
EPEN (N=14) 
57.1% (8/14) 
42.9% (6/14) 
EPIC (N=9) 
22.2% (2/9) 
77.8% (7/9) 
NTPEN (N=16) 
31.3% (5/16) 
68.8% (11/16) 
NWEIG (N=12) 
50.0% (6/12) 
50.0% (6/12) 
ORENG (N=7) 
28.6% (2/7) 
71.4% (5/7) 
PENNEC (N=8) 
12.5% (1/8) 
87.5% (7/8) 
SETPEG (N=8) 
50.0% (4/8) 
50.0% (4/8) 
SWEP (N=4) 
25.0% (1/4) 
75.0% (3/4) 
SWIPE (N=9) 
33.3% (3/9) 
66.7% (6/9) 
SWTPEG (N=7) 
42.9% (3/7) 
57.1% (4/7) 
TEN (N=6) 
16.7% (1/6) 
83.3% (5/6) 
WPNN (N=9) 
55.6% (5/9) 
44.4% (4/9) 
YPEN (N=9) 
11.1% (1/9) 
88.9% (8/9) 
 
 
Table 31: Age at which the outpatient clinic typically accepted young 
people with epilepsies 
 
 
Country/network 
Mean age 
Median age 
Minimum 
age 
Maximum 
age 
England and Wales 
(N=50) 
14.7 
15.0 
11 
18 
England (N=49) 
14.6 
15.0 
11 
18 
Wales (N=1) 
16.0 
16.0 
16 
16 
 
 
 
 
 
BRPNF (N=5) 
14.8 
14.0 
14 
16 
CEWT (N=3) 
13.0 
13.0 
12 
14 
EPEN (N=8) 
14.8 
15.0 
13 
16 
EPIC (N=2) 
14.0 
14.0 
14 
14 
NTPEN (N=5) 
14.6 
15.0 
12 
17 
NWEIG (N=6) 
13.7 
14.0 
12 
16 
ORENG (N=2) 
16.0 
16.0 
16 
16 
PENNEC (N=1) 
14.0 
14.0 
14 
14 
SETPEG (N=4) 
16.0 
16.0 
15 
17 
SWEP (N=1) 
16.0 
16.0 
16 
16 
SWIPE (N=3) 
16.7 
16.0 
16 
18 
SWTPEG (N=3) 
14.7 
16.0 
12 
16 
TEN (N=1) 
11.0 
11.0 
11 
11 
WPNN (N=5) 
14.6 
14.0 
13 
16 
YPEN (N=1) 
15.0 
15.0 
15 
15 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
54 
Table 32: Health Boards and Trusts that had an 
outpatient service involving adult and paediatric 
professionals. 
Country/network 
Yes 
No 
England and Wales 
(N=136) 
55.9% (76/136) 
44.1% (60/136) 
England (N=131) 
55.0% (72/131) 
45.0% (59/131) 
Wales (N=5) 
80.0% (4/5) 
20.0% (1/5) 
 
 
 
BRPNF (N=13) 
61.5% (8/13) 
38.5% (5/13) 
CEWT (N=5) 
60.0% (3/5) 
40.0% (2/5) 
EPEN (N=14) 
50.0% (7/14) 
50.0% (7/14) 
EPIC (N=9) 
44.4% (4/9) 
55.6% (5/9) 
NTPEN (N=16) 
68.8% (11/16) 
31.3% (5/16) 
NWEIG (N=12) 
66.7% (8/12) 
33.3% (4/12) 
ORENG (N=7) 
71.4% (5/7) 
28.6% (2/7) 
PENNEC (N=8) 
12.5% (1/8) 
87.5% (7/8) 
SETPEG (N=8) 
50.0% (4/8) 
50.0% (4/8) 
SWEP (N=4) 
75.0% (3/4) 
25.0% (1/4) 
SWIPE (N=9) 
66.7% (6/9) 
33.3% (3/9) 
SWTPEG (N=7) 
71.4% (5/7) 
28.6% (2/7) 
TEN (N=6) 
16.7% (1/6) 
83.3% (5/6) 
WPNN (N=9) 
55.6% (5/9) 
44.4% (4/9) 
YPEN (N=9) 
55.6% (5/9) 
44.4% (4/9) 
 
 
Table 33: Structure of outpatient service involving both adult and paediatric 
professionals. 
 
Country/network 
Several joint 
appointments 
Single joint 
appointments 
Mixed (joint 
and 
individual) 
Other 
England and 
Wales (N=76) 
9.2% (7/76) 
53.9% (41/76) 
27.6% (21/76) 
9.2% (7/76) 
England (N=72) 
9.7% (7/72) 
55.6% (40/72) 
25.0% (18/72) 
9.7% (7/72) 
Wales (N=4) 
0.0% (0/4) 
25.0% (1/4) 
75.0% (3/4) 
0.0% (0/4) 
 
 
 
 
 
BRPNF (N=8) 
12.5% (1/8) 
62.5% (5/8) 
25.0% (2/8) 
0.0% (0/8) 
CEWT (N=3) 
66.7% (2/3) 
0.0% (0/3) 
0.0% (0/3) 
33.3% (1/3) 
EPEN (N=7) 
0.0% (0/7) 
42.9% (3/7) 
42.9% (3/7) 
14.3% (1/7) 
EPIC (N=4) 
0.0% (0/4) 
50.0% (2/4) 
25.0% (1/4) 
25.0% (1/4) 
NTPEN (N=11) 
9.1% (1/11) 
63.6% (7/11) 
18.2% (2/11) 
9.1% (1/11) 
NWEIG (N=8) 
0.0% (0/8) 
87.5% (7/8) 
12.5% (1/8) 
0.0% (0/8) 
ORENG (N=5) 
0.0% (0/5) 
60.0% (3/5) 
40.0% (2/5) 
0.0% (0/5) 
PENNEC (N=1) 
0.0% (0/1) 
100% (1/1) 
0.0% (0/1) 
0.0% (0/1) 
SETPEG (N=4) 
0.0% (0/4) 
50.0% (2/4) 
50.0% (2/4) 
0.0% (0/4) 
SWEP (N=3) 
0.0% (0/3) 
33.3% (1/3) 
66.7% (2/3) 
0.0% (0/3) 
SWIPE (N=6) 
0.0% (0/6) 
33.3% (2/6) 
66.7% (4/6) 
0.0% (0/6) 
SWTPEG (N=5) 
20.0% (1/5) 
20.0% (1/5) 
20.0% (1/5) 
40.0% (2/5) 
TEN (N=1) 
0.0% (0/1) 
0.0% (0/1) 
0.0% (0/1) 
100% (1/1) 
WPNN (N=5) 
40.0% (2/5) 
40.0% (2/5) 
20.0% (1/5) 
0.0% (0/5) 
YPEN (N=5) 
0.0% (0/5) 
100% (5/5) 
0.0% (0/5) 
0.0% (0/5) 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
55 
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=76) 
 
72.1% 
 
1.0% 
 
100.0% 
England (N=72) 
73.0% 
1.0% 
100.0% 
Wales (N=4) 
56.3% 
30.0% 
80.0% 
 
 
 
 
BRPNF (N=8) 
79.4% 
10.0% 
100.0% 
CEWT (N=3) 
43.3% 
30.0% 
70.0% 
EPEN (N=7) 
79.8% 
1.0% 
100.0% 
EPIC (N=4) 
75.0% 
20.0% 
100.0% 
NTPEN (N=11) 
65.1% 
1.0% 
100.0% 
NWEIG (N=8) 
75.8% 
50.0% 
100.0% 
ORENG (N=5) 
81.0% 
40.0% 
95.0% 
PENNEC (N=1) 
100.0% 
100.0% 
100.0% 
SETPEG (N=4) 
72.5% 
50.0% 
100.0% 
SWEP (N=3) 
48.3% 
30.0% 
65.0% 
SWIPE (N=6) 
58.3% 
10.0% 
90.0% 
SWTPEG (N=5) 
86.0% 
50.0% 
100.0% 
TEN (N=1) 
100.0% 
100.0% 
100.0% 
WPNN (N=5) 
60.0% 
25.0% 
100.0% 
YPEN (N=5) 
83.0% 
55.0% 
100.0% 
 
Table 35: Health Boards and Trusts that were using structured 
resources to support transition. 
 
Country/network 
Yes 
No 
England and Wales 
(N=136) 
58.1% (79/136) 
41.9% (57/136) 
England (N=131) 
59.5% (78/131) 
40.5% (53/131) 
Wales (N=5) 
20.0% (1/5) 
80.0% (4/5) 
 
 
 
BRPNF (N=13) 
46.2% (6/13) 
53.8% (7/13) 
CEWT (N=5) 
60.0% (3/5) 
40.0% (2/5) 
EPEN (N=14) 
64.3% (9/14) 
35.7% (5/14) 
EPIC (N=9) 
22.2% (2/9) 
77.8% (7/9) 
NTPEN (N=16) 
43.8% (7/16) 
56.3% (9/16) 
NWEIG (N=12) 
75.0% (9/12) 
25.0% (3/12) 
ORENG (N=7) 
57.1% (4/7) 
42.9% (3/7) 
PENNEC (N=8) 
62.5% (5/8) 
37.5% (3/8) 
SETPEG (N=8) 
37.5% (3/8) 
62.5% (5/8) 
SWEP (N=4) 
25.0% (1/4) 
75.0% (3/4) 
SWIPE (N=9) 
88.9% (8/9) 
11.1% (1/9) 
SWTPEG (N=7) 
71.4% (5/7) 
28.6% (2/7) 
TEN (N=6) 
66.7% (4/6) 
33.3% (2/6) 
WPNN (N=9) 
66.7% (6/9) 
33.3% (3/9) 
YPEN (N=9) 
77.8% (7/9) 
22.2% (2/9) 
 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
56 
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=136) 
54.4% (74/136) 
14.7% (20/136) 
83.8% (114/136) 
2.2% (3/136) 
12.5% (17/136) 
England (N=131) 
53.4% (70/131) 
13% (17/131) 
83.2% (109/131) 
2.3% (3/131) 
11.5% (15/131) 
Wales (N=5) 
80.0% (4/5) 
60.0% (3/5) 
100% (5/5) 
0.0% (0/5) 
40.0% (2/5) 
 
 
 
 
 
 
BRPNF (N=13) 
38.5% (5/13) 
7.7% (1/13) 
76.9% (10/13) 
0.0% (0/13) 
7.7% (1/13) 
CEWT (N=5) 
80.0% (4/5) 
20.0% (1/5) 
60.0% (3/5) 
0.0% (0/5) 
0.0% (0/5) 
EPEN (N=14) 
50.0% (7/14) 
21.4% (3/14) 
92.9% (13/14) 
14.3% (2/14) 
28.6% (4/14) 
EPIC (N=9) 
33.3% (3/9) 
0.0% (0/9) 
88.9% (8/9) 
0.0% (0/9) 
33.3% (3/9) 
NTPEN (N=16) 
37.5% (6/16) 
0.0% (0/16) 
93.8% (15/16) 
0.0% (0/16) 
6.3% (1/16) 
NWEIG (N=12) 
58.3% (7/12) 
0.0% (0/12) 
66.7% (8/12) 
0.0% (0/12) 
0.0% (0/12) 
ORENG (N=7) 
85.7% (6/7) 
57.1% (4/7) 
100% (7/7) 
0.0% (0/7) 
14.3% (1/7) 
PENNEC (N=8) 
37.5% (3/8) 
25.0% (2/8) 
75.0% (6/8) 
0.0% (0/8) 
25.0% (2/8) 
SETPEG (N=8) 
50.0% (4/8) 
12.5% (1/8) 
100% (8/8) 
0.0% (0/8) 
0.0% (0/8) 
SWEP (N=4) 
75.0% (3/4) 
75.0% (3/4) 
100% (4/4) 
0.0% (0/4) 
50.0% (2/4) 
SWIPE (N=9) 
66.7% (6/9) 
22.2% (2/9) 
55.6% (5/9) 
0.0% (0/9) 
0.0% (0/9) 
SWTPEG (N=7) 
57.1% (4/7) 
14.3% (1/7) 
100% (7/7) 
0.0% (0/7) 
0.0% (0/7) 
TEN (N=6) 
83.3% (5/6) 
0.0% (0/6) 
83.3% (5/6) 
0.0% (0/6) 
0.0% (0/6) 
WPNN (N=9) 
66.7% (6/9) 
11.1% (1/9) 
88.9% (8/9) 
11.1% (1/9) 
22.2% (2/9) 
YPEN (N=9) 
55.6% (5/9) 
11.1% (1/9) 
77.8% (7/9) 
0.0% (0/9) 
11.1% (1/9) 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
57 
Mental health  
 
Figure 24 shows the proportion of Health Boards and Trusts that routinely provide formal 
screening services. 77.2% (105/136) of Health Boards and Trusts undertook no formal screening 
for Attention Deficit Hyperactivity Disorder (ADHD), Autistic Spectrum Disorder (ASD) or 
mental health disorders. Only 14.7% (20/136) Health Boards and Trusts routinely provide formal 
screening services for mental health disorders (Table 37).  
 
Figure 25 shows the comparison of formal screening services in Round 3 April 2018 and 
November 2019. 
 
 
Figure 24: Percentage of Health Boards and Trusts routinely providing formal screening services 
(n=136). 
17.6%
18.4%
14.7%
77.2%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
ADHD
ASD
Mental health
disorders
None
Percentage of Health Boards and 
Trusts 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
58 
 
Figure 25: Percentage of Health Boards and Trusts routinely providing formal screening 
services in Round 3 April 2018 and November 2019  
41.9% (57/136) of Health Boards 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 (8.1%) Connor’s Questionnaire,  
• 
10 (7.4%) SDQ (Strength and Difficulties Questionnaire), 
• 
7 (5.1%) Other, 
 
Other responses included: 
• 
Five point locally made questionnaire, 
• 
NICE signs and symptoms of ASD checklist, 
• 
PI-ED, 
• 
SNAP4, 
• 
Social skills teacher questionnaire, 
• 
York Questionnaire, Vanderbilt and department behaviour assessment questionnaire, 
• 
Wellness questionnaire, 
 
Figure 26 shows the proportion of Health Boards and Trusts that had agreed referral pathways 
for children and young people with mental health concerns. 42.6% (58/136) of Health Boards 
and Trusts did not have agreed referral pathways for children with mental health concerns. 
54.4% (74/136) of Health Boards and Trusts had agreed referral pathways for children with 
anxiety; 55.1% (75/136) for depression; 54.4% (74/136) for mood disorder; 37.5% (51/136) for 
non-epileptic attack disorder, 6.6% (9/136) for other mental health concerns (Table 39).  
17.6%
18.4%
14.7%
77.2%
23.6%
23.6%
19.6%
72.3%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
ADHD
ASD
Mental health
disorders
None
Percentage of Health Boards and Trusts 
Round 3
Nov 2019
Round 3
Apr 2018

Appendix: Epilepsy12 2019 Organisational full audit results 
 
59 
 
Other responses included: 
• 
Attention Deficit Hyperactivity Disorder (ADHD), 
• 
Behavioural and emotional, 
• 
No agreed pathway, but we refer to Healthy Young Minds when we have these 
concerns, 
• 
Not specific to epilepsy, 
• 
Referral to Local Healthy Young Minds team, 
• 
A flexible approach with in-house mental health and adolescent medicine teams, 
• 
Referral to psychology for difficulty in coping with diagnosis for patient and family 
• 
Referral to CAMHS for other mental health concerns, 
• 
Tics or Tourette's. 
 
 
 
Figure 26: Percentage of Health Boards and Trusts with agreed referral pathways for children 
with mental health concerns (n=136) 
 
14.0% 19/136 Health Boards and Trusts were able to facilitate mental health provision within 
epilepsy clinics, (Table 40). 10 of these had epilepsy clinics where mental health professionals 
can provide direct co-located clinical care and 12 had MDT meetings where epilepsy and 
mental health professionals discuss individual patients, (Table 41).   
 
54.4%
55.1%
54.4%
37.5%
6.6%
42.6%
0%
10%
20%
30%
40%
50%
60%
Anxiety
Depression
Mood disorder Non-epileptic
attack disorder
Other
None of the
above
Percentage of Health Boards and Trusts 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
60 
7.7% (9/117) of the Health Boards and Trusts that were not able to facilitate mental health 
provision within epilepsy clinics had an action plan describing steps towards co-located mental 
health provision, (Table 42). 
 
Figure 27 (below) shows the percentage of Health Boards and Trusts that could refer children 
and young people to mental health services, either within or outside of your Health Board and 
Trust where required. 79.4% (108/136) of Health Boards and Trusts were able to refer to clinical 
psychology services; 92.6% (126/136) to psychiatric services; 46.3% (63/136) to education 
psychology; 52.2% (71/136) to neuropsychology services and 86.8% (118/136) to formal 
developmental assessment.  
 
4.4% (6/136) were not able to offer referrals to mental health services, (Table 43).  
 
Figure 28 shows the comparison of ability to refer to mental health services in Round 3 April 
2018 and November 2019. 
 
  
 
Figure 27: Percentage of Health Boards and Trusts that could refer to mental health services 
(n=136). 
4.4%
46.3%
52.2%
79.4%
86.8%
92.6%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
None
Educational psychology
Neuropsychology
Clinical psychology
Formal developmental
Psychiatric
Percentage of Health Boards and Trusts 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
61 
 
Figure 28: Percentage of Health Boards and Trusts that could refer to mental health services in 
Round 3 April 2018 and November 2019.
5.4%
44.9%
48.3%
75.5%
83.7%
89.8%
4.4%
46.3%
52.2%
79.4%
86.8%
92.6%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
None
Educational psychology
Neuropsychology
Clinical psychology
Formal developmental
Psychiatric
Percentage of Health Boards and Trusts 
Round 3
Nov 2019
Round 3
Apr 2018

Appendix: Epilepsy12 2019 Organisational full audit results 
 
62 
Table 37: Health Boards and Trusts that formally screen for diagnoses related to epilepsy. 
 
Country/network 
ADHD 
ASD 
Mental health 
disorders 
None 
England and Wales 
(N=136) 
17.6% (24/136) 
18.4% (25/136) 
14.7% (20/136) 
77.2% (105/136) 
England (N=131) 
18.3% (24/131) 
19.1% (25/131) 
15.3% (20/131) 
76.3% (100/131) 
Wales (N=5) 
0.0% (0/5) 
0.0% (0/5) 
0.0% (0/5) 
100% (5/5) 
 
 
 
 
 
BRPNF (N=13) 
30.8% (4/13) 
30.8% (4/13) 
15.4% (2/13) 
69.2% (9/13) 
CEWT (N=5) 
40.0% (2/5) 
40.0% (2/5) 
20.0% (1/5) 
60.0% (3/5) 
EPEN (N=14) 
7.1% (1/14) 
7.1% (1/14) 
7.1% (1/14) 
85.7% (12/14) 
EPIC (N=9) 
11.1% (1/9) 
11.1% (1/9) 
0.0% (0/9) 
88.9% (8/9) 
NTPEN (N=16) 
18.8% (3/16) 
12.5% (2/16) 
18.8% (3/16) 
75.0% (12/16) 
NWEIG (N=12) 
25.0% (3/12) 
16.7% (2/12) 
25.0% (3/12) 
66.7% (8/12) 
ORENG (N=7) 
42.9% (3/7) 
42.9% (3/7) 
28.6% (2/7) 
57.1% (4/7) 
PENNEC (N=8) 
25.0% (2/8) 
25.0% (2/8) 
25.0% (2/8) 
75.0% (6/8) 
SETPEG (N=8) 
12.5% (1/8) 
12.5% (1/8) 
12.5% (1/8) 
87.5% (7/8) 
SWEP (N=4) 
0.0% (0/4) 
0.0% (0/4) 
0.0% (0/4) 
100% (4/4) 
SWIPE (N=9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
100% (9/9) 
SWTPEG (N=7) 
14.3% (1/7) 
28.6% (2/7) 
28.6% (2/7) 
57.1% (4/7) 
TEN (N=6) 
16.7% (1/6) 
33.3% (2/6) 
0.0% (0/6) 
66.7% (4/6) 
WPNN (N=9) 
11.1% (1/9) 
11.1% (1/9) 
11.1% (1/9) 
88.9% (8/9) 
YPEN (N=9) 
11.1% (1/9) 
22.2% (2/9) 
22.2% (2/9) 
77.8% (7/9) 
 
 
 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
63 
Table 38: Health Boards and Trusts using particular mental health screening questionnaires. 
Country/ 
network 
BDI – Beck 
Depression 
Inventory 
Connor’s 
Questionnaire 
Emotional 
Thermometers 
Tool 
GAD – 
Generalised 
Anxiety 
Disorder 
GAD 2 – 
Generalised 
Anxiety 
Disorder 2 
GAD 7 – 
Generalised 
Anxiety 
Disorder GAD 7 
HADS – 
Hospital 
Anxiety and 
Depression 
Scale 
MFQ – Mood 
and Feelings 
Questionnaire 
(Child, Parent, 
adult versions) 
NDDI -E 
Neurological 
Disorders 
Depression 
Inventory for 
Epilepsy 
England and 
Wales (N=136) 
0.0% 
(0/136) 
8.1% (11/136) 
0.0% (0/136) 
0.0% (0/136) 
0.0% (0/136) 
0.0% (0/136) 
0.0% (0/136) 
0.0% (0/136) 
0.0% (0/136) 
England (N=131) 
0.0% 
(0/131) 
8.4% (11/131) 
0.0% (0/131) 
0.0% (0/131) 
0.0% (0/131) 
0.0% (0/131) 
0.0% (0/131) 
0.0% (0/131) 
0.0% (0/131) 
Wales (N=5) 
0.0% (0/5) 
0.0% (0/5) 
0.0% (0/5) 
0.0% (0/5) 
0.0% (0/5) 
0.0% (0/5) 
0.0% (0/5) 
0.0% (0/5) 
0.0% (0/5) 
 
 
 
 
 
 
 
 
 
 
BRPNF (N=13) 
0.0% (0/13) 
7.7% (1/13) 
0.0% (0/13) 
0.0% (0/13) 
0.0% (0/13) 
0.0% (0/13) 
0.0% (0/13) 
0.0% (0/13) 
0.0% (0/13) 
CEWT (N=5) 
0.0% (0/5) 
20.0% (1/5) 
0.0% (0/5) 
0.0% (0/5) 
0.0% (0/5) 
0.0% (0/5) 
0.0% (0/5) 
0.0% (0/5) 
0.0% (0/5) 
EPEN (N=14) 
0.0% (0/14) 
0.0% (0/14) 
0.0% (0/14) 
0.0% (0/14) 
0.0% (0/14) 
0.0% (0/14) 
0.0% (0/14) 
0.0% (0/14) 
0.0% (0/14) 
EPIC (N=9) 
0.0% (0/9) 
11.1% (1/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
NTPEN (N=16) 
0.0% (0/16) 
18.8% (3/16) 
0.0% (0/16) 
0.0% (0/16) 
0.0% (0/16) 
0.0% (0/16) 
0.0% (0/16) 
0.0% (0/16) 
0.0% (0/16) 
NWEIG (N=12) 
0.0% (0/12) 
8.3% (1/12) 
0.0% (0/12) 
0.0% (0/12) 
0.0% (0/12) 
0.0% (0/12) 
0.0% (0/12) 
0.0% (0/12) 
0.0% (0/12) 
ORENG (N=7) 
0.0% (0/7) 
28.6% (2/7) 
0.0% (0/7) 
0.0% (0/7) 
0.0% (0/7) 
0.0% (0/7) 
0.0% (0/7) 
0.0% (0/7) 
0.0% (0/7) 
PENNEC (N=8) 
0.0% (0/8) 
0.0% (0/8) 
0.0% (0/8) 
0.0% (0/8) 
0.0% (0/8) 
0.0% (0/8) 
0.0% (0/8) 
0.0% (0/8) 
0.0% (0/8) 
SETPEG (N=8) 
0.0% (0/8) 
0.0% (0/8) 
0.0% (0/8) 
0.0% (0/8) 
0.0% (0/8) 
0.0% (0/8) 
0.0% (0/8) 
0.0% (0/8) 
0.0% (0/8) 
SWEP (N=4) 
0.0% (0/4) 
0.0% (0/4) 
0.0% (0/4) 
0.0% (0/4) 
0.0% (0/4) 
0.0% (0/4) 
0.0% (0/4) 
0.0% (0/4) 
0.0% (0/4) 
SWIPE (N=9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
SWTPEG (N=7) 
0.0% (0/7) 
0.0% (0/7) 
0.0% (0/7) 
0.0% (0/7) 
0.0% (0/7) 
0.0% (0/7) 
0.0% (0/7) 
0.0% (0/7) 
0.0% (0/7) 
TEN (N=6) 
0.0% (0/6) 
16.7% (1/6) 
0.0% (0/6) 
0.0% (0/6) 
0.0% (0/6) 
0.0% (0/6) 
0.0% (0/6) 
0.0% (0/6) 
0.0% (0/6) 
WPNN (N=9) 
0.0% (0/9) 
11.1% (1/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
YPEN (N=9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
64 
 
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=136) 
0.0% (0/136) 
7.4% (10/136) 
5.1% (7/136) 
41.9% (57/136) 
England (N=131) 
0.0% (0/131) 
7.6% (10/131) 
5.3% (7/131) 
42.0% (55/131) 
Wales (N=5) 
0.0% (0/5) 
0.0% (0/5) 
0.0% (0/5) 
40.0% (2/5) 
 
 
 
 
 
BRPNF (N=13) 
0.0% (0/13) 
15.4% (2/13) 
7.7% (1/13) 
30.8% (4/13) 
CEWT (N=5) 
0.0% (0/5) 
20.0% (1/5) 
0.0% (0/5) 
40.0% (2/5) 
EPEN (N=14) 
0.0% (0/14) 
0.0% (0/14) 
7.1% (1/14) 
50.0% (7/14) 
EPIC (N=9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
33.3% (3/9) 
NTPEN (N=16) 
0.0% (0/16) 
18.8% (3/16) 
6.3% (1/16) 
25.0% (4/16) 
NWEIG (N=12) 
0.0% (0/12) 
8.3% (1/12) 
8.3% (1/12) 
50.0% (6/12) 
ORENG (N=7) 
0.0% (0/7) 
0.0% (0/7) 
0.0% (0/7) 
42.9% (3/7) 
PENNEC (N=8) 
0.0% (0/8) 
0.0% (0/8) 
12.5% (1/8) 
50.0% (4/8) 
SETPEG (N=8) 
0.0% (0/8) 
0.0% (0/8) 
0.0% (0/8) 
50.0% (4/8) 
SWEP (N=4) 
0.0% (0/4) 
0.0% (0/4) 
0.0% (0/4) 
50.0% (2/4) 
SWIPE (N=9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
55.6% (5/9) 
SWTPEG (N=7) 
0.0% (0/7) 
14.3% (1/7) 
14.3% (1/7) 
28.6% (2/7) 
TEN (N=6) 
0.0% (0/6) 
16.7% (1/6) 
0.0% (0/6) 
33.3% (2/6) 
WPNN (N=9) 
0.0% (0/9) 
0.0% (0/9) 
11.1% (1/9) 
44.4% (4/9) 
YPEN (N=9) 
0.0% (0/9) 
11.1% (1/9) 
0.0% (0/9) 
55.6% (5/9) 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
65 
Table 39: Health Boards and Trusts with agreed referral pathways for children and young people with mental health concerns. 
Country/network 
Anxiety 
Depression 
 
Mood 
Disorder 
 
Non-epileptic 
attack disorders 
Other 
None of the above 
England and Wales (N=136) 
54.4% (74/136) 
55.1% (75/136) 
54.4% (74/136) 
37.5% (51/136) 
6.6% (9/136) 
42.6% (58/136) 
England (N=131) 
55.7% (73/131) 
56.5% (74/131) 
55.7% (73/131) 
38.9% (51/131) 
6.1% (8/131) 
41.2% (54/131) 
Wales (N=5) 
20.0% (1/5) 
20.0% (1/5) 
20.0% (1/5) 
0.0% (0/5) 
20.0% (1/5) 
80.0% (4/5) 
 
 
 
 
 
 
 
BRPNF (N=13) 
61.5% (8/13) 
61.5% (8/13) 
61.5% (8/13) 
46.2% (6/13) 
0.0% (0/13) 
38.5% (5/13) 
CEWT (N=5) 
80.0% (4/5) 
80.0% (4/5) 
80.0% (4/5) 
40.0% (2/5) 
20.0% (1/5) 
20.0% (1/5) 
EPEN (N=14) 
42.9% (6/14) 
42.9% (6/14) 
42.9% (6/14) 
35.7% (5/14) 
0.0% (0/14) 
50.0% (7/14) 
EPIC (N=9) 
55.6% (5/9) 
66.7% (6/9) 
66.7% (6/9) 
44.4% (4/9) 
22.2% (2/9) 
33.3% (3/9) 
NTPEN (N=16) 
43.8% (7/16) 
43.8% (7/16) 
43.8% (7/16) 
37.5% (6/16) 
12.5% (2/16) 
50.0% (8/16) 
NWEIG (N=12) 
58.3% (7/12) 
58.3% (7/12) 
58.3% (7/12) 
25.0% (3/12) 
16.7% (2/12) 
33.3% (4/12) 
ORENG (N=7) 
28.6% (2/7) 
28.6% (2/7) 
28.6% (2/7) 
14.3% (1/7) 
0.0% (0/7) 
71.4% (5/7) 
PENNEC (N=8) 
87.5% (7/8) 
87.5% (7/8) 
87.5% (7/8) 
62.5% (5/8) 
12.5% (1/8) 
25.0% (2/8) 
SETPEG (N=8) 
62.5% (5/8) 
62.5% (5/8) 
62.5% (5/8) 
50.0% (4/8) 
0.0% (0/8) 
37.5% (3/8) 
SWEP (N=4) 
0.0% (0/4) 
0.0% (0/4) 
0.0% (0/4) 
0.0% (0/4) 
0.0% (0/4) 
100% (4/4) 
SWIPE (N=9) 
44.4% (4/9) 
44.4% (4/9) 
44.4% (4/9) 
22.2% (2/9) 
0.0% (0/9) 
55.6% (5/9) 
SWTPEG (N=7) 
71.4% (5/7) 
71.4% (5/7) 
71.4% (5/7) 
42.9% (3/7) 
0.0% (0/7) 
28.6% (2/7) 
TEN (N=6) 
66.7% (4/6) 
66.7% (4/6) 
50.0% (3/6) 
33.3% (2/6) 
16.7% (1/6) 
33.3% (2/6) 
WPNN (N=9) 
66.7% (6/9) 
66.7% (6/9) 
66.7% (6/9) 
44.4% (4/9) 
0.0% (0/9) 
33.3% (3/9) 
YPEN (N=9) 
44.4% (4/9) 
44.4% (4/9) 
44.4% (4/9) 
44.4% (4/9) 
0.0% (0/9) 
44.4% (4/9) 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
66 
Table 40: Health Boards and Trusts that were 
facilitating mental health provision within epilepsy 
clinics. 
Country/network 
Yes 
No 
England and Wales 
(N=136) 
14.0% (19/136) 
86.0% 
(117/136) 
England (N=131) 
14.5% (19/131) 
85.5% (112/131) 
Wales (N=5) 
0.0% (0/5) 
100% (5/5) 
 
 
 
BRPNF (N=13) 
0.0% (0/13) 
100% (13/13) 
CEWT (N=5) 
0.0% (0/5) 
100% (5/5) 
EPEN (N=14) 
14.3% (2/14) 
85.7% (12/14) 
EPIC (N=9) 
22.2% (2/9) 
77.8% (7/9) 
NTPEN (N=16) 
25.0% (4/16) 
75.0% (12/16) 
NWEIG (N=12) 
16.7% (2/12) 
83.3% (10/12) 
ORENG (N=7) 
0.0% (0/7) 
100% (7/7) 
PENNEC (N=8) 
0.0% (0/8) 
100% (8/8) 
SETPEG (N=8) 
37.5% (3/8) 
62.5% (5/8) 
SWEP (N=4) 
0.0% (0/4) 
100% (4/4) 
SWIPE (N=9) 
0.0% (0/9) 
100% (9/9) 
SWTPEG (N=7) 
28.6% (2/7) 
71.4% (5/7) 
TEN (N=6) 
16.7% (1/6) 
83.3% (5/6) 
WPNN (N=9) 
22.2% (2/9) 
77.8% (7/9) 
YPEN (N=9) 
11.1% (1/9) 
88.9% (8/9) 
 
 
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=136) 
7.4% (10/136) 
8.8% (12/136) 
8.1% (11/136) 
England (N=131) 
7.6% (10/131) 
9.2% (12/131) 
8.4% (11/131) 
Wales (N=5) 
0.0% (0/5) 
0.0% (0/5) 
0.0% (0/5) 
 
 
 
 
BRPNF (N=13) 
0.0% (0/13) 
0.0% (0/13) 
0.0% (0/13) 
CEWT (N=5) 
0.0% (0/5) 
0.0% (0/5) 
0.0% (0/5) 
EPEN (N=14) 
14.3% (2/14) 
14.3% (2/14) 
7.1% (1/14) 
EPIC (N=9) 
11.1% (1/9) 
11.1% (1/9) 
22.2% (2/9) 
NTPEN (N=16) 
6.3% (1/16) 
12.5% (2/16) 
18.8% (3/16) 
NWEIG (N=12) 
8.3% (1/12) 
16.7% (2/12) 
0.0% (0/12) 
ORENG (N=7) 
0.0% (0/7) 
0.0% (0/7) 
0.0% (0/7) 
PENNEC (N=8) 
0.0% (0/8) 
0.0% (0/8) 
0.0% (0/8) 
SETPEG (N=8) 
37.5% (3/8) 
25.0% (2/8) 
12.5% (1/8) 
SWEP (N=4) 
0.0% (0/4) 
0.0% (0/4) 
0.0% (0/4) 
SWIPE (N=9) 
0.0% (0/9) 
0.0% (0/9) 
0.0% (0/9) 
SWTPEG (N=7) 
14.3% (1/7) 
14.3% (1/7) 
14.3% (1/7) 
TEN (N=6) 
0.0% (0/6) 
0.0% (0/6) 
16.7% (1/6) 
WPNN (N=9) 
11.1% (1/9) 
11.1% (1/9) 
11.1% (1/9) 
YPEN (N=9) 
0.0% (0/9) 
11.1% (1/9) 
11.1% (1/9) 
 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
67 
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=117) 
7.7% (9/117) 
92.3% (108/117) 
England (N=112) 
8.0% (9/112) 
92.0% (103/112) 
Wales (N=5) 
0.0% (0/5) 
100% (5/5) 
 
 
 
BRPNF (N=13) 
7.7% (1/13) 
92.3% (12/13) 
CEWT (N=5) 
40.0% (2/5) 
60.0% (3/5) 
EPEN (N=12) 
0.0% (0/12) 
100% (12/12) 
EPIC (N=7) 
14.3% (1/7) 
85.7% (6/7) 
NTPEN (N=12) 
8.3% (1/12) 
91.7% (11/12) 
NWEIG (N=10) 
0.0% (0/10) 
100% (10/10) 
ORENG (N=7) 
0.0% (0/7) 
100% (7/7) 
PENNEC (N=8) 
12.5% (1/8) 
87.5% (7/8) 
SETPEG (N=5) 
0.0% (0/5) 
100% (5/5) 
SWEP (N=4) 
0.0% (0/4) 
100% (4/4) 
SWIPE (N=9) 
0.0% (0/9) 
100% (9/9) 
SWTPEG (N=5) 
0.0% (0/5) 
100% (5/5) 
TEN (N=5) 
20.0% (1/5) 
80.0% (4/5) 
WPNN (N=7) 
0.0% (0/7) 
100% (7/7) 
YPEN (N=8) 
25.0% (2/8) 
75.0% (6/8) 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
68 
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=136) 
79.4% (108/136) 
92.6% (126/136) 
46.3% (63/136) 
52.2% (71/136) 
86.8% (118/136) 
4.4% (6/136) 
England (N=131) 
80.2% (105/131) 
92.4% (121/131) 
45.8% (60/131) 
54.2% (71/131) 
86.3% (113/131) 
4.6% (6/131) 
Wales (N=5) 
60.0% (3/5) 
100% (5/5) 
60.0% (3/5) 
0.0% (0/5) 
100% (5/5) 
0.0% (0/5) 
 
 
 
 
 
 
 
BRPNF (N=13) 
92.3% (12/13) 
100% (13/13) 
69.2% (9/13) 
46.2% (6/13) 
92.3% (12/13) 
0.0% (0/13) 
CEWT (N=5) 
100% (5/5) 
100% (5/5) 
20.0% (1/5) 
80.0% (4/5) 
100% (5/5) 
0.0% (0/5) 
EPEN (N=14) 
64.3% (9/14) 
85.7% (12/14) 
57.1% (8/14) 
28.6% (4/14) 
85.7% (12/14) 
14.3% (2/14) 
EPIC (N=9) 
66.7% (6/9) 
88.9% (8/9) 
22.2% (2/9) 
55.6% (5/9) 
77.8% (7/9) 
0.0% (0/9) 
NTPEN (N=16) 
87.5% (14/16) 
93.8% (15/16) 
31.3% (5/16) 
68.8% (11/16) 
100% (16/16) 
0.0% (0/16) 
NWEIG (N=12) 
91.7% (11/12) 
91.7% (11/12) 
58.3% (7/12) 
58.3% (7/12) 
83.3% (10/12) 
0.0% (0/12) 
ORENG (N=7) 
85.7% (6/7) 
100% (7/7) 
57.1% (4/7) 
71.4% (5/7) 
85.7% (6/7) 
0.0% (0/7) 
PENNEC (N=8) 
87.5% (7/8) 
100% (8/8) 
87.5% (7/8) 
75.0% (6/8) 
100% (8/8) 
0.0% (0/8) 
SETPEG (N=8) 
100% (8/8) 
100% (8/8) 
62.5% (5/8) 
75.0% (6/8) 
100% (8/8) 
0.0% (0/8) 
SWEP (N=4) 
50.0% (2/4) 
100% (4/4) 
50.0% (2/4) 
0.0% (0/4) 
100% (4/4) 
0.0% (0/4) 
SWIPE (N=9) 
88.9% (8/9) 
100% (9/9) 
55.6% (5/9) 
77.8% (7/9) 
77.8% (7/9) 
0.0% (0/9) 
SWTPEG (N=7) 
42.9% (3/7) 
71.4% (5/7) 
14.3% (1/7) 
28.6% (2/7) 
71.4% (5/7) 
28.6% (2/7) 
TEN (N=6) 
50.0% (3/6) 
66.7% (4/6) 
0.0% (0/6) 
33.3% (2/6) 
66.7% (4/6) 
16.7% (1/6) 
WPNN (N=9) 
66.7% (6/9) 
88.9% (8/9) 
33.3% (3/9) 
22.2% (2/9) 
77.8% (7/9) 
11.1% (1/9) 
YPEN (N=9) 
88.9% (8/9) 
100% (9/9) 
44.4% (4/9) 
44.4% (4/9) 
77.8% (7/9) 
0.0% (0/9) 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
69 
Conditions details are not seen within our Trust or Health Board. 
 
Figure 29:  Percentage of Health Boards and Trusts that had agreed referral criteria for children 
and young people with neuro-developmental problems (n=136).
5.9%
16.2%
49.3%
55.9%
55.1%
80.9%
77.2%
0%
10%
20%
30%
40%
50%
60%
70%
80%
Other
None
Intellectual disability
Developmental cordination disorder
Behaviour difficulties
ASD
ADHD
Percentage of Health Boards and Trusts 
Neurodevelopmental support 
 
16.2% (22/136) of Health Boards and Trusts did not have agreed referral criteria for children and 
young people with neurodevelopmental problems. 77.2% (105/136) had an agreed referral for 
children with ADHD; 80.9% (110/136) for ASD; 55.1% (75/136) for behaviour difficulties; 55.9% 
(76/136) for developmental coordination disorder; 49.3% (67/136) for intellectual disability 
(Table 44/ Figure 29). In the 5.9% (8/136) that selected other, the responses included: 
• 
Developmental delay, 
• 
CP, development delay, neuromuscular, 
• 
Global developmental delay, 
• 
Challenging behaviour associated with severe learning difficulties, 
• 
Early Health Assessment pathway, 
• 
Referral is to community paediatric service who will direct referral to appropriate 
pathway, 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
70 
Table 44: Health Boards and Trusts that had agreed referral criteria for children and young people with neuro-developmental problems  
Country/network 
ADHD 
ASD 
Behaviour 
difficulties 
Developmental 
Coordination 
Disorder 
Intellectual 
disability 
Other 
None 
England and 
Wales (N=136) 
77.2% (105/136) 
80.9% (110/136) 
55.1% (75/136) 
55.9% (76/136) 
49.3% (67/136) 
5.9% (8/136) 
16.2% (22/136) 
England (N=131) 
76.3% (100/131) 
80.2% (105/131) 
55.0% (72/131) 
55.0% (72/131) 
49.6% (65/131) 
6.1% (8/131) 
16.8% (22/131) 
Wales (N=5) 
100% (5/5) 
100% (5/5) 
60.0% (3/5) 
80.0% (4/5) 
40.0% (2/5) 
0.0% (0/5) 
0.0% (0/5) 
 
 
 
 
 
 
 
 
BRPNF (N=13) 
92.3% (12/13) 
100% (13/13) 
84.6% (11/13) 
76.9% (10/13) 
84.6% (11/13) 
0.0% (0/13) 
0.0% (0/13) 
CEWT (N=5) 
100% (5/5) 
100% (5/5) 
80.0% (4/5) 
80.0% (4/5) 
80.0% (4/5) 
20.0% (1/5) 
0.0% (0/5) 
EPEN (N=14) 
57.1% (8/14) 
57.1% (8/14) 
50.0% (7/14) 
50.0% (7/14) 
21.4% (3/14) 
7.1% (1/14) 
28.6% (4/14) 
EPIC (N=9) 
88.9% (8/9) 
88.9% (8/9) 
55.6% (5/9) 
44.4% (4/9) 
44.4% (4/9) 
11.1% (1/9) 
11.1% (1/9) 
NTPEN (N=16) 
62.5% (10/16) 
75.0% (12/16) 
56.3% (9/16) 
37.5% (6/16) 
50.0% (8/16) 
6.3% (1/16) 
25.0% (4/16) 
NWEIG (N=12) 
91.7% (11/12) 
91.7% (11/12) 
58.3% (7/12) 
75.0% (9/12) 
66.7% (8/12) 
0.0%(0/12) 
8.3% (1/12) 
ORENG (N=7) 
71.4% (5/7) 
71.4% (5/7) 
28.6% (2/7) 
42.9% (3/7) 
28.6% (2/7) 
0.0% (0/7) 
28.6% (2/7) 
PENNEC (N=8) 
87.5% (7/8) 
87.5% (7/8) 
62.5% (5/8) 
62.5% (5/8) 
50.0% (4/8) 
0.0% (0/8) 
12.5% (1/8) 
SETPEG (N=8) 
75.0% (6/8) 
87.5% (7/8) 
62.5% (5/8) 
62.5% (5/8) 
62.5% (5/8) 
0.0% (0/8) 
12.5% (1/8) 
SWEP (N=4) 
100% (4/4) 
100% (4/4) 
75.0% (3/4) 
75.0% (3/4) 
50.0% (2/4) 
0.0% (0/4) 
0.0% (0/4) 
SWIPE (N=9) 
77.8% (7/9) 
77.8% (7/9) 
33.3% (3/9) 
44.4% (4/9) 
33.3% (3/9) 
22.2% (2/9) 
11.1% (1/9) 
SWTPEG (N=7) 
71.4% (5/7) 
85.7% (6/7) 
57.1% (4/7) 
42.9% (3/7) 
57.1% (4/7) 
0.0% (0/7) 
14.3% (1/7) 
TEN (N=6) 
66.7% (4/6) 
83.3% (5/6) 
66.7% (4/6) 
83.3% (5/6) 
50.0% (3/6) 
0.0% (0/6) 
16.7% (1/6) 
WPNN (N=9) 
55.6% (5/9) 
44.4% (4/9) 
33.3% (3/9) 
33.3% (3/9) 
33.3% (3/9) 
11.1% (1/9) 
44.4% (4/9) 
YPEN (N=9) 
88.9% (8/9) 
88.9% (8/9) 
33.3% (3/9) 
55.6% (5/9) 
33.3% (3/9) 
11.1% (1/9) 
11.1% (1/9) 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
71 
Care planning 
 
80.1% (109/136) of Health Boards and Trusts reported that they routinely undertook 
comprehensive care planning for children and young people with epilepsy.  
 
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=136) 
80.1% (109/136) 
19.9% (27/136) 
England (N=131) 
80.2% (105/131) 
19.8% (26/131) 
Wales (N=5) 
80.0% (4/5) 
20.0% (1/5) 
 
 
 
BRPNF (N=13) 
76.9% (10/13) 
23.1% (3/13) 
CEWT (N=5) 
80.0% (4/5) 
20.0% (1/5) 
EPEN (N=14) 
85.7% (12/14) 
14.3% (2/14) 
EPIC (N=9) 
88.9% (8/9) 
11.1% (1/9) 
NTPEN (N=16) 
87.5% (14/16) 
12.5% (2/16) 
NWEIG (N=12) 
83.3% (10/12) 
16.7% (2/12) 
ORENG (N=7) 
71.4% (5/7) 
28.6% (2/7) 
PENNEC (N=8) 
62.5% (5/8) 
37.5% (3/8) 
SETPEG (N=8) 
87.5% (7/8) 
12.5% (1/8) 
SWEP (N=4) 
75.0% (3/4) 
25.0% (1/4) 
SWIPE (N=9) 
55.6% (5/9) 
44.4% (4/9) 
SWTPEG (N=7) 
85.7% (6/7) 
14.3% (1/7) 
TEN (N=6) 
83.3% (5/6) 
16.7% (1/6) 
WPNN (N=9) 
77.8% (7/9) 
22.2% (2/9) 
YPEN (N=9) 
88.9% (8/9) 
11.1% (1/9) 
 
 
 
 
 
 
 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
72 
 
 
Patient database or registry 
 
33.8% (46/136) of Health Boards and Trusts reported that they maintain a database or register for 
all children and young people with epilepsies; 39.7% (54/136) reported that they maintain a 
database or register for some children and young people with epilepsies; and 26.5% (36/136) 
Health Boards and Trusts, reported that they do not maintain a database or register, (Table 46).  
 
Table 46: Health Boards and Trusts maintaining a database or register of children and young 
people with epilepsies, other than Epilepsy12. 
 
Country/network 
Yes, all 
Yes, some 
No 
England and Wales 
(N=136) 
33.8% (46/136) 
39.7% (54/136) 
26.5% (36/136) 
England (N=131) 
35.1% (46/131) 
38.9% (51/131) 
26.0% (34/131) 
Wales (N=5) 
0.0% (0/5) 
60.0% (3/5) 
40.0% (2/5) 
 
 
 
 
BRPNF (N=13) 
7.7% (1/13) 
53.8% (7/13) 
38.5% (5/13) 
CEWT (N=5) 
0.0% (0/5) 
40.0% (2/5) 
60.0% (3/5) 
EPEN (N=14) 
42.9% (6/14) 
28.6% (4/14) 
28.6% (4/14) 
EPIC (N=9) 
44.4% (4/9) 
22.2% (2/9) 
33.3% (3/9) 
NTPEN (N=16) 
31.3% (5/16) 
50.0% (8/16) 
18.8% (3/16) 
NWEIG (N=12) 
41.7% (5/12) 
41.7% (5/12) 
16.7% (2/12) 
ORENG (N=7) 
28.6% (2/7) 
42.9% (3/7) 
28.6% (2/7) 
PENNEC (N=8) 
37.5% (3/8) 
37.5% (3/8) 
25.0% (2/8) 
SETPEG (N=8) 
50.0% (4/8) 
12.5% (1/8) 
37.5% (3/8) 
SWEP (N=4) 
0.0% (0/4) 
50.0% (2/4) 
50.0% (2/4) 
SWIPE (N=9) 
33.3% (3/9) 
44.4% (4/9) 
22.2% (2/9) 
SWTPEG (N=7) 
42.9% (3/7) 
42.9% (3/7) 
14.3% (1/7) 
TEN (N=6) 
33.3% (2/6) 
33.3% (2/6) 
33.3% (2/6) 
WPNN (N=9) 
44.4% (4/9) 
44.4% (4/9) 
11.1% (1/9) 
YPEN (N=9) 
44.4% (4/9) 
44.4% (4/9) 
11.1% (1/9) 

Appendix: Epilepsy12 2019 Organisational full audit results 
 
73 
Appendix B: Organisational findings by 
OPEN UK regional networks 
% of Health Boards and Trusts employing a consultant paediatrician with expertise in epilepsy 
 
60.0%
85.7%
87.5%
88.9%
88.9%
92.3%
92.9%
93.4%
100.0%
100.0%
100.0%
100.0%
100.0%
100.0%
100.0%
100.0%
0%
20%
40%
60%
80%
100%
Children's Epilepsy Workstream in Trent
South West Thames Paediatric Epilepsy Group
North Thames Paediatric Epilepsy Network
Mersey and North Wales network 'Epilepsy In
                                     Childhood' interest group
Wessex Paediatric Neurosciences Network
Birmingham Regional Paediatric Neurology
                                                                  Forum
Eastern Paediatric Epilepsy Network
England and Wales combined
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
Trent Epilepsy Network
Yorkshire Paediatric Neurology Network

Appendix: Epilepsy12 2019 Organisational full audit results 
 
74 
% of Health Boards and Trusts that had a defined paediatric epilepsy clinical lead  
 
 
50.0%
75.0%
77.8%
80.0%
84.6%
85.7%
87.5%
88.2%
88.9%
88.9%
92.9%
100.0%
100.0%
100.0%
100.0%
100.0%
0%
20%
40%
60%
80%
100%
South East Thames Paediatric Epilepsy Group
South Wales Epilepsy Forum
Wessex Paediatric Neurosciences Network
Children's Epilepsy Workstream in Trent
Birmingham Regional Paediatric Neurology
                                                                  Forum
South West Thames Paediatric Epilepsy Group
North Thames Paediatric Epilepsy Network
England and Wales combined
South West Interest Group Paediatric Epilepsy
Yorkshire Paediatric Neurology Network
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
Trent Epilepsy Network

Appendix: Epilepsy12 2019 Organisational full audit results 
 
75 
% of Health Boards and Trusts who had some epilepsy specialist nurse (ESN) provision within 
their paediatric service 
61.5%
66.7%
71.4%
71.4%
75.0%
75.0%
75.0%
80.0%
81.3%
81.6%
85.7%
88.9%
91.7%
100.0%
100.0%
100.0%
0%
20%
40%
60%
80%
100%
Birmingham Regional Paediatric Neurology
                                                                  Forum
South West Interest Group Paediatric Epilepsy
Oxford Region Epilepsy Interest Group
South West Thames Paediatric Epilepsy Group
Paediatric Epilepsy Network for the North East
                                                             and Cumbria
South East Thames Paediatric Epilepsy Group
South Wales Epilepsy Forum
Children's Epilepsy Workstream in Trent
North Thames Paediatric Epilepsy Network
England and Wales combined
Eastern Paediatric Epilepsy Network
Wessex Paediatric Neurosciences Network
North West Children and Young People's
                               Epilepsy Interest Group
Mersey and North Wales network 'Epilepsy In
                                     Childhood' interest group
Trent Epilepsy Network
Yorkshire Paediatric Neurology Network

Appendix: Epilepsy12 2019 Organisational full audit results 
 
76 
% of Health Boards Trusts that indicated that they could offer ESN support for rescue 
medication training for parents 
 
 
 
61.5%
66.7%
71.4%
71.4%
75.0%
75.0%
75.0%
77.8%
80.0%
80.1%
81.3%
83.3%
85.7%
100.0%
100.0%
100.0%
0%
20%
40%
60%
80%
100%
Birmingham Regional Paediatric Neurology
                                                                   Forum
South West Interest Group Paediatric Epilepsy
Oxford Region Epilepsy Interest Group
South West Thames Paediatric Epilepsy Group
Paediatric Epilepsy Network for the North East
                                                             and Cumbria
South East Thames Paediatric Epilepsy Group
South Wales Epilepsy Forum
Wessex Paediatric Neurosciences Network
Children's Epilepsy Workstream in Trent
England and Wales combined
North Thames Paediatric Epilepsy Network
North West Children and Young People's
                               Epilepsy Interest Group
Eastern Paediatric Epilepsy Network
Mersey and North Wales network 'Epilepsy In
                                     Childhood' interest group
Trent Epilepsy Network
Yorkshire Paediatric Neurology Network

Appendix: Epilepsy12 2019 Organisational full audit results 
 
77 
% of Health Boards and Trusts that had a defined epilepsy clinic seeing patients at secondary 
level 
 
 
69.2%
77.8%
85.7%
85.7%
87.5%
87.5%
88.9%
88.9%
89.7%
100.0%
100.0%
100.0%
100.0%
100.0%
100.0%
100.0%
0%
20%
40%
60%
80%
100%
Birmingham Regional Paediatric Neurology
                                                                  Forum
South West Interest Group Paediatric Epilepsy
Eastern Paediatric Epilepsy Network
Oxford Region Epilepsy Interest Group
North Thames Paediatric Epilepsy Network
South East Thames Paediatric Epilepsy Group
Wessex Paediatric Neurosciences Network
Yorkshire Paediatric Neurology 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
Paediatric Epilepsy Network for the North East
                                                             and Cumbria
South Wales Epilepsy Forum
South West Thames Paediatric Epilepsy Group
Trent Epilepsy Network

Appendix: Epilepsy12 2019 Organisational full audit results 
 
78 
% of Trusts in England that currently run Epilepsy Best Practice Criteria (BPC) clinics  
 
 
 
30.8%
31.3%
37.5%
37.5%
41.7%
44.4%
46.6%
50.0%
50.0%
55.6%
57.1%
57.1%
60.0%
66.7%
66.7%
0%
20%
40%
60%
80%
Birmingham Regional Paediatric Neurology
                                                                  Forum
North Thames Paediatric Epilepsy Network
Mersey and North Wales network 'Epilepsy In
                                     Childhood' interest group
South East Thames Paediatric Epilepsy Group
North West Children and Young People's
                               Epilepsy Interest Group
South West Interest Group Paediatric Epilepsy
England only
Eastern Paediatric Epilepsy Network
Paediatric Epilepsy Network for the North East
                                                             and Cumbria
Yorkshire Paediatric Neurology Network
Oxford region epilepsy interest group
South West Thames Paediatric Epilepsy Group
Children's Epilepsy Workstream in Trent
Trent Epilepsy Network
Wessex Paediatric Neurosciences Network

Appendix: Epilepsy12 2019 Organisational full audit results 
 
79 
% 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)) 
 
 
 
 
 
 
 
 
 
7.1%
7.7%
11.1%
11.1%
11.1%
11.1%
14.3%
14.3%
16.7%
16.9%
25.0%
25.0%
25.0%
25.0%
33.3%
40.0%
0%
20%
40%
60%
80%
100%
Eastern Paediatric Epilepsy Network
Birmingham Regional Paediatric Neurology
                                                                  Forum
Mersey and North Wales network 'Epilepsy In
                                     Childhood' interest group
South West Interest Group Paediatric Epilepsy
Wessex Paediatric Neurosciences Network
Yorkshire Paediatric Neurology Network
Oxford region epilepsy interest group
South West Thames Paediatric Epilepsy Group
North West Children and Young People's
                                Epilepsy Interest Group
England and Wales Combined
North Thames Paediatric Epilepsy Network
Paediatric Epilepsy Network for the North East
                                                             and Cumbria
South East Thames Paediatric Epilepsy Group
South Wales Epilepsy Forum
Trent Epilepsy Network
Children's Epilepsy Workstream in Trent

Appendix: Epilepsy12 2019 Organisational full audit results 
 
80 
% of Health Boards and Trusts that had agreed referral pathways to tertiary paediatric 
neurology services  
  
75.0%
76.9%
85.7%
87.5%
88.9%
88.9%
88.9%
91.7%
92.6%
100.0%
100.0%
100.0%
100.0%
100.0%
100.0%
100.0%
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
South West Interest Group Paediatric Epilepsy
Wessex Paediatric Neurosciences Network
Yorkshire Paediatric Neurology Network
North West Children and Young People's
                                Epilepsy Interest Group
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
South East Thames Paediatric Epilepsy Group
South West Thames Paediatric Epilepsy Group
Trent Epilepsy Network

Appendix: Epilepsy12 2019 Organisational full audit results 
 
81 
% of Health Boards and Trusts that were able to facilitate Vagal Nerve Stimulation (VNS) review 
at a location within the Health Board or Trust 
 
  
0.0%
6.3%
7.7%
11.1%
11.1%
14.3%
14.3%
21.3%
22.2%
25.0%
25.0%
33.3%
40.0%
44.4%
50.0%
75.0%
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
Wessex Paediatric Neurosciences Network
Eastern Paediatric Epilepsy Network
Oxford region epilepsy interest group
England and Wales Combined
Yorkshire Paediatric Neurology Network
North West Children and Young People's
                               Epilepsy Interest Group
Paediatric Epilepsy Network for the North East
                                                             and Cumbria
Trent Epilepsy Network
Children's Epilepsy Workstream in Trent
South West Interest Group Paediatric Epilepsy
South East Thames Paediatric Epilepsy Group
South Wales Epilepsy Forum

Appendix: Epilepsy12 2019 Organisational full audit results 
 
82 
% of Health Boards and Trusts that could provide specialist advice between scheduled reviews 
every weekday for 52 weeks per year 
 
 
 
14.3%
22.2%
25.0%
25.0%
33.3%
38.5%
42.9%
43.8%
48.5%
55.6%
57.1%
75.0%
75.0%
77.8%
77.8%
80.0%
0%
20%
40%
60%
80%
100%
South West Thames Paediatric Epilepsy Group
South West Interest Group Paediatric Epilepsy
Paediatric Epilepsy Network for the North East
                                                             and Cumbria
South East Thames Paediatric Epilepsy Group
Trent Epilepsy Network
Birmingham Regional Paediatric Neurology
                                                                  Forum
Eastern Paediatric Epilepsy Network
North Thames Paediatric Epilepsy Network
England and Wales Combined
Wessex Paediatric Neurosciences Network
Oxford region epilepsy interest group
North West Children and Young People's
                               Epilepsy Interest Group
South Wales Epilepsy Forum
Mersey and North Wales network 'Epilepsy In
                                     Childhood' interest group
Yorkshire Paediatric Neurology Network
Children's Epilepsy Workstream in Trent

Appendix: Epilepsy12 2019 Organisational full audit results 
 
83 
% of Health Boards and Trusts that have evidence of a clear point of contact for non-paediatric 
professionals seeking paediatric epilepsy support. 
 
 
 
 
 
 
 
 
50.0%
60.0%
61.5%
66.7%
71.4%
71.4%
75.0%
76.5%
77.8%
77.8%
81.3%
83.3%
85.7%
88.9%
91.7%
100.0%
0%
20%
40%
60%
80%
100%
Paediatric Epilepsy Network for the North East
                                                             and Cumbria
Children's Epilepsy Workstream in Trent
Birmingham Regional Paediatric Neurology
                                                                  Forum
Wessex Paediatric Neurosciences Network
Oxford region epilepsy interest group
South West Thames Paediatric Epilepsy Group
South East Thames Paediatric Epilepsy Group
England and Wales Combined
South West Interest Group Paediatric Epilepsy
Yorkshire Paediatric Neurology Network
North Thames Paediatric Epilepsy Network
Trent Epilepsy Network
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 Wales Epilepsy Forum

Appendix: Epilepsy12 2019 Organisational full audit results 
 
84 
% of Health Boards and Trusts that have agreed referral pathway to adult services.  
 
 
  
 
61.5%
62.5%
66.7%
75.0%
75.0%
75.0%
75.0%
77.8%
79.4%
80.0%
83.3%
85.7%
88.9%
92.9%
100.0%
100.0%
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
North West Children and Young People's
                               Epilepsy Interest Group
South East Thames Paediatric Epilepsy Group
South Wales Epilepsy Forum
Wessex Paediatric Neurosciences Network
England and Wales Combined
Children's Epilepsy Workstream in Trent
Trent Epilepsy Network
Oxford region epilepsy interest group
Mersey and North Wales network 'Epilepsy In
                                     Childhood' interest group
Eastern Paediatric Epilepsy Network
South West Thames Paediatric Epilepsy Group
Yorkshire Paediatric Neurology Network

Appendix: Epilepsy12 2019 Organisational full audit results 
 
85 
% of Health Boards and Trusts that have an outpatient clinic specifically for young people with 
epilepsies 
 
 
 
 
 
11.1%
12.5%
16.7%
22.2%
25.0%
28.6%
31.3%
33.3%
36.8%
38.5%
42.9%
50.0%
50.0%
55.6%
57.1%
60.0%
0%
20%
40%
60%
80%
100%
Yorkshire Paediatric Neurology Network
Paediatric Epilepsy Network for the North East
                                                              and Cumbria
Trent Epilepsy Network
Mersey and North Wales network 'Epilepsy In
                                     Childhood' interest group
South Wales Epilepsy Forum
Oxford region epilepsy interest group
North Thames Paediatric Epilepsy Network
South West Interest Group Paediatric Epilepsy
England and Wales Combined
Birmingham Regional Paediatric Neurology
                                                                  Forum
South West Thames Paediatric Epilepsy Group
North West Children and Young People's
                                Epilepsy Interest Group
South East Thames Paediatric Epilepsy Group
Wessex Paediatric Neurosciences Network
Eastern Paediatric Epilepsy Network
Children's Epilepsy Workstream in Trent

Appendix: Epilepsy12 2019 Organisational full audit results 
 
86 
 
% of Health Boards and Trusts that have an outpatient epilepsy service involving adult and 
paediatric professionals  
 
 
 
 
 
12.5%
16.7%
44.4%
50.0%
50.0%
55.6%
55.6%
55.9%
60.0%
61.5%
66.7%
66.7%
68.8%
71.4%
71.4%
75.0%
0%
20%
40%
60%
80%
100%
Paediatric Epilepsy Network for the North East
                                                              and Cumbria
Trent Epilepsy Network
Mersey and North Wales network 'Epilepsy In
                                     Childhood' interest group
Eastern Paediatric Epilepsy Network
South East Thames Paediatric Epilepsy Group
Wessex Paediatric Neurosciences Network
Yorkshire Paediatric Neurology Network
England and Wales Combined
Children's Epilepsy Workstream in Trent
Birmingham Regional Paediatric Neurology
                                                                  Forum
North West Children and Young People's
                                Epilepsy Interest Group
South West Interest Group Paediatric Epilepsy
North Thames Paediatric Epilepsy Network
Oxford region epilepsy interest group
South West Thames Paediatric Epilepsy Group
South Wales Epilepsy Forum

Appendix: Epilepsy12 2019 Organisational full audit results 
 
87 
% of Health Boards and Trusts that have structured resources to support Young People 
transition 
 
 
 
 
 
 
 
 
22.2%
25.0%
37.5%
43.8%
46.2%
57.1%
58.1%
60.0%
62.5%
64.3%
66.7%
66.7%
71.4%
75.0%
77.8%
88.9%
0%
20%
40%
60%
80%
100%
Mersey and North Wales network 'Epilepsy In
                                     Childhood' interest group
South Wales Epilepsy Forum
South East Thames Paediatric Epilepsy Group
North Thames Paediatric Epilepsy Network
Birmingham Regional Paediatric Neurology
                                                                  Forum
Oxford region epilepsy interest group
England and Wales Combined
Children's Epilepsy Workstream in Trent
Paediatric Epilepsy Network for the North East
                                                              and Cumbria
Eastern Paediatric Epilepsy Network
Trent Epilepsy Network
Wessex Paediatric Neurosciences Network
South West Thames Paediatric Epilepsy Group
North West Children and Young People's
                                Epilepsy Interest Group
Yorkshire Paediatric Neurology Network
South West Interest Group Paediatric Epilepsy

Appendix: Epilepsy12 2019 Organisational full audit results 
 
88 
% of Health Boards and Trusts that facilitate mental health provision within epilepsy clinics 
 
 
 
0.0%
0.0%
0.0%
0.0%
0.0%
0.0%
11.1%
14.0%
14.3%
16.7%
16.7%
22.2%
22.2%
25.0%
28.6%
37.5%
0%
20%
40%
60%
80%
100%
Birmingham Regional Paediatric Neurology
                                                                  Forum
Children's Epilepsy Workstream in Trent
Oxford region epilepsy interest group
Paediatric Epilepsy Network for the North East
                                                             and Cumbria
South Wales Epilepsy Forum
South West Interest Group Paediatric Epilepsy
Yorkshire Paediatric Neurology Network
England and Wales Combined
Eastern Paediatric Epilepsy Network
North West Children and Young People's
                               Epilepsy Interest Group
Trent Epilepsy Network
Mersey and North Wales network 'Epilepsy In
                                     Childhood' interest group
Wessex Paediatric Neurosciences Network
North Thames Paediatric Epilepsy Network
South West Thames Paediatric Epilepsy Group
South East Thames Paediatric Epilepsy Group

Appendix: Epilepsy12 2019 Organisational full audit results 
 
89 
% of Health Boards and Trusts that routinely undertook comprehensive care planning for 
children with epilepsy 
 
 
 
 
 
 
 
 
 
55.6%
62.5%
71.4%
75.0%
76.9%
77.8%
80.0%
80.1%
83.3%
83.3%
85.7%
85.7%
87.5%
87.5%
88.9%
88.9%
0%
20%
40%
60%
80%
100%
South West Interest Group Paediatric Epilepsy
Paediatric Epilepsy Network for the North East
                                                             and Cumbria
Oxford region epilepsy interest group
South Wales Epilepsy Forum
Birmingham Regional Paediatric Neurology
                                                                  Forum
Wessex Paediatric Neurosciences Network
Children's Epilepsy Workstream in Trent
England and Wales Combined
North West Children and Young People's
                               Epilepsy Interest Group
Trent Epilepsy Network
Eastern Paediatric Epilepsy Network
South West Thames Paediatric Epilepsy Group
North Thames Paediatric Epilepsy Network
South East Thames Paediatric Epilepsy Group
Mersey and North Wales network 'Epilepsy
                            In Childhood' interest group
Yorkshire Paediatric Neurology Network

Appendix: Epilepsy12 2019 Organisational full audit results 
 
90 
% of Health Boards and Trusts that maintain a database or register for all the children with 
epilepsies 
0.0%
0.0%
7.7%
28.6%
31.3%
33.3%
33.3%
33.8%
37.5%
41.7%
42.9%
42.9%
44.4%
44.4%
44.4%
50.0%
0%
20%
40%
60%
80%
100%
Children's Epilepsy Workstream in Trent
South Wales Epilepsy Forum
Birmingham Regional Paediatric Neurology Forum
Oxford region epilepsy interest group
North Thames Paediatric Epilepsy Network
South West Interest Group Paediatric Epilepsy
Trent Epilepsy Network
England and Wales Combined
Paediatric Epilepsy Network for the North East
                                                             and Cumbria
North West Children and Young People's Epilepsy
                                                                Interest Group
Eastern Paediatric Epilepsy Network
South West Thames Paediatric Epilepsy Group
Mersey and North Wales network 'Epilepsy
                            In Childhood' interest group
Wessex Paediatric Neurosciences Network
Yorkshire Paediatric Neurology Network
South East Thames Paediatric Epilepsy Group

  
91 
Appendix C: List of Organisational data 
figures & tables 
 
Figure 1: Total whole-time equivalent consultant paediatrician with ‘expertise in 
epilepsy’ employed in England and Wales in Round 1, Round 2, Round 3 April 2018 
and Round 3 November 2019. – page 7 
Figure 2: Total Whole Time Equivalent epilepsy specialist nurses employed in 
England and Wales in Round 1, Round 2, Round 3 April 2018 and November 2019. – 
page 10 
Figure 3: Percentage of Health Boards and Trusts that could support epilepsy 
specialist nurse functions (n=136) – page 11 
Figure 4: Percentage of Health Boards and Trusts that could support epilepsy 
specialist nurse functions in in Round 3 April 2018 and November 2019. – page 12 
Figure 5: Total number of consultant or associate specialist led secondary level epilepsy 
clinics in Round 1, Round 2, Round 3 April 2018 and November 2019. – page 18 
Figure 6: Percentage of Trusts receiving TFC 223 Epilepsy Best Practice Criteria (England 
only) (n=131) – page 22 
Figure 7: Percentage of Trusts receiving TFC 223 Epilepsy Best Practice Criteria (England 
only) in Round 3 April 2018 and November 2019. – page 22 
Figure 8: Percentage of Health Boards and Trusts that could provide ketogenetic diet and 
vagal nerve stimulator services (n=136) – page 27 
Figure 9: Percentage of Health Boards and Trusts that could provide ketogenetic diet and 
vagal nerve stimulator services in Round 3 April 2018 and November 2019 – page 28 
Figure 10: Percentage of Health Boards and Trusts that could provide investigation 
services (n=136) – page 31 
Figure 11: Percentage of Health Boards and Trusts that could provide investigation 
services in Round 3 April 2018 and November 2019– page 32 
Figure 12: Availability of specialist advice between scheduled reviews (n=136) – page 38 
Figure 13:  Percentage availability of specialist advice between scheduled reviews in 
Round 3 April 2018 and November 2019 – page 39 
Figure 14: Typical response time for specialist advice (n=130) – page 40 
Figure 15: Typical response time for specialist advice in Round 3 April 2018 and November 
2019 – page 40 
Figure 16: Professional who ‘typically’ provides initial specialist advice (n=130) – page 41 
Figure 17: Professional who ‘typically’ provides initial specialist advice Round 3 April 2018 
and November 2019 – page 41 
Figure 18: Clinics for young people across Rounds 1, Round 2, Round 3 April 2018 and 
November 2019 – page 47 
Figure 19: Composition of joint transition process (n=76) – page 48 
Figure 20: Composition of joint transition process in Round 3 November 2019 and April 
2018. – page 49 
Figure 21: Professionals routinely involved in transition or transfer to adult services 
(n=136) – page 50 

  
92 
Figure 22: Professionals routinely involved in transition or transfer to adult services in 
Round 3 April 2018 and November 2019 – page 50 
Figure 23: Percentage of Health Boards and Trusts that were using structured resources 
to support transition in Round 3 April 2018 and November 2019 – page 51 
Figure 24: Percentage of Health Boards and Trusts routinely providing formal screening 
services (n=136) – page 57 
Figure 25: Percentage of Health Boards and Trusts routinely providing formal screening 
services in Round 3 April 2018 and November 2019 – page 58 
Figure 26: Percentage of Health Boards and Trusts with agreed referral pathways for 
children with mental health concerns (n=136) – page 59 
Figure 27: Percentage of Health Boards and Trusts that could refer to mental health 
services (n=136) – page 60 
Figure 28: Percentage of Health Boards and Trusts that could refer to mental health 
services in Round 3 April 2018 and November 2019 – page 61 
Figure 29:  Percentage of Health Boards and Trusts that had agreed referral criteria for 
children and young people with neuro-developmental problems (n=136) – page 69 
 
Tables for the organisational audit 
Table 1: Epilepsy12 Round 3 2019 Organisational Audit participation by Paediatric Epilepsy 
Networks and by country – page 6 
Table 2: Whole time equivalent (WTE) general paediatric consultants, community or 
hospital based, employed within Health Boards or Trusts – page 8 
Table 3: Whole time equivalent (WTE) general paediatric consultants with 'expertise in 
epilepsy’, excluding paediatric neurologists, employed within Health Boards or Trusts – 
page 8 
Table 4: Health Boards and Trusts that employed at least some level of whole time 
equivalent (WTE) consultant paediatrician with 'expertise in epilepsy’ – page 9 
Table 5: Health Boards and Trusts that had a defined paediatric epilepsy clinical lead – 
page 9 
Table 6: Whole time equivalent (WTE) epilepsy specialist nurses employed within Health 
Boards or Trust – page 13 
Table 7: Health Boards and Trusts that employed at least some level of whole time 
equivalent (WTE) epilepsy specialist nurse – page 13 
Table 8: Health Boards and Trusts that could support epilepsy nurse functions (n=136) – 
page 14 
Table 8 (continued): Health Boards and Trusts that could support epilepsy nurse 
functions (n=136) – page 15 
Table 9: Health Boards and Trusts that could support epilepsy nurse functions (n=111) – 
page 16 
Table 9 (continued): Health Boards and Trusts that could support epilepsy nurse 
functions (n=111) – page 17 

  
93 
Table 10: Health Boards and Trusts that had a defined epilepsy – page 19 
Table 11: Number of consultant or associate specialist led secondary level 'epilepsy 
clinics' taking place within Health Boards and Trusts per week – page 20 
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 21 
Table 13: Trusts that were running TFC 223 Epilepsy Best Practice Criteria (BPC) clinics – 
page 23 
Table 14: Whole time equivalent (WTE) paediatric neurologists, acutely and/or non-
acutely, employed within Health Boards or Trusts – page 24 
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 24 
Table 16: Health Boards and Trusts with agreed referral pathways to tertiary paediatric 
neurology services – page 25 
Table 17a: Health Boards and Trusts that could receive paediatric neurological direct 
referrals from general practice and emergency departments – page 25 
Table 17b: Health Boards and Trusts that could receive paediatric neurological direct 
referrals from general practice and emergency departments (excl. N/A) – page 26 
Table 18: Health Boards and Trusts that were hosting satellite paediatric neurology clinics 
– page 26 
Table 19: Health Boards and Trusts that could facilitate the commencement of a 
ketogenic diet – page 29 
Table 20: Health Boards and Trusts that could undertake ongoing review of a ketogenic 
diet – page 29 
Table 21: Health Boards and Trusts that were able to insert vagal nerve stimulator – page 
30 
Table 22: Health Boards and Trusts that were able to review vagal nerve stimulator – 
page 30 
Table 23: 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 23 (continued): Health Boards and Trusts that could provide epilepsy investigation 
services – page 35 
Table 23 (continued): Health Boards and Trusts that could provide epilepsy investigation 
services – page 36 
Table 23 (continued): Health Boards and Trusts that could provide epilepsy investigation 
services – page 37 
Table 24: Health Boards and Trusts providing specialist advice between scheduled 
reviews – page 42 
Table 25: Availability of Health Boards and Trusts between scheduled reviews – page 43 
Table 26: Typical response time to specialist advice – page 44 
Table 27: Professional who ‘typically’ provides initial specialist advice – page 45 
Table 28: Health Boards and Trusts with evidence of a clear point of contact for non-
paediatric professionals seeking paediatric epilepsy support – page 46 

  
94 
Table 29: Health Boards and Trusts that had an agreed referral pathway to adult services 
– page 52 
Table 30: Health Boards and Trusts that had an outpatient clinic specifically for young 
people with epilepsies – page 53 
Table 31: Age at which the outpatient clinic typically accepted young people with 
epilepsies – page 53 
Table 32: Health Boards and Trusts that had an outpatient service involving adult and 
paediatric professionals – page 54 
Table 33: Structure of outpatient service involving both adult and paediatric 
professionals – page 54 
Table 34: Estimated percentage of young people transferred to adult services through a 
joint professional process – page 55 
Table 35: Health Boards and Trusts that were using structured resources to support 
transition – page 55 
Table 36: Adult professionals routinely involved in transition or transfer to adult services – 
page 56 
Table 37: Health Boards and Trusts that formally screen for diagnoses related to epilepsy 
– page 62 
Table 38: Health Boards and Trusts using particular mental health screening 
questionnaires – page 63 
Table 38 (continued): Health Boards and Trusts using particular mental health screening 
questionnaires – page 64 
Table 39: Health Boards and Trusts with agreed referral pathways for children and young 
people with mental health concerns – page 65 
Table 40: Health Boards and Trusts that were facilitating mental health provision within 
epilepsy clinics – page 66 
Table 41: Composition of mental health provision within epilepsy clinics – page 66 
Table 42: Health Boards and Trusts that had an action plan describing steps towards co-
located mental health provision – page 67 
Table 43: Health Boards and Trusts that could refer to mental health services – page 68 
Table 44: Health Boards and Trusts that had agreed referral criteria for children and 
young people with neuro-developmental problems – page 70 
Table 45: Health Boards and Trusts that routinely undertake comprehensive care 
planning for children and young people with epilepsy – page 71 
Table 46: Health Boards and Trusts maintaining a database or register of children and 
young people with epilepsies, other than Epilepsy12 – page 72 
 
 

  
95 
Appendix D: Participating Health Boards and 
Trusts by OPEN UK region 
 
The following list shows the NHS Health Boards and Trusts across England and Wales 
that submitted data to the Epilepsy12 Round 3 clinical and organisational audit in 2018-19. 
Birmingham Regional Paediatric Neurology Forum  (BRPNF) 
Birmingham Community Healthcare NHS Foundation Trust 
Birmingham Women's and Children's NHS Foundation Trust 
Burton Hospitals NHS Foundation Trust+ 
Coventry and Warwickshire Partnership NHS Trust  
George Eliot Hospital NHS Trust 
Sandwell and West Birmingham Hospitals NHS Trust 
South Warwickshire NHS Foundation Trust 
The Dudley Group NHS Foundation Trust 
The Royal Wolverhampton NHS Trust 
University Hospitals Birmingham NHS Foundation Trust 
University Hospitals Coventry and Warwickshire NHS Trust 
Walsall Healthcare NHS Trust 
Worcestershire Acute Hospitals NHS Trust 
Worcestershire Health and Care NHS Trust 
Wye Valley NHS Trust 
 Children's Epilepsy Workstream in Trent (CEWT) 
Derby Teaching Hospitals NHS Foundation Trust+ 
Leicestershire Partnership NHS Trust 
Nottingham University Hospitals NHS Trust 
Sherwood Forest Hospitals NHS Foundation Trust 
United Lincolnshire Hospitals NHS Trust 
University Hospitals of Leicester NHS Trust 
Eastern Paediatric Epilepsy Network (EPEN) 
Bedford Hospital NHS Trust 
Cambridge University Hospitals NHS Foundation Trust 
Cambridgeshire Community Services NHS Trust 
Colchester Hospital University NHS Foundation Trust+ 
East and North Hertfordshire NHS Trust 
Ipswich Hospital NHS Trust+ 

  
96 
James Paget University Hospitals NHS Foundation Trust 
Luton and Dunstable University Hospital NHS Foundation Trust 
Mid Essex Hospital Services NHS Trust 
Norfolk and Norwich University Hospitals NHS Foundation Trust 
Norfolk Community Health and Care NHS Trust 
North West Anglia NHS Foundation Trust 
The Princess Alexandra Hospital NHS Trust 
The Queen Elizabeth Hospital, King's Lynn, NHS Foundation Trust 
West Suffolk NHS Foundation Trust 
Mersey and North Wales network 'Epilepsy In Childhood' interest group (EPIC) 
Alder Hey Children's NHS Foundation Trust 
Betsi Cadwaladr University LHB 
Countess of Chester Hospital NHS Foundation Trust 
Mid Cheshire Hospitals NHS Foundation Trust 
Shrewsbury and Telford Hospital NHS Trust 
Southport and Ormskirk Hospital NHS Trust 
St Helens and Knowsley Hospitals NHS Trust 
Warrington and Halton Hospitals NHS Foundation Trust 
Wirral University Teaching Hospital NHS Foundation Trust 
North Thames Paediatric Epilepsy Network (NTPEN) 
Barking, Havering and Redbridge University Hospitals NHS Trust 
Barts Health NHS Trust 
Basildon and Thurrock University Hospitals NHS Foundation Trust 
Central and North West London NHS Foundation Trust 
Chelsea and Westminster Hospital NHS Foundation Trust 
Great Ormond Street Hospital For Children NHS Foundation Trust 
Homerton University Hospital NHS Foundation Trust 
Imperial College Healthcare NHS Trust 
London North West Healthcare NHS Trust 
North East London NHS Foundation Trust 
North Middlesex University Hospital NHS Trust 
Royal Free London NHS Foundation Trust 
Southend University Hospital NHS Foundation Trust 
The Hillingdon Hospitals NHS Foundation Trust 
The Whittington Hospital NHS Trust 
University College London Hospitals NHS Foundation Trust 
West Hertfordshire Hospitals NHS Trust 

  
97 
North West Children and Young People's Epilepsy Interest Group (NWEIG) 
Blackpool Teaching Hospitals NHS Foundation Trust 
Bolton NHS Foundation Trust 
East Cheshire NHS Trust 
East Lancashire Hospitals NHS Trust 
Lancashire Teaching Hospitals NHS Foundation Trust 
Manchester University NHS Foundation Trust 
Northern Care Alliance NHS Group 
Salford Royal NHS Foundation Trust+ 
Stockport NHS Foundation Trust 
Tameside and Glossop Integrated Care NHS Foundation Trust 
University Hospitals of Morecambe Bay NHS Foundation Trust 
University Hospitals of North Midlands NHS Trust 
Wrightington, Wigan and Leigh NHS Foundation Trust 
Oxford region epilepsy interest group (ORENG) 
Buckinghamshire Healthcare NHS Trust 
Great Western Hospitals NHS Foundation Trust 
Kettering General Hospital NHS Foundation Trust 
Milton Keynes University Hospital NHS Foundation Trust 
Northampton General Hospital NHS Trust 
Oxford University Hospitals NHS Foundation Trust 
Royal Berkshire NHS Foundation Trust 
Paediatric Epilepsy Network for the North East and Cumbria (PENNEC) 
City Hospitals Sunderland NHS Foundation Trust+ 
County Durham and Darlington NHS Foundation Trust 
Gateshead Health NHS Foundation Trust 
North Cumbria University Hospitals NHS Trust 
North Tees and Hartlepool NHS Foundation Trust 
Northumbria Healthcare NHS Foundation Trust 
South Tees Hospitals NHS Foundation Trust 
South Tyneside NHS Foundation Trust+ 
The Newcastle Upon Tyne Hospitals NHS Foundation Trust 
South East Thames Paediatric Epilepsy Group (SETPEG) 
Brighton and Sussex University Hospitals NHS Trust 
Dartford and Gravesham NHS Trust 
East Kent : QEQM, Margate and WHM, Ashford, Kent 
East Sussex Healthcare NHS Trust 

  
98 
Guy's and St Thomas' NHS Foundation Trust 
King's College Hospital NHS Foundation Trust 
Lewisham and Greenwich NHS Trust 
Maidstone and Tunbridge Wells NHS Trust 
Medway NHS Foundation Trust 
Sussex Community NHS Foundation Trust 
South Wales Epilepsy Forum (SWEP) 
Abertawe Bro Morgannwg University LHB 
Aneurin Bevan LHB 
*Cardiff & Vale University LHB 
Cwm Taf LHB 
Hywel Dda LHB 
South West Interest Group Paediatric Epilepsy (SWIPE) 
Gloucestershire Hospitals NHS Foundation Trust 
Northern Devon Healthcare NHS Trust 
Plymouth Hospitals NHS Trust 
Royal Cornwall Hospitals NHS Trust 
Royal Devon and Exeter NHS Foundation Trust 
Royal United Hospitals Bath NHS Foundation Trust 
Taunton and Somerset NHS Foundation Trust 
Torbay and South Devon NHS Foundation Trust 
University Hospitals Bristol NHS Foundation Trust 
Weston Area Health NHS Trust 
Yeovil District Hospital NHS Foundation Trust 
South West Thames Paediatric Epilepsy Group (SWTPEG) 
Ashford and St Peter's Hospitals NHS Foundation Trust 
Croydon Health Services NHS Trust 
Epsom and St Helier University Hospitals NHS Trust 
Frimley Health NHS Foundation Trust 
Kingston Hospital NHS Foundation Trust 
Royal Surrey County Hospital NHS Foundation Trust 
St George's University Hospitals NHS Foundation Trust 
Surrey and Sussex Healthcare NHS Trust 
Trent Epilepsy Network (TEN) 
Barnsley Hospital NHS Foundation Trust 
Chesterfield Royal Hospital NHS Foundation Trust 
Doncaster and Bassetlaw Teaching Hospitals Foundation Trust 

  
99 
Northern Lincolnshire and Goole NHS Foundation Trust 
Sheffield Children's NHS Foundation Trust 
The Rotherham NHS Foundation Trust 
Wessex Paediatric Neurosciences Network (WPNN) 
Dorset County Hospital NHS Foundation Trust 
Hampshire Hospitals NHS Foundation Trust 
Isle of Wight NHS Trust 
Poole Hospital NHS Foundation Trust 
Portsmouth Hospitals NHS Trust 
Salisbury NHS Foundation Trust 
Solent NHS Trust 
University Hospital Southampton NHS Foundation Trust 
Western Sussex Hospitals NHS Foundation Trust 
Yorkshire Paediatric Neurology Network (YPEN) 
Airedale NHS Foundation Trust 
Bradford Teaching Hospitals NHS Foundation Trust 
Calderdale and Huddersfield NHS Foundation Trust 
Harrogate and District NHS Foundation Trust 
Hull and East Yorkshire Hospitals NHS Trust 
Leeds Community Healthcare NHS Trust 
Leeds Teaching Hospitals NHS Trust 
Mid Yorkshire Hospitals NHS Trust 
York Teaching Hospital NHS Foundation Trust 
 
The following Trusts merged prior to the November 2019 organisational audit. 
Trust mergers 
East Suffolk and North Essex NHS Foundation Trust (formerly Colchester Hospital 
University NHS Foundation Trust & Ipswich Hospital NHS Trust, merged July 2018) 
Northern care Alliance (Merged with Salford Royal NHS Foundation Trust, April 2017) 
University Hospitals of Derby and Burton NHS Foundation Trust (formerly Burton 
Hospitals NHS Foundation Trust & Derby Hospitals NHS Foundation Trust, merged July 
2018) 
South Tyneside and Sunderland NHS Foundation Trust (formerly South Tyneside NHS 
Foundation Trust & City Hospitals Sunderland NHS Foundation Trust, merged April 
2019) 
 

  
100 
Appendix E: 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.   
This left 148 registered Health Boards or Trusts, all of whom provided a submitted a full 
2018 organisational audit submission for Round 3 of Epilepsy12 (including 100% of acute 
Trusts in England).  
The 2019 Organisational audit saw the inclusion of Birmingham Community Healthcare 
NHS Foundation Trust which made 149 registered Health Boards or Trusts. There were 
eight separate Trusts mergers which meant a total of 141 of Health Boards or Trusts.  
The following Health Boards and Trusts were not included within the 2019 
organisational audit results: 
 
Health Board or Trust 
Regional 
Network  
1 
Brighton and Sussex University Hospitals NHS Trust+ 
SETPEG 
2 
Cardiff & Vale University LHB+ 
SWEP 
3 
Coventry and Warwickshire Partnership NHS Trust+ 
BRPNF 
4 
Gloucestershire Hospitals NHS Foundation Trust 
SWIPE 
5 
Leicestershire Partnership NHS Trust 
CEWT 
6 
Maidstone and Tunbridge Wells NHS Trust+ 
SETPEG 
7 
North East London NHS Foundation Trust+ 
NTPEN 
8 
Plymouth Hospitals NHS Trust+ 
SWIPE 
9 
Surrey and Sussex Healthcare NHS Trust+ 
SWTPEG 
+Trusts that were not included within the 2019 Organisational results due to data that was 
either not submitted in time, or not ‘locked’ (a form of verification).  
 

  
101 
Appendix F: Useful resources 
The Royal College of Paediatrics and Child Health 
The Royal College of Paediatrics and Child Health (RCPCH) was founded in 1996. We play 
a major role in postgraduate medical education, professional standards, research and 
policy. The RCPCH has a number of useful resources, including: 
• 
British Paediatric Surveillance Unit www.rcpch.ac.uk/work-we-do/bpsu     
The BPSU is a world leading centre for rare paediatric disease surveillance. It 
enables doctors and researchers to investigate how many children in the UK and 
Republic of Ireland are affected by particular rare diseases, conditions or 
treatments each year. 
• 
Courses and online learning www.rcpch.ac.uk/education/courses 
• 
Continuing professional development  www.rcpch.ac.uk/education/continuing-
professional-development   
• 
Invited reviews www.rcpch.ac.uk/invitedreviews  
We support healthcare organisations, commissioners and clinical teams to resolve 
concerns about paediatric service provision, safety, training, compliance with 
standards, and proposals for paediatric reconfiguration or service design. Our 
service is confidential, established and influential, and tailored to each 
organisation's needs. 
• 
Medicines for Children www.medicinesforchildren.org.uk 
The Medicines for Children website provides parents and carers with information 
they can trust on over 200 medicines commonly prescribed to children. It offers 
free access to patient information leaflets and videos specifically developed to 
advice parents and carers how to give medicine to their child. 
 
• 
MedsIQ  www.qicentral.org.uk/meds-iq  
Medication errors are a significant but preventable cause of harm to children and 
young people.  
 
Research activities  www.rcpch.ac.uk/work-we-do/research-activities  
• 
We aim to improve children’s health outcomes through supporting high quality 
and trusted research. Let's share our expertise, collaborate with others and 
promote the evidence to drive forward improvements in child health. 
 
• 
RCPCH QI Central: www.qicentral.org.uk 
QI Central is a free online resource open to all child health professionals to help 
embed QI projects in clinical practice and continually improve services and 
outcomes for infants, children and young people. As an online repository of peer-
reviewed tools and projects, healthcare professionals are also able to submit their 
own projects and resources to share their experiences with others and propagate 
knowledge in quality improvement. 
• 
Workforce and service design www.rcpch.ac.uk/workforce 
We play a key role in workforce planning to ensure there is an appropriately 
trained paediatric medical workforce to deliver safe and sustainable services for 
children in the UK - in the present and in the future. 
 

  
102 
Epilepsy12 Audit Key Stakeholder 
Organisations 
British Paediatric Neurology Association bpna.org.uk 
The British Paediatric Neurology Association is the professional organisation for doctors 
who specialise in the care of children with neurological disorders. 
Epilepsy Action www.epilepsy.org.uk 
Epilepsy Action is a community of people committed to a better life for everyone 
affected by epilepsy. We want high quality, accessible epilepsy healthcare services, so 
that people with epilepsy have the support they need to manage their condition. We 
want wider awareness and understanding of epilepsy, so that people living with the 
condition are treated with fairness and respect. 
Epilepsy Scotland www.epilepsyscotland.org.uk 
In Scotland 54,000 people live with epilepsy. Children and older people are most at risk 
of developing this common serious neurological condition but anyone can develop 
epilepsy at any time, and 8 people a day in Scotland do. We want to make sure the needs 
of people with epilepsy are met. This is why we campaign for improved healthcare, 
better information provision and an end to stigma.  
Royal College of Nursing www.rcn.org.uk 
The RCN is a membership organisation of more than 435,000 registered nurses, 
midwives, health care assistants and nursing students. We are both a professional body, 
carrying out work on nursing standards, education and practice, and a trade union. 
Epilepsy Specialist Nurses Association (ESNA) www.esna-online.org.uk 
ESNA is a professional organisation whose membership consists of nurses and other 
health professionals working to support people with epilepsy in the fields of adults, 
learning disabilities and paediatrics. ESNA works with its membership to raise the profile 
of epilepsy and to encourage a holistic and co-ordinated approach to care to enable our 
patients to reach the goal of self-management. 
Young Epilepsy www.youngepilepsy.org.uk 
Young Epilepsy is the national charity supporting children and young people aged 25 and 
under with epilepsy and associated conditions, as well as their families. With over 100 
years expertise we provide world class diagnosis, assessment and rehabilitation for 
children and young people with epilepsy. We also undertake research into the condition 
and how it can be treated. 
British Academy of Childhood Disability www.bacdis.org.uk 
Membership is open to all professionals working in the field of childhood disability, 
including paediatrics, psychiatry, specialist nursing, speech and language therapy, 
physiotherapy, occupational therapy, psychology and education.  
British Society for Clinical Neurophysiology www.bscn.org.uk 
The BSCN is a medical charity whose aims, set out in our articles of association, are "to 
promote and encourage for the public benefit the science and practice of clinical 
neurophysiology and related sciences”.