Epilepsy12 2023 Annual Report
Source: data.gov.uk (2023-07-21)

Epilepsy12 2023 National organisational and clinical audits - combined report on 2022 data. This is a combined report of the organisational and clinical audits for Round 3 Cohort 3, published in 2022.

Epilepsy12, the UK collaborative clinical audit of health care for children and young people with suspected epileptic seizures is a national clinical audit delivered by the Royal College of Paediatrics and Child Health. It is commissioned by the Healthcare Quality Improvement Partnership (HQIP) and funded by NHS England and the Welsh Government. In 2022, a further contract was awarded to RCPCH to deliver the audit up to 31 March 2025. 

The results are of the organisation of paediatric epilepsy services for children and young people in England and Wales as described at November 2022, and the standard of clinical care provided by services that focuses on patients in ‘cohort 4’. This is children and young people who had a first paediatric assessment for a ‘paroxysmal episode’ (or episodes) between 1 December 2020 and 30 November 2021.

These data should not be interpreted without referring to the combined reports summary and extended analyses that contain the reports' full results. which is available at: https://www.rcpch.ac.uk/resources/epilepsy12-national-organisational-audit-clinical-audit-2023

Royal College of 
Paediatrics and Child Health
RCPCH
National Clinical Audit of Seizures and 
Epilepsies for Children and Young People
Epilepsy12 2023 combined 
organisational and clinical audits:
Report for England and Wales
Round 4, Cohort 4 (2020-22)
EPILEPSY12

Epilepsy12 Summary Report for 2023 
combined organisational and clinical audits
Round 4, Cohort 4 (2020-22)
Epilepsy12, the National Clinical Audit of 
Seizures and Epilepsies for Children and Young 
People, is commissioned by the Healthcare 
Quality Improvement Partnership (HQIP) as 
part of the National Clinical Audit and Patient 
Outcomes Programme (NCAPOP) and is 
delivered by the Royal College of Paediatrics 
and Child Health (RCPCH). 
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 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. Click here to find out more.
The RCPCH was awarded the contract to deliver Round 4 
of Epilepsy12 from 1 April 2022 to 31 March 2025, having 
also delivered Rounds 1 to 3 between 2009 and 2021.
                                                                                     is a painting by Janet Lee (from Malaysia), an 
international artist and colourist who is living with epilepsy. The artwork is an explosion of 
vibrant colours that declares being “perfectly imperfect” is far from boring. Janet’s artwork 
embodies the spirit of resilience, where she empowers and enlightens others, reminding us 
that beauty and joy can be found in the most unexpected places. Read Janet’s story here.
  Thank you
The Epilepsyl2 Project Board would like 
to thank the administrators, clinical audit 
department staff, data analysts, doctors, 
nurses and others within participating Health 
Boards and Trusts. These teams have put time 
and effort into collecting information and 
entering data for the audit and are working 
to improve paediatric epilepsy services during 
incredibly challenging circumstances.
 
  Epilepsy12 structure
The Epilepsy12 Audit works collaboratively 
with stakeholder organisations and within 
the RCPCH to deliver the audit programme 
accurately and efficiently.
Information on the governance structure of 
Epilepsy12 and the membership of the Project 
Team, Project Board and Methodology and 
Dataset Group are available online here.
Front Cover - Flower Garden
© 2023 Healthcare Quality Improvement Partnership (HQIP)
Contents 
Introduction	
3
Summary Results	
4
Key findings and recommendations	
5
Holistic care 	
5
Equitable care 	
7
Care within education	
9
Limited improvements in care  	
10
Epilepsy12 Youth Advocates 	
12
Epilepsy12: 2023 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 4 (2020-22)
2

Introduction
Epilepsy12 was established in 2009 and has the continuing aim of helping epilepsy services, and 
those who commission health services, to measure and improve the quality of care for children 
and young people with seizures and epilepsies. 
Epilepsy is the most common significant long-term 
neurological condition of childhood and affects an 
estimated 112,000 children and young people in the UK. 
Epilepsy12 seeks to help improve the standard of care for 
children and young people with epilepsies. To do this, 
the audit collects and processes data relating to the 
delivery of patient care and the organisation and 
structure of services. This information is used by the 
audit to highlight areas where services are doing well, 
and also to identify areas in which they need to improve. 
This year’s annual report, including the appendices, glossary and useful resources can be found here. All current 
and previous publications from Epilepsy12 are available here. For more information on Epilepsy12 methodology 
and data collection, please click here.
Auditing of the clinical care 
provided to children and young 
people newly diagnosed with epilepsy 
in ‘cohort 4’ (find out more here), and 
the organisation and structure of 
epilepsy services as at November 
2022 (find out more here).
Quality improvement activities 
and projects related to the audit, 
including the Epilepsy Quality 
Improvement Programme (EQIP), 
a RCPCH Quality Improvement (QI) 
collaborative for paediatric epilepsy 
teams. Find out more here.
The Epilepsy12 Youth Advocate 
programme, RCPCH& Us - a 
group of epilepsy experienced or 
interested children, young people 
and families volunteering to improve 
epilepsy care. Find out more here.
There are three main elements within Epilepsy12 
which are referred to in this report: 
1
2
3
Organisation of Paediatric 
Epilepsy Networks in the United 
Kingdom (OPEN UK) 
OPEN UK is a clinical network connecting NHS Health 
Boards and Trusts that provide care for children with 
epilepsies with regional epilepsy networks and under 
the guidance of the OPEN UK Working Group. The 
group has representation from 17 regional epilepsy 
networks across the UK and the British Paediatric 
Epilepsy Group and aims to unite children’s regional 
and national epilepsy networks to improve integrated 
care for children and young people with epilepsies.
OPEN UK:
•	 encourages collaboration and sharing of regional 
and national ideas, pilots, and resources,
•	 is a national resource and professional UK body 
to which other organisations may come to for 
information, support, data and strategic or clinical 
input,
•	 facilitates links to local, regional and national 
funding bodies.
Click here to find out more
NHS England Children and Young 
People (CYP) Transformation 
Programme Team 
NHS England established an Epilepsy Oversight 
Group in 2021 to help improve epilepsy care 
for children and young people, as part of the 
implementation of the NHS Long Term Plan. The 
Group uses Epilepsy12 data to identify variation 
and areas for improvement, and to benchmark and 
monitor progress at Trust, Integrated Care Board 
(ICB), NHS region and national levels. Four key areas 
of focus have been determined based on analyses of 
successive Epilepsy12 data:
1.	 Addressing variation in care between epilepsy 
services 
2.	 Supporting the mental health of children and 
young people with epilepsy
3.	 Improving referrals into tertiary services and the 
Children’s Epilepsy Surgery Service (CESS)
4.	 Improving the transition from paediatric to adult 
epilepsy services.
Epilepsy12: 2023 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 4 (2020-22)
3

Summary results 
Epilepsy12 performance indicators for clinical data from cohorts 1-4 for England and Wales combined 
This report focuses on Epilepsy12 Round 4, ‘cohort 4’ 
which encompasses children and young people who 
had their first paediatric assessment for a suspected 
seizure between 1 December 2020 and 30 November 
2021. Prior to the January 2023 deadline, 2324 children 
and young people with an epilepsy diagnosis had 
complete first year of care forms submitted, and were 
therefore included in the analyses for this report. 
The Epilepsy12 Project Team processed data relating to 
both the first paediatric assessment and the 12 months 
of subsequent care (the first year of care) delivered to 
all children and young people within the cohort. There 
are 12 ‘Performance Indicator’ (PI) measures for the 
audit which are derived from national guidelines and 
recommendations. Results for these Performance 
Indicator measures across cohorts 1-4 are shown in 
figure 1. 
This report provides evidence of improvements in care 
for children and young people with epilepsy in England 
and Wales for 8 of these 12 performance indicators 
across the past 4 cohorts of the audit, which spanned 
July 2018 to December 2022, including timely access to 
key professionals, investigations, treatments and the 
agreement and content of care plans. 
37%
79%
74%
52%
86%
99%
71%
70%
93%
63%
33%
52%
77%
91%
36%
75%
70%
42%
40%
99%
72%
69%
93%
63%
36%
59%
76%
88%
32%
70%
65%
48%
71%
98%
71%
65%
91%
61%
23%
52%
73%
87%
32%
70%
62%
40%
100%
97%
69%
68%
88%
62%
30%
59%
69%
88%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
       
Round 3, cohort 1
Round 3, cohort 2
Round 3, cohort 3
Round 4, cohort 4
Increase
Change between cohorts 3 and 4
No change
Decrease
12. School Individual Healthcare Plan
11. Comprehensive Care Planning content
10. Comprehensive Care Planning agreement
9b. Sodium Valproate all females
9a. Sodium Valproate females 9 years old and greater
8. Accuracy of diagnosis
7. MRI
6. ECG
5. Seizure Formulation
4. Appropriate ﬁrst paediatric assessment
3b. Epilepsy Surgery referral
3. Tertiary involvement
2. Epilepsy nurse specialist
1. Paediatrician with expertise
Note:  The whiskers on 
the chart represent 95% 
confidence intervals.
Figure 1 – Epilepsy12 Performance indicators for England and Wales combined in Round 3, cohorts 1 -3 and Round 4, cohort 4.
Epilepsy12: 2023 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 4 (2020-22)
4

Key findings & recommendations 
The proportion of children and young people diagnosed with 
epilepsy who received input from a paediatrician with expertise 
(PI.1) within the first year of care increased from 88% (1,730/1,974) 
in cohort 3 to 91% (2,107/2,324) in cohort 4. 
However, only 21% (499/2,324) were seen within 2 weeks of referral, 
as recommended by NICE guidelines, and 13% (308/2,324) waited 
more than 16 weeks from referral to be seen by a paediatrician 
with expertise in epilepsy.
77% (1,793/2,324) of children and young people diagnosed with 
epilepsy received input from an Epilepsy Specialist Nurse (PI.2) 
within the first year of care. This remains static from cohort 3, 
76% (1,505/1,974). 
More and more children and young people with epilepsy 
are receiving input from epilepsy specialist nurses and 
paediatricians with expertise. However, there remain some 
children without such access, and rates of wider involvement 
from other key health professionals remain low.
Key message 1: Holistic care
 
Multidisciplinary Team 
More children and young people with epilepsy are receiving input from key health professionals 
in their first year of care following first paediatric assessment, compared to previous years.
KEY FINDING
KEY FINDING
 
LEAD
Paediatrician with expertise
91% (2,107/2,324) of children and young people 
diagnosed with epilepsy had input from a 
paediatrician with expertise.
91%
PI.1
•	
 66% (85/128) of Health Boards and Trusts had both an adult and paediatric ESN routinely involved 
in the transition of young people with epilepsy to Adult Services, and 66% (85/128) used structured 
resources during the transition process. 
•	 Only 7% (9/128) of Health Boards and Trusts were able to provide specialist advice to children and 
young people with epilepsy on all weekdays and out of hours for 52 weeks of the year. 
 
Epilepsy
Specialist
Nurse
Epilepsy Specialist Nurses
77% (1,793/2,324) of children and young 
people diagnosed with epilepsy had input 
from an Epilepsy Specialist Nurse.
77%
PI.2
Epilepsy12: 2023 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 4 (2020-22)
5

KEY FINDING
Mental Health 
Research suggests there is a high incidence of mental health conditions 
among children and young people with long term conditions1.
5% (119/2,324) of children and young people in cohort 4 had an 
identified mental health condition, similar to 4% in cohort 3. Mood 
disorder was indicated for 2% and anxiety disorder directly for <1%, 
although ‘anxiety’ was frequently listed under the ‘other category’.
These results for cohort 4 suggest that some children 
and young people with epilepsy may be missing out 
on, or having a delayed identification of, mental health 
conditions and that ‘anxiety’ in particular may be being 
under reported as a distinct mental health condition. 
In 2022, only 20% (25/128) of Health Boards and Trusts 
had formal screening for mental health disorders 
and 26% (33/128) had formal screening for Attention 
Deficit Hyperactivity Disorder (ADHD), Autistic 
Spectrum Disorder (ASD) and mental health conditions. 
64% (82/128) 
of Health Boards 
and Trusts had agreed 
referral pathways for children 
and young people with anxiety; 65% (83/128) for 
depression; and 63% (81/128) for mood disorder. Only 
9% (12/128) of epilepsy services provided co-located 
mental health provision, as recommended within 
the NHS England Paediatric Epilepsy best practice 
tariff (BPT), and 40% (51/128) were using established 
questionnaires for mental health screening. 
	 Recommendation 1 
All children and young people with epilepsy should be 
supported holistically from a network of professionals 
and services. A multi-agency directory outlining epilepsy 
provision and pathways should be maintained to signpost 
the public and professionals to locally available services. 
This should include health, social care, the voluntary 
sector and education professionals and services.
Action by: Integrated Care Boards (ICBs) in England and 
Regional Partnership Boards in Wales, in collaboration 
with OPEN UK regional networks.
	 Quality improvement at University College 
London Hospitals NHS Foundation Trust 
The clinical team at the Trust has aimed to increase the 
psychological support available in their service to young 
people with epilepsy through innovative engagement 
and delivery of care. They recruited a 0.2 Whole-Time 
Equivalent (WTE) Clinical Psychologist who became 
an expert in the needs and common psychological 
difficulties experienced by young people with epilepsy. 
This psychological provision included inclusion of 
a psychologist at MDT meetings, monthly slots for 
psychological assessments dedicated to young people 
with epilepsy, and two new psychology-based groups:
Tree of Life – a narrative therapy-based project helping 
young people build confidence and strengthen alternative 
stories of their life that do not foreground around epilepsy. 
The forum encourages discussion on the challenges 
of being a young person with epilepsy and a collective 
exploration of responses to those challenges.
Study skills for epilepsy – a workshop addressing, 
normalising, and providing support for common 
cognitive difficulties experienced by young people with 
epilepsy. A pamphlet was created with the workshop 
information to be made available for all young people 
with epilepsy at UCLH. 
The outcomes so far have been:
•	 quicker access to a psychologist following referral,
•	 access to a psychologist with epilepsy specific expertise,
•	 positive feedback from the team and patients.
1. Buelow JM, et al. (2003) Behaviour and mental health problems in children with epilepsy and low IQ. Dev Med Child Neuro
20%
S.D.Q
SCREENING
Paediatric
Neurologist
Mental health screening
20% (25/128) of Health Boards and 
Trusts have formal screening for 
mental health disorders.
Epilepsy12: 2023 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 4 (2020-22)
6

70% (996/1,431) of children and young people with epilepsy and 
convulsive seizures obtained a 12 lead ECG (PI.6) within their 
first year of care. This indicator ranged from 13% to 100% at a 
Health Board and Trust level.
There is wide variation in care between OPEN UK regions 
and Health Boards/Trusts. There are significant differences 
in deprivation rates between regions. There is limited data 
on other population attributes and their associations with 
service configuration and quality of care.
Key message 2: Equitable care
Investigations 
More children and young people with epilepsy within cohort 4 received 
timely access to key investigations to diagnose and monitor their 
epilepsy compared to earlier Epilepsy12 cohorts, however this 
access varied between Health Boards and Trusts.
 
 
ECG
70% (996/1,431) of children and young 
people with convulsive seizures and 
epilepsy obtained a 12 lead ECG 
within the ﬁrst year of care. 
70%
PI.6
•	
Only 52% (1,209/2,324) of children and young people diagnosed with 
epilepsy obtained their EEG within four weeks of request. 
Treatment 
All females of child-bearing potential and prescribed Sodium Valproate should receive information on the 
possible foetal risks and should have ongoing documentation regarding their status within the Valproate 
Pregnancy Prevention Programme.
•	 86% of all females aged over 9 years currently on sodium valproate treatment had evidence of discussions 
of foetal risk (PI.9a), and this has increased from 41% in cohort 3. For females of all ages currently on 
valproate treatment, 52% (55/106) had evidence of discussions of foetal risk (PI.9b).
•	 Additionally, there were low levels of rescue medication use, where 23% (533/2,324) of children and young 
people diagnosed with epilepsy had rescue medication prescribed.
KEY FINDING
Care planning
There is widespread use of care planning, where most children and young people with epilepsy had evidence 
of an agreed and updated comprehensive care plan, and there has also been improvement over time.
•	 74% (1,727/2,324) of children and young people diagnosed with epilepsy had evidence of a comprehensive care 
plan (PI.10) that had been agreed between the child or young person, their family and/or carers and primary 
and secondary care health providers, and had been updated where necessary during the first year of care.
Epilepsy12: 2023 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 4 (2020-22)
7

KEY FINDING
Deprivation
In cohort 4, there were a higher proportion of children and young people diagnosed with epilepsy living in the 
most deprived quintile, compared to other quintiles. In England and Wales, 28% (654/2,306) of children and 
young people with epilepsy were living in the most deprived quintile. Figure 2 displays that, at an OPEN UK 
level, this proportion ranged from 4% to 58% across paediatric epilepsy networks.
Figure 2 – Percentage of children and young people diagnosed with epilepsy in cohort 4 by deprivation quintile and country/network. 
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
YPEN
WPNN
TEN
SWTPEG
SWIPE
SWEP
SETPEG
PENNEC
ORENG
NWEIG
NTPEN
EPIC
EPEN
CEWT
BRPNF
WAL
ENG
ENG&WAL
% of children and young people diangosed with epilepsy
Country/Network
Most deprived
Third least deprived
Second least deprived
Second most deprived
Least deprived
38%
6%
39%
4%
11%
31%
16%
42%
14%
58%
19%
41%
10%
29%
50%
26%
28%
28%
19%
17%
16%
18%
27%
26%
22%
24%
21%
17%
37%
17%
18%
19%
20%
22%
22%
22%
16%
35%
15%
18%
25%
13%
25%
14%
17%
8%
24%
16%
29%
18%
15%
19%
19%
19%
14%
21%
18%
25%
25%
13%
18%
12%
23%
8%
12%
16%
20%
19%
8%
17%
16%
16%
13%
21%
13%
34%
12%
18%
20%
8%
26%
9%
8%
10%
23%
14%
7%
17%
15%
15%
This graph excludes 
18 CYP with invalid 
postcodes. Deprivation 
quintiles were derived 
by matching home 
postcodes to the English 
(IMD, 2019) and Welsh 
(WIMD, 2019) indices of 
multiple deprivation data.
Find the list of OPEN 
UK networks here.
79% (1,844/2,324) of children and young people diagnosed 
with epilepsy had documented evidence of communication 
regarding the core elements of comprehensive care 
planning (PI.11) within the first year of care.
Although only 56% (1,313/2,324) had evidence of receiving 
information on Sudden Unexpected Death in Epilepsy 
(SUDEP), and access to SUDEP information varied between 
regions, ranging from 32% to 90% at OPEN UK region levels. 
KEY FINDING
 
HEALTHCARE 
PLAN
Care planning key contents
79% (1,844/2,324) of children and young 
people diagnosed with epilepsy, had 
evidence of an updated and agreed 
comprehensive care plan.
79%
PI.11
Epilepsy12: 2023 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 4 (2020-22)
8

KEY FINDING
Neurodisability and neurodevelopmental problems
Research suggests that school-aged children and young people with epilepsy commonly experience difficulties in 
academic achievement, which could be attributed to lowered global cognition2. 
•	 In cohort 4, 6% (149/2,324) of children and young people diagnosed with epilepsy had an identified intellectual 
disability/global development delay/learning disability. The severity of the disability/delay was severe/profound 
in 29% (43/149) of these children and young people. Autistic spectrum disorder, speech disorder and ‘other 
learning difficulties’ were indicated for 8%, 1% and 3% respectively. 
The cohort 4 results suggest that some children and young people with epilepsy may be missing out on, or having 
a delayed identification of, neurodisability and neurodevelopmental problems.
2. Reilly C, et al. (2014) Academic achievement in school-aged children with active epilepsy: a population-based study. Epilepsia.
	 Recommendation 2 
All children and young people with epilepsy should have 
appropriate access to care, including professionals, services, 
investigations and treatments. This should be irrespective 
of age, sex, ethnicity, social deprivation status, learning 
disability, autism or geography. Integrated Care Boards, 
regional teams and associated health systems should use 
Epilepsy12 data, alongside other trusted data sources, to 
ensure equitable delivery of care and outcomes.
Action by: Integrated Care Boards across England 
in line with the aims for epilepsy care set out within 
Core20PLUS5 – the NHS England approach to reducing 
health inequalities for children and young people. 
Regional Partnership Boards across NHS Wales and 
Public Health Wales.
	 Recommendation 3
Health services should explore with education services 
ways to improve the number of children having effective 
ongoing School Individual Health Care Plans (IHP) 
and Education Health Care Plans (EHCP). The use of 
established templates and contents, for example those 
created by Young Epilepsy, Epilepsy Action and the 
Epilepsy12 Youth Advocates is recommended. 
Action by: Integrated Care Boards (ICBs) in England and 
Regional Partnership Boards in Wales, in collaboration 
with OPEN UK regional networks.
School Individual Healthcare Plan 
It is important that children and young people receive care and support 
for their epilepsy within education settings. This can be facilitated by 
appropriate, up-to-date health care planning within education and two-way 
information sharing between those working in healthcare and education.
Few children and young people had evidence of a School Individual 
Healthcare Plan (IHP) (PI.12) in England and Wales, 37% (577/1,562). 
The documented use of school IHPs has increased little since cohort 1 
(5% increase) and there is large variation between Health Boards and 
Trusts, with 28/128 services having 0% performance on this indicator.
 
 
School Individual 
Health Care Plan
37% (577/1,562) of children and young people 
diagnosed with epilepsy and aged 5 years and 
above had evidence of a school individual 
healthcare plan by their ﬁrst 
year of care.
37%
PI.12
SCHOOL
INDIVIDUAL
HEALTHCARE PLAN
 
There continues to be few children and young people with epilepsy 
who have evidence of a School Individual Health Care Plan.
Key message 3: Care within education
Epilepsy12: 2023 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 4 (2020-22)
9

63% (1,475/2,324) of all children and young people in cohort 4 had 
appropriate first paediatric clinical assessments (PI.4). Most 
children and young people had evidence of assessment for key 
components, including description of episodes (99%), timing (95%), 
general examination (93%) and neurological examination (91%).
However, some sub-categories within this indicator were 
performing lower than others. For example, only 81% of children 
and young people had documentation of the descriptions of age of 
child / timing of the first episode, and 86% had documentation of 
the description of developmental, learning or schooling progress.
KEY FINDING
KEY FINDING
Whilst there is evidence of significant improvements in 
some aspects of epilepsy care, there are some areas of 
care that are showing no improvement over time.
Key message 4: 
Limited improvements in care
Performance Indicator 3 - Tertiary input 
When indicated, input from specialised tertiary services can be crucial to epilepsy care and treatment. There 
is evidence that some children and young people with epilepsy may be missing out on, or having delayed 
referral to, these specialised services. Tertiary input has shown no improvement 
over time and access varies between Health Boards and Trusts.
Performance Indicator 4 - Appropriate first paediatric assessment 
‘Appropriate first paediatric assessment’ was defined as a clinical assessment for paroxysmal episode(s) consisting 
of all the components deemed as necessary by Epilepsy12, with reference to NICE/SIGN guidelines. The proportion 
of children and young people receiving appropriate first paediatric assessments has remained static over time.
Certain areas of epilepsy care, such as access to paediatricians with expertise in epilepsy and epilepsy specialist 
nurses, have improved from cohort 1. However, there is evidence that some areas of epilepsy care are showing no 
improvement over time. Figure 3 displays the results for 5 performance indicators which have remained static in 
England and Wales across Round 3, cohorts 1 – 3 and Round 4, cohort 4.
In England and Wales, 52% (249/480) of children meeting the 
defined criteria for paediatric neurology referral received 
input from tertiary care (PI.3a) and/or Children’s Epilepsy 
Surgery Service (CESS) referral within the first year of care. 
This proportion was 59%, 52% and 59% in cohorts 1, 2 and 3 
respectively. 
Only 33% (39/118) of children and young people diagnosed 
with epilepsy and meeting CESS referral criteria had an 
epilepsy surgery referral (PI.3b). 
 
Tertiary Input
 
Tertiary 
care
CESS 
referral
59%
Cohort 1
Cohort 4
52%
PI.3a
 
Appropriate ﬁrst 
paediatric assessment
62%
Cohort 1
63%
Cohort 4
PI.4
Epilepsy12: 2023 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 4 (2020-22)
10

 
Tertiary involvement
Epilepsy surgery referral 
Approrpiate ﬁrst paediatric assessment 
MRI
School individual healthcare plan 
0%
20%
40%
60%
80%
100%
Cohort 1 (2017 – 19)  
Cohort 2 (2018 – 20)
Cohort 3 (2019 – 21)
Cohort 4 (2020 – 22)
Performance Indicator 7 - MRI brain scan
In cohort 4, 71% (499/707) of children and young people diagnosed with epilepsy, and with defined indications for 
an MRI Brain Scan (PI.7), had an MRI brain scan by their first year of care in England and Wales. The proportion of 
children and young people receiving an MRI was 69%, 71% and 72% in cohorts 1, 2 and 3 respectively.
	 Recommendation 4 
Coordinated reviews should be carried out to 
identify barriers, establish enablers and implement 
improvement plans for those areas of paediatric 
epilepsy care where Epilepsy12 highlights little or no 
improvement over time. 
Action by: Regions and Integrated Care Boards (ICBs) 
in England and Regional Partnership Boards in Wales.
	 Epilepsy Quality Improvement 
Programme (EQIP) 
RCPCH EQIP is a tailored programme supporting teams 
to work together to define shared aims and develop 
practical interventions which incorporate QI methods 
and match their capacity and resource. A third wave of 
training is underway for 12 paediatric epilepsy service 
teams (7 Health Boards/Trusts and 1 Integrated Care 
Board (ICB) made up of 5 Trusts) focusing on planning 
and implementing their project interventions within key 
national priority areas in mental health screening and 
wellbeing, transition and reducing waiting times. Find 
out more information on the EQIP here.
	 Quality Improvement (QI) 
case studies 
NHS Health Boards and Trusts in England and Wales 
have been undertaking additional QI projects, where 
clinical teams have used innovative approaches to 
design, implement and evaluate interventions, processes 
and pathways to optimise the care provided to children 
and young people with epilepsy. Projects focused on 
psychological provision, checklists for educational 
support, transition, SUDEP information and much more! 
You can find the detailed case studies on our website.
Figure 3 – Performance indicators in England and Wales across Round 3, cohorts 1-3, and Round 4 cohort 4 (2017 to 2022). 
KEY FINDING
Epilepsy12: 2023 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 4 (2020-22)
11

Future areas of focus
We are Epilepsy12 Youth Advocates and we volunteer 
across the year to help improve epilepsy care across 
England and Wales. Read more about us here.
Epilepsy12 Youth Advocates
Created a new young person and parent/carer 
leaflet, with a checklist so you know what to ask 
or talk about and to show the good things that 
are happening. 
Presented at the RCPCH Annual Conference and 
the Epilepsy12 & OPEN UK Conference in 2022. 
We wanted to make a difference following on 
from the audit figures about School Individual 
Healthcare Plans. We looked at 7 different 
templates, talked about what was important to 
us and created a leaflet to help everyone involved 
and made sure it is relevant, personal and useful.
We won our 3rd national HQIP award 
in November 2022 for patient and public 
involvement! We’re so proud of that!
Published a podcast all about being diagnosed 
with epilepsy with Medicines for Children.
Agreed new priorities for 2023 onwards, where 
we’ll be looking at mental health support for 
parents and families, independence and life 
skills for children and young people, raising 
awareness of the Epilepsy12 Youth Advocates 
and doing clinic chats to hear more from people 
living with epilepsy. 
2022/23 Activities
The Epilepsy12 Youth Advocates champion ways to improve care for children and young people with epilepsy. 
This year we have:
  Did you know?
•	
We meet in person and online and most of 
that we are laughing and having fun.
•	
We always have a mental health check in at the 
start of our meetings and a check out at the end.
•	
Sometimes we play music really loud in the Collage 
(and forget it’s a weekday meeting so everyone 
hears in the building?!).
•	 Increasing the numbers of school care plans 
and whole school awareness/teacher training.
•	 Increasing access to youth workers and youth 
mental health workers in the first year of care.
•	 Improving out of hours contact about worries/
anxieties about your epilepsy.
•	 Increase the number of young people’s/young 
adult clinics.
•	 Improve mental health screening to support 
with worries and anxieties.
The E12 Youth 
Advocates, basically ROCK!!
We worked so well together with a 
common goal, which is to get how important 
epilepsy care is for all young people and 
we will keep fighting on!! To find out 
more get in touch with us here.
P
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Epilepsy12: 2023 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 4 (2020-22)
12

Royal College of Paediatrics 
and Child Health
5-11 Theobalds Road, 
London, WC1X 8SH
The Royal College of Paediatrics and Child Health (RCPCH) is a registered charity in England and Wales (1057744) 
and in Scotland (SC038299).
Healthcare Quality 
Improvement Partnership (HQIP) 
Dawson House, 5 Jewry Street,
London EC3N 2EX
Royal College of 
Paediatrics and Child Health
RCPCH
Published by the RCPCH
Version 1.0: 13 July 2023
National Clinical Audit of Seizures and 
Epilepsies for Children and Young People
EPILEPSY12