Epilepsy12 2024 Annual Report
Source: data.gov.uk (2024-11-06)

Epilepsy12 2024 National organisational and clinical audits - combined report on 2023 data. This is a combined report of the organisational and clinical audits for Round 4 Cohort 5, published in 2024.

Epilepsy12, the UK collaborative clinical audit of health care for children and young people with suspected epileptic seizures is a national clinical audit delivered by the Royal College of Paediatrics and Child Health. It is commissioned by the Healthcare Quality Improvement Partnership (HQIP) and funded by NHS England and the Welsh Government. In 2022, a further contract was awarded to RCPCH to deliver the audit up to 31 March 2025.

The results are of the organisation of paediatric epilepsy services for children and young people in England and Wales as described at November 2023, and the standard of clinical care provided by services that focuses on patients in ‘cohort 5’. This is children and young people who had a first paediatric assessment for a ‘paroxysmal episode’ (or episodes) between 1 December 2021 and 30 November 2022.

This data should not be interpreted without referring to the combined reports summary and extended analyses that contain the reports' full results. which is available at: https://www.rcpch.ac.uk/resources/epilepsy12-national-organisational-audit-clinical-audit-2024

Royal College of 
Paediatrics and Child Health
RCPCH
National Clinical Audit of Seizures and 
Epilepsies for Children and Young People
Epilepsy12 2024 combined  
organisational and clinical audits:
Report for England and Wales
Cohort 5 – The first year of care for children and young people after a first 
paediatric assessment between 1 December 2021 and 30 November 2022
EPILEPSY12

Epilepsy12 Summary Report for 2024 
combined organisational and clinical audits
Cohort 5 – The first year of care for children and young people after a first 
paediatric assessment between 1 December 2021 and 30 November 2022
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, and the Royal College of Nursing. 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. Find out 
more at www.hqip.org.uk/national-programmes
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.
                                         ‘White Butterflies’ is a neurographic artwork by Jeremy Ryan Smith,  
a mixed-media artist from Illinois, USA, living with epilepsy. Neurographic art allows 
artists to process complex emotions in a meditative and mindful way. ‘White Butterflies’ 
was created as part of his Art Therapy collection.  
  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 
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 – 
© 2024 Healthcare Quality Improvement Partnership (HQIP)
Contents 
Introduction	
3
Results at a glance	
4
Key findings and recommendations	
5
Contributing & Participating 	
5
Widening and strengthening 	
6 
epilepsy team provision
Ensuring timeliness of input	
8
Tackling variations in care  	
10
Epilepsy12 Youth Advocates 	
12
Epilepsy12: 2024 Combined organisational and clinical audits: Report for England and Wales, Cohort 5
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 of services. 
This information is used by the audit to highlight areas 
where services are doing well, and to identify areas for 
improvement.  
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 5’ (find out more here), and 
the organisation and structure of 
epilepsy services as of November 
2023 (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 British Paediatric 
Epilepsy Group. It 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. In October 2023, a National bundle of 
care for CYP with epilepsy was published, consisting 
of key standards and recommendations to support 
systems with epilepsy quality improvement. The Epilepsy 
Oversight Group uses Epilepsy12 data to identify variation 
and areas for improvement, and to benchmark and 
monitor progress at Trust, Integrated Care Board (ICB), 
NHSE region and national levels.
The bundle of care describes four key areas of focus, 
informed by analyses of successive Epilepsy12 data: 
1.	 Addressing variation in care between epilepsy 
services 
2.	 Supporting the mental health and wellbeing 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: 2024 Combined organisational and clinical audits: Report for England and Wales, Cohort 5
3

Results are from Epilepsy12 Round 4, ‘cohort 5’ which encompasses children and young people who had 
their first paediatric assessment for a suspected seizure between 1 December 2021 and 30 November 2022. 
Prior to the January 2024 deadline, 2212 children and young people with an epilepsy diagnosis had completed first year of care 
forms submitted and were therefore included in the analysis for this report. 
We process data relating to the first 12 months of care for all children and young people within the cohort. There are 10 ‘Key 
Performance Indicator’ (KPI) measures for the audit which are derived from national guidelines and quality standards. 
We have begun to collate results since 2018 to capture longitudinal trends. This is showing improvement in some aspects of care 
and other areas where progress appears limited. For further information see our new Epilepsy12 Longitudinal Trends Report.
Audits 
RCPCH
Involvement of appropriate professionals
KPI 1 Paediatrician with expertise in 
epilepsies
50.8% (1123/2212) of children and young  
people with epilepsy received input by a 
‘consultant Paediatrician with expertise in 
epilepsies’ within two weeks of initial referral. 
KPI 2 Epilepsy Specialist Nurse
80.7% (1786/2212) of children and young 
people with epilepsy received input by an 
Epilepsy Specialist Nurse within the first year 
of care.
KPI 3b Epilepsy surgery referral
37.3% (41/110) of children and young people with epilepsy who 
met CESS referral criteria had evidence of a CESS referral.
KPI 3a Tertiary input
49.2% (291/592) of children and young 
people with epilepsy meeting defined criteria 
for tertiary input received input from a  
paediatric neurologist or a referral to  
Children’s Epilepsy Surgery Service (CESS) 
within the first year of care.
49%
49.2%
 
 
CESS
referra
l
LEAD
50.8%
49%
Epilepsy
Specialist
Nurse
80.7%
Appropriate assessment
KPI 4 ECG
72.1% (1036/1436) of children and young 
people with epilepsy and convulsive seizures 
had an ECG within the first year of care.
49%
72.1%
49%
53.1%
KPI 5 MRI
53.1% (385/725) of children and young  
people with epilepsy and defined  
indications for an MRI had an MRI brain  
scan within 6 weeks of request.
Mental health
Care Planning
KPI 7 Mental health support
61.5% (83/135) of children and young  
people with epilepsy and a mental 
health problem had evidence of 
receiving mental health support.
49%
61.5%
KPI 8 Sodium Valproate
100% (3/3) of female young people with 
epilepsy who are 12 years and over and 
currently on valproate treatment had a  
risk acknowledgement form completed. 
100%
KPI 9a Care planning agreement
80.8% (1787/2212) of children and 
young people with epilepsy had evidence 
of care planning agreement.
KPI 9b Care planning content
64.8% (1433/2212) of children and young people with 
epilepsy had documented evidence of communication 
regarding core elements of care planning.
49%
80.8%
KPI 10 School Individual Health Care Plan
38.9% (573/1472) of children and young people 
with epilepsy aged 5 years and above had 
evidence of a School Individual Health Care  
Plan within the first year of care.
49%
38.9%
KPI 6 Assessment of mental health 
issues
22.4% (330/1472) of children and young 
people with epilepsy had documented 
evidence that they had been asked about 
mental health.
49%
22.4%
Results at a glance
EPILEPSY12
HEALTHCARE 
PLAN
Tertiary
care
4
Epilepsy12: 2024 Combined organisational and clinical audits: Report for England and Wales, Cohort 5

	 Recommendation 1 
Support Epilepsy teams not yet participating in the 
audit to value, contribute and improve together 
through Epilepsy12 participation. This might be 
through promotion of the audit, training, workforce 
and team development, job planning or identifying 
and solving specific local barriers. ICBs should identify 
supporting routes and engage with quality improvement 
programmes, such as the Epilepsy Quality Improvement 
Programme (EQIP), managed by the RCPCH, to assess 
quality of care and provision within those services not yet 
participating.
Action by: Integrated Care Boards (ICBs) in England and 
local Health Boards in Wales, in collaboration with OPEN 
UK regional networks.
Key findings & recommendations 
Key message 1: Contributing and participating
Epilepsy12, as the only national programme investigating paediatric epilepsy care, 
plays an important role in measuring and improving quality of care and outcomes. 
We are aiming for all Health Boards and Trusts providing care to children  
and young people with epilepsy in England and Wales to participate within  
Epilepsy12, however participation has not improved considerably since cohort 1. 
A total of 7314 children and young 
were registered and verified in 
cohort 5 (first assessment between 
1 December 2021 and 30 November 
2022) before the download date.
87.2% (6322/7250) had first year of care forms completed, locked and 
submitted, and were therefore included in the analysis for this report. 
And 2212 out of those 6322 (34.9%) children and young people had a  
new diagnosis of epilepsy. Data completeness increased from 71% in  
cohort 1 to 87% in cohort 5.
138 NHS Health Boards and Trusts providing paediatric epilepsy care in England and Wales are registered onto the 
Epilepsy12 audit. Figure 1 displays clinical and organisational audit participation between cohort 1 and 5 (2019 – 2023).
•	 78.2% (108/138) participated in the cohort 5 clinical 
audit by completing data entry and submitting 
a first year of care record for at least one child or 
young person who was eligible for inclusion within 
the audit. Clinical audit participation has increased 
compared to 74% for cohort 4.
•	 85% (117/138) submitted organisational data to 
describe the service as at 1 November 2023. This  
is a decrease compared to the 91% of Health  
Boards and Trusts who participated in the 2022 
organisational audit.
•	 In 2024, clinical audit participation ranged from 
56% to 100% of Health Boards and Trusts within 
individual OPEN UK regions, and organisational audit 
participation ranged from 67% to 100%.
•	 Overall, Epilepsy12 data submission numbers  
have remained constant over time, and there have 
not been sustained improvements in clinical and 
organisational audit participation rates.
Figure 1 – In England and Wales, percentage of NHS Health Boards and Trusts (HBT) participating in the 
Epilepsy12 clinical audit between cohort 1 and 5; children and young people having a first assessment 
between 5 July 2018 and 30 November 2022, and the organisational audit between 2019 and 2023.
0%
20%
40%
60%
80%
100%
Cohort 1
2019
Cohort 2
2020
Cohort 3
2021
Cohort 4
2022
Cohort 5
2023
HBT particiaption
Clinical Audit
Organisational Audit
Clinical Audit
Epilepsy12: 2024 Combined organisational and clinical audits: Report for England and Wales, Cohort 5
5

	 Epilepsy12 data collection and reporting
Key message 2: Widening and 
strengthening epilepsy team provision
Epilepsy Specialist Nurses (ESNs) are essential members of  
epilepsy teams for children and young people, and have extending 
key responsibilities including care planning, and within this, 
discussions around Sudden Unexpected Death in Epilepsy  
(SUDEP), ‘service contactability’, planning with schools,  
transition and mental health support.
 
New data capture platform
Epilepsy12 launched a new platform in 
December 2023 to collect and report 
audit data. The novel system streamlines 
data entry and has features which 
support benchmarking, catalyse service 
improvement and minimise both data 
entry errors and potential gaps in  
patient care.
 
More frequent, public facing reporting 
An interactive accessible dashboard was 
published in July 2023 to maximise the 
impact of audit data. The dashboard 
displays KPI data at Health Board/Trust, 
ICB, NHSE region, OPEN UK region, 
country and national levels. Data was 
initially updated on a quarterly basis, 
ahead of beginning monthly refreshes  
in 2024. Access the dashboard here.
 
Epilepsy
Specialist
Nurse
Epilepsy Specialist Nurses
80.7% (1786/2212) of children and young 
people diagnosed with epilepsy had input 
from an Epilepsy Specialist Nurse within 
the ﬁrst year of care.
80.7%
KPI 2
Epilepsy Specialist Nurse (ESN)  
input and provision
80.7% (1786/2212) of children and young people 
diagnosed with epilepsy had input from an Epilepsy 
Specialist Nurse (ESN) within the first year of care  
(KPI 2). ESN input has increased gradually over time 
from 69% in cohort 1, (73%, 76% and 77% in cohorts 2,  
3 and 4 respectively). 
•	 Within the 138 Health Boards and Trusts participating 
in the 2023 organisational audit, the mean whole-
time equivalent (WTE) of ESNs within a service was  
1.6 WTE, an increase from 0.5 in 2009.  
•	 93.2% (109/117) of Health Boards and Trusts had 
ESN provision, indicated by having at least some 
contracted hours of ESN support. 
Epilepsy12: 2024 Combined organisational and clinical audits: Report for England and Wales, Cohort 5
6

Care planning 
Comprehensive care planning for children 
and young people with epilepsy was routinely 
undertaken in 91% (106/117) of participating Health 
Boards and Trusts.  
•	 80.8% (1787/2212) of children and young people 
with epilepsy had evidence of care planning 
agreement within the first year of care (KPI 9a).
•	 However, only 64.8% (1433/2212) of children and 
young people with epilepsy had documented 
evidence of communication regarding core 
elements of care planning within the first 
year of care (KPI 9b). Within this indicator, the 
proportion with evidence of SUDEP discussions 
was 66.3%, whereas performance was >90% for all 
other care planning sub-metrics. 
Support in schools 
Over 90% (105/117) of participating Health 
Boards and Trusts offered ESN support for school 
meetings and School Individual Health Care Plan 
(IHP) facilitation. 
•	 However, only 38.9% (573/1472) of children and 
young people with epilepsy aged 5 years and 
above had evidence of a School IHP within the 
first year of care (KPI 10). This indicator was 37% 
in cohort 4, 36% in cohort 3 and 32% in both 
cohorts 1 and 2. 
Transition from paediatric to adult 
services 
91% (106/117) of participating Health Boards and 
Trusts indicated having an agreed referral pathway to 
adult services. 72% (84/117) used structured transition 
resources, 56% (65/117) had outpatient clinics specifically 
for young people with epilepsy and 68% (80/117) 
involved both adult and paediatric professionals in 
transition services. 
 
 
School Individual 
Health Care Plan
38.9% (573/1472) 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.
38.9%
KPI 10
SCHOOL
INDIVIDUAL
HEALTHCARE PLAN
 
	 Recommendation 2
Increase the scope and breadth of the epilepsy team 
and ensure sufficient provision of Epilepsy Specialist 
Nurses (ESN) and other professionals to support their 
population needs. Core and specialised competences 
required within a team to match population needs might 
include mental health, transition from paediatric to adult 
services, learning difficulties, neurodisability, medical 
complexity, etc.
Action by: Integrated Care Boards (ICBs) in England  
and local Health Boards in Wales.
Epilepsy12: 2024 Combined organisational and clinical audits: Report for England and Wales, Cohort 5
7

Key message 3:  
Ensuring timeliness of input
Most children and young people are being seen by a Paediatrician with 
expertise in epilepsy, however the majority are waiting more than the 
recommended 2 weeks, and some are waiting more than 1 year.  
Considerable numbers of children and young people indicated as  
requiring input from a paediatric neurologist or Children’s Epilepsy 
Surgical Service (CESS) were not seen by those key professionals within 
1 year of diagnosis. Where as, 74% of children and young people with 
epilepsy achieved an MRI brain scan by 1 year, only 53% achieved this 
within the recommend 6 weeks.
Professional Input
Most children and young people 
diagnosed with epilepsy had input from 
a Paediatrician with expertise within the 
first year of care; 92% (2077/2212). 
•	 However, only 50.8% (1123/2212) 
received input within 2 weeks 
of referral (KPI 1). Note, that the 
timeliness criteria for this indicator 
was introduced in cohort 5 to align 
with the updated NICE guidelines 
published in 2022 [NG217].
•	 15.4% were waiting more than 16 
weeks to be seen by a Paediatrician 
with expertise, and for 6.4% of 
children and young people, no date 
of input from a Paediatrician with 
expertise in epilepsy was recorded 
within a year of diagnosis. 
Tertiary Input
49.2% (291/592) of children and young people 
meeting defined criteria for paediatric neurology 
referral received input of tertiary care and/or 
Children’s Epilepsy Surgery Service (CESS) referral in 
the first year (KPI 3a). Note, that the criteria for this 
indicator was revised in cohort 5 to align with the 
updated NICE guidelines published in 2022 [NG217].
•	 KPI 3b: 37.3% (41/110) of children and young 
people diagnosed with epilepsy that met CESS 
referral criteria had an epilepsy surgery referral 
within the first year of care. This has remained 
constant from 37% in cohort 4.
Figure 2 shows the percentage of children and young 
people receiving timely access to professional input 
and investigations.
Figure 2 –Time in weeks to achieving professional input and investigations since first
referral for children and young people with epilepsy in cohort 5; children and young people in 
England and Wales with a first assessment between 1 December 2021 and 30 November 2022.
Percentage of children and young people
request
made
 
 
49.2% (291/592) of children and young people
with epilepsy meeting deﬁned criteria for 
tertiary input received input from a paediatric 
neurologist or a referral to CESS 
within the ﬁrst year of care.
49.2%
KPI 
3a
Tertiary Input
Tertiary 
care
CESS 
referral
0%
10%
20%
30%
40%
50%
60%
0 – 4 weeks 4 – 8 weeks
8 – 12 
weeks
12 – 16 
weeks
16+ weeks
Input not
achieved
KPI 1. Paediatrician with expertise
KPI 5. MRI
EEG
Epilepsy12: 2024 Combined organisational and clinical audits: Report for England and Wales, Cohort 5
8

MRI Brain Scan
73.8% (535/725) of children and young people 
diagnosed with epilepsy and with defined 
indications for an MRI, had an MRI brain scan within 
their first year of care. 
•	 However, only 53.1% (385/725) had an MRI brain 
scan within the NICE recommended 6 weeks 
from request (KPI 5). Note, that the timeliness 
criteria for this indicator was introduced in cohort 
5 to align with the updated NICE guidelines 
published in 2022 [NG217].
53.6% (1154/2324) of children and young people with 
epilepsy received an EEG within 4 weeks of referral 
in cohort 5, an increase from 52% in cohort 4.
 
MRI Brain scan
53.1% (385/725) of children and young people 
with deﬁned indications for an MRI had 
an MRI brain scan within 6 weeks 
of request.
53.1%
KPI 5
	 Recommendation 3 
Establish or improve the processes and pathways in place 
to ensure children and young people receive timely access 
to care. This could include identifying and understanding 
where the gaps in provision are, or establishing structured 
referral pathways with designated coordinators.
Action by: Integrated Care Boards (ICBs) in England and 
local Health Boards in Wales.
	 Quality Improvement at York and Scarborough 	 
	
Teaching Hospitals NHS Foundation Trust 
Misplaced paper copies of individualised emergency 
seizure plans were resulting in treatment delays for 
children and young people with epilepsy presenting to 
the emergency department (ED). While 70% of families 
reported the service held sufficient information, only 20% 
felt the system was helpful to their child, and 30% felt 
their child’s school found the communication useful. 
To address these challenges, the paediatric epilepsy 
service joined the RCPCH Epilepsy Quality Improvement 
Programme (EQIP) and implemented the following 
initiatives:
1.	
Electronic medical records – Finding emergency 
seizure plans was time-consuming and delayed 
critical treatment. The service worked with the 
Trust’s IT development team and patient safety 
lead to implement an alert in hospital records for 
children and young people emergency seizure plans, 
ensuring faster access during emergencies.
2.	
Patient-held epilepsy passport – Building upon 
the RCPCH epilepsy passport, the team co-created 
a local version which incorporated feedback from 
patients, families, and NHS colleagues and offered 
more space for detailed seizure descriptions and 
emergency rescue plans. 
The outcomes so far within the Trust: 
•	
In Epilepsy12 cohort 4, 100% of children and young 
people with epilepsy had documented evidence of 
communication regarding core elements of care 
planning, and 93% had a patient-held care plan that 
was up-to-date and agreed-upon. 
•	
100% of children and young people with epilepsy had 
an emergency care plan uploaded to ED systems. 
•	
The project fostered engagement and leadership 
skills within the team, along with stronger 
collaboration with children, young people, families, 
clinicians, and internal Trust departments.
Epilepsy12: 2024 Combined organisational and clinical audits: Report for England and Wales, Cohort 5
9

•	 72.1% (1036/1436) of children and young people with epilepsy 
and convulsive seizures had an ECG within the first year  
(KPI 4). This indicator ranged from 69.4% in the most  
deprived group to 75.2% in the least deprived group. 
•	 53.1% (385/725) of children and young people with epilepsy and 
defined indications for an MRI had an MRI brain scan within 6 
weeks of request (KPI 5). This indicator ranged from 44.6% in 
the most deprived group to 57.6% in the least deprived group. 
•	 22.4% (330/1472) of children and young people with epilepsy 
had documented evidence of assessment of mental health 
issues within the first year of care (KPI 6). This indicator ranged 
from 19.1% in the most deprived group to 27.6% in the least 
deprived group.
22.4%
S.D.Q
SCREENING
Paediatric
Neurologist
Assessment of mental 
health issues
22.4% (330/1472) of children and young 
people with epilepsy aged 5 years and 
over had evidence of assessment of 
mental health issues.
KPI 6
Figure 3 – Assessment of mental health issues (KPI 6) by Health Board and Trust in England and Wales, cohort 5 (children and young people with a 
first assessment between 1 December 2021 and 30 November 2022). Each participating Health Board or Trust (HBT) is represented by a vertical bar 
in the order of the percentage score, including the 28 HBTs scoring 0% in this graph.
Deprivation quintiles were derived by matching home postcodes 
to the English (IMD, 2019) and Welsh (WIMD, 2019) indices of 
multiple deprivation data. Achievement of KPIs varied between 
Health Boards and Trusts, regions and deprivation groups. Higher 
performance results were seen in the least deprived groups for 
several KPI measures compared to the most deprived group. 
The variation in the assessment of mental health issues (KPI 6) 
between Health Boards and Trusts and deprivation groups is 
demonstrated in figure 3 and 4 respectively.
Key message 4: Tackling variations in care
Epilepsy12 is increasingly examining quality of care data against different 
characteristics and there is emerging evidence of variation. Documentation of 
mental health assessment is lower in those children in more deprived groups 
where mental health issues are more prevalent1. There are also differences in 
achieving ECG and MRI investigations for children from more deprived groups.
1F Reiss, 2013; Socioeconomic inequalities and mental health problems in children and adolescents: A systematic review.
0%
20%
40%
60%
80%
100%
Health Board/Trust
National Performance
Percentage of children and young people
Epilepsy12: 2024 Combined organisational and clinical audits: Report for England and Wales, Cohort 5
10

	 Recommendation 4 
Integrated Care Boards (ICBs) and local Health Boards 
should develop models of engagement that enable 
groups where there may be inequalities, eg. within 
the Core20PLUS5 framework, to contribute to service 
improvement. This can be by identifying challenges  
and co-creating alternative service models to ensure 
equitable access and care for epilepsy aligned with work 
supporting other long-term health conditions.
Action by: Integrated Care Boards (ICBs) in England and 
local Health Boards in Wales, in collaboration with OPEN 
UK networks.
	 Recommendation 5
Support participation and benchmarking against relevant 
ongoing quality improvement projects, in order to promote 
system-wide shared learning, collaboration and knowledge 
exchange.
Action by: Integrated Care Boards (ICBs) in England and 
local Health Boards in Wales, in collaboration with OPEN 
UK regional networks.
	 RCPCH Epilepsy Quality Improvement Programme (EQIP)
Since the launch of the EQIP in 2019, all participant 
paediatric epilepsy service teams have experienced 
a transformation in terms of the skills learned from 
expert trainers and improved team leadership. Teams 
have benefited from the knowledge of methodologies 
provided through online webinars, available resources, 
and templates to further understand how to plan, 
measure, and test quality improvement. Monthly 
coaching and support have facilitated continuous 
progress, fostering incremental changes in team 
interactions and overall service delivery. The training 
has served as a catalyst for teams embarking on their 
improvement journey, extending their change ideas 
beyond initial testing areas. The teams are now more 
confident in sharing best practices locally through 
network meetings, contributing to a culture of 
continuous improvement.
Case studies, video presentations and examples of quality 
project journeys are available on the EQIP website. 
Participating teams have chosen a variety of areas of 
epilepsy care to focus their improvement projects on, 
including reducing waiting times, mental health, SUDEP, 
care planning and transition. 
The fourth wave of EQIP began in October 2023 with 
an in-person training launch, and a celebratory event 
was held in June 2024 to showcase the improvement 
projects. 
•	 In 2023, 30% (36/117) of Health Boards 
and Trusts routinely, formally screened 
for mental health disorders, which is 
an increase from 20% (25/128) in 2022, 
and 31% (36/117) routinely, formally 
screened for neurodevelopmental 
conditions, an increase from 26% 
(33/128) in 2022. 
•	 74% (84/117) of Health Boards and 
Trusts had agreed mental health 
referral pathways in 2023, however 
only 18% (21/117) of epilepsy services 
provided co-located mental health 
provision, as recommended within the 
NHS England Paediatric Epilepsy best 
practice criteria (BPC).
0%
5%
10%
15%
20%
25%
30%
Not Indicated
Least deprived
Second least deprived
Third least deprived
Second most deprived
Most deprived
National performance
Figure 4 – Assessment of mental health issues (KPI 6) by deprivation quintile in cohort 
5 (children and young people with a first assessment between 1 December 2021 and 30 
November 2022). Deprivation quintiles were derived by matching home postcodes to the 
English (IMD, 2019) and Welsh (WIMD, 2019) indices of multiple deprivation data.
Epilepsy12: 2024 Combined organisational and clinical audits: Report for England and Wales, Cohort 5
11

Our highlights this year:
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
  Did you know?
We know that there is great 
work happening, so we asked 
600 clinicians at the national 
conference what they are 
proud of and made an  
A-Z of the answers. 
Download the poster here  
Auditing epilepsy care 
Being able to offer support at home and out of hours as well as in the hospital
Collaborating with children and young people = patient-centred care
Diversity and inclusion in epilepsy care 
Excellent specialist nurses (ESNs!)
Families' mental health focus
Genetic testing
Helping families learn more about epilepsy and medication
Inclusivity, accessibility and multicultural services 
Joined up working with schools, youth workers, family support workers & MDTs
Ketogenic diet services 
Listening to children, young people and families 
Me and Epilepsy Tool 
Newly diagnosed being given safety netting advice 
Online referrals improving patient experience 
Proud of offering nurse-led clinics and teenage clinics 
Quality of epilepsy care for children, young people and their families 
Reducing seizure burden 
SUDEP conversations  
Teaching about reducing risk and creating safety care plans
Unafraid children and young people learning about epilepsy
Voices of children and young people promoted and acted on
Waiting times reduced
Xenodochial epilepsy services - hospitable or kind to strangers
Young adults’ transitions clinics
Zone of care around children, young people and their families
A-Z of things of which we
are proud in our Epilepsy
Services
This A-Z was created by the Epilepsy12 Youth Advocates at the Epilepsy12 OPEN
UK Conference with epilepsy teams. Check it out for new ideas from epilepsy
services, or spot ones you might already be doing!
When we think of our epilepsy care, we are proud of:
© RCPCH 2024. The Royal College of Paediatrics and Child Health is a registered charity in England and Wales (105774) and in Scotland (SCO38299)
We want all children and young people to  
have the best health possible, at home, at 
school or in the care we have from health 
services, and for this to be the same across  
the UK. It needs to be fair for everyone as this  
is part of the United Nation Convention  
on the Rights of the Child.  
These are not gifts;  
these are our rights. 
 
 
We need you to make sure this happens, 
regardless of where you live, what age you are, 
what your gender is, what language you speak, 
if you have a disability or what your ethnicity is. 
Ch
ild
re
n, 
yo
un
g 
pe
op
le
an
d f
am
ily
 v
oi
ce
Me thinking about how I find a work experience 
placement that will take me on,
Me being told not to think about going to university 
because of my epilepsy being a barrier,
Me being a sibling to an older brother with epilepsy,
Me loving animals,
Me being worried about having a seizure and  
people not knowing how to put me into the  
recovery position,
Me thinking about how different it will be in adult 
services, and not sure how I’ll manage,
Me wishing that I got a school care plan 10 years 
sooner than I did, then I wouldn’t have missed out  
on so much, 
Me feeling lucky to have an ESN and a consultant 
paediatrician who talks to me, not just my parents.’ 
This year we’ve been thinking 
about “Epilepsy is more than the 
condition, it is epilepsy with…”
•	 Presented to the Epilepsy12 OPEN UK 
Conference about “epilepsy with… 
and what it means to us.” 
•	 Trained as youth facilitators, co-facilitated 
the Epilepsy Innovators project, training 10 
hospitals in engagement.
•	 Won the HQIP Clinical Audit Heroes award 
for Patient and Public Involvement in summer 
2023 and had an article published on our work.
•	 Felt really proud that our ESN for our project, 
Jill, won the UK wide RCPCH &Us Voice 
Champion Award 2023.
•	 Started our 2-year project on family mental 
health and independent life skills.
Epilepsy12: 2024 Combined organisational and clinical audits: Report for England and Wales, Cohort 5
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)  
27A Harley Place,  
London, W1G 8LZ
Royal College of 
Paediatrics and Child Health
RCPCH
Published by the RCPCH 
Version 1.0: July 2024
National Clinical Audit of Seizures and 
Epilepsies for Children and Young People
EPILEPSY12
© 2024 Healthcare Quality Improvement Partnership (HQIP)