Epilepsy12 2025 Annual Report
Source: data.gov.uk (2025-07-10)

Epilepsy12 2025 National organisational and clinical audits - combined report on 2024 data. This is a combined report of the organisational and clinical audits for Round 4 Cohort 6, published in 2025.

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. This has since been extended by HQIP for an additional two years, allowing the audit to run through to 31 March 2027.

The results are of the organisation of paediatric epilepsy services for children and young people in England and Wales as described at November 2024, and the standard of clinical care provided by services that focuses on patients in ‘cohort 6’. This is children and young people who had a first paediatric assessment for a ‘paroxysmal episode’ (or episodes) between 1 December 2022 and 30 November 2023.

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-2025

Royal College of 
Paediatrics and Child Health
RCPCH
National Clinical Audit of Seizures and 
Epilepsies for Children and Young People
Epilepsy12 2025 combined  
organisational and clinical audits:
Report for England and Wales
Clinical Cohort 6 – The first year of care for children and young people following a first 
paediatric assessment undertaken between 1 December 2022 and 30 November 2023
EPILEPSY12

Epilepsy12 Summary Report for 2025 
combined organisational and clinical audits
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 and crown 
dependencies. Find out more at www.hqip.org.uk/
national-programmes.
Having also delivered Rounds 1 to 3 between 2009 and 
2021, the RCPCH was awarded the contract to deliver 
Round 4 of Epilepsy12 from 1 April 2022 to 31 March 2025, 
with a further two-years to 31 March 2027.
Front Cover – ‘Live your Dream 1’ is an artwork created by Janet Lee, an international 
artist from Malaysia who lived with epilepsy (1989 - 2023). This was created using acrylic 
paints on a canvas surface, and with the following message: someone once said, “You’ll 
never know how far you can fly until you spread your wings. It is another glorious day. 
Follow your heart and set yourself free.”
  Thank you
The Epilepsy12 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.
© 2025 Healthcare Quality Improvement Partnership (HQIP)
Contents 
Introduction	
3
Results at a glance	
4
National recommendations	
5
Key Themes	
5
Contributing & Participating 	
6
Building community and  	
8 
neighbourhood provision
Strengthening epilepsy pathways	
9
Supporting mental health 	
11 
and wellbeing
Epilepsy12 Youth Advocates 	
12
Epilepsy12: 2025 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 6
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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 epilepsy.   
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 report and its accompanying 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 6’ (find out more here), and 
the organisation and structure of 
epilepsy services as at November 
2024 (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 
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 caring for 
children and young people with epilepsies 
to regional epilepsy networks. Guided by 
the OPEN UK Working Group, it represents 
17 regional epilepsy networks in the UK 
and the British Paediatric Epilepsy Group. 
OPEN UK:
•	 Encourages collaboration and sharing  
of ideas, pilots, and resources.
•	 Is a national resource and professional  
UK body for information, support, data, 
and clinical input.
•	 Maintains connections with local, 
regional, and national funding bodies.
Click here to find out more.
Epilepsy12 
and Wales 
Wales has ongoing representation within the UK Epilepsy Programme Board and OPEN UK. 
Epilepsy12 and NHS Wales are working together and plan to formalise Welsh representation 
within the Epilepsy12 Project Board.
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. A National bundle of care 
for CYP with epilepsy was published, consisting of key standards and 
recommendations around the care and delivery of epilepsy services to 
support systems with epilepsy quality improvement within four areas:
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.
To support the identification and tracking of local improvement, 
key Epilepsy12 audit metrics are included as measures against the 
recommendations for ICBs within the bundle. Encouragingly, following the 
publication of the national bundle of care for CYP with epilepsy in October 
2023, the Epilepsy12 cohort 6 data findings published in this report identify 
improvements across some of the key areas targeted for improvement in the 
bundle, including mental health provision, the proportion of children and 
young people (CYP) seen by an epilepsy specialist nurse and the proportion  
of CYP who met the CESS referral criteria and had evidence of a referral.
Epilepsy12: 2025 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 6
3

Audits 
RCPCH
Results at a glance: Update
EPILEPSY12
Below are results from the Epilepsy12 ‘cohort 5’ (2023) and ‘cohort 6’ (2024) clinical audit, 
focusing on the 10 key performance indicators (KPIs) relating to the first year of care 
provided to children and young people with a new diagnosis of epilepsy in England and 
Wales. For more information, please visit our website (or use the QR code to the right).  
Mental health
Involvement of appropriate professionals
KPI 1 Children and young people seen by a consultant 
paediatrician with expertise in epilepsies within  
two weeks from first paediatric assessment. 
KPI 2 Children and young people seen by an 
epilepsy specialist nurse (ESN) within the  
first year of care.
 
KPI 3b Children and young people who met CESS 
referral criteria had evidence of a CESS referral.
KPI 3a Children and young people 
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.
Appropriate assessment
KPI 4 Children and young people with 
convulsive seizures had an ECG within 
the first year of care.
KPI 5 Children and young people with 
defined indications for an MRI had an 
MRI within 6 weeks of request.
LEAD
Cohort 5
Cohort 6
50.8%
32.4%
Cohort 5
Cohort 6
80.7%
85.6%
Epilepsy
Specialist
Nurse
Cohort 5
Cohort 6
49.25%
49.2%
Cohort 5
Cohort 6
37.3%
42.0%
Cohort 5
Cohort 6
72.1%
83.4%
Cohort 5
Cohort 6
53.1%
49.2%
Cohort 5
Cohort 6
80.8%
85.8%
KPI 7 Children and young people with a mental 
health problem had evidence of receiving mental 
health support within the first year of care.
KPI 6 Children and young people with 
documented evidence that they  
had been asked about mental health.
KPI 8 Female young people who are 12 years and 
over, currently on valproate treatment had a  
risk acknowledgement form completed. 
KPI 9a Children and young 
people had evidence of care 
planning agreement within 
the first year of care.
KPI 9b Children and young people had 
documented evidence of communication 
regarding core components of care planning.
KPI 10 Children and young people 
aged 5 years and above had evidence 
of a School Individual Health Care 
Plan within the first year of care.
Cohort 5
Cohort 6
22.4%
38.2%
Cohort 5
Cohort 6
61.5%
76.6%
Cohort 5
Cohort 6
100%
100%
Cohort 5
Cohort 6
64.8%
67.4%
Cohort 5
Cohort 6
38.9%
67.2%
HEALTHCARE
PLAN
Paediatric
Neurologist
Tertiary 
care
CESS 
referral
Care Planning
4
Epilepsy12: 2025 Combined organisational and clinical audits: Report for England and Wales, Cohort 6

National Recommendations
Agree recommendations around appropriate 
allocation of time within multidisciplinary epilepsy 
teams and individual job plans for epilepsy specific 
audit participation, quality improvement and service 
leadership.
Action by: The UK Epilepsy Programme Board  
and the Organisation of Paediatric Epilepsy Networks 
in the UK (OPEN UK) working group.
2
Support Health Boards and Trusts identified as non-
participation outliers. Identify specific barriers and 
enablers to facilitate and resource epilepsy team 
involvement. Work with young people and families, 
including the Epilepsy12 Youth Advocates and RCPCH 
Engagement Team, to help promote  
and support local participation.
Action by: Integrated Care Boards across  
England and Local Health Boards across Wales.
1
To strengthen community and neighbourhood 
provision and address limitations in assessing quality of 
transition from paediatric to adult services, the long-
term plans for NHS services in England and Wales 
should focus on the following to support children and 
young people with epilepsies:
•	 Developing digital tools and systems to support 
equitable communication, documentation and 
care planning, passports, mental health screening, 
transition, self-management and patient reported 
outcome and experience measures (PREM/PROM) 
within the home, community and education 
settings. This should include connecting families to 
their care quality information via NHS digital systems 
and the Epilepsy12 data platform.
Action by: NHS England and NHS Wales.
3
5
Support improvements in mental health provision, 
including screening, signposting, triaging, co-locating 
and clinical management, for children and young people 
with epilepsy in England and Wales. This could be 
achieved by:
•	 Completing the evaluation of mental health pilots in 
England including how they impact on Epilepsy12 
performance metrics.
•	 Identifying opportunities for scaling and  
sustaining equitable mental health provision.
Action by: NHS England Epilepsy Oversight  
Group and Integrated Care Boards across England. The 
Welsh Government and Local Health Boards across 
Wales.
Improve timely and equitable access to tertiary and 
epilepsy surgery services by:
•	 Reviewing and updating referral criteria and 
pathways for epilepsy surgical evaluation, ensuring 
ongoing consistency between the evidence base, 
national recommendations and regional and local 
practices. 
•	 Reviewing the specification of tertiary neuroscience 
services to ensure commissioning towards a 
sustainable workforce and capacity to meet the 
needs of local populations.
Action by: NHS England, the Children’s Epilepsy 
Surgery Service (CESS) in England and Integrated Care 
Boards across England. The Welsh Government and 
Local Health Boards across Wales.
4
Key Themes
The following section describes key findings and 
messages from the 2025 analysis, alongside national 
recommendations based on the evidence. 
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 the  
2025 Epilepsy12 Longitudinal Trends Report.
Epilepsy12 reports clinical and organisational data at 
local, regional and national levels. To align with the  
NHS England Core20PLUS5 approach to reducing  
health inequalities for children and young people,  
we are now also exploring variation by demographics. 
Last year, the Key Performance Indicators (KPIs) were 
broken down by ethnicity, deprivation, age, gender 
and geography. This year, the metrics are broken down 
further by the presence/absence of; 1) mental health 
conditions, and, 2) neurodevelopmental conditions or 
learning disabilities. 
Key Theme 1
Key Theme 2
Key Theme 3
Key Theme 4
Key Theme 1
Epilepsy12: 2025 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 6
5

*Deprivation quintile was derived by matching home postcodes to the English (IMD, 2019) and Welsh (WIMD, 2019) 
indices of multiple deprivation data. 
Key theme 1: Contributing and participating
There have been significant increases in total cohort size and data completeness 
this year. This improves the ability for Epilepsy12 to have confidence when drawing 
conclusions from the audit data, particularly when exploring longitudinally trends 
and variation between subgroups.
Achieving complete participation remains an issue; 30 Health Boards and Trusts did 
not enter clinical audit data this year. 
Cohort 6 
Prior to the January 2025 deadline, 3,105 children and young people with an epilepsy diagnosis 
had a completed first year of care form in cohort 6, and were therefore included in the analysis for 
this report. Epilepsy12 processes 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. 
Description of cohort 6
The median age at first paediatric 
assessment was 7.9 years. 
28.5% (884/3,105) of children  
and young people lived in the most 
deprived quintile.
54.4% xx-xxxx-xxxx,105) of children  
and young people had ‘male’ 
indicated as their sex.
Most children and young people were 
‘White’ (64.8%). 8.2% were ‘Asian’,  
5.1% were ‘Black’ and 16.1% did not 
have their ethnicity indicated.
9% (278/3,105) of children and young 
people had a mental  
health condition identified.
27.5% (854/3,105) had a 
neurodevelopmental condition  
and/or learning disability identified.
Participation 
150 NHS Health Boards and Trusts providing paediatric epilepsy care in England and Wales were registered into 
the Epilepsy12 audit, via a bespoke data platform launched in December 2023. This is an increase from the 138 
Health Boards and Trusts registered to the old platform used in previous years.
•	 80.0% (120/150) of registered Health Boards and Trusts 
registered into Epilepsy12 participated in the cohort 6 
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. Clinical audit 
participation has increased compared to 78% (108/138) 
for cohort 5 and 74% (103/140) in cohort 4.
•	 75.5% (114/151) submitted organisational data to 
describe their service as at 1 November 2023. This 
includes data from Jersey General Hospital which 
registered to participate after the clinical audit phase 
was underway. This is a decrease compared to the 85% 
(117/138) and 91% (120/140) of Health Boards and Trusts 
who participated in the 2023 and 2022 organisational 
audit respectively.
Epilepsy12: 2025 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 6
6

	 Epilepsy12 data collection and reporting
Epilepsy12, as the only national programme auditing 
and reporting on paediatric epilepsy care, plays an 
important role in measuring and improving quality 
of care and outcomes. We are also committed to 
reducing the data burden for clinical teams.
The launch of a bespoke Epilepsy12 data platform has 
considerably reduced the time required for data entry by 
hosting a minimised dataset and focused ascertainment 
methodology. The launch of the real-time and monthly 
KPI dashboards have improved the impact of audit data 
further, allowing services to benchmark and track their 
performance and improvement at frequent intervals. 
Access the monthly dashboard here.
The new platform has the capability to link directly to 
NHS digital systems via an Application Programme 
Interface (API) to allow data to flow automatically 
between patient electronic records and the audit 
platform. This will reduce data 
burden by eliminating manual data 
entry, reducing duplication of effort 
and streamlining processes. While 
further standardisation of epilepsy 
data recording within the NHS is 
needed for full implementation, 
Epilepsy12 has funded early work on 
an Epilepsy Information Standard in 
collaboration with the Professional 
Records Standards Body (PRSB) to 
support the interoperability needed. 
Find out more here. 
Additionally, Epilepsy12 is exploring 
ways to introduce young person and  
family facing elements into the new platform.
Figure 1 – the number of 
children and young people  
with epilepsy in each cohort.
Cohort size 
3,152 children and young people with epilepsy were registered onto the Epilepsy12 platform and allocated to cohort 
6 before the January data submission deadline. 3,105 had fully completed first year of care forms and were included 
in analyses. 
The cohort size has increased considerably in cohort 6, compared to the previous 5 cohorts which all had around 
2,000 children and young people with epilepsy. Data completeness has also improved from 86% in cohort 5 to 98.5% 
(3,105/3,152) in cohort 6. The increased cohort size and improved data completeness results may be a reflection of  
the streamlined data entry process established on the new Epilepsy12 data platform, launched for cohort 6. Find  
out more information below.
Time allocated for audit, quality improvement and leadership 
In 2024, 40.4% (46/114) of Health Boards/Trusts did not have any time specified towards local 
epilepsy audit and quality improvement (QI) activity for teams, for example in nurse, doctor 
or allied professional’s job plans. For teams with some time indicated, the median number of 
hours per week for audit/QI was 1 hour. 35.1% (40/114) of Health Boards and Trust did not have 
any time specified for epilepsy leadership. For teams with some time indicated, the median 
numbers of hours per week for epilepsy leadership was 1 hour.
0
500
1000
1500
2000
2500
3000
3500
Cohort 6
Cohort 5
Cohort 4
Cohort 3
Cohort 2
Cohort 1
Number of children and young people
Epilepsy12: 2025 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 6
7

Key theme 2: Building community 
and neighbourhood provision
Considerably more children and young people with epilepsy have 
a School Individual Health Care Plan in place within the first year 
of care, compared to previous years where it had been static. 
Progress has also been made in the agreement and contents within 
comprehensive care planning and key elements within transition 
services. There remain limitations in assessing and reporting the 
quality of transition from paediatric to adult services.
Care planning
85.8% (2,665/3,105) of children and young people with epilepsy had evidence of care planning agreement within 
the first year of care in cohort 6 (KPI 9a). 67.4% (2,093/3,105) had evidence of achieving all core elements of care 
planning (KPI 9b). Table 1 describes national results for the sub-metrics within KPI 9a and 9b.
Transition from paediatric 
to adult services 
In 2024, 88.6% (101/114) of participating Health Boards 
and Trusts had an agreed referral pathway to adult 
services, compared to 91% in 2023. 76.3% (87/114) used 
structured transition resources, 61.4% (70/114) had 
outpatient clinics specifically for young people with 
epilepsy and 66.7% (76/114) involved both adult and 
paediatric professionals in transition services. In 2023, 
the results were 72% (84/117), 56% (65/117) and 68% 
(80/117), respectively.
KPI 10: 67.2% (1,427/2,125) of children and young people 
with epilepsy aged over 5 years had evidence of a 
School Individual Health Care Plan within the first year 
of care in cohort 6. This was a large increase compared 
to previous cohorts, for example 38.9% (573/1,472) 
in cohort 5, 36.9% (577/1,562) in cohort 4 and 36.1% 
(499/1,381) in cohort 3.
 
School Individual 
Health Care Plan
67.2% (1427/2125) of children and young 
people aged over 5 years had evidence 
of a School Individual Healthcare Plan 
within ﬁrst year of care.
SCHOOL
INDIVIDUAL
HEALTHCARE PLAN
67.2%
KPI 10
HEALTHCARE 
PLAN
Table 1 – Cohort 6 results for Key Performance indicator (KPI) 9a and 9b in England and Wales.
England and Wales
KPI 9a. All three elements of care planning agreement
85.8% (2,665/3,105)
Individualised epilepsy document or copy clinic letter that includes care planning information 
90.8 % (2,819/3,105)
Evidence of agreement between the person, their family and/or carers as appropriate 
87.6% (2,719/3,105)
The care plan has been updated where necessary
87.5% (2,716/3,105)
KPI 9b. All core elements of care planning
67.4% (2,093/3,105)
If prescribed rescue medication, prolonged seizures care plan
94.7% (748/790)
Water safety
86.7% (2,691/3,105)
First aid
89.3% (2,772/3,105)
General participation and risk
88.4% (2,744/3,105)
SUDEP
68.5% (2,127/3,105)
Service contact details
90.4% (2,806/3,105)
Epilepsy12: 2025 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 6
8

Key theme 3: Strengthening epilepsy pathways
Epilepsy Specialist Nurse (ESN) provision is steadily improving over time    
since we began Epilepsy12 in 2009. More and more children and young 
people are having input from an ESN within the first year of care. 
Since previous reports, a greater proportion of children and young 
people meeting the criteria for Children Epilepsy Surgical Services 
(CESS) are being referred to CESS within the first year of care. 
There are emerging issues with timeliness within the initial referral and 
early management phases of paediatric seizure and epilepsy pathways. 
Paediatrician with expertise  
in epilepsy
•	 KPI 1: 32.4% (1,007/3,105) of children and young 
people with epilepsy were seen by a ‘consultant 
paediatrician with expertise in epilepsy’ within two 
weeks of referral. This was a decrease from 50.8% 
(1,123/2,212) in cohort 5.
•	 90.2% (2,801/3,105) were seen within the first year of 
care, a decrease from 92% (2,077/2,212) in cohort 5.
•	 96.5% (110/114) of Health Boards/Trusts had some 
(ie. greater than 0) ‘consultant paediatrician with 
expertise’ provision. The remaining 4 Health Boards/
Trusts had 0.
•	 The mean Whole Time Equivalent (WTE) in Health 
Boards and Trusts for ‘consultant paediatrician with 
expertise’ was 2.2 WTE in 2024, a decrease from 2.5 
WTE in 2023.  
Epilepsy Specialist Nurse (ESN)
•	 KPI 2: 85.6% (2,659/3,105) of children and young people with epilepsy were seen by an ESN within the first year 
of care. This was an increase compared to 80.7% (1,786/2,212) in cohort 5.
•	 96.5% (110/114) of Health Boards/Trusts had some (ie. greater than 0) ESN provision. The remaining 4 Health 
Boards/Trusts had 0 WTE.
•	 The mean WTE in Health Boards and Trusts for Epilepsy Specialist Nurses (ESN) was 1.8 WTE in 2024, an increase 
from 1.6 in 2023. 
Previously, Epilepsy12 has explored ‘input’ from key 
healthcare professionals. In the new platform and from 
cohort 6 onwards, we have refined the terminology of 
several KPIs to clarify the definition of ‘input’. KPIs 1 – 3 
now identify those children and young people being 
‘seen by’ the relevant professional. 
This includes emergency department reviews, face-to-
face clinic appointments or virtual appointments, and 
captures the direct clinical interactions between the 
professional and the family in clinical or acute settings. 
Interactions between professionals, not involving the 
families, are not included. 
YOUTH 
WORKER
SOCIAL 
WORKER
 
Paediatrician with expertise 
in epilepsy within 2 weeks
32.4% (1007/3105) of children and young 
people were seen by a consultant 
paediatrician with expertise in epilepsies 
within two weeks from ﬁrst 
paediatric assessment.
LEAD
32.4%
KPI 1
Epilepsy12: 2025 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 6
9

Investigations
The majority of children and young people with epilepsy received an EEG (98.5% (3,057/3,105)). In England 
and Wales, the median wait time for an EEG was 3.3 weeks.
•	 KPI 5: 49.2% (1,181/2,401) of children and young people with epilepsy and defined indications for an MRI 
had an MRI brain scan within 6 weeks of request. This was a decrease from 53.1 % (385/725) in cohort 5.
•	 The MRI indications have evolved over time to align with NICE guidelines, creating challenges with 
longitudinal comparisons.
49.2% xx-xxxx-xxxx) of children and young people with 
epilepsy meeting defined criteria for tertiary input, 
received input of tertiary care and/or Children’s 
Epilepsy Surgical Service (CESS) referral within the first 
year of care (KPI 3a). This measure has shown little 
improvement from previous cohorts.
•	 KPI 3b: 42.0% (94/193) of children and young people 
with epilepsy meeting CESS referral criteria had 
evidence of CESS referral within the first year of care. 
This was an increase compared to previous cohorts, 
for example 37.3% (41/110) in cohort 5. 
19% (22/114) of Health Boards and Trusts had  
some (ie. greater than 0) paediatric neurologist 
provision. This ranged from 9.1% (East of England) to 
47.1% (London) across NHS England regions and Wales.
•	 The mean WTE in Health Boards and Trusts for 
paediatric neurologists was 1.2, which is an increase 
from 0.8 in 2023. Mean WTE ranged from 0.1  
(South West) to 3.6 (North West) across NHS  
England regions and Wales.
Figure 2 describes the mean Whole Time Equivalent (WTE) results for consultant paediatricians with 
‘expertise in epilepsy’, epilepsy specialist nurses (ESN) and paediatric neurologists in England and Wales 
over time. Note, that these results include all Health Boards and Trusts participating in the relevant 
organisational audit, including those with 0 WTE of the professional. 
Mean Whole Time Equivalent
0.0
0.5
1.0
1.5
2.0
2.5
3.0
2009
2014
2018
2019
2020
2021
2022
2023
2024
Consultant Paediatrician 
with ‘expertise in epilepsy’
Epilepsy specialist nurse
Paediatric neurologist 
1.2
1.8
2.5
2.4
0.8
0.7
0.7
1.0
2.1
2.3
2.3
2.4
1.4
0.9
0.8
1.3
1.8
1.8
0.5
0.6
1.4
0.8
1.2
1.6
2.2
CESS Referral Criteria
Epilepsy surgery referral
42.0% (81/193) of children and young people 
who met Children's Epilepsy Surgical Service 
Referral (CESS) criteria had evidence of a CESS 
referral within the ﬁrst year of care.
42.0%
KPI 
3b
Figure 2 – Mean Whole 
Time Equivalent (WTE) of 
healthcare professionals 
in England and Wales 
between 2009 and 2024.
Epilepsy12: 2025 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 6
10

Key theme 4: Supporting mental health 
and wellbeing
Although there are some encouraging improvements in mental 
health enquiry and resulting provision, there remain many 
children and young  people whose mental health is not being 
assessed, supported and resourced as needed. 
Mental health provision
74.6% (85/114) of Health Boards and Trusts had agreed referral pathways for mental health conditions  
(2023 = 73.5%). Only 25.4% (29/114) formally screened for mental health disorders (2023 = 30%) and 22.8% (26/114) 
facilitated mental health provision within epilepsy clinics: ‘co-located mental healthcare’ (2023 = 18%).
Research suggests there is a high incidence of 
mental health conditions among children and 
young people with long term conditions1. Only 
9% (278/3,105) of children and young people 
in cohort 6 had a mental health condition 
identified, suggesting under-reporting of 
mental health.
•	 38.2% (811/2,125) of children and young 
people with epilepsy, aged 5 years and over, 
had documented evidence of assessment of 
mental health issues within the first year in 
cohort 6 (KPI 6). This increased from 22.4% 
(330/1472) in cohort 5.
•	 76.6% (213/278) of children and young 
people with epilepsy that had an identified 
mental health problem, also had evidence 
of receiving mental health support within 
the first year of care in cohort 6 (KPI 7). This 
increased from 61.5% (83/135) in cohort 5.
1. Buelow JM, et al. (2003) Behaviour and mental health problems in children with epilepsy and low IQ. Dev Med Child Neuro
	 RCPCH Epilepsy Quality Improvement Programme (EQIP)
The RCPCH Epilepsy Quality Improvement 
Programme (EQIP) ran from 2019 to 2024, bringing 
together paediatric epilepsy teams across England 
and Wales to learn, implement, and share quality 
improvement (QI) projects. Their case studies offer 
valuable insights into local improvements, focusing on 
key themes such as mental health support, transition 
pathways, and health inequalities.
The EQIP Programme 2019–2023 Impact Report 
highlights how quality improvement training helps to 
transform NHS services. It showcases how incremental 
changes and whole-team training enhances patient 
care, reducing wait times, addressing mental health 
challenges, and improving outcomes for children and 
young people with epilepsy. You can access the full 
report here.
The 2023–2024 Summary Report for EQIP is now 
available. Building on the 2019–2023 Impact Report,  
it demonstrates ongoing improvements in patient  
care and service delivery for children with epilepsy.  
View the report here.
S.D.Q
SCREENING
Paediatric
Neurologist
Assessment of mental 
health issues
38.2% (811/2125) of children and young 
people aged 5 years and over had 
documented evidence that they had 
been asked about mental health.
38.2%
KPI 6
Epilepsy12: 2025 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 6
11

Epilepsy12 Youth Advocates
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.
After reviewing the Epilepsy12 cohort 6 results, we were thrilled to see that the number of children and young 
people with epilepsy aged above 5 years who had a School Individual Health Care Plan within the first year of care 
had doubled. This is a significant improvement from cohort 5, though we acknowledge that further work is needed. 
We’d love to share our experiences and top tips to help support other  
children and young people in getting a School  
Individual Health Care Plan in place.
“I was diagnosed with epilepsy in 2018. My parents and I met with  
the School Nurse and Headmaster to create a plan. Teachers were 
informed and updates were made as needed. It was a learning curve for 
everyone. Before starting Senior School, the Senior School Nurse contacted 
us to ensure a plan was in place and teachers were aware. Over the past 
7 years, she has kept teachers updated on any changes and ensured 
protocols were followed during school trips. Regular appointments with 
the Headmaster and School Nurse, who had experience with Health Care 
Plans, including epilepsy, made me feel calmer. The plan allowed  
me to attend day trips, complete two Duke of Edinburgh’s expeditions,  
and go on a 7-night trip to America. Without this support, 
 traveling would have been much more difficult.”
“I didn’t have an  
individual care plan until  
sixth form, where I received  
support after sharing my  
disabilities. This included having 
someone write my notes out for me, 
my teachers and group one-to-ones 
would break down the assignments 
for me. This support at sixth form 
helped me achieve top grades.  
At University, I applied for disability 
student allowance and worked with 
Disability Support to create a care 
plan. My disability support officer 
assisted with my needs, and I had 
accommodations like recording 
lectures and advanced slides, 
making my studies and  
placements easier.”
Resource
With the right support at school, 
work, or home, children and young 
people can feel empowered.  
Keeping individualised care  
plans up-to-date is key.  
Download our example School 
Individual Health Care Plan 
template here.
Top tips
Children and young people with epilepsy 
need personalised plans tailored to their 
unique needs. This ensures they feel heard 
and supported, boosting their confidence  
for future steps, whether it’s transitioning  
to a new school or embarking on a trip of  
a lifetime.
Care plans should be clear, detailed, and 
comprehensive. They must offer extra help 
and advice, and be universally accessible to 
ensure the right information is easy to find.
If health services could assist parents/carers 
by helping them apply for their children’s 
care plans or directly contacting the 
child’s school to ensure they 
receive a care plan. This 
support could be in the form 
of a letter for the school  
or providing guidance.
Epilepsy12: 2025 Combined organisational and clinical audits: Report for England and Wales Round 4, Cohort 6
12

The Royal College of Paediatrics and Child Health (RCPCH) is a registered charity in England and Wales (1057744) 
and in Scotland (SC038299).
Published by the RCPCH 
July 2025
National Clinical Audit of Seizures and 
Epilepsies for Children and Young People
EPILEPSY12
© 2025 Healthcare Quality Improvement Partnership (HQIP)
Royal College of Paediatrics 
and Child Health 
5-11 Theobalds Road,  
London, WC1X 8SH
Healthcare Quality Improvement 
Partnership (HQIP)  
128 City Road
London, EC1V 2NX
Royal College of 
Paediatrics and Child Health
RCPCH