Epilepsy12 national report 2022; Version 2.0
Source: data.gov.uk (2023-03-28)

Epilepsy12 2022 National organisational and clinical audits - combined report on 2021 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. Round 3 began on 1 April 2017 as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP).

The results are of the organisation of paediatric epilepsy services for children and young people in England and Wales as described at November 2021, and the standard of clinical care provided by services that focuses on patients in ‘cohort 3’. This is children and young people who had a first paediatric assessment for a ‘paroxysmal episode’ (or episodes) between 1 December 2019 and 30 November 2020.

These data should not be interpreted without referring to the combined reports summary and Appendices A&G that contain the reports' full results. which is available at: https://www.rcpch.ac.uk/resources/epilepsy12-national-organisational-audit-clinical-audit-2022

Royal College of 
Paediatrics and Child Health
RCPCH
National Clinical Audit of Seizures and Epilepsies 
for Children and Young People
Epilepsy12 2022 Combined 
organisational and clinical audits:
Report for England and Wales
Round 3, Cohort 3 (2019-21)
Version 2.0: Updated November 2022
Audits 
RCPCH

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Epilepsy12
National Clinical Audit of Seizures and Epilepsies for Children and Young People
Combined organisational and clinical audits: 
Report for England and Wales, Round 3 Cohort 3 (2019-21). 
The Healthcare Quality Improvement Partnership (HQIP) is led by a consortium of the Academy 
of Medical Royal Colleges, the Royal College of Nursing and National Voices. Its aim is to promote 
quality improvement in patient outcomes, and in particular, to increase the impact that clinical 
audit, outcome review programmes and registries have on healthcare quality in England and 
Wales. HQIP holds the contract to commission, manage and develop the National Clinical Audit and 
Patient Outcomes Programme (NCAPOP), comprising around 40 projects covering care provided 
to people with a wide range of medical, surgical and mental health conditions. The programme is 
funded by NHS England, the Welsh Government and, with some individual projects, other devolved 
administrations and crown dependencies. 
www.hqip.org.uk/national-programmes
© 2022 Healthcare Quality Improvement Partnership (HQIP)
Published by RCPCH 2022. 
The Royal College of Paediatrics and Child Health is a registered charity in England and Wales (1057744) and in Scotland (SCO38299).

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Acknowledgements
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 for the audit and working to 
improve paediatric epilepsy services in what have been incredibly challenging circumstances. 
We would like to give additional thanks to the Epilepsy12 designated clinical leads and EEG service 
leads in each Health Board or Trust, and the Organisation of Paediatric Epilepsy Networks in the UK 
(OPEN UK) for their continued support.
Epilepsy12 Clinical lead
Dr Colin Dunkley, Consultant Paediatrician and Epilepsy12 Clinical Lead, Sherwood Forest 
Hospitals NHS Foundation Trust
Epilepsy12 Project Board members
Dr Sarah Aylett, Consultant Paediatric Neurologist, Chair of British Paediatric Epilepsy Group, 
British Paediatric Neurology Association (BPNA)
Prof Nicholas Bishop, Vice President for Science & Research, Royal College of Paediatrics 
and Child Health and Chair of the Epilepsy12 Project Board 
Ann Brown, Clinical Nurse Specialist Paediatric Epilepsies, Royal College of Nursing
Dr Richard Brown, Consultant Paediatrician, Cambridge University Hospitals NHS Foundation 
Trust & Chair of the OPEN UK Working Group
Vivien Dunne, Project Manager, Healthcare Quality Improvement Partnership (HQIP)
Dr Katherine Martin, Consultant Paediatrician, British Academy of Childhood Disability (BACD)
Rosemarie Pardington, Director of Integrated Care, Young Epilepsy 
Angie Pullen, Epilepsy Services Manager, Epilepsy Action
Mirek Skrypak, Associate Director for Quality and Development, Healthcare Quality 
Improvement Partnership (HQIP)

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Epilepsy12 project team
Nicholas Bui, Epilepsy12 Data Analyst, Royal College of Paediatrics and Child Health
Fridah Calvin-Mwingirwa, Epilepsy12 Data Analyst, Royal College of Paediatrics 
and Child Health 
Calvin Down, Head of Audits, Royal College of Paediatrics and Child Health 
Simon Duncan, Audit Administrator, Royal College of Paediatrics and Child Health 
Tom Keiller, Audit Administrator, Royal College of Paediatrics and Child Health 
Niky Raja, Epilepsy12 Co-ordinator, Royal College of Paediatrics and Child Health
Helen Stacey, Epilepsy12 Manager, Royal College of Paediatrics and Child Health 
Epilepsy12 Methodology and Dataset Group members
Dr Sophie Bennett, Clinical Psychologist, Great Ormond Street Hospital (GOSH)
Dr Richard Brown, Consultant Paediatrician, Cambridge University Hospitals NHS Foundation 
Trust & Chair of the OPEN UK Working Group
Jill Conium, Children’s Epilepsy Specialist Nurse, East and North Hertfordshire NHS Trust 
Dr Trupti Dhorajiwala, Consultant Paediatrician, Tameside and Glossop Integrated Care NHS 
Foundation Trust 
Diane Flower, Lead Children’s Epilepsy Specialist Nurse, University Hospitals Bristol NHS 
Foundation Trust
Robert Grant, Chartered Statistician at BayesCamp & statistical advisor to Epilepsy12
Dr Ramesh Kumar, Consultant Paediatrician, South Tees Hospitals NHS Foundation Trust
Dr Jeya Natarajan, Consultant Paediatrician, Cym Taf Morgannwg University Health Board 
Millie Power, Patient & Nurse representative
Dr Colin Reilly, Educational Psychologist
Dr Robert Robinson, Consultant Paediatric Neurologist, GOSH 
Dr Sara L. Shavel-Jessop, Clinical Paediatric Neuropsychologist, GOSH
Lisa Thurston, Parent and Young Epilepsy Representative

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Special thanks
Melanie David-Feveck, EQIP Project Manager, Royal College of Paediatrics and Child Health
Emma Hosking, Engagement & Participation Youth Worker, Royal College of Paediatrics 
and Child Health
Emma Sparrow, Head of Children, Young People & Engagement, Royal College of Paediatrics 
and Child Health
Epilepsy12 Youth Advocates
EQIP Faculty & Advisory groups
Organisation of Paediatric Epilepsy Networks in the UK (OPEN UK) Working Group

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Contents
Foreword.......................................................................................................................................................................................................................8
Executive summary............................................................................................................................................................................................9
1. Introduction..........................................................................................................................................................................................................13
Clinical audit of ‘cohort 3’...................................................................................................................................................................14
Organisational audit of November 2021................................................................................................................................14
Quality improvement............................................................................................................................................................................15
2. Key findings and recommendations............................................................................................................................................16
Epilepsy12 Performance Indicators............................................................................................................................................17
Rescue medication usage variation..........................................................................................................................................21
Sodium valproate in girls and young women...................................................................................................................23
Care planning..............................................................................................................................................................................................25
Waiting times..............................................................................................................................................................................................28
Mental health and psychological support...........................................................................................................................31 
Transition to adult services...............................................................................................................................................................34
Tertiary care and surgery....................................................................................................................................................................37
3. Organisation of Paediatric Epilepsy Networks in the UK (OPEN UK) ...........................................................39
OPEN UK Working Group 2021-22..............................................................................................................................................39
OPEN UK and Epilepsy12 user survey......................................................................................................................................40
4. Epilepsy12 Youth Advocates improvement activities...................................................................................................42
5. Epilepsy Quality Improvement Programme (EQIP) 2021-22....................................................................................45
Lessons learnt..............................................................................................................................................................................................50
6. Quality improvement in University Hospitals of Derby & Burton NHS Trust (UHDB).....................52
One stop Epilepsy-EEG service for Children’s Epilepsy Clinics............................................................................53
Epilepsy service review at Royal Derby Hospital.............................................................................................................54
Improving patient information about the epilepsy service...................................................................................55

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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The full audit results and additional information are listed below. 
These appendices are available to download from rcpch.ac.uk/epilepsy12.
Appendix A: Epilepsy12 Round 3, 2021 Organisational audit 
Full results: 
•	
Participation 
•	
Workforce
•	
Clinic configuration 
•	
Tertiary provision 
•	
Investigations 
•	
Service contact 
•	
Transition
•	
Mental health 
•	
Neurodevelopmental support 
•	
Care planning
•	
Patient database or registry
•	
Findings by OPEN UK regional networks
Appendix B: Epilepsy12 Round 3, Cohort 3 Clinical audit 
Full results: 
•	
Participation and case ascertainment 
•	
Description of cohort
•	
Diagnostic status
•	
Initial referral and examination 
•	
Description of episodes 
•	
Convulsive seizures
•	
Neurodisability or 
neurodevelopmental problems 
•	
Mental health conditions
•	
Investigations 
•	
Treatment 
•	
Care planning
•	
Professionals and services involved in care 
•	
Overview of performance indicators
Appendix C 
•	
Glossary of terms and abbreviations	
•	
Useful resources	

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Foreword
Hi from the Epilepsy12 Youth Advocates! 
We have been working on the audit for the last 3 years and were really pleased to see 
the positive changes that the audit has made to epilepsy care over the years. 
One thing we are really proud of is the difference over the years in being able to see an epilepsy 
specialist nurse. Having access to their support really can change your life and make such a big 
difference to how we feel as young people with epilepsy. It’s now really important that we get 
this figure up as high as possible in paediatrics, but that we make sure that there is always an 
Epilepsy Specialist Nurse waiting for you in adult services so that you have their support as you 
go forward as a young adult. 
We think there is still more to do when it comes to support for worries and anxieties linked 
to your epilepsy, including mental health support, as well as with school care plans. We were 
all quite surprised to see that the numbers of children and young people getting support with 
their mental health in their first year is so low – this could be we think because their epilepsy 
is the first focus, or that it takes longer now to be referred due the pandemic. 
We would like there to be more of a focus on emotional wellbeing from the start when you
have your first seizure, with questions on the audit helping people to keep track of the best 
way to provide this help like through a youth worker, a specialist play worker or other early 
help services. 
When it comes to school individual healthcare plans, we really want to make sure that this 
figure keeps getting higher each year but in much bigger steps. Only 36% of children and young 
people in their first year had a school care plan recorded by their epilepsy team.
In your first year of having epilepsy you could be feeling scared, worried, unsure and really want 
to have all the people around you, including in school, feeling confident that they have the right 
information to be able to support you, so that you and your family feel reassured. We need to do 
more work to support schools, doctors, patients and families so that the school care plan is in 
place – there is still a long way to go. 
We’ve loved our time working with the Epilepsy12 Audit and hope that you enjoy reading our 
update in our chapter! Thanks for all you are doing with patients and their families to improve 
their lives and epilepsy experiences.

 The Epilepsy12 Youth Advocates



Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Executive summary
Epilepsy12 is the national clinical audit of seizures and epilepsies in children 
and young people for England and Wales. 
The audit is commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part 
of the National Clinical Audit and Patient Outcomes Programme (NCAPOP) and includes NHS 
services in England and Wales. 
This report focuses on ‘cohort 3’: children and young people who had a first paediatric assessment 
for a suspected seizure between 1 December 2019 and 30 November 2020. The audit then follows 
the patients for 12 months of subsequent care. There are 12 ‘Performance Indicator’ measures for 
the audit which are derived from national guidelines and recommendations; results from the last 
three cohorts are shown below.
32%
70%
62%
40%
100%
97%
69%
68%
88%
62%
30%
59%
69%
88%
32%
70%
65%
48%
71%
98%
71%
65%
91%
61%
23%
52%
73%
87%
36%
75%
70%
42%
40%
99%
72%
69%
93%
63%
36%
59%
76%
88%
0%
20%
40%
60%
80%
100%
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:
Epilepsy12 Performance indicators in England and Wales in Round 3 cohorts 1-3
Round 3 Cohort 3
Round 3 Cohort 1
Round 3 Cohort 2
Figure 1: Epilepsy12 Performance indicators in England and Wales in Round 3 cohorts 1-3.
The whiskers on the chart represent 95% confidence intervals. If these whiskers overlap, the difference in the achievement of the indicator 
is not statistically significant.

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Key messages
First EEG waiting times 
There was an increase in children and 
young people waiting more than 16 weeks 
for an initial Electro-encephalogram (EEG) 
in cohort 3 (10%, 191/1974). NICE Quality 
Standard 27 (statement 2) states that children 
and young people having initial investigations 
for epilepsy undergo the tests within 4 weeks 
of being requested.
First EEG waiting times
53% (1117/2106) of children and young 
people diagnosed with epilepsy, obtained 
their EEG within four weeks of request.
EEG
request
made
53%
Transition
There was evidence of increased joint-
working to support young people to transition 
to adult services but the available support 
for patients varied considerably between 
services: 65% (75/115) of Health Boards and 
Trusts reported having an epilepsy outpatient 
service where there is a presence of both 
adult and paediatric professionals. 
Transition
63% (75/119) of Trusts and Health boards 
had an adult epilepsy specialist nurse 
routinely involved in the transition of 
young people to adult services.
ADULT
EPILEPSY 
SERVICE
63%
ADULT
ESN 
Epilepsy
Specialist
Nurse
Care planning 
There was evidence of wide-spread use 
of comprehensive, individual care planning 
for children with epilepsy. Most care plans 
were agreed and updated. The proportion 
of plans which contained all the required 
elements also increased to 75% (1487/1974) 
in cohort 3. 
Care planning key contents
65% (1379/2106) of children and young 
people diagnosed with epilepsy, had 
evidence of an updated and agreed 
comprehensive care plan.
65%
HEALTHCARE 
PLAN
 
HEALTHCARE 
PLAN
Care planning agreement
70% (1379/1974) of children and young 
people diagnosed with epilepsy, had 
evidence of an updated and agreed 
comprehensive care plan. 
70%
 
 
 
ADULT
EPILEPSY 
SERVICE
ADULT
ESN 
Epilepsy
Specialist
Nurse
Transition
65% (75/115) of Trusts and Health Boards 
had an adult epilepsy specialist nurse 
routinely involved in the transition of 
young people to adult services. 
65%
 
EEG
request
made
First EEG waiting times
54% (1058/1974) of children and young 
people diagnosed with epilepsy, obtained 
their EEG within four weeks of request.
54%

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Children’s Epilepsy Surgical Service 
(CESS)
Some children and young people with epilepsy 
may be missing out on, or having delayed 
referral to, epilepsy surgery assessments. 
36% (49/135) of children and young people 
diagnosed with epilepsy who met surgical 
referral criteria had a referral for surgical 
evaluation during their first year of care. 
Mental health care
Research suggests there is a higher incidence 
of mental health problems among children 
and young people with long term conditions, 
but very few of the epilepsy patients had 
an identified mental health condition 
(5%, 53/1124). Few epilepsy services could 
provide co-located mental health provision 
as recommended within the Best Practice 
Criteria (18%, 12/115). 
Mental health care
5% (68/1358) of children and young 
people, between the age of 5-15 years 
and diagnosed with epilepsy, had an 
identified mental health condition.
5%
Children’s Epilepsy
Surgical Service (CESS)
23% (25/107) of children and young 
people diagnosed with epilepsy who 
met surgical referral criteria, had a 
referral for surgical evaluation.
CESS Referral Criteria
23%
Recommendations for improvement
EEG and epilepsy services continued to submit their data to 
Epilepsy12 despite significant challenges of the pandemic. We want 
to recognise the dedication to children with epilepsy that this shows. 
The recommendations made in the report focus on areas for 
improvement, however the overall consistency of the results with 
those from pre-pandemic cohorts is a testament to how hard teams 
and individuals have worked to maintain services and care. 
 
 
 
 
Mental health care
5%
5% (53/1124) of children and young 
people between the age of 5-15 years and 
diagnosed with epilepsy in cohort 3, had 
an identiﬁed mental health condition. 
CESS Referral Criteria
Children’s Epilepsy 
Surgical Service (CESS)
36% (49/135) of children and young 
people diagnosed with epilepsy who 
met surgical referral criteria, had a 
referral for surgical evaluation.
36%

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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There were four new recommendations made:
Recommendation 1 
Epilepsy clinical teams, OPEN UK, the Welsh Government and the 
NHS England Regional teams should review the Epilepsy 12 data, 
and the criteria and implementation of, prescription of rescue 
medications for prolonged convulsive seizures in children and young people.
Recommendation 2 
All females of child-bearing potential prescribed Sodium Valproate should have 
ongoing documentation regarding their status within the valproate Prevent 
Programme.
Recommendation 3 
OPEN UK regions, and Health Boards and Trusts should ensure there is a 
process in place to ensure discussion of Sudden Unexpected Death in Epilepsy 
(SUDEP), and care planning for risks and participation, is achieved for children 
and young people with epilepsy.
Recommendation 4 
All Health Board and Trusts, OPEN UK, and ICSs should review the waiting times 
for standard EEG in their services; ensuring sufficient capacity and pathways in 
place to achieve EEG within four weeks of referral.
Several of the previous recommendations made by Epilepsy12 remain relevant and require 
improved implementation. These recommendations are highlighted by theme in our ‘Key 
findings and recommendations’ section. This section also includes a summary of the audit 
evidence underpinning both the new and repeated recommendations; full results are found 
in appendices A and B.
Further sections of the report include different quality improvement activities taking place within 
the audit, by children and young people, and within NHS epilepsy services. 
1
2
3
4

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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1. Introduction
Epilepsy12 was established in 2009 and has the continued 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. 
The audit 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).
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 patient data. This information is used by the audit to 
highlight areas where services are doing well, and also identify areas in which they need to improve.
In 2022, a further contract was awarded to the RCPCH to deliver the audit up to 31 March 2025. 
All current and previous publications from Epilepsy12 are available at www.rcpch.ac.uk/epilepsy12 
There are three main elements to Epilepsy12 which are included 
in this report: 
1.	 A clinical audit of children and young people newly diagnosed with epilepsy in the 
‘cohort 3’ patient group.
2.	 An organisational audit of epilepsy services as at November 2021.
3.	 Quality improvement activities and projects related to the audit. 

The measures and analysis used in Epilepsy12 audits are directed by our Epilepsy12 Methodology 
and Dataset Group, which brings together a range of clinical, patient and parent, and statistical 
experts. The measures were developed to align to national standards and guidelines, including:
•	
Epilepsies: diagnosis and management (2012) NICE guideline CG137.
•	
Epilepsy in children and young people (2013) NICE Quality Standard 27.
Full details of the Epilepsy12 Round 3 datasets can be viewed on the Epilepsy12 website

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Clinical audit of ‘cohort 3’
The clinical audit focuses on care provided to patients with a new diagnosis of epilepsy. 
Clinical audit data entry is prospective, with eligible patients grouped into cohorts based on 
when they are first assessed by the paediatric service. During 2020 and 2021 the guidance from 
NHS England was that clinical services should protect and prioritise their clinical activity, and 
services could pause other activities (including the mandatory submission of audit data) when 
necessary. The pandemic has, by necessity, limited the audit data available. 
This report focuses on ‘cohort 3’ which is the third group of patients in Round 3 of Epilepsy12. 
Cohort 3 includes children and young people who had a first paediatric assessment for 
a ‘paroxysmal episode’ (or episodes) between 1 December 2019 and 30 November 2020. 
Paroxysmal episodes are any epileptic seizures, non-epileptic seizures, or seizures of 
uncertain origin.
Epilepsy12 follows patients for twelve months of care following their first assessment; we refer 
to this as the ‘first year of care’. Depending on when they had entered the audit, children and 
young people in cohort 3 completed their first year of care between 1 December 2020 and 30 
November 2021. 
There were 147 registered Health Boards and Trusts for cohort 3 of Epilepsy12. The number 
of participating Health Boards and Trusts has changed over time due to changes in the 
configuration of the Health Boards and Trusts. Of these, 105 Health Boards and Trusts were 
able to submit a full first year of care clinical record for one or more children and young people 
in cohort 3. First year of care records were submitted for 5501 children and young people in 
cohort 3. 
Organisational audit – November 2021 
The Epilepsy12 audit of the organisation of paediatric epilepsy services in England and Wales 
focuses on services and workforce at Trust and Health Board level, describing a designated 
point in time. This report presents organisational data describing the services as they were in 
November 2021. At this time the NHS was dealing with a significant surge in COVID-19 cases 
and hospitalisations in both England and Wales. 
115 Health Boards and Trusts were able to submit and lock their November 2021 organisational 
audit data for inclusion in this report. The data were provided to Epilepsy12 between November 
2021 and February 2022. 

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Quality improvement 
The audit supports quality improvement activities in a number of different ways: 
Local:  Supporting planning & quality improvement
•	
The Epilepsy Quality Improvement Programme (EQIP) 17 NHS Trusts joined 
2 waves of 2021/22 EQIP. The teams implemented improvement projects in 
their Trust or ICS services. 
•	
The Epilepsy12/OPEN UK annual stakeholder meeting brought together epilepsy 
teams to sharing learning and case studies on different improvement themes. 
•	
Each Trust/Health Board receives local results with regional and national bench-marks. 
Results are used to develop local strategy, provide an evidence base for improvement 
projects, and to highlight successes and identify ongoing needs.
•	
The Epilepsy12 Youth Advocates published a self-assessment tool developed with 
services to improve support for patients’ worries and anxieties. 
Public:  Involving patients & supporting the public
•	
Children and young people are actively involved: their views influence 
the areas included the audit, and improvement activities led by the ‘Youth 
Advocates’ (epilepsy experienced children, young people, families and two 
epilepsy specialist nurses).
•	
A set of ‘clinic posters’ were developed which are a one-page, easy to access 
information of Health Board or Trust Epilepsy12 results. These have been designed 
to be displayed in clinics or shared digitally with patients/families.
•	
Publication of a Patient and Parent/Carer guide to the 2021 Epilepsy12 Annual Report.
National:  Policy development & system management
•	
Epilepsy12 national reports set out recommendations developed in 
conjunction with system stakeholders.
•	
NHS England Epilepsy Oversight Group will use evidence from the audit 
to support policy and improvements in their 4 priority areas of epilepsy care.
•	
Epilepsy12 evidence was submitted to NICE as part of the consultation exercise 
for the update of epilepsy clinical guidelines.
•	
An Epilepsy12 pilot project is working to improve interoperability between the audit 
and NHS systems, improving data collection, reporting & use of this intelligence. 
•	
Epilepsy12 host the OPEN UK Working Group, and sits on the RCPCH Epilepsy 
National Programme Board, bringing stakeholders together to support improvement 
in epilepsy care. 

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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2. Key findings and recommendations
In previous rounds of Epilepsy12 there has been considerable variation 
in the ability of different Health Boards and Trusts in England and Wales 
to provide adequate workforce time and resources to participate in this 
national audit. 
This has become even more challenging for services to manage since 2020 due to the impact 
of the COVID-19 pandemic on the NHS. 
EEG and epilepsy services have continued to submit their data to Epilepsy12 
despite significant clinical demands, staff redeployment, and sickness 
absences. We want to recognise the dedication to children with epilepsy 
that this shows. 
The recommendations in this section focus on areas for improvement, however the overall 
consistency of the results with those from pre-pandemic cohorts is a testament to how hard 
teams and individuals have worked to maintain services and care.
Health Boards and Trusts can use audit data for benchmarking practices to identify areas to 
focus on in service improvements, share best practice and improve care outcomes. It is essential 
that Health Board and Trust managers support and resource their paediatric epilepsy services to 
improve data completeness, ensuring an accurate reflection of their standards of care. 
The full audit results highlight several areas of strength, including that children and young people 
continued to access appropriate investigations for their epilepsy. During their first year of care 98% 
(1931/1974) of children with epilepsy received an EEG and an MRI was achieved for 72% (499/695)  
of the patients meeting the defined indications for this measure.
The proportion of patients with a comprehensive care plan also improved: 75% (1458/1918) had a plan 
which included every core element of content. Elements of the content, such as prolonged seizure 
plans, discussion of first aid, and service contact details, were provided very consistently. These were 
recorded for 92% (406/439), 87% (1723/1974), and 93% (1827/1974) of patients respectively.
The full results from the clinical and organisational data are available in appendices A and B. 
This includes the results of analysis for each Epilepsy12 audit measure, and analysis by country 
and regional epilepsy network areas. Trust and Health Board level results are also provided on 
our website, as data tables for both clinical and organisational audits.

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Epilepsy12 Performance Indicators
Within the clinical audit, there are 12 ‘Performance Indicator’ measures which are derived from 
national guidelines and recommendations.
2. Epilepsy specialist nurse (ESNs)
76% (1505/1974) of children and 
young people diagnosed with epilepsy, 
had input from an ESN in their first year 
of care. An increase compared to the 
previous Round 3 cohorts.
1. Paediatrician with 
expertise in epilepsies 
In Round 3, cohort 3, 88% (1730/1974) 
of children and young people diagnosed 
with epilepsy, had input from a 
paediatrician with expertise in epilepsies 
in their first year of care. This was slightly 
higher than cohort 2.
88%
3. Tertiary services 
59% (281/480) of patients meeting the 
criteria received tertiary input into their 
epilepsy care; an increase compared to cohort 
2. However, few of the patients (36% 49/135) 
that met the surgery criteria were referred to 
the epilepsy surgery service for assessment 
within the first year of care.
4. First paediatric assessment 
The proportion of children and young 
people diagnosed with epilepsy who had 
an MRI, remained stable across all three 
cohorts. In Cohort 3, MRI was achieved for 
72% (499/695) of the patients meeting the 
defined indications for an MRI. 

76%
63%
59%
88%
76%
59%

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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5. Seizure formulation
This was consistently achieved with 93% 
(1780/1974) of children and young people 
diagnosed with epilepsy for whom an 
International League Against Epilepsy 
(ILAE) seizure classification was recorded 
in their first year of care.
7. Magnetic resonance 
imaging (MRI)
The proportion of children and young 
people diagnosed with epilepsy who had 
an MRI, remained stable across all three 
cohorts. In Cohort 3, MRI was achieved for 
72% (499/695) of the patients meeting the 
defined indications for an MRI. 
6. Electrocardiogram (ECG)
The proportion of children and young 
people with epilepsy and convulsive 
seizures that obtained a 12 lead ECG was 
69% (840/1218); which was consistent 
with pre-pandemic rates in cohort 1 
(68%, 474/701). 
8. Accuracy of diagnosis
In Round 3, cohort 3, 99% (1953/1980) 
of children and young people initially 
diagnosed with epilepsy retained the 
diagnosis at one year of care. 
This proportion has been increasing 
in every audit round.
93%
72%
69%
99%

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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9. Sodium valproate
Few girls and young women were 
prescribed sodium valproate compared 
to boys. Although a very small number 
were aged over nine, of these 40% had a 
record of discussion of the associated risks 
during pregnancy and it is important this 
is achieved consistently. 
11. Comprehensive care planning
There was an increase in patients 
receiving all core elements of care 
planning; 75% (1458/1918) of children 
and young people had evidence of all 
elements completed, compared to 70% 
in cohorts 1 and 2. 
10. Care planning agreement
70% (1379/1974) of children and young 
people diagnosed with epilepsy, had 
evidence of a comprehensive care plan 
that had been agreed between the 
patient, their family and care providers, 
and was updated where necessary.
12. A school individual 
healthcare plan
For 36% (499/1381) of children and young 
people diagnosed with epilepsy (aged five 
years and above), their epilepsy service 
had evidence of a school individual 
healthcare plan being in place. 
40%
75%
70%
36%

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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32%
70%
62%
40%
100%
97%
69%
68%
88%
62%
30%
59%
69%
88%
32%
70%
65%
48%
71%
98%
71%
65%
91%
61%
23%
52%
73%
87%
36%
75%
70%
42%
40%
99%
72%
69%
93%
63%
36%
59%
76%
88%
0%
20%
40%
60%
80%
100%
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:
Epilepsy12 Performance indicators in England and Wales in Round 3 cohorts 1-3
Round 3 Cohort 3
Round 3 Cohort 1
Round 3 Cohort 2
Figure 2: Epilepsy12 Performance indicators in England and Wales in Round 3 cohorts 1-3.
The whiskers on the chart represent 95% confidence intervals. If these whiskers overlap, the difference in the achievement of the indicator 
is not statistically significant.

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Rescue medication usage variation
Recommendation 1 
Epilepsy clinical teams, OPEN UK, the 
Welsh Government and the NHS England 
Regional teams should review the Epilepsy 
12 data, and the criteria and implementation 
of, prescription of rescue medications for 
prolonged convulsive seizures in children and 
young people. 
Rescue medication
22% (439/1974) of the children 
and young people diagnosed 
with epilepsy, had rescue 
medication prescribed.
22%
Buccal 
Midazolam
Key findings
The proportion of patients prescribed rescue medication to help manage 
their epilepsy was relatively consistent across cohorts 1 to 3, at around a fifth 
of children and young people with epilepsy. However, there is considerable regional 
and local variation in the provision of rescue medication, which requires further 
consideration. 
Analysis at a regional level indicates a wide variation in prescribing 
practices, with rescue medication prescribed for a range of between 7% 
and 45% of children and young people with epilepsy across the regional 
networks in England and Wales.
22% (439/1974) of the children and young people diagnosed with epilepsy, 
had rescue medication prescribed in England and Wales in Cohort 3. This 
was relatively consistent across cohorts; with 22% for cohort 2 and 20% 
for cohort 1.
22%
92% (406/431) of children and young people diagnosed with epilepsy 
and on rescue medication, had a parental prolonged seizure care plan. 
This had increased from 89% of cohort 1 and 90% of cohort 2.
92%

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Figure 3: Patients prescribed rescue medication, by OPEN UK region (cohort 3 only).
0%
10%
20%
30%
40%
50%
60%
Yorkshire Paediatric Epilepsy Network
Wessex Paediatric Neurosciences Network
Trent Epilepsy Network
South West Thames Paediatric Epilepsy Group
South West Interest Group Paediatric Epilepsy
South Wales Epilepsy Forum
South East Thames Paediatric Epilepsy Group
Paediatric Epilepsy Network for the North East and Cumbria
Oxford Region Epilepsy Interest Group
North West Children and Young People's Epilepsy Interest Group
North Thames Paediatric Epilepsy Network
Mersey and North Wales Network 'Epilepsy in Childhood' Interest Group
Eastern Paediatric Epilepsy Network
Children's Epilepsy Workstream in Trent
Birmingham Regional Paediatric Neurology Forum
Wales
England
England and Wales
22%
22%
14%
7%
12%
27%
13%
45%
15%
18%
29%
21%
15%
22%
20%
17%
24%
22%
% of children and young people diagnosed with epilepsy and had rescue medication prescribed
Cohort 3
 
National guidelines and standards
•	
NICE guidelines Quality Standard 27 (statement 6) state that children and young people 
with a history of prolonged or repeated seizures have an agreed written emergency care plan.
Epilepsy12 audit measure
•	
Percentage of the children and young people diagnosed with epilepsy, prescribed 
rescue medication.
Target audiences 
•	
Epilepsy clinical teams, OPEN UK, the Welsh Government and the NHS England 
Regional teams.

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Sodium valproate in girls and young women
Recommendation 2 
All females of child-bearing potential 
prescribed Sodium Valproate should have 
ongoing documentation regarding their status 
within the valproate Prevent Programme.
ALL THESE SECTIONS
HAVE AN IMAGE APART 
FROM THIS ONE? 
Key findings
All females able to have children must be enrolled in a pregnancy prevention 
programme (PPP) to be prescribed sodium valproate but there were a small 
number of patients in Cohort 3 where this was not recorded. 
42% (50/120) of females prescribed Sodium Valproate had evidence 
of discussion of risk regarding the risks of birth defects and/or 
neurodevelopmental outcomes.
There was a clear gender difference in sodium valproate prescribing: 
21% (120/584) of children and young people receiving it were female. 
This proportion was similar when including only the females aged 
9 and above, where 40% had evidence of discussion of the risks 
recorded. This was lower than previous cohorts (71% of cohort 2 and 
>95% of cohort 1). For patient privacy, we do not report the exact small 
numbers of patients in this group.
21%
42%
40%
Sodium Valproate

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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National guidelines and standards
•	
Medicines and Healthcare products Regulatory Agency (MHRA) guidance requires 
that valproate must no longer be used in any woman or girl able to have children, 
unless she has a pregnancy prevention programme in place.
Epilepsy12 indicators
•	
Performance indicator 9a: Percentage of females aged 9 and above currently on 
valproate treatment with evidence of discussion of foetal risk.
•	
Performance indicator 9b: Percentage of all females currently on valproate treatment 
with evidence of discussion of foetal risk.
Target audiences 
•	
Epilepsy clinical teams, the Welsh Government and the NHS England Regional teams.

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Care planning
Recommendation 3 
OPEN UK regions, and Health Boards and Trusts should ensure there is a process in place 
to ensure discussion of Sudden Unexpected Death in Epilepsy (SUDEP), and care planning 
for risks and participation, is achieved for children and young people with epilepsy.
Recommendations repeated from 2021: 
All Health Board and Trust managers and epilepsy clinical teams should implement 
standardised approaches to epilepsy care planning content provision to ensure that essential 
elements of care are always provided for all children and young people with epilepsy and 
these are reviewed on an ongoing basis. 
Health Board and Trust managers, epilepsy clinical teams, school head teachers, and school 
nurses should agree processes to facilitate appropriate, up-to-date health care planning 
within education and two-way information sharing. 
Care planning key contents
65% (1379/2106) of children and young 
people diagnosed with epilepsy, had 
evidence of an updated and agreed 
comprehensive care plan.
65%
HEALTHCARE 
PLAN
Epilepsy Specialist Nurses
78% xx-xxxx-xxxx) of children and young 
people diagnosed with epilepsy had input 
from an Epilepsy Specialist Nurse.
Epilepsy
Specialist
Nurse
78%
Key findings
There was evidence of wide-spread use of comprehensive, individual care 
planning for children with epilepsy. Core elements of content were present in 
most care plans and the proportion of care plans which contained all the required 
elements increased in cohort 3. Epilepsy teams rarely had record of a school individual 
healthcare plan for the children and young people whose care they manage. 
 
HEALTHCARE 
PLAN
Care planning agreement
70% (1379/1974) of children and young 
people diagnosed with epilepsy, had 
evidence of an updated and agreed 
comprehensive care plan. 
70%
 
Epilepsy
Specialist
Nurse
Epilepsy Specialist Nurses
80% (1579/1974) of children and young 
people diagnosed with epilepsy had an
 input from an Epilepsy Specialist 
Nurse at any point.
80%

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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70% (1379/1974) of children and young people diagnosed with epilepsy, 
had evidence of a care plan that had been both updated as needed and 
agreed between the child, their family and their healthcare provider. 
This had increased from 65% (1378/2106) in cohort 2.
80% (1579/1974) of children and young people diagnosed with epilepsy 
had input from an ESN at any point. This is similar to cohort 2 (78%, 
xx-xxxx-xxxx), and an increase compared to cohort 1 (72%, 798/1112) and the 
two earlier rounds of the audit in 2009 and 2014. 
One of the care planning contents elements is for planning and discussion 
of ‘general participation and risks’. This had been achieved in an increasing 
proportion of care plans over the three cohorts from 80% (890/1112) in 
cohort 1 to 85% xx-xxxx-xxxx) in cohort 3; but it continued to be achieved 
less than other elements of content. 
75% (1487/1974) of children and young people with epilepsy had 
a comprehensive care plan which contained all the core elements 
of content. This had increased from 70% (1464/2106) in cohort 2. 
89% (102/115) of Health Boards and Trusts employed some ESN provision 
within their paediatric service. In most services ESNs facilitate the care 
planning process and updates, (in 85%, 98/115, of the Health Boards 
and Trusts).
36% (499/1381) of school-aged children and young people with epilepsy 
were identified as having a school Individual Healthcare Plan. This had 
been similar in cohort 2 (32%, 455/1402).
53% (1049/1974) of children and young people diagnosed with epilepsy, 
had evidence of information on SUDEP in England and Wales in Cohort 3.
36%
75%
70%
53%
89%
ESNs are also an important link to schools in many epilepsy services; 
in 85% (98/115) of Trusts and Health Boards the ESNs support school 
meetings and school rescue medication training (77%, 89/115). 
85%
80%

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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National guidelines and standards
•	
NICE Quality Standard 27 (statement 4) states that children and young people with epilepsy 
have an agreed and comprehensive care plan.
•	
NICE Quality Standard 27 (statement 5) states that children and young people with epilepsy 
are seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
Epilepsy12 indicators
•	
Performance indicator 10: Percentage of children and young people diagnosed with 
epilepsy where there is evidence of a comprehensive care plan that is agreed between 
the person, their family and/or carers, and primary and secondary care providers, and the 
care plan has been updated where necessary.
•	
Performance indicator 11: Percentage of children diagnosed with epilepsy with documented 
evidence of communication regarding relevant core elements of care planning.
•	
Performance indicator 12: Percentage of children and young people with epilepsy aged 5 
years and above with evidence of a school individual healthcare plan by 1 year after first 
paediatric assessment.
Target audiences 
•	
Health Board and Trust managers, commissioning organisations, epilepsy clinical teams, 
ESNs, school head teachers, and school nurses.
Quality improvement at East Sussex Healthcare NHS Trust
The clinical team at the Trust are aiming to improve the communication with, 
and information given to, patients and their families. 
The team has implemented the use of video in their diagnostic process. This has been 
through use of the ‘vCreate Neuro’ platform which allows secure communication and 
file sharing between clinicians and the children and young people (or their parents and 
guardians). The service has also worked to improve the verbal and written information given 
to patients about SUDEP, increased the multi-disciplinary elements of their epilepsy clinics, 
and have recently initiated mental health screening tools within clinics.
This has helped to: 
•	
Improve the accuracy of diagnoses with sharing of video between the family 
and epilepsy service.
•	
Increase the input from ESNs into children’s and young people’s care.
•	
Improved patient information and awareness of SUDEP. 

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Waiting times
Recommendation 4 
All Health Board and Trusts, OPEN UK, and ICSs should review the waiting times for standard 
EEG in their services; ensuring sufficient capacity and pathways in place to achieve EEG within 
four weeks of referral.
Recommendations repeated from 2021: 
Commissioning organisations should ensure that there is regional capacity to provide timely 
access to necessary epilepsy investigations (such as EEG, ECG, MRI and CT), so that children 
and young people are not disadvantaged by the variation in availability of diagnostic services 
between Health Boards and Trusts.
All Health Board and Trust managers should employ sufficient Epilepsy Specialist Nurses and 
consultant paediatricians “with expertise” in epilepsy to ensure all children and young people with 
epilepsy can reliably receive responsive, individualised, specialist input into their diagnosis and care.
Paediatrician with expertise
87% (1830/2106) of children and young people 
diagnosed with epilepsy had input from a 
Paediatrician with Expertise.
87%
LEAD
First EEG waiting times
53% (1117/2106) of children and young 
people diagnosed with epilepsy, obtained 
their EEG within four weeks of request.
EEG
request
made
53%
Key findings
The proportion of patients receiving a timely EEG was consistent with previous 
cohorts (national guidance states this should be within 4 weeks of referral). However 
there was a concerning increase in children waiting over 16 weeks for a first EEG. 
54% (1058/1974) of children and young people diagnosed with epilepsy, 
obtained an EEG within four weeks of request. This had been similar in 
cohort 2 (53%, 1117/2106).
54%
 
EEG
request
made
First EEG waiting times
54% (1058/1974) of children and young 
people diagnosed with epilepsy, obtained 
their EEG within four weeks of request.
54%
 
LEAD
Paediatrician with expertise
85% xx-xxxx-xxxx) of children and young 
people diagnosed with epilepsy had input from 
a paediatrician with expertise at any point. 
85%

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
29
There was an increase in children and young people waiting more 
than 16 weeks for an EEG in cohort 3 10% (191/1974) compared to 
cohort 2 5% (95/2106.) 
There is considerable variation in available services at Trust and Health 
Board level: 64% (74/115) (2020: 61%, 72/119) of Trusts and Health Boards 
could provide a standard EEG within their location; 95% (109/115)(2020: 
96%, 114/119) could provide a 12-lead ECG; 95% (109/115) (2020: 94%, 112/119) 
an ‘awake’ MRI or 66% (76/115) (2020: 63%, 75/119) ‘with sedation’. 
85% xx-xxxx-xxxx) children and young people diagnosed with epilepsy 
had input from a paediatrician with expertise at any point. 
85%
23% of (457/1974) children and young people diagnosed with epilepsy 
were seen by a paediatrician with expertise in epilepsy within 2 weeks of 
first referral. This had increased compared to previous cohorts: from 16% 
(172/1112) in cohort 1 and from 19% (392/2106) in cohort 2.
23%
National guidelines and standards
•	
NICE Quality Standard 27 (statement 2) states that children and young people having initial 
investigations for epilepsy undergo the tests within 4 weeks of being requested.
•	
NICE Quality Standard 27 (Statement 3) states that children and young people who meet 
the criteria for neuroimaging for epilepsy should have magnetic resonance imaging (MRI).
•	
Current British Paediatric Neurology Association (BPNA) PET (Paediatric Epilepsy Training) 
teaching curriculum, states that all children with a convulsive seizure should have a 12-lead ECG.
•	
NICE Quality Standard 27 (statement 1) states that children and young people presenting 
with a suspected seizure are seen by a specialist in the diagnosis and management of the 
epilepsies within 2 weeks of presentation.
Epilepsy12 indicators
•	
Performance indicator 1: Percentage of children and young people with epilepsy, with input 
by a ‘consultant paediatrician with expertise in epilepsies’ within the first year of care.
•	
Performance indicator 6: Percentage of children and young people with convulsive seizures 
and epilepsy, with an ECG by the first year. 
•	
Performance indicator 7: Percentage of children and young people with defined indications 
for an MRI, who had MRI by first year.

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Quality improvement at St. George’s University Hospitals NHS Trust
The clinical team at the Trust are aiming to decrease their referral waiting times 
for a first seizure clinic; improve seizure management outcomes for patients; 
and reduce patient distress. They began the process by reviewing which factors 
were leading to long waiting times, and identifying possible strategies for elements 
they could change. 
They then put in place a number of changes, including setting up a shared team email 
address, developing a new standard referral form, and defining a clear system to process 
the referrals. 
The outcomes so far have been:
•	
Improved communication between different teams.
•	
Improved understanding of the referral process.
•	
Better awareness of the epilepsy team’s workload. 
•	
Tracking has shown reduced waiting times (although the change was not 
statistically significant). 
Target audiences 
•	
Health Board and Trust managers, EEG teams, and commissioning organisations.

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Mental health and psychological support
Recommendations repeated from 2021: 
Health Board and Trust managers should ensure that:
•	
All children and young people with an epilepsy have ongoing screening for mental 
health problems using a validated tool as part of their routine epilepsy care.
•	
Where there are concerns about mental health, children and young people are referred 
to an appropriate mental health service via an agreed pathway. There should be timely 
access to diagnosis and treatment.
Commissioning organisations should commission increased integrated mental health 
services for children and young people receiving care for long-term conditions. This should 
be co-located within the epilepsy clinic, and inclusive of co-morbidities.
Mental health care
5% (68/1358) of children and young 
people, between the age of 5-15 years 
and diagnosed with epilepsy, had an 
identified mental health condition.
5%
Mental health screening
17% (20/119) of Health Boards and 
Trusts have formal screening for 
mental health disorders.
17%
S.D.Q
SCREENING
Paediatric 
Neurologist
Key findings
Research1 suggests there is a high incidence of mental health problems 
among children and young people with long term conditions, yet very few 
of the epilepsy patients had an identified mental health condition. Few epilepsy 
services use formal screening tools.

1 Buelow JM, et al. (2003) Behavior and mental health problems in children with epilepsy and low IQ. Dev Med 
Child Neurol
5% (53/1124) of children and young people between the age of 5-15 years 
and diagnosed with epilepsy had an identified mental health condition; 
this was the same proportion as in cohort 2 (5%, 68/1358). 
5%
 
 
 
 
Mental health care
5%
5% (53/1124) of children and young 
people between the age of 5-15 years and 
diagnosed with epilepsy in cohort 3, had 
an identiﬁed mental health condition. 
19%
S.D.Q
SCREENING
Paediatric
Neurologist
Mental health screening
19% (22/115) of Health Boards and
Trusts have formal screening for
mental health disorders. 

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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69% (79/115) of Health Boards and Trusts have agreed referral pathways 
for children with mental health conditions. 
69%
19% (22/115) of Health Boards and Trusts used formal screening for mental 
health disorders in 2021. This was a slight increase from 2020 (17%, 20/119). 
Similar proportions formally screen for autism spectrum disorder and/or 
ADHD. 
19%
6% (7/115) of Health Boards and Trusts could not refer to mental health 
assessment services, either in or outside of their Health Board or Trust. 
In 2020 this was 7% (8/119). 
6%
18% (12/115) of Health Boards and Trusts had co-located mental health 
provision within their epilepsy service, compared to 15% (18/119) in 2020. 
18%
National guidelines and standards
•	
NHS Best Practice Criteria (2019) states that there should be some co-located mental health 
provision within epilepsy clinics. 
•	
NICE Clinical Guideline 137 states that children and young people should have access 
to: written and visual information; counselling services; information about voluntary 
organisations; epilepsy specialist nurses. 
Epilepsy12 indicator
•	
Percentage of children and young people between the age of 5 to 15 years, diagnosed with 
epilepsy and an identified mental health condition.
Target audiences 
•	
Health Board and Trust managers, epilepsy clinical leads, and commissioning organisations.

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Quality improvement at Cwm Taf Morgannwg University 
NHS Health Board
The clinical team have worked to improve routine mental health screening and co-located 
mental health support in their epilepsy service. They began by identifying and reviewing 
different mental health screening tools and approaches. 
The team then agreed a set of screening protocols for their outpatient clinics. They worked 
with psychology and CAMHS to establish referral pathways for patients, and to integrate 
elements of mental health support into the epilepsy service. Data is still being collected 
on the outcomes of this pilot project. However, the initial feedback from staff, patients and 
families has been positive.

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Transition to adult services
Recommendations repeated 
from 2021: 
All Health Board and Trust managers and 
commissioning organisations should ensure 
that adult and paediatric epilepsy teams have 
time allocated in job plans and are resourced 
to allow joint transition-related clinical 
appointments and quality improvement work. 
Transition
63% (75/119) of Trusts and Health boards 
had an adult epilepsy specialist nurse 
routinely involved in the transition of 
young people to adult services.
ADULT
EPILEPSY 
SERVICE
63%
ADULT
ESN 
Epilepsy
Specialist
Nurse
Key findings
There was positive evidence of increased joint-working to support young people 
to transition to adult services. However, the available support and pathways for 
patients to transition to adult care varies considerably between services. 
62% (71/115) of Health Boards and Trusts, used structured resources 
(for example Ready, Steady, Go) to support patients’ transition to 
adult services.
62%
Most (87%, 100/115) Trusts and Health Boards had an agreed 
referral pathway for young people to transition to adult care. 
87%
65% (75/115) of Health Boards and Trusts reported having an outpatient 
service for epilepsy where there is a presence of both adult and 
paediatric professionals, compared to 60% (71/119) in 2020. 
65%
 
 
 
ADULT
EPILEPSY 
SERVICE
ADULT
ESN 
Epilepsy
Specialist
Nurse
Transition
65% (75/115) of Trusts and Health Boards 
had an adult epilepsy specialist nurse 
routinely involved in the transition of 
young people to adult services. 
65%

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Adult ESNs were routinely involved in the transition services 
at 65% (75/115) of Health Boards and Trusts, compared to 63% 
(75/119) in 2020, 54% (74/136) in 2019 and 51% (76/148) in 2018. 
65%
43% (49/115) of Trusts and Health Boards had an outpatient clinic 
specifically for young people with epilepsies. The median age at 
which these clinics typically accepted young people was from 
shortly before their 15th birthday. 
43%
National guidelines and standards
•	
NICE Quality Standard 140 (Statement 1) Young people who will move from children’s 
to adults’ services start planning their transition with health and social care practitioners 
by school year 9 (aged 13 to 14 years), or immediately if they enter children’s services after 
school year 9.
•	
NICE Quality Standard 140 (Statement 2) Young people who will move from children’s 
to adults’ services have an annual meeting to review transition planning.
•	
NICE Quality Standard 140 (Statement 4) Young people who will move from children’s 
to adults’ services meet a practitioner from each adults’ service they will move to before 
they transfer.
Epilepsy12 indicator(s)
•	
Percentage of Health Boards and Trusts reported having an outpatient service for epilepsy 
where there is a presence of both adult and paediatric professionals.
Target audience(s) 
•	
Health Board and Trust managers and commissioning organisations.
After increasing 2018-2020, there was a sustained level of adult 
specialist involvement in transition services for young people. In 
2021, 86% (99/115) of Health Boards and Trusts adult neurologists 
were routinely involved in transition to adult services, compared to 
85% (101/119) in 2020, 84% (114/136) in 2019, and 78% (116/148) in 2018. 
86%

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
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Quality improvement at Hull University Teaching Hospitals NHS Trust
The clinical team have used their Epilepsy12 data to support their planned improvement 
activity in the service. They are aiming to improve patient’s transition to adult services, 
particularly for those with learning difficulties, and to integrate mental health support 
into care plans.
Working towards those goals, the epilepsy service has: 
•	
Updated their patient information folder.
•	
Developed a bespoke transition tool.
•	
Created a second version of the tool for children with moderate to severe 
learning disabilities.
•	
Integrated mental health screening and psychological support within their 
ESN-led clinics.

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
37
Tertiary care and surgery
Recommendations repeated 
from 2021: 
OPEN UK regional networks and 
commissioning organisations should work 
together to review the Epilepsy12 findings 
in their area and ensure there is sufficient 
capacity for paediatric neurologists to provide 
timely assessment and ongoing management.
The specialist CESS centres should collectively:
•	
Review the referral criteria to ensure these 
are clear, consistent, and embedded in 
shared care pathways from secondary 
care and paediatric neurology.
•	
Agree a communications strategy to 
raise awareness of referral criteria, and 
encourage early referral of appropriate 
children and young people. 
Children’s Epilepsy
Surgical Service (CESS)
23% (25/107) of children and young 
people diagnosed with epilepsy who 
met surgical referral criteria, had a 
referral for surgical evaluation.
CESS Referral Criteria
23%
Key findings
There was evidence that some children and young people with epilepsy may 
not be receiving appropriate referrals to tertiary care and missing out on, 
or having delayed referral for, epilepsy surgery assessment. 
59% (281/480) of children and young people who met paediatric 
neurology referral criteria had either input paediatric neurologist, 
or had been referred to CESS, during their first year of care. This 
was an increase compared to cohort 2 (52%, 243/464). 
59%
36% (49/135) of children and young people diagnosed with epilepsy 
who met surgical referral criteria had a referral to CESS for surgical 
evaluation during their first year of care. This is slightly higher than in 
cohort 2 (23%). Cohorts 3 referral rates were higher than pre-pandemic 
(30% for cohort 1).  
36%
CESS Referral Criteria
Children’s Epilepsy 
Surgical Service (CESS)
36% (49/135) of children and young 
people diagnosed with epilepsy who 
met surgical referral criteria, had a 
referral for surgical evaluation.
36%
36%
59%

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National guidelines and standards
•	
NICE Clinical Guideline 137 states that children, young people should have access 
to referrals to tertiary services, including surgery if appropriate.
Epilepsy12 indicator(s)
•	
Performance indicator 3: Percentage of children and young people meeting defined 
criteria for paediatric neurology referral, with input of tertiary care and/or CESS referral 
within the first year of care.
•	
Performance indicator 3b: Percentage of ongoing children and young people meeting 
defined epilepsy surgery referral criteria with evidence of epilepsy surgery referral.
Target audience(s) 
•	
OPEN UK regional networks, commissioning organisations, NHS England and specialist 
CESS centres. 

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3. Organisation of Paediatric Epilepsy 
Networks in the UK (OPEN UK)
OPEN UK is a clinical network connecting NHS Health Boards and Trusts 
that provide care for children with epilepsies within regional epilepsy 
networks across the UK and a UK Working Group. 
You can find details of each regional network and learn more about OPEN UK at OPEN UK. 
OPEN UK Working Group 2021-22
Epilepsy12 hosts the OPEN UK Working Group meetings which bring together the regional leads 
from each OPEN UK epilepsy network. Their aim is to:
•	
Encourage collaboration and sharing of regional and national ideas, pilots, and resources.
•	
Be a national resource and professional UK body to which other organisations may come 
for information, support, data and strategic or clinical input.
•	
Facilitate links to local, regional and national funding bodies.
The fourth annual Epilepsy12 & Organisation of Paediatric Epilepsy Networks (OPEN UK) national 
conference took place on 14 September 2021. Over 150 health professionals came together to discuss 
improving paediatric epilepsy care. This was the second conference successfully hosted in an 
online format. Feedback from attendees was that the conference sessions were useful and thought 
provoking; without the need to travel to attend we also saw a wider range of registrations from 
different specialities and locations.
The event was chaired by Dr Alastair Parker, President of the British Paediatric Neurology 
Association, who facilitated stimulating discussions around the current state of paediatric epilepsy 
services and how these can be improved in future. Sessions provided updates from OPEN UK, 
Epilepsy12 and the Youth Advocates; each of which are also covered in this report. There were also 
three breakout sessions with presentation and discussion of: 
•	
Innovative technology in paediatric epilepsy, and demonstration of the ‘vCreate Neuro’ platform 
which allows families and patients to securely communicate with, and share video recording 
of seizures, with the clinical teams.
•	
The emerging evidence from two mental health interventions for children with epilepsy. 
The ‘MICE’ project is evaluating the impact of adding an additional psychological intervention 
for children with epilepsy and a mental health disorder. The ‘PAVES’ pilot is testing an approach 
to integrating psychological services into paediatric epilepsy clinic.
•	
Patient engagement, led by the Epilepsy12 Youth advocates, to share approaches to engagement 
and important themes for epilepsy teams to consider in their services. 

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During 2021-22 the OPEN UK working group have: 
•	
Held regular national network meetings sharing learning and collaborating on cross-regional 
changes such as genomic testing services for paediatric epilepsy, shared learning from local 
improvement projects and how services were responding to pandemic pressures, building links 
to new Integrated Care Systems (ICS) and NHS England regional teams.
•	
Supported Epilepsy12 in developing a user survey to understand more about the uses of, and 
requirements for, the audit in epilepsy services across the UK. More detail about what we learned 
from this below. 
•	
Fed back to Epilepsy12 about experiences of EQIP pilot, and shared ideas for the new 2021/22 
collaboratives.
•	
Reviewed their regional Epilepsy12 results and other regional or local plans.
OPEN UK and Epilepsy12 user survey 
Epilepsy12 and OPEN UK collaborated on a user survey in summer 2021 to capture feedback from 
those participating in the national audit. The survey aimed to highlight audit strengths, identify 
common problems and guide future plans to improve user experience. The survey received an 
encouraging response, with almost one hundred users leaving their feedback and fourteen of the 
seventeen OPEN UK regions being represented. Most people scored all aspects of the audit highly 
on usefulness. 
Key Survey Findings 
Reviewing and sharing Epilepsy12 results helped clinical teams to:
Initiate 
QI projects
Clarify and 
prioritise 
service needs
Improve services 
by providing 
a platform
Support 
investment bids 
and resource 
requests
Highlight 
needs to senior 
management
Identify the 
main challenges
Receive positive 
feedback
Compare 
challenges 
between trusts
Two thirds of epilepsy teams reviewed their audit results at national, regional and Trust or Health 
Board level. However, only 38% had developed action plans in response to the audit.
76% of respondents found their Trust or Health Board audit reports useful and most also felt 
Epilepsy12 was useful for future peer review, bench marking and quality improvement activities. 

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In response to Epilepsy12 results, services across the country undertook several quality 
improvement activities in 2020. Examples of these projects include:
•	
Improved care pathways between services - Established good links between epilepsy care 
and psychology, mental health, tertiary transition and community services. 
•	
New services and investment – Rewrote business cases, ran local epilepsy audits, investigated 
links to sleep deprivation and set-up First Fit Clinics. 
•	
Technology – Initiated telephone/video clinics, electronic letters and prescriptions, novel 
databases and a wider needs screening tool. 
•	
Records management - utilised new local Epilepsy12 data collection sheets and ECG forms 
for patient notes to help data submission.
When we asked users what the barriers were to using Epilepsy12 for planning and quality 
improvement, the common answers were surrounding the data quantity; time taken to collect 
and submit data; lack of protected time to participate in the audit or quality improvement 
activities; and IT difficulties.
Actions and conclusions
Overall, teams were positive when discussing Epilepsy12 and appreciated the value in 
participating in the audit. Users were keen to highlight the benefits brought to their services, 
for example Epilepsy12 facilitated collaboration, bench marking and quality improvement. 
Audit results evidenced business cases and highlighted challenges to prioritise future plans. 
The survey identified common problems, with the greatest roadblocks to participation being 
time and data burden. 
Considering the feedback, the Epilepsy12 project team are working to improve user experience 
by undertaking the following actions:
•	
Reducing the metrics currently being collected. 
•	
Reviewing the platforms’ access, functionality and speed. 
•	
Providing more guidance and support to clinical teams on data entry. 
•	
Recommending to senior leaders that time for audit and improvement are included 
in job plans.
•	
Providing evidence and useful resources for clinical teams to use within their Trust or 
Health Board; showing both about successes and where additional resource is required.  
•	
Providing robust and timely data.
•	
Shortening our reports, and improving other resources including the one-page poster 
summaries and live dashboards.
•	
Continuing to consult users through OPEN UK on Epilepsy12 changes, plans and projects.  
 

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4. Epilepsy12 Youth Advocates 2021-22
Hi everyone! If you don’t know who we are, we’re a group of volunteers 
aged 13-25 who have experience or an interest in epilepsy. We are 
supported by an epilepsy specialist nurse and staff from RCPCH to 
work together to improve epilepsy care and experience for patients.
“Despite 
everything, 
we did it.”
The way our project works is by meeting online and having discussions 
about different topics that we have chosen linked to the Epilepsy12 Audit 
or on questions that the audit team would like our views on. 
Despite lockdowns, the pandemic, having COVID, working online and everything thing else, 
we’ve been really busy. Since April 2021 when we last wrote to you, we have: 
Celebrated our 
3rd birthday!
Recorded a podcast 
on the experience 
of being diagnosed
Spoken at the RCPCH 
Annual Conference 
and the Epilepsy12 
OPENUK Conference
Won an RCPCH &Us 
Volunteer Award
Started a new project 
on care plans to provide 
examples to schools
Published articles 
and resources on our 
experience, findings 
and project
Agreed to continue 
working on 
mental health
Published our 
templates so units 
can do their own clinic 
chat checklists
Told you it’s been busy! We looked at the audit findings together, and decided that improving 
school individual healthcare plans was something that we wanted to get involved in. We could see 
that there weren’t huge numbers of school care plans in place (about 32%) and we had really mixed 
experiences ourselves.  We had a think about what makes a good school, college or work care plan 
for us and looked at examples from around the world. 

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Our tips are: 
Keep it 
personal
Keep it 
up to date
Keep it 
relevant
Keep it 
short but 
useful!
Keep it 
visual
Things to include:
•	
Seizure care – what to do, who to call, how to help
•	
Information about me before and after a seizure
•	
Contact details for me, my chosen contact, my specialist health team
•	
Links to charities that support epilepsy, mental health, and other areas of our life
•	
Reassurance for me and those supporting me about what is my normal 
•	
Clear information in plain English 
We think that it would be good to have different versions for different reasons. You might need 
a really complete health care plan full of your medicine information, diagnosis, treatment plans 
if you are staying away for the night or your epilepsy needs more support. We think it would be 
good to have a small card version with an easy to follow flowchart for our friends and extended 
family to have when we visit, and a short but personal version that we can carry with us or give 
to people we see regularly. 
You’ll have your own school care plans, seizure management plans, individual health plan, 
education health care plan, epilepsy plan, epilepsy passport…. (so many different names for the 
same thing!). Have a look and see if it is visual, easy to understand and looks like it talks about 
a real person with likes, dislikes, hopes and dreams. Or does it just look like another impersonal 
form full of boxes?
It would be good to see if we can increase the numbers of children and young people talking 
with confidence about their school, college or work care plan. We think that there is more to 
be done in school to raise awareness of epilepsy. Sometimes it helps us to be involved and it 
empowers us to talk in assembly and tell people our experiences, other times it would be nice if 
it was done without everyone knowing about our diagnosis – so always ask us first if we want to 
be involved. 
Don’t forget, there are lots of examples out there like the Young Epilepsy Guide for Schools, 
examples of school training by Epilepsy Action, and experiences shared on The Channel 
and The Epilepsy Space that you can learn from too. We will be sharing our experiences and 
examples of a good care plan for you to use – keep an eye on our webpage for more details!

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We were also really pleased to be able to celebrate our 3rd birthday and all the 
work that has gone on over the last few years. 
Our standout moments over the 3 years have included:
•	
Winning 2 awards from HQIP and 1 from 
RCPCH &Us for our volunteering.
•	
Speaking at annual conferences each year 
about our projects.
•	
How we have started conversations about 
mental health in different ways with doctors.
•	
Planning our visits to hospitals before the 
pandemic, then changing everything to do 
them online.
•	
Lots of games, fun, laughter, and time 
together over the years.
•	
Seeing our information published.
•	
Feeling really proud that epilepsy units 
want to work with us, or are interested 
and inspired by our work. 
We just wanted to say a big thank you to all the 
130+ children, young people and families who 
have been involved over the last 3 years, to all the 
units and staff that took part in our project and 
all the young people, parents, carers and workers 
that have helped us as part of the Epilepsy12 
Youth Advocates. We are really looking forward to 
the next 3 years!
For more information about the Epilepsy12 Youth 
Advocates please visit our webpage or contact 
xxx@xxx.xx. 

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5. Epilepsy Quality Improvement 
Programme (EQIP) 2021-22
Epilepsy12 quality improvement programme
The RCPCH EQIP pilot programme delivered in 2019-20 involved multi-disciplinary paediatric 
epilepsy teams from 11 NHS Trusts in England and one Health Board in Wales, (Epilepsy12 
Combined organisational and clinical audits: Report for England and Wales, Round 3 Cohort 
2 (2019-2020), pg. 39). Their response to the emerging COVID-19 pandemic demonstrated 
their commitment to improving the care provided to children and young people within NHS 
paediatric epilepsy services.
Following the success of the 2019-20 pilot, the programme was extended in 2021. The second cohort 
of teams involved 17 new multi-disciplinary paediatric epilepsy teams – 11 from individual NHS Trusts 
and one Integrated Care System (ICS) network structure of six NHS Trusts. Over a seven-month period 
between August 2021 and April 2022, online practical training and support helped teams identify local 
areas of improvement, see table 1.
EQIP teams were provided with high quality QI training by distance learning in a virtual format. 
This was co-designed and delivered with an expert QI trainer/facilitator and offered flexible remote 
learning options which were adaptable to the pace of individual teams. Team members could 
attend live training webinars and access digital pre-course materials, case studies and real-world 
training examples through a dedicated online microsite. A framework of support was offered to each 
identified team champion. Additional one-hour monthly support calls were offered to all teams, 
alongside 1:1 team meetings with QI facilitators to support them in achieving their project aims. 
The 2021-2022 programme was designed to offer more flexibility and work around the current 
capacity of participant teams. The programme encouraged a multi-disciplinary whole-team approach 
to service improvement, with a particular focus on children and young people’s engagement and 
measurement for improvement. It was recommended that teams devoted at least 1-2 hours per week 
towards the projects.
Visit the RCPCH EQIP website https://eqip.rcpch.ac.uk or Twitter #RCPCHEQIP to learn more 
and to watch the teams present their projects from an EQIP learning event on 17 March 2022. 
Posters of their EQIP project interventions are also available.

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Table 1: The 2021/2022 participant EQIP teams and their QI project aims.
Team 
Project aim
Developing Mental health pathways
Epsom and St Helier 
University NHS Trust
Identify and implement a mental health screening tool 
for CYP with epilepsy to identify those at risk. 
North-West Anglia 
Foundation Trust
Improving mental health pathways using signposting.
Warrington and Halton Teaching 
Hospitals NHS Foundation Trust
Engage with families to improve the mental health care 
pathway for young people with epilepsy.
Improve and adapt the transition process to adult services
Croydon Health Service 
NHS Trust
Improve and adapt the transition process for young people 
with epilepsy.
East Lancashire Hospital
NHS Trust
Develop the transition service for young people with epilepsy.
Developing an integrated care pathway and increasing specialist input
North Tees & Hartlepool 
NHS Foundation Trust
Reduce referrals from 12 to 4 weeks for 50% of patients 
following first epilepsy seizure.
Salisbury NHS 
Foundation Trust
75% of CYP with first afebrile seizure will be seen in clinic 
within 2 weeks of referral.
Improving patient engagement processes
Barts Health NHS Trust
Obtain meaningful feedback on our service from 50% of 
children, young people and families by March 2022.
Doncaster and Bassetlaw 
NHS Foundation Trust
By March 2022, 70% of children aged 11-19 Years with Epilepsy 
will have Digital feedback forms offered in clinics (Consultant 
and Nurse led) and on acute wards.
SUDEP risk
Oxford University Hospitals 
NHS Foundation Trust
Develop a patient standardised toolkit for clinicians to use 
to provide information on SUDEP to families, enabling a 
personalised annual discussion on SUDEP for at least 80% 
of children with epilepsy.

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Table 1: The 2021/2022 participant EQIP teams and their QI project aims.
Team 
Project aim
Digitalisation of Epilepsy passports
University hospitals 
of Morecambe Bay 
NHS Foundation Trust
Produce epilepsy passports electronically for 50% of 
our patients with epilepsy and complex comorbidities. 
Improving the First year of care
West Yorkshire & Harrogate 
Health and Care Partnership 
(ICS team including six 
NHS Trusts)
Establish a standardised first year of care pathway for 
patients with epilepsy diagnosis (sub-projects include 
the areas of Transition, Mental health and reducing waiting 
times for first referral).

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Table 2: Service-level outcomes of the EQIP
Status pre-EQIP 
Changes and benefits post-EQIP
Participant teams initially 
focused on the negative 
barriers they faced, in 
comparison to the successes 
they achieved as a service.
By using QI methodology, service teams gained skills in how 
to break down challenges and find solutions. Trusts were 
therefore able to achieve outcomes meeting their specific 
service goals.
For example, the successful development of an integrated 
digital Epilepsy Passport - co-designed with patients and 
their families - shows the barriers that can be overcome when 
working with multi-faceted teams.
Few teams had prior 
knowledge of quality 
improvement methods.
All teams have now been trained in the use of QI tools to 
help diagnose and test solutions when making service 
improvements. This resulted in multiple teams reporting a 
reduction in new patient referral waiting times, for example, 
above 16 weeks to within 6 weeks or 12 weeks to 4 weeks.
Some service teams 
struggled to communicate 
effectively; especially when 
working across different sites 
within their NHS Trust, or 
across multiple Trusts in 
ICS structures.
Many were unsure what 
an effective epilepsy service 
team looked like beyond 
the roles of the consultant 
and ESN.
The ICS team have increased their outputs by working on 
improving effective communication methods across six sites. 
The group shared knowledge in developing pathways in 
mental health support, establishing effective transition clinics 
and reporting on a reduction in waiting times for first seizure 
referrals. 
Further examples of incremental changes to services has led
to the implementation of new ED patient referral processes to 
paediatric epilepsy clinics. These have been embedded within 
Trust guidelines.
Some of the service teams 
were not participating in 
Epilepsy12.
All teams on the programme participated in the Epilepsy12 
audit by the end of the programme cycle. They had a greater 
understanding of its value, and how to use the data in local QI 
activity.
Services lacked clear 
processes to meet national 
standards, measured in 
Epilepsy12’s key indicators.
Teams used the audit data to review areas for improvement 
and help plan their projects. Several projects focused on 
building new processes, for example to: ensure discussion of 
SUDEP risk with patients and their families, establish a new 
mental health care pathway, developing screening tools and 
methods of signposting information or services.

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Table 2: Service-level outcomes of the EQIP
Status pre-EQIP 
Changes and benefits post-EQIP
Some teams were not able 
to effectively engage with 
children and young people, 
or to include them in the co-
design of services.
All teams have reported an increase in regular patient and 
family engagement, using tools and techniques they have 
learnt. Teams focusing on transition to adult services have 
worked with children and young people on capturing their 
needs and wants. This helped to structure and establish an 
efficient referral pathway for young children aged from 14 
years old onwards.
All teams wished to improve 
aspects of their culture and 
clinical services.
All teams experienced a transformation in terms of the skills 
learnt from expert trainers and each other. Teams benefited 
from the knowledge provided through monthly coaching and 
support. All teams experienced incremental changes within 
team interactions and improvements in how they deliver their 
service to children and young people.

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Lessons learnt
Team working and communication – Services need the time and space to define 
what makes an effective team and agree a shared purpose when developing 
service improvements. It is important the teams strengthen their team building 
and improve communication processes to see significant improvement and meet 
national standards.  
1
QI training and support – NHS Trusts should incorporate time within job plans 
for teams to deliver quality improvement in their services and share learning within 
the organisation; whether through programmes such as EQIP or independently. 
In EQIP, teams found the monthly coaching and support crucial; helping to keep 
momentum through incremental changes as well as providing guidance to help 
resolve barriers. 
2
Patient and family engagement – EQIP’s new training and structure placed a 
greater emphasis on patient engagement, and for many of the 2021/22 teams this 
was at the centre of their project interventions. Teams had a better understanding 
of how to include patients and families in service redesign. EQIP teams were able 
to identify where assumptions made about patient preferences were unproductive. 
They tested and quickly abandoned practices where these did not result in 
engagement. 
3
Overcoming challenges – Due to the COVID-19 pandemic, at times some of the 
improvement projects lost momentum when the service or the wider NHS were 
under significant pressures. In challenging conditions, the teams and individuals 
demonstrated dedication to their continued efforts to improve the care for children 
and young people.
The pandemic also prompted significant change, and teams found the importance 
of using data to evidence and understand change, with both local and national data 
providing insights into variation between and within services. 
4
Network links and sharing of good practice – There is a need for platforms, 
such as OPEN UK, where service teams can share best practice across different 
Trusts, ICSs or regions. These connections may assist in reducing variation in practice 
and develop standardised processes and procedures to improve the quality of care.
5

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Acknowledgements
We would like to say a huge thanks to all the participant teams. It has been a pleasure supporting 
their QI journey and seeing the teams’ growth. We would like to acknowledge a special thanks also 
to the advisors and faculty for their valuable input for this programme.
ESN advisors: Alison Mollett, Amanda Tomlin, Carolyn McAskil, Christine Bennett, Debbie Dean, 
Emma Hassan, Jill Conium, Laura Neely, 
QI Trainer: Dr Patricia O’Connor, CEO QI Discovery. 
Faculty team: Angie Pullen, Dr Colin Dunkley, Emma Sparrow, Dr Megan Peng, Mirek Skrypak, 
Dr Richard Brown, Rosemarie Pardington, Dr Sreenivasa Tekki-Rao. 

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6. Quality improvement in University 
Hospitals of Derby & Burton NHS 
Trust (UHDB)
Presented by: Dr Sally Moss (Associate Specialist in Paediatrics), Dr Sumant Kumar (Consultant 
Paediatrician), Dr Rusia Manuel (Consultant Paediatrician), Dr Heather Carswell (Speciality 
Doctor), Mrs Amanda Cholerton (Clinical Physiologist/EEG Lead), Miss Rachael Wheway (Senior 
Children’s Epilepsy Specialist Nurse), Mrs Carly Sladen (ESN), Mrs Laura Churm (Paediatric 
Lead Nurse), Dr Gisela Robinson (Consultant Paediatrician & Clinical Director Paediatrics), Mrs 
Rachael Jerram (General Manager, Paediatrics). 
The epilepsy services in UHDB
2.7 whole time equivalent (WTE) 
Consultant Paediatricians/Associate 
Specialists with expertise in epilepsy.
2 sites: Royal Derby Hospitals (RDH) 
and Queen’s Hospital Burton (QHB).
2 WTE Epilepsy Specialist 
Nurses (ESN).
A combined population of more 
than 800 children and young 
people with epilepsy.
800
2.7
2
2

Figure 4: About the epilepsy services and workforce in UHDB NHS Trust
Over the past year, our Epilepsy team have worked hard to continue to improve the quality of our 
epilepsy care for children, young people and families. We are pleased to share with you three quality 
improvement activities we have successfully developed.

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One stop Epilepsy-EEG service for Children’s Epilepsy Clinics 
In March 2020, the coronavirus pandemic halted almost all outpatient services 
at our hospital. 
As most of our consultations became telephone or video consultations, we started exploring new ways 
of working. We initiated a new one-stop service to reduce foot-traffic within RDH and QHB Hospitals. 
Our aims were to:
•	
Enable patients to receive diagnosis, and potentially treatment, the same day as their 
initial consultation.
•	
Provide same day standard EEG testing, which will reduce footfall within the hospital 
and prevent patients returning on multiple days for tests.
•	
Reduce EEG waiting times for all other patients attending the main department.
•	
Reduce COVID-19 risks to visitors, patients and staff. 
Three epilepsy clinics are run on Tuesday mornings at RDH and supported by epilepsy specialist 
nurses. As there were lower outpatient EEG demands during the pandemic, we were able to spare 
an EEG machine. We could therefore dedicate a separate room for EEGs near to the clinics. New or 
clinically urgent patients are seen by the paediatrician and if an EEG is clinically indicated, we can 
perform this in the clinic. The advanced clinical physiologist leads on this, performing the EEG and 
providing a provisional report. 
The outcomes included: 
•	
68 EEGs were performed in the clinic over 6 months from May 2020. 
•	
20 EEGs were abnormal and supported an epilepsy diagnosis.
•	
10 of the children were newly diagnosed with epilepsy and started on medication on the 
same day, and one other child started medication within a week.
•	
Other children treated for non-convulsive seizures, had their medication doses increased 
or received confirmation that their clinical events were non-epileptic. 
We have been able to reduce our waiting times for routine standard EEGs from 6 weeks to 2 weeks, 
in line with NICE guidance, as well as outpatient EEG waiting times. Performing EEGs and obtaining 
verbal provisional reports in the outpatient department during a clinic session has benefitted 
children, families and our epilepsy service. We were able to provide definitive epilepsy diagnoses, and 
in many instances, start treatment on the same day. This has reduced the number of hospital visits 
needed for patients. 
These outcomes, along with the positive patient experiences highlighted in our service reviews, have 
supported a business case to purchase more equipment and improve the service further. Following 
the success of the one stop EEG clinic in Royal Derby, we have now initiated a similar service at 
Queen’s Burton Hospital.

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Epilepsy service review at Royal Derby Hospital
In October 2020, we conducted a service review of children attending the RDH epilepsy clinics to 
identify our total epilepsy case load and audited this against NICE guidelines on epilepsies. We used 
our results to support business cases and request more resource: 
Tertiary neurology input - We identified a case load of 652 epilepsy children from RDH, out 
of which 303 (46.5%) met the criteria for review by a Neurologist and 85 (13.2%) were identified 
as ‘complex patients’ who need to be under shared care with a tertiary centre. The service 
review was focused on RDH, where the tertiary paediatric neurology input is provided by 
Nottingham University Hospital NHS trust (QHB has a separate tertiary pathway with input 
from Birmingham Children’s Hospital NHS trust). 
Only a small proportion of patients received the appropriate level of tertiary input. We 
identified this as a clinical risk at our clinical governance meeting, which led to discussions 
with our commissioners and local tertiary paediatric neurology services. We are pleased to 
receive increased capacity from our joint paediatric neurology clinics in RDH, to allow visiting 
Paediatric Neurologists to review patients, and be entering a shared care system with the local 
tertiary centre to treat our most complex children. 
Epilepsy Specialist Nurses - Epilepsy12 recommends 1 WTE Epilepsy Specialist Nurse per 
250 patients. We had 2 WTE ESN working across both sites, with over 800 patients under the 
care of the Epilepsy Team. The ESNs were also regularly supporting general paediatricians, 
children’s emergency staff, community paediatricians, schools, social workers, GPs and 
ambulance crews. This was alongside attending consultant/ESN clinics and providing regular 
epilepsy training sessions to parents, schools, nursery staff and hospital colleagues. 
It was clear that this was unsustainable. A business plan was subsequently agreed by the Trust 
to appointment the epilepsy team dedicated administrative support and employ another 1 
WTE ESN. 
Speciality Doctor in Paediatrics - We were delighted that our service review and subsequent 
business plan enabled us to appoint a Speciality Doctor who will be able to provide clinics and 
care for children with epilepsy across both Burton and Derby sites. 
Another service review at the end of the year will further track our progress and lead to more 
improvements. 

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Improving patient information about the epilepsy service
It is our usual practice to provide children, young people and families with a range of written 
information on various topics when they come to clinic. We have developed an easily accessible 
webpage for families to introduce our service and team, explain how the service is run, and provide 
contact details for the Children’s Epilepsy Service and the outpatient department. 
We provide information on investigations which may be recommended, for example EEGs, MRI brain 
scans, and links to general information about epilepsy, such as the Epilepsy Action and Epilepsy 
Society websites. We also provide advice on seizure management, including the RCPCH First Seizure 
advice leaflet, epilepsy first aid and safety as well as reducing risk, SUDEP, medication, the ketogenic 
diet, Vagal Nerve Stimulation, and the Children’s Epilepsy Surgical Service. 
There is specific information available for teenagers and young people about our teenage clinics as 
well as useful links and documents from Young Epilepsy. The Epilepsy12 audit continues to highlight 
a significant gap in the provision of support for children and young people’s emotional wellbeing. 
Whilst we try to address this in our clinics, the website also signposts to local and national resources 
for this support.
Final reflections and plans for the future
Our team are proud of what we have achieved this year. We have felt well supported by our 
managers and the Trust, with more paediatric neurology expertise to improve the care of 
our children with epilepsy. We are delighted to have been able to expand our dedicated team 
and will continue to strive to improve our service. 
Our future projects will be the continued development of our new Ketogenic Diet service, 
and extending the ESN training sessions to education settings to further include parents/
carers. Additionally, we want to develop strategies to identify and support children and young 
people with epilepsy who have difficulties with emotional wellbeing.

Epilepsy12: 2022 Combined organisational and clinical audits: Report for England and Wales Round 3, Cohort 3 (2019-21)
Epilepsy12 National Organisational Audit Report 2018
Royal College of Paediatrics 
and Child Health
5-11 Theobalds Road, 
London, WC1X 8SH
The Royal College of Paediatrics and Child Health (RCPCH) is a registered charity in England and Wales (1057744) and in 
Scotland (SC038299).
Healthcare Quality 
Improvement Partnership (HQIP) 
Dawson House, 5 Jewry Street,
London EC3N 2EX
Royal College of 
Paediatrics and Child Health
RCPCH
Published by the RCPCH
Version 2.0: updated November 2022
Epilepsy12 
Combined organisational and clinical audits: 
Report for England and Wales Round 3 Cohort 3 (2019-21)