Epilepsy12 2020 National organisational and clinical audits - combined report on 2019 data
Source: data.gov.uk (2020-10-02)

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

Royal College of 
Paediatrics and Child Health
RCPCH
National Clinical Audit of Seizures and Epilepsies 
for Children and Young People
Combined organisational 
and clinical audits:
Report for England and Wales 
Round 3 Cohort 1 (2018-19)
Audits 
RCPCH

Epilepsy12
National Clinical Audit of Seizures and Epilepsies for Children and Young People
Combined organisational and clinical audits: Report for England and Wales, Round 3 Cohort 1 (2018-19) 
The Healthcare Quality Improvement Partnership (HQIP) is led by a consortium of the Academy of 
Medical Royal Colleges, the Royal College of Nursing and National Voices. Its aim is to promote quality 
improvement in patient outcomes, and in particular, to increase the impact that clinical audit, outcome 
review programmes and registries have on healthcare quality in England and Wales. HQIP holds the 
contract to commission, manage and develop the National Clinical Audit and Patient Outcomes 
Programme (NCAPOP), comprising around 40 projects covering care provided to people with a wide 
range of medical, surgical and mental health conditions. The programme is funded by NHS England, 
the Welsh Government and, with some individual projects, other devolved administrations and crown 
dependencies. www.hqip.org.uk/national-programmes
Front cover image: The author and publisher would like to thank Young Epilepsy for permission to use 
the image shown.
© 2020 Healthcare Quality Improvement Partnership (HQIP)
Published by RCPCH September 2020. 
The Royal College of Paediatrics and Child Health is a registered charity in England and Wales (1057744) and in Scotland (SCO38299).

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
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Acknowledgements
The Epilepsy12 Project Board would like to thank all of the administrators, clinical audit department 
staff, data analysts, doctors, nurses and others within participating Health Boards and Trusts who have 
given their time and effort to collect information for the audit and who continue to develop and carry 
out action plans to improve the paediatric epilepsy services that they deliver. We would particularly like 
to thank 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) regional network leads and 
quality improvement facilitators 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, Chair of British Paediatric Epilepsy Group (December 2019 –)
Nayan Bedia, Project Coordinator, Royal College Paediatrics of Child Health (April 2017 – February 2018)
Ms Nicky Barnes, Nurse Practitioner for Complex Epilepsy, Royal College of Nursing (April 2017 – 
September 2017)
Prof Nicholas Bishop, Vice President for Science & Research, Royal College of Paediatrics and Child Health 
and Chair of the Epilepsy12 Project Board (March 2019 – )
Ms 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 Organisation of Paediatric Epilepsy Networks in the United Kingdom (OPEN UK) Working Group
Ms Sharon Brown, Clinical Nurse Specialist Paediatric Epilepsies, Royal College of Nursing
Ms Vivien Dunne (née Seagrove), Project Manager, Healthcare Quality Improvement Partnership (HQIP)
Professor Anne Greenough, Vice President, Science and Research, Royal College of Paediatrics and Child 
Health and Chair of the Epilepsy12 Project Board (April 2017 – December 2018)
Professor Martin Kirkpatrick, Consultant Paediatric Neurologist, Scottish Paediatric Epilepsy Network
Ms Carol Long, Chief Executive, Young Epilepsy (April 2017 – December 2018)
Dr Katherine Martin, Consultant Paediatrician, British Academy of Childhood Disability
Dr Ailsa McLellan, Consultant Paediatric Neurologist, British Paediatric Neurology Association (April 2017 – 
December 2019)
Dr Nandini Mullatti, Consultant Clinical Neurophysiologist, British Society for Clinical Neurophysiology 
Ms Rosemarie Pardington, Director of Integrated Care, Young Epilepsy (March 2019 – )
Dr Marcia Philbin, Assistant Director, Research & Policy Division, Royal College of Paediatrics and Child 
Health (April 2017 – June 2019) 
Ms Angie Pullen, Epilepsy Services Manager, Epilepsy Action
Mr Mirek Skrypak, Associate Director for Quality and Development, Healthcare Quality Improvement 
Partnership (HQIP) 

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Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
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 Organisation of Paediatric Epilepsy Networks in the United Kingdom (OPEN UK) Working Group 
Ms Jill Conium, Children’s Epilepsy Specialist Nurse, East and North Hertfordshire NHS Trust (November 
2019 – )
Ms Claire Dorer, Chief Executive, National Association of Independent Schools & Non-Maintained Special 
Schools (NASS) (April 2017 – November 2019)
Dr Trupti Dhorajiwala, Consultant Paediatrician, Tameside and Glossop Integrated Care NHS Foundation 
Trust (November 2019 –)
Ms Diane Flower, Lead Children’s Epilepsy Specialist Nurse, University Hospitals Bristol NHS Foundation 
Trust
Dr Ramesh Kumar, Consultant Paediatrician, South Tees Hospitals NHS Foundation Trust
Dr Jeya Naratajan, Consultant Paediatrician, Cym Taf LHB (November 2019 – )
Ms Peri O’Connor, Healthcare Projects Coordinator, Epilepsy Action
Ms Millie Power, Patient & Nurse representative 
Dr Colin Reilly, Young Epilepsy Representative (August 2019 – )
Dr Robert Robinson, Consultant Paediatric Neurologist, Great Ormond Street Hospital, GOSH
Mr Malcolm Roxburgh, Epilepsy12 Statistician, Royal College of Paediatrics and Child Health 
Ms Lisa Thurston, Parent and Young Epilepsy Representative
Dr Anissa Tonberg, Policy Officer, Epilepsy Scotland 
Dr Sara L. Shavel-Jessop, Clinical Paediatric Neuropsychologist, Great Ormond Street Hospital, GOSH
Dr Kelly St Pier, Neurophysiology Professional Service Manager (Video-telemetry), GOSH and Immediate 
Past Chair of the Association of Neurophysiological Scientists
Mr Neil Williamson, Epilepsy Nurse Specialist (Children), Lewisham and Greenwich NHS Trust (April 2017 – 
August 2019)

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
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Contents
Foreword..............................................................................................................................................................	8
Executive summary..........................................................................................................................................	9
Introduction .......................................................................................................................................................	12
Audit aims and scope .......................................................................................................................................................	12
Data completeness ............................................................................................................................................................	12
Audit outputs and publications ................................................................................................................................	13
Quality improvement .......................................................................................................................................................	13
Audit methodology and dataset development .............................................................................................. 14
Data entry ................................................................................................................................................................................	15
Themes and recommendations ..................................................................................................................	16
Clinical audit 2018-2019 results ..................................................................................................................................	16 
Organisational audit 2019 results .............................................................................................................................	16
Combined key findings and recommendations............................................................................................	17
Summary of recommendations ...................................................................................................................32
Organisation of Paediatric Epilepsy Networks in the UK (OPEN UK).............................................	40
Epilepsy12 Youth Advocate Clinic Chat Checklist.................................................................................	 42
Support with worries and anxieties........................................................................................................................	42
Epilepsy Quality Improvement Programme (EQIP)..............................................................................	46
	
Background.............................................................................................................................................................................	46  
Project scope...........................................................................................................................................................................	47 
How the programme works .........................................................................................................................................	49
Residential weekend training......................................................................................................................................	50
Useful resources.................................................................................................................................................	52
Glossary of terms and abbreviations..........................................................................................................	55

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
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The full audit results and additional information are listed below. These are available to 
download from Epilepsy12.
Appendix A: Full Epilepsy12 Round 3 2019 organisational audit results 
Participation 	
Workforce 
Clinic configuration 
Tertiary provision 
Investigations 
Service contact  
Transition 
Mental health
Neurodevelopmental support 
Care planning 
Patient database or registry
Appendix B: Organisational findings by OPEN UK regional networks
Appendix C: List of organisational data figures & tables 
Appendix G: Full Epilepsy12 clinical audit results for Round 3, Cohort 1  
Participation and case ascertainment 
Description of cohort 
Diagnostic status 
Initial referral and examination
Description of episodes
Convulsive seizures
Family history of epilepsy 
Neurodisability or neurodevelopmental problems
Mental health conditions 
Investigations 
Treatment 
Care planning
Professionals and services involved in care
Overview of performance indicators
Appendix H: List of clinical data figures & tables 
Appendix I: Data completeness
Appendix J: Participating Health Boards and Trusts by OPEN UK region
Appendix K: Glossary

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Foreword
Epilepsy is the commonest significant neurological disorder affecting children. The needs of children 
with long term conditions, including epilepsy, are recognised as requiring particular attention in the 
NHS Long Term Plan. It is critical that children and young people have sufficient access to the full 
paediatric epilepsy team, and are supported to navigate the transition from child to adult health 
services.
The National Epilepsy12 audit was first undertaken in 2009, and in this, its third incarnation, we can 
see that significant improvements in epilepsy services for children have come through. There is no 
room for complacency, however. In these challenging times, with so many resources being directed 
towards saving the lives of those affected by the current Coronavirus pandemic, we need to also 
maintain focus on supporting children with epilepsy and their families. The Royal College of 
Paediatrics and Child Health with Epilepsy12 will continue to support the NHS services who have 
done so much to improve epilepsy care for children and young people. 
My heartfelt thanks go to all of those involved in this important work at this difficult time.
Professor Nicholas Bishop
Vice President for Science and Research, Royal College of Paediatrics and Child Health, and Chair of 
the Epilepsy12 Project Board

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
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Executive summary
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.1 The State of Child Health2 has highlighted 
some key trends in paediatric epilepsy, showing that prevalence of epilepsy has reduced in recent years 
which may partly reflect more specific diagnosis and that there has been progress towards closing the 
inequality gap in emergency admissions for children with epilepsy. Epilepsy12 (the National Clinical 
Audit of Seizures and Epilepsies for Children and Young People) uses data collected from hospitals and 
clinics to support further quality improvement in paediatric epilepsy services.  
This is a combined report of the organisational and clinical audits. The results are of the organisation 
of paediatric epilepsy services for children and young people in England and Wales as described at 
November 2019, and the standard of clinical care provided by services that focuses on patients with 
a new diagnosis of epilepsy between 12 July 2018 – 30 November 2018 for cohort 1. 
Key findings 
The key findings bring together important results the organisational and clinical audits, alongside new 
recommendations for quality improvement. (The full audit key findings and recommendations 
are listed further within the report from pg 17 - pg 32)
Key finding (A) - First EEG waiting times: Almost half of children with an epilepsy had to wait more 
than four weeks for their first EEG from the time of request. This is outside the four weeks 
stated in NICE’s Quality Statement 2 for children and young people having initial investigations for 
epilepsy. 
Recommendation (1) All Health Boards and Trusts* should: 
•
review and improve their referral pathways to ensure all first EEGs are achieved within a maximum
of four weeks of request date. Health Boards and Trusts with EEG services should co-ordinate
with their commissioners and regional OPEN UK network to ensure timely access to EEG
services for all relevant Trusts and Health Boards.
Key finding (B) - ECG and MRI investigations: A little over two thirds of children and young people 
who met the defined indications for an MRI, had received an MRI during their first year of care. A 
similar proportion of children and young people with epilepsy and had convulsive seizures obtained 
a 12-lead ECG during their first year of care. SIGN guidance, and current British Paediatric Neurology 
Association (BPNA) PET teaching curriculum, state that all children with a convulsive seizure should 
have a 12-lead ECG.
Recommendation (2) Health Boards and Trusts* should: 
•
ensure that they can provide MRI to children of all ages via a sedation and/or anaesthetic pathway,
•
document within medical records and Epilepsy12 audit the confirmed epilepsy syndrome
diagnosis (including BECTS, CAE, JAE, JME and ‘epilepsy with generalised tonic clonic seizures
only’) as MRI is not routinely indicated for these children,
•
review local pathways to include routine 12-lead ECG for children with convulsive seizures,
•
ensure 12-lead ECG results are accessible within the ongoing clinic health records.
1	
Joint Epilepsy Council of the UK and Ireland. (2011).  Epilepsy prevalence, incidence, and other statistics
2	 Royal College of Paediatrics and Child Health (2020) State of Child Health in the UK
*This may include: Trust medical director and paediatric epilepsy clinical lead
* This may include: Department leads at MRI, EEG services within Trusts or Health Boards, paediatric epilepsy services

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Key finding (C) - Mental health provisi­on: Few Trusts and Health Boards are able to provide co-located 
mental health services for children and young people with epilepsy. Routine screening for mental 
health was not widely available. 
There was a very small number of children and young people with epilepsy who had an identified 
mental health condition. This was lower than would be expected based on other available evidence 
about the incidence of mental health conditions for children with epilepsy.  
Recommendation (3) Commissioners, Health Boards and Trusts* should ensure that: 
•
all children with an epilepsy should have ongoing screening for a range of mental health
problems using a validated tool (e.g. Strengths and Difficulties Questionnaire),
•
where there are concerns about mental health problems the child and young person should be
referred to an appropriate mental health service via an agreed pathway for ongoing diagnosis
and treatment,
•
services for children and young people with epilepsy should include sufficient integrated mental
health provision, some of which should be co-located within the epilepsy clinic.
Key finding (D) - Epilepsy Specialist Nurses: There was evidence of an increasing epilepsy specialist 
nurse (ESN) workforce and more widespread involvement within the first year.  This positive 
development is 
alongside 
encouraging 
increases 
in 
contact 
with 
specialists 
and 
fewer 
withdrawals of epilepsy diagnoses. NICE CG 137 and SIGN guidance both highlight the importance of 
ESNs as part of paediatric epilepsy care networks and teams. There remain some Health Boards and 
Trusts where ESN involvement is absent or insufficient.
Recommendation (4) Epilepsy Specialist Nurses provide a wide-ranging contribution to the care 
of the child and roles should take account of local populations and service configurations. All 
Health Boards and Trusts should employ sufficient ESNs to ensure at least 1 WTE ESN for every 250 
children with epilepsy.  This is so that families, alongside other ESN roles, can reliably receive direct 
individualised specialist advice by the same or next working day between scheduled reviews.
Key finding (E) - Specialist paediatricians and clinical leads: There is evidence of increasing 
“paediatrician with expertise” involvement within the first year of care, although access to paediatric 
neurology where indicated remains static. While children with epilepsy received specialist input during 
the first year of care, there was evidence that in many cases there were waits for input beyond 2 weeks. 
NICE CG137 and NICE QS1 state 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.
Key finding (F) - Best Practice Criteria for clinics: There are few Trusts and Health Boards able to 
provide, or working towards, clinics for paediatric epilepsy which meet the Best Practice Criteria (BPC). 
There has been a slight increase between April 2018 and November 2019. 
Key finding (G) - Children’s Epilepsy Surgical Service (CESS): There is evidence that many children who 
meet the Children’s Epilepsy Surgical Service (CESS) referral criteria are not being referred according to 
Recommendation (5) All OPEN UK regional networks and commissioners* should: 
•
review the Epilepsy12 findings in their area and ensure there is sufficient capacity for paediatric
neurologists to provide timely assessment and ongoing management.
•
support Trusts and Health Boards to define a paediatric clinical lead for their epilepsy services.
*This may include: Mental health department leads, BPT commissioners, Paediatric epilepsy clinical lead
*This may include: Paediatric commissioners, Trust medical director and paediatric epilepsy clinical lead
* This may include: OPEN UK, Regional Network Epilepsy leads, paediatric commissioners, and regulators (including CQC)

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
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those criteria, including variation in referral rates between regions. This finding - together with the MRI 
findings - suggests there may be children with surgically treatable epilepsies who are missing out on, 
or having delayed access to, surgical evaluation and treatment.
Recommendation (6) OPEN UK regional epilepsy networks and CESS should:
•
coordinate clear, embedded referral criteria and shared care pathways from secondary care and
paediatric neurology to CESS,
•
ensure early identification of referral criteria and ensure referral to CESS where appropriate.
Key finding (H) - Sodium valproate: Sodium valproate must no longer be used in any woman or girl of 
childbearing age unless they are enrolled in the pregnancy prevention programme. The results showed 
a clear reduction in use of sodium valproate in girls compared to boys after age 9. There was good 
evidence of discussion of the associated risks.
Key finding (I) - Comprehensive care plans: The majority of Health Boards and Trusts report 
routinely undertaking comprehensive care plans for all children with epilepsy. Yet at individual level 
there were gaps in provision of essential elements including the ease of contacting services and 
guidance for water safety.
Recommendation (7) All Health Boards and Trusts should implement standardised approaches 
to care planning content, or other robust mechanisms, to ensure that essential elements of care are 
provided routinely to children with epilepsy at diagnosis and reviewed on an ongoing basis.
Education and health providers* at national, regional and local level should agree procedures 
to facilitate appropriate, up-to-date health care planning within education and two-way 
information sharing.
Key finding (J) - Transition to adult services: Over half of Health Boards and Trusts hold outpatient 
services that combine adult and paediatric professionals. For most paediatric epilepsy services there 
are no agreed pathways for children and young people to transition to adult services.
Key finding (K) - Diagnosis and Anti-Epileptic Drugs: There has been an apparent reduction in the rates 
of children misdiagnosed with epilepsy. There was very little evidence of children receiving anti-epilepsy 
medication unnecessarily. NICE’s CG 137 states that AED therapy should only be started once the diagnosis 
of epilepsy is confirmed, except in exceptional circumstances that require discussion and agreement 
between the prescriber, the specialist and the individual and their family and/or carers as appropriate.
Key finding (L) - Local and regional variation: There was marked regional variation in the socioeconomic 
distributions within the epilepsy populations. There was also regional variation in the proportion of 
children diagnosed with epilepsy as a proportion of EEGs requested.
Recommendation (8) Epilepsy12 should develop an ascertainment measure based on estimated 
population sizes and estimates of epilepsy incidence according to Health Boards and Trust. This 
would allow case ascertainment of the audit to be compared with a measure of the expected 
epilepsy incidence and variation in EEG rates. 
All Trusts and Health Boards* should ensure that epilepsy services have sufficient clinician 
time job-planned to ensure capacity to submit accurate audit data and implement quality 
improvement, in addition to clinical activities.
*This may include: OFSTED, head teachers, school nurses, paediatric epilepsy service staff, patients and their families, youth
workers, healthcare assistants, sports coaches or out of school organisations that provide activities
*This may include: Trust medical director, lead for EEG, and paediatric epilepsy clinical lead

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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).  
The RCPCH delivered Rounds 1 and 2 of Epilepsy12 between 2009 and 2015, publishing related national 
reports for each Round in 2012 and 2014 respectively.  Paediatric epilepsy was once again prioritised as 
a topic for the NCAPOP and the RCPCH was re-commissioned by HQIP to deliver Round 3 of Epilepsy12 
from 1 April 2017 to 31 March 2021.
Rounds 1 and 2 of the audit included Health Boards and Trusts across England, Northern Ireland, 
Scotland and Wales. This report covers the analysis of data collected by the audit on the organisation 
of paediatric epilepsy services within Health Boards and Trusts in England and Wales. It is hoped that 
in future, Health and Social Care Trusts in Northern Ireland and Health Boards in Scotland will also join 
Round 3 of the audit, subject to contractual and governance arrangements being put in place. 
As per Rounds 1 and 2, the work of Round 3 of the audit is overseen by a Project Board which includes 
representatives of patient and professional organisations and a dedicated project team within the 
RCPCH.
Audit aims and scope
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.3 The aim of Epilepsy12 is to help to improve 
the standard of care for children and young people with epilepsies. To be able to do this, the audit 
will collect and process patient identifiable data.  By collecting and processing such information the 
audit is able to highlight areas where hospitals and clinics are doing well, and also identify areas in 
which they need to improve.
In Round 3, Epilepsy12 has expanded the scope and aims of the audit to:
•
continue to measure and improve care and outcomes for UK children and young people with
epilepsies,
•
include all children and young people with a new onset of epilepsy,
•
enable continuous patient ascertainment,
•
use a pragmatic and concise dataset,
•
incorporate NICE Quality Standards, Mental Health, Educational and Transition metrics,
•
obtain approval to include patient identifiers to allow local real-time individual and service dashboard
elements within the audit reporting platform.
Data completeness
There were 149 registered Health Boards and Trusts in Round 3 of Epilepsy12. Eight of the registered 
Trusts merged to form four Trusts in 2019, leaving a total of 145 registered Health Boards and Trusts 
participating within the audit. The clinical audit phase began in July 2018 and focuses on performance 
indicators relating to the first paediatric assessments undertaken for children and young people who 
3	  Joint Epilepsy Council of the UK and Ireland. (2011).  Epilepsy prevalence, incidence, and other statistics.

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
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experience a paroxysmal episode or episodes (includes all epileptic or non-epileptic seizures and 
also seizures of uncertain in origin) between July 2018 – November 2018 and the first year of care that 
follows those initial assessments up until 30 November 2019. Nine of the registered Health 
Boards and Trusts did not submit a 2019 organisation report to the 2018/2019 Epilepsy12 audit 
and 36 Health Boards and Trusts were excluded within the clinical audit due to data incompleteness.
There remains considerable variation in respect to Health Boards and Trusts in England and 
Wales regarding their ability to staff, resource time within job plans, and adequate IT systems to 
collect and submit accurate and complete data to the national audit. We would like to stress the 
importance of all paediatric epilepsy services within Health Boards and Trusts being supported with 
their data submission to national clinical audits. Health Boards and Trusts can use audit data for 
benchmarking practices to identify gaps that require service improvements, share best practice and 
improve the completeness. We urge senior Health Board and Trusts management to support their 
paediatric epilepsy services to improve upon data completeness to ensure it reflects a more accurate 
picture of their standard of practice.
Audit outputs and publications
Round 3 of Epilepsy12 is comprised of three main audit domains: the organisational audit (service 
descriptor), the clinical audit (clinical care domain) and associated Health Boards and Trusts profile 
and Quality improvement (Patient reported experience measures, EQIP, children and young people’s 
engagement). The Epilepsy12 produces the following current and future reports, all of which can be 
viewed and downloaded from www.rcpch.ac.uk/epilepsy12 
•
Epilepsy12 National Organisational Audit Report 2018
•
Epilepsy12 National Organisational Audit Report 2018: Health Board and Trusts level results
•
2018 Epilepsy12 &Us - voices from the RCPCH &Us network booklet
•
A guide to the 2018 Epilepsy12 National Organisational Audit report for parents and young people
•
Epilepsy12 Combined National report 2018/19 key messages
•
Epilepsy12 National Organisational Audit Report 2019: Regional/National Results
•
Epilepsy12 National Organisational Audit Report 2019: Health Board and Trusts level Results
•
Epilepsy12 National Clinical Audit Report 2018/19: Regional/National Results
•
Epilepsy12 National Clinical Audit Report 2018/19: Health Board and Trusts level Results
•
RCPCH Epilepsy Quality Improvement Programme (EQIP): Supplement (released later this year)
•
A guide to the 2018/19 combined Epilepsy12 National Audit report for parents and young people
booklet (released later this year)
•
2018/19 combined Epilepsy12 National Audit report clinic posters (released later this year)
•
2019 Epilepsy12 &Us - voices from the RCPCH &Us network booklet (released later this year)
Quality improvement
Facilitating quality improvement activities is a core element of Epilepsy12.  The audit supports these 
activities in the following ways.
Supporting regional and national quality improvement activities
Epilepsy12 has continued to support the Organisation of Paediatric Epilepsy Networks (OPEN UK), 
hosting quarterly national meetings to help regional leads share learning and co-ordinate strategy. 

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Epilepsy12 and OPEN UK are working together to highlight the importance of appropriate resources for 
paediatric epilepsy networks, identify opportunities for regional QI activities, and share learning across 
the whole OPEN UK network.
The second Epilepsy12 & OPEN UK National Conference took place on 17 June 2019.  More than 160 
health 
professionals 
working 
in 
support 
of 
paediatric 
epilepsy 
services 
and 
patient 
organisation representatives came together with the aim of learning from each other and improving 
care for all children and young people with epilepsies. The conference was chaired by Dr Sophia 
Varadkar, Consultant Paediatric Neurologist & Chief of Service for Brain Directorate, GOSH and 
included a young people-led symposium, keynote speaker and related Q&A session, Epilepsy12 
updates and a quality improvement (QI) showcase session with associated QI poster displays. The 
conference also marked the launch of the RCPCH Epilepsy Quality Improvement Programme (EQIP). 
Copies of the presentations delivered on the day can be viewed via the project website: 
www.rcpch.ac.uk/epilepsy12  
Epilepsy12 audit data was linked with Office of National Statistics and NHS datasets in recently published 
research.4  The study examined whether there were associations between quality of paediatric 
care, hospital admissions, and all-cause deaths among epilepsy patients. The authors report 
that for adolescents with epilepsy, greater involvement of tertiary specialists in paediatric care was 
associated with decreased mortality after transition to adult services. Reduced access to an 
epilepsy specialist nurse was associated with an increase in paediatric epilepsy hospital admissions.
Epilepsy Quality Improvement Programme (EQIP)
The RCPCH EQIP launched on 17 June 2019 and has been designed as a model for a 
comprehensive quality improvement programme, tailored to support paediatric epilepsy teams to 
work together to define their shared aims and identify current gaps in service provision. This pilot 
programme will run for six months. The programme launched with a weekend training residential 
event taking place on 16/17 November 2019 and a follow up event of shared learning in July 2020. 
See chapter 5 for more information on the programme and visit the project website for updated 
information on the teams’ journeys via www.rcpch.ac.uk/eqip . 
Children and young people engagement
The Epilepsy12 Youth Advocates have been developing a new quality improvement project relating 
to “Clinic Checks”. A pilot has been taking place in paediatric epilepsy services across England and 
Wales to assess the support that they provide to young people for their anxieties and worries. See 
chapter 4 for more information on the Youth Advocates.    
Audit methodology and dataset development
The Epilepsy12 Methodology and Dataset Group was established in April 2017 and tasked with 
the development of the methodology and related datasets for both the clinical and organisational 
audit phases of Round 3 of Epilepsy12.  The development of the methodology and datasets was broken 
down into separate work streams which covered different aspects of paediatric epilepsy care. 
4	 Hargreaves, D S. et al. (2019) Association of quality of paediatric epilepsy care with mortality and unplanned hospital 
admissions among children and young people with epilepsy in England: a national longitudinal data linkage study. Lancet 
Child Adolesc Health. 3(9):627-635

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
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Audit measures were subsequently developed which aligned to:
•
Epilepsies: diagnosis and management (2012) NICE guideline CG137,
•
Epilepsy in children and young people (2013): NICE Quality Standard 27.
Members of the Epilepsy12 project Board reviewed and signed off the Epilepsy12 Round 3 methodology 
and dataset in September 2017.
Data entry
The Epilepsy12 Round 3 data platform was configured to allow the registered Health Boards and 
Trusts and EEG services to register and complete the clinical and organisational audits. 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 three cohorts. The first cohort is defined by patients 
with a first paediatric assessment for a paroxysmal episode (or episodes) between the “Go live” date 
(12 July 2018) and 30 November 2018. The first year of care data entry timeframe is 12 July 2018 to 30 
November 2019. The organisational audit focuses on services and workforce at Trust and Health Board 
level at a designated point in time, this report presents organisational data from November 2019. 
Using the Epilepsy12 platform EEG services can register patients that have been referred for their first 
EEG for a paroxysmal episode. Designated leads and Health Board/Trust staff members were able to 
edit and update their data entry up until 31 December 2019, by which time they had to formally submit 
and lock their assessment and first year of care data in order for it to be included in the final data 
download for analysis by the Epilepsy12 project team. 
Analysis and identification of key findings and recommendations
The Epilepsy12 project team downloaded all submitted and locked clinical and organisational audit 
data from participating Health Boards and Trusts in January 2020. Members of the Epilepsy12 
project board and methodology and dataset group then met to review the analysis of submitted 
data and agree key findings and recommendations for the report.
Managing small numbers 
The Epilepsy12 measures and results have been reviewed to manage the risk of disclosure of protected 
information about individuals included in the audit data (or those connected to them). This was 
assessed on a case-by-case basis, and at points in this report results with small numbers have been 
masked. Masked results have been marked with an asterisk (*) and footnoted. 

16
2. Themes and recommendations
Clinical audit 2018-2019 results
The clinical audit phase of Epilepsy12 began in July 2018. It focuses on performance indicators 
relating to the first paediatric assessments undertaken for children and young people who 
experience a paroxysmal episode (or episodes) between July 2018 – November 2018 and the first year 
of care that follows those initial assessments up until 30 November 2019. This national report includes 
the analysis of data from the first cohort of patients from Round 3 clinical audit phase. The 
performance indicators align with NICE Guidelines and Quality Standards5 and cover the following 
areas:
•
input from a paediatrician with expertise in epilepsies
•
input from an epilepsy specialist nurse
•
tertiary input
•
epilepsy surgery referral
•
appropriate first paediatric assessment
•
seizure formulation
•
access to electrocardiogram (ECG)
•
access to magnetic resonance imaging (MRI)
•
accuracy of diagnosis
•
discussion of the risks of treatment with sodium valproate
•
comprehensive care planning agreement and content
•
school individual healthcare plans.
The Epilepsy12 data platform allows participating Health Boards and Trusts to enter data on the care 
that they provide to children and young people for the clinical audit phase and view real time outputs 
including individual patient timeline and care planning reports and a performance indicator dashboard.
Full details of the Epilepsy12 Round 3 performance indicators can be viewed on the Epilepsy12 website.
Organisational audit 2019 results
Epilepsy12 brings together a multidisciplinary group of representatives to highlight key findings and 
results and translate these into a set of recommendations that can be acted upon to improve paediatric 
epilepsy care. The Epilepsy12 audit of the organisation of paediatric services in England and Wales 
covered the following areas:
•
workforce
•
epilepsy clinic configuration
•
tertiary provision
•
investigations
•
service contact
•
young people and transition
•
mental health provision
•
neurodevelopmental support
•
care planning
•
patient databases or registers.
5	 NICE (2012) Clinical Guideline 137 - Epilepsies: diagnosis and management
NICE  (2013) Quality Standard 27   - Epilepsy in children and Young People

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
17
General and specific recommendations are made to support the existing goals and priorities of 
paediatric epilepsy services and regional networks, and are targeted to those with the ability to action 
the recommendation.
Full details of the Epilepsy12 Organisational audit indicators can be viewed on the Epilepsy12 website.
Combined key findings and recommendations
The clinical audit covers from the first paediatric assessments undertaken for children and young 
people who experience a paroxysmal episode (or episodes), to a record of care for the next 12 months. 
The organisational audit supplements this data with insight into the provision of staff and service 
availability in each Health Board and Trust. 
Within the clinical audit, there are 12 measures which were derived from national guidelines and 
recommendations. These are referred to as the ‘Performance Indicators’ in the full results presented 
in Appendices A and G. The chart below summarises the results for these 12 measures, showing 
where care met the required standards for children and young people in Round 3, cohort 1. There 
are some very positive results. Children and young people with epilepsy are receiving care from 
specialist paediatricians and nurses, and they are being correctly diagnosed. There is, however, scope 
for improvement in aspects including comprehensive care planning and referral to epilepsy surgery 
services where children and young people meet relevant criteria.
The performance indicators shown in Figure 1 provide an overview of important aspects of care. The 
key findings and recommendations presented in the next section go beyond this, drawing on the full 
sets of results from the clinical and organisational audits. Due to this, the key finding sections, and 
numbering of recommendations, do not directly match those of the 12 performance indicators. 
Detailed results from the clinical and organisational data are available in Appendices A and G. This 
includes the results for each measure and analysis by country and regional epilepsy network areas. 
Comparisons with previous rounds of the audits are made where available. 
32.2%
70.1%
62.4%
39.7%
100.0%
97.2%
68.6%
67.6%
88.0%
61.6%
30.0%
59.3%
69.0%
87.9%
0%
10% 20% 30% 40% 50% 60% 70% 80% 90% 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 Formulaon:
4. Appropriate ﬁrst paediatric assessment:
3b. Epilepsy Surgery referral:
3. Terary involvement:
2. Epilepsy nurse specialist:
1. Paediatrician with experse:
England and Wales
Figure 1: Epilepsy12 Performance indicators in England and Wales, Round 3 Cohort 1 

18
Key finding A: First EEG waiting times
First EEG waiting times
43.8% (487/1112) children and young 
people diagnosed with epilepsy obtained 
their EEG more than 4 weeks on from
the initial referral request.
EEG
request
made
43.8%
An electroencephalogram (EEG) is a recording of brain 
activity. During the test, small sensors are attached to the 
scalp to pick up the electrical signals produced when brain 
cells send messages to each other.
Almost half of children with an epilepsy had to wait more 
than 4 weeks for their first EEG from the time of request. 
NICE guidelines (Quality Statement 2) state that children 
and young people having initial investigations for epilepsy 
undergo the tests within 4 weeks of being requested.
•
43.8% (487/1112) children and young people diagnosed with epilepsy obtained their EEG more
than 4 weeks on from the initial referral request.
Recommendation 1
All Health Boards and Trusts* should:
•
review and improve their referral pathways to ensure all first EEGs are achieved within
a maximum of 4 weeks of request date.
Health Boards and Trusts with EEG services should:
•
co-ordinate with their commissioners and regional OPEN UK network to ensure timely
access to EEG services for all relevant Trusts and Health Boards.
*This may include: Trust Medical director and Paediatric epilepsy clinical lead

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
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Key finding B: ECG and MRI investigations
Magnetic resonance imaging (MRI) is a type of scan that uses strong magnetic fields and radio waves 
to produce detailed images of the inside of the body.  An electrocardiogram (or 12-lead ECG) gathers 
information from 12 different areas of the heart. 
The Epilepsy12 performance indicator is based on SIGN guidance and current British Paediatric 
Neurology Association (BPNA), Paediatric Epilepsy Training (PET) curriculum. This states that all children 
with a convulsive seizure should have a 12-lead ECG.
•
68.6% (317/462) children and young people diagnosed with epilepsy and who met the defined
indications for an MRI, had received an MRI during their first year of care.
•
67.6% (474/701) children and young people diagnosed with epilepsy and who had convulsive
seizures obtained a 12 lead ECG during their first year of care.
•
Previously, 63.5% (Round 1, 2012) and 72.2% (Round 2, 2014) of children and young people who
met the defined indications had received an MRI. In earlier rounds investigations by 12-lead
ECG were reported for all children with epilepsy.
Recommendation 2
All Health Boards and Trusts* should:
•
ensure that they can provide MRI to children of all ages via a sedation and/or
anaesthetic pathway,
•
document within medical records and Epilepsy12 audit the confirmed epilepsy
syndrome diagnosis (including BECTS, CAE, JAE, JME and ‘epilepsy with generalised
tonic clonic seizures only’) as MRI is not routinely indicated for these children,
•
review local pathways to include routine 12-lead ECG for children with convulsive
seizures,
•
ensure 12- lead ECG results are accessible within the ongoing clinic health records.
*This may include: Department leads at MRI, EEG services within Trusts or Health Boards, paediatric epilepsy
services/ teams

20
Key finding C: Mental health provision
Mental Health diagnosis
and provision
6.1% (43/701) of children and young people 
between the age of 5-15 years and diagnosed 
with epilepsy had a mental health problem 
identified by the end of their first 
year of care. 
6.1%
Mental health diagnoses and evidence of involvement of 
mental health professionals was very low, considering the 
rates of mental health diagnoses in children with epilepsy 
evidenced in research.
NHS Best Practice Criteria (2019) states that there should be 
some co-located mental health provision within epilepsy 
clinics. Few services have co-located services, and in 
addition only a small number of Health Boards and Trusts 
report routinely screening young people for mental health 
conditions. 
•
6.1% (43/701) of children and young people between the age of 5-15 years and diagnosed with
epilepsy in cohort 1 had an identified mental health condition by year one in England and
Wales.
•
4.1% (45/1112) of children and young people with epilepsy had some evidence of involvement of
a mental health professional or service by the end of their first year of care.
•
However, a study of mental health in children with epilepsy (Dev Med Child Neurol. 2003)
reported a much higher incidence where 37% of 5-15 year olds with epilepsy had a co-existing
mental health disorder.
•
14.0% (19/136) Health Boards and Trusts were able to facilitate mental health provision within
epilepsy clinics.
•
14.7% (20/136) of Health Boards and Trusts routinely provided formal screening services for
mental health disorders, a decrease from 19.6% (29/148) in 2018.
Recommendation 3
Commissioners, Health Boards and Trusts* should ensure that:
•
all children with an epilepsy should have ongoing screening for a range of mental
health problems using a validated tool (e.g. Strengths and Difficulties Questionnaire),
•
where there are concerns about mental health problems the child or young person
should be referred to an appropriate mental health service via an agreed pathway for
ongoing diagnosis and treatment,
•
services for children and young people with epilepsy should include sufficient
integrated mental health provision, some of which should be co-located within the
epilepsy clinic.
*This may include: Mental health department leads, BPT commissioners, Paediatric epilepsy clinical lead

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
21
Support for worries and anxieties 
Epilepsy12 Youth Advocates selected ‘support for worries and 
anxieties’, ‘face to face support’, and ‘school’ as their three 
priority areas. 
The areas were chosen after consultation with other children and young people, 
published in Epilepsy12 &Us - Voices from the RCPCH &Us network (January 2019). 
Children and young people wanted more support in helping to explain questions such 
as “why me? when will it stop?”. They asked for help to establish coping strategies for 
themselves and their families.
P
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Key finding D: Epilepsy Specialist Nurses
Epilepsy Specialist Nurse
69.0% (767/1112) of children and young people 
diagnosed with epilepsy had input from an 
epilepsy specialist nurse (ESN) by one year.
Epilepsy
Specialist
Nurse
69.0%
There is evidence of an increasing epilepsy specialist nurse (ESN) workforce and more widespread 
involvement within the first year. There remains some Health Boards and Trusts where ESN involvement 
is absent or insufficient. This positive development is alongside encouraging increases in contact with 
specialists and fewer withdrawals of epilepsy diagnoses. NICE Clinical Guideline 137 highlights the need 
for ESN to be part of the network of care in epilepsy, and in SIGN Guidance each epilepsy team should 
include paediatric epilepsy nurse specialists.
•
69.0% (767/1112) of children and young people diagnosed with epilepsy had input from an epilepsy
specialist nurse during their first year of care.
•
95.6% (130/136) of Health Boards and Trusts described advice available between scheduled
reviews. However, 47.7% (62/130) of Health Boards and Trusts reported typical response times of
three or more days.
•
In 2019 there was a total of 158.4 WTE epilepsy specialist nurses (ESN) employed in participating
Health Boards and Trusts across England and Wales.
•
81.6% (111/136) of Health Boards and Trusts employed some ESN time.
Drawing together the findings from both the clinical and organisational audit data, there was a correlation 
between having ESNs as part of the local workforce and some positive clinical indicators. In Health Boards 
and Trusts that employed some ESN time, children and young people with epilepsy were more likely to:
•
be seen by an epilepsy specialist nurse,
•
have school Individual Healthcare Plan,
•
have an MRI.
Recommendation 4
Epilepsy Specialist Nurses provide a wide-ranging contribution to the care of the child and 
roles should take account of local populations and service configurations.
All Health Boards and Trusts* should employ sufficient ESNs to ensure at least 1 WTE ESN 
for every 250 children with epilepsy.  This is so that families, alongside other ESN roles, can 
reliably receive direct individualised specialist advice by the same or next working day 
between scheduled reviews.
*This may include: Paediatric commissioners, Trust Medical director and Paediatric epilepsy clinical lead
Providing specialist advice
47.7% (62/130) of Health boards/Trusts 
reported typical response times for  
specialist advice of 3 or more days.
47.7%
3+ 
DAYS

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
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Key finding E: Specialist paediatricians and clinical leads
Paediatrician with 
Epilepsy Expertise
15.5% (172/1112) of children and young people 
diagnosed with epilepsy were seen by a 
‘paediatrician with expertise in epilepsy’ 
within 2 weeks of their first referral 
in England and Wales.
15.5%
Within 2
WEEKS
Consultant 
Paediatrician
Paediatric Epilepsy 
Clinical Lead
11.8% (16/136) of Health Boards/Trusts do 
not have  a defined paediatric epilepsy 
clinical lead.
CV
Paediatric Epilepsy 
Clinical Lead
11.8%
Paediatric 
Epilepsy 
Lead 
Direct referrals to
Paediatric Neurologists
23.5% (32/136) of Health Boards/Trusts reported that 
paediatric neurologists could receive 
direct referrals from general practice 
or emergency services to assess 
children with possible epilepsy.
23.5%
Paediatric
Neurologist
DIRECT
REFERRAL
GP SURGERY
There is evidence of increasing paediatrician with 
expertise involvement within the first year, although 
access to paediatric neurology where indicated remains 
static. While children with epilepsy received specialist 
input during the first year of care, there was evidence 
that in many cases there were waits for input beyond the 
2 weeks from presentation that is recommended in NICE 
guidelines (NG137 and NICE QS1).  
The neurology services provide specialist input into 
paediatric epilepsy care across England and Wales. Where 
neurology services are setup to accept direct referrals 
from general practice and emergency departments this 
will contribute significant additional new patient and 
follow up activity, some of which could otherwise be 
managed by general paediatric services.  This pathway 
configuration should have ongoing review by the Trust/
Health board and commissioners to ensure adequate 
workforce, value and service capacity for both the patients 
with seizures and also other children needing paediatric 
neurology input.
•
11.8% (16/136) of Health Boards and Trusts do not have a defined paediatric epilepsy clinical
lead.
•
In Round 3, cohort 1, 15.5% (172/1112) children and young people diagnosed with epilepsy were
seen by a ‘paediatrician with expertise in epilepsy’ within 2 weeks of first referral in England
and Wales.
•
23.5% (32/136) of Health Boards and Trusts reported that paediatric neurologists could receive
direct referrals from general practice or emergency services to assess children with possible
epilepsy.
•
82.3% (915/1112) of the children and young people diagnosed with epilepsy had input from a
paediatrician with expertise in epilepsies in England and Wales in year one. This was similar
to Round 2, 86.1% (938/1090).

24
•
In Round 3 cohort 1, 59.3% (150/253) of children and young people who met paediatric neurology
referral criteria had paediatric neurologist input or Children’s Epilepsy Surgical Service (CESS)
referral by one year of care.
•
92.6% (126/136) of Health Boards and Trusts had agreed referral pathway to tertiary paediatric
neurology services.
We repeat our previous recommendation that:
“All Health Boards and Trusts should ensure they have sufficient defined general paediatricians 
with expertise in epilepsies to correctly diagnose epilepsy and provide appropriate ongoing 
management for all children with epilepsy. 
Children with ‘complex epilepsy’ should also have evidence of input from a paediatric 
neurologist.”
Recommendation 5
All OPEN UK regional networks and commissioners* should:
•
review the Epilepsy12 findings in their area and ensure there is sufficient capacity for
paediatric neurologists to provide timely assessment and ongoing management,
•
support Trusts and Health Boards to define a paediatric clinical lead for their
epilepsy services.
* This may include: OPEN UK, Regional Network Epilepsy leads, paediatric commissioners, and regulators
(including CQC)
Key finding F: Best Practice Criteria for clinics
There are few Trusts and Health Boards able to provide, or working towards, clinics for paediatric 
epilepsy which meet the Best Practice Criteria (BPC). There has been a slight increase between 
April 2018 and November 2019. 
•
46.6% (61/131) of Health Boards and Trusts hold clinics that meet the BPC, and a further 26.0%
(34/131) are developing towards this standard.

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
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Key finding G: Children’s Epilepsy Surgical Service (CESS)
Children’s Epilepsy
Surgical Service (CESS)
30.3% (27/89) of the children and young 
people who met CESS referral criteria 
had CESS referral by one year.
CESS Referral Criteria
30.3%
There is evidence that many children who meet CESS referral 
criteria are not being referred according to those criteria, 
including variation in referral rates between regions. This 
finding together with the MRI performance indicators 
suggests there may be children with surgically treatable 
epilepsies who are missing out on or having delayed surgical 
evaluation and treatment.
•
30.3% (27/89) of the children and young people who met CESS referral criteria had CESS referral
by one year.
•
In Round 3, 8.0% (89/1112) of the children and young people diagnosed with epilepsy met one
or more of the CESS referral criteria in England and Wales.
Recommendation 6
OPEN UK regional epilepsy networks and CESS should:
•
coordinate clear, embedded referral criteria and shared care pathways from
secondary care and paediatric neurology to CESS,
•
ensure early identification of referral criteria and ensure referral to CESS where
appropriate.

26
Key finding H: Sodium valproate
Sodium Valproate
A total of 305 children and young people (242 male, 
63 female) with epilepsy were commenced on 
sodium valproate during their first year of care. 
The associated risks had been discussed 
with all the girls who were aged 9 
and above. 
242
MALE
63
FEMALE
Sodium valproate must no longer be used in any woman 
or girl of childbearing age unless they are enrolled in the 
pregnancy prevention programme. This is designed to 
ensure patients are fully aware of the risks and the need to 
avoid becoming pregnant (MHRA 2018).  From 9 years old 
there was a clear trend in reduced prescribing of sodium 
valproate for girls in cohort 1. There was good evidence of 
discussion of the associated risks. 
• A total of 305 children and young people (63 female, 242 male) with epilepsy were commenced
on sodium valproate during their first year of care.
• There were fewer than 5 females with epilepsy who were 9 years or over and prescribed sodium
valproate. All had evidence of discussion of the risks of pregnancy regarding birth defects and/
or neurodevelopmental outcomes.

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
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Key finding I: Comprehensive care plans
Care planning key contents
62.4% (694/1112) of children and young 
people with epilepsy had evidence of 
an agreed comprehensive care plan 
after 12 months.
62.4%
HEALTHCARE 
PLAN
Children and young people with epilepsy should have an 
agreed and comprehensive clinical care plan (NICE QS4). 
The evidence suggests that there are inconsistencies in the 
delivery of core care planning components. The majority 
of Health Boards and Trusts report routinely undertaking 
comprehensive care plans for all children with epilepsy, yet 
at individual level there were gaps in provision of essential 
elements including relating to ‘contact-ability’ of services 
and guidance for water safety.
• 62.4% (694/1112) of children and young people with epilepsy had evidence after 12 months of an
agreed comprehensive care plan.
• 80.1% (109/136) of Health Boards and Trusts report ‘routinely undertaking comprehensive care
plans for children with epilepsy’.
• 70.1% (779/1112) of children and young people diagnosed with epilepsy had documented evidence 
of appropriate core content.
• 79.7% (886/1112) of children and young people diagnosed with epilepsy had evidence of discussion 
regarding water safety.
• 79.7% (886/1112) of children and young people diagnosed with epilepsy were provided service
contact by Health Boards and Trusts.
• 88.5% (193/218) of children and young people diagnosed with epilepsy and on rescue medication
had a parental prolonged seizure care plan.
• 42.6% (474/1112) of children and young people diagnosed with epilepsy had evidence of information 
on Sudden Unexpected Death in Epilepsy (SUDEP), with noticeable regional variation.
School Individual
Healthcare Plans
32.2% (231/717) of children and young people 
diagnosed with epilepsy aged five years and 
above had evidence of a school individual 
healthcare plan by one year.
32.2%
SCHOOL INDIVIDUAL 
HEALTHCARE PLAN
Teacher
There also appears to be a disconnect between care 
planning by epilepsy services and education. For 
cohort 1, clinicians had evidence that 32.2% (231/717) of 
school-age children and young people with epilepsy 
had an Individual Healthcare Plan (IHP) at school. In 
contrast Epilepsy Support in Schools (Young Epilepsy, 
2019), a survey of 356 children with epilepsy, reports 
that 37% did not have an IHP at school.

28
Recommendation 7
•
All Health Boards and Trusts* should implement standardised approaches to care
planning content, or other robust mechanisms, to ensure that essential elements of
care are provided routinely to children with epilepsy at diagnosis and reviewed on an
ongoing basis.
•
Education and health providers* at national, regional and local level should
agree procedures to facilitate appropriate, up-to-date health care planning within
education and two-way information sharing.
*This may include: OFSTED, School head teachers, School nurse, paediatric epilepsy service staff, patients
and their families, Youth workers, Healthcare assistants, Sports coaches or out of school organisations that
provide activities

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
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Key finding J: Transition to adult services
Transition
In the 2019 Organisational Audit; 55.9% (76/136) 
of Health Boards and Trusts reported having
an outpatient service for epilepsy where 
there is a presence of both adult 
and paediatric professionals. 
ADULT
EPILEPSY 
SERVICE
55.9%
OUTPATIENT 
SERVICE
Over half of Health Boards and Trusts hold outpatient 
services that combine adult and paediatric professionals. 
In almost four fifths of paediatric epilepsy services there 
are no agreed pathways for children and young people to 
transition to adult services, and where these pathways are in 
place this often constitutes a single joint meeting between 
the child or young person and both adult and paediatric 
services. In general, the child or young person receives 
input during their transition from an adult neurologist 
with input from an adult ESN being less common.
• In the 2019 Organisational Audit; 55.9% (76/136) of Health Boards and Trusts reported having
an outpatient service for epilepsy where there is a presence of both adult and paediatric
professionals.
• When transferring young people to adult services, 53.9% (41/76) of Health Boards and Trusts
report holding a single joint appointment with the adult service.
• 20.6% (28/136) of Health Boards and Trusts had agreed referral pathways for young people to
adult services.
• 83.8% (114/136) of Health Boards and Trusts had an adult neurologist supporting transition to
adult services.
• 54.4% (74/136) of Health Boards and Trusts had an adult Epilepsy Specialist Nurse (ESN)
supporting transition to adult services.
We repeat our previous recommendations:
“Health Boards and Trusts should formally agree transition pathways from paediatric to adult 
services. Local arrangements should define how this is achieved for different young people with 
epilepsies with different associated problems, for example children and young people with an 
intellectual disability or neuro-disability. 
Health Boards and Trusts should establish secondary tier clinics specifically for young people 
with epilepsies. This should support the evolving needs of the young person and their family 
throughout adolescence as well as during handover to adult services.” 

30
Key finding K: Diagnosis and Anti-Epileptic Drugs
Diagnosis and misdiagnosis
97.2% (1093/1124) of children and young 
people had a maintained diagnosis 
of epilepsy by one year.
INITIAL
EPILEPSY
DIAGNOSIS
YEAR 1
DIAGNOSIS
97.2%
There has been an apparent reduction in the rates of children 
misdiagnosed with epilepsy. There was very little evidence 
of children receiving anti-epilepsy medication unnecessarily. 
In NICE’s CG 137, AED therapy should only be started once 
the diagnosis of epilepsy is confirmed, except in exceptional 
circumstances that require discussion and agreement 
between the prescriber, the specialist and the individual 
and their family and/or carers as appropriate.
• 97.2% (1093/1124) of children and young people had a maintained diagnosis of epilepsy by one
year.
• 36.8% (50/136) of Health Boards and Trusts have a specific outpatient clinic for young people
with epilepsy.
• 1.5% (13/856) of children and young people receiving epilepsy medication did not have a diagnosis 
of epilepsy at 1 year.

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
31
Key finding L: Local and regional variation in Epilepsy12
There is variability in both the levels of engagement and performance at local Health Board and Trust 
and regional (OPEN UK) paediatric epilepsy network levels. In 2020, there are emerging structures of 
resourcing, support and leadership for regional and local commissioning which will need to link in 
effectively with OPEN UK paediatric epilepsy networks in future.
There was marked regional variation in the socioeconomic distributions within the epilepsy populations. 
There was also regional variation in the proportion of children diagnosed with epilepsy as a proportion 
of EEGs requested.
• 127 out of 136 Health Boards and Trusts submitted and locked the data describing their
organisation and services in November 2019.
• 113 out of 149 Health Boards and Trusts submitted a record of the first year of care clinical data
for one or more children and young people in cohort 1.
We repeat a recommendation from the 2018 organisational audit results, which should now be updated 
to include the emerging commissioning structures:
“Regional (OPEN UK) paediatric epilepsy networks and commissioners should:
•
review Epilepsy12 results for their respective region(s) and associated Health Boards and
Trusts,
•
support the development of local or regional quality improvement initiatives and knowledge
sharing,
•
build links between those with commissioning, clinical and provider roles (including the
Integrated Care Systems, STPs and NHS regional leadership).”
Recommendation 8
Epilepsy12 should develop an ascertainment measure based on estimated population 
sizes and estimates of epilepsy incidence according to Trust/Health Boards. This would 
allow case ascertainment of the audit to be compared with a measure of the expected 
epilepsy incidence and variation in EEG rates. 
All Health Boards and Trusts* should ensure that epilepsy services have sufficient 
clinician time job-planned to ensure capacity to submit accurate audit data and 
implement quality improvement, in addition to clinical activities.
*This may include: Trust Medical director, lead for EEG, and Paediatric epilepsy clinical lead

32
Epilepsy12 Youth Advocates
P
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V
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The Epilepsy12 Youth Advocates used their learning and work around the 
Clinic Chat Checklist to review the findings from the clinical and 
organisational audits. They have shared their ideas which link the key 
findings with their priority area of “support with worries and anxieties”.
Report topic
What would good “support with worries and anxieties” look 
like for this topic?
Mental health 
diagnosis and 
provision
Work with patients and families to:
•
understand their worries and anxieties around living with epilepsy,
•
be flexible in your support and approach so it changes with the age and
needs of the patient,
•
check back in with patients to give feedback on services or support they
might need.
Care planning 
key contents
Identify the key services within your Trust and Health Board, and work with them 
to input into your clinics and care plans:
•
access to play specialists, youth workers, and advocates,
•
wellbeing passports or ‘quick access’ cards,
•
involve your NHS Accessible Information Standards lead and aim to meet
the best practice guidance,
•
input from the LLDD team and look at the NHS England Ask, Listen, Do for
best practices.
Epilepsy 
specialist 
nurses
Develop information that can be shared with patients and families that helps 
them to know:
•
what they need to know or think about in their first month, sixth month, and
first year after being diagnosed with epilepsy,
•
who is in the Epilepsy Service and how to get in touch with them,
•
what other support or services are available, and how to contact them
(remember to include: mental health support, exam support, play specialists),
•
what to do if you are worried out of hours,
•
what support is offered by an Epilepsy Specialist Nurse (or plans to develop
this role if not in place).
Summary of Recommendations
The Epilepsy12 2020 National Audit Report makes a number of key recommendations of 
how to address the issues identified within the 2018-19 clinical and 2019 organisational 
audit key findings and results of the audit. The tables on the following pages group the 
key recommendations by:
•
the related guidelines or standards
•
the relevant audit findings
•
comparison to previous audit round findings (where valid)
•
the recommendation target audience
•
the intended outcome of the recommendation.

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
33
1.
First EEG waiting times
Recommendation
All Health Boards and Trusts should review and improve their referral pathways 
to ensure all first EEGs are achieved within a maximum of 4 weeks of request 
date.
Health Boards and Trusts with EEG services should co-ordinate with their 
commissioners and regional OPEN UK network to ensure timely access to EEG 
services for all relevant Trusts and Health Boards.
Source
NICE guidelines (Quality Statement 2):
Children and young people having initial investigations for epilepsy undergo 
the tests within 4 weeks of being requested.
Epilepsy12 Key 
finding(s) and 
comparison to 
previous findings 
43.8% (487/1112) children and young people diagnosed with epilepsy obtained 
their EEG more than 4 weeks from referral request.
Target 
audience(s)
Health Boards and Trusts - Trust medical director and paediatric 
epilepsy clinical lead
EEG services
2. ECG and MRI investigations
Recommendation
Health Boards and Trusts should:
•
ensure that they can provide MRI to children of all ages via a sedation and/
or anaesthetic pathway,
•
document within medical records and Epilepsy12 audit the confirmed
epilepsy syndrome diagnosis (including BECTS, CAE, JAE, JME and ‘epilepsy
with generalised tonic clonic seizures only’) as MRI is not routinely indicated
for these children,
•
review local pathways to include routine 12-lead ECG for children with
convulsive seizures,
•
ensure 12- lead ECG results are accessible within the ongoing clinic health
records.
Source
SIGN guidance, and current British Paediatric Neurology Association (BPNA) 
PET teaching curriculum, states that all children with a convulsive seizure 
should have a 12-lead ECG.
Epilepsy12 Key 
finding(s) and 
comparison to 
previous findings 
68.6% (317/462) children and young people diagnosed with epilepsy and who 
met the defined indications for an MRI, had received an MRI during their first 
year of care.
67.6% (474/701) children and young people diagnosed with epilepsy and who 
had convulsive seizures obtained a 12 lead ECG during their first year of care. 
Previously, 63.5% (Round 1, 2012) and 72.2% (Round 2, 2014) of children and 
young people who met the defined indications had received an MRI. In earlier 
rounds investigations by 12-lead ECG were reported for all children with 
epilepsy.
Target 
audience(s)
Health Boards and Trusts - Department leads at MRI, EEG services within Trusts 
or Health Boards, paediatric epilepsy services/ teams

34
3. Mental health
Recommendation
Commissioners, Health Boards and Trusts should ensure that:
•
all children with an epilepsy should have ongoing screening for a range
of mental health problems using a validated tool (e.g. Strengths and
Difficulties Questionnaire),
•
where there are concerns about mental health problems the child and
young person should be referred to an appropriate mental health service
via an agreed pathway for ongoing diagnosis and treatment,
•
services for children and young people with epilepsy should include
sufficient integrated mental health provision, some of which should be co-
located within the epilepsy clinic.
Source
NHS Best Practice Criteria (2019) states that there should be some co-located 
mental health provision within epilepsy clinics.
Epilepsy12 Youth Advocates selected ‘support for worries and anxieties’, ‘face to 
face support’, and ‘school’ as their three priority areas.
A study of mental health problems in children with epilepsy (Dev Med Child 
Neurol. 2003) reported a much higher incidence where 37% of 5-15 year olds 
with epilepsy had a co-existing mental health disorder.
Epilepsy12 Key 
finding(s) and 
comparison to 
previous findings 
4.1% (45/1112) of children and young people with epilepsy had some evidence 
of involvement of a mental health professional or service by the end of their 
first year of care. 
6.1% (43/701) of children and young people between the age of 5-15 years and 
diagnosed with epilepsy in cohort 1 had an identified mental health problem 
by 1 year in England and Wales. 
14.0% (19/136 ) Health Boards and Trusts were able to facilitate mental health 
provision within epilepsy clinics.
14.7% (20/136) of Health Boards and Trusts routinely provided formal screening 
services for mental health disorders, a decrease from 19.6% in 2018.
Target 
audience(s)
Commissioners, Health Boards and Trusts - Mental health department 
leads, BPT commissioners, paediatric epilepsy clinical lead

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
35
4. Epilepsy Specialist Nurses
Recommendation
•
Epilepsy Specialist Nurses provide a wide-ranging contribution to the care
of the child and roles should take account of local populations and service
configurations.
•
All Health Boards and Trusts should employ sufficient ESNs to ensure
at least 1 WTE ESN for every 250 children with epilepsy.  This is so that
families, alongside other ESN roles, can reliably receive direct individualised
specialist advice by the same or next working day between scheduled
reviews.
Source
NICE Clinical guidelines 137: Epilepsy specialist nurses (ESNs) should be an inte­
gral part of the network of care of individuals with epilepsy.
SIGN guidance ‘Epilepsies: Diagnosis and Management’: Each epilepsy team 
should include paediatric epilepsy nurse specialists.
Epilepsy12 Key 
finding(s) and 
comparison to 
previous findings 
In 2019 there was a total of 158.4 WTE epilepsy specialist nurses (ESN) employed 
in participating Trusts and Health Boards across England and Wales.
95.6% (130/136) of Trusts and Health Boards described advice available between 
scheduled reviews. 
47.7% (62/130) of Trusts and Health Boards reported typical response times of 3 
or more days.
81.6% (111/136) of Trusts and Health Boards employed some ESN time.
In Round 3 cohort 1, 69.0% (767/1112) of children and young people diagnosed 
with epilepsy had input from an epilepsy specialist nurse during their first year 
of care.
Target 
audience(s)
Health Boards and Trusts  - Paediatric commissioners, Trust medical 
director and paediatric epilepsy clinical lead

36
5. Specialist paediatricians and clinical leads
Recommendation
All OPEN UK regional networks and commissioners should:
•
review the Epilepsy12 findings in their area and ensure there is sufficient
capacity for paediatric neurologists to provide timely assessment and
ongoing management.
•
support Trusts and Health Boards to define a paediatric clinical lead for
their epilepsy services.
Source
NICE CG137 and NICE QS1 state that children and young people presenting 
with a suspected seizure are seen by a specialist in the diagnosis and 
manage-ment of the epilepsies within two weeks of presentation.
Epilepsy12 Key 
finding(s) and 
comparison to 
previous findings 
82.3% (915/1112) of the children and young people diagnosed with epilepsy had 
an input from a paediatrician with expertise in epilepsies in England and Wales 
in year one. This was similar to Round 2 (85%, 938/1090).
In Round 3, cohort 1, 15.5% (172/1112) children and young people diagnosed 
with epilepsy were seen by a ‘paediatrician with expertise in epilepsy’ within 2 
weeks of first referral in England and Wales 
In Round 3 cohort 1, 59.3% (150/253) of children and young people who met 
paediatric neurology referral criteria had paediatric neurologist input or 
Children’s Epilepsy Surgical service (CESS) referral by one year of care.
11.8% (16/136) of Health Boards and Trusts do not have a defined paediatric 
epilepsy clinical lead. 
92.6% (126/136) of Health Boards and Trusts had agreed referral pathway to 
tertiary paediatric neurology services. 
23.5% (32/136) of Health Boards and Trusts reported that paediatric neurologists 
could receive direct referrals from general practice or emergency services to 
assess children with possible epilepsy.
Target 
audience(s)
OPEN UK , Regional Network epilepsy leads, paediatric commissioners, 
and regulators (including CQC)

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
37
6. Children’s Epilepsy Surgical Service (CESS)
Recommendation
OPEN UK regional epilepsy networks and CESS should:
•
coordinate clear, embedded referral criteria and shared care pathways from
secondary care and paediatric neurology to CESS,
•
ensure early identification of referral criteria and ensure referral to CESS
where appropriate.
Source
NICE CG 137: At the review, children, young people and adults should have ac­
cess to: written and visual information; counselling services; information about 
voluntary organisations; epilepsy specialist nurses; timely and appropriate 
investigations; referral to tertiary services, including surgery if appropriate. 
Epilepsy12 Key 
finding(s) and 
comparison to 
previous findings 
In Round 3, 8.0% (89/1112) of the children and young people diagnosed with 
epilepsy met one or more of the CESS referral criteria in England and Wales. 
30.3% (27/89) of the children and young people who met CESS referral criteria 
had CESS referral by one year.
Target 
audience(s)
OPEN UK regional epilepsy networks and CESS
Paediatric epilepsy clinicians

38
7. Comprehensive care plans
Recommendation
•
All Health Boards and Trusts should implement standardised approaches
to care planning content, or other robust mechanisms, to ensure that
essential elements of care are provided routinely to children with epilepsy
at diagnosis and reviewed on an ongoing basis.
•
Education and health providers at national, regional and local level should
agree procedures to facilitate appropriate, up-to-date health care planning
within education and two way information sharing.
Source
Children and young people with epilepsy should have an agreed and 
comprehensive clinical care plan (NICE QS4).
Epilepsy Support in Schools (Young Epilepsy, 2019), a survey of 356 children 
with epilepsy, reports that 37% did not have an Individual Healthcare Plan 
at school.
Epilepsy12 Key 
finding(s) and 
comparison to 
previous findings 
80.1% (109/136) of Trusts/Health Boards report ‘routinely undertaking 
comprehensive care plans for children with epilepsy’.
62.4% (694/1112) of children and young people with epilepsy had evidence 
after 12 months of an agreed comprehensive care plan. 
70.1% (779/1112) had documented evidence of appropriate core content. 
79.7% (886/1112) had evidence of discussion regarding water safety. 
79.7% (886/1112) had service contact details. 
88.5% (193/218) of children and young people diagnosed with epilepsy and on 
rescue medication had a parental prolonged seizure care plan. 
42.6% (474/1112) of children and young people diagnosed with epilepsy had 
evidence of information on SUDEP with noticeable regional variation. 
32.2% (231/717) of school-age children and young people with epilepsy had an 
IHP at school.
Target 
audience(s)
Health Boards and Trusts, with Education and health providers – 
OFSTED, school head teachers, school nurse, paediatric epilepsy service 
staff, patients and their families, youth workers, healthcare assistants, sports 
coaches or out of school organisations that provide activities 

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
39
8. Local and regional variation
Recommendation
•
Epilepsy12 should develop an ascertainment measure based on estimated
population sizes and estimates of epilepsy incidence according to Trust
and Health Boards. This would allow case ascertainment of the audit to be
compared with a measure of the expected epilepsy incidence and variation
in EEG rates.
•
All Trusts and Health Boards should ensure that epilepsy services have
sufficient clinician time job-planned to ensure capacity to submit accurate
audit data and implement quality improvement, in addition to clinical
activities
Source
This recommendation has been developed based on the Epilepsy12 
Methodology and Dataset Group’s on-going review of the audit methodology 
and of the results reported here.
Epilepsy12 Key 
finding(s) and 
comparison to 
previous findings 
127 out of 136 Health Boards and Trusts submitted and locked the data 
describing their organisation and services in November 2019. 
113 out of 149 Health Boards and Trusts submitted a record of the first year of 
care clinical data for one or more children and young people in cohort 1.
Target 
audience(s)
Epilepsy12 provider
Health Boards and Trusts - Trust medical director, lead for EEG, and 
paediatric epilepsy clinical lead

40
3. Organisation of Paediatric Epilepsy
Networks in the UK (OPEN UK)
The Organisation of Paediatric Epilepsy Networks in the UK (OPEN UK) began in late 2015, as a 
confederation of the sixteen individual regional clinical paediatric epilepsy networks, working closely 
with the British Paediatric Neurology Association (BPNA) and British Academy of Childhood Disability 
(BACD). The OPEN UK Working Group is hosted by the RCPCH, and connects local Health Board, 
Trust and regional leads to each other and to the Epilepsy12 national audit. OPEN UK also represents 
clinicians on the UK Paediatric Epilepsy Programme Board alongside the BPNA. 
The OPEN UK aims are to encourage the sharing of local, regional and national ideas, pilots and 
resources. This was well illustrated by the joint Epilepsy12/OPEN UK annual national conferences in
 2018 and 2019, at which many fabulous projects and ideas were shared from across the UK. We hope 
to return in 2020 with a programme planned to share quality improvements, technologies and 
innovations in paediatric epilepsy care. 
OPEN UK works to provide and strengthen the links between local, regional and national bodies. We 
are currently working with the RCPCH and NHS England to input into national strategy and shape 
ambitions for the future delivery and commissioning structures in paediatric epilepsy care. Examples 
of our success in this area include the recognition of the need for co-located mental health support 
within epilepsy teams, which was included in the April 2019 iteration of the NHS England Best 
Practice Tariff for Paediatric Epilepsy. A giant pillar of our agenda for the next few years is translating 
this into properly commissioned mental health screening and psychology support, across the UK. We 
are currently working with NHS England to ensure that the proposed rollout of ‘clinical networks’ in 
the Long Term Plan is translated into a high-functioning scaffolding for quality improvement at local, 
regional and national level.
To inform and guide future strategy, the regional network leads for OPEN UK shared information 
about their local activity to provide a better picture of how networks are operating across the UK. The 
networks shared how, with no or little dedicated time and resource, they have managed to meet up 
to eight times in the previous two years. This has brought together impressive multi-disciplinary 
epilepsy representatives including:
•
adult health professionals
•
commissioners
•
community nurses
•
analysts
•
education professionals
•
EEG services
•
epilepsy specialist nurses
•
epilepsy charities and third sector organisations
•
IT professionals
•
mental health professionals
•
paediatricians and epilepsy specialists
•
social care professionals.
Networks have been focusing on paediatric epilepsy care as well as more specific areas such as 

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
41
neurodisability, neurology, and neurosurgery for children with epilepsy. At network meetings, or through 
communication channels between meetings, the regular activities include case discussions, learning 
and development presentations, regional data and evidence about quality of care, Health Board and 
Trusts level data, young people’s participation, risk assessments, action and strategy planning. In the 
past two years networks have shaped and agreed new patient pathways and guidelines. 
OPEN UK regional network will continue to work in conjunction with the regional clinical leads and receive 
support from Epilepsy12. We will support each other to building on the results and recommendations 
made in this report, and bringing our teams together to continue to make positive improvements for 
all children and young people with seizures and epilepsies across the UK. 
Dr Richard Brown, Consultant Paediatrician, Cambridge University Hospitals NHS Foundation 
Trust & Chair of the OPEN UK Working Group
The 16 OPEN UK Regional Paediatric Epilepsy Networks are named in the following table.  The 
abbreviated regional network names appear in the regional network results of both the clinical and 
organisational audits in this report.
OPEN UK Regional 
Paediatric Epilepsy 
Network
Regional Network full name
BRPNF
Birmingham Regional Paediatric Neurology Forum
CEWT
Children's Epilepsy Workstream in Trent
EPEN
Eastern Paediatric Epilepsy Network
EPIC
Mersey and North Wales network 'Epilepsy in Childhood' interest group
NTPEN
North Thames Paediatric Epilepsy Network
NWEIG
North West Children and Young People's Epilepsy Interest Group
NI
Northern Ireland epilepsy services
ORENG
Oxford Region Epilepsy Interest Group
PENNEC
Paediatric Epilepsy Network for the North East and Cumbria
SETPEG
South East Thames Paediatric Epilepsy Group
SPEN
Scottish Paediatric Epilepsy Network
SWEP
South Wales Epilepsy Forum
SWIPE
South West Interest Group Paediatric Epilepsy
SWTPEG
South West Thames Paediatric Epilepsy Group
TEN
Trent Epilepsy Network
WPNN
Wessex Paediatric Neurosciences Network
YPEN
Yorkshire Paediatric Neurology Network

42
4.	 Epilepsy12 Youth Advocate Clinic Chat
Checklist: 2019-2020 progress report
“Helping patients and their families who need support 
with worries and anxieties linked to their epilepsy.” 
The Epilepsy12 Youth Advocates are a group of epilepsy experienced children, young people and families 
with two epilepsy specialist nurses from OPEN UK. We meet and work together as volunteers to look 
at projects which improve care for epilepsy patients and their families linked to the Epilepsy12 national 
audit programme.
Support with worries and anxieties
In 2018, we asked more than 130 children, young people 
and families what “creates the best epilepsy service”. 
They shared with us things that were working well and 
ideas for areas for improvement. You can read the report of 
what we found out at https://www.rcpch.ac.uk/resources/
epilepsy12-us-voices-rcpch-us-network 
From looking at all the information patients and their 
families said, we realised they wanted more support with 
worries and anxieties linked to epilepsy. This was chosen as 
our top priority to do something to help it to improve. 
Clinic Chat Checklist 
We wanted to find out what makes “gold standard services” and what is or could be offered 
to patients in relation to worries and anxieties. We didn’t want a long and boring process that 
people can ignore or leave the results on a shelf. We wanted to make something that is easy 
to do and that helps everyone – patients, families, doctors, nurses, the NHS – everyone.  It isn’t 
about finding out what people aren’t doing. It’s about helping everyone to know about the 
good practice that is already out there and sharing it for others to learn from.

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43
Creating the Clinic Chat Checklist 
We wanted to know, directly from clinics, about the care they already provide and what ideas they have 
for the future in relation to anxieties and worries.
We drafted questions and refined them before testing them out with two clinics. This really helped us 
to create the right set of questions and to check that they would be easily understood.
We also attended the Epilepsy12 & OPEN UK National Conference in 2019 to present our ideas about 
the checklist. We asked the 100+ epilepsy specialists present, what their wishes were for the Clinic 
Chat Checklist and how it might help them and their service, and for ideas on what would be the 
barriers to clinics taking part.
The clinic teams present told us that the Clinic Chat Checklist would improve care for patients by 
sharing ideas and resources, increasing joint working in the ‘team’, and would help to create 
child and young people friendly services. 
They also said the process needed to be straightforward and not take lots of time, that it shouldn’t 
identify individual patients and that the results should be shared with everyone.
This help was essential to supporting us to come up with our final set of questions. They included: 
•
What information and advice do you provide to Epilepsy patients to help them manage their
condition?
•
What support and information do you give to A&E staff to pass on to those who have had first-time
seizures?
•
How do you introduce patients and their families to their wider Epilepsy Care Team?
We felt it was important that the whole ‘team’, that help patients and their family, answered the 
questions, and really encouraged this as part of the process. 
Figure 2: Epilepsy12 & OPEN UK 2019 annual conference: Youth Advocates CYP session and Clinic 
Chat pledges

44
Our Clinic Chat Checklist Plan 
Our plan was simple:
•
work with 8 clinics spread geographically across England and Wales,
•
send them an email to explain who we are and why we wanted to do this along with helpful
information: https://youtu.be/3aw1aN4xSDA,
•
send them the “Clinic Chat Checklist” to complete and return to us,
•
look at all the responses and provide individualised feedback.
The clinics
During the Epilepsy12 & OPEN UK National 
Conference we asked for clinics to be part of 
the project. Lots of clinics contacted us on the 
day and others afterwards. 
We felt it was important that we had a large 
geographical spread of clinics and that at least 
two clinics should be in Wales. We also wanted 
some big clinics and some others small. We 
had clinics from the following regions:  
•
North East
•
North West
•
South East
•
South West
•
London
•
South Wales.
What we have found so far 
We were very impressed with how clinics 
involved many members of their team to 
complete the checklist and the ideas they have 
for change. There were lots of great examples 
of clinics doing a range of activities to support 
worries and anxieties with lots of resources. 
We were impressed with the hard work and 
dedication shown by each clinic.
We looked each Clinic Chat Checklist and 
discussed: 
•
things they were doing well,
•
ideas for change,
•
our top tips.
We provided individual clinics with feedback 
and ideas as well as top tips, links to resources 
and good ideas from others.
10 clinics registered interested
8 clinics completed their Clinic 
Chat Check List (2 Wales, 6
England)
100% completed by deadline
We asked all clinics what level of
award they would give to their
epilepsy service for “helping patients
and their families who need support
with worries and anxieties linked to
their epilepsy”.
•
3 clinics considered themselves
to be silver: “We are doing most
things really well.”
•
4 clinics considered themselves
to be bronze: “We are doing some
things really well.”
•
1 clinic didn’t grade themselves

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
45
Our top tips 
It was really clear that a lot of simple changes could make a huge difference to patients and 
their families. A lot of ideas were cheap, quick and easy however others required some further 
thought and planning. 
Cheap, quick and easy: 
•
A clear out of hours voice message for patients with advice and signposting where
appropriate.
•
Linking to local support for worries and anxieties e.g. Kooth (online service), MeeTwo (online
service) local counselling services, charities, school services, youth services etc.
•
Provide ‘protected time’ to discuss anxieties and worries with patients and families,
including where age appropriate the patient being offered to be seen alone.
•	
With more time and planning: 
•
Develop new patient packs which are age related – which includes signposting to local and
hospital services, national charities, helplines and includes specific information e.g. driving,
exams and travel.
•
Ensure good timely processes between A&E and being seen in clinic.
•
First aid training for patients and families.
•
The ability to offer school or home visits especially for newly diagnosed patients.
What next?
Part two of the plan will be to visit the clinics and talk about ideas and thoughts together 
and come up with a plan. Some things will cost nothing (we are very creative!), some of the 
ideas that clinics, patients and the E12 Youth Advocates might have will need some money. 
We even have ideas about where they can get it! 
We will be thinking about how to share the Clinic Chat Checklist process and learning with 
more clinics so that they can do it as a self-assessment. We are also keen that we are able 
to define what a ‘gold standard’ clinic looks like in relation to worries and anxieties. Keep 
checking the RCPCH &Us and Epilepsy12 webpages for more information over the coming 
year!
We want to thank all the clinics involved in the Clinic Chat Check list and are 
looking forward to working with more of you over the next year!

46
5. Epilepsy Quality Improvement
Programme (EQIP)
Background
Despite progress shown in the Epilepsy12 audit data, the provision and quality of specialist epilepsy care 
continues to vary between Health Boards or Trusts in England and Wales, particularly around adequate 
staffing and timely delivery of care processes. Given the complexity of the epilepsy spectrum of 
conditions, quality care requires holistic support, including mental health, educational and community 
awareness support. Consequently, improvement in care cannot be confined to just clinical processes, 
but also include other parts of the health service, schools, charity and community organisations. It 
requires a patient-centred approach, involving co-design and shared ownership of the care experience 
and outcome between service providers and patients and their families.
One of the activities of the audit was to set up a support system for QI activities to be undertaken by 
epilepsy services in the 16 regions of the Organisation of Paediatric Epilepsy Networks (OPEN UK). Given 
this aim, and in the wider context of the priorities set out in the NHS Long Term Plan, Epilepsy12 project 
and OPEN UK networks worked in collaboration to set up a Quality Improvement project supporting 
epilepsy services and utilising the epilepsy regional network structure.
The programme advisory group agreed on the following vision for the QI 
programme:
Epilepsy services are equitable and 
underpinned by the principles of 
continuous improvement for all 
children and young people regardless 
of background, material status and 
location. Epilepsy services are 
recognised as a high priority in public 
policy and the health service, at 
national and local levels. Child health 
practitioners, who specialise in epilepsy, 
are recognised, supported and 
empowered to work across geographic 
and service boundaries, including 
transition between paediatric and adult 
service provision. Children and young 
people with epilepsy enjoy clear access 
to the treatment they need and have a 
say in how it is designed and delivered.

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
47
Project scope
In September 2018, the Epilepsy12 project team, in collaboration with OPEN UK, recruited a 
group of specialist epilepsy nurses representing the OPEN UK regions, to act as advisors in the 
development of a QI project supporting the results of the Epilepsy12 audit. As a first step in the 
scoping phase, the group has informed the development of a survey to be conducted with epilepsy 
services, with a view to identifying high performing services and key processes involved in service 
delivery. The subsequent survey elicited 116 responses from 76 Health Boards and Trusts and its 
analysis produced a list of recommendations for a comprehensive care delivery including: 
 
 
 
 
 
 
 
  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Collecting regular 
feedback and 
reviewing after 
each clinic as a 
team. Involving 
children, young 
people and 
parents in service 
design and 
improvement. 
Meetings, 
reporting to 
hospital 
management 
and 
implementing 
measurable 
changes. 
Working closely 
with 
Commissioners 
on its BPC and 
ESN funding.
Having a 
coordinated team 
who meet 
regularly, develop 
objectives and 
agree actions 
together, check 
progress and 
evaluate.
Strong active 
links with 
local support
 groups, charities, 
schools.
Providing a point 
of contact for 
schools and 
patients all year 
and providing 
staff and peer 
training and 
materials for 
schools.
Figure 3: Example of comprehensive care delivery process map
Based on the results of the survey and further desktop research, the advisory group worked with the 
Epilepsy12 project team to establish the aims and vision for the programme. In order to achieve this 
vision the advisory group then worked with the team to establish the following aims of the programme:
•
support paediatric epilepsy services to identify and address gaps in care provision, including forging
or strengthening links with other parts of healthcare service, schools and support organisations,
•
enable information sharing and operational integration between services and across regional
networks.
In particular, the project objectives are to: 
•
assess the training and support needs of paediatric epilepsy services in order to optimise care,
•
provide needs-based training to epilepsy teams to equip them with skills and capabilities to improve 
care,
•
provide ongoing advice and support to teams implementing service improvements,
•
ensure collection of intervention measures to assess impact,
•
enable information and good practice sharing via the OPEN UK network,
•
evaluate the project as proof of concept and adapt for scale-up.

48
Project outcomes
 
  
 
 
 
 
 
 
  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
1
Teams have a clear sense 
of purpose, shared 
objectives and a plan for
 action with deﬁned roles
 and responsibilities
2
Teams have established ways 
of working including regular, 
structured teams meetings 
and communications on a 
daily basis
3
Participants have a good level 
of the knowledge and skills to 
identify priority areas to 
address, plan interventions,
engage stakeholders and 
measure success
Figure 4: EQIP project outcomes
Service outcomes
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Clinical audit
compliance
Regular patient 
engagement 
(feedback 
collection,
 analysis, reporting 
and action taking)
Improved links 
with schools, 
mental health 
and other 
support services, 
Commissioners
Networking and 
sharing ideas 
between 
participating units 
and with their 
regional networks
Figure 5: Service outcomes for EQIP teams
Project delivery
The RCPCH Epilepsy Quality Improvement Programme was developed in consultation with epilepsy 
practitioners, ensuring that it best suits their needs, while also borrowing from a similar model delivered 
with success in paediatric diabetes services in the UK. This model was originally started in Sweden, 
where it engaged with 85% of paediatric diabetes services over the period of 3 years and, in that time, it 
managed to significantly improve treatment outcomes and reduce variation between units.
The epilepsy QI collaborative programme pilot will be the ﬁrst of its kind 
to provide training with whole paediatric teams and equip them with the 
necessary tools to effect change within their local services.
Find out more about how to get involved with this amazing opportunity: 
email xxx@xxx.xx or visit www.rcpch.ac.uk/eqip
• Administrators
• Allied Health Professionals
• Clinical Audit staff
• Epilepsy Specialist Nurses
• Neurologists
• Neurophysiologists
• Paediatricians
• Psychologists
• Registrars
• Secretaries
• Transition Team
www.rcpch.ac.uk/eqip      xxx@xxx.xx
Launch date: Monday 17 June 2019
Who is a part of  your
 epilepsy team?
Royal College of
Paediatrics and Child Health
RCPCH
The Royal College of Paediatrics and Child Health (RCPCH) is a registered charity in England and Wales (1057744) and in Scotland (SC038299). ©RCPCH 2019
Epilepsy 
Specialist
Nurse
LEAD
Epilepsy12 quality improvement programme
Epilepsy12 quality improvement programme
Figure 6: RCPCH EQIP brand and promotional material 

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
49
How the programme works
RCPCH EQIP has been tailored to support paediatric epilepsy teams to work together to define 
their shared aims and develop practical interventions matching their capacity and resources. 
The six-month programme will require participating teams to come together for two bespoke 
training/sharing events, supporting them to: 
•
develop more cohesive teams with clearly defined roles and a shared sense of mission and
responsibility,
•
identify areas for improvement in care delivery,
•
design sustainable interventions to address these areas, that are manageable within their
existing set-up.
The training will be practical and hands-on, combining select quality improvement tools, high-
performing team development, patient and family engagement, leadership and influencing 
skills. We deliberately picked and chose elements of quality improvement methodology and 
combined it with other types of skills training, to provide a package which will correspond to the 
working reality of epilepsy teams – often struggling with people capacity, fragmented teamwork 
and limited resourcing. The project is designed to enable teams to learn and make action plans 
together in training. The teams will be given hands-on support during and between training 
sessions to design their interventions and will have the opportunity to learn from the experience 
of other participants as they go along.
Teams are invited to apply as a whole, via application with everyone attending together. Each 
team would nominate an EQIP Champion to galvanise and motivate the team in between 
learning sessions and report on progress to the trainers at the RCPCH. See our promotional 
video via the website www.rcpch.ac.uk/eqip. 
The learning events will be held in the Midlands, in a location with good transport links to ensure 
maximum possible convenience for services travelling in.
It is expected that, following the completion of the pilot, its evaluation will serve as a foundation 
for reflection and consolidation of learning with a view to adapt and scale-up the programme 
with more epilepsy services across the country. This further iteration of the collaborative will 
depend on the pilot’s success and ongoing funding via the Epilepsy12 clinical audit contract.

50
Residential weekend training 
Participant teams
The 12 participant teams that will 
become EQIP pioneers are as follows:
•
Aneurin Bevan University Health
Board
•
Chelsea and Westminster Hospital
NHS Foundation Trust
•
Doncaster and Bassetlaw Teaching
Hospitals NHS Foundation Trust
•
Guy's and St Thomas' NHS
Foundation Trust
•
Luton and Dunstable University
Hospital NHS Foundation Trust
•
Manchester University NHS
Foundation Trust
•
Nottingham University Hospitals
NHS Trust
•
Royal Berkshire NHS Foundation
Trust
•
Royal United Hospitals Bath NHS
Foundation Trust
•
South Tees Hospitals NHS
Foundation Trust
•
Southport and Ormskirk Hospital
NHS Trust
•
York Teaching Hospital NHS
Foundation Trust.
Our two-day residential weekend with the 12 teams 
participating in our pilot took place on 16 and 17 
November 2019. It kicked off with interactive QI 
training by expert QI trainer Dr Pat O’Connor - 
paediatric epilepsy NHS staff worked together to 
identify gaps and find sustainable improvements 
that would be tried and tested over the six-month 
programme.
The teams worked hard, learning and using many of 
the QI tools to help support them refine their local 
improvement projects. But the programme also 
included fun action learning sets and networking - 
breaking those silo barriers. By the end of the second 
day, each of the teams left the weekend energised 
and with a plan of action to move forward with their 
projects.
Further feedback from EQIP team members from 
the weekend include:
“Witnessing the motivation and commitment from 
everyone, and within the teams.”
“Interactive games/activities, e.g. skittles and pasta 
tasks, which highlighted QI in an abstract way.”
“All activities associated with practical application 
of QI models to our projects.”
“Having the opportunity for the team to write a 
plan and evaluate out aims, and how to change 
and improve.”
Acknowledgements
We would like to say a special thanks for their valuable input on the scope and delivery of this 
programme to the EQIP ESN advisors: Alison Mollett, Amanda Hirst, Carolyn McAskil, Christine Bennett, 
Debbie Dean, Emma Hassan, Jill Conium, Laura Neely, Rachel Wheway, QI Trainer: Dr Pat O’Connor, QI 
Discovery and the faculty team: Ms Angie Pullen, Dr Colin Dunkley, Mr Mirek  Skrypak, Ms Peri O’Connor, 
Dr Richard Brown 
Visit the RCPCH EQIP website or Twitter to access updates on the teams progress  as they 
continue through their journey on this programme. www.rcpch.ac.uk/eqip #RCPCHEQIP
The spring 2020 edition of Milestones, our member magazine has a piece from an EQIP 
Pioneer. Visit the milestone website for more updates on the EQIP.    

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
51

52
Useful resources
The Royal College of Paediatrics and Child Health
The Royal College of Paediatrics and Child Health (RCPCH) was founded in 1996. We play a major role 
in postgraduate medical education, professional standards, research and policy. The RCPCH has a 
number of useful resources, including:
•
British Paediatric Surveillance Unit www.rcpch.ac.uk/work-we-do/bpsu
The BPSU is a world leading centre for rare paediatric disease surveillance. It enables doctors and
researchers to investigate how many children in the UK and Republic of Ireland are affected by
particular rare diseases, conditions or treatments each year.
•
Courses and online learning www.rcpch.ac.uk/education/courses
•
Continuing professional development www.rcpch.ac.uk/education/continuing-professional-
development
•
Invited reviews www.rcpch.ac.uk/invitedreviews
We support healthcare organisations, commissioners and clinical teams to resolve concerns
about paediatric service provision, safety, training, compliance with standards, and proposals for
paediatric reconfiguration or service design. Our service is confidential, established and influential,
and tailored to each organisation’s needs.
•
Medicines for Children www.medicinesforchildren.org.uk
The Medicines for Children website provides parents and carers with information they can trust on
over 200 medicines commonly prescribed to children. It offers free access to patient information
leaflets and videos specifically developed to advice parents and carers how to give medicine to
their child.
•
MedsIQ www.qicentral.org.uk/meds-iq
Medication errors are a significant but preventable cause of harm to children and young people.
•
Research activities www.rcpch.ac.uk/work-we-do/research-activities
We aim to improve children’s health outcomes through supporting high quality and trusted
research. Let’s share our expertise, collaborate with others and promote the evidence to drive
forward improvements in child health.
•
RCPCH Child Protection portal https://childprotection.rcpch.ac.uk/
RCPCH Child Protection portal is an online resource to help inform clinical practice, child
protection procedures, and professional and expert opinion in the legal system.
•
RCPCH QI Central: www.qicentral.org.uk
QI Central is a free online resource open to all child health professionals to help embed QI projects
in clinical practice and continually improve services and outcomes for infants, children and young

Epilepsy12 2020 Combined organisational and clinical audits: Report for England and Wales, Round 3, Cohort 1 2018-19
53
people. As an online repository of peer-reviewed tools and projects, healthcare professionals are 
also able to submit their own projects and resources to share their experiences with others and 
propagate knowledge in quality improvement.
•
Workforce and service design www.rcpch.ac.uk/workforce
We play a key role in workforce planning to ensure there is an appropriately trained paediatric
medical workforce to deliver safe and sustainable services for children in the UK - in the present
and in the future.
Epilepsy12 Audit Key Stakeholder Organisations
•
British Paediatric Neurology Association bpna.org.uk
The British Paediatric Neurology Association is the professional organisation for doctors who
specialise in the care of children with neurological disorders.
•
Epilepsy Action www.epilepsy.org.uk
Epilepsy Action is a community of people committed to a better life for everyone affected by
epilepsy. We want high quality, accessible epilepsy healthcare services, so that people with
epilepsy have the support they need to manage their condition. We want wider awareness and
understanding of epilepsy, so that people living with the condition are treated with fairness and
respect.
•
Epilepsy Scotland www.epilepsyscotland.org.uk
In Scotland 54,000 people live with epilepsy. Children and older people are most at risk of
developing this common serious neurological condition but anyone can develop epilepsy at any
time, and 8 people a day in Scotland do. We want to make sure the needs of people with epilepsy
are met. This is why we campaign for improved healthcare, better information provision and an
end to stigma. In April 2008 Enlighten, Tackling Epilepsy merged with Epilepsy Scotland.
•
Royal College of Nursing www.rcn.org.uk
The RCN is a membership organisation of more than 435,000 registered nurses, midwives, health
care assistants and nursing students. We are both a professional body, carrying out work on
nursing standards, education and practice, and a trade union.
•
Epilepsy Specialist Nurses Association (ESNA) www.esna-online.org.uk
ESNA is a professional organisation whose membership consists of nurses and other health
professionals working to support people with epilepsy in the fields of adults, learning disabilities
and paediatrics. ESNA works with its membership to raise the profile of epilepsy and to encourage
a holistic and co-ordinated approach to care to enable our patients to reach the goal of self-
management.
•
Young Epilepsy www.youngepilepsy.org.uk
Young Epilepsy is the national charity supporting children and young people aged 25 and under
with epilepsy and associated conditions, as well as their families. With over 100 years expertise we
provide world class diagnosis, assessment and rehabilitation for children and young people with
epilepsy. We also undertake research into the condition and how it can be treated.

54
•
British Academy of Childhood Disability www.bacdis.org.uk
Membership is open to all professionals working in the field of childhood disability, including
paediatrics, psychiatry, specialist nursing, speech and language therapy, physiotherapy,
occupational therapy, psychology and education.
•
British Society for Clinical Neurophysiology www.bscn.org.uk
The BSCN is a medical charity whose aims, set out in our articles of association, are “to promote
and encourage for the public benefit the science and practice of clinical neurophysiology and
related sciences”.

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Glossary of terms and abbreviations
Absence seizure
A type of generalised seizure where the person briefly loses awareness 
and becomes blank or unresponsive. Absences often last a few seconds 
and the person is unconscious. If they are walking they might carry on 
walking.
Acute 
Inpatient review, or paediatric review in emergency department, or other 
clinical assessment in an acute paediatric setting 
Adherence 
When someone takes their medication as they have agreed with their 
doctor. This is a more modern term than ‘compliance’ (doing what your 
doctor tells you to), and implies that there has been some discussion 
between the individual and their doctor to agree upon a plan of 
treatment. Whether someone is adherent or not is a measure of how 
closely they adhere (or 'stick to') taking their medication or treatment as 
agreed.
Adverse events  
Another term for 'side effects'. These are effects of medication that 
happen alongside the effects you are expecting (the reason you are 
taking it). Side effects are usually, but not always, unwanted.
AED (Anti-epileptic 
drug) 
Anti-epileptic drugs (AEDs) are the main type of treatment for most 
people with epilepsy. AEDs are a type of medication that aims to stop 
seizures. There are many different AEDs and they work in different ways 
and stop different types of seizures. Up to 70% of people with epilepsy 
could have their seizures stopped with the right AEDs.
Atonic or atonic 
seizure
A type of generalised seizure where the person’s muscles suddenly lose 
tone, go floppy, and they fall down (usually forwards) if they are standing 
up. Although the seizures themselves don’t hurt, the person might hurt 
themselves, especially their head and face, when they fall. These seizures 
are usually very brief and the person becomes conscious again very 
quickly. This is sometimes called a ‘drop attack’.
BPT/BPC
Best Practice Tariff/Best Practice Criteria
Children’s Epilepsy 
Specialist Nurse 
A children’s nurse with a defined role and specific qualification and/or 
training in children’s epilepsies 
Childhood epilepsy 
syndrome 
A type of epilepsy that happens in children and young people, and 
follows a particular, typical pattern: the age that the seizures start, the 
type of seizures, the EEG recording and the progression or outcome. 
Some syndromes are benign and either go away or have little impact on 
the child. Others are severe and can affect the child’s behaviour, learning 
and life expectancy. This is sometimes just referred to as a ‘syndrome’.
Clonic seizures  
These are seizures where the person convulses (jerks or shakes). Unlike 
tonic clonic seizures, the person does not go stiff at the start of the 
seizure.
Clusters 
When a series or group of seizures happen close together in time, 
with gaps between each cluster. For example, in catamenial epilepsy, 
a woman might have a cluster of seizures around ovulation and no 
seizures at other times.

56
Complex focal seizures 
(CFS), Complex partial 
seizures (CPS)
Seizures that involve just part (not the whole) of the brain. These 
seizures used to be called 'complex partial seizures' or 'CPS'. The person 
will not be fully conscious and they are often very confused and may 
not remember what happens during the seizure. During CFS the 
person may behave strangely or make repetitive movements called 
automatisms. 
Consultant General 
Paediatrician 
A paediatric consultant (or associate specialist) with a role that includes 
seeing children or young people in a general outpatient or community 
clinic setting. They may or may not have other specialty or acute 
roles. They are likely to receive referrals directly from primary care. 
Neonatologists would not be included in this definition unless they also 
fulfil general paediatric roles. 
Convulsive seizure  
A seizure where the person’s body jerks or shakes. It is another name for 
tonic clonic or clonic seizures.
Diazepam  
A type of sedative medication that is given to someone in status 
epilepticus to stop the seizures. Diazepam is given rectally (up the 
bottom). This is sometimes referred to as a type of 'emergency 
medication'.
ECG 
An electrocardiogram (ECG) is a simple test that can be used to check 
your heart's rhythm and electrical activity. Sensors attached to the skin 
are used to detect the electrical signals produced by your heart each 
time it beats.
ED  
Emergency Department
Electroencephalogram 
(EEG) 
An electroencephalogram (EEG) is a recording of brain activity. During 
the test, small sensors are attached to the scalp to pick up the electrical 
signals produced when brain cells send messages to each other. These 
signals are recorded by a machine and are looked at by a doctor later to 
see if they're unusual.
Emergency 
medication  
Medication that is given to stop prolonged or repeated seizures (to stop 
status epilepticus from happening).
Epilepsy 
A chronic neurological condition characterised by two or more epileptic 
seizures (International League Against Epilepsy, ILAE). A pragmatic 
definition for epilepsy in this audit is 2 or more epileptic seizures more 
than 24 hours apart that are not acute symptomatic seizures or febrile 
seizures. 
Epilepsy surgery
Different types of surgery on the brain to try to reduce or stop seizures. 
Some people with epilepsy, whose seizures are not controlled or 
significantly reduced with medication, are able to have epilepsy surgery. 
Also called neurosurgery.
Epilepsy syndrome 
A complex of clinical features, signs and symptoms that together define 
a distinctive, recognizable clinical disorder (ILAE) 
‘Epilepsy syndrome 
category’ 
A group of epilepsies described using the terms idiopathic primary, 
symptomatic, probably symptomatic and cryptogenic and focal, partial, 
multifocal or generalized 
Epileptic seizure 
Seizures that start due to interrupted electrical activity in the brain but 
can affect the body in many different ways. Clinical manifestation(s) 
of epileptic (excessive and/or hypersynchronous), usually self-limited 
activity of neurons in the brain. (ILAE) 

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Febrile convulsions 
Convulsive seizures that can happen in young children (from about 
six months to six years of age) when they have a high temperature or 
fever. Febrile convulsions happen because very young children cannot 
control their body temperature very well. Although they can look like 
epileptic seizures they are not: they are caused by high temperatures not 
interrupted brain activity.
First paediatric 
assessment 
A 'face to face’ assessment by a secondary level/tier doctor in a paediatric 
service occurring in any non-acute or acute setting. Assessment within 
emergency department counts if performed by paediatric team rather 
than an emergency department team. Some paediatric neurologists 
see referrals direct from GP or ED and these would count as both a first 
paediatric assessment and tertiary input
Focal seizures 
These are seizures that happen in, and affect, only part or one side of 
the brain (not both sides of the brain) and start from a 'focal point' in the 
brain. What happens in focal seizures varies depending on which part of 
the brain is affected and what that part of the brain normally does. Also 
known as 'partial seizures'.
Frontal lobe seizures
Focal seizures that start in the frontal lobe. Simple focal seizures from 
the frontal lobe include making strange movements or stiffness or 
jerking in part of the body such as the arm. Complex focal seizures from 
this area include making strange postures with the arms or legs or 
making juddering movements.
General examination
Any evidence of a multisystem examination of the child other than 
neurological examination
General practitioners 
(GP)
A doctor based in the community who treats patients with all common 
medical conditions with minor or chronic illnesses and refers those with 
serious conditions to a hospital. for urgent and specialist treatment. 
They focus on the health of the whole person combining physical, 
psychological and social aspects of care.
Generalised seizures 
Seizures that happen in, and affect, the both sides of the brain from the 
start. There are many different types of generalised seizures, but they all 
involve the person becoming unconscious, even just for a few seconds, 
and they won't remember the seizure itself. The most well-known 
generalised seizure is the tonic clonic (convulsive) seizure.
Genetic
The information in the DNA in our cells that controls our characteristics, 
for example hair colour, sex and height.
Handover clinic
A clinic where a young people 'leaves the paediatric service and joins 
an adult service' and comprises both adult and paediatric health 
professionals
Infantile spasms (also 
called West Syndrome)
A rare childhood epilepsy syndrome that starts in the first year of life. The 
child has brief jerks or spasms of the arms, legs or whole body, often in 
clusters. Some children have problems with learning or behaviour.
Input
Any  form of documented clinical contact including face  to face  clinical, 
written, electronic or telephone contact
Juvenile myoclonic 
epilepsy (JME)
A type of childhood epilepsy syndrome that starts between the ages of 
11 and 18 years. The person usually has myoclonic seizures when they are 
waking up and might also have absences and tonic clonic seizures. This 
syndrome usually responds well to medication.

58
Ketogenic diet
A high fat, controlled protein, low carbohydrate diet that helps control 
seizures in some children with epilepsy. The diet works by encouraging 
the body to get energy from fat (rather than from carbohydrates). When 
this happens, the body produces chemicals called ketones which, for 
some children, help prevent seizures from happening.
Ketones 
Chemicals produced in the body when the body uses fat for energy. This 
happens in high-fat diets such as the ketogenic diet. Ketones can help 
prevent seizures from happening for some people.
Ketosis 
The process of producing ketones in the body, when the body uses fat 
for energy.
Magnetic resonance 
imaging (MRI)
A type of scan that uses strong magnetic fields and radio waves to 
produce detailed images of the inside of the body. An MRI scanner is a 
large tube that contains powerful magnets
Midazolam 
A type of medication that is given to someone who is having prolonged 
or repeated seizures, to stop status epilepticus from happening. Buccal 
means it is given into the mouth between the teeth and the cheek. 
Midazolam is a type of emergency medication.
Myoclonic seizure 
A type of generalised seizure where just part of the body (for example, 
a leg or arm) suddenly jerks. Myoclonic jerks often happen in clusters 
(several happening in a row) and often early in the morning.
Neurodisability
Documented diagnosis including any of the following phrases indicating 
the diagnosis made by the assessing team:
•
Autistic spectrum disorder
•
Moderate, severe (or profound) learning difficulty or global
development delay
•
Cerebral palsy
•
Neurodegenerative disease or condition
•
An identified chromosomal disorder with a neurological or
developmental component
•
Attention deficit hyperactivity disorder (ADHD)
•
Exclusions e.g. hypermobility, dyspraxia, specific learning difficulties
e.g. (dyslexia, dyscalculia)
Neurological 
examination
Any evidence of a neurological examination of the child
Paediatrician with 
expertise
A paediatric consultant (or associate specialist) defined by themselves, 
their employer and tertiary service/network as having:
•
training and continuing education in epilepsies
•
AND peer review of practice
•
AND regular audit of diagnosis (e.g. participation in Epilepsy12)
(Consensus Conference on Better care for children and adults with 
epilepsy- Final Statement, Royal College of Physicians of Edinburgh, 
2002). A paediatric neurologist is also defined as a ‘paediatrician with 
expertise’.
Parietal lobe seizures 
Focal seizures that start in the parietal lobe. Simple focal seizures from 
the parietal lobe include feeling numb or tingling in part of the body, a 
burning sensation or feeling of heat, or feeling that parts of the body are 
bigger or smaller than they really are. Complex focal seizures from this 
area are rare.

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Partial seizures 
Another name for 'focal seizures'. There are seizures that happen in, 
and affect, only part of the brain (not both sides of the brain) and start 
from a 'focal point' in the brain. What happens in these seizures varies 
depending on which part of the brain is affected and what that part of 
the brain normally does.
Paroxysmal episodes 
This is the term chosen in this audit to represent the events causing 
concern. It includes all epileptic and non-epileptic seizures and also 
seizures of uncertain in origin.
Psychiatrist
A medically trained doctor who specialises in mental health problems. 
Psychiatrists are medically qualified and can prescribe medications.
Psychologist 
Someone who studies the way the mind works and how people behave. 
Clinical psychologists are trained to help people manage mental health 
and social problems and they cannot prescribe medications.
Refractory epilepsy
Epilepsy that does not respond to AEDs (AEDs do not stop the seizures). 
This is also called intractable, drug-resistant or difficult to control 
epilepsy.
Rescue medication 
Medication that is given to a person when they are having prolonged or 
repeated seizures to stop status epilepticus from happening. It is usually 
either rectal diazepam or buccal midazolam. These are only given in an 
emergency: they are not the same as AEDs, which are taken every day to 
prevent seizures. 
Risk assessment 
An assessment of someone's safety and possible risks. This might be 
at work, at home or any other area. Assessments look at risks to health 
and safety as well as ways to reduce risk, such as making reasonable 
adjustments or taking safety measures.
Secondarily 
generalised seizures
Seizures that start as a focal seizure (in part of the brain) but the seizure 
activity spreads and affects the whole of the brain. In simple terms these 
are ‘small seizures’ that become ‘big seizures’. The focal seizure start is 
sometimes called an ‘aura’ or ‘seizure warning’, and the seizure usually 
spreads to become a tonic clonic seizure.
Seizure
A sudden, short-lived event that causes a change in the person’s 
behaviour, awareness or consciousness. There are lots of different 
causes and types of seizures including epileptic seizures, hypoglycaemic 
(diabetic) seizures, non-epileptic seizures, syncope (fainting), and 
seizures caused by a heart problem. 
Seizure control
When seizures are completely stopped, and the person experiences no 
seizures anymore. This is usually achieved by taking AEDs.
Seizure-free
When a person’s seizures are fully controlled and stop happening (they 
don't have seizures anymore). 
Severe Myoclonic 
Epilepsy in Infancy 
(SMEI) (also called 
Dravet Syndrome)
 A rare childhood epilepsy syndrome that starts in a child’s first few 
years of life. The child has jerking seizures, usually on one side of the 
body. They may also be photosensitive. Learning, speech and general 
development may be affected.
SUDEP (Sudden 
Unexpected Death in 
Epilepsy)
When a person with epilepsy suddenly dies and no reason for their 
death can be seen. 
Symptomatic epilepsy  
Epilepsy where there is a known physical cause of the person’s seizures. 
This could be due to a scar on the brain, an accident or head injury, or a 
stroke or brain tumour. Structural causes can often be seen on an MRI.

60
Syncope 
When someone loses consciousness and collapses because the oxygen 
getting to their brain temporarily stops. This can be because of a drop-
in blood pressure, a change in the heartbeat (and not enough blood is 
pumped through the heart), or because of a reduced amount of oxygen 
in the blood. Syncope is also another word for ‘faint’.
'School age'
Child 5 years and older (past their 5th birthday)
Temporal lobe seizures 
Focal seizures that start in the temporal lobe. Simple focal seizures 
from the temporal lobe include an epigastric rising sensation, a sudden 
feeling of fear or joy or a funny taste or smell. 
Tonic clonic seizure 
A type of generalised seizure where the person stiffens (the ‘tonic’ part), 
falls down if they are standing, and then shakes, jerks or convulses (the 
‘clonic’ part). 
Transition
When the management of someone's epilepsy moves ('transfers') from 
a paediatrician to an adult neurologist. Transition usually happens at 
around 16 - 18 years of age.
Treatment plan
A record of the number and types of AED taken, when to take them and 
what to do if they do not work or need adjusting or changing. This is also 
called a drug plan.
Vagus nerve
The Vagus nerves connect to many different parts of the body and 
passes messages between the brain and various organs, including the 
throat, the heart, organs in the chest and abdomen.
Vagus Nerve 
Stimulation (VNS) 
A type of treatment for epilepsy. It involves having a generator implanted 
in the chest wall attached to electrical wires around the Vagus nerve 
in the neck. The generator sends regular electrical signals through the 
Vagus nerve into the brain. For some people, this prevents or reduces the 
brain activity that causes seizures, and can reduce the number, length or 
severity of seizures they have.
Video telemetry
A test which involves having an EEG and being videotaped at the same 
time. This means that the EEG recording of a seizure can be compared 
to what is seen happening to the person. This can help to diagnose 
epilepsy and non-epileptic seizures.


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 September 2020
Epilepsy12 
Combined organisational and clinical audits: 
Report for England and Wales Round 3 Cohort 1 (2018-19)