Epilepsy12 National report 2021 on 2019-20 data
Source: data.gov.uk (2023-03-28)

Epilepsy12 2021 National organisational and clinical audits - combined report on 2020 data. This is a combined report of the organisational and clinical audits for Round 3 Cohort 2, published in 2021. 

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 2020, and the standard of clinical care provided by services that focuses on patients in ‘cohort 2’. This is children and young people who had a first paediatric assessment for a ‘paroxysmal episode’ (or episodes) between 1 December 2018 and 30 November 2019. 

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-2021

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 2 (2019-20)
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 2 (2019-20). 
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
© 2021 Healthcare Quality Improvement Partnership (HQIP)
Published by RCPCH 2021. 
The Royal College of Paediatrics and Child Health is a registered charity in England and Wales (1057744) and in Scotland (SCO38299).

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
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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. These 
teams have put time and effort into collecting information for the audit and working to improve 
paediatric epilepsy services in what have been incredibly challenging circumstances. We would like to 
give additional thanks to the Epilepsy12 designated clinical leads and EEG service leads in each Health 
Board or Trust, and the Organisation of Paediatric Epilepsy Networks in the UK (OPEN UK) networks 
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-)
Prof Nicholas Bishop, Vice President for Science & Research, Royal College of Paediatrics and Child Health 
and Chair of the Epilepsy12 Project Board 
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 OPEN UK Working Group
Ms Vivien Dunne (née Seagrove), Project Manager, Healthcare Quality Improvement Partnership (HQIP)
Dr Katherine Martin, Consultant Paediatrician, British Academy of Childhood Disability
Dr Nandini Mullatti, Consultant Clinical Neurophysiologist, British Society for Clinical Neurophysiology
Ms Rosemarie Pardington, Director of Integrated Care, Young Epilepsy 
Ms Angie Pullen, Epilepsy Services Manager, Epilepsy Action
Mr Mirek Skrypak, Associate Director for Quality and Development, Healthcare Quality Improvement 
Partnership (HQIP)
Professor Martin Kirkpatrick, Consultant Paediatric Neurologist, Scottish Paediatric Epilepsy Network 
(2017 – 2020)
Ms Sharon Brown, Clinical Nurse Specialist Paediatric Epilepsies, Royal College of Nursing (2017 – 2019)
Dr Ailsa McLellan, Consultant Paediatric Neurologist, Chair of British Paediatric Epilepsy Group, British 
Paediatric Neurology Association (2017 – 2019)
Dr Marcia Philbin, Assistant Director, Research & Policy Division, Royal College of Paediatrics and Child 
Health (2017 – 2019) 

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
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Epilepsy12 Methodology and Dataset Group members
Dr Sophie Bennett, Clinical Psychologist, Great Ormond Street Hospital, GOSH
Dr Richard Brown, Consultant Paediatrician, Cambridge University Hospitals NHS Foundation Trust & Chair 
of the OPEN UK Working Group
Ms Jill Conium, Children’s Epilepsy Specialist Nurse, East and North Hertfordshire NHS Trust 
Dr Trupti Dhorajiwala, Consultant Paediatrician, Tameside and Glossop Integrated Care NHS Foundation 
Trust 
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 Morgannwg University Health Board 
Ms Millie Power, Patient & Nurse representative

Dr Colin Reilly, Young Epilepsy Representative
 
Dr Robert Robinson, Consultant Paediatric Neurologist, GOSH 
Ms Lisa Thurston, Parent and Young Epilepsy Representative
Dr Sara L. Shavel-Jessop, Clinical Paediatric Neuropsychologist, GOSH
Mr Robert Grant, Chartered Statistician at BayesCamp & statistical advisor to Epilepsy12 
Ms Peri O’Connor, Healthcare Projects Coordinator, Epilepsy Action (2017 - 2020)
Mr Malcolm Roxburgh, Epilepsy12 Statistician, Royal College of Paediatrics and Child Health (2018 – 2020)
Mr Neil Williamson, Epilepsy Nurse Specialist (Children), Lewisham and Greenwich NHS Trust (2017 – 2019)
Dr Anissa Tonberg, Policy Officer, Epilepsy Scotland (2017 – 2019)
Dr Kelly St Pier, Neurophysiology Professional Service Manager (Video-telemetry), GOSH and Past Chair of 
the Association of Neurophysiological Scientists (2017 – 2019)

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
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Epilepsy12 audit project team
Mr Calvin Down, Clinical Standards and Audit Manager, Royal College of Paediatrics and Child Health 
Mrs Fridah Calvin-Mwingirwa, Epilepsy12 Data Analyst, Royal College of Paediatrics and Child Health 
Ms Melanie David-Feveck, Project Coordinator, Royal College of Paediatrics and Child Health 
Mr Calvin Down, Clinical Standards and Audit Manager, Royal College of Paediatrics and Child Health 
Mr Simon Duncan, Project Administrator, Royal College of Paediatrics and Child Health 
Mr Tom Keiller, Project Administrator, Royal College of Paediatrics and Child Health 
Ms Helen Stacey, Project Manager, Royal College of Paediatrics and Child Health 
Mr Mark Hannigan, Clinical standards and QI manager, Royal College of Paediatrics and Child Health (2017 
–2019)

Ms Lisa Cummins, Epilepsy12 Data Analyst, Royal College of Paediatrics and Child Health (2017 – 2019)
Special thanks
Ms Emma Hosking, Engagement & Participation Youth Worker, Royal College of Paediatrics and Child 
Health

Ms Emma Sparrow, Children and Young People’s Engagement Manager, Royal College of Paediatrics and 
Child Health
Epilepsy12 Youth Advocates
EQIP Faculty & Advisory groups
OPEN UK Network Leads Working Group
 

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
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Contents
Foreword..........................................................................................................................................................	8
Executive summary.........................................................................................................................................	9
1.Introduction ..................................................................................................................................................	13
	
Quality improvement ...............................................................................................................................	13
2.Clinical and organisational audits .............................................................................................................	15
	
Clinical audit of ‘cohort 2’ ........................................................................................................................	15	
	
Organisational audit of November 2020  .............................................................................................	16	
3.Key findings and  recommendations ........................................................................................................	17
	
Mental health support  ............................................................................................................................	19
	
Care planning ............................................................................................................................................	21	
	
Sustainable paediatric epilepsy care.....................................................................................................	23
	
Specialist input into care  ........................................................................................................................	25
	
Neurology services and epilepsy surgery..............................................................................................	27	
	
Diagnoses and use of medications.........................................................................................................	28
4.Organisation of Paediatric Epilepsy Networks in the UK (OPEN UK)....................................................	29
5.Epilepsy12 Youth Advocate Clinic Chat Checklist....................................................................................	32
6.Epilepsy Quality Improvement Programme (EQIP).................................................................................	39
7.Worcester Acute Hospitals Trust: using Epilepsy12 to drive service improvements .........................	43
8.Summary of recommendations..................................................................................................................	48
Useful resources..............................................................................................................................................	53
Glossary of terms and abbreviations............................................................................................................	55

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
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The full audit results and additional information are listed below. These are available to download 
from Epilepsy12.
Appendix A: Epilepsy12 Round 3, 2020 Organisational audit   
Full results:
	
Participation 	
	
Workforce 
	
Clinic configuration 
	
Tertiary provision 
	
Investigations 
	
Service contact  
	
Transition 
	
Mental health
	
Neurodevelopmental support 
	
Care planning 
	
Patient database or registry
	
Findings by OPEN UK regional networks
List of organisational data figures & tables
Data completeness
Appendix B: Epilepsy12 Round 3, Cohort 2 Clinical audit
Full results:
	
Participation and case ascertainment 
	
Description of cohort
	
Diagnostic status
	
Initial referral and examination 
	
Description of episodes 
	
Convulsive seizures
	
Neurodisability or neurodevelopmental problems 
	
Mental health conditions
	
Investigations 
	
Treatment 
	
Overview of performance indicators
	
Care planning
	
Professionals and services involved in care 
List of clinical data figures & tables
Data completeness

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
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Foreword
Epilepsy can start at any age and there are many different types. Epilepsy changes through your life, 
sometimes with more seizures, sometimes with different seizures, or it is stable and in the background. 
It can affect anyone, at any age, from any walk of life. 
Supporting children and young people during this journey and providing good quality care is essential. 
We have been talking about all the different elements that make up good care. It isn’t one person or 
one action that supports children, young people and their families but lots of people and actions that 
made the difference. 
Good transitions, mental health support and accessible information need to be part of standard care. 
Having access to an epilepsy specialist nurse (ESN), consultant paediatrician with epilepsy specialist 
knowledge and the ability to contact your epilepsy service when you need support, help or guidance 
is really important as well. 
Looking at the Epilepsy12 National Organisational and Clinical Audits it is exciting to see improvements 
that have been made in care, but we need to keep this going. We want people to recognise that having 
a full picture of care for children and young people with epilepsy is important. So, continuing to ask 
what children, young people and families think, what they want and involving them is really important. 
We want to make sure that the needs of children and young people with long term conditions, including 
epilepsy, are recognised. We want everyone to continue to raise awareness of epilepsy to other health 
staff, in education and the wider community.
RCPCH &Us Epilepsy12 Youth Advocates
The voice of children, 
young people and families
&Us
RCPCH

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
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Executive summary
This report presents data and evidence from the three main domains of Epilepsy12: a clinical audit 
describing patient care, an organisational audit describing service structures, and related quality 
improvement activities. 
The clinical audit data describes patient care of ‘cohort 2’. This is children and young people who had a 
first paediatric assessment for a ‘paroxysmal episode’ (or episodes) between 1 December 2018 and 30 
November 2019. Paroxysmal episodes are any epileptic seizures, non-epileptic seizures, or seizures of 
uncertain origin. Epilepsy12 follows patients for twelve months of care following their first assessment. 
For many children and young people in cohort 2, this includes care provided during the COVID-19 
pandemic in 2020.  
The organisational audit data describes the services and workforces of paediatric services, at Trust 
and Health Board level, in England and Wales as they were in November 2020. At this time the NHS 
was dealing with a significant surge in COVID-19 cases and hospitalisations in both England and Wales. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
  
 
 
 
 
 
 
 
 
 
 
 
 
Care provided to 6177 children and
young people; 34% (2106) were 
diagnosed with epilepsy.
Children and young people were
referred in 2018/19 with 12 months
of subsequent care, some during the 
COVID-19 pandemic.
The patient care described is from
103 (of 145) English NHS Trusts and
Welsh NHS Health Boards.
Organisational structure data is from
119 (of 145) English NHS Trusts and
Welsh NHS Health Boards.
In previous stages of Epilepsy12, there has been considerable variation in the ability of different Health 
Boards and Trusts in England and Wales to provide adequate workforce time and resources to participate 
in the national audit. In 2020 this has been more challenging than ever. We want to recognise the 
sheer dedication to children and young people with epilepsy that has driven participation in the audit 
and quality improvement activities this past year. However, gaps in both clinical and organisational 
audit data indicate that some services had to suspend their activities to focus on maintaining core 
clinical duties.

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
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32%
70%
65%
48%
71%
98%
71%
65%
91%
61%
23%
52%
73%
87%
32%
70%
62%
40%
100%
97%
69%
68%
88%
62%
30%
59%
69%
88%
0%
20%
40%
60%
80%
100%
12. School Individual Healthcare Plan:
11. Comprehensive Care Planning
content:
10. Comprehensive Care Planning
agreement:
9b. Sodium Valproate all females:
9a. Sodium Valproate females
           9 years old and greater:
8. Accuracy of diagnosis:
7. MRI:
6. ECG:
5. Seizure Formulation:
4. Appropriate first paediatric
assessment:
3b. Epilepsy Surgery referral:
3. Tertiary involvement:
2. Epilepsy nurse specialist:
1. Paediatrician with expertise:
E12 performance indicators by Cohort
Round 3 Cohort 1
Round 3 Cohort 2
There are 12 ‘Performance Indicator’ measures which were derived from national guidelines and 
recommendations. The summary chart above shows the proportion of care which met the criteria 
of each indicator, for children and young people with epilepsy in cohorts 1 and 2. Patients in cohort 2 
completed their first year of care between 1 December 2019 to 30 November 2020. Patients in cohort 
1 did so a year earlier, between 1 December 2018 to 30 November 2019.
Overall the results for the two cohorts are similar, which highlights both consistent areas of strength 
as well as continued scope for improvement in aspects such as input from ESNs, comprehensive care 
planning, access to epilepsy surgery services, and links to school epilepsy care plans. 
Key themes and recommendations for improvement
There were very few children and young people with an identified mental health condition in cohort 
2. Without wide-spread use of screening, opportunities for referral into the appropriate pathway for 
assessment could be missed. 
1. All Health Boards and Trusts should ensure that: 
•	
All children and young people with epilepsy are provided with psychosocial support and 
signposting to help them manage their condition and their related worries or anxieties,
•	
All children and young people with epilepsy have ongoing screening for mental health problems 
using a validated tool as part of their routine epilepsy care. Where there are concerns about 
mental health, children and young people are referred to an appropriate mental health service 
via an agreed pathway. There should be timely access to diagnosis and treatment.
2. Hospital and community commissioners should commission increased integrated psychosocial 
and mental health support for children and young people receiving care for long-term conditions. 
This should be co-located within the epilepsy clinic, and inclusive of co-morbidities.
 

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
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There was also evidence of wide-spread care planning for children with epilepsy. However, at patient-
level there was inconsistency in the care plans achieving all the core elements. 
3. All Health Board and Trust managers and epilepsy clinical teams should implement standardised 
approaches to epilepsy care planning content provision to ensure that essential elements of care 
are always provided for all children and young people with epilepsy and these are reviewed on an 
ongoing basis. 
4. Health Board and Trust managers, epilepsy clinical teams, school head teachers, and school 
nurses should agree processes to facilitate appropriate, up-to-date health care planning within 
education and two-way information sharing. 
Epilepsy12 is developing a new tool for 2021 to help teams evidence in real-time the core elements 
of care planning for the children and young people with epilepsy in their care.
The data submitted to Epilepsy12 shows that during the COVID-19 pandemic, services have done very 
well to maintain care for children and young people with epilepsy. However, there were also services 
and aspects of ‘timeliness’ that indicate some of the risks and pressures in the system.
5. Epilepsy services should be supported by their Trust or Health Board’s management and the 
commissioning organisations to:
•	
Develop a defined epilepsy team approach to service provision and service improvement,
•	
Allocate time within job plans to support team functions including dedicated time for audit 
participation and related quality improvement actions. 
6. Hospital commissioners, NHS Regional Offices, Regional Partnership Boards, NHS England and 
NHS Wales should ensure that there is capacity to provide timely access to necessary epilepsy 
investigations (such as EEG, ECG, MRI and CT), so that children and young people are not disadvantaged 
by the variation in availability of diagnostic services between Health Boards and Trusts.
Epilepsy Specialist Nurses (ESNs) and Paediatric Consultants with expertise in epilepsies play crucial 
roles in epilepsy diagnosis and ongoing care. Most children and young people received specialist input 
during their first year of care, but this was not available in every Trust and Health Board.
7. All Health Board and Trust managers should employ sufficient Epilepsy Specialist Nurses and 
consultant paediatricians “with expertise” in epilepsy to ensure all children and young people with 
epilepsy can reliably receive responsive, individualised, specialist input into their care for epilepsy 
and related concerns, for example, psychological and developmental issues.
8. All Health Board and Trust managers and hospital and community commissioners should ensure 
that adult and paediatric epilepsy teams are resourced to allow, and have time allocated in job 
plans, for joint transition-related clinical appointments and quality improvement work.
A smaller proportion of children and young people who met surgical referral criteria had been referred 
to neurology or the Children’s Epilepsy Surgery Service (CESS). Children and young people may be 
missing out on, or having delayed access to, epilepsy surgeries and specialist neurological care.

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9. OPEN UK regional networks, NHS England, NHS Wales, BPNA, RCPCH, Health Education England 
and Health Education and Improvement Wales should work together to review the Epilepsy12 
findings in their area and ensure there are:
•	
Sufficient paediatric neurologists to provide timely assessment and ongoing management,
•	
Robust referral pathways to paediatric neurology such that children and young people are not 
disadvantaged by the variation in access to specialists between Health Boards and Trusts.
10. The specialist CESS centres should collectively:
•	
Review the referral criteria to ensure these are clear, consistent, and embedded in shared care 
pathways from secondary care and paediatric neurology, and
•	
Agree a communications strategy to raise awareness of referral criteria and encourage early 
referral of appropriate children and young people.

Quality Improvement
The third domain of Epilepsy12 is our quality improvement activities, including our work with the 
regional epilepsy networks and annual stakeholder conference. There were two Epilepsy12 quality 
improvement pilots taking place in 2019/20. 
The RCPCH Epilepsy Quality Improvement Programme (EQIP) was piloted in 2019/20. EQIP formed 
a collaborative with 12 epilepsy teams, each receiving training and support to implement a range of 
quality improvement projects in their services. 
A group of epilepsy-experienced young people, the ‘Epilepsy12 Youth Advocates’ have been working 
with services to improve support for children and young people with epilepsy. Their impact on quality 
improvement was nationally recognised, as they were awarded joint ‘National Volunteers of the Year’ 
in the HQIP Audit Heroes 2020. 
Based on this work, the Epilepsy12 Youth Advocates chose four top things which make a ‘gold standard’ 
approach to supporting patient’s anxieties and worries with their epilepsy:
1.	
access to information at the right time,
2.	 having an Epilepsy Specialist Nurse who is easy to contact,
3.	 having a calm, kind and understanding team,
4.	 access to mental health services.

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
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1. Introduction
Epilepsy12 was established in 2009 and has the continued aim of helping epilepsy services, and those 
who commission health services, to measure and improve the quality of care for children and young 
people with seizures and epilepsies. The audit is commissioned by the Healthcare Quality Improvement 
Partnership (HQIP) as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP) 
and is delivered by the Royal College of Paediatrics and Child Health (RCPCH).
Epilepsy is the most common significant long-term neurological condition of childhood and affects an 
estimated 112,000 children and young people in the UK. Epilepsy12 seeks to help improve the standard 
of care for children and young people with epilepsies. To do this, the audit collects and processes 
patient data. This information is used by the audit to highlight areas where services are doing well, and 
also identify areas in which they need to improve.
The RCPCH delivered Rounds 1 and 2 of Epilepsy12 between 2009 and 2014, 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. In 2020 the contract with RCPCH to deliver the audit was extended 
up to 31 March 2022.
Rounds 1 and 2 of the audit included Health Boards and Trusts across England, Northern Ireland, 
Scotland and Wales. Round 3 has included Health Boards and Trusts in England and Wales. It is 
comprised of three main audit domains: the organisational audit (service descriptor), the clinical audit 
(clinical care domain) and associated quality improvement activities. 
In Round 3, Epilepsy12’s aims are to:
•	
Continue to measure and improve care and outcomes for 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 alongside metrics about mental health, education and 
transition to adult services,
•	
Provide services with local real-time patient- and service-level reporting.
All current and previous publications from Epilepsy12 are available at www.rcpch.ac.uk/epilepsy12. 
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 in the UK (OPEN 
UK), hosting quarterly national meetings to help regional leads share learning and co-ordinate strategy. 
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 

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
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across the whole OPEN UK network.
The third Epilepsy12 & OPEN UK National Conference was hosted online on 10 September 2020. 
More than 170 health professionals, working in support of paediatric epilepsy services and patient 
organisations, came together with the aim of learning from each other and improving care for children 
and young people with epilepsies. The conference was chaired by Professor Finbar O’Callaghan, 
Professor of Paediatric Neuroscience at UCL, (Hon) Consultant Paediatric Neurologist, and President 
of the British Paediatric Neurology Association (BPNA). The event included a young people-led 
symposium, discussion of the Epilepsy12 2020 national report which was published on the day, and 
an Epilepsy Quality Improvement Programme showcase. Presentations delivered on the day can be 
viewed via the project website: www.rcpch.ac.uk/epilepsy12.
Epilepsy Quality Improvement Programme (EQIP)
The RCPCH Epilepsy Quality Improvement Programme (EQIP) is a model for a comprehensive Quality 
Improvement (QI) programme, tailored to support paediatric epilepsy teams to work together to 
define their shared aims and identify current gaps in service provision. This pilot took place from June 
2019 until July 2020. A supplement detailing the pilot aims, activities and outcomes is planned for later 
in 2021. Further information can be found online at www.rcpch.ac.uk/eqip. 
Involving children and young people
The Epilepsy12 Youth Advocates have been working with services to improve support for worries and 
anxieties of children and young people with epilepsy. Based on their earlier research with children 
and young people, the Youth Advocates designed a self-assessment process for paediatric epilepsy 
services, the ‘Clinic Chat Check List’. Their work piloting this with eight services was recognised through 
being named joint winners of the ‘National Volunteer of the Year’ in the HQIP Audit Heroes 2020 Awards 
which highlight work taking place all over the country to improve health care for patients. See chapter 
5 for more information on the Youth Advocates.    

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
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2. Clinical and organisational audits
There are two separate datasets for Round 3 of the Epilepsy12 audit. The organisational audit covers 
the configuration of Trust- or Health Board-level services and workforce in paediatric epilepsy. The 
clinical audit is patient-level descriptions of clinical care. 
The measures and analysis used in Epilepsy12 are directed by our Epilepsy12 Methodology and Dataset 
Group, which brings together a range of clinical, patient and parent, and statistical experts. The 
measures used in Epilepsy12 were developed to align to national standards and guidelines, including:
•	
Epilepsies: diagnosis and management (2012) NICE guideline CG137,
•	
Epilepsy in children and young people (2013): NICE Quality Standard 27.

The Epilepsy12 measures and results have been reviewed to manage the risk of disclosure of protected 
personal information in the audit data. This was risk assessed on each measure, and at points in this 
report results with small numbers have been masked. Masked results have been marked with an 
asterisk (*) and footnoted.
There were 145 registered Health Boards and Trusts for cohort 2 of Epilepsy12. This had previously been 
149 Trusts and Health Boards, however the number has reduced following mergers.
Full details of the Epilepsy12 Round 3 datasets can be viewed on the Epilepsy12 website.
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
  
 
 
 
 
 
 
 
 
 
 
 
 
Care provided to 6177 children and
young people; 34% (2106) were 
diagnosed with epilepsy.
Children and young people were
referred in 2018/19 with 12 months
of subsequent care, some during the 
COVID-19 pandemic.
The patient care described is from
103 (of 145) English NHS Trusts and
Welsh NHS Health Boards.
Organisational structure data is from
119 (of 145) English NHS Trusts and
Welsh NHS Health Boards.
Figure 1: Epilepsy12 audits at a glance

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
16
Clinical audit of ‘cohort 2’
The clinical audit focuses on care provided to patients with a new diagnosis of epilepsy. Clinical audit 
data entry is prospective, with eligible patients grouped into cohorts based on when they are first 
assessed by the paediatric service. This report focuses on ‘cohort 2’ which is the second group of 
patients in Round 3 of Epilepsy12. Cohort 2 includes children and young people who had a first paediatric 
assessment for a ‘paroxysmal episode’ (or episodes) between 1 December 2018 and 30 November 2019. 
Paroxysmal episodes are any epileptic seizures, non-epileptic seizures, or seizures of uncertain origin.
Epilepsy12 follows patients for twelve months of care following their first assessment; we refer to this 
as the ‘first year of care’. Depending on when they had entered the audit, children and young people in 
cohort 2 completed their first year of care between 1 December 2019 to 30 November 2020. 
Children and young people in cohort 2 had their first paediatric assessment in 2018/19, prior to the 
COVID-19 pandemic. Some of the children and young people in cohort 2 had completed their first 
year of care prior to March 2020. However, especially for the patients with a first assessment between 
March and November 2019, the ‘first year of care’ data in this report includes care provided during the 
COVID-19 pandemic in 2020.
Electroencephalogram (EEG) services and paediatric epilepsy services provide audit data to Epilepsy12. 
These data for cohort 2 were supplied between December 2018 and January 2021. During 2020-21 the 
guidance for the NHS was to protect clinical activity, so services could pause other activities (including 
the mandatory submission of audit data) when necessary. The pandemic has, by necessity, limited the 
audit data available. As data can be entered retrospectively this also affected data about care in for 
children and young people in cohort 2 provided prior to the pandemic.
103 Health Boards and Trusts were able to submit a full first year of care clinical record for one or more 
children and young people in cohort 2. First year of care records were submitted for 6,177 children and 
young people in cohort 2.
Organisational audit - November 2020 
The Epilepsy12 audit of the organisation of paediatric epilepsy services in England and Wales focuses 
on services and workforce at Trust and Health Board level, describing a designated point in time. 
This report presents organisational data describing the services as they were in November 2020. 
At this time the NHS was dealing with a significant surge in COVID-19 cases and hospitalisations in 
both England and Wales. 119 Health Boards and Trusts were able to submit and lock their November 
2020 organisational audit data. The data were provided to Epilepsy12 between November 2020 and 
February 2021. 

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
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3. 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 2021 (clinical data) and February 2021 
(organisational data).
In previous rounds of Epilepsy12 there has been considerable variation in the ability of different 
Health Boards and Trusts in England and Wales to provide adequate workforce time and resources to 
participate in this national audit. In 2020 this has been more challenging than ever for the paediatric 
epilepsy teams. We want to recognise the dedication to children with epilepsy that has driven data 
submissions to the audit this past year, enabling insights into care during the pandemic. However, 
gaps in data entry indicate that some teams had to suspend participation completely.
Health Boards and Trusts can use audit data for benchmarking practices to identify areas to focus on 
in service improvements, share best practice and improve care outcomes. It is essential that Health 
Board and Trusts managers support and resource their paediatric epilepsy services to improve data 
completeness, ensuring an accurate reflection of their standard of care. Epilepsy12 aims to share 
performance analysis with the regulator, Care Quality Commission, and are reviewing the methodology 
and selection of measures to do so. 
Detailed results from the clinical and organisational data are available in appendices A and B. This 
includes the results of analysis for each Epilepsy12 audit measure, and analysis by country and regional 
epilepsy network areas. 
There are 12 ‘Performance Indicator’ measures which were derived from national guidelines and 
recommendations. The performance indicators measures are:
1.	
Input into care from a paediatrician with expertise in epilepsies,
2.	 Input into care from an epilepsy specialist nurse (ESNs),
3.	 (a) Appropriate tertiary input into care, and (b) appropriate epilepsy surgery referral
4.	 Appropriate first paediatric assessment,
5.	 Recorded seizure formulation,
6.	 Access to electrocardiogram (ECG),
7.	 Access to magnetic resonance imaging (MRI),
8.	 Accuracy of diagnosis,
9.	 (a) Discussion of the risks where sodium valproate is used in treatment for girls aged 9 and over, 
and (b) girls and young women prescribed sodium valproate
10.	 Comprehensive care plan that is updated and agreed with the patient,
11.	 Documented evidence of all key elements of care planning content,
12.	 Record of a school individual healthcare plan.
Figure 2 shows the proportion of care which met the criteria of each indicator, for children and young 
people with epilepsy in cohorts 1 and 2. Patients in cohort 2 completed their first year of care between 
1 December 2019 to 30 November 2020. Patients in cohort 1 did so a year earlier, between 1 December 
2018 to 30 November 2019.

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
18
Overall the results for the two cohorts are similar, which highlights both consistent areas of strength 
as well as continued scope for improvement in aspects such as input from ESNs, comprehensive care 
planning, access to epilepsy surgery services, and school epilepsy care plans. 
 
 
 
 
 
 
 
 
 
 
32%
70%
65%
48%
71%
98%
71%
65%
91%
61%
23%
52%
73%
87%
32%
70%
62%
40%
100%
97%
69%
68%
88%
62%
30%
59%
69%
88%
0%
20%
40%
60%
80%
100%
12. School Individual Healthcare Plan:
11. Comprehensive Care Planning
content:
10. Comprehensive Care Planning
agreement:
9b. Sodium Valproate all females:
9a. Sodium Valproate females
           9 years old and greater:
8. Accuracy of diagnosis:
7. MRI:
6. ECG:
5. Seizure Formulation:
4. Appropriate first paediatric
assessment:
3b. Epilepsy Surgery referral:
3. Tertiary involvement:
2. Epilepsy nurse specialist:
1. Paediatrician with expertise:
E12 performance indicators by Cohort
Round 3 Cohort 1
Round 3 Cohort 2
Figure 2: Epilepsy12 performance indicators in England and Wales (Round 3 Cohorts 1 and 2)
These performance indicators 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 results of both the 
clinical and organisational audits. They were developed with a multi-disciplinary group of members of 
the Epilepsy12 Project Board, the Methodology and Dataset Group, and other audit stakeholders who 
met online to review the data analysis.

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
19
Mental health support
Mental health care
5% (68/1358) of children and young 
people, between the age of 5-15 years 
and diagnosed with epilepsy, had an 
identified mental health condition.
5%
Mental health screening
17% (20/119) of Health Boards and 
Trusts have formal screening for 
mental health disorders.
17%
S.D.Q
SCREENING
Paediatric 
Neurologist
There were very few children and young people with an identified mental health condition in cohort 2, 
despite research1 suggesting a higher incidence of mental health problems among children and young 
people with long term conditions. An earlier study reported 37% of 5 to 15 year olds with epilepsy had 
a co-existing mental health condition. While co-located mental health care is recommended as best 
practice, few paediatric epilepsy services had been able to achieve this.
Few of the Health Boards and Trusts had a formal screening process for children and young people 
receiving care from the epilepsy team. Without wide-spread use of screening, opportunities for referral 
into the appropriate pathway for assessment could be missed. 
An integrated approach to psychosocial support is important to help children and young people 
manage a long-term condition like epilepsy. In Chapter 5, the Epilepsy12 Youth Advocates have 
highlighted ways that services can support and signpost children and young people to help with their 
worries and anxieties.  
The findings for cohort 1 and cohort 2 were very consistent, however there is a significant concern 
about increased longer-term  psychological impacts of the COVID-19 pandemic for children and young 
people. 
•	
36% (43/119) of Health Boards and Trusts did not have agreed referral pathways for children with 
mental health conditions. 
•	
7% (8/119) of Health Boards and Trusts could not refer to mental health assessment services, 
either within or outside of their Health Board or Trust. 
•	
15% (18/119) of Health Boards and Trusts facilitate mental health provision within epilepsy clinics. 
Only 11% (11/101) of Health Boards and Trusts without co-located provision indicated they had an 
action plan describing steps towards co-located mental health provision. 
•	
17% (20/119) of Health Boards and Trusts have formal screening for mental health disorders.
1	
Buelow JM, et al. (2003) Behavior and mental health problems in children with epilepsy and low IQ. Dev Med Child Neurol

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
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•	
68% (1435/2106) of children aged 3 years and over with epilepsy had evidence that emotional or 
behavioural problems were considered during their first assessment.
•	
5% (68/1358) of children and young people between the age of 5-15 years and diagnosed with 
epilepsy had an identified mental health condition.
•	
Few children with epilepsy had input into their care from mental health specialists such as a 
clinical psychologist (2%, 41/2106), psychiatrist (<1%, 7/2106), educational psychologist (1%, 
15/2106) or other mental health professional (1%, 22/2106).
There are signs that support and identification of neurodevelopmental issues are more embedded into 
paediatric epilepsy care, particularly as an area reviewed in the initial paediatric assessment. However, 
there is also limited access to formal screening. 
•	
83% (1743/2106) children and young people had evidence that description of developmental, 
learning or schooling progress was included in their first paediatric assessment for epilepsy.
•	
22% (469/2106) of children and young people diagnosed with epilepsy had an identified 
neurodisability or neurodevelopmental condition.
•	
Screening for Attention Deficit Hyperactivity Disorder (ADHD) and Autism Spectrum Disorders 
(ASD) were available in a minority of Trusts (20%, 24/119, and 19%, 23/119, respectively).
•	
80% (95/119) of Health Boards and Trusts had agreed referral criteria for ADHD, 85% (101/119) 
for ASD, 60% (71/119) had criteria for behaviour difficulties, 62% (74/119) for developmental 
coordination disorder, 56% (67/119) for intellectual disability and 8% (10/119) for other 
neurodevelopmental problems.
Recommendation 1 and 2
Health Board and Trust managers should ensure that:
•	
All children and young people with epilepsy are provided with psychosocial support 
and signposting to help them manage their condition and their related worries or 
anxieties, and
•	
All children and young people with epilepsy have ongoing screening for mental 
health problems using a validated tool as part of their routine epilepsy care. Where 
there are concerns about mental health, children and young people are referred to 
an appropriate mental health service via an agreed pathway. There should be timely 
access to diagnosis and treatment.
Hospital and community commissioners should commission increased integrated 
psychosocial and mental health support  for children and young people receiving care for 
long-term conditions. This should be co-located within the epilepsy clinic, and inclusive 
of co-morbidities.

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
21
Care planning
Specialists input
50% (59/119) of Health Boards and Trusts 
described a typical response time of the 
next weekday for specialist epilepsy 
advice between scheduled reviews.
50%
+1
DAY
Care planning key contents
65% (1379/2106) of children and young 
people diagnosed with epilepsy, had 
evidence of an updated and agreed 
comprehensive care plan.
65%
HEALTHCARE 
PLAN
Health Boards and Trusts describe providing children, young people and/or their families with contact 
details for the epilepsy service, and that typically they are able to provide specialist advice promptly 
between scheduled reviews. Patient organisations for epilepsy, as well as research undertaken with 
children, young people and their families by the Youth Advocates, emphasise the importance of 
services being responsive and having clear points of contact.
 
There was also evidence of wide-spread use of care planning for children with epilepsy, which often 
had been agreed with children, young people and their families. At patient-level we found that core 
elements of content were present in the majority of care plans. 
However, there was less consistency in care plans including all core elements of content, which meant 
our overall finding of comprehensive care planning was lower than for individual elements. There were 
apparent gaps in safety information provided in care planning: a fifth of care plans lacked evidence 
that water safety had been discussed, and a similar proportion lacked evidence around general 
participation and risk information. 
•	
All of Health Boards and Trusts, 100% (119/119) reported availability of specialist epilepsy advice 
between scheduled reviews across England and Wales. 
•	
50% (59/119) of Health Boards and Trusts described a typical response time of the next weekday 
for requests for advice between scheduled reviews. Initial specialist advice was ‘typically’ 
provided by an epilepsy specialist nurse in 50% (59/119) of Health Boards and Trusts.
•	
Comprehensive care planning for children and young people with epilepsy was reported to 
routinely take place in 90% (107/119) of Health Boards and Trusts.
•	
65% (1379/2106) of children and young people diagnosed with epilepsy, had evidence of an 
updated and agreed comprehensive care plan. 
•	
There was evidence of the plan being agreed with the child, young person, their family/carer and 
their healthcare provider in 76% (1606/2106) of care plans.
•	
92% (1927/2106) of care plans included evidence that children and young people are given 
contact details for their epilepsy service.

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
22
•	
90% (412/458) of children and young people diagnosed with epilepsy and on rescue medication, 
had a parental prolonged seizure care plan.
•	
80% xx-xxxx-xxxx) of care plans included discussion of water safety and 81% xx-xxxx-xxxx) had 
evidence of discussion regarding general participation and risks.
•	
32% (455/1402) of school-aged children and young people with epilepsy were identified as having a 
school Individual Healthcare Plan.
•	
Less than half of children and young people diagnosed with epilepsy (or their parent/carer) had 
evidence that information on Sudden Unexpected Death in Epilepsy (SUDEP) had been provided 
(43% 915/2106).
 
Recommendations 3 and 4 (repeated from 2020): 
All Health Board and Trust managers and epilepsy clinical teams should implement 
standardised approaches to epilepsy care planning content provision to ensure that 
essential elements of care are always provided for all children and young people with 
epilepsy and these are reviewed on an ongoing basis. 
Health Board and Trust managers, epilepsy clinical teams, school head teachers, and 
school nurses should agree processes to facilitate appropriate, up-to-date health care 
planning within education and two-way information sharing. 
Epilepsy12 is developing a new tool for 2021 to help teams evidence in real-time the core 
elements of care planning for the children and young people with epilepsy in their care.

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
23
Sustainable paediatric epilepsy care 
First EEG waiting times
53% (1117/2106) of children and young 
people diagnosed with epilepsy, obtained 
their EEG within four weeks of request.
EEG
request
made
53%
The children and young people in cohort 2 were 
referred and assessed prior to COVID-19 having an 
impact on NHS services. However, a proportion of 
their ongoing care took place during the two main 
waves of the pandemic in 2020. The data submitted 
to Epilepsy12 shows both signs that services have 
done very well to maintain standards given the 
challenges they have faced, as well as issues with 
‘timeliness’ of care that indicate some of the 
pressures in the system. 
Most children and young people are registered into 
the audit by an EEG service. This continues to be 
the case, but the overall proportion of Epilepsy12’s 
patient registrations coming from an EEG service 
reduced over the course of 2020. This gives a small 
indication of how significantly these vital partner 
services were impacted when face-to-face patient 
care was limited by both public-health necessity and overall healthcare capacity. Cohort 2 registration 
was relatively advanced in early 2020 because the patients included had been referred for their EEG in 
2018/19: we can expect to see additional impacts on later cohorts, many of whom were first referred 
and needed an initial EEG during 2020/21.
When considering the care and services described in this report, it is important to be aware that 
there is some data missing and that this should not be assumed as a random sample. There were 
services without any capacity to submit Epilepsy12 data this year; whether due to reduced workforce, 
redeployment of personnel and services to respond to COVID-19, or other factors. Their absence in the 
clinical and organisational data has likely influenced the results in important ways.
After coping with exceptionally difficult circumstances urgent action is needed to ensure paediatric 
epilepsy teams, and the services they rely on, have sufficient capacity and resources to build sustainable 
services, include appropriate specialities within the paediatric epilepsy team, and are able to maintain 
quality standards for children and young people in their care. 
•	
71% (103/145) Health Boards and Trusts submitted a record of the first year of care for one or 
more children and young people in cohort 2; compared to 76% (113/149) in cohort 1.
•	
There was a decrease in clinical ‘data completeness’ for cohort 2 (61%, 6177/10181) compared to 
cohort 1 (71%, 3318/4684). This is the proportion of patients registered into a cohort whose first 
year of care record was completed and submitted. 
•	
82% (119 out of 145) registered Health Boards and Trusts completed and submitted the November 
2020 organisational audit data, compared to 94% (136/145) in 2019. 
•	
There was a reduction in the proportion of new patient registrations submitted by EEG services 
in 2020. In the Epilepsy12 Round 3 data downloaded in January 2021 68% xx-xxxx-xxxx) of 
patient registrations were received from an EEG service, compared to 73% (10649/14591) of 
registrations when data was downloaded in January 2020.
•	
53% (1117/2106) of children and young people diagnosed with epilepsy, obtained an EEG within 
four weeks of request. 

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
24
•	
There were signs that children and young people were able to access appropriate investigations 
during the first year of care: 98% (2070/2106) of children with epilepsy received an EEG, 56% 
(1182/2106) had a 12-lead ECG, 12% (248/2106) had a CT head scan, 57% (1202/2106) MRI brain 
scan. 
•	
Variation in available services: 61% (73/119) of Trusts and Health Boards could provide a standard 
EEG within their location; 96% (114/119) could provide a 12-lead ECG; 94% (112/119) an ‘awake’ MRI 
or 63% (75/119) ‘with sedation’; and 23% (27/119) inpatient video telemetry or 16% (19/119) for 
home video telemetry.
•	
In November 2020, there was a defined paediatric epilepsy clinic or clinics, seeing patients at 
secondary level, in 93% (111/119) of Health Boards and Trusts. 
Recommendations 5 and 6: 
Epilepsy services should be supported by their Trust or Health Board’s management and 
the commissioning organisations to:
•	
Develop a defined epilepsy team approach to service provision and service 
improvement,
•	
Allocate time within job plans to support team functions including dedicated time 
for audit participation and related quality improvement actions. 
Hospital commissioners, NHS Regional Offices, Regional Partnership Boards, NHS 
England and NHS Wales should ensure that there is capacity to provide timely access to 
necessary epilepsy investigations (such as EEG, ECG, MRI and CT), so that children and 
young people are not disadvantaged by the variation in availability of diagnostic services 
between Health Boards and Trusts.

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
25
Specialist input into care
Epilepsy Specialist Nurses
78% xx-xxxx-xxxx) of children and young 
people diagnosed with epilepsy had input 
from an Epilepsy Specialist Nurse.
Epilepsy
Specialist
Nurse
78%
Paediatrician with expertise
87% (1830/2106) of children and young people 
diagnosed with epilepsy had input from a 
Paediatrician with Expertise.
87%
LEAD
Transition
63% (75/119) of Trusts and Health boards 
had an adult epilepsy specialist nurse 
routinely involved in the transition of 
young people to adult services.
ADULT
EPILEPSY 
SERVICE
63%
ADULT
ESN 
Epilepsy
Specialist
Nurse
During the three rounds of Epilepsy12 (2009–20) 
there has been an increase in epilepsy specialists 
employed by Health Board and Trusts, and this has 
been reflected in the records of specialist input into 
the care of children and young people with epilepsy. 
Presence of paediatric consultants ‘with expertise’ 
in epilepsy and ESNs was relatively stable between 
cohort 1 and cohort 2 (2019 and 2020 for the 
organisational data). ESNs and paediatric consultants 
with expertise play crucial roles in epilepsy diagnosis 
and ongoing care. It encouraging to see that most 
children and young people receive specialist input 
during their first year of care, but this should be 
available to all. 
It is also positive to see evidence of increased joint-
working to support young people to transition to 
adult services. In particular, Health Boards and Trusts 
reported more involvement of adult specialists in 
transition processes.
•	
78% xx-xxxx-xxxx) of children and young people diagnosed with epilepsy had an input from an ESN. 
This had been 72% (798/1112) in cohort 1. 
•	
89% (106/119) of Health Boards and Trusts had some provision of ESNs, an average of 1.3 whole 
time equivalents (WTEs) per Health Board and Trust. This was an increase from 2019 (1.2 WTEs), 
2018 (1.0 WTEs), 2014 (0.6 WTEs), and 2009 (0.5 WTEs). 
•	
Between 2018-2020 there has been an increase in the functions supported by ESNs in Health 
Boards and Trusts. This includes providing rescue medication training for parents (in 87%, 104/119, 
of Health Boards and Trusts in 2020 from 75%, 111/148, in 2018), and facilitating meetings with 
schools (86%, 102/119, of Health Boards and Trusts in 2020 from 72%, 106/148, in 2018).

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
26
•	
19% (392/2106) of 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. 87% (1830/2106)
were seen during their first year of care.
•	
97% (116/119) of Health Boards and Trusts employed at least some time of a consultant paediatrician 
‘with expertise’ in epilepsy. Health Boards and Trusts employed an average of 2.3 WTE consultants 
with expertise. This was the same as November 2019; after increasing from 2.1 WTEs in 2018 and 
1.8 WTEs in both 2009 and 2014. 
•	
60% (71/119) of Health Boards and Trusts reported having an outpatient service for epilepsy where 
there is a presence of both adult and paediatric professionals.
•	
There was an increase in adult specialists participating in transition services for young people. In 
85% (101/119) of Health Boards and Trusts adult neurologists were routinely involved in transition 
to adult services, compared to 78% (116/148) in 2018 and 84% (114/136) in 2019. 
•	
Adult ESNs were routinely involved in the transition services at 63% (75/119) of Health Boards and 
Trusts, which had been 51% (76/148) in 2018 and 54% (74/136) in 2019.
•	
66% (79/119) of Health Boards and Trusts, used structured resources to support transition to adult 
services. 
•	
86% (102/119) of Health Boards and Trusts had an agreed referral pathway to adult services.
Recommendations 7 and 8: 
All Health Board and Trust managers should employ sufficient Epilepsy Specialist Nurses 
and consultant paediatricians “with expertise” in epilepsy to ensure all children and young 
people with epilepsy can reliably receive responsive, individualised, specialist input into 
care for epilepsy and related concerns, for example, psychological and developmental 
issues.
All Health Board and Trust managers and hospital and community commissioners 
should ensure that adult and paediatric epilepsy teams are resourced to allow, and have 
time allocated in job plans, for joint transition-related clinical appointments and quality 
improvement work.

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
27
Neurology services and epilepsy surgery

Children’s Epilepsy
Surgical Service (CESS)
23% (25/107) of children and young 
people diagnosed with epilepsy who 
met surgical referral criteria, had a 
referral for surgical evaluation.
CESS Referral Criteria
23%
There was evidence that some children and young 
people who had on-going seizures, or whose condition 
did not respond to AEDs, may not be receiving 
appropriate referrals to tertiary care. 
Compared to cohort 1, a smaller proportion of children 
and young people who met surgical referral criteria or 
paediatric neurology criteria had evidence that such 
referrals were made or had been followed up with 
specialist input where appropriate. Children and young 
people are missing out on, or having delayed access to, 
epilepsy surgery and specialist neurological care.
•	 5% (107/2106) of the children and young people 
diagnosed with epilepsy, met one or more of the 
Children’s Epilepsy Surgery Service (CESS) referral 
criteria in England and Wales in cohort 2. 
•	 23% (25/107) of children and young people diagnosed 
with epilepsy who met surgical referral criteria had 
a referral to CESS for surgical evaluation during their first year of care. This is compared to 30% 
(27/89) of appropriate children and young people in cohort 1.
•	
Around half of children and young people who met paediatric neurology referral criteria had either 
paediatric neurologist input or a referral to CESS during their first year of care, 52% (243/464). 
•	
21% (447/2106) of children and young people diagnosed with epilepsy had input from a paediatric 
neurologist.
•	
95% (113/119) of Health Boards and Trusts had agreed referral pathways to tertiary paediatric 
neurology services. 
•	
There were a total of 91.1 WTE consultant paediatric neurologists providing care across England and 
Wales. 
Recommendations 9 and 10: 
OPEN UK regional networks, NHS England, NHS Wales, BPNA, RCPCH, Health Education 
England and Health Education and Improvement Wales should work together to review 
the Epilepsy12 findings in their area and ensure there are:
•	
Sufficient paediatric neurologists to provide timely assessment and ongoing 
management,
•	
Robust referral pathways to paediatric neurology such that children and young 
people are not disadvantaged by the variation in access to specialists between 
Health Boards and Trusts.
The specialist CESS centres should collectively:
•	
Review the referral criteria to ensure these are clear, consistent, and embedded in 
shared care pathways from secondary care and paediatric neurology, and
•	
Agree a communications strategy to raise awareness of referral criteria and 
encourage early referral of appropriate children and young people.


Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
28
Diagnoses and use of medications
The audit also highlighted a number of significant strengths in the care provided to children and young 
people in cohort 2. Evidence suggests a high degree of appropriate diagnosis – with most children and 
young people having a consistent epilepsy diagnosis. 
Few girls and young women in the audit cohort were prescribed sodium valproate medication. 
However in two cases, for patients aged over 9, there was not a record that the risks of sodium 
valproate medication during pregnancy had been discussed as part of a required pregnancy prevention 
programme. In 2020 the Cumberlege Review2 reported clinical harm which resulted from a lack of 
medical advice given to women about sodium valproate. The report recommended that healthcare 
professionals ensure there is a clear process to provide appropriate information to women and girls on 
sodium valproate about their epilepsy treatment and contraceptive choices.
There was significant variation in many audit measures at regional level including use of rescue 
medication, routine specialist involvement in care, and access to key investigation or screening 
services. While we do not make a national recommendation, full regional results are presented in the 
appendices. 
 
•	
34% (2106/6177) children and young people were diagnosed with epilepsy in cohort 2.
•	
98% (2081/2126) of children and young people diagnosed with epilepsy, still had that diagnosis 
after one year of care. This proportion has been increasing in every audit round.
•	
91% (1911/2106) of children and young people diagnosed with epilepsy had an appropriate seizure 
classification in the first year of care. 
•	
1703 children and young people were prescribed one or more AEDs during their first year of care. 
1661 of the children and young people prescribed AEDs had epileptic episodes. 
•	
71% (5/7) of females aged nine or above diagnosed with epilepsy and prescribed sodium 
valproate treatment, had evidence of previous discussion of risk regarding birth defects and 
neurodevelopmental risks. 
•	
22% (458/2106) of the children and young people diagnosed with epilepsy, had rescue medication 
prescribed in England and Wales in cohort 2. This varied between 5% and 41% across different 
regional networks. 
•	
In many cases paediatric epilepsy care requires access to services outside the Trust or Health 
Board: 96% (114/119) of Health Boards and Trusts were able to provide a 12-lead ECG, 61% (73/119) 
could provide a standard EEG, 16% (19/119) could facilitate commencement of a ketogenic diet, 
and 10% (12/119) provide a Vagal Nerve Stimulator procedure.
 
2	
First Do No Harm (2020) Independent Medicines and Medical Devices Safety Review

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
29
4.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 is well illustrated by the joint Epilepsy12/OPEN UK annual national conferences held 
since 2018, at which many fabulous projects and ideas are shared from across the UK. In 2020 this 
was held virtually for the first time. This brought the sector together to reflect on what Epilepsy12 
findings mean for epilepsy care; learn from their peers’ experience of delivering quality improvement 
projects as part of the RCPCH Epilepsy Quality Improvement Programme (EQIP); hear from the Youth 
Advocates’ who have been working with services to improve patient support for worries and anxieties; 
and for the BPNA and OPEN UK to reflect on their work in 2020 and future plans.
OPEN UK are working with the RCPCH to set out a strategic vision of how paediatric epilepsy regional 
networks could be commissioned, resourced and structured by NHS England to support improvements 
in the quality of care for children with epilepsies in line with the commitments to long term conditions 
set of by NHS England in the Long Term Plan (published in January 2019). The vision that we have 
set out is one which we feel could be applied to paediatric epilepsy services across the whole of the 
UK. OPEN UK will also engage with departments of health in Northern Ireland, Scotland and Wales in 
conjunction with the BPNA and RCPCH to promote it.
Understandably, with NHS England stretched to capacity responding to the COVID-19 pandemic, 
implementation of the commitments set out in the Long-Term Plan have very much slowed. Members 
of the OPEN UK Working Group remain available to work alongside colleagues in the NHS England 
Children and Young People’s Transformation Team to deliver on their vision of resourcing paediatric 
epilepsy networks drive improvements in the quality of patient care. 
The OPEN UK Working Group meetings have provided a forum for epilepsy services to share how 
they have been responding to the pandemic, and how their services were re-structured to maintain 
patient care with fewer face-to-face interactions and – at times – limited access to vital diagnostic 
investigations. Across the country new technologies were rapidly implanted, with significant 
confidentiality and safeguarding risks needing careful management. The Working Group saw that 
despite the limitations of remote clinics, some of the changes proved to be both effective and 
appreciated by families. A renewal of the focus on ensuring a national strategy, including adequate 
resourcing and support for robust clinical networks, for paediatric epilepsy, will doubtless be shaped 
in many ways by the experience of providing care throughout the pandemic with the priority being, 
as was the case before the pandemic, providing the best possible care for children and young people 
with epilepsies and their families.

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30
In 2021 the networks and OPEN UK Working Group will focus on: 
•	
Improving access to technologies and tools that provide more integrated, responsive care for 
children and families,
•	
Helping departments of health to progress a national paediatric epilepsy strategy, working towards 
robust clinical networks and stronger care pathways for mental health, tertiary care and epilepsy 
surgeries,
•	
Providing a forum for quality improvement, rapid sharing of effective practices, and collaboration 
across the country.
OPEN UK previously highlighted 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. We join the Epilepsy12 Project Board and the Youth Advocates in calling for more psychological 
support and mental health services for children and young people with long term conditions. The 
benefits of co-located mental health provision are well recognised however greater resourcing is 
required to translate this best practice standard into properly commissioned mental health screening 
and psychology support across the UK. 
Dr Richard Brown, Consultant Paediatrician, Cambridge University Hospitals NHS Foundation
Trust & Chair of the OPEN UK Working Group

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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
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

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5. Epilepsy12 Youth Advocate Clinic Chat 	 	
	
Checklist: 2020-2021 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 or interested children, young 
people and families with two epilepsy specialist nurses with support from RCPCH. They volunteer 
together to improve care for epilepsy patients and their families. 
Based on research conducted in 2018, children and young people wanted more support in helping 
anxieties and worries. In 2019 the Epilepsy12 Youth Advocates designed a self-assessment tool, a Clinic 
Chat Check List for paediatric epilepsy services, to help them think about what makes “gold standard” 
support for patients’ worries and anxieties. For more about the Clinic Chat Check List findings please 
also see the Epilepsy12 2020 combined report.
Virtual Visits
In 2020 we started with the next stage of the Clinic Chat Check List which involved visiting each of the 
eight clinics that were part of our project. Due to COVID-19 the visits were moved from physical visits 
to being virtual. The visits concentrated on: 
•	
What was going well,
•	
Ideas for change,
•	
How COVID-19 impacted services.
Between December 2020 and January 2021, the Epilepsy12 Youth Advocates ‘virtually’ visited six out 
of the eight clinics who completed the Clinic Chat Check List. Before the visit, they asked each clinic 
to send a short film to introduce their team and to show them around the clinic. The films provided an 
insight into the clinics and teams. The Epilepsy12 Youth Advocates liked: 
•	
How clinics showed them around the physical space with some focusing on what children and 
young people would see when they come in for their appointment,
•	
Clinics’ focus on explaining what would happen i.e. having their height and weight measured, EEG’s 
and meeting their consultant,
•	
Clinics showing the waiting spaces for children and older young people and consultation rooms,
•	
That all the clinics introduced many members of the team and explained their roles.

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Who was involved? 
During their visits the Epilepsy12 Youth Advocates met:
#Voicematters
2 Clinical
Directors 
7 Paediatrician
Consultant
6 Epilepsy Specialist
Nurse
1 Learning
Disabilities
Epilepsy Specialist
Nurse
1 Neurologist 
1 Transition
Epilepsy Specialist
Nurse 
1 Consultant Nurse
(Children's Rights) 
As the visits were virtual, this enabled more members of the epilepsy team to be involved in the visits. 
It was great to meet with different members of the team including Clinical Directors. The conversations 
offered an opportunity for teams to think about what they were proud of and consider plans for the 
future. 
The Epilepsy12 Youth Advocates were pleased that clinics improved their scores between their visit 
and completing the Clinic Chat Check List in 2019 due to the work that they had achieved over the last 
year. 
#Voicematters
After the visits
 
3 clinics considered themselves to be bronze- we are
doing some things really well 
 
2 clinics considered themselves to be silver - we are
doing most things really well
 
3 clinic considered themselves to be gold - we are
doing lots of things really well or some things
AMAZINGLY!
Before the visit 
 
1 clinic didn't grade themselves 
 
4 clinics considered themselves to be bronze- we are
doing some things really well 
 
3 clinics considered themselves to be silver - we are
doing most things really well
 
 
What award you would give your epilepsy service for
“Helping patients and their families who need support
with worries and anxieties linked to their epilepsy?”
 

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What did we learn? 
Epilepsy services gave great examples of a range of activities they were doing to support patients 
with anxieties and worries. The Epilepsy12 Youth Advocates heard more detail about what clinics were 
currently doing and what their plans were for the future. 
Some examples that stood out included: 
•	
An A&E referral form which includes a tick box to say they have given the patient information 
leaflets,
•	
Using the ‘Ready, Steady, Go’ transition programme and embedding the ‘Go’ section into adult 
services,
•	
Neurologists signposting patients to support for anxieties and worries. A future idea could be 
that they become an ambassador for mental health and be supported to provide mental health 
signposting information to patients,
•	
ESN-led clinics to support different conversations with patients around anxieties and worries,
•	
Websites which contain local information and resources, 
•	
Creating information leaflets based on patients’ and families’ feedback on what they would like 
to know,
•	
The ability to be able to access and contact paediatric services for the first 6 months after 
transition to adult services.
After the visits the Epilepsy12 Youth Advocates said that the things that were important to support 
with anxieties and worries were:
calmunderstanding
transition
service
additional
services
psychology
nurse
confidentiality
kind



What makes a ‘gold standard’ service for anxieties and 
worries? 
After reviewing all the visits, the Epilepsy12 Youth Advocates concluded that a ‘gold standard’ service 
for anxieties and worries linked to the patient’s epilepsy should contain: 

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
35
#Voicematters
Transition
services  
Good team
working 
Referring to
other services 
Confidentialit 
A welcoming
environment
Epileps Specialist
Nurse 
A calm, kind
& understanding
team 
Access to
information at the
right time 
Access to mental
health services
The Epilepsy12 Youth Advocates chose four top things needed to make a ‘gold standard’ clinic which 
supports patient’s anxieties and worries with their epilepsy:
1.	
Access to information at the right time,
2.	 Having an ESN who is easy to contact,
3.	 Having a calm, kind and understanding team,
4.	 Access to mental health services.	
	
	
They created some tips about important points within each theme:
1.	
Access to information at the right time
•	
Having mental health resources patients can access, 
•	
A clinic website and/or helpline,
•	
Formal information/welcome packs.
2.	 Having an ESN who is easy to contact 
•	
	Being able to contact the ESN at any time through a variety of ways,
•	
	Home visits, school visits, school training,
•	
	ESN to meet patients early after diagnosis.
3.	 Being calm, kind and understanding
•	
Listening to children and young people,
•	
Asking about mood at every appointment,
•	
	Time to voice concerns.
4.	 Access to mental health services
•	
Access to mental health services who have knowledge of long-term conditions and how they 
affect children and young people, 

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36
•	
	Information about self-referrals to mental health services,
•	
	Good access to mental health services to support children and young people with other 
aspects of their lives.
What was important to clinics? 
When talking to the clinics, topics that were important to them included: 
•	
Clear information which is accessible and is in helpful formats for patients and families (printed, 
website and apps),
•	
Having access to a range of services for mental health and wellbeing,
•	
Access to epilepsy support groups and national charity information, 
•	
Ensuring clear pathways from A&E and primary care so patients are seen quickly and feel 
supported,
•	
Patient involvement in individual care plans and school education plans.
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 
•	
Asking about mood at every appointment and allowing time for patients and families to voice 
concerns, 
•	
Clear information about self-referral pathways to mental health services and to actively promote 
them,
•	
Starting to talk about transition early (12 + years).
Might need a bit more time and planning
•	
Developing good relationships with A&E to offer support and quick referrals to clinics, 
•	
Having the ability to access children’s services for the first 6 months after transition to adult services, 
•	
Ensuring the opportunity for being referred to a variety of mental health services,
•	
Having a structured transition programme, 
•	
Meeting the adult team & ESN before transition.
After the completion of the Clinic Chat Check List project the Epilepsy12 Youth Advocates said:
“All the clinics’ approaches were different, but they all had good attitudes and 
care about patients.”
“It felt nice to give good feedback to clinics. Communication worked both ways.’
“The clinics work so hard. I think they were quite modest. I liked their ‘can do’ 
attitude.”

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37
“Before the visits I was worried they might talk in ways I wouldn’t understand, so 
it was great that we talked the same language.”
They summed up the visits with the following words: 
friendly
informative
proudsociableconfident
inclusive
sharingsupportive
chatty
calmenjoyable
What happens next? 
The Epilepsy12 Youth Advocates will provide each clinic with a summary of their visit on what we 
learnt and ideas for the future before creating a report and film which can be shared with all Epilepsy12 
clinics about our findings. We aim for the Clinic Chat Check List to be made available so that many 
more clinics can benefit from using it. We plan to use the information gathered to create new projects 
to improve care for epilepsy patients and their families. 
Newsflash… COVID-19 
The COVID-19 pandemic has had a huge impact on everyone. During the support with worries and anxieties 
project virtual visits, the Epilepsy12 Youth Advocates wanted to see how clinics were coping with changes 
due to COVID-19. All clinics expressed that it has been a challenging time but were able to recognise many 
similar positives. 
Clinics highlighted the following positives: 
•	
Clinics had to adapt and adapt quickly. This supported service redesign in action,
•	
Clinics were proud that they have met the challenge and worked as a team. They have done amazingly 
well! 
•	
It has enabled clinics to use new technology such as ‘Attend Anywhere’ and telephone appointments,
•	
Technology has supported families to send video of seizures to support diagnostics. Parents have 
become more confident in capturing seizures on film and sending them in,
•	
Clinics have had 100% attendance using phone appointments. Parents have said they like that their 
child wasn’t missing as much school or missing work themselves,
•	
Phoning helped with “did not attends” and created opportunities to talk about medication and 
compliance,
•	
It has provided quicker and more effective relationships with schools in delivering training without 

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38
travel time or costs, 
•	
Some EEGs were easier, when the adult services stopped in the first wave, as the waiting list was much 
shorter,
•	
Clinic ESN had spoken to every new patient, 
•	
Clinics have still had face to face appointments where needed. They used risk assessments and 
COVID-19 procedures. It was important that families felt safe but still had the option to have face-to-
face appointments. 
The clinics also identified some difficulties that COVID-19 presented: 
•	
Face-to-face, there was no substitute to seeing a patient,
•	
Clinics commented that ‘you don’t get the same input with young people and can’t read the room as 
well’, 
•	
Clinics missed talking to young people,
•	
Breaking bad news is difficult through a phone or video appointment,
•	
Clinics missed having toys in the waiting room. 
What was important to clinics in the future? 
•	
Focusing on creating a recovery plan which allows clinics to keep the positives, 
•	
Time to embed changes and to see what works long term,
•	
Returning to face-to-face, though clinics said they might continue with blended appointments,
•	
Clinics wanted to think about and explore other ways to see patients with disabilities online,
•	
Catching up on missed tests, 
•	
Sometimes clinics noticed that young people weren’t part of the consultation (made worse with 
telephone appointments). Clinics want to ensure they are encouraging young people to speak to them.
RCPCH &Us have done lots of work with children and young people about their COVID-19 experiences 
including:
•	
Over 100,000 views shared from under 25s about life in lockdown. You can read these at https://www.
rcpch.ac.uk/resources/covid-19-research-studies-children-young-peoples-views,
•	
A COVID Book Club Project which included a rep from the Epilepsy12 Youth Advocates, who created 
priorities for COVID-19 recovery plans. You can see their priorities at www.rcpch.ac.uk/covid-book-club,
•	
A project looking at supporting mental health in a national crisis which included a rep from the 
Epilepsy12 Youth Advocates, who created priorities for services going forward. You can see their report 
at https://www.rcpch.ac.uk/resources/covid-19-us-views-rcpch-us#supporting-mental-health-in-a-
national-crisis.
Special thanks
We want to thank all the clinics involved in the Clinic Chat Check List! 
Contact details to find out more
For more information about the Epilepsy12 Youth Advocates please visit Epilepsy12 &Us or contact 
xxx@xxx.xx.

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39
6. Epilepsy Quality Improvement 
Programme (EQIP)
Epilepsy12 quality improvement programme
The EQIP pilot was a quality improvement collaborative which was developed with epilepsy 
practitioners, ensuring that it best suits the needs of teams providing epilepsy care while also borrowing 
from a similar model delivered with success in paediatric diabetes in the UK. The programme’s aim was 
to help to build high performing ’service’ teams that worked together for continuous improvement in 
the care of children and young people with epilepsy. The 12 participant teams were given the training 
and tools to successfully develop their service to deliver highly person-centred care and sustained 
improvement in clinical outcomes for children, young people and their families.
Training facilitators of the programme supported the teams in designing, implementing and monitoring 
their projects via two-day residential training, access to online resources and monthly support calls. 
Ultimately, the programme sought to support all members of the teams to feel empowered to make 
changes, to gain leadership skills, and to spread improvement ideas in their networks.
During the programme the teams faced many challenges during the COVID-19 pandemic. However, the 
‘EQIP champions’, nominated by each team, were very impressive and determined to continue their 
participation; working with their team locally, attending the monthly programme calls, and sharing 
their teams’ progress. It was inspiring to witness the time and energy that the participant teams put 
into their projects - despite the limited time, resources, and capacity challenges that teams faced. 
Month by month the teams shared their journeys within the collaborative, learning and achieving 
together.
A learning and celebratory event for the end of the pilot programme was rescheduled and hosted 
online on Thursday 16 July 2020. Each of the 12 teams were able to come together with their peers and 
with colleagues from their Trusts and Health Boards. Teams showcased their completed improvement 
projects and reflected on their journey, sharing their lessons learnt and successes. We are very proud 
of all the teams sustaining their QI projects through such difficult times and feel truly inspired by their 
commitment. 

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40
EQIP teams and their project aims
Project Summary
EQIP team
Achieving 90% of all 14-16 year old children and young 
people with epilepsy being sent ‘Ready, Steady, Go’ 
forms.
Aneurin Bevan University Health Board
Accessing the patient voice to influence improvements 
in cross-site epilepsy care for patients and families that 
attend the epilepsy services.
Chelsea and Westminster Hospitals 
NHS Foundation Trust
Achieving 50% of patients and their families being 
signposted with Information Packs about their epilepsy 
service.
Doncaster and Bassetlaw Teaching 
Hospitals NHS Foundation Trust
Obtaining feedback from patient/families seen in 
tertiary epilepsy clinics, regarding the appropriateness of 
the time interval between follow up and appointments.
Guy's and St Thomas' NHS Foundation 
Trust
Developing an integrated care pathway for children and 
young people admitted with seizures.
Luton and Dunstable University 
Hospital NHS Foundation Trust
Improving patient experience in outpatient MDT 
ketogenic diet clinics.
Manchester University Hospitals NHS 
Trust
To achieve quality routine EEG recordings in 95% of all 
paediatric patients referred within four weeks from 
referral.
Nottingham University Hospitals NHS 
Trust
Children and young people presenting in A+E with a 
first seizure provided with telephone contact from an 
Epilepsy Nurse within two weeks of presentation.
Royal Berkshire NHS Foundation Trust
Developing and implementing a pathway for patients 
with first seizure events; and ensuring patients are 
reviewed by paediatricians with special interest in 
epilepsy.
Royal United Hospitals Bath NHS 
Foundation Trust
Implementing an ongoing feedback loop with patients 
and their families with the aim of establishing a 
feedback forum.
Southport and Ormskirk Hospital NHS 
Trust
To obtain feedback on how the epilepsy service can 
support their wellbeing from 50% of children aged 12-16 
years with a diagnosis of epilepsy attending their review 
clinic.
South Tees Hospitals NHS Foundation 
Trust
Improving epilepsy information on electronic records 
including emergency health care plans becoming more 
easily accessible via an electronic record.
York Teaching Hospitals NHS 
Foundation Trust
A supplement detailing the pilot aims, activities and outcomes is planned for later in 2021. Further 
information can be found online at www.rcpch.ac.uk/eqip 

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41
Quality improvement in response to COVID-19 
During the monthly support calls, the teams discussed the impact of COVID-19 on their paediatric 
epilepsy services. They described their responses and new processes for challenges with changes 
to contact with patients, team members’ re-deployment, and changes to work shift patterns. 
Within the initial phases of the pandemic, there was a significant drop of referrals from emergency 
care and general practice to paediatric epilepsy services. The use of technology made a big impact 
with how teams now communicate with other members of staff, as well as with patients and their 
families.
The social distance restrictions have led to teams experiencing changes that may become 
permanent and have, in some cases, introduced new ways of engaging previously ‘hard to reach’ 
children, young people and families.
The main areas discussed that teams found challenging were the following:
•	
Staffing and team availability,
•	
Use of virtual/video clinics and telephone clinics,
•	
Staff meetings taking place using technology and connecting with those working from home,
•	
Alternative communication methods,
•	
Processing and prioritising EEG referrals.
Royal Berkshire Hospital NHS Trust Foundation shared their experience responding to such 
challenges:
“The current pandemic has affected our work as an epilepsy service in a number of ways,
although within that has also demonstrated opportunities and ideas of how we can grow as a
service. The direct effect of the current descaling of services from late March 2020 onwards has
led to the following: 
•	
Cancellation of face to face outpatient clinic appointments,
•	
Inability for members of the team to have regular communications (particularly face to face),
•	
Restriction in supplementary investigations apart from in exceptional circumstances, e.g. 
EEG, blood tests and MRI brain, reduction in genetic lab testing,
•	
Restrictions to participation in audits and QI projects already in place (including EQIP).
It has forced us to make conscious changes to how we operate – the use of technology not 
previously relied on has become more prominent – the use of video consultation platforms 
has been a primary change. This has been used for various purposes – patient contact, team 
meetings, neurology outreach clinics. 
Whilst not without technical difficulties, at times we have found that it has been a positive 
experience in being able to reach out to patients and families. In being able to see patients 
and speak to them, we were able to have better interactions than having none or even having 
telephone consultations. Even from an examination perspective, there was some value in 
using the video interface. From a service provision perspective, it opens up opportunities for 

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42
expanding our service. We are now considering possibilities of ad-hoc consultations and evening 
clinics (e.g. for teenagers with epilepsy).
We have had to take a pragmatic approach given COVID-19 restrictions when having to assess 
new patients, without access to investigations and/or direct patient contact, and in some cases 
had to make diagnostic and treatment decisions. We have endeavoured to highlight these in 
our consultations with patients and their families while discussing management plans and this 
generally has gone well.
This could also have a lasting effect in terms of how we manage patients with epilepsy, 
immediate feedback is that the patient experience is maintained or enhanced with video 
consultations although we will look to better capture this with more qualitative feedback to see 
how well we are doing and where things could be improved.”
Dr Ahmed Aldouri, Consultant Paediatrician, Royal Berkshire Hospital NHS Trust Foundation
For more information on services’ responses during the COVID-19 pandemic, please visit 
www.rcpch.ac.uk/eqip 
We would like to take this opportunity to congratulate the first EQIP pioneers who 
successfully completed this pilot programme and wish them well with future quality 
improvement.

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43
7.	 Worcester Acute Hospitals Trust: using 
Epilepsy12 to drive service improvements
Presented by: 
Dr Andrew Gallagher, Consultant Paediatrician 
Ms Cheryl Byrd, ESN 
Ms Erica Brotherton, Secretary 
Ms Lydia Collins, clinical scientist neurophysiology  
Ms Kelly Bill, clinical scientist neurophysiology  scientist neurophysiology.
Background
Worcestershire has a population of 
approximately 600,000 people with 
130,000 aged 18 years or under. We have 
a 
single 
Inpatient 
Unit 
and 
neurophysiology 
in 
Worcester, 
with 
epilepsy clinics on three hospital sites 
around 
the 
county. 
The 
paediatric 
epilepsy team consists of one and a half 
consultants, a part time epilepsy nurse, 
plus much valued secretarial support. 
We 
are 
well 
supported 
by 
neurophysiology, adult neurology and 
our local tertiary and the Epilepsy 
Surgery Centre at Birmingham Children’s 
Hospital. 
Children with epilepsy in the pre-school years and those children in mainstream school are managed 
by the acute Trust, while children with a special school placement are managed by the community 
paediatric team with many appointments taking place within school. There are around 300 patients 
attending the epilepsy clinics in the acute trust with approximately three new referrals each week.
The Epilepsy12 2018 organisational audit report, published in January 2019, highlighted several 
weaknesses in our service and focused on identifying improvements based on the reports’ following 
recommendations:
•	
Recommendation 3: 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.

Epilepsy12: Combined organisational and clinical audits: Report for England and Wales Round 3 Cohort 2 (2019-20)
44
•	
Recommendation 10: Commissioners, Health Boards 
and Trusts should ensure that ongoing epilepsy care 
includes mental health assessment, diagnosis and 
treatment alongside management of seizures. If paediatric 
services do not have co-located mental health provision, 
Commissioners, Health Boards and Trusts should ensure 
they have action plans towards achieving co-located 
professionals with mental health competences within 
epilepsy clinics.
•	
Recommendation 12: Health Boards and Trusts should 
also 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 referral and handover to 
appropriate adult services. 
What we did and what we achieved
This led to the construction of an action plan with clear goals, time frames and responsibilities. The 
action plan was monitored through the paediatric directorate and Trust clinical governance structures. 
We engaged with service managers and other directorates where necessary to unblock the barriers 
to aid implementation. Agreed targets which were not attained in a timely fashion are placed on the 
Directorate Risk Register to highlight these both within and without the directorate and to keep them at 
the forefront of long-term directorate planning. 
Targets in our first action plan included improving service ‘contact-ability’ with a dedicated email address 
and a promise to return calls within three working days. We have subsequently audited service ‘contact-
ability’ and we have achieved very high levels of patient satisfaction. Auditing processes involved 
achieving high levels of patient satisfaction by incorporating the help of our secretary to send out 50 
questionnaires, plus stamped return envelopes, randomly to patients and we collated the results via our 
epilepsy database. 
Not the most scientific study ever but it was able to confirm what we thought we already knew. As a 
consequence of patients knowing we will respond quickly by phone/email, we found we can reduce the 
number of patients seen in clinic, leaving space to offer speedier appointments to see new patients or 
urgent face-to-face reviews of existing patients. We have identified the need for a second consultant 
with an epilepsy interest and a second epilepsy specialist nurse. This remains on our action plan as it has 
not been achieved and has been escalated accordingly. 
We continue to work towards achieving this goal and it has been agreed that we will be appointing two 
new consultant posts this year, so we move from 12 to 14 acute consultants. Additionally, it has also been 
agreed that one of these will be an epilepsy post and we have an ST8 with relevant SPIN training very 
interested in joining our service, so fingers crossed. In terms of the epilepsy specialist nurse, the 2019 
Epilepsy12 organisational audit, reported ‘All Health Boards and Trusts should employ sufficient ESNs to 
ensure at least 1 WTE ESN for every 250 children with epilepsy’. This was helpful, because our database 
show we are about 0.8 WTE per 275 patients at present, but this has not progressed further yet. 
It will be difficult to achieve as we would need to demonstrate a substantial need to get funding agreed; 
County paediatric epilepsy clinics.

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45
if it were a Best Practice Tariff criterion maybe we could make a stronger case. We do plan an epilepsy 
liaison post on the children’s ward for one of the band 6 nurses. This should help with aspects like 
referrals, medication training, and documentation.
The subsequent Epilepsy12 organisational audit and the results of patient data from the cohort 1 clinical 
audit, published in September 2020, added new goals to our action plan. The patients’ first paediatric 
assessment for cohort 1 were entered between July and November 2018. Their first year of care patient 
data was entered until November 2019. The clinical audit met with mixed reactions! We were proud 
of some of our achievements but disappointed with some of the clinical data. It was clear that there 
were some gaps in our service that we had not recognised, for example low ECG rates in children with 
convulsive seizures and long EEG waiting times. 
We are now focusing on trying to see new patients within two weeks, this is usually by phone or video 
consultation and we ask parents to send videos to our dedicated email address. Often, we will request 
an EEG at this stage. The patient’s first EEG is highlighted with a bright sticker to ensure that they are 
completed within a month of request. Our neurophysiology department has agreed to champion this 
goal. In addition, if the child has had a convulsive seizure neurophysiology will ensure a 12-lead ECG is 
completed at the same visit.
As part of discussions to ensure timely EEGs we have started including print outs of abnormalities seen 
on EEG along with the formal reports. We find that it is very powerful for children and their families 
to see their own spike wave discharge or centrotemporal spikes which helps with gaining a better 
understanding of the child’s epilepsy. As part of these discussions and being presented with raw EEG 
data, we have established regular EEG meetings where cases are discussed. These meetings include 
epilepsy clinicians from our community Trust, which further aids joint working and management of 
complex patients.
Cohort 1 data led us to consider whether there is a treatment gap where children who could benefit 
from tertiary centre input are not being referred appropriately. We appear to be referring patients who 
meet surgery criteria but perhaps not all those where paediatric neurology input is recommended. We 
found that in practice many of the cases had been discussed with neurology informally or via email, 
which was not captured in the audit data unless it had led to a formal referral. We reflected that these 
informal contacts were often sufficient, particularly where the purpose of further input was not clear. For 
instance, it is questionable whether an infant with well-controlled epilepsy with a known genetic basis 
needs paediatric neurology input, for example patients with benign focal epilepsy of infancy and PRRT2 
mutations.
Like many units we are struggling to achieve formal mental health screening and input. We are looking 
at increasing the use of mental health and neurodevelopmental screening questionnaires; and we have 
implemented education information forms to aid communication with schools. The Trust is also scoping 
psychology services and we are hoping for some dedicated psychology time to follow.
Based on the organisational report, recommendation 12, we interpreted this to mean we should explore 
establishing a teenager clinic. We currently have specific epilepsy clinics for children and young people of 
all ages and a transition clinic that includes adult neurology service team. We plan to start the Teenager 
Epilepsy Clinic when COVID-19 restrictions allow. This will be held in the late afternoon to avoid loss of 
school-time. Teenagers and their families would be invited to attend in a dedicated clinic area to meet 
for tea and cakes, so that young people and their families can meet others in the same situation. We will 
then see the teenagers individually as per a normal clinic.

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Lessons learnt and top tips
We have found that by focusing on small improvements and ensuring that these happen and remain 
embedded within the service, patient satisfaction and job satisfaction for professionals has increased. In 
addition, we felt the following may also be helpful tips based on our QI experience:
1.	
Phone parents as soon as you get a referral, take a history, obtain videos, decide if there is enough to 
warrant EEG or ECG – if so, arrange it there and then, provide contact details.
2.	 Show children, young people and their families their own EEG print out and scans (if abnormal); a 
picture is worth a thousand words.
3.	
Develop and maintain an epilepsy database, this can be a simple spreadsheet.
4.	 Make Epilepsy12 work for you and your patients. Trusts should be asking for and expecting action 
plans from directorates and helping us to agree and achieve our targets (make them “SMART”). 
If we cannot achieve actions due to lack of staff or resources, it needs to be escalated to clinical 
directors, managers, Trust/Health Board clinical governance divisions, children and young people 
boards, commissioners etc.
5.	
Ask for videos to be shared and make this part of the clinical record, stress the usefulness of this to 
parents when there is diagnostic uncertainty.
6.	 Meet with EEG colleagues and discuss patient cases; they value hearing about scan findings, 
genetics, and responses to treatment. You get a more responsive service.
Special thanks
None of this could have been achieved without the continued support and enthusiasm we have 
experienced from Birmingham Children’s Hospital, Neurophysiology and the Adult Neurology Service 
locally.    

Responses received from the 50 stamped addressed envelope questionnaires sent to patients and 
their families to feedback on service ‘contactability’.

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Example of the template of the school communication form.

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8.	 Summary of recommendations
Mental health
Reccommendations
1.	
Health Board and Trust managers should ensure that:
•	
All children and young people with epilepsy are provided with 
psychosocial support and signposting to help them manage their 
condition and their related worries or anxieties, and
•	
All children and young people with epilepsy have ongoing screening for 
mental health problems using a validated tool as part of their routine 
epilepsy care. Where there are concerns about mental health, children 
and young people are referred to an appropriate mental health service 
via an agreed pathway. There should be timely access to diagnosis and 
treatment.
2.	 Hospital and community commissioners should commission increased 
integrated psychosocial and mental health support  for children and 
young people receiving care for long-term conditions. This should be co-
located within the epilepsy clinic, and inclusive of co-morbidities.
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 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.
NICE Clinical Guideline 137 states that children and young people should 
have access to: written and visual information; counselling services; 
information about voluntary organisations; epilepsy specialist nurses; timely 
and appropriate investigations; referral to tertiary services, including surgery 
if appropriate.
Epilepsy12 Key 
finding(s)
17% (20/119) of Health Boards and Trusts have formal screening for mental 
health disorders.
68% (1435/2106) of children aged three years and over with epilepsy had 
evidence that emotional or behavioural problems were considered during 
their first assessment.
5% (68/1358) of children and young people between the age of 5-15 years 
and diagnosed with epilepsy had an identified mental health condition.
Few children with epilepsy had mental health input into their care: 
clinical psychologist (2%, 41/2106), psychiatrist (<1%, 7/2106), educational 
psychologist (1%, 15/2106) or other mental health professional (1%, 22/2106).
36% (43/119) of Health Boards and Trusts did not have agreed referral 
pathways for children with mental health conditions. 
7% (8/119) of Health Boards and Trusts could not refer to mental health 
assessment services, either in or outside of their Health Board or Trust.
15% (18/119) of Health Boards’ and Trusts’ mental health provision is within 
epilepsy clinics. Only 11% (11/101) of others indicated they had an action plan 
towards co-located mental health provision.
Target audience(s)
Health Board and Trust managers, epilepsy clinical leads, and hospital and 
community commissioners.

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Care Planning
Recommendations
3.	 All Health Board and Trust managers and epilepsy clinical teams should 
implement standardised approaches to epilepsy care planning content 
provision to ensure that essential elements of care are always provided for 
all children and young people with epilepsy and these are reviewed on an 
ongoing basis. 
4.	 Health Board and Trust managers, epilepsy clinical teams, school 
head teachers, and school nurses should agree processes to facilitate 
appropriate, up-to-date health care planning within education and two-
way information sharing. 
Source
NICE Quality Standard 27 (statement 4) states that children and young people 
with epilepsy have an agreed and comprehensive care plan.
NICE Quality Standard 27 (statement 6) states that children and young people 
with a history of prolonged or repeated seizures have an agreed, written 
emergency care plan.
NICE Clinical Guideline 137 states that children, young people should have 
access 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.
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 
findings 
65% (1379/2106) of children and young people diagnosed with epilepsy had 
evidence of an updated and agreed comprehensive care plan. 
There was evidence of involvement of the child, young person, or their family/
carer in 76% (1606/2106) of care plans.
80% xx-xxxx-xxxx) of care plans included discussion of water safety and 81% 
xx-xxxx-xxxx) had evidence of discussion regarding general participation and 
risks.
32% (455/1402) of school-aged children and young people with epilepsy were 
identified as having a school Individual Healthcare Plan.
43% (915/2106) of children and young people diagnosed with epilepsy (or their 
parent/carer) had evidence that information on Sudden Unexpected Death in 
Epilepsy (SUDEP) had been provided.
Target audience(s)
Health Board and Trust managers, epilepsy clinical teams, school head 
teachers, and school nurses. 

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Sustainable paediatric epilepsy care
Recommendations
5.	 Epilepsy services should be supported by their Trust or Health Board’s 
management and the commissioning organisations to:
•	
Develop a defined epilepsy team approach to service provision and service 
improvement.
•	
Allocate time within job plans to support team functions including 
dedicated time for audit participation and related quality improvement 
actions. 
6.	 Hospital commissioners, NHS Regional Offices, Regional Partnership 
Boards, NHS England and NHS Wales should ensure that there is capacity 
to provide timely access to necessary epilepsy investigations (such 
as EEG, ECG, MRI and CT), so that children and young people are not 
disadvantaged by the variation in availability of diagnostic services 
between Health Boards and Trusts.
Source
NICE Quality Standard 27 (statement 2) states that children and young people 
having initial investigations for epilepsy undergo the tests within 4 weeks of 
being requested.
NICE Quality Standard 27 (Statement 3) states that children and young people 
who meet the criteria for neuroimaging for epilepsy should have magnetic 
resonance imaging (MRI).
Current British Paediatric Neurology Association (BPNA) PET teaching curric­
ulum, states that all children with a convulsive seizure should have a 12-lead 
ECG.
Epilepsy12 Key 
finding(s)  
71% (103/145) 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 2; 
compared to 76% (113/149) in cohort 1.
There was a decrease in clinical ‘data completeness’ for cohort 2 (61%, 
6177/10181) compared to cohort 1 (71%, 3318/4684). This is the proportion 
of patients registered into a cohort whose first year of care record was 
completed and submitted. 
82% (119 out of 145) registered Health Boards and Trusts completed and 
submitted the November 2020 organisational audit data, compared to 94% 
(136/145) in 2019. 
53% (1117/2106) of children and young people diagnosed with epilepsy, 
obtained an EEG within four weeks of request. 
Variation in available services: 61% (73/119) of Trusts and Health Boards could 
provide a standard EEG within their location; 96% (114/119) could provide a 12-
lead ECG; 94% (112/119) an ‘awake’ MRI or 63% (75/119) ‘with sedation’; and 23% 
(27/1119) inpatient video telemetry or 16% (19/119) for home video telemetry. 
Target audience(s)
Health Board and Trust managers and hospital commissioners, NHS Regional 
Offices, Regional Partnership Boards, NHS England and NHS Wales.

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Specialist input into care
Recommendations
7.	 All Health Board and Trust managers should employ sufficient Epilepsy 
Specialist Nurses and consultant paediatricians “with expertise” in epilepsy 
to ensure all children and young people with epilepsy can reliably receive 
responsive, individualised, specialist input into their care for epilepsy and 
related concerns, for example, psychological and developmental issues.
8.	 All Health Board and Trust managers and hospital and community 
commissioners should ensure that adult and paediatric epilepsy teams 
are resourced to allow, and have time allocated in job plans, for joint 
transition-related clinical appointments and quality improvement work.
Source
NICE Quality Standard 27 (statement 1) states that children and young people 
presenting with a suspected seizure are seen by a specialist in the diagnosis 
and management of the epilepsies within two weeks of presentation.
NICE Quality Standard 27 (statement 5) states that children and young people 
with epilepsy are seen by an epilepsy specialist nurse who they can contact 
between scheduled reviews. 
NICE Quality Standard 27 (statement 7) states that children and young people 
who meet the criteria for referral to a neurologist are seen within four weeks 
of referral.
NICE Clinical Guideline 137 states that children, young people should have 
access 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 
78% xx-xxxx-xxxx) of children and young people diagnosed with epilepsy had an 
input from an ESN. This had been 72% (798/1112) in cohort 1. 
89% (106/119) of Health Boards and Trusts had some provision of ESNs, an 
average of 1.3 whole time equivalents (WTEs) per Health Board and Trust. This 
was an increase from 2019 (1.2 WTEs), 2018 (1.0 WTEs), 2014 (0.6 WTEs), and 
2009 (0.5 WTEs).
19% (392/2106) of children and young people diagnosed with epilepsy were 
seen by a paediatrician with expertise in epilepsy within two weeks of first 
referral in England and Wales. 87% (1830/2106) were seen during their first 
year of care.
97% (116/119) of Health Boards and Trusts employed at least some time of a 
consultant paediatrician ‘with expertise’ in epilepsy. Health Boards and Trusts 
employed an average of 2.3 WTE consultants with expertise; increasing from 
2.1 WTEs in 2018 and 1.8 WTEs in both 2009 and 2014.
Target audience(s)
Health Board and Trust managers, hospital and community commissioners.

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Epilepsy surgery and neurology
Recommendation
9.	 OPEN UK regional networks, NHS England, NHS Wales, BPNA, RCPCH, 
Health Education England and Health Education and Improvement Wales 
should work together to review the Epilepsy12 findings in their area and 
ensure there are:
•	
Sufficient paediatric neurologists to provide timely assessment and 
ongoing management.
•	
Robust referral pathways to paediatric neurology such that children 
and young people are not disadvantaged by the variation in access to 
specialists between Health Boards and Trusts.
10.	 The specialist CESS centres should collectively:
•	
Review the referral criteria to ensure these are clear, consistent, and 
embedded in shared care pathways from secondary care and paediatric 
neurology, and
•	
Agree a communications strategy to raise awareness of referral criteria 
and encourage early referral of appropriate children and young people.
Source
NICE Clinical Guideline 137 states that children, young people should have 
access 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) 
21% (447/2106) of children and young people diagnosed with epilepsy had 
input from a paediatric neurologist.
Around half of children and young people who met neurology referral criteria 
had either paediatric neurologist input or a referral to CESS during their 
first year of care, 52% (243/463). There were a total of 91.1 WTE consultant 
paediatric neurologists.
5% (107/2106) of the children and young people diagnosed with epilepsy, met 
one or more of the CESS referral criteria in England and Wales in cohort 2. 
23% (25/107) of children and young people diagnosed with epilepsy who 
surgical referral criteria had a referral to CESS for surgical evaluation during 
their first year of care. This is compared to 30% (27/89) of eligible children and 
young people in cohort 1.
Target audience(s)
OPEN UK networks, NHS England, NHS Wales, BPNA, RCPCH, Health 
Education England, specialist CESS centres and Health Education and 
Improvement Wales.  

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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.
•	
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 qicentral.rcpch.ac.uk/medsiq/
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 
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.

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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
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.
•	
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). 
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 are payment incentives 
designed to encourage best practice care and reduce variation in the 
quality of care.  
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.

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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.

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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 found. 
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.

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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 July 2021
Epilepsy12 
Combined organisational and clinical audits: 
Report for England and Wales Round 3 Cohort 2 (2019-20)