»Ê¼Ò»ªÈË

We are no longer accepting data submissions to the cohort 3 and 2021 organisational audit. Many thanks for your participation. 

COVID-19 update

Despite the unprecedented challenges of COVID-19 and the temporary suspension of audit entry, the Round 3 Epilepsy12 national annual reports for Cohort 1 and Cohort 2 were successfully published in September 2020 and July 2021 respectively. 

In May 2021, HQIP updated their guidance to mandate a restart of NCAPOP data collection (which includes Epilepsy12) for England. The . Cohort 3 data collection is underway and will be published in Summer 2022.  

We would like to thank services for their continued efforts to both provide care to children and young people with epilepsies throughout the pandemic, and work to improve this care by participating in the audit. 

National Data Opt Out implementation (England only)

From 31 July 2022 all healthcare providers in England that participate in the Epilepsy12 audit must comply with the National Data Opt Out. This has been extended from 31 March 2022, and previously from 30 September 2021.

NHSX and NHS Digital have written a letter explaining this opt out deadline extension - download letter below.

• Patient data entered into the Epilepsy12 audit is subject to the Opt Out.
• Each patient’s NHS Number ³¾³Ü²õ³ÙÌýbe screened against the National Opt Out list at NHS Digital prior to ²¹²Ô²âÌýof their data being entered onto the Epilepsy12 platform.
• Please check with your Trust's Information Governance team for the local arrangements by which the screen should take place.
• You can also view out and from NHS Digital.

Organisational audit and Trust profile

Data collection for the 2021 organisational audit component closed in mid January 2022.

For reference, the dataset and user guide for data entry can be found in the Downloads box below. And, clinical lead, Dr Colin Dunkley, introduced this phase in this short video:

'How to' videos - organisational audit

Clinical audit

Data collection for the round 3 cohort 3 clinical audit component closed in mid January 2022.

For reference, you can download our introduction to the clinical audit phase in the Downloads box below - this summarises the aims and processes that underpin this phase of the audit.

Participating Health Boards and Trusts across England and Wales were able to identify and register eligible patients onto the audit data platform and record details of their First Paediatric Assessment and the First Year of Care that follows that initial assessment.

EEG services play a key role in the audit as they can also register patients onto the data platform following a referral for a first EEG after a first paediatric assessment.  

In this video, Kelly St Pier, Neurophysiology Clinical Scientist and Immediate Past Chair of the Association of Neurophysiological Scientists (ANS), explains how EEG services are involved in the audit.

And, this video shows you how to register patients via EEG Services.

'How to' webinars

On 20 February 2019, we hosted the second part of what we hope will be a series of live webinars designed to help clarify aspects of the audit methodology and data platform functionality.

The webinar can be viewed in full again here:

During this initial webinar the project clinical lead, Dr Colin Dunkley, and members of the project team, guided people following online through the following topics:

• Recap of clinical audit aims
• Update on activity so far
• Involving your team in data entry
• Cohorts – where do they fit in?
• Using the clinical case management screen
• Introduction to the Overview dashboard
• Recap of First Paediatric Assessment & First Year of Care forms
• Transferring patients from one Trust to another
• Platform reporting functions– what are they and how to use them
• NHS England & NHS Wales monitoring and regulatory processes

On 24 September 2018, we hosted the first of what we hope will be a series of live webinars designed to help clarify aspects of the audit methodology and data platform functionality.

The webinar can be viewed in full again here:

During this initial webinar the project clinical lead, Dr Colin Dunkley, and members of the project team, guided people following online through the following topics:

• patient eligibility criteria
• consent
• user types and permissions
• how to register a patient (both as an EEG user and as a Health Board/Trust user)
• how to verify a patient as a Health Board/Trust user
• how to add and complete the First Paediatric Assessment form
• how to add and complete the First Year of Care form
• how to access and use Individual Patient timeline and Care Planning Reports

Trust quality account information

The information below may be used to support Trusts in England for their Trust Quality Account submission.
2021-22 audit 

• Annual data submission deadline – 11 January 2022 (for clinical audit patient ‘Cohort 3’ & 2021 organisational audit)
• Participation - paediatric services within Health Boards and Trusts in England and Wales
• Coverage - Patients with a paediatric assessment for a first suspected seizure episode (or episodes), followed for 12 months of subsequent care
• Number of patients entered - Please contact the clinical lead at the service - we cannot publish numbers until after the national report release.  
• National report publication date - July 2022 (tbc)

Contact

The Epilepsy12 project team members are available to respond to any related queries at: epilepsy12@rcpch.ac.uk or on: 020 7092 6170 / 6161 / 6056 / 6157.