This year, the Epilepsy12 & OPEN UK national conference was hosted in a virtual format and consisted of a mixture of presentations and workshops aimed at health professionals working to support paediatric epilepsy services and patient organisations. We aimed to amplify the voice of children and young people with epilepsies, and bring professionals together to support on the important quality improvements in care taking place in England and Wales.
Our conference aims and objectives were to:
- Understand more about current and future Epilepsy12 national audit activities
- Contribute towards the OPEN UK quality improvement agenda
- Understand the current issues within paediatric epilepsy care that are most important to children and young people
- Understand the priorities and activities of the NHS England Epilepsy Oversight Group and learn of their future improvement plans
- Facilitate a constructive discussion around the use of sodium valproate in epilepsy treatment
- Establish the challenges of SUDEP discussions in paediatric epilepsy clinical settings and identify possible solutions
- Increase the networking opportunities at virtual events
Five quality improvement poster submissions were selected to be presented at the conference, and you can download these below. The posters from the 2021 Epilepsy Quality Improvement Programme (EQIP) were also presented at the conference and these can be found on the EQIP website.
The event was chaired by Dr Richard Brown, OPEN UK Chair, and Dr Colin Dunkley, Epilepsy12 Clinical Lead, who introduced the following presentations and facilitated stimulating discussions around paediatric epilepsy care.
- Epilepsy12 Youth Advocates
The Epilepsy12 Youth advocates kickstarted the event by sharing the experiences of children and young people living with epilepsies. After conducting an enjoyable live poll with the attendees, the group described their legacy, present work and future ideas:
- Clinic Chat Checklist
- Example School Individual Healthcare Plans
- Young person and parent guide
- Epilepsy12 audit update
Dr Colin Dunkley provided an update on Epilepsy12 activities during the past year, including the publication of the 2022 annual report, and outlined the audit's project plan for round 4. Some exciting upcoming changes were also announced.
The round 4 methodology document is now live. This sets out the 10 key performance indicators Epilepsy12 will report on in the new contract, which include both new measures and ones which were carried over from round 3.
- NHS England CYP Transformation Programme - Epilepsy
Professor Simon Kenny and Dr Jaffer Ismail presented on the work the CYP Transformation Programme - epilepsy oversight group have been undertaking as part of the NHS long term plan and described the programme's four main priority areas based on the Epilepsy12 audit:
- access to mental health screening and psychosocial support
- access to tertiary services including epilepsy surgery
- transition from paediatric to adult epilepsy services
- variation in care provided.
Epilepsy12 provided the group with data packs describing 11 audit measures at trust, ICS, regional and national levels. The seven NHSE regions have been using these packs to track performance within their areas and focus their transformation work.
- Valproate use in epilepsy: Should our decision-making be different for adolescents?
Dr Georgie McKenna and Dr Anna Maw from Cambridge University Hospital outlined their research project exploring the use of sodium valproate in the treatment of paediatric epilepsy.
Their study explored the current state of decision-making around valproate within the clinical community, described the existing literature on how poor seizure control affects quality of life and mental health in adolescents with epilepsy and discussed why valproate decision-making should be different in adolescence.
- SUDEP workshop
The Experts by Experience, a group of young people and families experienced in epilepsy, introduced this workshop by sharing their personal experiences of SUDEP (Sudden Unexpected Death in Epilepsy) from a patient and parent perspective.
They were joined by Dr Elaine Hughes, Dr Rohini Rattihalli and Sammy Ashby. Elaine began by providing background information on SUDEP, before passing onto Rohini to outline a quality improvement project focusing on SUDEP which her team undertook last year as apart of EQIP. Sammy concluded the workshop by describing SUDEP Action's work, including their new checklist to help clinicians.
- OPEN UK update
Dr Richard Brown described the aims and activities of the OPEN UK Working group, including how the group have worked with the NHSE CYP Transformation Programme to influence change and improvement within paediatric epilepsy care.
Following these brilliant presentations on a wide range of relevant paediatric epilepsy topics, the chairs brought the conference to a close. The day then concluded with a virtual networking lounge where attendees and speakers could interact via video, microphone and chat functions and continue these important discussions.
The Epilepsy12 project team members are available to respond to any related queries at email@example.com or on Tel: 020 7092 6170 / 6157 / 6161 / 6056.