Epilepsy12 and OPEN UK national conference 2023 resources

The sixth annual Epilepsy12 and Organisation of Paediatric Epilepsy Networks (OPEN UK) national conference took place on Wednesday 27 September 2023. You can find conference resources and more information about the event on this page.

A table with Epilepsy12 leaflets, reports, and lanyards laid out

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About

The sixth Epilepsy12 & OPEN UK national conference was hosted on 27th September 2023 in a novel hybrid format, chaired by Dr Suresh Pujar. We had an overwhelming response of over 900 participants who registered to attend the event. Of these, more than 500 attendees joined us live, both in-person and virtually.

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.

We were privileged to be joined by representatives from Young Epilepsy and the Association for Young People's Health, who showcased their invaluable work through interactive in-person and virtual booths.

Melanie David-Feveck on stage at the Epilepsy12 conference.

At the conference, we proudly featured four quality improvement poster submissions were selected to be presented at the conference. You can download these below. Furthermore, the posters from the 2023 Epilepsy Quality Improvement Programme (EQIP) shared learning event were presented at the conference and these can be found on the EQIP website.

Watch the presentation recordings

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Conference programme

Epilepsy12 Youth Advocates

The Epilepsy12 Youth Advocates kick-started the event by sharing the experiences of children and young people living with epilepsies. After conducting an enjoyable live poll with attendees, the group described their legacy, present work and their priority areas for 2023/25:

- Mental health - parents, carers, siblings, and friends
- Building independent skills for young people/adults with epilepsy
- Raising awareness of the Epilepsy12 Youth Advocates programme and resources
- Visiting services, charities and clinics

They also spoke about the work RCPCH&Us are doing with paediatric epilepsy services to develop their practice in listening to the voice of children, young people and families in their services.

Watch their presentation here.

Epilepsy12 Audit Update

Dr Colin Dunkley provided an update on Epilepsy12 activities during the past year, including the publication of the 2023 annual report, and showcased how the audit has improved since it's first round in 2009.

Niky Raja then unveiled some exciting new changes to the audit platform and provided a walkthrough of the Epilepsy12 frequent reporting dashboard.

Watch their presentation here.

Epilepsy Quality Improvement Programme (EQIP) Update

Melanie David-Feveck, project manager of the Epilepsy Quality Improvement Programme (EQIP), outlined the EQIP and how teams are supported with their quality improvement projects.

She highlighted EQIP's achievements to date and provided compelling case studies of successful EQIP teams.

Watch their presentation here.

Mental Health Intervention for Children with Epilepsy

Dr Isobel Heyman introduced the Mental Health Intervention for Children with Epilepsy (MICE) project, a randomised controlled trial of psychological intervention for CYP with epilepsy.

Keep an eye out for further information on the trial outcomes!

This recording of this presentation has not been made publicly available, but you can view the slides below.

NHS England CYP Transformation Programme

Dr Jaffer Ismail presented on the work of the NHS England CYP Transformation Programme, offering insights into upcoming projects for 2023/24, including mental health and epilepsy specialist nurse pilots.

He also announced the National Bundle of Care for CYP with Epilepsy, due to be shared in October 2023.

Watch their presentation here.

Genomics Workshop

Nicole Bateman spoke about her personal journey as a parent, and offered guidance for clinicians on supporting families of CYP undergoing genomic testing.

Dr Alasdair Parker, Dr Amy McTague, Dr Bina Mukhtyar outlined their work and the current landscape of whole genome sequencing for CYP with epilepsy.

Watch their presentation here.

OPEN UK Update

Dr Richard Brown, chair of the OPEN UK working group, brought the day to a close with a call to action for clinicians, encouraging them to engage with their ICBs and to use their levers to drive positive change.

Watch their presentation here.