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The seventh annual Epilepsy12 & OPEN UK national conference was hosted on 18 September 2024 in a novel hybrid format, chaired by Dr Sophia Varadkar. We had an overwhelming response of over 500 participants who registered to attend the event. Of these, 440 attendees joined us virtually and 65 in-person.
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 also be joined by representatives fromÌýYoung EpilepsyÌýand theÌýBPNA, who showcased their invaluable work through conference stands.
At the conference, we proudly featured 7 poster submissions describing local quality improvement projects.ÌýYou can download these below alongside the presentation slides from the day.
Programme
- Epilepsy12 Youth Advocates
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The Epilepsy12 Youth Advocates are a group of epilepsy experienced or interested children, young people and families who volunteer to improve care for patients and their families. At conference, the group discussed the importance of increasing the involvement of young people in shaping epilepsy services and used Menti to gather feedback from the attendees to inform their future projects by creating platforms for their voices to be heard and facilitating feedback through innovative approaches, the aim is to empower children and young people in their own care and the improvement of services.
Watch the presentation
- Epilepsy Impact & Influence Project
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Esta Orchard discussed increasing the influence of children, young people, and families in epilepsy services using the Lundy Model (Space, Voice, Audience, Influence). The project, funded by Epilepsy12/RCPCH, includes nine epilepsy services and aims to create a toolkit to improve youth participation in paediatric epilepsy care and service delivery​.
Watch the presentation
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Engagement Project in ‘Understanding experiences of CYP with epilepsy from marginalised communities’ AYPH
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Epilepsy12/RCPCH is working with the Association of Young People’s Health (AYPH) to understand and improve the unique experiences of children and young people with epilepsy from marginalised communities. Nick Morgan presented the results from the initial engagement project and provided an update on the workshops being delivered to help services engage with marginalised communities.
Watch the presentation
- Epilepsy12 Update
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Dr Colin Dunkley and Niky Raja presented the key findings and recommendations from the Epilepsy12 2024 annual report, alongside additional analyses exploring longitudinal trends. An update was provide on audit activities, including the development and improvement of the audit data collection and reporting systems.
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- The RCPCH Epilepsy Quality Improvement Programme (EQIP) Ìý
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Melanie David-Feveck presented the goals and outcomes of the EQIP, including strategies for improving epilepsy care through quality improvement initiatives. She discussed the learning and feedback from the project, which are described further in the recently published impact reports.
Watch the presentation Ìý
- The RCPCH Epilepsy Quality Improvement Programme (EQIP) QI Case Study -ÌýIndividualised Emergency Seizure Plan
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Dr Ianthe Abbey presented on the quality improvement project York and Scarborough Teaching Hospitals NHS Foundation implemented during their participation in EQIP. The team created an initiative to streamline emergency seizure plans for children with complex epilepsy by creating electronic alerts and patient-held epilepsy passports. The successes and learnings from the project were also discussed.
Watch the presentation
- The RCPCH Epilepsy Quality Improvement Programme (EQIP) QI Case StudyÌý- Mapping Transition To Make ItÌýPersonalised &ÌýHolistic
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Fiona Lead presented the quality improvement project Hull University Teaching Hospitals implemented during their participation in EQIP. The team implemented a personalised transition plan for CYP with epilepsy, and Fiona discussed the learning and feedback from this project.
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- Health Economics Unit
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Lisa Cummings and Joseph Lillington discussed the findings from a health economics research project which used Epilepsy12 audit data. They described the impact of the specialist epilepsy workforce on the care of children and young people, and how initial findings suggest epilepsy specialist nurses and consultants may improve outcomes, cost savings, and care planning, while highlighting workforce shortages.
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- NHS England Mental Health Screening Pilot
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Dr Richard Brown provided an introduction to the Mental Health screening pilot, which aims to integrate mental health screening into epilepsy care for young people. A workshop was held to discuss one teams’ experience of being part of the pilot, however this recording cannot be shared online.
Watch the presentation Ìý
- OPEN UK Update
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Dr Richard Brown provided an update on OPEN UK and used Menti to collect the views of delegates on Epilepsy12 data, clinical team composition, job plans and more, to help inform future OPEN UK projects.
Watch the presentation
CPD certificates
RCPCH approved this activity for CPD in accordance with the current RCPCH CPD Guidelines. Please email epilepsy12@rcpch.ac.uk to request an attendance certificate.
Contact
The Epilepsy12 project team members are available to respond to any related queries at epilepsy12@rcpch.ac.uk or on Tel: 020 7092 6157.