Epilepsy12 & OPEN UK National Conference 2021 resources

The fourth annual Epilepsy12 & Organisation of Paediatric Epilepsy Networks (OPEN UK) national conference took place on 14 September 2021. Over 150 health professionals came together to discuss improving paediatric epilepsy care. This was the second conference successfully hosted in an online format.

Information and resources from the event can be accessed from this page.
Epilepsy12 conference leaflets

About

The conference presented a mix of workshops and symposia 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
  • Identify future quality improvement opportunities in Technology and innovation through discussion with hospital staff, parent/carer organisations and children & young people
  • Understand the current issues within paediatric epilepsy care that are most important to children and young people
  • Learn about how to get involved in a new Epilepsy12/OPEN UK Quality Improvement training initiative

This year we used an online platform to host the virtual conference, as pictured below. Keep reading to find out more about the presentations and breakout rooms.

Epilepsy12 online platform
Epilepsy12 online platform

Programme

The event was chaired by Dr Alastair Parker, President of the British Paediatric Neurology Association, who facilitated stimulating discussions around the current state of paediatric epilepsy services and how these can be improved in future.

Alastair opened the conference by introducing the programme, speakers and aims of the event, followed by an introduction to Epilepsy12, OPEN UK and paediatric epilepsy services in England and Wales.

In an inspiring presentation, our Epilepsy12 Youth Advocates shared real life experiences of children and young people living with epilepsies. In true youth advocates style, the group brilliantly kept the audience on their toes by utilising digital resources to request real-time feedback on various topics.

The presentation ended with an encouraging quote describing the children and young people’s excellent efforts this past year despite the unprecedented challenges of COVID-19:

Despite everything, we did it!

An update on the clinical and organisational components of the Epilepsy12 audit was provided by the project’s clinical lead, Dr Colin Dunkley, consultant paediatrician. Colin summarised the results of the 2020 national combined report, highlighting the differences in epilepsy care by age, sex, deprivation and by geographical regions. The other highlights of the presentation included and insight into Sherwood Hospital’s use of digital apps, the creation of the Epilepsy12 live dashboard, the innovative NHSE funded API project and the steps being taken to reduce the data burden of the audit.

After a short break, the conference proceeded with audience members rotating between three interactive breakout rooms. You can read more about the thought-provoking epilepsy topics below. 

Technology innovation in epilepsy care

Professor Sameer Zuberi, Consultant Paediatric Neurologist, Royal Hospital for Children, Glasgow

Sameer described the innovative technology entering the epilepsy world and highlighted how the advancements have created new opportunities for healthcare. For examples, family and friends of children and young people with epilepsy can now directly record seizures on their phones which has helped clinicians more accurately diagnose epilepsies.

Mental health research - MICE study update & PAVES data

Sophie Bennett, Clinical Psychologist, GOSH and Dr Ailsa McLellan

Sophie shared an update on an Epilepsy research study being conducted by a multi-disciplinary team of researchers at University College London (UCL); Mental Health Intervention for children with Epilepsy (MICE). MICE aims to improve the treatment of mental health disorders in young people with epilepsies by testing the efficacy of an evidenced-based psychological treatment. You can find out more on their website.

Ailsa also described a pilot project exploring the psychological services integrated into a paediatric epilepsy clinic: Psychology Adding value – Epilepsy Screening (PAVES). The PAVES approach enables mental health disorders to be identified in children and young people with epilepsies and promotes appropriate intervention at early stages.

Both of these research studies have great potential to improve the mental health care and the long-term psychosocial outcomes of children and young people with epilepsy.

Patient engagement led by children and young people

Emma Sparrow, RCPCH CYP Engagement Team Manager, jointly with Epilepsy Youth Advocates

The Epilepsy12 Youth Advocates continued their entertaining contributions by using real-time survey questions to gather and display audience responses on a range of topics relevant to paediatric epilepsy care. The children and young people emphasised the importance of patient engagement and eloquently described the issues most important to them.

Following the breakout sessions, Dr Richard Brown, Chair of OPEN UK, provided an update on OPEN UK’s recent activities and highlighted the challenges of the COVID-19 pandemic. Richard noted that OPEN UK have been actively involved with the NHS long-term plan and have been requested to propose a model for NHS services to start to organise co-located, specialist, routine-accessed mental health care.

Dr Parker summarised the presentations from the day, giving emphasises to the main learning points to improving epilepsy services for children and young people, and drew another successful virtual conference to a close.

Posters

You can download the conference poster submissions from the downloads section at the bottom of this page.

What would you like to see at future conferences?

Epilepsy12 & OPEN UK want to hear from you on the topics you would like discussed or presented at the next national conference, and the format you would prefer going forward! Please complete this short survey to tell us your views.