In parallel to the International Epilepsy Congress which took place in Dublin last September, a special Youth Summit for young people with epilepsy also took place..
The summit was arranged by our colleagues in the International Bureau for Epilepsy (IBE) and we were pleased to play a direct role in the Summit through our delegates from Ireland alongside our colleagues in Young Epilepsy (UK) and Epilepsy Connections (Scotland).
In total, 27 young people with epilepsy from across the globe took part in the summit. This included our delegation of volunteers - Jack O’Connor, Grace Darcy, Rachel Langan, Cara Martin, Lucy Prevo, Jonathon Doyle, Sophie Williams and Melissa Ryan. There was also further Irish representation with Golden Light Winner Wayne O’Reilly in attendance, as well as Lorraine Lally who was attending as part of the IBE Global Youth Group.
At the summit, which took place across three days, delegates discussed the challenges which can exist for young people with epilepsy – as well as discussing geographical differences in attitudes and experiences to epilepsy in their home countries.
The discussions and inputs at the summit have led to the publication of a special report outlining key challenges that exist globally for young people with epilepsy – with a series of key recommendations made to National Epilepsy Patient Organisations; Healthcare Professionals; Policymakers and the International Bureau for Epilepsy.
These recommendations focussed on the following key areas:
- Mental Health and Wellbeing Challenges of Epilepsy amongst Young People
- Epilepsy Information and Support for Young People
- Employment of young people with epilepsy
The report in full can be read and downloaded at the end of this article – or by visiting the International Bureau for Epilepsy website.
Regarding the recommendations made in the report, as an organisation, we were pleased to see that we are already meeting many of the recommendations that were made at the summit – such as providing epilepsy awareness training to teachers and employers or by providing support groups for young people with epilepsy– but recognise that there is much more work to be done when it comes to working with young people with epilepsy. In fact, our Strategic Plan 2022 – 2026 has highlighted increasing supports to young people with epilepsy and there has already been several service developments to this effect – with more to come in the very near future.
We look forward to continuing our supports for young people with epilepsy and we will certainly be keeping the recommendations of this report to the forefront when introducing new service developments.
We would like to take this opportunity to thank all the delegates at the Youth Summit for their work in producing this report. While we are ultimately very biased, we were extremely proud of the contributions of Jack, Grace, Rachel, Cara, Lucy, Jonathon, Sophie, Melissa alongside Wayne and Lorraine at the summit – showing what incredible advocates we have in Ireland. Thank you all for taking part in the summit and for your inputs.
Together, we can achieve a society where no person’s life is limited by epilepsy.