Experts By Experience Board Member
The UK Paediatric Epilepsy Programme Board is looking for new Experts by Experience!
The UK Paediatric Epilepsy Programme Board brings together patient and family representatives with charities, paediatricians, epilepsy specialists and other interested organisations to discuss challenges, issues and ideas relating to epilepsy care and service provision.
To help share the voice and views of children, young people, families and carers across the UK we are looking for:
- Three young people/young adults aged 16-23 who have their own epilepsy experience to join an existing Experts by Experience Board
- Four parent/carers aged 18+ who support a child or young person with epilepsy or supported someone who is not with us today.
The UK Paediatric Epilepsy Programme Board currently meets three times a year online or in the London office. Dates of the 2023 meetings are still to be confirmed but will likely take place May, September and November.
Epilepsy comes in many forms and impacts everyone's life in a different way. Diversity of experience is important to us, so we want to hear from everyone. Maybe you or your children:
- Have been diagnosed for years or have been newly diagnosed
- Have absence, myoclonic, tonic clonic, atypical, atonic or another type of seizure
- Have experience of having epilepsy with other conditions or disabilities
- Are seizure free or still experiencing seizures
- Have wider experience such as side effects of medication, living with epilepsy, worries or anxieties, education and transitions
Your next steps are:
Get in touch by emailing and_us@rcpch.ac.uk to share your answers to these questions (two or three paragraphs in total). Please also include your name and if you are a young person with epilepsy or a parent/carer who has supported childhood epilepsy:
- Please tell us why you would like to join the UK Paediatric Epilepsy Programme Board
- Please tell us about your epilepsy experience and your epilepsy networks that would support the work of the UK Paediatric Epilepsy Programme Board
- Please let us know about your experience of sharing views, ideas or perspectives in meetings or forums
- Please share with us what you would like to learn or take home from your role on the UK Paediatric Epilepsy Programme Board
- Finally, let us know how you found out about this opportunity to join the UK Paediatric Epilepsy Programme Board
You can also make a short video (2 minutes max) if that is easier to answer the questions or send a voice note to 07715 659 795.
The deadline for submission is 15th August 2023.
If you are selected to move on to the next stage, we will arrange a phone/video conversation with you at the end of August/early September where we will ask you some more questions about your experience, skills and hopes linked to the UK Paediatric Epilepsy Programme Board role.
If you have any questions, please get in touch with Emma Sparrow via and_us@rcpch.ac.uk or by texting 07715 659 795.
Thank you for your interest!