🖥️Online - ✅Help us improve assessments for young people with complex epilepsy
Help us improve assessments for young people with complex epilepsy
The Developmental Epilepsy Clinic at GOSH supports babies, children and young people with rare and complex epilepsy. We carry out assessments to better understand children’s development and help guide their care and support.
For some children – particularly those with severe or profound learning disabilities – clinic-based assessments can be challenging or stressful and may not reflect their true abilities. With this in mind, we have worked with parents and carers to develop a new approach. This includes simple activities that families can do at home and record on video, helping us to see children in a more comfortable and familiar environment.
We have begun piloting this approach and are now looking to improve the instructions and make them more accessible, including creating a digital version with example videos.
Parent & carer focus group
We are holding an online parent/carer focus group to gather feedback on these materials and help shape the next stage of the project.
We are particularly keen to hear from parents and carers who have children under the Neurodisability Service at GOSH.
Focus group details:
We are finalising the date and timing of this session- we will release further details soon.
If you'd like to be involved, please sign up to the event, so we know you're interested!
💻 Online
🎁 A £15 thank you voucher will be provided for your time.
Your feedback will help us make this approach as clear, accessible and supportive as possible for families.
I want to take part! How do I sign up?
New members
If you’re not already a GOSH Voice member, you first need to sign up.
Click here to fill out our application form.
Existing members
If you’re already a GOSH Voice member, great!
Step 1: Make sure you are logged into your MyImpact account (you can sign in here).
Step 2: Click ‘Sign Up’ on this event!
Questions?
If you have any questions, or need help signing up, please email GOSHVoice@gosh.nhs.uk
