At Young Epilepsy, we believe every child deserves full inclusion in education. This report explores the barriers and facilitators to inclusion for children with epilepsy, based on interviews with 18 children and families across the UK.
Key Barriers to Inclusion
- Misconceptions about epilepsy: Many educators only recognise tonic-clonic seizures, overlooking other types like absence seizures.
- Stigma and bullying: Children reported being excluded, teased, or misunderstood by peers and staff.
- Lack of epilepsy awareness: Teachers often misinterpret seizure symptoms as behavioural issues.
- Medical challenges: Delayed diagnosis, inconsistent treatment, and side effects of medication impact learning and attendance.
- Institutional barriers: Schools may lack policies, training, or willingness to adapt environments and activities.
- Financial strain: Families often face high costs for assessments and support, while schools may deprioritise epilepsy due to budget constraints.
What Helps Inclusion
- Effective medical care: Access to epilepsy nurses, consultants, and treatments like VNS or the ketogenic diet improves school participation.
- Supportive school staff: SENCos, inclusion officers, and trained teachers play a vital role in adapting learning environments.
- Parents as advocates: Families often become experts in their child’s condition, pushing for assessments, support, and understanding.
- Peer support: Buddy systems and awareness workshops help children feel accepted and safe.
- Access to services: Educational psychologists, therapy, and epilepsy charities provide essential support.
Recommendations
- For schools: Provide specialist epilepsy training, develop individual healthcare plans, and ensure access to educational psychologists.
- For parents: Be confident advocates, seek flexible support, and prioritise self-care.
- For healthcare professionals: Communicate with schools, consider cognitive impacts, and support integrated care.
- For policymakers: Recognise epilepsy as a special educational need and invest in early support to prevent long-term exclusion.
Conclusion
Children with epilepsy face varied challenges in education. Inclusion depends on awareness, understanding, and collaboration across health, education, and family networks. We must listen to their voices and act to ensure better futures for young lives with epilepsy.
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