Mandatory Epilepsy and Seizure Awareness for All Families of Children with Learning Disabilities

 

Children and adults with learning disabilities—especially those with severe or profound needs—are at a far higher risk of developing epilepsy than the general population. About 1 in 5 people with a learning disability will develop epilepsy, and for those with severe or profound learning disabilities, that risk rises to up to 1 in 2. In comparison, epilepsy affects only about 1 in 100 people in the general population. Families like mine are directly impacted. My daughter, who has profound and multiple learning disabilities, suffered her first seizure without warning after 18 years of appointments with professionals. No one ever told me that epilepsy was so common in children like her. Countless other families remain unaware of this risk until they face a terrifying emergency.

 

If this situation continues, families will continue to be left unprepared, unable to recognise the signs of a seizure or know how to respond. The result is needless panic, increased danger for our children, and greater trauma for everyone involved. If we act now and make epilepsy awareness and first aid a standard part of support for families from the point of diagnosis, lives can be saved, emergencies better managed, and children with learning disabilities will receive safer, more informed care.

 

A UK study from the University of Hertfordshire found that epilepsy is at least twenty times more common in people with intellectual disabilities. Yet this information is not shared with families. We need action now to make it mandatory for all health, education, and social care providers to inform families, provide clear information and training, and develop emergency plans for those at risk. Too many families—like mine—find out about this risk only after a terrifying emergency.

Please help support this petition and protect vulnerable children and families across the UK. Thank you. 

References:

University of Hertfordshire Review

https://www.intellectualdisability.info/physical-health/articles/epilepsy

 

Epilepsy Action:

https://www.epilepsy.org.uk/living/epilepsy-and-learning-disabilities

Epilepsy Society:

https://epilepsysociety.org.uk/about-epilepsy/what-epilepsy/learning-disabilities