Boy with rare illness has no school place - mother

Samantha Rodger-Smith, seen here with Finley, said she was devastated at the lack of support

The mother of a boy with a rare condition that includes severe epilepsy has said she is giving up work to home school him from September, because he lost a school place after Kent County Council failures.

Samantha Rodger-Smith said Finley, 11, who has Dravet Syndrome, could have gone to St Nicholas School in Canterbury, a school for children with profound and multiple learning difficulties.

But she said delays in submitting his paperwork to a panel meant he lost the place and it was suggested he attend a mainstream school with no medical provision.

Kent County Council (KCC) said it did not comment on individual cases, but it took very seriously its part of the responsibility to ensure children have access to education which supports their special educational needs and disabilities.

'Badly failed'

The family have said Finley has a defibrillator with him 24 hours a day.

Ms Rodger-Smith, from Reculver, said: “I’m absolutely devastated and appalled at the lack of support, communication and funding that’s out there for children with Finley’s needs.

“Obviously, I understand he’s not the only child, but he has been failed massively."

She said she was told to reapply in 2025.

Garon Phelps, Finley’s grandfather, said: "The specialists at the London hospitals have said the school that he was supposed to be going to is the specialist school he needs to be at, for his needs, for the fact that he has to have a defibrillator with him 24 hours a day."

He said: "Finley and Sam have been really badly failed."

A KCC statement said: “While a school named on a child’s Education, Health and Care Plan may agree to admit a pupil with more complex needs, the local authority has to pay regard to the school’s capacity to ensure the efficient education of others.

“When the school preferred by parents is unable to offer a place, we are then obliged to consult with other schools, and alternative provision is provided in the meantime."