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Warning: Contains references to descriptions of severe self harm triggered by his neurological condition.

Getting a good education is notoriously difficult for children with special educational needs and disabilities (SEND). The Government itself admits it is an ‘adversarial process’ for families, with many facing a postcode lottery. Today two mothers are sending a warning letter to Sajid Javid, the Health and Social Care Secretary, and the Education Secretary Nadim Zahawi, on why this issue needs urgent attention. One of those women is Patricia Alban-Stanley – who tragically knows what can happen in extreme circumstances.

Her 13 year old son Sammy was autistic and had a rare genetic neurological condition of the brain called Prader-Willi Syndrome. He died 2 years ago after falling off a harbour wall. Patricia described him as a sweet, beautiful boy who loved woodwork, crafts, learning to play the piano and who had been in the school play shortly before he died. The life threatening episodes were consistent with his Prader-Willi syndrome and only happened when he became heightened.

The coroner at his inquest issued a warning predicting similar deaths could happen again if children like him are excluded from getting the right support. Ö÷²¥´óÐã Radio 4’s Woman’s Hour’s reporter Carolyn Atkinson spoke to Patricia.

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