An exhausted family placed their terminally ill daughter into a hospice for a few day’s break but the woman died when care staff failed to connect her breathing ventilator properly, an inquest heard. Emily Bushaway, 21, died after she suffered respiratory distress and turned blue, the hearing at Oxford Coroner’s Court was told. Emily lived with the rare genetic condition, Niemann-Pick disease type C (NPC), which left her unable to talk and needing a wheelchair to move around.

She suffered from the debilitating illness, along with her youngster sister Sarah, who were both cared for by their parents. The sisters would be placed in respite care to allow relatives a break. Emily needed a ventilator to support her breathing after a bout of pneumonia left her lungs damaged when she was 18. A valve in the ventilator had to be regularly changed as nurses assured the family they could cope with the extra care, the inquest heard.

However, when Emily’s father and grandfather arrived to take her home her lips and nails were blue and and a piece of the ventilator valve was missing, the court was told. She was taken to hospital where she suffered a cardiac arrest and died. Coroner Darren Salter today heard how the family desperately asked nurses at the Helen and Douglas House Hospice where part of the ventilator valve called a whisper was. They were said to have been met with the remark “what’s that?”