Mother stays awake for 60 hours as son's care breaks down

Available for over a year

The family of a Leicestershire man with complex medical needs say they're being let down by the system which helps care for him. 24 year old Declan Spencer has a severe and progressive muscle wastage condition known as Duchenne muscular dystrophy and is unable to move unassisted. He needs round the clock support, a ventilator to breathe, and lives with chronic heart and respiratory failure. At least 16,000 people in England and Wales are in a situation like Declan's, having their long-term care in their own home. His mum Alex says they often have to fill in when specialised staff aren't availiable. Ady Dayman talks to Adam Eley - a BBC Reporter who's spent nearly a year with the family to see how they were coping, and talks to Declan's Mum Alex. Declan's NHS Continuing Healthcare scheme (CHC) team said they "always ensure a patient's health care needs are met", but cannot always commission the support families would prefer. It had offered to find Declan a temporary place in a care home, which the family declined, saying a suitable location with staff trained on ventilators would not have been possible at short notice.