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Nathan is 12 years old and dependent on ventilation 24 hours a day following an accident two years ago. He is quadriplegic, uses an electric wheelchair and needs help with all aspects of personal care. He lives at home with his mum and older brother; his father left the family soon after Nathan’s accident.
Recent advances in practice have increased survival rates in infants and children following premature birth, critical illness and accidents, but some remain dependent on technologies such as ventilation, dialysis, artificial feeding and oxygen therapy.1,2 In addition, such technologies are increasingly used by children with congenital anomalies and progressive life-limiting diseases—for example, cystic fibrosis and muscular dystrophy. Thus, illness trajectories in these children have been extended beyond our current range of knowledge and experience. It is now common that such “technology-dependent” children require a high cost package of support services, sometimes delivered in partnership with the private sector, to enable them to live or continue living at home.3,4
When Nathan attended a routine six month outpatient appointment at the regional hospital, his mother told the consultant respiratory paediatrician that she was depressed and found it hard to cope. She wanted the paediatrician to organise additional hours of respite care so that she could have more time to herself away from the family home. Nathan reported that he was feeling well on his current level of ventilation and had not been readmitted to hospital during the previous 12 months.
At the time Nathan received a complex package of services from the National Health Service, social services, local education authority, private sector and several parts of the voluntary sector. A diagrammatic representation of Nathan’s entire care package is shown in fig 1.
The total package cost £210 500 for the previous 12 months at 2002 …
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