Published Online First

Objectives To identify the number and current location of all children receiving long-term ventilation (LTV) in the UK, and to establish their underlying diagnoses and ventilatory requirements. Design Single time-point census completed by mem-bers of the UK LTV working party using an electronic-based questionnaire Subjects All children in the UK at home or in hospi-tal who, when medically stable, continue to need a mechanical aid for breathing following a failure to wean beyond a 3-month period. Results 933 children under the age of 17 years in 30 regional centres were identifi ed as receiving LTV. 88 children (9.5%) required continuous positive pressure ventilation by tracheostomy over 24 h, while 658 received ventilation while asleep only. Most children are ventilated by a non-invasive mask (n=704; 75%) or tracheostomy (n=206; 22%). Underlying conditions included neuromus-cular disease (n=402; 43%), chronic respiratory (n=343; 37%) and central nervous system conditions (n=168; 18%). 129 (14%) children were aged 16 or over. 844 (91%) children were cared for at home with only 49 children listed as being in acute hospital units (n=34) or paediatric intensive care units/high dependency units (n=15). Conclusions The last 10 years has seen a very signifi-cant increase in the number of children requiring LTV in the UK with an increasing number cared for at home. This refl ects both improving technology and increasing clinical expertise in paediatric non-invasive ventilatory support, and a continuing change in attitude towards long-term support, particularly in children with neuro-muscular diseases. There are a substantial number of children who soon will require transition to adult ser-vices, yet few such services currently exist