Any child who, when medically stable, continues to require a mechanical aid for breathing – both tracheostomy and NIV – after an acknowledged failure to wean, or slow wean, three months after the institution of ventilation.
Children and young people with LTV require high-resource intensity and multidimensional care to manage one or more chronic conditions-related needs in the context of developmental, social, and psychological needs. STPN and NTPN tertiary centres’ current caseload of LTV patients is 1,065 out of ~1.5 million CYP. However, national data from PICUs shows 50% (£115m) of specialised resources was used by 10% of CYP who had complex care needs, including LTV. Furthermore, the number of babies initiated to LTV and surviving to adulthood is increasing rapidly in response to improvements in neonatal and paediatric care. Complex CYP have led to a shift in the role of PICUs from caring for acutely ill children to inpatient management of long stay patients (***).
To sustain a regionally consistent and joined up approach – from decision to initiate up to transition to adult services, which puts the child and the family’s safety and experience at its centre while optimising the use of level 3 critical care for children with the greatest need.