LTV refers to any child who, when medically stable, continues to require a mechanical aid for breathing after an acknowledged failure to wean, or slow wean, three months after the institution of ventilation. Ventilation is delivered either via a tracheostomy tube (invasive) or via a face mask or nasal cannula (non-invasive NIV).

The aim of LTV is to improve survival and quality of life in people with conditions that have led to respiratory failure.

As of February 2021 across the South Thames Paediatric Network (STPN) there were 561 children and young people (CYP) on LTV, 463 non-invasive and 98 invasive (estimated population of 2.5 million CYP).

Across the STPN there are three specialist paediatric LTV centres (King’s College Hospital, St George’s Hospital and Evelina London / Royal Brompton) and 14 DGHs; amongst these only a minority feel confident in managing locally a CYP on LTV with an acute need.

CYP on LTV rely heavily on care provided in the community by the local borough’s community and continuing care teams.

Work on LTV has been carried out together with the North Thames Paediatric Network since 2019. The challenges identified across the STPN were consistent with those highlighted in the 2020 NCEPOD’s Balancing the Pressures report. The STPN has an LTV Steering group which has representation from both acute and community teams across the South Thames region (email england.stpn@nhs.net to find out the dates for the next meetings).