Background Chronic respiratory failure can be managed in the community using non-invasive ventilation (NIV) or long-term tracheostomy ventilation (LTTV). Patients unable to travel can be supported in the community by specialist clinicians.

Aim Evaluate a regional home ventilation service to understand the complexity of community support provided.

Methods Single-centre retrospective observational study 2020-23. Primary cause of respiratory failure, age at referral, sex, ventilator support, residence, hospital distance and date of death were recorded. Data presented as number (%), mean±SD, median (IQR).

Results 222 patients under follow-up. Cause of respiratory failure and age at referral: amyotrophic lateral sclerosis (ALS) 55 (25%) 62.4±14.3, other neuromuscular disease 47 (21%) 62.4 (44.3-68.8), brain injury 37 (17%) 46.4±16.5, spinal cord injury 32 (14%) 52.8±17.0, obesity-related 28 (13%) 63.5±13.3, COPD 13 (6%) 65.8±13.2, chest wall deformity 5 (2%) 66.3 (41.5-78.6), parenchymal lung disease 5 (2%) 70.9 (57.0-82.0). 126 (57%) female. LTTV 111 (50%), NIV 104 (47%), secretion management only (mechanical insufflation-exsufflation or mini-tracheostomy) 7 (3%). Of 213 ventilated patients, 122 (57%) 24-hour usage, 69 (32%) nocturnal, 22 (10%) nocturnal with day periods. 154 (69%) nursing home residents, 68 (30%) at home, 21.0 (9.6-54.7) km from St Thomas? Hospital. 44 patients died in 2020, 52 in 2021, 57 in 2022, ALS was the most common cause of respiratory failure amongst those who died.

Conclusion Ventilated patients with neuromuscular disease most commonly require community support and represent the largest proportion of deaths. This may be due to ventilator dependence and rapid disease progression.