P34 Non-invasive ventilation in motor neurone disease: are we offering to all who need it?

Introduction and objective NICE (2016)1Motor Neurone Disease (MND) guideline recommends respiratory assessment should be undertaken by exploring symptoms and pulmonary function tests which includes measuring oxygen saturation using SpO2 and performing blood gas measurements. Smith et al., (2018)2 demonstrated that the NICE screening method risks missing half of the patients who have developed ventilatory failure. Our centre does not currently undertake blood gas analysis routinely if SpO2 is above the NICE recommendation. We wanted to know whether patients die without being offered NIV by following NICE recommendation. Methods MND patients referred to our centre between April 2013 to March 2018 were retrospectively evaluated using clinical records. Results 171 patients were evaluated from the registry. Among them, 94 (55%) patients had a trial or started Non-invasive Ventilation (NIV) and 76/94 (81%) managed NIV in the long term. 31 (18%) patients refused NIV and 46 (27%) patients were never offered NIV. Among the 46 patients, 15 patients are currently alive without an indication for NIV. 31 patients died without ever being offered NIV. These have been categorised in figure 1. Among these, 25 patients had no indication for NIV based on NICE guidance. 4 of these patients underwent blood gas analysis and had pCO2 of Conclusion This review demonstrates that there is a cohort of MND patients who were not offered NIV based on NICE screening guidelines and who died shortly after review. More detailed work should be undertaken to understand why patients with MND, who do not appear to need NIV die before being offered this life prolonging treatment. References NICE. ( 2016) Motor neurone disease: assessment and management. Smith, et al. ( 2018) S124 Symptoms and daytime pulse oximetry: an unreliable screen for ventilatory failure in motor neurone disease.