What matters to patients on Long Term Ventilation? The VIP In NIV study.

Organisation : NHS Lothian
Grant Amount : £ 28,680

People with neuromuscular disease represent a complex and vulnerable patient group. They suffer the loss of things most people say make life worth living. This can be rapid, making every day precious, or relate to a lifelong illness. Despite this, most patients try to lead active and fulfilling lives. To do so they must balance quality of life against the real risk of sudden death, especially from breathing problems.Specialist respiratory support can improve quality and quantity of life but can be burdensome. Research has focused on service provision rather than tackling the day to day problems affecting patients. The Foundation Grant would fund patient centred research determining factors which affect quality of life and aim to improve the collaborative relationship required to make ventilation a success, making the patients the VIP in Invasive and Non Invasive respiratory support.