Delivery of non-invasive ventilation to people living with motor neuron disease in the UK

What is it about?

Background: Motor neuron disease (MND) is a progressive, fatal disease, causing weakness and wasting of muscles responsible for movement, speech, swallowing and breathing. There are limited treatment options available for MND and non-invasive ventilation (NIV) has been shown to have the largest survival benefit and can improve patients’ quality of life. NIV involves the use of a machine and a mask to support the patient’s own breathing. However, many patients are unable to gain the full benefit of NIV. Aim: The aim of this study was to map and explore the way in which NIV services are provided to people living with MND in the UK. Methods: First, we surveyed healthcare professionals working in all the specialist MND centres in the UK. We then surveyed healthcare professionals caring for people living with MND who work in respiratory services and community teams. Results: The findings highlighted that there is variation in NIV services. Whilst there is evidence of good practice in many services there is also areas that are not able to provide this high quality. Conclusion: Increased awareness of the areas that need improvement is needed to ensure all patients receive optimal care and therefore, gain benefits from using NIV.

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