FAQs about using NIV4MND
What is NIV4MND?
NIV4MND is an online toolkit designed to support healthcare professionals who are involved in the respiratory management of people living with motor neurone disease (MND)/amyotrophic lateral sclerosis. The information is intended to support healthcare professionals to deliver non-invasive ventilation (NIV).
How should I use NIV4MND?
The information is presented along the respiratory patient care pathway. This includes before starting NIV, initiation of NIV, ongoing monitoring and optimisation of NIV and withdrawal of NIV and end of life care. Therefore, you are free to pick and choose which area(s) of the pathway you would like to find out more about. The search bar function in the top navigation bar enables you to search through the entire content quickly so you can find what you are looking for.
Links to resources such as guidelines are available on the Resources page and there are also opportunities throughout the toolkit to reflect on your current practice. Throughout the toolkit, we provide ‘good practice points’ which are top tips on best practice that can be found at the bottom of each page. We also provide a list of frequently asked questions. The videos provide real accounts of experiences of people living with MND, their family members and healthcare professionals involved in caring for people living with MND.
Who created NIV4MND?
NIV4MND was developed from our research project which involved researchers and clinicians from the University of Sheffield (Sheffield Institute for Translational Neuroscience, Department of Psychology and the School of Health and Related Research), Sheffield Teaching Hospitals NHS Foundation Trust, Leeds Teaching Hospitals NHS Trust and Guy’s and St Thomas’s NHS Foundation Trust.
Project team and their roles in the research
We are grateful to people living with MND, their family members and carers, healthcare professionals, the National Institute for Health Research, HMA and the myBreathing project team who contributed during the research project to develop NIV4MND.
How was the content formulated?
NIV4MND was developed from our research project. This project aimed to identify the best ways to provide NIV services to people living with MND in order to develop evidence-based recommendations and resources to support healthcare professionals deliver an optimal NIV service and therefore, help patients gain the maximum benefit from NIV.
This project involved systematically reviewing the current evidence base, surveying healthcare professionals across the UK, carrying out stakeholder consultations to contextualise our findings and synthesising all our findings with current guidance to create recommendations for good practice.
Who funded NIV4MND?
This project was funded by a Research for Patient Benefit Programme Grant from the National Institute for Health Research (PB-PG-1216-20041).
Who is in the videos?
The videos provide real life accounts of experiences of people living with MND, their family members and healthcare professionals who care for people living with MND.
I live and work outside the UK, will the information in NIV4MND be applicable to my practice?
The information contained within NIV4MND is based on UK practice. Laws in other countries may differ with respect to care provision and withdrawing treatment so please refer to your country’s laws and guidance.