Exploring MND experiences

People living with Motor Neurone Disease (MND) are very much involved in research at LOROS.  Read more below or look at our latest MND Research newsletter.


Exploring MND experiences

We are working closely with Dr Ellie Wilson at the University of Nottingham to exploring the experiences of families and health professionals supporting a patient who needs help with breathing through a ventilator.

In our work we are exploring, from the perspective of the patient, their health professionals and close family the issues related to using ventilation and to its withdrawal of at the request of a patient with MND.

Motor neurone disease (MND) is a progressive neurological condition which affects the function of skeletal muscle, over time affecting respiratory muscles and most deaths in MND are due to respiratory failure. Some patients with MND choose to use non-invasive ventilation (NIV) to improve their quality of life but neurological deterioration is relentless for patients and if nothing else happens, patients will eventually reach a point at which they cannot move or communicate and are kept alive in a so-called ‘locked in’ state.

The UK NICE guidance identified the lack of evidence on providing information to family and patients using ventilation in relation to end of life care.


Outcomes and Publications from our work

The findings of our  work exploring experiences of  withdrawal of ventilation have led to National Guidance for professionals published by the Association for Palliative Medicine of Great Britain and Ireland in November 2015.

There is a multi professional group continuing to collate information about withdrawal of ventilation to make further recommendations for the care of patients and their families. Please contact Professor Faull for more information.


Faull C, Wenzel D. Mechanical ventilation withdrawal in motor neuron disease: an evaluation of practice. BMJ Support Palliat Care. 2020 May 21:bmjspcare-2019-002170. doi: 10.1136/bmjspcare-2019-002170. Epub ahead of print. PMID: 32439630.

Withdrawal of Assisted Ventilation at the Request of a Patient with Motor Neurone Disease: Guidance for Professionals. Version 1.0 November 2015. Association for Palliative Medicine of Great Britain and Ireland.

Phelps, K., Regen, E., Oliver, D., McDermott, C. and Faull, C. (2015).Withdrawal of ventilation at the patient's request in MND: a retrospective exploration of the ethical and legal issues that have arisen for doctors in the UK. BMJ Supportive & Palliative Care, pp.bmjspcare-2014-000826.

Faull, C., Rowe Haynes, C. and Oliver, D. (2013).Issues for palliative medicine doctors surrounding the withdrawal of non-invasive ventilation at the request of a patient with motor neurone disease: a scoping study. BMJ Supportive & Palliative Care, 4(1), pp.43-49.

OLIVER, D. FAULL, C. (2013) Non-invasive ventilation in amyotrophic lateral sclerosis/motor neurone disease. Minerva Pneumologica, March; 52(1):p.27-38

Faull C, Rowe-Haynes C, Phelps K, Regen E, Oliver D, McDermott C. 2012. Withdrawal of Ventilation at the Request of a Patient with Motor Neurone Disease. A Retrospective Exploration of the Experience of Doctors, Non-Medical Health Professionals and Close Family.

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