Withdrawal of Assisted Ventilation at the Request of a patient with Motor Neurone Disease

The APM have published Guidance for professionals in this complex area of care. Many of you will have contributed either to the research or the consultation about this work which was lead by Christina Faull.

The Guidance was developed by a multi professional and inter speciality group and is endorsed by the RCP, Hospice UK, the MND Association and the GMC have affirmed it is consistent with standards of good practice. The Guidance has been reviewed by the medico-legal secretary of the Coroners’ Society of England and Wales for compatibility with coronial law and principles.

The Guidance calls for ongoing evaluation of a core dataset and the outcomes from 46 patients were published in 2020 Mechanical ventilation withdrawal in motor neuron disease: an evaluation of practice | BMJ Supportive & Palliative Care

This ongoing audit aims to include patients with a breadth of diseases that require assisted ventilation and is not restricted to those with MND. Further information and instructions for this can be seen in the Audit of Process and Outcomes below.

Data can be submitted by downloading and completing the Word document. Please contact Compleat Secretariat if you require a spreadsheet version.

Once completed please email to christina.faull@nhs.net or post to Professor Christina Faull, LOROS, Groby Road, Leicester LE3 9QE

The Secretariat also holds a list of people with experience who would be willing to support anyone who is undertaking this with a patient. Please contact Compleat Secretariat for a copy of this list.

APM Position Statement
Neuro-muscular Disease
Withdrawal of Assisted Ventilation
Process and Outcomes