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 there has been opportunity to present the work at British Thoracic Society and home ventilation group meetings nationally. The Guidance is already endorsed by Hospice UK and the RCN and the GMC have affirmed it is consistent with standards of good practice. Broader endorsement is being sought to safeguard patients and families and support professionals.

The Guidance calls for ongoing collation of a core dataset

This 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 here Audit of Process and Outcomes. Data can be submitted by downloading and completing the PDF or contacting the Secretariat for a word or spreadsheet version to complete electronically.

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

Please contact Compleat Secretariat for the Word and Excel versions of these documents.

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