Resources

Resources for healthcare professionals

Withdrawal of assisted ventilation at the request of a patient with motor neurone disease: Guidance for professionals (PDF, 1.3MB)
Association for Palliative Medicine of Great Britain and Ireland

This guidance is intended to support professionals who are involved in caring for patients with MND who choose to withdraw their NIV.

Treatment and care towards the end of life: Good practice in decision-making
General Medical Council

This guidance is intended to support professionals with caring for patients at end of life. It is based on ethical principles, principles of good practice and is consistent with laws in the UK.

Just in Case Kit (MND Association) 

Patient information about the Just in Case kit and links to how this kit can be ordered.

BTS/ICS guideline for the ventilatory management of acute hypercapnic respiratory failure in adults

This guidance is published in Thorax and provides an overview of the evidence supporting the use of NIV and invasive mechanical ventilation, and outlines good delivery of NIV and invasive mechanical ventilation for patients with acute hypercapnic respiratory failure.

Oral suction for motor neurone disease (PDF, 279KB)
MND Association

This information sheet is intended for health and social care professionals and provides support and advice on using suction as a treatment option for people living with MND.

Saliva management pathway (PDF, 279KB)
South Wales MND Care Network

Managing saliva problems in MND (PDF, 277KB)
MND Association

This information sheet is intended for health and social care professionals and provides support and advice for saliva management of people living with MND.

Clinical Saliva Scale (CSS-MND)

This patient questionnaire has developed by the University of Sheffield to monitor the severity of oropharyngeal secretions.

Managing respiratory symptoms in MND (PDF, 1.1MB)
MND Association

This information sheet is intended for health and social care professionals and covers the evaluation and management of respiratory symptoms in MND.

Guideline [NG42] - MND: Assessment and management
National Institute for Health and Care Excellence (NICE)

This guidance is published by NICE and outlines the standard care people living with MND should receive in the UK including respiratory management.

Resources for people living with MND and their family members

Advance decision to refuse treatment (ADRT) and advance care planning (PDF, 494KB)
MND Association

This information sheet is intended for people with or affected by MND and explains how to use an ADRT form.

Withdrawal of ventilation in MND (PDF, 368KB)
MND Association

This online information sheet is intended to support people with or affected by MND in the decision-making around ventilation towards end of life. This includes deciding to withdraw the ventilation.

Ventilation for MND (PDF, 457KB)
MND Association

This online information sheet provides support to people with or affected by MND by exploring what to think about when deciding whether or not to use NIV.

Support for breathing problems (PDF, 432KB)
MND Association

This online information sheet is intended to support people with or affected by MND by answering questions they may have about breathing with MND.

Publications of research findings

Gonzalez-Bermejo J, Morelot-Panzini C, Arnol N, et al. Prognostic value of efficiently correcting nocturnal desaturations after one month of non-invasive ventilation in amyotrophic lateral sclerosis: a retrospective monocentre observational cohort study Amyotroph Lateral Scler Frontotemporal Degener. 2013; 14(5-6):373-379.

Baxter SK, Baird WO, Thompson S, et al. The initiation of non-invasive ventilation for patients with motor neuron disease: Patient and carer perceptions of obstacles and outcomes. Amyotroph Lateral Scler Frontotemporal Degener. 2012; 14(2):105-110.

Rafiq MK, Proctor AR, McDermott CJ, et al. Respiratory management of motor neurone disease: A review of current practice and new developments. Pract Neurol. 2012; 12:166-176.

McDermott CJ, Bradburn MJ, Maguire C, et al. DiPALS: Diaphragm pacing in patients with amyotrophic lateral sclerosis - a randomised controlled trial. Health Technol Assess. 2016; 20(45):1-186.

O’Brien D, Stavroulakis T, Baxter S, et al. The optimisation of noninvasive ventilation in amyotrophic lateral sclerosis: a systematic review. Eur Respir J. 2019; 54(3):1900261.

Baxter SK, Johnson M, Clowes M, et al. Optimizing the non-invasive ventilation pathway for patients with amyotrophic lateral sclerosis/motor neuron disease: a systematic review. Amyotroph Lateral Scler Front Degener. 2019; 20(7-8):461-472.

Bourke SC, Tomlinson M, Williams TL, et al. Effects of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: a randomised controlled trial. Lancet Neurol. 2006; 5(2):140-147.

Musson LS, Baxter SK, Norman P, et al. Delivery of non-invasive ventilation to people living with motor neuron disease in the UK. ERJ Open Research 2022