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The Association for Palliative Medicine of Great Britain and Ireland (APM) has recently published Guidance for Professionals to support their practice in a very challenging area of care.1 The Guidance has been endorsed by the Motor Neurone Disease Association, the Royal College of Nursing, the Royal College of Physicians of London, the Royal College of General Practitioners and Hospice UK, and is consistent with General Medical Council (GMC) standards of good practice,2 and is compatible with coronial law and principles. It has resulted from original research from Faull et al3 in Leicester which explored the experiences of families and healthcare professionals and found that while there were examples of good practice, there was considerable variation in care and evidence of poor outcomes for patients, families and the professionals involved.4 ,5
Motor neurone disease (MND) is a fatal neurodegenerative disease. Although there is variation in the way MND first affects people and the pattern and speed of progression of muscle weakness, at some point almost all patients will have weakness of respiratory muscles. The most frequent cause of death is respiratory failure secondary to impairment of the respiratory musculature, usually within a few years of onset of the illness.
Non-invasive-assisted ventilation (NIV) is a medical treatment that can improve quality of life, symptoms and survival in selected patients.6 The guidance from the National Institute for …
Contributors CF and DO have jointly written the editorial.
Funding Motor Neurone Disease Association (Faull/Apr12/6389).
Competing interests DO was chair of the NICE Guideline NG42 Motor neurone disease; assessment and management. CF was funded by the MNDA and LOROS hospice, Leicester to undertake the research which informs the APM Guidance. CF Chaired the APM Guidance development group and is lead author.
Provenance and peer review Not commissioned; internally peer reviewed.