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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.