Publications and Resources
Helpful resources for health professionals involved in MND care.
NZ Best Practice Recommendations for the Management of MND
The first-ever New Zealand based best practice recommendations (BPRs) for the management of MND published by Motor Neurone Disease NZ.
NZ Problem-Solving Approach to MND
Problem-solving approach to assist health professionals involved in MND care. Covers aetiology and treatment, dysarthria, pain, dysphagia and nutrition, equipment and more. Published by Motor Neurone Disease NZ in 2021.
'Red flags' tool for GPs
A diagnostic tool highlighting motor neurone disease ‘red flags’ has been developed for GPs in New Zealand. The diagnostic tool 'Painless, progressive weakness – Could it be MND?' (PDF) asks GPs to refer relevant patients to a neurologist, thereby reducing inaccurate referrals and speeding up time to an accurate diagnosis. The tool outlines MND signs and symptoms including bulbar and limb features, respiratory and cognitive features, as well as supporting factors that point towards a diagnosis of MND.
Goodfellow Unit online resource
A useful online resource for GPs and primary health care teams, with the MND module recently updated (2017). You need to register to view (only an email address and password are required).
MND Australia Resources
MND Care Australia
MND Australia has developed a website specifically for professionals involved in the care of people with MND: MND Care Australia. This is an evidence-based and best practice website for health, disability, aged and community care professionals.
In 2011 MND Australia also developed the MND Aware online training sessions, which provide health and community care professionals with a basic understanding of MND and the impact of MND on an individual’s life.
MND UK Resources
The MND Association of England, Wales, and Northern Ireland dedicates a section of their website to health and social care professionals who provide care and support for people with MND.
'Messages for Professionals from People with MND' is a worthwhile read.
Best Practice Guidelines
The National Institute for Health and Care Excellence (NICE) Guidelines are the authoritative best-practice guidelines for assessing and managing motor neurone disease, produced in the UK.
These aim to improve care from the time of diagnosis, and cover information and support, organisation of care, managing symptoms, and preparing for end of life care. These guidelines are reviewed regularly.
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MND Canada Resources
In November 2020, the first-ever ALS Canadian Best Practice Recommendations were published in the Canadian Medical Association Journal.
International Alliance of ASL/MND Associations
The Alliance is a global network of ALS/MND associations informed by PALS/CALS, that builds capability for its members and connects to external stakeholders. We help members thrive by adding value to existing and future associations through curation and creation of information and by acting as a global gateway through which Alliance Members, PALS and CALS, internal, and external stakeholders connect.