Useful information

Useful information

As you have learnt, MND is complex and the care provided must be sensitive to the needs of the individual. You might find the below resources useful.

NICE guideline

The National Institute for Health and Care Excellence (NICE) provides national guidance and advice to improve health and social care. A guideline for MND was published in February 2016 and it sets out in detail what good care looks like and how it should be delivered.

Care pathways

Most research on MND has focused on the medical aspects associated with the condition. This study looks at how motor neurone disease is experienced from the perspective of those with the condition or their family and carers.

An evaluation of care pathways is available to adults with, and the families or carers of, adults with Motor Neurone Disease in Scotland.


There is further research into causes and genetic factors.

Cognitive and emotional

The ECAS tool can be found online along with guidelines and a training video. Completion of ECAS training is certified through ENCALS (European Network for the Cure of ALS).

MiND-B is a simple tool for the identification and quantification of behavioural symptoms in ALS is available to download.

M-ACE is a brief and sensitive cognitive screening tool for dementia, it is not specific to MND is available to download.

The Alzheimer’s Society has a practical toolkit for health professionals which assesses cognition in older people.

Emergency Care guide

This guide is for professionals in acute, urgent and emergency care and is designed to give succinct guidance on actions to take and things to consider when treating someone with the condition.

MND Connect helpline

The MND Connect team offers information and support on all aspects of the disease, including symptom control, practical management, improving quality of life, clinical research and signposting to other organisations. The service is for people living with MND, carers family members, and health and social care professionals. To contact please telephone 0808 802 6262 or e-mail

Professionals’ forum

The MND Association’s Professionals’ forum provides a secure area for health and social care professionals who work with people affected by MND to share expert information, experiences and to support each other with the challenges of working with people affected by MND.

Research into MND

The MND Association funds and promotes research that leads us to new understanding and treatments, and brings us closer to a cure for MND.

RCN resources

Our RCN End of Life Care resource and RCN End of Life Care Nutrition and Hydration might be useful to you.

The MND Association website has a range of patient information which you may find useful to direct your patients to. The Association also has further detailed information for professionals about diagnosis, treatment and care of people living with MND.

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