Key messages in MND

So you’ve come to the end of this resource, and although you may find that caring for someone with MND is exhausting both physically and emotionally, you have the skills and ability to improve their quality of life.

In addition to this, it is important to always be honest with yourself and don’t be afraid to admit it if you feel out of your depth. You can always get support from a peer or colleague if you need to talk about a certain issue, and refer to the additional materials and research sections in this resource for extra reading.

Key points to remember

• there is no cure for MND
• MND is a rapidly progressing disease and you need to be adaptive in your care. Look for short term solutions, whilst working on the longer term strategies
• the person with MND may understand more about the condition than you do
• put the person at the centre of all care decisions
• respond to each person compassionately and with dignity and respect, even if they are not your direct responsibility. This applies to the person at the end of their life, those close to them and their carers
• check that each person’s understanding reflects what they have been told
• establish a person’s wishes and avoid assuming a lack of capacity without careful assessment
• advanced care planning is really important and should be discussed early on in the diagnosis
• the NMC Code of Practice says nurses “must recognise and respond compassionately to the needs of those who are in their last few days and hours of life” (NMC, 2015)
• it is ok to admit your lack of knowledge of MND. You will learn more from openly discussing the condition with the person and your colleagues
• remember to involve the family and key carers in any important decisions.

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.

Genetics

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 mndconnect@mndassociation.org.

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 professionalsabout diagnosis, treatment and care of people living with MND.