For acute, urgent and emergency care staff
Motor neurone disease (MND) is a progressive and terminal disease that attacks the motor neurones, or nerves, in the brain and spinal cord.
As most people with MND are cared for at home, if an acute incident occurs, they will need to access crisis intervention services.
Our guide for professionals in acute, urgent and emergency care is designed to give succinct guidance on actions to take and things to consider when treating someone with the condition. It is endorsed by the Royal College of Emergency Medicine.
Key points when you have a patient with MND
Patients with respiratory failure due to chronic neuromuscular weakness (seen in MND) will rapidly retain carbon dioxide. Supplementary oxygen therapy can have a serious detrimental effect in people with MND, reducing respiratory drive and worsening their condition.
Oxygen therapy (unless as a palliative measure, which may be appropriate) should be used with great caution in patients with MND-related respiratory problems and monitored by arterial blood gas analysis.
Seek guidance from the specialist palliative care team or a respiratory consultant with links to neurology.
Check for the following documents in the person’s records:
- Emergency healthcare plan
- Advance care plan – this includes preferences for care, including place of care and end of life decisions
- Advance Decision to Refuse Treatment (ADRT) – if the person has created and signed an ADRT, this must be considered
- Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) – the person may have specified a DNACPR, which must be considered
- MND Alert Card or Understanding My Needs – these include key contacts and information about their care team and the specialist help they may need.
Does the patient use a non-invasive ventilator?
If airways are clear, reapply non-invasive ventilation (NIV) to treat breathlessness.
Does the patient have capacity to make key decisions for themselves?
See our information on cognitive change.
Is the patient pyrexial and taking riluzole?
Check full blood count (FBC) for signs of neutropenia and liver function tests (LFTs) for sign of disturbance, especially alanine transaminase (ALT).
The patient may not be able to lie flat for x-rays/scans
This is due to decline of respiratory function in MND.
Locate the next of kin
If next of kin is not present, every attempt should be made to contact them in case crucial decisions need to be made. Once located, take account of their insight into the person’s condition and care needs.
Does the patient have an enteral feeding tube?
This will affect decisions around administration of medication (including route and type) and fluids.
Consider the administration route of any drug you choose to prescribe
Especially if the patient has swallowing difficulties and no enteral feeding tube.
Contact your local MND care centre/network for specialist advice and support
Where available, contact the specialist team in your hospital or local area. See details of MND Care Centres and Networks.
Find out more
You can read more and find references for the above information in our guide:
Contact our helpline MND Connect if you have any further questions about MND.
We have a range of information resources on topics related to MND, for people with and affected by MND and for health and social care professionals.