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MND Resource

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This resource has been developed through collaboration between the RCN, the National Hospital for Neurology and Neurosurgery and the MND Association.

The MND resource is currently under review and will be updated formally in 2024 in line with the RCN's Quality Assurance Policy.

Introduction

Motor Neurone Disease (MND) is a rare but devastating neurological condition which leads to progressive paralysis and ultimately death. An average GP can expect to see 1 or 2 cases in their career. Although it is rare many patients and doctors are both aware and fearful of it. Access an infographic from the MND Association.

After using this resource you should have:

  • an improved understanding of what MND is, and the red flags for its diagnosis
  • increased awareness of symptom management and available treatments
  • an appreciation of the importance of coordination and a multi-disciplinary approach to achieving good care for people living with MND
  • explored the importance of advance planning and timely support for changing symptoms
  • considered the impact of a diagnosis of MND on a person and their family and carers and know where to go for further information.

Motor neurone disease (MND) or Amyotrophic Lateral Sclerosis (ALS) describes a group of related diseases affecting the motor neurones in the brain and spinal cord. Messages stop reaching the muscles, leading to weakness and wasting. It affects how a person walks, talks, eats and breathes. Not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order.

Although historically people have described four types of MND, there is now an increasing belief that MND is a spectrum. The different “types” are generally referring to variable symptoms, sites of onset and rates of progression of the same disease.

Amyotrophic lateral sclerosis (ALS)

The most common form, it involves both upper and lower motor neurones. It is characterized by limb weakness and wasting. An individual may notice they are dropping things or tripping when they walk. Life expectancy is 2-5 years from the onset of symptoms.

Progressive bulbar palsy (PBP)

Affects about a quarter of people with MND. It involves upper and lower motor neurones. Symptoms may include slurred speech or difficulty swallowing. Life expectancy: 6 months to 3 years from the onset of symptoms.

Progressive muscular atrophy (PMA)

Affects only a small proportion of people and causes damage to the lower motor neurones. Early symptoms may be noticed as weakness or clumsiness of the hands or feet. On average, people usually live for more than 5 years.

Primary lateral sclerosis (PLS)

A rare form: people experience stiffness and clumsiness in the hands or legs, or speech problems. Average life expectancy is 10 years+ although it may be life-limiting.

There is currently no cure for MND, but symptoms can be managed to achieve the best possible quality of life for people living with the disease. Visit the MND Association website to read key statistics about MND.

Motor neurone disease can be difficult to diagnose as:

  • it is classified as a rare disease and not seen regularly by practitioners
  • early symptoms may be mild and hard to detect
  • an individual may wait some time before seeing their GP
  • there may be an element of waiting for symptom progression to indicate MND
  • it is a clinical diagnosis requiring the elimination of other possible conditions.

Red Flags tool

The MND Association worked with the Royal College of General Practitioners (RCGP) to create a Red Flag Tool, to support timely referrals to neurology and speed up the time to accurate diagnosis.

Diagnostic tests may include:

  • Blood tests to screen for inflammatory conditions mimicking the symptoms of MND.
  • Electromyography (EMG) – detects muscular electrical activity. When muscles lose their nerve supply, as in MND, their electrical activity is different – this test highlights abnormalities.
  • Nerve Conduction Tests: measure the speed at which nerves carry electrical signals.
  • Magnetic Resonance Imagery (MRI) scans: used to eliminate other conditions. Damage caused by MND is not shown on this scan.

Genetics

5-10% of people with MND will have a strong family history of the disease. These rare inherited forms of MND are caused by a mistake in the genetic code passed down from one generation to the next.

Limb symptoms

Graphic of man in a wheelchair

Movement and mobility are likely to be affected by MND and symptoms will progress over time, sometimes rapidly. This can impact on how people living with MND carry out activities of daily life and get around. Adaptations to the home may be required, and equipment needed to enable the person to maintain their independence for as long as possible. Thoughtful forward planning is essential.

  • Planning ahead is imperative.
  • Timely support and coordinated care provides best practice.
  • Put the person at the centre of care.

Respiratory symptoms

Graphic of pair of lungs

As MND progresses, the muscles between the ribs, and the diaphragm itself weaken, this leads to respiratory problems. Breathing issues in turn cause other symptoms, such as fatigue and breathlessness. Respiratory failure is the most common cause of death in MND. Techniques and equipment are available to help with breathing.

  • Non refreshing sleep can be an early indicator of respiratory failure.
  • Oxygen should only be given under guidance from the person’s specialist team.
  • When discussing NIV as a therapy its eventual withdrawal should form part of the conversation.

Bulbar symptoms

Graphic of hot soup in a bowl

Bulbar refers to an area at the base of the brainstem, the motor neurones from here control muscles in the tongue, pharynx and larynx. When affected by MND issues with swallowing (dysphagia) occur making it harder to eat and drink. Weakness in the tongue, lips, vocal cords and chest, can cause speech to become faint, slurred or unclear (dysarthria). Communication can become increasingly difficult as symptoms progress.

  • Voice banking is time critical – people need to complete the process while their voice is good. See if the patient is interested in discussing and if they are, make a referral to Speech and Language Therapy
  • Tube feeding is time critical – it is best carried out whilst breathing is not too compromised. See if the patient is interested in discussing and if they are, make a referral to the nutrition team.

Cognition

Graphic of human silhouette with a gauge in their head set to maximum

Some people with MND will experience changes to their thinking and behaviour. This may affect the way they take in information, process language, express emotion and react to others. Changes can be mild or barely noticeable, for others they are more pronounced and obvious.

  • Carers or family may be the first to notice changes.
  • Understand the effects on the individual so that strategies and plans can be put in place for appropriate care.
  • Support family members and carers to understand what is happening and why, this empowers them to help the person they care for.
  • The MDT is crucial to ensure broad discussion and awareness from different professional perspectives.

Planning ahead

Graphic of hourglass

MND is a life-shortening disease. Making plans for adjustment in the future includes end of life decisions – so planning ahead with MND can be emotionally challenging. Conversations with your patient on these matters may be difficult but they do ensure that the wishes of the person in your care are respected.

  • Timeliness is key to planning as MND can progress very rapidly.
  • Advance Care Planning is the responsibility of the whole multidisciplinary team.
  • Acknowledging and recording the person’s wishes gives them control of their care.
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