The NICE Guideline on Motor Neurone Disease

Professor David Oliver & Rachael Marsden on behalf of the Guideline Development Group

david-oliverDavid Oliver has recently retired as a Consultant in Palliative Medicine at the Wisdom Hospice in Rochester and is an Honorary Professor at the University of Kent. He has written and lectured widely on the palliative care of people, with neurological disease, and in particular motor neurone disease. He was Chair of the NICE Guideline Development Group for the MND Guideline.

rachael-marsdonRachael Marsden is an MND Advanced Nurse Practitioner & Care Centre Coordinator in Oxford. She was part of the MND NICE guideline development group.

In February 2016 the National Institute for Health and Care Excellence issued the Clinical Guideline 42 – Motor Neurone Disease: assessment and management. This Guideline aims to help in the care of people with MND, using an evidence based approach and applies across both community and hospital settings (1).

The main recommendations include:

Recognition and referral

  • A protocol and pathway for referral should be available in all areas
  • Awareness of possible symptoms should be encouraged – in particular the “Red Flags” suggested by the Royal College of General Practitioners and the MND Association (2)
  • If MND is suspected a referral should be made without delay
  • Information should be provided for patient and family at all stages

The impact for the patient

We know from a survey by the Motor Neurone Disease Association (MNDA) that many people are waiting over 18 months to be diagnosed. The Red Flag system suggests to GPs that if a patient has painless, progressive, weakness they should be referred directly to neurology for an urgent appointment.[1]

Information and support at diagnosis

  • The diagnosis of MND should be given by a Consultant Neurologist with the knowledge and expertise in MND
  • It is important to ensure
    • People are asked about their wishes for information and involvement of family / carers
    • Information on MND is provided as they wish
    • A single point of contact for the MND Multidisciplinary Team (MDT) should be available
    • Follow up appointment should be made with a MDT member within 4 weeks
    • A referral for social care should be made
      • If there are social care needs
      • To ensure carers are aware of Carer’s Assessment, and assessments are made financially and for care

The impact for the patient

Being diagnosed with MND can be totally devastating. It is important that the diagnosis is made by a Consultant Neurologist who is also an expert in MND and can provide up to date and accurate information on MND. The person should leave the consultation with contact details of the specialist team and enough information so that they do not feel abandoned and unsure of what to do next.

Organisation of care

  • Co-ordinated care should be provided from a clinic based MND multidisciplinary team
    • Based in hospital or community
    • Including health and social care professionals
      • With expertise in MND
      • Staff able to see people at home
    • Ensuring communication to all health and social care professionals / Family / carers
  • Co-ordinated assessments should be undertaken every 2-3 months according to the person’s needs and they could be seen earlier if there are changes in condition. If person cannot attend clinic care should be facilitated within the community. It is important to ensure all are informed of key decisions, with close liaison with General Practitioner

The impact for the patient

Due to the changing nature of the disease a patient may have more than 10 people involved in their care at any one time. These professionals should have expertise in MND care, act in a coordinated way to prevent repetition and ensure that the patient’s needs are addressed and any interventions that become necessary are organised at the correct time, to prevent unnecessary crisis arising.

Psychological and Social care

  • The MDT assessment should include discussion of the psychological / emotional impact of MND and information should be offered
  • Planning for end of life care
  • All professionals should be open to discuss end of life care whenever the person asks and provide advice on:
    – support and advice on advance care planning – including what may happen and the consideration of advance care plans
    – Anticipatory medication at home – “Just in Case Kit”()
    – Specialist palliative care involvement
    – The person’s wishes
  • Place of care
    • Place of death
    • What to happen if deterioration / other illness
      As end of life approaches:

      • Provision of additional support so family are able to reduce their caring responsibility and spend time with the person, and ensure access to equipment to help care at home

The impact for the patient

Many professional are worried about broaching to subject of dying with their patients, but by doing so, the patient is able to be in control of their lives and make plans accordingly.

Provision of equipment

  • Physiotherapy and Occupational therapy assessments should be undertaken with regular review
  • Equipment should be provided without delay to allow maximise daily living and independence
  • Equipment should be able to change as deterioration occurs and be integrated with other aids – eg AAC devices

The impact for the patient

Patients will be offered and issued specialist equipment in a timely manner and this will be able to match their changing requirements, enabling them to live their lives to their full potential and not be restrained by having to wait for the correct piece of equipment.


  • From diagnosis assess weight , nutrition and swallowing
  • If there are suspected swallowing problems ensure a swallowing assessment
  • Discuss gastrostomy early and regularly
  • If gastrostomy is needed this should be placed without delay
  • The impact for the patient.
  • If patients can stay well-nourished throughout their disease and do not lose appreciable weight there is evidence to suggest that they will stay stronger for longer.


  • Assess needs for communication, including face to face, telephone / email / social media
  • Provide equipment and ensure it is integrated with other aids
  • The impact for the patient
  • Patients & families tell us that one of their greatest frustrations is not being able to communicate effectively. With the correct aids, at the appropriate time, this frustration can be reduced.

Management of saliva problems

  • Advice on posture / diet / swallowing / oral care
  • Antimuscarinic medication trial – Glycopyrrolate / glycopyrronium bromide, Hyoscine hydrobromide
  • Injection of Botulinum toxin A into salivary glands may be considered
  • The impact for the patient
  • It should be possible to enable a patient to manage their secretions so that they are not embarrassed by drooling or distressed. Thick secretions may be more difficult to help effectively

Respiratory function

The previous Guidelines on Non-invasive ventilation have been updated and incorporated into these Guidelines (3)

  • Assessment of respiratory function should be undertaken regularly
  • Discussion of management of breathlessness, including non-invasive ventilation and medication in helping breathlessness – eg opioids
  • Offer non-invasive ventilation
    • If there is likely to be a benefit for the person
  • Before starting NIV there should be risk assessment by the MDT and Palliative care strategies should be in place – eg use of opioids and provision of “Just in case” anticipatory medication
  • Stopping NIV
  • There needs to be careful consideration of the plan to stop NIV
  • Ensure there is support from professionals who have expertise in stopping ventilation, using palliative medication, supporting the person, family /carers / health and social care professionals and the legal and ethical aspects
  • The impact for the patient
  • This guideline now encourages discussion about planning for the future and also how to support people living with MND, and their families, when they wish to use NIV and to withdraw from using this NIV if this is their wish

Cognitive assessment

  • At diagnosis or if there is a concern about cognition or behaviour explore these areas with the person and their family
  • Tailor discussions to the person’s needs, taking into account their communication ability, cognitive status and mental capacity
  • The impact for the patient
  • There was a time when MND was thought to be just a muscle wasting disease. However now professionals are more aware of how cognition can be affected in MND and how important it is to understand how this can impact on a person’s care and their family

There has also been an Economic assessment of the Multidisciplinary Team Clinic approach and this was found to cost effective. These recommendations now need to be implemented. Over the coming months all involved in the care of people with MND will need to assess how they comply with the Guidelines and look at the changes that may be necessary.


  1. National Institute for Health and Care Excellence. Motor neurone disease: assessment and management. NICE Guideline NG 42. NICE 2016.
  1. Motor Neurone Disease Association/ Royal College of General Practitioners
  1. National Institute for Health and Clinical Excellence. Motor neurone disease. The use of non invasive ventilation in the management of motor neurone disease. NICE Clinical guideline 105 NICE 2010.