Motor neurone disease advice ‘hugely significant’

Access to the full content of this site is available only to registered healthcare professionals. Register to read more

New evidence-based guidelines on motor neurone disease will have a ‘hugely significant’ impact on patient care, according to a national charity.

The guidance, published this week by the National Institute for Health and Care Excellence (NICE) and developed by the National Clinical Guideline Centre (NCGC), has been welcomed by the Motor Neurone Disease Association (MNDA).

Sally Light, Chief Executive of the MNDA, commented on the news: ‘The MND Association strongly welcomes the publication of the NICE guideline on MND. This long awaited guideline has come about after more than four years of campaigning by the Association and our supporters.’

She went on: ‘It is a hugely significant document that sets out in detail what good care looks like and how it should be delivered. It will shape future care and have a huge influence over the quality of life for people living with MND and their families and carers.’

The guideline aims to improve and standardise care for people with motor neurone disease and presents recommendations on the following key areas:

  • timeliness of diagnosis
  • communicating with patients and their families about the diagnosis
  • the prognosis and ongoing care
  • symptom management, psychosocial support and identification of social care needs for patients and their carers
  • managing the stopping of non-invasive ventilation
  • preparing for the end of life.

Dr David Oliver, Consultant in Palliative Care and Chair of the guideline development group, commented: ‘The guideline will enable all people with MND across the country, whether in hospital, at home, in a care home or hospice, to receive care that is co-ordinated, consistent, comprehensive and responsive to their needs, that will improve their quality of life and support them, and their families. The challenge is now to see the recommendations put into practice in services across the country.’