National Institute for Health and Clinical Excellence (NICE)
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Draft guidance from NICE hopes to help people with motor neurone disease breathe more easily

The National Institute for Health and Clinical Excellence (NICE)is currently developing guidance for the NHS on the use of non-invasive mechanical ventilation for people with motor neurone disease. The draft recommendations are now available on the NICE website for public consultation.

Respiratory problems are the main cause of death for people with motor neurone disease as the muscles weaken and breathing gets increasingly difficult; over time many patients have to use non-invasive mechanical aids, such as nasal masks and mouth pieces to support their breathing.

Non-invasive ventilation has been shown to improve the symptoms of respiratory impairment, as well as cognitive function and overall survival.

The draft guideline from NICE looks at the use of non-invasive ventilation for patients with motor neurone disease; in particular, how healthcare professionals should identify and monitor respiratory impairment, when they should consider offering non-invasive breathing support and when to discuss end-of-life care.

Dr Fergus Macbeth, Director of the Centre for Clinical Practice at NICE said:  "Respiratory impairment is a very common problem for people with motor neurone disease; however, there are currently no clear guidelines for the NHS outlining how it should be identified and managed, or when non-invasive ventilation should be offered.

"So that we can ensure our final guideline is of the highest standard, we are encouraging comments from our stakeholders and the public during this consultation period. As treating motor neurone disease requires a multidisciplinary approach, we particularly welcome feedback from all professionals involved in the care pathway, as well as from those with motor neurone disease and their carers."

Professor Colin Blakemore, President of the Motor Neurone Disease Association, said: "Non-invasive ventilation can significantly improve the quality of life for many of those who suffer from motor neurone disease. People living with MND, together with their families and carers, will benefit from NICE developing these new draft guidelines for non-invasive ventilation. We hope that the definitive NICE guidelines will ensure that this proven clinical benefit is made available to all patients who need it."

The draft recommendations are available on the NICE website at: http://guidance.nice.org.uk/CG/Wave20/52. Anyone wishing to submit comments on the draft guideline is invited to do so via the NICE website by 23 March 2010. 

NICE will then publish its final recommendations in July 2010.

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