The benefits of non-invasive ventilation systems

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Ahead of the Westminster Hall debate on the availability of non-invasive ventilation (NIV) to persons with motor neurone disease, Farah Nazeer at the Motor Neurone Disease Association writes about the benefits of NIV to patients with motor neurone disease.

Few conditions are as devastating as Motor Neurone Disease (MND). In the majority of cases it is rapidly progressive, always fatal and kills five people everyday in the UK.

It leaves people locked into a failing body, unable to move, speak or eat normally. The intellect and senses usually remain unaffected. There are around 5,000 people living with MND in the UK. Half of the population with the disease die within 14 months of diagnosis. There is no effective treatment.

Ventilatory failure arises from respiratory muscle weakness. It is the most common cause of death in MND and is frequently preceded by sleep-disordered breathing (SBD). SDB is associated with considerable morbidity, causing disturbed sleep, severe daytime sleepiness and headaches, reduced appetite and cognitive impairment. Some people with MND have reported daytime hallucinations as a result of severely disturbed sleep.

Non-invasive ventilation (NIV) is a system of pumping air (not oxygen) into the lungs.

Clinical research has shown that NIV significantly improves quality of life and extends survival in MND.

Quality of life for people with MND is improved by increasing blood oxygen levels leading to significantly higher quality sleep, fewer daytime headaches and increased appetite. Clinical research published in 2006 showed that NIV increased median survival in MND by seven months in a randomised controlled trial.

In a complementary prospective study, NIV increased survival in MND by almost 11 months. In contrast, Riluzole - the only drug licensed to treat MND - extends life by three months on average.

In January 2006, the MND Association suggested NIV to the National Institute for Health and Clinical Excellence.

It was considered a high priority by NICE (scoring 4 ½ out of 5 at NICE’s Consideration Panel for topic selection). However NICE will not be issuing guidance until 2011.

It is unacceptable that it could take five years to produce guidance for this vital treatment for this fatal disease. Over 8,000 people will have died from MND in this time; many denied access to this life-extending treatment.

Currently only 3.5 per cent of people with MND receive NIV. The MND Association believes it is vitally important that everyone with MND has access to NIV.

The human cost in terms of life extension and quality of life by denying access to this vital treatment for so many people with MND is enormous.