Let MND patients breathe

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Calum Ferguson believes people with MND in Scotland live shorter lives than in England because of poor access to ventilators

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9th May 2016 by TFN Guest 1 Comment

Following the sad news of Ronnie Corbett losing his life to Motor Neurone Disease (MND) his wife, Anne Hart, said “I would like people to know about the machine that kept him alive. It is called ResMed, a ventilator which helps people to breathe. Without that we would have lost him much sooner.”

I was diagnosed with MND in March 2010. As a 46-year-old with three young children, this was a devastating piece of news. I have been using a Nippy 3+ Ventilator, similar to Ronnie Corbett’s, since November 2012. Without this ventilator I would not have survived to see Christmas 2012.

A ventilator increases both the quality and the length of life for MND sufferers. It also enables them to breathe, talk, eat and spend valuable time with their family and friends creating precious memories.

Calum Ferguson

Calum Ferguson

Scotland is lagging well behind the rest of the UK in the provision of this essential life preserving equipment

Ventilators work by delivering air at a constant pressure through a mask to the patient with the machine able to balance out the muscle weakness caused by MND. As the patients breathing muscles continue to deteriorate the settings can be increased to provide them with much needed air.

To assess the impact of ventilation on MND sufferers’ lives, there have been a number of research studies undertaken. A key research study published in 2004 by Newcastle University compared the use of ventilation for patients who had all been diagnosed with MND for two years. One group used ventilators and the second group used only breathing exercises. The study showed that on average patients using ventilators survived over 200 days whereas those using breathing exercises only survived 11 days. 

The National Institute for Health and Care Excellence (NICE) MND guidelines for England and Wales, which were published in February 2016, have used the results of these studies to justify providing ventilators to MND patients. The NICE guidelines also stress the importance of supporting both the patient and their family in the use of this live preserving equipment. This includes training in the use of the equipment, nursing support, physiotherapy and additional equipment to maximise the benefit of the ventilator.

Given the results of these studies, the use of ventilators by MND sufferers has been increasing dramatically. In 2000, 4% of MND sufferers across the UK were using a ventilator which had increased to 13% by 2009 and 28% by the end of 2014. The May 2016 figure for Scotland is just 14%, so Scotland is lagging well behind the rest of the UK in the provision of this essential life preserving equipment. This may well be one the key factors behind the average life expectancy of a Scottish MND sufferer being 14 months compared to over 20 months in the rest of the UK.

To improve the availability of ventilators and appropriate levels of support for patients and their families I think that NHS Scotland should adopt the new NICE MND guidelines. Although ventilators may not be appropriate for everyone they would help the majority, the key thing here is that MND patients, like me, should have the choice.

Calum Ferguson has been living with MND for over 6 years and is a disabilities campaigner. Calum is raising funds for MND Scotland, CHAS and the MHF. Support him at:

JustGiving/MNDScotland

JustGiving/CHAS

GoldenGiving/MHF

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30th December 2016 by Alexandra Cuthbert

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