Life and Breath – Worry free breathing during power failure.

Members of DMD Pathfinders, and our global social network groups, have been deeply shocked and saddened this week by the deaths of Coner Murphy and and Kyle Scolari.

A news article about their deaths can be viewed at http://www.news.com.au and across many other world news channels. A coroners report is being prepared to investigate the deaths.

Loss of power following a tornado

power lineThe two men died when a storm and tornados cut off the power supply to homes across Perth – including Beaconsfield home, where they lived.  Whilst their home had generators, these had to be started manually, and it would appear the men did not have individual back-up batteries to their ventilators.

The effect of the news on people who use ventilator and other powered medical equipment.

The way they died has effected many people and generated much discussion amongst ventilator users, their friends and families.

Pathfinder member  John Ashby expressed the views of many saying:

“The news that two Duchenne sufferers had passed away, not by this terrible disease but because of a power cut came as a shock! This tragic loss could of easily been avoided with the correct backup protocol which I think should be a mandatory necessity for anyone who requires any type of ventilation.”

If you have been affected by this news, we have many adults who use night time or 24 hour ventilation support who you can talk to on our confidential Facebook Group. To join please contact: Jon Hastie from within Facebook.

It is not the first time that people with DMD have died following power failure.  In 2009 a man died in his Pembroke nursing home following a power cut and in the US last year, two men died in California in similar circumstances. In the former, the cause of death was recorded as ‘muscular dystrophy’ and the care home was not prosecuted.

No life cut short due to power failure

Mr Murphy and Scolari where only 25, and it is thanks to technology like modern day ventilation equipment, that people with Duchenne and other types of neuromuscular disorders can live a much longer and active life – even into their 50’s.

DMD Pathfinders believes that no life should be cut short because of power failure to life support equipment like ventilators.

Seemingly preventable deaths like these are troubling. We conducted a survey with 100 members of our DMD Pathfinders Facebook group and found that, worryingly 45% of respondents had no access to power back up for their ventilators in the event of a mains power cut.

Support from DMD Pathfinders

Whilst we can’t comment on individual cases where this has lead to loss of life, the importance of a robust power failure safety plan is essential for people using ventilation – it could save your life.

We would like to share information from people who use them, about planning for power failure.

  • Facebook members have together offered their power failure plans and we have compiled these in a useful Factsheet about managing power failure which will be published this week.
  • Our facebook group offers the voice of lived experience – talk to adults with DMD and similar and find out how they manage these situations.
  • Become a powerful self-advocate – take action and insist that your ventilator provider gives you appropriate battery back-up – many hospitals do not provided back up batteries routinely if you are not almost totally dependent on your ventilator.
  • If you live in a care/nursing home or supported accommodation – ensure you are confident that they have suitable generators, manual resuscitation bag/masks or emergency plans to ensure prompt support with varying levels of fail safes.

Our organisation is also producing a ‘Rough Guide to Respiratory Care’ which came about after Trustees attended an international respiratory meeting in London. The guide will address common questions and concerns on respiratory and ventilation issues with valuable information from leading experts in the field.

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