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Alanwig
31st October 2011, 12:48
There was a power failure at Jeff's hospice caused by an internal electrical problem, which left him gasping without his NIV and the RN's rushing to him to get his NIV hooked up to his portable battery.

Just made me think about the need for people in a similar situation and more particulalrly those being cared for at home to review what back-up facilties you have in case of a power cut, mains box tripping or fuse burning out.

Ensure your back up battery/ies are handy and fully charged and tell others where they are.

Know how long they will last and test this out, one of Jeff's batteries had a stated life of four hours it lasted just one hour.

Look at alternative power sources I'm no expert but I do know you can get portable diesel/petrol generators.

Look at having emergency oxgen on supply (this is now the case at the Hospice).

Have an emergency plan in place to get you to hospital or nearest clinic/GP for oxygen and agree this with those involved with your care, including both carers and professionals.

There were practical problems too, the lift was knocked out at the hospice making evacuation by stretcher difficult, the power failed in the day, at night it would have been that much more demanding in the dark, so maybe a torch handy for use would be a good idea and some light reflecting strips on the vital back up equipment.

Just a few thoughts I'm sure others with more experience of MND can add to this.

Take care all.

Alan

AKA Jeff's mate

Countyboy
31st October 2011, 14:26
Hi Alan, Check out Jeff's power provider, some will bring out to you portable generators in the event of a power cut. As I understand the law on this, if you are registered disabled and inform your power company, then they must supply a means of power not only for medical equipment but also for heating. Also look to buy torches and lanterns with built in dynamo's that can re-charge by simply winding a handle. We have several in key places throughout our house.
CB.

computatec
31st October 2011, 15:35
Hi Alan;

I thought it was never apropriate to give oxygen to a patient with MND. Our lungs have to be ventilated so that oxygen is absorbed from air breathed in and carbon dioxide is removed from the lungs as they breathe out. Supplying oxygen from a bottle would not do that. Ventilators are set to deliver air at quite low pressure for MND because there is nothing wrong with our gas exchange mechanism. The problem is in the muscles that move air in and out of the lungs.

You have raised a very important issue for those of us on NIV, with winter and possible power disruptions on the way. Perhaps some of the PALS could ask their neurologist or respiratory team about this. My next appointment is 60 days away.

Clive

luce
31st October 2011, 23:44
Hi all

Yeah, it is a good thing to tell your energy provider. We had a power failure a few months ago and i now have it recorded on the system that a generator is needed also for the lift, use of lightwriter, environmental controls etc. we also found some handy little lights that can be activated by a push.

mum is getting an automatic door opener fitted shortly, i hope it wont just open the door in the event of a power cut- will need to check that out

luce

Alanwig
2nd November 2011, 04:47
Thanks for the replies,

CB, I wasn't aware of the requirements by the energy provider, wonder how many others have also learnt from reading your comment?
The hospice has a back up generator in case the mains power is cut, ironically it was testing this that caused the internal failure, Jeff has now had a full apology from the CEO.

Hi Clive, I'm assuming the cylinder is oxygen, I'll check, but presume it is there for use in an absolute emergency and as a short-term measure before being taken to the local hospital for respiratory relief

Hi Luce, it's quite startling when you start to think about what you rely on if the power goes as I said in Jeff's case it highlighted several gaps in Hospice's emergency planning, including the fact that as Jeff;s room is on the second floor any power cut would knock out the lift and make evacuation to an ambulance difficult.

Just for info Jeff's new NIV is a Philips trilogy 100 which has a back up battery with a 12 hour life, the hospice now have the battery permanently on charge and hooked up to the NIV. In the event of a power cut the battery automatically cuts in.

Regards,

Alan

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