Posted , 7 users are following.
Hi can anyone give me some advice I'm on long term oxygen at home and I've been given a cylinder for use outside but I would like to buy a small concentrator but my nurse says they're not compatible for me cos I have continuous flow oxygen but the cylinder I'm using is not continuous it's pulse dose is there anyone who uses continuous at home but pulse dose when out and what flow do you use
0 likes, 9 replies
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michael127 jackie_48708
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big_ale jackie_48708
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emmgee jackie_48708
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Sorry to repeat what we all say - everyone is different so what suits me may not suit you, not only in flow rates but also portability of the poc.
I have cylinders at home but I don't need oxygen 24/7. However, when I do need it, it's a must and right now (!) although a continuous flow between 1 and 2 lpm normally suffices.
1st experience were with hiring a Phillips as I needed to fly abroad and our UK National Health Service does not allow its cylinders to leave the country. It supports continuous as well as pulse but is more transportable than portable as it needs a trolley. It worked well but literally fell off its trolley and broke my wife's foot.
In this health area, portable oxygen cylinders and poc's are mutually exclusive with home cylinders (which I need) so buying a poc myself was the only alternative. First off I hired one with a max flow of 3 lpm for a 2 week hol by car. It worked fine (max 2 used) but the ergonomics were pitiful - the 'designers' clearly had never tried using the product !
The alternative product goes up to 4 lpm but weighs a tad more. After the suppliers allowed me to try one for free for a weekend, I took the plunge and bought one. Acid test will be when I fly abroad soon !
Hope this helps ... and as Michael says, safe flow rate is the safest. Take care.
michael127 emmgee
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michaelfhope jackie_48708
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If you are resident in the UK you are about to enter a "politcal" minefield when it comes to concentrators.
It's a bit complicated so I will just keep it short and concentrate (no pun intended!) on the essentials.
The supply of oxygen on prescription is contracted out by the NHS to commercial companies (BOC and others). They also run the assessment programmes on behalf of the NHS as to what oxygen needs the referred patient has, so it could be said that they have a vested interest in providing oxygen.
As a NHS patient you can be prescribed oxyen in cylinders and/or for portable use Liquid oxygen which is supplied from a main tank you keep at home from which you refill manually yourself portable cylinders. These are quite good but there are major drawbacks in that they vent (empty) if not used immediatly and you cannot take them on long journeys or overseas.
It is a little known fact that you CAN BE PRESCRIBED A PORTABLE CONCEnTRATOR ON THE NHS. They keep very quiet about this as the unit cost is circa £2500 - £3,000. However my own research shows that it is very cost effective as you no longer need to have oxygen delivered. They only work in "Pulse" mode (on demand) but can deliver a maximum of 4/5 litres per minute. Batteries last anything up to four hours which can be extended with back-up batteries and are approved for taking on airplanes. They also work on mains or 12 volt in a car
As I say THESE ARE AVAILABLE ON THE NHS but for some reason(guess what?) there seems to be a resistance to getting one, but if you really push it should be possible.
One of the major suppliers (won't mention their name or the moderator will block me) is ALSO the supplier to the NHS, so that is what you get as your right if you can persuade the people who make the decision to prescribe one for you.
However, my own experience has shown that it is a painful process, but if you persist you will succeed.
I would be interested to hear if anyone else has experienced this extarordinary reaction to providing a viable, cost effective and practical solution to help a chronic disability.
jackie_48708 michaelfhope
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emmgee jackie_48708
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Anyway, my suggested course of action is to try one and see !
Renting is expensive unless you live near a supplier so can collect yourself therefore, as I mentioned previously to you, how about asking for a free trial ??
emmgee jackie_48708
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Re Michael Hope's comments, the situation does vary around the country and even between towns in the same county. I recently bumped into someone from a town 30 miles away who had both portable liquid oxygen and home cyclinders + static concentrator combo. but when I asked my respiratory nurse about this she said 'not possible in this county' - if you opt for one they come to take the other away.
Same applies to poc's. Yes, the same one as I bought IS available on the NHS but the wait is months and the same rule applies - as per my original post, they are mutually exclusive with other forms of oxygen so you have to make a choice to suit your circumstances. The noise of a poc keeps my wife awake at night so it was no contest (!) And mine was dead on £2k all in.
Hereabouts it is the GP and respiratory nurse who control the oxygen prescription, NOT the oxygen company. This was confirmed only a week ago when I was delivered a cylinder with a crassly calibrated valve. The jobswoth at the oxygen company averred that it was in accordance with the prescrtion so tough, if you aren't happy, get your GP.to change the prescription.
So I'm afraid that, at least here, it's more GP budget restrictions than conspiracy theory !
sandy58386 jackie_48708
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I use a concentrator at home but also have a portable one to use if I am going to stay overnight elsewhere (the concentrator is too heavy and bulky). I told my physician that my portable is pulse operated and he said to just bump it up 1/2 ltr when I need to use the portable. Please check with your physician on this.