I have been supplied with a oxygen cylinder by Air Liquide. My respiratory nurse said that you cant get anything smaller. On making further enquiries I find Air Liquide do supply these small concentrators for my ambulatory oxygen needs. I find the cylinders they have provided me with, are heavy, awkward to manage and I feel very embarrassed when seen out with this huge (to me I am 5ft tall). I know I would get out every day with a smaller oxygen unit. I am aged 65 on pension credit and cannot afford to rent or buy one. My respiratory nurse has not been helpful on this matter.
How do I get a small portable oxygen ... - Lung Conditions C...
How do I get a small portable oxygen concentrator on NHS? I suffer with severe copd
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26 Replies
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Can I ask what your oxygen rate is (Lpm) and whether you are on continuous flow or pulsed flow? There are a number of reasons why you may not be offered a portable concentrator. I am 63 and was assessed for oxygen last Sept. I, like you, was devastated that I couldn't have a neat little portable machine for ambulatory
I am on 3 pulsed flow
If I was on 3Lpm, pulsed flow and my oxygen supplier says it could supply a portable concentrator to fit my needs I would ask my resp nurse (s/he who decides the HOOF prescription) again why I can't have one. I would say "I know AL provide the xxxxx machine which would suit my needs" and I would listen carefuly to the answer.
I'm not sure but it may be the "provider" ie AL who decides what equipment it will provide - often dependent on what they have available in stock so it may not be his/her fault.
Oxygen nurses are usually very good at assessing the patients emotional needs as well as their clinical needs. perhaps she wants to see how much use you make of ambulatory oxygen before offering a more expensive machine. Some people are on it and never use it.
I have the size 400 oxygen cylinders and have just had to 'bite the bullet' as nothing else is suitable. I find the cylinder too heavy to carry so I put it into a Rolser wheeled bag, which I bought for shopping, and pull it along behind me. It works well as I can hide all my tubes etc inside when I am sitting in a resturant and it looks good.
There is no easy answer to the feeling of embarassment. I still haven't walked up my high street, or visited local shops or walked down my own street with it. I go to shops in other towns. Not all my aquaintances know although I have now told all my close friends and family. So I am not a good example of how to deal with embarassment!
One plus I have found is that people are very helpful. I find I smile a lot and don't worry if I need to ask for help - difficult for an independent person to do at first! But I can't carry a tray with one hand so I ask. My biggest problem is when friends FUSS! I feel about 90!! But I love them.
Hi Happy Feet.I was interested to read your post on ambulatory oxy,I see you have 400 bottle i did too but found it too heavy so i changed to a 300,much better and i use 4 ltm and manage ok if i use for walking and switch off when sittng.With reguard to the small portable concentrators the prices in u,k ridiculous as usual,i feel we are being ripped off on many disabled products by unscrupulous manufacturers,suppliers and retailers.Concentrators in u.s. half the price IFF you can find one to ship to the uk.love.Bengunn.xxx
I have been on 8Lpm pulsed ambulatory and the 300 was lasting less than an hour. I have now been told (different oxygen nurse) that 8Lpm is too high and very few people are on that level! So she has cut me down to 5Lpm. If this settles I shall return to 300's. Portable concentrators are not suitable for 5Lpm.
I really relate to the thing about fussing happyfeet. I've been going out with the O2 cylinder for the first time ever the last week, following exacerbation (it may not be permanent but who knows). Anyway Ive just gone for it, and am out on our high street, and on the beach (small seaside town where everyone knows everyone) most days. I just want people to be matter of fact about it, and most of them have been and just said how nice to see me out and about again. But the very first person who saw me on my very first outing - not someone close - immediately adopted a kind of agonised expression, meant to be empathic i think and started to make a beeline, so i just called out "Hi there S--, alright?" smiled and kept walking, and she got the message. I know she meant to be nice and caring, but while i can manage embarrassment I can't cope very well with exaggerated sympathy.
People are nearly always pleased to be asked to help though. 
I know, I'm a wimp! The past year has been an emotional and physical rollercoaster - hard to think that this time last year I was looking forward to joining a gym and going abroad on holiday. Oh how quickly things can change!
You have done very well with a very positive attitude. Your experiences chime, I think thats why I have avoided local shops - it's the aquaintances, not my friends, who get me uptight. As you say, exagerated sympathy. Sadly, some friends find it difficult too. They seem to think I am 'ill' and no longer able to get out and about - kind of 'phone me when your better' attitude. I know it is difficult to understand what it is like when you haven't been through it yourself.
I shall make more of an effort to be like you are - well perhaps when its not too cold!!!
Tell 'em its laughing gas - someone at my BE group used to say that and i thought back then that i would use that when the moment came, which it has now.
Believe me i have my down moments like everyone else, but generally i appreciate a joke about it. When my partner who is carrying the cylinder at present - i can't, too heavy - gets ahead of herself and i shout out "heel!" people have fallen about laughing. Probably relieved to have a hint about how to handle it. I think it is hard for people, but we have to think of ourselves first, psychic survival an' all. 
Why hide your tubes etc you shouldnt be ashamed of having to breath o2. As far as a portable concerntrator you need to contact your supplier, they might tell you that you need a prescription from your GP but that shouldnt be a problem if you need 02. But hey folks dont be ashamed I take mine out and I dont hide anything. I am disabled so why should I feel ashamed, we must stick together.
Aint that the truth!
Thank you so much for your reply this has helped enormously. All the information you gave me will be of benefit. Thank you so much.
Hi
Air Liguide, supply a portable oxygen concentrator..
It is inogen G2 comes with a trolly and is quiet heavy. 3.5 kilos
It caters for 1/5 lpm
I declined because of the weight, living on the first floor..
I had an XPO2 when I used a Portable Concentrator and loved it. It was nowhere near as heavy as a cylinder and so easy to manage. Just plugged into an electric socket to charge up. Trouble is, although it states it went up to setting 5 (not 5 litres) it used to cut out on setting 4. At the time I was using 3litres of Ambulatory Oxygen but after being reassessed and now needing 5litres I had to go back to cylinders. Far too heavy for me so I now use Liquid Oxygen.
TELL your Nurse you want to have Portable Concentrator, but check with Air
Liquide as to exactly what type they will supply. Pass this info to your Nurse and she HAS to help you. If she continues to be unhelpful request either another Nurse or contact your Respiratory Consultant.
Good Luck.
Thérèse
• in reply to
Cheers all this information is very useful to me. Many thanks.
Hi my mum had te same problem she is tiny and couldn't carry the cylinders even the child size ones, i did buy her a trolley but even thst eas difficult for her. We changed over to liquid oxygen it comes in two sizes we went for the smaller one and it is much easier, the only problem is storing the massive container and filling it she can't manage to do it herself. It would be worth asking your oxygen nurse. Best of luck. Xx
Hi bmb64, I was interested in what you had to say . I`ve just gone onto liquid oxygen because I was finding it hard dragging my shopping trolley on and off buses with the cylinder in. I still find the larger size liq ox quite heavy but no-one seems able to tell me how long the smaller one lasts. Would appreciate your know-how. Regards, Sheila x
The smaller one last roughly 9/10 hours and is great to carry around she wears it across her body just like a handbag. Good luck! Xx
Thanks so much for that info. I went on the bus into town this afternoon with the larger liq ox across my body and I was just about ready to drop after 10 mins. My shoulder is agony so I`m definitely going to ask for the smaller one. Thanks again ! Sheila x
The time it lasts for depends on your literage and whether you are on pulsed flow (demand) or continuous use. For example the Helios Marathon (large liquid oxygen container) lasts 17-20hrs on 1Lpm pulsed but only 1hr50mins on 5Lpm
on continuous flow.
My oxygen provider gave me a book showing the various types they can provide and the hrs per litreage/flow rates of each. This info is also online.
• in reply tobmb64
What is the name of the small Liquid Oxygen cylinder you use? How much Oxygen does your Mam use? It must be a low rate if it last about 9 hours.
I use between 3 and 5 litres Ambulatory depending on what I am doing and my cylinder lasts for about two and a half hours.
Thérèse
bmb64• in reply to
My mum is on 2litres not sure on the name will check it out tomorrow.
hiya we too are with air liquide we rang them last week to ask about getting one of these portable machines & was told quite curtly that they do not supply them, then two days later we get a curtesy call from said company & asking on the off chance we were told that they do offer a inogen portable machine ,we don't know which model but anything would be better than a cylinder but them need another Hoof from the hospital before they can give us one & again unsure how long that will take, we asked out g.p for one - he's given his support with a letter to the consultant but says it up to them to complete the prescription, basically get the impression it all comes down to money rather that whats best for the patient, sorry to be cynical but thats the impression we are getting.
Yes totally agree it comes down to cost and budgets. Nurse seemed horrified I would even suggest having one due to the cost and totally was against me having one, as then they "would have to offer one to everyone", her words.
looking for portable oxygen cylinders in Mumbai India
I too am only 5ft tall, I purchased a backpack on 02 Totes, it is an American firm. It can seem quite expensive at first, but it is so much easier to carry around. I have the small 1L cylinders and have no problem apart from the cylinder sometimes sliding over a little. No one notices you carrying around a backpack much at all, so psychologically it is so much better than the bright blue packs. Although not perfect it is a solution , I have even ordered several for others who attend the same Pulmonary Rehab class as I do.Hope this is some help.
You can use an inogen one machine. It comes with a trolley to push/pull with you.
Whatever appliance you use - they are all heavy, and canbe awkward to manage. As for being embarrassed, im afraid thats something you have to learn to get over - whichever appliance you use there will always be a canula on your face - nobody is looking a t the machine.
And does it natter what others think - as long as you're getting iut and about and have a decent quality of life? Ps. Im ixygen dependent, use 5lt per min constant flow.
Ive used the bittles, inogen one and use LOX. I really dont feel embarrassed after more than a year of use its just normality for me now.
Chnage Your oxygen nurse if shes not helping you.
Regards.
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