Madness! Complete and utter madness.

[harmonica]

My lung condition means that I have to have 24hr oxygen therapy at a flow rate of 3/4 Lpm. I have a machine at home that growles away all day, and portable cylinders should I venture out. Each cylinder lasts about 1hr 15mins. So a short walk followed by Sunday lunch at a fine hostelry means 3/4 cylinders being lugged about. Makes me breathless dragging that lot about. Naturally I have looked at portable devices and considered purchasing one, especially considering the fact that my family have an event coming up that means I shall be away for a long weekend. My niece is getting married, such fun!

I asked my oxygen supplier if they would supply a small portable device. No came the response. I need to talk to my consultant. She did not know talk to the nurse. "No" she said "speak with your supplier". This is where it goes mad. During the wedding festivities I shall be staying at three different addresses. The supplier said that they will send to each address a concentrator and for the days activities 48 cylinders divided between the three locations. Is it me who is mad in simply requesting a portable concentrator?

I know that I can hire the portable device but at a cost of £150 to £250 for the weekend. If I could not afford that I would miss the event of the year. But I now consider it it to be a principle of morality. If the supplier is prepared to furnish me with a ton of stuff and the NHS to agree it then are we not simply watching money go down the drain? Are we not condemning people to live a substandard life style? Maybe I am mad to even consider such a thing.

[Easybreather]

Not at all, but you probably will not get an over the shoulder version. I was told that the reason why is that they are expensive and, judging by how people look after their home concentrators, these will not be looked after properly. It is unfair for those who would look after them, but, again, it is the minority ruining it for the majority.

I wonder which oxygen supplier you are with. I know that Air Liquide will supply an iGo, which is a transportable concentrator, i.e. on wheels - delivered to and collected from your home address, which obviates the need for a HOOF. You are allowed to borrow for up to 3 weeks. Take that around with you and plug in/charge wherever you need it ... you would have to do the same with an over the shoulder model.

[Hidden]

I agree Harmonica - mad and false economy yes, and also life limiting. I bought my own.

[Hidden]

I too am on oxygen 24/7 although slightly higher flow rates, 15ml/min to walk around and 9ml/min to sleep and sit. I was prescribed a portable generator for when I was in the car and to sit and do absolutely nothing else. I was also prescribed 2 liquid nitrogen cylinders, one of which I would like to swap as I do not do very well with nasal canulas! The suppliers cannot change or give anything without a change to the prescription which is gererated by the hospital or your consultant. It may be possible to get it changed by the physios who run the pulmonary rehab as well. Think of it as asking your pharmacist to change the dosage of your medications without a doctors note. Good luck, hope this helps, they are doing what they are allowed to do.

[Ashwood]

I also need 4l oxygen 24/7. My respiratory nurse who writes my HOOF is the person I liaise with about my needs and she has been able to arrange a portable concentrator. However this will only work on pulse at this litre level and need continuous oxygen at night and this is where I have arrangements made whilst away from home. I also have a self fill for the cylinders attached to my home concentrator. I suggest you approach the person who writes your HOOF to discuss your needs.