Please may I have more oxygen?

In my last post,I don't know if I made myself clear,not only fighting to breathe but fighting for the right to breathe...can they ration you like this? Dictate how often you can get out of the house,it's not as though I'm even having a social life,I just go out for groceries,and maybe once every 2 months meet up with friends for coffee,I was hoping to be able to see my mum more but haven't been able to visit since this all started, I have to admit I feel like I'm in a bad place at the moment,just feeling so helpless.

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  • The company must deliver whatever is ordered on your HOOF. The only people who can change that are your respiratory team so I would suggest they are the ones you need to speak to. You can also call the BLF nurses for advice on 03000 030 555 during office hours.

  • I agree with mrsmummy you need to get in touch with your nurses , it sounds like they havnt informed your oxygen supplier of your ongoing needs....

    I know from experience there is sometimes a lack of communication when a hoof is put in place ......i have experienced a few problems but its been sorted out

    Ring your respiratory team as soon as you can and explain whats going on

  • Hi

    There is no restriction on the supply of oxygen. But there is no guarantee that the current equipment available will suit your needs.

    One thing I fail to understand is why you don't have a continuous HOOF

    Home oxygen order form in place.

    Mine was first set up by pulmonary rehablitation nurse, then transferred to oxygen team at local hospital, where I go for my annual check up.

    If it is only temporary to see if suitable, then you need to be on phone sharing your concerns, and looking at alternative equipment.

    BOC do a transportable unit.

    bochomeoxygen.co.uk/en/pati...

    Which looks like it may suit you better.

  • Do you have a link for this new restriction Stone? I hadn't heard of that.

  • Hi should read no restriction.

  • Ok, thank goodness for that :)

  • Agree - speak to your respiratory team about getting correct amount of O2 for your needs. The thing to emphasise is that if you are housebound, then you can't get your usual amount of exercise and that in itself is a threat to your health, with the possibility of needing more treatment and costing the NHS more in the end than the amount of just giving your a bit of extra O2. Not to mention if you get depressed if you can't get out.

    Lay it on thick, tell the respiratory team nurse you speak to that you are depressed already, don't hold back. They have a duty of care to you to provide what you need to maintain a reasonable quality of life and anyway its a false economy in the longer term to keep you short.

  • Yes you will need to be reassessed by the Pulmonary team at the hospital for them to arrange more oxygen to be delivered. You can let them know you intend to go out more often and therefore will need to use more oxygen.

    I went from having two cylinders for going out to four to now eight, also two large canisters of liquid oxygen and a portable Concentrator. I was reassessed each time for the increase I also started of on 4litres per minute to now 6 LPM.

    Hope you get an appointment quickly.

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