Help! What would you do?

My lung condition meant that I had to have an oxygen supply 24-7 set at 5lpm. I fought for and eventually got a portable concentrator that would deliver the same. It gave me so much freedom. My condition has recently deteriorated and I now need 9lpm. There is a portable device that will deliver the 9lpm I require but I have been told that I cannot have it as the contract between the health authority and the supplier is set at 5lpm. So to go out I without compromising my health any further I have to carry 4 bottles of oxygen that will last for just about 1hr. A drive out and about a visit to a gallery followed by sunday lunch meant 10 bottles. Not that great. Other health authorities will supply the 9lpm machine.

I have been told of course I can self fund the better machine but why should I especially when you consider that the cost between the 5and 9 lpm machines is only £150. or I could hire it at a monthly cost of £192. I am subject to a post code situation.

I feel I am a prisoner of my condition and shackled to heavy oxygen cylinders. I desperately need my independence and freedom to enjoy what time I have left, especially with my little dear granddaughter. Who needs oxygen when you've got a little Florence?

4 Replies

oldestnewest
  • I only need 0.5ltr but a portable concentrator is nearly £2000 so to walk I have to lug an oxy bottle along hence haven't been downstairs since before Xmas. So I just shrug my shoulders and carry on.

    Good luck,

    Chris

  • Chris I think that your situation is criminal as far as the NHS is concerned. I had one hell of a fight to get my 5ltr machine but I won in the end. My GP was a fantastic aid but his hands are tied by the current contract. Why on earth should we be confined in such an evil way?

    I wish you well.

  • Options choices, you could ....

    Ask your current health authority to change the contract from 5lt to 9lpm as your health requirement has now changed.

    Move to the post code area that will provide the 9lpm needed

    Pay the £150 difference, its not much to pay for freedom, convenience and independance.

    Phone the BLF helpline for any suggestions they may have.

    Good luck

  • You could always look into the liquid oxygen option. I an on 15L per min and get about 3 hours of ambulatory oxygen with 3 Companion T1000 refillable tanks. All the best

You may also like...