I am just letting you know after being initially refused a poc (portable oxygen concentrator) I am now going to receive one. I have had to fight to get one, but as I was unable to manage the cylinders and couldn't have liquid oxygen because I live in a flat and no where outside for the tank to be stored, I will now get one.
I also involved my consultant although was told by respiratory team it is not his decision to make! but theirs.
Also they said they do not give them out in the north west.
I am fairly active and spend a lot of time out of my home, maybe that is why they were unable to refuse me a second time.
A successful outcome and will receive delivery next week of a poc.
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Great news . It's a pity you had to had to push so hard when there was an obvious need. I think we are all probably a little afraid of getting on the wrong side of health care professionals . Well done!
Very pleased for you, will make such a difference I used to have home fill but require 6litres now so I have liquid, getting out if able makes such a difference to your life x sometimes it feels like you are fighting for everything and on top of that your fighting everyday for your life, be strong x
I think sometimes it is about money. My new oxygen nurse knocked my ambulatory litreage down from 8Lpm to 5Lpm, she said because she'd 'never had anyone on such a high dose before'! I tried for about a week at the lower dose but couldn't get very far so I phoned her up and she told me to put it up if I needed to. I now move it between 5 and 8Lpm when out and about depending on whether I am sitting or strolling with purpose. I really wanted to be able to operate at the lower dose because my cylinder would last longer, but I was struggling. I often wish it would spontaneously right itself and I can get back to normal. Guess we all dream.
Hi Roseuk, My husband's oxygen nurse has told us we cannot get a POC on the NHS, he has an appt at the end of the month, so we will ask again, we are also in the north west.
Do you have somewhere outside that can store a large tank of liquid oxygen? they may explore this option first, as you can then fill a small flask from the large tank with oxygen, for ambulatory needs. Also you have to be out and about a lot, to be considered for poc, I am out each day for lengthy periods. Also I was unable to manage the bulky cylinders. I live in a flat so had nowhere outside to store the tank. If you think you fit the criteria then fight for it. Your MP might help or your Consultant. Good luck.
PS I am on 3 ltr pulse rate.
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