My father-in-law has oxygen difficulties and the hospital has put him on long term oxygen care where he will have to be on oxygen for 16 hours a day. They have not given him any form of portable devices so he is basically now bedbound even though he can be fairly active. The hospital are installing the machine in the bedroom which doesn't take oxygen canisters and expect him to start using it tomorrow.
The hospital said that they might talk about portable devices at a near date but it feels like he's just been given a life sentence as he can now no longer leave the house.
Is the hospital right in suddenly doing this and only giving him 24 hours notice and also not discussing any portable options? Is it possible to buy anything privately?
It's put my parents-in-law in a terrible mess and I'm not that impressed with the hospital's approach.
Thanks,
Phil
Written by
philnotts
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Hi Phil, If your father-in-law can be fairly active, then that ought to be encouraged. We are told to be as fit and active as possible to slow down the progression of the disease. I can't remember the sequence of events when I first went on oxygen (I was still a bit spaced out at the time, after weeks in hospital) but I'm sure portable cylinders were forthcoming fairly soon so I could get out and about. I then bought myself a portable concentrator, which anyone can still do. However, don't rush off and buy one as the NHS in its wisdom has now realised that portable concentrators Are a Good Thing and will supply them.
It may be dependent on how many litres of O2 your f-i-l needs and you'll need to get in touch with his respiratory nurse or consultant to prescribe a portable.
It is ridiculous that all this hasn't already been discussed. Why not call the BLF Helpline tomorrow (03000 030 555) and ask them to talk you through the process of getting ambulatory oxygen for your father-in-law?
Allow a few days for your father in law to become accustomed to his new regime.
In the meantime speak to the hospitals respitory team and ask for a Ambulitory oxygen therapy test, ( six minute walk test) this will determine his suitability and oxygen requirements.
Normally Ambulitory oxygen is set at a higher rate than LTOT. I’am surprised there is no instruction to increase flow rate when moving around.
There seems a lot of missed discussion, in respect of equipment and the use. You may what to discuss a piped in system, which will give freedom of movement without long tubing.
Also to consider 16 hrs still leaves 8 hrs without oxygen does his oxygen level drop when moving around? The 16 hrs can include night time.
When I was put on 24/7 in 2017 for Type II Respiratory Failure in 2017, the day I was discharged from hospital they organised for me to have 2 concentrators set up at home, one upstairs and one downstairs, I was also given 3 ambulatory bottles and a large bottle in case of emergency, if there was a power cut.
If your Father-in-Law lives in a house, he should have one concentrator downstairs and one upstairs, otherwise they are forcing him to be bed bound, which is no good for his health at all.
I’m now only on oxygen 15 hours a day 1 litre at rest, I still use ambulatory oxygen between 2 and 5 litres, because I now use BiPAP at bedtime with oxygen, which has improved my life immensely.
When I first went on to oxygen for 16 hours a day I use to go on at 4 pm in the afternoon and come off the next morning at 8 am thus getting the 16 hours I needed and leaving the rest of the day free for me to do exactly as I pleased and this worked well for me.
You need to get some advice from your local Oxygen nurses to see what they can prescribe for you
I use liquid oxygen but it would not last that long
We have started to go touring in a caravan and we bought a 2nd hand portable Oxygen machine gives out 5 litres of oxygen comes with a 30 feet cannula I was going to use when messing around the caravan but since found out my supplier would deliver to my camping site .
I also have got from my nurse a battery operated Concentrator gives me 3 hours some I’m covered .
We are going to advertise the oxygen machine now on eBay hoping it helps someone out I’m always rushing into things buying things when I should have asked in the first place
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