The oxygen coordinator at RB wrote a HOOF for an iGo portable concentrator for me in the middle of July. I am still waiting to recieve it. Air Liquide took over as supplier for this area in the summer - the service and communication is very poor in comparison with Air Products. When I hadn't heard from AL for some weeks after I knew they had received the HOOF, I called them. They admitted they had a request for lighter weight oxy cannisters but at first denied knowledge of a request for the iGo. When I insisted they look at the paper version they put me through to the HOOF team who agreed they had had the request on 17th July. However they said I was on a waiting list - they had been let down by their supplier. They agreed that they should have contacted me to let me know the situation.
I still do not have an iGo - contacted them again yesterday - they are still in dispute with the suppliers. I gather that they need these machines in at least three areas - sounds like they got the contract by putting in a low bid and are now having a problem in meeting the requirements. How far am I down the list I asked? In this region evidently the first person on list is from 12th July - I am not far down -17th July. Problem is there is no end in sight to the dispute. Is there anything more I can do than wait?
I have booked for my family to go to Centre Parc towards the end of October and need the portable for then. I know I can get one delivered but as my family live a couple of hours away from us I also want to be able to visit them overnight when I am feeling up to it - not when I have to make arrangements in advance. We have had to cancel the last two holidays because I have been ill at the last moment (Centre Parcs is an act of faith!).
For me the issue is that my health is deteriorating all the time, as is my ability to get about. I want to make memories with my grandchildren - I don't have time to wait forever!!
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maggie44
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Honestly what can you do? They brought me an igo to try for work but would have found it difficult getting in and out of the car due to it's weight. Tell them you will hire one and they can foot the bill see what they say as you'll be looking at £200 a week ha ha Val
As the iGo is for night time use ( have 300 cannisters for ambulatory purposes) it would be great for me to stay away- evidently quieter also for use in a family house.
Sorry to inform you but Air Liquide are a disaster, i have had a concentrator since i was diagnosed with Bronchieactasis 18 months ago, i had a reading done in April 2011 and since then i have not had a 3 monthly reading as i should have. after the april reading the man who does the readings here (i live in N. Ireland) next called in September!! 2011 explaining he had been on holiday in July, come back and forgot about me ha ha - he actually laughed, i meanwhile had paid my bill for July and another bill was due within 3 weeks, but my reader would not be back to me until December, when i would be due another bill. anyhow the situation now is, i am permantley 3 months behind with refunds for my bills, i was due a reading in August, no one turned up, despite my phoning them 4 times and told the reader would be with me that week - am still waiting!! Again i phoned and the reader phoned me to tell me that, in future he would be calling to do readings 6 monthly, to bring n. ireland up to date with England, who he explained now had their readings done every 6 months and still got their rebates every 3 months, the months he didnt call to do a reading, customers are sent an estimated refund, so when an actual reading is done, any underpayment is paid, or any overpayment is deducted - i asked for a letter confirming this arrangement, despite 2 phone calls and a letter requesting this, i still have not received the letter i asked for.
But what really, really angers me is, the man who does my readings, lives approx. 2 miles from me, i have been taken by a good friend of mine who knows this man well and shown where he lives, not only that, but for this man to go into our largest town to take in his completed forms each week, he has to actually pass my house!! at the moment i have a bill for over £300(I had 2 exacerbations one after the other and used o2 almost 24 hours daily as i was so ill and my sats dropped continuously if i moved around too much) that i received at the end of June and still not had a refund for and my next bill is due around next week, Air Liquide informed me during the phone call telling me my readings would be every 6 months now, to bring me in line with england that i would be receiving a refund for my electric bill i received at the end june beginning of july for approx. £180 - when i said i had a bill for over £300 he again laughed and said, oh well, look at it this way you will get a bigger refund next time, I think this is outrageous, i am fortunate i can pay these bills, but what if i couldnt, what would i do, I wrote to the head office in England about the situation and it was clear that they had been on to the office here, as when i had my last reading done, the attitude of the reader was brusque and quite rude, he stormed into my house, took the concentrator to pieces, something i had never seen him do before , sat on the bed (i keep my concentrator in guest bedroom as it is next to mine and makes it easier for me to use) so my guest bedroom, which is newly decorated, newly furnished and carpeted and cost me a fair amount of money was treated as tho it was an old junk room, as stated the reader sat on the bed, which had an expensive duvet set on it, he then took out a large 'polo' shaped filter that was covered in a filthy soot covered residue and dumped on my new carpet, bits and pieces of the concentrator were just thrown on the bed, then when he finished he wiped his sooty hands on a roll of blue tissue paper he brought with him and dropped on the floor and left there. He then got up and said, rather haughitly, well i was due in May, so u cant complain this time and say i didnt call in may when i should have, it was 31st May when he called, he was actually due on 17th. But i said nothing, i was outraged about the way he had treated my home, i told him that it had cost me a lot of money to make my home look decent and nice, oh he said, a bit of soap and water will have it sparkling like new again.l I hate this company so much, that i am going to see my GP next week and ask, to be allowed to use the large cannister of o2 i had to use before i got the concentrator, at least these were free, my chemist, is wonderful and has offered to deliver them to my house, since its only 500 yards from where i live, and has told me that any time i run low to phone and he will bring me a cylinder, any time day or late evening and i can get a script for it when its suitable for me, as he knows and trusts me. sorry this has been a long post but i think anyone using air liquide in england, should all form a petition and send copies of it to their, gp's. local mps and local health authority as i think it is scandalous they way this company treat seriously ill people, i would not treat a poor animal the way this company treats patients it is supposed to help. thank you to anyone who has taken the time to read this, i so much appreciate it, kind regards Janie xxxx
Why do companies such as this make such a mess out of performing routine tasks that are at the core of their business? I think in order to get the contract they put in very low bids and then cannot afford to run the service properly for that price. Unfortunately the public sector often seems to accept the lowest bids regardless of the quality of the service the company will provide - how many useless IT contracts for the Civil Service and NHS have we seen never reach fruition because the firms just couldn't do the job when it came down to it?
One of the people I spoke to about the iGo said the company had taken over three areas in recent months and there were probably hundreds of people on waiting lists between them. Doesn't fill me with confidence.
Lovely young chap came to service my current concentrator on Wednesday - he arrived about 10 minutes after we had got home (been out to lunch). No one had informed us he was coming - could easily have had a wasted journey! I'm starting to think I should apply to manage the place - even in my current state of health I think I could do a better job than whoever is in charge!!
Hi Maggie44 I have just read your post and the last part about making memories really pulled at my heart. It is so true when you are in this unwanted position of suffering from a lung disease that doesn't get any better - you just want to make the most of today which is made difficult by the likes of these third party providers. I have suffered at the hands of air Liquide and wrote to my MP. it has all gone a bit quite but your story has made me want to re-address the issues. I do hope you manage to get things sorted quickly. xxx
Thank you very much Gilliam for this reply. Already there are things I cannot do - my 7 year old grandson has just been taken into a football academy and heard on Wednesday that he is playing a match against another academy boys team tomorrow. He was so excited when he told me this evening ( although my son had already told me yesterday). After congratulating him I said it would have been lovely to see him play. 'Why can't you come nanna?' It is quite a long way - don't feel up to driving up there and trying to find the ground etc. at such short notice. However with a portable concentrator I could have gone down to their house and gone with family up to the match and stayed over. Oh well hopefully there will be other times.
Maggie only just saw your post today, sorry didnt see it sooner.
But u can get small portable cylinders of oxygen on prescription, from your doctor, you take the script to any chemist that supplies these small tanks of o2 and they usually provide you with a special bag that you can carry them in. I usually get 2 a week, they last about 3 hours if you use them at 2Lwhich i do - obviously if u use a higher amount i.e. 5L they will only last about one and half hours. But you should be able to get as many as you feel u will need in a week - perhaps you could discuss this with your doctor as i know for definite you can get these cylinders as like i said i get 2 per week. i just take the empty cylinders back to the chemist when collecting new ones.
Oh my daughter has bought me a shopping trolley, so i put my cylinder in its bag in one of those and its great as it saves carrying it, although if u are fit and strong u can carry the cylinder in its bag on your back as a backpack. Also when i go shopping, i just bung the cylinder in my shopping trolley, and do my shopping, i have to wear a cannula in my nose, people do look and stare, but i just smile and say hi and they usually just smile back and walk on. I have to admit i was embarrassed at first using the cylinder, but soon realised, it beats sitting in the house, looking a 4 walls, good luck and hope you manage to get sorted with portable cylinders soon, kind regards Janie xxxx
Yes I already have 300 cylinders for ambulaory use (6lpm)( have downsized from the 400 ones as they are too heavy as I have back problem). Like you say if I go shopping to the supermarket which I can do for short visits, I put it in the trolley. As I have a blue badge I can also park relatively near the shop and hopefully near the appropriate entrance on my fairly frequent visits to hospital.
The i Go machine is for oxygen at night - I have to use it on 2lpm for at least 8 hours continuous - that's why I need a concentrator. I do have one of these at home but it is noisy and fairly large - lives in the study rather than the bedroom. When we had it in our room when the family visited us ( grandchilden slept in the study), it kept us awake all night. It is the size of a bedside cabinet and quite heavy - definitely not portable!
The iGo is to give me freedom to visit the family when I am feeling up to doing so (rather than on visits planned way ahead when I may be too unwell to go.) We have had to cancel two holidays at the last minute because I have been too unwell to travel ( last year in hospital for the exact duration of the holiday to Devon). We now think the route to achieving a break is to wait until I am feeling reasonably OK and then book and go at the last moment. In this case I cannot arrange for a concentrator to be delivered there as it has to be booked several weeks in advance.
I was put on oxygen 16hours per day in July and also need to use when I am out and about cant walk to far from the car to the shop stopping for rests frequently.
My supplier is air liquide , on the prescription was the following static oxygen concentractor for at night and when at rest , emergency cylinder , 2hour portable cylinder and a portable oxygen concentrator.
4 months later I am still waiting for igo all the excuses under the sun I am 56 and prisoner in my own home.
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