Message Boards for the CF Trust

Replies: 12 Pages: 1

Oli

Posts: 201
From: Milton Keynes, England
Registered: 12-Feb-2004

O2, oh poo
Posted: 23-Nov-2006 18:26

Reply

I'm sure I'm just the latest in a long line of people to have a moany moan, but I had my first experience of dealing with Allied Respiratory and their new oxygen provision service today. Previously, back in September, my mum liased with them while I was in hospital to get a concentrator installed in my flat.

They were due to come today to give me portable cylinders, anew back up cylinder and install a line into my study from the concentrator.

Not only did they not give me a time they'd be coming (not even AM or PM), so I had to rearrange a hospital visit to accomodate the visit, but I received a phone call from the engineer at 3pm, after a whole day's waiting, to say he wasn't going to be able to make it today and that he'd try to do it tomorrow.

What kind of company has a) only one engineer working in an area that clearly needs far more and b) refuses to narrow down times even as far as AM or PM and c) thinks it sufficient to supply 2 3-hour "portable" O2 cylinders to someone on 2LPM permanently?

I'd no idea the issues with O2 provision were quite this bad, but I'm shocked at the service I've had today. The engineer even had the cheek to tell me I was "lucky" to have got the two portables as it is.

Don't you think it's scary that a person can be considered "lucky" to have their O2 needs met by an outsourced company?

http://www.oxywalk.org

Angel

Posts: 491
From: London
Registered: 17-Feb-2004

Re: O2, oh poo
Posted: 23-Nov-2006 18:28

Reply

Oli the whole thing is a disgraceful mess, and that is frankly rubbish service. I was also told I couldn't have any more than 3 portables, and when I ran out (bearing in mind I was only using them for journeying, not for actually going out) they took a week to get me more despite me pleading with them about having to go to Harefield at a moments notice!

Will speak to you in more detail when we chat, but it makes my blood boil it really does.

RogerRedHat

Posts: 565
From: Oxford
Registered: 09-Feb-2004

Re: O2, oh poo
Posted: 23-Nov-2006 18:41

Reply

I got a totally unannouced visit from one of their engineers a few weeks after they took over the service. I was still in my jammies when he arrived. It went something like this;

-I've got a concentrator for you.

-That's nice, who are you? After he explained who he was I said I only used cylinders. He then explained that they were phasing out cylinders and were encouraging people to use concentrators as they are safer and obviously last longer.

-You don't want a cylinder blowing up in your living room

-Fair enough. Once he'd shown me how it works, he then went back to his van and brought me a massive cylinder.

-Just incase there's a powercut

-Erm..fair enough, but you just said they're unsafe! What if it blows up in my living room.

-I doubt that'll happen really.

-OK, so can I just have the cylinder?

-No we're phasing out the cylinders.

-Erm..ok

Sweetpea

Posts: 83
From: Scotland
Registered: 09-Nov-2006

Re: O2, oh poo
Posted: 23-Nov-2006 23:25

Reply

Oli are you on the O2 24/7? what cylinders are you talking about - is it different in England than it is in Scotland

Sweetpea

Oli

Posts: 201
From: Milton Keynes, England
Registered: 12-Feb-2004

Re: O2, oh poo
Posted: 23-Nov-2006 23:33

Reply

Yeah, I'm now on 24/7.

I've got a half-size back-up cylinder (the big metal thingys that are about 3 feet tall), and 3 "portable" cylinders, which are each about a foot/foot and a half tall and look like miniature versions of the big ones.

I say "portable" because I'm fairly sure that if I tried to lug one around with me, I'd need another cylinder with me to get enough oxygen in to help me carry it!

When I popped out of hospital for a bit during my stay a couple of weeks ago, they gave me a little plastic-y one (a "CD") which looks like an over-grown white thermos flask and is a good deal lighter and, I would say, properly portable. I've no idea why I can't get these from Allied, as I've had them from my pharmacy before, too.

Grr.

oxywalk

Posts: 14
From: London
Registered: 17-Nov-2006

Re: O2, oh poo
Posted: 23-Nov-2006 23:42

Reply

Welcome to the world of the Home Oxygen Service. Please take a look at oxywalk.org and please let us have your story. We are building quite a bit of evidence that will soon hopefully get into the public domain. I have been on Oxygen 7 years for my Bronchiectasis. however I know CF patients who are struggling and others. The definintion of lightweight is a cylinder and conserver under 3.5 kg. In the USA they have Liquid Oxygen cylinders at 3.6 lbs. The lightest ambulatory oxygen cylinders from Air Products weigh in at 2.6 kgs. So the American adults have ones that here they say should be just for children. Join the campaign and let your testimony add to the cause.
Please take care.
Kathy

Sweetpea

Posts: 83
From: Scotland
Registered: 09-Nov-2006

Re: O2, oh poo
Posted: 24-Nov-2006 18:09

Reply

Hi Oli,

So how long do these last you? the bigger ones? I have my concentrator in the house and black back up cylinders and I get the little white DD ones for going out; same as the CD ones you described. They give me 12 of these a week. So what do you go out with then? surely you don't have to take out the big ones?

Sweetpea x

oxywalk

Posts: 14
From: London
Registered: 17-Nov-2006

Re: O2, oh poo
Posted: 24-Nov-2006 18:15

Reply

Do you have a conserver for your DD cylinders. The con server would extend the range of the DD by between 3 and 5 times depending upon the conserver. I read somewhere in my research that conservers were not available in Scotland??

Sweetpea

Posts: 83
From: Scotland
Registered: 09-Nov-2006

Re: O2, oh poo
Posted: 24-Nov-2006 23:09

Reply

Hi Kathy

I have asked around about the conserver; asked the CF Sister and the guy that services my concentrator. But was told they don't use them in Scotland. But a few months before that I seen a guy with one at the Gartnavel (Scotland). Hmmmmm strange!

oxywalk

Posts: 14
From: London
Registered: 17-Nov-2006

Re: O2, oh poo
Posted: 24-Nov-2006 23:19

Reply

This is a waste of resources in that you need more bottles. also the range and time you can be out becomes limited. You should really write to your MSP. We will put something on our site about this in scotland. It sums up the ignorance of the people who make decisions. We are way behinf the US and Europe on this.

Oli

Posts: 201
From: Milton Keynes, England
Registered: 12-Feb-2004

Re: O2, oh poo
Posted: 25-Nov-2006 15:25

Reply

Is there any kind of online visual guide to the types of cylinder you can get?

I'm getting all confused with types now, as I've been through 3 different types of portables: there's the one I know is called CD, which is the plastic-y one, there's a small, thin white one which is a little less sexy, but with permanently attached taap on it, and now I've got some REALLY little but REALLY heavy ones which you have to attach a head onto to get them to work.

I'd feel much better discussing O2 matters with people if I had a reference for all the different cylinders.

oxywalk

Posts: 14
From: London
Registered: 17-Nov-2006

Re: O2, oh poo
Posted: 26-Nov-2006 15:01

Reply

One of the next things we are going to try and do with the oxywalk website is to do a glassary and also try to show pictures of the equipment. It can be confusing. Please let us know of any issues with what you are using.

oxywalk

Posts: 14
From: London
Registered: 17-Nov-2006

Re: O2, oh poo
Posted: 26-Nov-2006 15:04

Reply

Allthough our fight is in England we sould like to know what is on offer in Scotland and anywhere else. Or what is not on offer and problems people are having. If we can raise this issue enough then hopefully a wider group within the UK may benefit. We would add something about Scotland to our web site. There is really a lot of ignorance out there amongst the decision makers and we have to let them know.
Kathy