Message Boards for the CF Trust

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oxywalk

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

Home Oxygen Service Problems
Posted: 17-Nov-2006 23:31

Reply

I know from speaking to various people that there are still quite a number of people suffering poor service with the new Home Oxygen Service. I am doing a campaign with the help of some other patients and we are close to getting some real exposure. I need to know how people are getting along and also some real stories. Are your portable cylinders too heavy? What other issues. Unless we get together people will continue to suffer. please look at oxywalk web site at oxywalk.org and let me have your story. Best wishes to all.
Kathy.

Sweetpea

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

Re: Home Oxygen Service Problems
Posted: 18-Nov-2006 00:07

Reply

Hi Kathy,

I have been on oxygen for over 2 years now. I use the portable bottles when going out; I have just been changed over to DD bottles. This is been a real pain as I am on 3 litres; the DD only sit at 2 or 4. When I had the CD bottles I could put it at 3. So the bottles are not lasting very long at all; 1 1/2 hours usually. I was only getting 6 bottles a week and they have generously put it up to 12 for me! But I have a real problem, as you mention, about the weight of them and having to carry them. Which is silly, as I am puffed out in the first place without having to carry one of them stupid things!

Shelbert

Posts: 70
From: Ayrshire
Registered: 08-Nov-2006

Re: Home Oxygen Service Problems
Posted: 18-Nov-2006 09:16

Reply

I know what you mean about the weight.

Its a real struggle to cart those around (DD), i do have a black back pack to carry it about but find if i put it on my back the next day i feel as if i've been to the gym the day before as my shoulders are kiling me and i have knots - defeats the purpose if you ask me.

And people have said why doesn't your mum carry it about for you but why should she? the whole point of these things is to be independant, i don't want to rely on other people to do things for me and if my mum wasn't with me who would carry it?

Another point is maybe its just me but i don't feel any oxygen coming out of the DD, even at 4L especially when i'm walking, i could prolly blow faster myself (not great considering i have 13% lung function) so i don't feel it does me much good, i have recently signed up for shopmobility and feel its a godsend if i'm on my own.

Not sure if this helps.

Shelbert

Lisa90210

Posts: 43
From: Surrey
Registered: 02-May-2004

Re: Home Oxygen Service Problems
Posted: 18-Nov-2006 16:53

Reply

Just thought I would bring this back to the top of the page to give more people time to give their comments. I have been helping Kathy with her campaign and the more stories we can gather together the better the chances we have of getting some improvement to the service.

Thanks

Lisa

Angel

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

Re: Home Oxygen Service Problems
Posted: 18-Nov-2006 18:01

Reply

I have lists of complaints as long as your arm

I actually have a long letter which I wrote at one point on file, I can email you a copy if you mail me at tinypoppet@hotmail.com

Thanks for fighing this, it really was such a terrible changeover nationwide.

robynt

Posts: 22
From: brighton
Registered: 16-Nov-2006

Re: Home Oxygen Service Problems
Posted: 19-Nov-2006 11:08

Reply

yeah, well done, i basically struggle without o2 the majority of the time when walking cos when im out i cant carry the bottles, and i dont want to be tied to someone else the whole time. they said i could only have liquid o2 if i am on it for more than 8hrs a day, and i dont need it when sitting so it doesnt apply. in the summer when i was using it all the time they left me without portable cylinders and/or with faulty equiptment numerous times, once i specifically told them, with 2 days notice, i needed it for the journey to hospital and they bought it round four hrs later than they said they would.

oxywalk

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

Re: Home Oxygen Service Problems
Posted: 19-Nov-2006 23:07

Reply

Thanks to all for the responses. Very much appreciated. Please let us know when responding whether we could quote these responses on our website. It would be helpful to highlight the issues as seriously affecting people's health. The Lightweight Cylinder experience shows how many people are not getting out and therefore suffering as a result. This is unacceptable. And we need to fight for a better service everywhere. Have you asked for a conserver for your cylinders as they give more time when out. They can triple the time a cylinder can be used. Everyone is entitled to a conserver. Please contact the Chief Pharmacist of your local PCT and complain when problems occur.
Kathy

Shelbert

Posts: 70
From: Ayrshire
Registered: 08-Nov-2006

Re: Home Oxygen Service Problems
Posted: 19-Nov-2006 23:12

Reply

Yeah you can quote them.

I hope it helps as i would really appreciate the changes.

Thanks

Shelbert

oxywalk

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

Re: Home Oxygen Service Problems
Posted: 19-Nov-2006 23:23

Reply

Many thanks, We just want to be sure it is OK.
Kathy

oxywalk

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

Re: Home Oxygen Service Problems
Posted: 20-Nov-2006 00:45

Reply

You are now on the quotes page. We have also added another patients experience and altered another.
Kathy

robynt

Posts: 22
From: brighton
Registered: 16-Nov-2006

Re: Home Oxygen Service Problems
Posted: 20-Nov-2006 12:03

Reply

feel free to quote me. i have a conserver, just not very helpful with regards to the weight, plus the tubing blows off!

Cloud

Posts: 12
Registered: 10-Nov-2006

Re: Home Oxygen Service Problems
Posted: 20-Nov-2006 12:40

Reply

http://www.bbc.co.uk/consumer/tv_and_radio/watchdog/contact_index.shtml

this might be worth a go?
x

Cloud

Posts: 12
Registered: 10-Nov-2006

Re: Home Oxygen Service Problems
Posted: 20-Nov-2006 12:40

Reply

http://www.bbc.co.uk/consumer/tv_and_radio/watchdog/contact_index.shtml

this might be worth a go?
x

oxywalk

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

Re: Home Oxygen Service Problems
Posted: 20-Nov-2006 15:56

Reply

Many thanks,
Watchdog have been in touch with us and 4 people who have contacted us have been put in touch with Watchdog. Many thanks for your interest. Please let us have your stories.
Kathy

oxywalk

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

Re: Home Oxygen Service Problems
Posted: 20-Nov-2006 15:56

Reply

Thanks,
we will put your quote on tonight
Kathy