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BarbaraD

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Facebook..
Jun 9^th, 2015 at 8:56am

There are several groups on Facebook that are discussing clusters and most of the people on them are shooting in the wind.

they're bringing up stuff that "we" did years ago ... and there are so many of them.

some of us on this board are telling them to come here and get some facts, but I don't know how many are doing that.

It pains me to see so many suffering and not able to get any help at all except from others who are suffering and listening to quacks (like most of us did back in the day).

So I'm asking those of you who go to Facebook to try to get some of these people over here so they can get some help.. and some of them really need it. Kiss

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Callico

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Re: Facebook..
Reply #1 - Jun 10^th, 2015 at 1:40pm

I've been doing that on a regular basis, Barbara. We have been inundated with newbies of late, and so many of them have had no help at all from their doctors. On the other hand, there are a few knowledgeable people over there who work hard to get the word out, trying to keep the uninformed from continuing in pain and continuing to spread misinformation.

Jerry

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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: Facebook.. Reply #2 - Jun 11^th, 2015 at 7:05am Jerry, I guess it just hurts to see so much BAD info going out there. Even the O2 info ... some of those people don't have a clue how to use it and the advice they're getting.. Oh well... I'm doing all I can do.. and I see that you are. Guess that's all we can do for now..
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Callico

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Re: Facebook..
Reply #3 - Jun 13^th, 2015 at 7:52pm

It's the same as it was over here much of the time, too. We just have to stay active in putting out the good word. It does get rather tiresome at times, I'll agree, especially when you have to go up against the English system. I had to pull myself off of the OUCH-UK page on FB because I kept giving advice based on what we can do here in the States, only to find they don't have that kind of freedom. I really feel for UK clusterheads! Quite a few of them get on other pages trying to find ways to work around the system, but to get O2 is very difficult over there, and they have built in regulators on the tanks, so 15 lpm is the max they can get. Thank God for freedom! (Not that we are going to keep it long, the way things are looking.)

Jerry

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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: Facebook.. Reply #4 - Jun 14^th, 2015 at 10:56am Well, we can all become welders.. and that does work.. But some of it sounds like here about 15 years ago.. no clue ... and grabbing at straws..
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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Facebook.. Reply #5 - Jun 14^th, 2015 at 2:53pm Not to mention, Barb...there is one FB group who won't allow anyone to come to this site and deletes all mention of what we all know to be helpful. Really sad.
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maz

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Re: Facebook..
Reply #6 - Jun 14^th, 2015 at 5:41pm

Jerry, While you are right about the built in regulators only going up to 15 lts per minute, the 02 is not at all difficult to get. My doctor simply had to fill in a "home oxygen order form", shortened to HOOF (in case any one needs to know) and he sent it of to the home respiratory care people and they deliver 4 tanks to me regularly. It's next day delivery if I need it - every day if necessary.I just have to phone and order it the day before I want it, but they also do an emergency delivery if needed. If I want to travel anywhere within the UK, they will deliver to any address if I give 4 weeks notice. The delivery man carries the tanks up to my bedroom for me and sets them up so all I have to do is turn the dial, and he takes the empties away. He even phones me to let me know what time he's coming.

I have an assessment once every 6 months just to make sure I'm not warming it up with a blow torch and once a year they ask me to evaluate their service. I can honestly say it's the best service I have ever received from any organization.

What is vital though is a doctor willing to prescribe it. I have heard so many people say their doctor says they can't have it because it's a fire hazard, not proven to work etc etc. But a good neuro will tell the GP to prescribe it.

I belong to a large group practice of doctors and it's all very impersonal, like a production line, but there are 2 who are great since I educated them. It's almost impossible to see the doctor you want, but on friday I had a full blown attack right there in reception. They had to take me away into a little room to take my injection, and I insisted on seeing one of them. I think I scared them half to death because she came right out to see me there and then, and I got an appointment to see the other one on wednesday.

Linda, I'm not on facebook but we have an NHS site here in the UK with a section dedicated to clusters. You wouldn't believe some of the crap I have read on there. Several times I've responded to posts and directed people over here, but all my posts were pulled without explanation. Just disappeared. As you say - sad.
Maz.

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« Last Edit: Jun 14^th, 2015 at 5:45pm by maz »

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Facebook.. Reply #7 - Jun 14^th, 2015 at 6:15pm Hi Maz, Direct them too OUCH (UK) for help and support. Hoppy
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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: Facebook.. Reply #8 - Jun 15^th, 2015 at 2:04pm Yeah, Linda, I know.. it's really sad.. when help is available and some "experts" want to be the all knowing and are just kicking up dirt that we kicked up years ago.. But what is we always say -- you just can't fix stupid.. all we can do is keep trying to help..
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Callico

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Re: Facebook..
Reply #9 - Jun 16^th, 2015 at 2:53pm

Maz,

We are in full agreement, except that O2 is easy to get in the UK. It is SUPPOSED to be easy, and the NICE directives specify O2 before sumitriptan. The problem is doctors who don't know, don't care, and won't be bothered to fill out the HOOF form. You have no idea how many I have tried to help get it in the last three or four years. They will be refused because someone smokes, or because their oxygen saturation is fine, or because O2 is dangerous to breathe. (??? This is from a DOCTOR?) Then, too, a lot of it is because of the way your system works (and I'm not bashing, just glad I have more freedom) and the way you don't have the same doctor every time, there appears to be a marked lack of care about the patient. Instead, as you said, you are treated as part of an assembly line, and if the doctor has to do anything to educate himself he can't be bothered, OR if it might affect the bottom line of his budget he will reject it out of hand.

I direct people to OUCH-UK on a regular basis for help with getting the HOOF form filled out, but sometimes it seems like an uphill climb all of the time. I struggle with the UK system, too, in that no one can think outside the box without getting themselves in hack. I had to take myself off of the OUCH-UK board because every solution I could recommend would get them in trouble with the health authorities and they could lose their status. smh

Jerry

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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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maz

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Re: Facebook..
Reply #10 - Jun 16^th, 2015 at 4:29pm

Hi Jerry
I guess I'm very lucky with the 02 situation. I have 2 doctors on board now, but I did have to explain to both of them that 02 is a vasoconstrictor etc etc. They both seemed amazed, and asked me how I knew. I told them I asked the experts. Grin

One thing I have learned to do when wanting to see a particular doctor - I writhe in pain, cry a lot, screech and yell, fumble with my injections and generally kick up a fuss in their public areas. They can't get to me fast enough.

Thanks for trying to help our UK family - God knows someone needs to. But that said, although our NHS is FAR from perfect, it is free, so I guess there are pro's and con's. In a million years I would never be able to pay for all I have.

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