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Oxygen supply?

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#1 Tue, 28/10/2014 - 15:29
Jazzioooo
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Oxygen supply?

Hello I'm looking for help to get in contact with peeps to help me out with oxygen supplier , I've been to see my consultant today and he asked me to contact people on this website but I'm not sure where to start Sad                  

           Manda 

Moo-cow

Tue, 28/10/2014 - 18:17
duetto
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goto

https://ouchuk.org/downloads

read and download hoof pdf's

Tue, 28/10/2014 - 22:20
Jazzioooo
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Brilliant thank you for that, I'll get on it straight away, do u know if I'll just get the normal NHS charge for prescriptions for the oxygen or is it a different tariff? 

Moo-cow

Wed, 29/10/2014 - 08:40
duetto
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oxygen is free no charges, its delivered to your door and you just phone the supplier when getting short and they are replaced next day, no need to see dr again for more supplies.

 

the dr sends your forms off and takes about a week to get first delivery. [remember to ask for non rebreather masks]

Thu, 30/10/2014 - 09:55
Jazzioooo
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Hello , why non rebreather masks? What's the difference? Thank u for that info, do I have to print the form off here? 

Moo-cow

Thu, 30/10/2014 - 09:56
Jazzioooo
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Also I'm staying at a friends house, long term (ish) but everything is registered at my parents house, will they still deliver to where I am do u know? 

Moo-cow

Thu, 30/10/2014 - 12:51
Phil
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To have an effect on CH, you need 100% oxygen. If the mask allows air in, you won't be receiving the 100%, so the treatment would be useless.
Non rebreather masks have a simple one-way valve, a little rubber washer covering little holes.

You arrange where to have the equipment delivered with the O2 supplier, so your mate's address shouldn't be a problem.

Thu, 30/10/2014 - 16:52
Jazzioooo
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Thanks Phil, I've just been to the doctors for a HOOF and they said they cudnt give me one because my consultant should contact the GP, that I was not able to fill the form in myself.

i then asked to see a doctor and was told it doesn't matter if I do as they wud tell me the same thing as my consultant hasn't sent a letter . 

    I was made to feel silly in front of a waiting room full of people

Moo-cow

Fri, 31/10/2014 - 07:48
Mike
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Not correct, your GP can let fill in a Hoof form for Oxygen. Specialists can fill in the HOOF for ambulatory O2. I would print the form of we have on the website and give it to your GP. I would suggest that the reason they are saying they wont do it is because they dont know how to fill it in. 1000's of GP have already done so.

 
 
 
Chairman OUCH UK

Fri, 31/10/2014 - 09:01
duetto
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jazz......... if your oxygen supplier is dolby you will need two order two masks as they only come with one washer each, and the masks need two, sounds very daft but i have to peel off one and put it on the other mask to cover both holes.

Fri, 31/10/2014 - 09:26
Jazzioooo
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I went to gp yesterday for a hoof form, receptionists laughed at me and said I cudnt prescribe myself! Told them I have been told by my consultant to get this form albeit from the OUCH website but thought it wud be easier from docs as I don't have a printer.

they said because my consultant hasn't sent a letter that they advise me to have oxygen then I can't have it, this is causing me lots of stress( a trigger for CH) and now stuck about what to do

Moo-cow

Fri, 31/10/2014 - 09:26
Jazzioooo
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Sorry mike, only just seen ur reply x

Moo-cow

Fri, 31/10/2014 - 10:33
Jazzioooo
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I've just spoken to neurologists secretary ( who reacted like I was being a pain) and she says I have to wait a week for the letter to be sent to my GP to prove my consultant said about the oxygen! Wish they would all sing off the same hym sheet

Moo-cow

Fri, 31/10/2014 - 13:23
Phil
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...Now could we all turn to hymn number 4.7.4.3 ...

Tue, 04/11/2014 - 10:28 (Reply to #14)
Mike
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:bigsmile: For those who dont know, Phils remark relates to the doctors bible the BNF 4.7.4.3  drugs recommended by The NHS

 
 
 
Chairman OUCH UK

Tue, 04/11/2014 - 10:57
Phil
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I prefer the obscurity. Wink

4.7.4.3 Cluster headache and the trigeminal autonomic cephalalgias.

Cluster headache rarely responds to standard analgesics. Sumatriptan given by subcutaneous injection is the drug of choice for the treatment of cluster headache. If an injection is unsuitable, sumatriptan nasal spray or zolmitriptan nasal spray [both unlicensed use] may be used. Alternatively, 100% oxygen at a rate of 10–15 litres/minute for 10–20 minutes is useful in aborting an attack.

Tue, 04/11/2014 - 11:53
Jazzioooo
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Hello ive tried the injections etc and now in veramapil for the second time, in the middle of ECG's and blood pressure tests, I did stop them as my heart rate was running at low 50's bpm which scared me a little but obviously I'm willing to give them a go again as the pain is worth the fright of heart stopping! 

Moo-cow

Tue, 04/11/2014 - 11:56 (Reply to #17)
Jazzioooo
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Thank for clearing that up x

Moo-cow

Wed, 19/11/2014 - 11:32
Jazzioooo
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Had a phone call today to say finally my HOOF will be sent off asap as urgent, happy Manda here Smile

Moo-cow

Wed, 19/11/2014 - 11:33
ElizabethK
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Brilliant news! Smile

Wed, 19/11/2014 - 14:29
Phil
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Good news!
All you need to do now is knit a cylinder cozy.
Pity they didn't send it off as urgent two weeks ago.

You don't think the doctor actually searched for CH
on the drug map instead of migraine??
That'd be a first.

Sun, 23/11/2014 - 18:23
Jazzioooo
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Knit a cylinder cosy? Is that just to jazz it up? Lol 

Moo-cow

Mon, 24/11/2014 - 16:08
Phil
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Yes. I don't think anyone has customised their cylinders.
Phones are less unsightly, but there's cases for them.

A teddy-bear cover would make it cuddlier. Can't imagine
it affecting safety or operation.

Wed, 26/11/2014 - 10:12
Jazzioooo
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I'll look into that, hopefully will have it by the weekend, if not on Monday :) 

Moo-cow

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