Hello. I asked my doctor for oxygen therapy.
Unfortunately, the PCT* won't allow it to be prescribed (even through a neurologist) because they say its effectiveness has not been verified by the NHS. I pointed out that the NHS website recommends it.
Right Hand, my I introduce you to Left Hand?
They still won't allow its prescription.
I'm ordering it privately from Baywater. Unfortunately, that's taken up half my pension so I guess it's diet time!
*Just found out that they're not called PCTs anymore, but CCGs.
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Submitted by DavidH 7 on Mon, 15/03/2021 - 13:49
PermalinkThat sounds wrong/hideous!
That sounds wrong/hideous!
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Submitted by Bas on Tue, 16/03/2021 - 12:23
PermalinkHas anyone else had this
Has anyone else had this problem? And does anyone have any tips about how to persuade a CCG to accept and provide the treatment?
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Submitted by DavidH 7 on Tue, 16/03/2021 - 21:31
PermalinkDo you mind saying where you
Do you mind saying where you are? I wonder if there is a precedent for this?
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Submitted by Bas on Wed, 17/03/2021 - 10:28
PermalinkHello David,
Hello David,
The Fylde, in Lancashire. I'll fight their decision. They want me to use verapamil despite my history of heart problems. I guess that heart surgery is far cheaper than oxygen...
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Submitted by John S on Wed, 17/03/2021 - 12:44
In reply to Hello David, by Bas
PermalinkHello Bas,
Hello Bas,
i am sorry to hear the difficulties you are having in obtaining Oxygen. As you may be aware it is the recommend abortive treatment for Cluster Headaches and is set out in the NICE manual which is effectively the bible for the medical profession.
https://www.nice.org.uk/guidance/cg150/chapter/Key-priorities-for-imple…
i would approach your practice manager and advise you are being denied the recommended treatment specified in the NICE manual and it is treatment you so desperately need. If you still get refused make sure you get the response in writing , you will then be able to pursue with the CCT.
I would suggest someone may not be giving the correct facts somewhere along the chain.
Good luck
john
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Submitted by DavidH 7 on Wed, 17/03/2021 - 17:55
Permalink"I would suggest someone may
"I would suggest someone may not be giving the correct facts somewhere along the chain."
Yes. My thought, too.
I also wonder if anyone (on here) nearby you has been successful in accessing Oxygen?
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Submitted by DavidH 7 on Thu, 18/03/2021 - 14:27
PermalinkBy the way, Googling finds
By the way, Googling finds this:
https://www.lancsmmg.nhs.uk/media/1412/lscmmg-minutes-09012020.pdf
... and oxygen use for Cluster Headaches was on the agenda for the February meeting.
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Submitted by Bas on Thu, 18/03/2021 - 16:45
In reply to Hello Bas, by John S
PermalinkThank you very much, John. I
Thank you very much, David and John. I won't let it rest... as the CH won't let me rest, either!
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Submitted by Dargs on Sun, 21/03/2021 - 20:57
PermalinkHi. I'm new hear.
Hi. I'm new hear.
Was first diagnosed with CCH back in 2004.
Been thru various medications lastly being sodium valporate until I reached the maximum dose and just over of 1800mg per day.
After a referral back to Neuro in Bristol I an now on Verapamil at 640mg a day. I'm have been able to receive oxygen therapy after my neurologist prescribed it for me along with the daily Verapamil.
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Submitted by Bas on Thu, 25/03/2021 - 10:20
In reply to Hi. I'm new hear. by Dargs
PermalinkI hope things go well for you
I hope things go well for you, Dargs. :)