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Back and Forth for Oxygen - Advice Please

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#1 Sat, 26/05/2018 - 16:05
Last seen: 6 years 2 weeks ago
Joined: 26/05/2018 - 15:50

Back and Forth for Oxygen - Advice Please


I have been suffering from ECH for a number of years but only recently diagnosed  

The neurologist at St.Marys has written to my GP suggesting he prescribes home oxygen

My GP says "Primary care" can not prescribe Oxygen, it needs to come from "secondary care" as its not the correct pathway

I've gone back and forth twice now and neither party are backing down

I''d be grateful for any advice (or links to any literature) which could give me a resolution

Thank you

Mon, 28/05/2018 - 17:59
Last seen: 4 years 8 months ago
Joined: 28/05/2018 - 17:35

Stick with it.
After my diagnosis (neurologist) they wrote to my doctor, and recommended oxygen.
When I visited my doctor (during my current episode of CH) the doctor suggested that they had no way of prescribing oxygen, and that it should come from the specialist.
After my wife, (Blessher!) continued to push the GP, she agreed to consult a more senior GP about oxygen.
Once the GP had looked into it, apparently it was quite straight forward.
I received a phone call the following morning, and the oxygen was delivered within 4 hours!
Please note though, the oxygen hasn't turned out to be the saviour I was hoping for. It seems to just delay a full blown episode, not cancel it out. (it can really ease one though!)
However, I would still strongly recommend it, as I am currently having 4-5 clusters a day, but by using the oxygen, I have reduced my dependency on the sumatriptan injections!!
Good luck (Errr, is that appropriate??)

Tue, 29/05/2018 - 11:10 (Reply to #2)
Last seen: 6 years 2 weeks ago
Joined: 26/05/2018 - 15:50

Hi Dave

Thanks for the reply and advice. Glad to hear you are having some relief. I'll certainly stick with it. Is there anything your wife used to make your case besides pester power - not that it isn't a powerful tool. I'm only asking becasue my GP runs the practise and he's probably the most senior and definitely the longest serving. Thanks again

Wed, 30/05/2018 - 08:41
Dorothy Trustee
Dorothy Trustee's picture
Last seen: 1 day 4 hours ago
Joined: 19/02/2014 - 10:16

Your GP can order oxygen. If you go to downloads you'll see Oxygen info and Home Oxygen Order Form (HOOF) to print out. Take printouts with you when you go.

Good luck!


Dorothy (Trustee)

Mon, 11/06/2018 - 11:46
Last seen: 1 day 6 hours ago
Joined: 26/02/2014 - 14:26

Hi Peedes,

Just to be clear, in England and Wales as Dorothy has said, your GP can order oxygen, but in Scotland it has to come from Secondary care for instance your Neuro.

Dave, I am wondering if you are getting the best out of the oxygen?  Have you got a non-rebreather mask or a Demand Valve?  Just want to ensure you are getting 100% oxygen and at the right flow!  Our rule of thumb, (but not medical advice as such as we are not Doctors and cannot diagnose or prescribe) that works for most sufferers is to go on the oxygen as soon as you feel a niggle (either at 15 litres per minute with a non-rebreather mask or use the Demand Valve). Then stay on until the pain has gone and then stay on for a further 5-10 mins to mop up the attack, this often stops it returning again an hour later!

take care,


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