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Being rejected twice for portable home oxygen

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#1 Wed, 09/09/2020 - 03:05
Timenuke
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Last seen: 2 weeks 3 days ago
Joined: 09/09/2020 - 02:36

Being rejected twice for portable home oxygen

Good morning all.
I currently suffer from episodic which is think is now more chronic cluster headache. When I first diagnosed with cluster headache it was episodic from May to October. But haven't had remission period since start of 2019 and now been constantly getting these attacks up to 3 times a day, with days of shadows. I'm taking verpamill 380mg per day as however my neurologist isn't keen on having me on high dosage which seems to be a problem... Due to age (22) he feels less inclined to give me anything more serious with side effects which was challenge just to get increase with dosage for verpamill. But as havingtthis rare condition I expect to be easier to get the treatment but I was wrong had the worse problem was my previous GP practice as they useless at doing anything. They only prescribed four sumatriptan injection per month due to cost of per injection and just refused to prescribe verapamil as they wouldn't have no funds left for other patients. In which forced me to leave my gp and reported them as well. I've changed to new gp so far no problem, they given me ample of medication and regular check ups. But unfortunately I been fighting with them and air liquide for portable home oxygen. I been told by air liquide and various GP that they cannot prescribe it to me and will need to be done though my neurologist. Which is great news as he's not available until middle of September and getting a appointment for him will be possible end of October.
What I don't understand is that my Gp didn't have issue getting my static tanks in June 2019, so why have I got a issue now?

Is there any way of fast tracking for Portable home oxygen or I will have to attach the larger tanks to my back for now?. Haha!!
I have also been referred from my neurologist to The National Hospital for Neurology and Neurosurgery in London with aim to get on the gammacore. Has anyone been successful with gammacore?

Fri, 11/09/2020 - 11:21
Val
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Last seen: 3 days 20 hours ago
Joined: 21/03/2012 - 15:16

Hi Timenuke. 

Your GP is quite right that portable cylinders can only be prescribed by consultants using a Part B form, which only they can get access to.  I would suggest that you call your neuro's secretary and/or headache nurse and ask for the consultant to please prescribe the portables for you.  They can access the form online, and submit it to the oxygen company via an online portal.  Your consultant would only need to ask you the oxygen safety questions and that could be done by telephone, so maybe a telephone consultation with him or her would be easier and faster.  

On the point of insufficient injections being prescribed for you, they cannot be withheld on a cost basis.  There are two things you can do, as detailed in our document 'Cluster Headache Basics';  contact your Clinical Commissioning Group [used to be PCTs,] and ask to speak to the prescribing adviser and tell them about the injections needed for your condition being withheld on a cost basis.  Secondly,  there are details in the document which explain the NICE guidelines written for GPs for prescribing for headache conditions, and the BNF [GPs prescribing bible] which also backs up the prescribing guidelines.   

Have a good read of the document and download it and take it with you if you need to persuade a health professional to prescribe appropriately: https://ouchuk.org/basics

Good luck 

Val

 

Fri, 11/09/2020 - 11:22
Val
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Last seen: 3 days 20 hours ago
Joined: 21/03/2012 - 15:16

Just to add several sufferers have had good effect with Gammacore.  If you are going to the NHNN, then if you haven't got your oxygen sorted, they could perhaps do that for you when you visit. 

Val

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