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Portable oxygen

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#1 Sat, 19/04/2014 - 08:14
adrianabbott26@...
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Portable oxygen

I have big cylinders and two concentrator via the doctors.

 

i am trying to get portable but get told by huge doctors that they cannot order these as I need to see a respiratory nurse as they are the only people who can order them.  It seem bonkers that the doctor cannot order them?

 

does anyone know of a respiratory clinic in the West Midlands as I am stuck and cannot leave home without oxygen.  Days out are impossible.

Adrian Abbott

Cluster Sufferer

Sat, 19/04/2014 - 09:07
Val
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Unfortunately it is the case that GPs can't prescribe the portable cylinders, it has to be a respiratory consultant! It's nuts as you say, but we are addressing this with the DOH etc, but as always it takes an age to get anywhere with them. 

Who is your oxygen supplier Adrian, there might be an answer to your problem, but I need to know who your supplier is.  And why they have given your concentrators is a mystery to me, they don't pump out enough 02 for CH sufferers! 

 

Val.

Sat, 19/04/2014 - 10:21
adrianabbott26@...
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I use air products and have concentrator producing 15 litre, but I am using tanks as oxygen is there immediately.

 

Adrian Abbott

Cluster Sufferer

Sat, 19/04/2014 - 17:09
Phil
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Adrian.
Sorry mate, concentrators are pretty useless from what I hear.
O2 needs to be 100% to have the effect needed in CH.
Might be useful for inflating balloons.
I'd ask my Doc to replace the prescription with M&M's;
just as effective and also great for kids parties.

Edit.
Only just seen Val's post,
Oops.
I'll just back out quietly hoping nobody noticed.

_________________________________________________________________________ Yeah I know, my coat's already on.

Sat, 19/04/2014 - 16:43 (Reply to #4)
Val
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Adrian

As you are already an oxygen customer with Air Products (now taken over by Baywater I think), call their customer number for ordering and try asking for a Freedom 600 cylinder with a Schrader connector.  I'm a Air Products/Baywater customer and I just asked, but I already had standard high flow portable cylinders.  However its got to be worth a try.

We'll keep everyone posted on the portable situation as and when we have news.

Val.

Sat, 19/04/2014 - 20:27
DavidH 7
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My GP requested portable oxygen for me (it seemed preferable to a large cylinder at work), using a HOOF, and I understand I can have one but the oxygen nurse advised that it would only be enough for one use.

Sat, 19/04/2014 - 23:10 (Reply to #6)
Val
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If you are using a non-rebreather mask, and have a 450 litre cylinder, you would have enough for two or three attacks if you used it at 8 litres a minute for 15 minutes, that would cover three attacks.  If you can get the portables then ask for two, so you have one on and one spare, and also with your large cylinders, ask for another so you can have one on and one spare, then you wont' run out over a bank holiday weekend. 

The size of portables varies from one company to another, BOC are 450 litres, Air products 400 or 600 (there is also a 300 but thats mainly for paediatric use] and I think Air Liquide have a 600, not sure about Dolby Vivisol.

When the prescribing arrangements changed a couple of years ago, if you are new to oxygen, you can only get a portable from a respiratory specialist, which is a damn nuisance!  Just seems so stupid to me and if you are a CH patient and want to try 02 the portable would seem to be the best option AND it keeps people in work, AND they are not restricted to staying at home in case they get an attack!  But we are working on it!

Val.

Wed, 23/04/2014 - 07:38
adrianabbott26@...
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I have phoned Air Products and been told by the service desk that they cannot order portable oxygen cylinders.

This has to be done by a respitatory nurse or consultant as they need to log onto Air products and request this themselves for the patient.

So I need to get another appointment booked to start the process of getting a portable cylinders.  Have been told by the doctors that the referal could take between 6 - 12 weeks before I see anyone.

Seems like the NHS don't know what they are doing again.  :)

Adrian Abbott

Cluster Sufferer

Wed, 23/04/2014 - 10:02
duetto
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when we lived in surrey had a few random phone calls from the respiratory nurse just checking on the o2 arrangements/ benefits etc. So someone must pass a list of o2 customers to them and they are aware of clusters.

Wed, 23/04/2014 - 15:47
John
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I had a referal last week and it only took 4 days to arrange...I guess it depends where you live, but try to contact the nurse direct and stress that it's urgent.

Wed, 23/04/2014 - 21:31
adrianabbott26@...
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Had a visit from the baywater engineer today and he told me I officially to go to the queen Elizabeth hospital in birmingham and visit the lung function team near entrance.

They might do an assessment or might need a referral from doctors.

He told me to tell them what O2 I am on and the medication - they can prescribe smaller tanks.

 

Baywater healthcare can supply schrader valve for oxygen but they only do it for paediatric and not normally for adult patients.  They also attach a regulator which only goes upto 5 litres per minute.  Tried to explain about the first click before the numbers start but he just got confused.

Will see him again soon as prescriptions for home needs changing so will get more updates in 6 weeks time - will post with more info.

Adrian Abbott

Cluster Sufferer

Wed, 23/04/2014 - 23:26
Val
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Baywater have supplied me with a 2000 litre cylinder with a Schrader connector, no bother at all.  I'll see if I can get you some help on that.

 

Val. :)

Sun, 27/04/2014 - 10:46 (Reply to #12)
Mike
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I had to go to Baywater a couple of months ago for a meeting with two of the directors. They were quite agreeable regarding the supply of schrader valves. They actually had a bigger concern wth CH sufferers using HF or UHF who had COPD.  Emphysema was a possible illness given the high preponderance of CH sufferers who smoke. There are no checks whatever on this and there is a real risk.

 
 
 
Chairman OUCH UK

Mon, 28/04/2014 - 14:57
NaomiR
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Hi Mike - I live in the same area as Adrian so I PM'd him about my experience with Baywater and the Freedom 600 cylinders (I get everything I need now), as I was unable to comment on the forum - Val has kindly put this right for me this morning. 

Can I ask you about the risks involved with HF or UHF oxygen for people with COPD? I've Googled this and can see there is potentially a number of problems - all with long names. As I have COPD this is of some concern, if not now, then possibly for the future. Do you have any idea, from a layman's point of view, what one should be aware of and be on the lookout for?

Thanks for all the time an energy you put into our support and wellbeing.

Tue, 29/04/2014 - 13:22
Mike
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Hi Naomi, yes of course. This is what I know. This is in simple English with no longs words, cos I dont understand them either.

My wife some years ago was diagnosed Emphysema and was told she would need Oxygen. I discussed this at length with a very senior member of one of the major Oxygen suppliers who I had known well and was a good friend of OUCH. He told me to try and keep my wife off of Oxygen therapy for as long as possible. He went on to say many COPD sufferers had been shown to become very dependent on O2 and had actually become addicted even though many didn’t actually need it on a continual basis. The conversation developed and I was told in no uncertain terms to not allow my wife to use my high flow Oxygen as her lungs could well be incapable in taking it and the results could be tragic. For the record my wife took the advice and eight years later she still doesn’t use Oxygen. Over the last two or three years I have been asking questions of consultant neurologists who prescribe O2 for CH if there is a risk and the responses have been they just don’t know. Understandably they know how the brain works but not how they lungs work with high flow. The O2 suppliers know how the lungs work but don’t know how the brain works but they, the O2 suppliers, along with the nuero’s, are concerned. In my opinion they should all be talking together given the amount of CH who are smokers and yet there are no checks anywhere in the world for COPD amongst CH sufferers as far as I know. For the record there are an estimated three times as many undiagnosed sufferrers as there are diagnosed sufferers of COPD.  As this is a strange set of circumstances there really is no one the Department of Health, The NHS or the MHRA who I can talk too about getting CH sufferers checked out prior to going in to high flow or UHF O2.  We all know that high flow O2 work very well (ten to fifteen minutes) to abort attacks and Ultra High Flow works even better, five minutes or so, virtually every time from pain to pain free. 

 
 
 
Chairman OUCH UK

Tue, 29/04/2014 - 21:47
duetto
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As you know i have mild asthma, I was told when first diagnosed at the hosp by the lung consultant not to use my oxygen I have at home for clusters when my asthma is playing up.

Not sure how I got asthma in the first place about 5 years ago, had always had good lungs and no relatives with lung problems. GP at the time thought it was because it was a very polluted area we lived in, moved away to clean pastures but asthma still around. Often wondered if verapamil may be linked.

Wed, 30/04/2014 - 10:48
NaomiR
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Thanks for your in depths response Mike - and duetto. This is all very interesting. I have probably inherited bronchitis from my mother. Saying that, I am a smoker (50 years - flipping heck). As my COPD seemed to be getting worse this winter, I bit the bullet and am now taking Champix - down to 3 ciggies a day (attachment/separation issues :tired:).

Interestingly my headaches had already begun to get better (2.5 years chronic) and continue to do so i.e., since around March they have simply got less and less, easily aborted, no meds, sleep...yeah.  So - what's that about - the natural end of a cycle at a certain time of the year, the efficacy of the demand valve, less smoking - the touching of Peter Goadsby's coat in the lunch queue????

I have never experienced a problem with the O2. I think the issue of addictiont to 02 is completely daft - of course people rely/depend on it if they are having difficulty breathing - however, have you ever sniffed a whiff for the fun of it (apart from the possibe treament of a hangover)? Saying that I keep wondering if I might dare a wee glass of spritzed wine - but the fear of it striking is too great, so I'll just wait a little bit longer. Keeping my fingers crossed.

 

Wed, 30/04/2014 - 13:17
Phil
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As you say, O2 isn't addictive,
(although the brain rewards itself for any action that continues the species with addictive drugs)
it's the dependency, the ease, the fear.
Also your body sprouts new blood vessels (vasogenisis) as required, which wouldn't be needed with a rich oxygen supply.

_________________________________________________________________________ Yeah I know, my coat's already on.

Mon, 16/06/2014 - 20:50
adrianabbott26@...
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I had a letter via the doctor to say that an appointment at the hospital could not be arranged as the respiratory nurse do not support cluster headache patients.

 

The letter also states that it appears to be an inappropriate referral for the treatment of cluster headaches.

seems like I am getting know where again as our hospital don't want to know.   Sort of pass the buck again.

Adrian Abbott

Cluster Sufferer

Thu, 19/06/2014 - 18:03
Mike
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You will have to go back to your GP and insist under "Choose and Book" of your LEGAL RIGHTS to select a specialist. Specialist can fill out a HOOF for ambulatory oxygen. Link below.

http://www.chooseandbook.nhs.uk/patients/choosing-your

If you want me to call you PM me your contact number and I'll discuss it with you

 

Mike

Chairman OUCH UK

 

 

 
 
 
Chairman OUCH UK

Thu, 19/06/2014 - 19:38
adrianabbott26@...
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I have made myself a pain at the hospital ringing to get an appointment.

Finally I got one on Wednesday afternoon and after 5 minutes they prescribed 8 freedom 600 with 

shraeder valve on each as well as the normal 15 litre connection.

 

they come in boxes of four which can be put in the car.

 

the orange oxygen sticker is no longer needed when transporting oxygen cylinders as there has been a law change recently.

Adrian Abbott

Cluster Sufferer

Tue, 22/07/2014 - 11:37
Amethyst73
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Am in oxford can get portable but have been told cant have the required 15 lts for 20 mins so having to ration my oxygen use which makes them a lot harder & the pain is worse as can only get short bursts then have to stop hoping my oxygen therapy nurse can help as been having to do this for past month after they saw my demand & got told off by gp

Mon, 28/07/2014 - 07:54
Mike
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Sorry, only just seen your comment about being told off by your GP. What on earth did he/she say? Is your GP knowledgeable on CH?

 

Mike

Chairman OUCH

 
 
 
Chairman OUCH UK

Fri, 26/09/2014 - 12:36
David_J
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Only just seen this, that's a right bummer about the portable cylinders, I used them more than the large ones becuase my attacks tend to be during the day when I'm out. Does this mean I need to ask the GP for 2 referrals, one to the neuro and one to a respiratory? Or can the neurologist liaise with respiratory and organise something on my behalf?

Fri, 26/09/2014 - 12:47 (Reply to #24)
Mike
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Your neurologist is considered a specialist and can prescribe the portable cylinders.

 

Mike

 
 
 
Chairman OUCH UK

Wed, 18/03/2015 - 14:38
clairewright_2
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Hi everyone,

can I just check whether there are any rules about portable oxygen in your car? Do you have to let your insurance know? Can you put it in the boot or does it have to remain upright? Can you leave it in your car, or is it advisable to take back into the house?

 

thanks

Claire

Fri, 20/03/2015 - 20:52
Val
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Hello Claire

Your portable cylinder will be fine in the car, I keep mine in the boot.  Your delivery driver should give you a little card to stick in your car window saying there is oxygen on board.  He should also give you a neat backpack to put the cylinder in, which will protect the cylinder.  We would suggest you contact your car insurers to say you carry portable oxygen.  It shouldn't affect your premiums, but if you make a claim and you haven't declared the oxygen on board, they could disallow your claim.  Same with house insurers for the large cylinders.

Hope this helps.  There is some advice on oxygen therapy in the Resources page, downloads section, which might be of further help to you.

Val.

Fri, 20/03/2015 - 22:22 (Reply to #27)
clairewright_2
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Hi Val. 

Thanks for your reply.  I best get on the phone to my insurance company!!

cheers,

claire 

Claire

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