Hi folks, I think the HOOF form on the site may need updating
Hi folks, I think the HOOF form on the site may need updating
Hi folks, I managed to get Oxygen out of my doctor, was a right mission though. Spent a few days getting the doctor to understand what cluster headaches where, but after that she was great, however she had a lot of problems getting the Oxygen people to accept the HOOF form. The good news is that I got to see the form that was successful before the GP sent it off, so it may be useful to update the HOOF form? Apparently a lot of the problems were in the consumables section, they didn't like "100% non-rebreather", it had to be just "non-rebreather" and they wanted a tick in the mask % and type field.
Here's the form that worked for my doctor and was accepted by the oxygen company, hopefully it's useful 
Next problem is getting decent amount of Sumatriptan injections (they seem to insist on giving me two injections at a time) but some progress is good progress
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Hi Azelphur
I've just checked our HOOF form under resources and the only thing wrong is the '100%' and the missing tick! The form we have there is one that was approved by both the Oxygen companies and the NHS, so not sure why Dolby are upset about the '100%' and missing tick. All the other companies accept this form.
Val.
Administrator
Weird, Dolby kept on rejecting the form, but then wouldn't tell me why they were rejecting the form. After 3 rejected forms I got the doctor to call Dolby, which resulted in the above form which was successful. Suppose if it's approved by the NHS and the Oxygen companies then it should be correct. Maybe the requirements for the form have changed recently, or maybe Dolby were just being difficult. Either that or maybe my doc ignored the pre-filled form I gave her and filled in a new one incorrectly. Guess we'll never know
If you have a demand valve but are not on the trial which form should we use, or am I being daft and have missed something?
The trial one has 1 cylinder preprinted in which for me is not enough. The normal form doesn't' mention the Schrader valve.
I am with BOC so all their cylinders have the valve so I use the normal form. I don't cross out the mask as they query this with the doctors surgery so I just tell the delivery guy I don't want one.
I probabably complete these forms more often than others might do as I am Epsidic and return the cylinders after each bout, normally twice a year and have to complete a new form each time I want them back. I have the doctors surgery well trained so get it sorted quickly although it would be good if I could do this direct with a call to the supplier. If it was easy to do I am sure more sufferers would return them after a bout knowing they could get them back with one phone call to theIr supplier and would probablly save the NHS a fair bit of dosh.
John
John, we do need to amend the details regarding the demand valve diary study. The diary study trial has ended and the demand valve is now being rolled out across England and Wales. The HOOF form for demand valve is correct and only one cylinder is requested because demand valve oxygen works in a different way to standard high flow oxygen therapy.
The cylinder needs to just be turned to 'ON', not to a flow rate. the demand valve delivers the oxygen at up to 200 litres per minute. The valve itself opens as you inhale and shuts off when you exhale, so the oxygen is NOT blasting out all the time. It is possible to abort a cluster headache attack in a very few minutes with demand valve and 2000 litre cylinder lasts a long time, certainly you would have plenty of time to order a replacement. This is why the demand valve has been adopted, because it works faster and costs the NHS much less to continue supplying cylinders, as not so many are needed.
Apologies for the muddle.
Val.
Thanks for the clarification Val.
Whilst I appreciate one of the benefits of the demand valve can be to reduce the number of cylinders this may not always be the case.
I was never ever able to fill my lungs fully with the mask and bag, the demand valve allows me to do this. It could be after a lifetime of long distance running and swimming as hobbies that I have extra capacity I don't know but I doubt I am alone in this.
My attacks are aborted after 6 minutes with the demand valve and I stay on it for a further 10 minutes to prevent rebounds. I always fill my lungs with it, as you say it can deliver up to 200 litres per minute. At the peak of my bout attacks can be between 6 & 8 in 24 hours and a cylinder can empty in 2 to 3 days. There is no wastage with me whatsoever.
Restricting the number of cylinders to 1 per delivery would mean I reorder every time I receive one and seeing the delivery man twice a week or more . This doesn't seem right and perhaps causing a problem for ourselves that sufferers don't need over and above all the other problems this condition causes.
Perhaps I am a heavy user, we are all different, I could live with 2 cylinders but please not one. I have suggested in my previous post how an on call arrangement direct with oxygen suppliers could encourage Epsidic sufferers to return their cylinders after a bout knowing full well they could get them back almost immediately with one phone call to their supplier. On the rare times I read the Ouch Faceback site there are often posts encouraging people to keep their cylinders between bouts. Given the number of Epsidic suffers the savings of returning cylinders would be very significant. The doctors authority could be renewed/reviewed say every 2 years or so. This combined with use of the demand valve would bring real cash benefits to the NHS and making the system so much simpler.
On a real positive note since using the demand valve the length of my bouts appear to be reducing. They have been about 5 weeks, my last one was 23 days and I put this down to having full dosage of Oxygen and minimal use of Sumatriptan.
John
I understand your problem now, John, I would suggest that you call your order line and ask them to deliver you another cylinder, or at least two on the next delivery so you have one on and one spare. They should do this for you. Baywater did it for me.
And if you have no objection I'd like to forward your comments to the trustees regarding both 2 on first delivery and further, return of cylinders by episodics. The Trustees need to hear stuff like this from members, so don't be afraid to ask questions!
I'll keep you posted with what goes on.
Val
Thanks for your response Val, I am happy for the trustees to see any posts of mine and I am of course happy to provide more information if required.
i don't currently have a problem getting the Oxygen I need but preprinted Hoof forms with 1 cylinder would make it more difficult but thanks for your suggestions.
One point on returning all cylinders to your supplier that I didn't mention before is that the suppliers will only accept cancellation from the Doctors surgery. In my case I take a letter I have prepared to the surgery, the receptionist gets the duty doctor to sign and faxes it off to the O2 supplier the same day. It is really difficult to do the right thing and can understand people not wanting to return their cylinders after a bout ends particularly as some will have had great difficulty getting the doc to prescribe in the first place.
John