Help needed

Ian,

it wasn't announced anywhere in November, as you well know, NHS England are still enabling demand valves into their Oxygen Supply contracts, which was anticipated to be complete by November 2016, but some regions are somewhat dragging their heels on the subject.

NHS Scotland are putting together a formal trial for SIGN (Scottish equivalent of NICE).

Demand Valves and their associated tank setups have been available on the electronic HOOF from  before the November date.

So NHS England still is a postcode lottery with regards to being able to obtain under the NHS a demand valve. 

Hope that helps

Scott

I was actually asking why it hadn't been mentioned here but widely known on Facebook some members myself included now dont use the fb page
Ian

Wow. I didn't know that. If you already have O2 delivered, can you still use a HOOF form to try and get the demand valve equipment? I bought mine through OUCH years ago - it's wonderful, but it's a pain to keep disconnecting to transfer tothe car if I go out. I have often thought of purchasing another (my life line).

Thats a good point Ian. I dont use FB, and had no idea about this either. 

You may have read the lengthy and robust threads from last year about the apparent 'migration' of this forum to the great Data Harvesting Machine that is FaceBook.  

I dont disagree that it is the 'way forward'  for many, but information provision does still need to be made  HERE for those who dont- or cannot- use it. And those who have paid a membership fee to access help and advice on this website!!

Yours in irritation,

I can understand your irritation and frustration.

Well done Ian for spotting this and bringing it to the forum's attention.

Sean

Ian,

I must be miss reading your question then.

as per above tho, no announcement has been made on Facebook, to be clear, if OUCH is making a formal statement it happens in the following locations, OUCH website under latest news, OUCH emailshot, and the OUCH Facebook page and twitter feeds. 

Individuals in various locations including the helpline, have asked about demand valves and those individuals have been answered in the location where they were asked, much like you here today.

Lisa, as per my comments, if your oxygen provider is supplying Demand Valves then you can get your hoof form altered to supply one, as stated it is somewhat of a postcode lottery currently which is extremely frustrating for all sufferers and the team at OUCH.

Miss Kitty

I moved away from the Facebook Group space even thou I'm an avid user of FB in other respects as I don't agree with OUCH limited resources being used to screen posts for propriety, when the users haven't paid to keep OUCH financially viable. Don't ge me wrong - FB is a great space for awareness, discussion and sharing of knowledge and it was absolutely right that OUCH opened up a group forum. But (big but) apart from vetting applicants to the space and ensuring the site is used respecfully, I think OUCH should just have a permanent waiver stating that they do not necessarily support any views or suggestions made and point out the existence of the OUCH website and member forum for accurate information and excellence. This might reawaken this forum, encourage FB users to become OUCH members and just as importantly - cut down on the workload of OUCH volunteers! Policing posts on FB must be very time consuming

Lisa

Lisa

I could not agree with you more. My view now remains the same as it did when Mike and I had a friendly debate over the issue back in about 2011 ish I think.

I believe FB is an invaluable tool, but it should only be used to draw in sufferers and supporters like a bright light attracting insects in the night (excuse the analogy). As you say, and for all the reasons you mentioned, there should be a clear message on the FB page stating something along the lines of:

'Welcome to OUCH UK where you are amongst fellow sufferers and supporters. Please feel free to use this page for general chat, fun things (we all like cheering up during a bout) and fundraising issues. For various good reasons we do not discuss medications on this page, nor do we provide any advice via this page. If you would like any advice or information regarding possible treatment options then please visit our website www.ouchuk.org where for an annual fee of £13 you can join the expert patient group forum. This forum is moderated by extremely experienced Trustees and Officers who volunteer to offer help and support to fellow sufferers. It is a safe place where you will receive appropriate advice.'

This strategy would then funnel new sufferers and supporters into the appropriate place ensuring them the best possible safe advice where they can find the PRIMARY source of all information. This would increase funds available to OUCH and help channel resources to the right areas, thus reducing the workload for the volunteers.

Sean

Scott and all interested members commenting
The biggest point we have missed here is OUCH UK have made a phenomenally huge Step forward in the first line abortive treatment of clusterheadaches since oxygen therapy started!!!!!!!!!!!!!!!!
We should be shouting it off the rooftops it should be on the home page in big flashing letters, Yes the fine details have to be thrashed out but that is just a matter of hopefully not too drawn out negotiations about money, this is an achievement that all involved from the inception to execution should be recognised, pride shown in what you have all done a relatively small group of people have taken it upon themselves to improve the most important pain relief we have!
Instead the information has been filtered out :( Showing pride in this achievement it could encourage a dv supplier to try and improve or further tailor oxygen therapy to the needs of sufferers but not just in the UK it could encourage other sufferers worldwide to push for it more! It could help give sufferers from all over to push more for better treatment!! We all know how hopeless the condition makes you feel so can we please start shouting out a bit of hope for all our cluster friends whether forums (us grouchy old timers ;) ) fb users (anyone who can type faster than me) tweeters (people who make a point in few words).
This website is the place doctors send patients all the promotional gear points to here
Lets just get the message out there!
Peace love and harmony
Ian
(zanycheff)

Well put Ian!!

Mr Git (grouchy old timer) *unknw*

Thank you Mr Grouchy Old Git *crazy*

i feel this is an incredible opportunity to raise the profile of the charity and get better treatment for all sufferers worldwide ,show them how to run small effective studies, share the data with them .

I'm sorry Scott this may hurt a little but no insult intended :)

We have been far to 'British' and reserved in how this fantastic result has got out we actually need a bit of 'donald trump going look what we did' (I wouldn't have voted for him ) Hope it didnt hurt too much Scott

we have to promote this to other support groups if it helps save one life any effort will be worth it we have lost far too many of us over the years to 'keep a lid on it' so to speak ,we are becoming very insular but people suffer the whole world over lets help them with it too ,then more folks will look to us here for the guidance ,more exchange of ideas etc potentially investment in research too.

This godawful condition isolates us as individuals enough please don't let it make OUR Charity isolationist and insular this is a big step forward for all sufferers every where 

Ian

Zanycheff

(more often than not an extremely grouchy old timer but i'm working on it )

I think we're just misunderstood Ian. Our inner soft, mild-mannered, touchy-feely side is just waiting to burst out! *lol* 

My lol didn't lol. Is that because I'm a Grumpy Old Git? *shok*

*lol*

I think a lot of us are misunderstood *crazy*

When each and every area of the country has free access to a demand valve then trust us it will be absolutely shouted about. 

Ian I know you are a man well versed in the world of Facebook and of the wider world in general you have seen the frustration that Dolby in specifically the South of the country have caused by refusing to budge but acknowledging that the have isssued them to some customers.

so when the remaining supply companies fall into line. That when the announcements will come not before.

As for announcements, I stood up and requested Demand Valves for all in the European Parliament last year ahead of cluster headache awareness day. This year cluster headache awareness day is based on empathic experiences, why don't you and Sean engage with us on that and lift the lid off the condition once more. 

Hi Scott 

Does this mean no announcement until after the trial in Scotland and hopeful approval?

If so how long would that take ?

As for the stalled rollout yes I know who frustrating it is particularly as some suppliers are being shall we say flexible with the truth at times ,however dont you think that if it had been more widely known here that there would have been more phonecalls to suppliers or letters to MPs ?

Yes i will of course join in for awareness day although i hope you can reccomend a good lawyer for me as so far i havent worked out how to give folks the red hot knitting needle in the eye effect without getting sued ;)

Ian 

(zanycheff)

I would never demand that England waits while Scotland carries out the trial, the trial team have our study data to help them out. When England's ducks are in a row. Then there will be an announcement.

Very odd i seem to remember on the fb posts about the cardiff conference about an announcement to be made about vast improvements in oxygen therapy to be made , but after cardiff got cancelled due to lack of support ( memo to self must update the website) ,(oops forgot again) you when asked what it was to be said that the demand valve was aprroved and would be rolled out soon , was this before all the aforementioned negoitiations had been completed ?

please don't bothe deleteing all the threads from facebook someone has screen caps :)

Ian

(zanycheff)