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New House Of Commons Debate -17th of March |
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Paul Pennington 
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Joined: 23-February-2007 Location: United Kingdom Posts: 957 |
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 Topic: New House Of Commons Debate -17th of MarchPosted: 11-March-2010 at 12:52pm |
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I'm delighted to let you know Nick Ainger MP & PHA-UK trustee has secured a short main chamber debate on Oxygen & Transportation issues next Wednesday the 17th of March...I'll have more details as soon as they're available...
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Jets
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Joined: 04-October-2006 Location: United Kingdom Posts: 924 |
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Posted: 11-March-2010 at 4:02pm |
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Sounds interesting!!!!
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Lupus for 27 years or more and secondary PAH for 5 years but only diagnosed in Sept 2006
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karen
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Joined: 22-November-2004 Location: United Kingdom Posts: 2300 |
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Posted: 12-March-2010 at 12:53pm |
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sounds very interesting
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Lu Lu
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Joined: 11-February-2005 Location: United Kingdom Posts: 867 |
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Posted: 12-March-2010 at 1:16pm |
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That's great, Paul, at least more people will listen to our plight.
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Live every day to the full, as you'll never live it again.
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Magnolia
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Joined: 05-May-2006 Location: United Kingdom Posts: 779 |
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Posted: 12-March-2010 at 1:49pm |
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Brilliant - good result. Bit like a tap dripping, the message will get through at some point. Pleased to note that my MP has finally signed the EDM - took him long enough. Might take me until the election after next to decide to vote for him
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Paul Pennington
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Joined: 23-February-2007 Location: United Kingdom Posts: 957 |
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Posted: 16-March-2010 at 2:28pm |
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Well we've been on the case helping Nick's office pulling together the briefing materials and very much looking forward to tomorrow afternoons debate.
The election will give everyone a chance to quiz candidates on where they stand on free portable concentrators, why they have to pay prescription charges for long term conditions like PH, invisible disability issues and of course why the DWP don't give DLA automatically to people living with PH and why too many people have to go to appeal to win the right to this benefit.
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Jets
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Joined: 04-October-2006 Location: United Kingdom Posts: 924 |
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Posted: 16-March-2010 at 6:57pm |
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Good luck Paul i do hope all goes well!
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Lupus for 27 years or more and secondary PAH for 5 years but only diagnosed in Sept 2006
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joanielg
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Joined: 02-September-2008 Location: Australia Posts: 210 |
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Posted: 17-March-2010 at 6:35am |
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Good luck Paul, this will set the finest example to the rest of us as to what can be done. As happens so many times our countries will pick up on it too with a bit of luck and lobbying by us.
Joan in Australia |
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PRESIDENT PHA Australia 2010
DX IPAH 12/2004 O2 24/7, CPAP Frusemide, Nifedipine, Spiractin Off Sildanifil 11/09 Started Ambrisentan 11/09 Back on Coudamin after 2 years |
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Paul Pennington
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Joined: 23-February-2007 Location: United Kingdom Posts: 957 |
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Posted: 17-March-2010 at 10:31am |
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Thank you Joan.... Qantas is, sadly one of the airlines that makes you book a flight before they can go into Oxygen provision with you (you have to fill in one of there forms and include the booking reference/flight number you are on before they tell you how much oxygen is going to cost !!)
They are part of the one world alliance with the likes of BA and others..it might be 'one world' but in this alliance it's up to eight seperate supplemental oxygen policies operated by the company's within it!!
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Paul Pennington
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Joined: 23-February-2007 Location: United Kingdom Posts: 957 |
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Posted: 17-March-2010 at 12:44pm |
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WHAT: ‘End of Day Adjournment Debate On The Use Of Personal Oxygen On Public Transport ’
WHEN: 17TH OF MARCH 2010 http://services.parliament.uk/calendar/ WHERE: HOUSE OF COMMONS MAIN CHAMBER WHO: NICK AINGER, MP & PULMONARY HYPERTENSION ASSOCIATION UK (PHA-UK) TRUSTEE WHY: Speaking ahead of today’s important adjournment debate Nick Ainger MP & PHA-UK (Pulmonary Hypertension Association UK) Trustee told ePolitix, “Access to transport for people with disabilities has improved, but huge barriers are still in place for people who need supplementary oxygen.
Many people with breathing difficulties need either cylinders of oxygen or electronic oxygen concentrators to achieve even limited mobility. The oxygen is as essential to them as a wheelchair. However, while a wheelchair user rightly expects carriers to accommodate them without argument, oxygen users face infuriating customer service, huge extra charges and can even be refused access altogether.
Flying proves particularly difficult, and expensive, for many. A “secret shopper” **survey of 71 airlines carried out by the Pulmonary Hypertension Association UK, of which I am a Trustee, showed that two thirds refuse to allow patients to bring their own oxygen on board.
Scandalously, most then charge patients hundreds of pounds to supply them with oxygen directly from the plane. Charges start at around £50, but can run into thousands - Alitalia make patients pay the price of a second seat for the oxygen they supply.
Poor customer service is also a big problem. Customer service agents often don’t know the airline’s policy on oxygen, or in some cases refuse to reveal it until passengers have bought tickets, even though in many cases, passengers cannot get refunds if they need to cancel because the oxygen they are offered turns out to be too expensive.
Shockingly, airlines still reserve the right to turn oxygen users away even after they have followed all the rules and paid their fee. One passenger who had liaised in advance with Ryanair, and paid her £100 for their oxygen, was allowed to board the plane before being thrown off and left standing on the tarmac after the captain and flight crew exercised their discretion and refused to let her fly.
Some airlines are changing their policies in the face of complaints from passengers – Thompson dropped charges for oxygen in September of last year, and I welcome that move. Airlines like British Airways, Cathay Pacific and Virgin Atlantic have already scrapped charges for providing oxygen, as have budget airlines Easyjet and Thomson's. If those airlines can provide this service for free, so can others. However, too many airlines are refusing to back down.
Airlines are not the only offenders. A Stagecoach bus in Burnley told a mother that the oxygen her son relies on was a “hazardous product”, despite Department for Transport guidance stating that “there should not be a problem in carrying oxygen cylinders” on non-smoking buses.
Other passengers have been detained at the Eurostar terminal or refused entry to the London Underground on “safety grounds”, although there is no evidence that oxygen poses any risk.
That is not acceptable. We need to raise awareness and improve understanding until buses, trains and planes stop refusing patients the freedom to travel.”
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karen
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Joined: 22-November-2004 Location: United Kingdom Posts: 2300 |
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Posted: 18-March-2010 at 12:12pm |
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Hi Paul
guess what i got a letter today from Angela Smith, my local MP. Saying she finds the price we have to pay for oxygen is terrible and she also said she shall see what she can do to help. About time, i sent the letter to her months ago. Still better late than never a. |
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Paul Pennington
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Joined: 23-February-2007 Location: United Kingdom Posts: 957 |
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Posted: 18-March-2010 at 1:17pm |
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That is good news karen...thank you for writing..
We nearly missed the debate yesterday as it was on at approximately 3.30 for half an hour(a couple of hours earlier than we'd expected, thankfully Nick Ainger, advised us to get there early just in case)...and we spent ages getting through the security system..its even tougher than it was before!!...
In the debate, Nick was brilliant, a superb trustee and advocate for people with PH...a really genuine and decent person, like all the pha-uk trustees..he's a real pleasure to work with and for...
The Transport Minister has personally intervened in the two bus company cases Nick raised in the debate...the transport minister also says he will make representations to the European Commisioners who are due to update their guidance on transport and the disabled shortly on airlines and oxygen/breathe freely report...which again is encouraging. Amazing to think that in 24 months PH has had such prominence and support at Westminster..all three of the EDM's that Mr Ainger has put forward have had great backing thanks to everyone's hard work..every PHA-UK member who has taken the time to write/email/call..help with the research..talk to the media has really made a difference...
If you didn't manage to see the debate yesterday, this link will take you it http://news.bbc.co.uk/democracylive/hi/house_of_commons/newsid_8571000/8571047.stm
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Rita Barnard
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Joined: 26-November-2004 Location: Wales Posts: 775 |
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Posted: 18-March-2010 at 2:18pm |
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I also got a letter from Roger Williams our MP stating he would do what he could.
Well done to all for getting the debate
 Rita
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To receive a smile, give one away
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karen
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Joined: 22-November-2004 Location: United Kingdom Posts: 2300 |
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Posted: 18-March-2010 at 9:33pm |
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Well done for the debate very interesting
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Lu Lu
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Joined: 11-February-2005 Location: United Kingdom Posts: 867 |
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Posted: 19-March-2010 at 12:46pm |
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The debate was excellent. I have sent the thread to our 'Thanet Breatheasy Committee'. thank you Paul. |
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Live every day to the full, as you'll never live it again.
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Miriam
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Joined: 20-March-2006 Location: United Kingdom Posts: 2872 |
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Posted: 20-March-2010 at 1:03pm |
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Yes, well done.
What I find disappointing is an almost House of Commons! So what are those signatures all about? Lip service? Oh alright, I'll be kind. It was empty because the debate was earlier than scheduled
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Laugh, Love, Live
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Paul Pennington
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Joined: 23-February-2007 Location: United Kingdom Posts: 957 |
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Posted: 20-March-2010 at 4:19pm |
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Did you read the above posts miriam..we got the transport minister personally involved with the bus companys and making representations on behalf of the british government to Europe on airlines...you can have a packed house and still not get the government to act...because of the support and all the hard work of everyone we have secured two debates in one year on one issue, we know of at least 60 letters being sent to Paul Clark, Lord Adonis & Lord Mandelson by concerned MP's/MSP's/AM's and we've galvanised the British Lung Foundation into action, made many friends at European parliamentary level, Welsh Assembly and Scottish Parliament...laying the foundations and the first couple of floors!!... for future campaigning on behalf of the PH community....
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Miriam
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Joined: 20-March-2006 Location: United Kingdom Posts: 2872 |
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Posted: 21-March-2010 at 5:45pm |
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Yes yes, read that and I'm not belittling the effort and success of it. I'm just moaning about the lack of MP interest.
You have done, are doing and will continue to do a cracking job (you know I'm a fan) and yes, you're right, better to have the ear of 1 person in the right position rather than more who can't do much about it.
I just find it sad that they didn't show up for the debate.
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Laugh, Love, Live
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