Thursday, 17 June 2010
Meet the Patients at the Welsh Assembly
Yesterday four of us went down to the Welsh Assembly in Cardiff Bay. We shared a minibus with the four from Swansea Bay group. Peter Black was going to talk about the unfairness and difficulties we encounter when travelling by air with oxygen. So I had a long chat with him about my portable oxygen concentrator and how some airlines won't let me use that and want to charge me £100 each way to use their oxygen and I could find myself sitting next to a child with a gameboy or someone with a laptop, both running off the same kind of batteries. To hear the debate follow the link on the right hand side of the page. Select Plenary session on 16th June, then go to item 6, short debate to hear Peter talk on our behalf.
Later we had a long chat with Mick Bates about the fact that there is no rehab in Powys and the unfairness of the lottery of where you live in Wales. He has promised to do something so I have sent him my experience - living on the border of Neath Port Talbot and Powys. NPT has a good rehab service and a team of dedicated respiratory nurses to care for us when we are ill and to advise us on how to stay well.
Bethan Jenkins was very interested to hear of the difficulties of many patients in getting to the locations where rehab is held. This is a problem all over Wales. It is such a rural country with scattered communities and it is very easy to become isolated if you don't drive and you are far away from an infrequent bus route.