Walking with Oxygen Campaign - Living life with Oxygen
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Walking with Oxygen Campaign - Living life with Oxygen
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When examining the impact of this service the only way is through the stories that people can tell. When I was in the Brompton in 2006 with a Chest infection I spoke to 3 patients about their experiences and in that snapshot one can see that the service has a long way to go. I also have met people at Hillingdon Breathe Easy and at the Air Products User day who have all had their own battles. From these beginnings I have had a lot of people contact me with different stories. The main point is that people who have a lot to contend with, have had to fight for what they need. Even in September 2007 I have still been contacted about Holiday issues, availability of Liquid Oxygen and the service given when purchasing a Portable Concentrator.
If you have something to tell then please let me know. I can take them as anonymous or however you want. Margaret in Wales is frustrated by certain Technical problems like many with the Air Products equipment, but has decided to campaign for alternatives. And she is trying to get the Welsh Assembly to listen. One key aspect for her has been the flexibility. From Lisa's experience you can see that there is a common thread there. Lisa had a transplant and is now out of Hospital. She appeared on Watchdog and really made some telling points overall about the Oxygen users lot. Glenys was very much like myself in enjoying life and leading quite a flexible existence. She has pointed out some of the limitations and like Lisa is with Allied Respiratory. I have known Susan for a long time and she was in the Brompton at the same time as me. Her West Country region changed from Air Products to BOC. However she had a long period stuck inside with no Oxygen. Carol was another Allied Respiratory person whom we have spoken to and really her health has suffered during this period. From Charlotte we see another example of how the system breaks down when the person moving house will still want Oxygen at the new place. Richard also describes his experience of dealing with the system. Emily is another Cystic Fibrosis patient who is trying to live life to the full. However she was not being allowed to. On the 5th January she had her Transplant and she is back living life to the full and still campaigning that others will also get a Transplant. John is a man who is helping others and really knows a lot about what is going on and through his website provides a lot of useful and helpful information. Mary's son Ian contacted us about his 89 year old mother and this shows that faulty equipment can be dangerous. The equipment does not work for her and so she should have been supplied with cylinders that she can use. This is a known problem. What you see is that there are people out there who just happen to be on Oxygen but want to lead their lives as best they can. We really do enjoy fresh air and life and we treasure it so much. The group above from what i can make out are the tip of the Iceberg. Please contact me at Kathy@Oxywalk.org and let me know about your experience. Also it would be helpful if you let me know your MP as we have circulated MP's with our evidence. |
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