A while ago the CF Trust asked to give a presentation to BOC (British oxygen company) and didn't think too much of it, however as it loomed nearer it suddenly appeared that I would be speaking in front of the key representatives for 20 BOC related oxygen groups worldwide. Slightly more nerve-wracking than I thought then.
However the day itself went really well. Firstly I must point out this was the company that supplied my chemist with Cylinders, when Oxygen supplies were good. The changeover (a result of privatisation) was to a different company entirely, although I obviously aired my grievances to ensure that everyone present would be acutely aware that this mustn't happen to them.
I had to speak for an hour, so I chose to educate about Cystic Fibrosis as much as possible, so included a great amount of detail about CF and about life living with it. It was pretty similar in many ways to other talks I have done, but with a lot more focus on oxygen. Obviously.
I was overjoyed to be given the chance to talk to BOC. I think young people using oxygen is a greatly neglected area, and this belief is supported from the very first booklet presented to me when I initially received my oxygen concentrator. There was a nice smiley woman, glamorous looking, but definitely in her 60s, sitting in her armchair smiling wearing her nasal specs with the concentrator behind her. The majority of advice, expectation of needs and service is angled towards older (predominately COPD) patients, which is quite understandable seeing as they make up a vast majority of the customers. However us young folk - not only pwcf but those with lung diseases like Rachel and Nattie have who I have talked about before – we are a significant group too and we have very different needs.
Living as a 20-something on oxygen, you want to go out, you want to carry on living, go to restaurants, out with friends, perhaps even clubbing (only did it once but damn glad I did). I wanted to talk about the psychological issues but wanted to do something which would make the assembled understand a little better what it is like going out for the first time wearing nasal specs. So as I broached this subject, I presented each person with luminous thin strips of post-it notes which they were instructed to stick to their face. An amusing site, but a serious reason behind it; the acute knowledge that there is something on your face which shouldn’t be there but that everyone can see…that’s what I needed them to feel .When I told them all they could remove them several of them actually kept them on, which I saw as a gesture of support and empathy, and I was touched by it. Either that or they liked the luminous colour against their skin...
I met some great people and I hope that I gave them a good idea about what living with (not just living on, but living with) oxygen is like. Whilst I am free of the constraints of 24 hour O2, so many people, old and young, require it 24 hours a day, and for these people it is absolutely vital that they have a good quality service run by supportive and empathetic people who understand their customers’ needs.
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5 days ago