Walking with Oxygen Campaign - Living life with Oxygen
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Walking with Oxygen Campaign - Living life with Oxygen
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| A couple of days ago a fellow patient at the Brompton passed me details of your website – I am so pleased because I have found it really helpful and informative. I can identify with the problems you have experienced since February when the new system for Home Oxygen supply came into place – or rather didn’t come into place! I am with Allied Respiratory and have a concentrator for night time use. BOC, my previous supplier, had issued me with a concentrator that gently hummed but it was replaced by Allied for a cheaper model that is so much noisier that I do not feel able to invite anyone to stay the night because they would be unlikely to get any sleep. Apart from problems getting through on the telephone to Allied, my major grouse is about portable oxygen. I too was fortunate to have an Oxylite provided by the Brompton. This could be refilled as and when required thus enabling me to lead a near normal life. For portable use Allied use PD cylinders which are heavier than Oxylite, nearly twice the length and therefore much more cumbersome. Being of small stature I struggled to get one on my shoulder let alone walk with it! I contacted the head of the PCT’s and with his assistance Allied eventually supplied me with paediatric cylinders. They are smaller but one cylinder only lasts up to three hours with a conserver so I would need to carry more than two to reach the capacity of Oxylite – and who wants to carry 2/3 cylinders instead of one as in the past? Fortunately I am not totally reliant on oxygen during the day but, if I were, I know that with the present system the problems would be greater so I feel for people who are totally reliant and who have been placed in such a position. It was so much easier to go away for a couple of days when all that was needed to obtain a supply of oxygen was a prescription from the G.P. and a telephone call to the chemist at the destination. Allied ask for 4 weeks notice but I have not yet tested the waters. Prior to February, so not knowing how the new system would work, my two sisters (they carry my luggage) and I booked a holiday to France by train in September. On previous holidays I had contacted Air Products to arrange the supply of a concentrator at the Hotel where I would be staying and all went smoothly. I contacted Air Products this year to see if they still offered the service and, if so, how much notice was required. I was told 4-6 weeks!! I telephoned ARARD in France who could not have been more helpful. I was asked to send an email with my details and the next day I received an email confirming that all was arranged together with the name of the local contact. The concentrator was at the hotel when I arrived and I had a lovely holiday. Due to the transition period being extended I was greatly relieved to be able to take my Oxylite. Having to use heavier or extra cylinders could mean future holidays abroad will be out of the question. In these days of technology I do wonder why it takes a British company 4-6 weeks to arrange a supply when it only took me 2 days. I apologise for the length of this email but thought my experiences may help as I am similarly affected by the new system. I am happy to back you in your campaign. 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 intend circulating MP's with our evidence. |
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