Walking with Oxygen Campaign - Living life with Oxygen
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We have been in touch with a Breathe Easy member in Wales who has taken a creative approach to the issues many of us have found. When you look at Breathing Space you will see adverts for clever equipment such as portable concentrators and other advanced gear from our cousins in the USA. However when people are stuck having problems with the various Oxygen cylinders on offer they think there must be a better way. Whilst we feel that people should not have to buy their own equipment due to the failure of the service, it is understandable that people will dip into savings to improve their quality of life. After all people with COPD value their lives and so will think "I want to break free". But Margaret has been trying one of these portable concentrators on Loan. Her point of view is if these cost say £3,300 each then if a PCT/Health board bought in bulk then the cost would be reduced and then patients would need no deliveries. Perhaps a small service team that check out the main concentrators. Given the projected overruns this sounds like a logical idea. What we see here is that people on Oxygen throughout the country want improvements that give them their freedom. Let Margaret tell you more in her own words. Three years ago I was diagnosed with COPD, that is chronic obstructive pulmonary disease. It was a huge blow, which seemed as though it was going to seriously change my life, limiting the things I can do. However, after receiving excellent care at the Neath Port Talbot hospital, with Doctor Banks, and having the follow up respiratory rehab at Cimla, I was shown that I could regain control and continue with daily activities, holidays and visits to friends and family. I took on board all that the rehab nurses taught me and followed up with regular sessions at the gym. Indeed life continued as it had been before, if at a slightly slower pace. In September this year my condition worsened and I now need oxygen for exercise. That has taken a lot of getting used to but I am still going to the gym three times a week and can walk in the countryside again so long as I carry a canister of oxygen weighing 4 kilos, to supply the oxygen I need. This is quite a weight for someone with lung disease. There are technical problems with the equipment which limit it's use and efficiency in the way the oxygen is delivered. However this has put huge restrictions on my life. Air Products have been very helpful, allowing me to have extra canisters at my house, so I don't have to wait in for deliveries. But I do have to give them four weeks notice, and produce a HOOF form completed by my doctor, before I go away from home - so no more impulse trips to see my grandchildren who live in Derbyshire, or other friends or relatives who are dotted around the British Isles. Visits overseas are difficult and expensive. I have been researching various means of supplying oxygen to people like me and by far the best method is a portable oxygen concentrator. No more canisters so no more waiting around each week for deliveries. These portable concentrators can be taken on aeroplanes. No more having to pay up to £100 a week to have oxygen supplied abroad or £100 each way on some flights. Indeed some airlines won't even allow oxygen cylinders onboard. As well as all these advantages for us the patients, the concentrators are cost effective as well. They cost £3000 to buy privately, and so surely much less in bulk, and with the enormous cost of providing bottled oxygen to each patient, week after week for the rest of their lives, they will soon pay for themselves, and indeed save the Health Boards money. Details on the concentrators can be found at www.oxygenconcentrators.co.uk. Surely there is also a Health and Safety issue with all this oxygen in private homes and cars I am the secretary of the Neath Valley Breathe Easy Group, and we are having a demonstration of these concentrators on Thursday 18th January. We would welcome you to come and see for yourself. I am doing my best to keep healthy and active and to stay out of hospital so please could you look at this as a way forward to treat and help all COPD patients who need oxygen on a daily basis in order to live a full and meaningful life I sent this e-mail to all Welsh Assembly members, local GPs and other Breathe Easy groups in Wales - all have been supportive and some are coming to the demonstration on 18th January. Hopefully we will begin to get the message across. For the last month I have had a portable Freestyle concentrator on loan from Smile Rehab - thank goodness - this morning my last oxygen cylinder is leaking so I can't use it and my liquid oxygen won't fill, it just vents out and loses the lot. The portable is wonderful, I have just had a week away from home with no worries, and for those who are able, it can go on an aeroplane. A few further comments below I don't wait in for cylinder deliveries. I have arranged with my delivery man and Air Products that I can leave my empties at the back door and the same number of full cylinders are left - just like in the old days with milk. - it works too Tubes blow off so I was given jubilee clips - Why did I have to ask in the first place. Now the connections just leak, so my precious oxygen just goes off into the atmosphere and is wasted. My conserver is erratic, once I start walking it gives oxygen on each step, not on each intake of breath, so sometimes it blows in as I breath out . Co-ordinating breathing and walking can be very tricky. The replacement does the same thing. The call centre told me to hold the conserver in my hand. Can't print my reply ! When speaking to Margaret one can see that she has picked herself up from her experience and has got on with life. She told us that the Nurse from Air Products was most encouraging and was a great help. Like myself she wants to be able to just get up and go when she wants. The problem for people with Lung conditions is that you have to make the most of any good Window you get. The portable concentrators are a real clever idea and maybe could form part of our equipment set. However from comments by users it qould appear that some have been unsure about how much puff they get out of them. For many other medical services our Doctors are effectively able to buy from wherever they can including private clinics , but for Oxygen we have a privatised one size fits all solution? |
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