Walking with Oxygen Campaign - Living life with Oxygen

When I was at the Brompton in the autumn of 2005 I learned about the new Service and some of the key advantage it should bring. My concentrator would be provided by Air products rather than Vitalair and I would receive deliveries of lightweight ambulatory sealed Portable Oxygen cylinders instead of re-filling my Oxylite from larger cylinders. There would be a built in holiday service and I thought that if the latest equipment was being used then this would be great. Also I knew it was due to start on February 1st. But during December 2005 I thought I had better find out what was going to happen as I am a busy Oxygen user. In January 2006 I found out more about what was on offer and was in contact with Air Products to clarify what I needed and to do my homework. This was when the alarm bells started to ring for me. My first experience was that the when I first spoke to them about my concerns about the lightweight cylinders (which are heavier than my current one) they told me that they are easy to carry. As a slightly built woman with limited Lung capacity, I found these responses insensitive. So I ensured that I had enough prescriptions and Oxygen in and awaited the big change. I also went through in detail the HOOF form and the various bits of information received with my Doctor to ensure that the HOOF form covered everything. It was faxed prior to the big O-Day and I sat back and waited to be contacted. However the big O-Day passed with many problems and I thought I would run out of my Oxygen but then the Doctors were allowed to prescribe Oxygen to take the pressure off. My fears were allayed for the moment. I also had a delivery of 3 of the smallest Freedom 300 cylinders which I thought I had better try out.

I tried them out and found that I struggled with them as the bag was too big and also the tubing kept blowing off. But I was happy to continue using my Oxylite and so I enjoyed my days out and went on a holiday to the New Forest. But as we came into summer I felt that I needed to get something organised. But when I got in touch with Air Products I was told I did not exist and could not have had any Oxygen off them. I made a written record then of all conversations and dealings as i started to get concerned about what was happening. Problems occurred which led me to get in touch with various people and to write to the Minister. The Primary Care Trust contacted me as a result of my problems. I had come across problems that I felt were quite frightening for Oxygen users. The minister was far too busy to reply, but I received a PR blurb style answer from a Department of Health official telling me that it was all wonderful. But by this time I had reached the point of depression and was in tears when telling people about what had happened. I was told by an Air Products person that the smaller Freedom 300 which I found too heavy was in short supply and that the Department of Health would not fund any more. I have been told by the Primary Care Trust that this is not so. But my dealings left me feeling no confidence that Air Products could help me. I just could not bring my self to phone any more after having deliveries that did not arrive. I was convinced that there were some fundamental issues about the operation of the service. The thought that I would be losing my independence and unable to get out of the house unless someone was with me just left me in tears.

It was at this time that I was contacted by the Today program and also BBC News online about the story and I got some of my frustration off my chest. I had also written to Andy Burnham MP (Minister of State for Delivery and Quality) about the poor reply in order to explain the problems. My own MP Steven Pound (who proposed the Transplant Opt Out Bill) is pushing on this issue and hopefully can get some access to Andy Burnham. I have since had another reply from another official to say Andy Burnham is too busy also not answering my concerns. I have also become more aware through research and talking with various people that I am one of many who have had problems. Recently and maybe a result of my correspondence I have seen a Nurse from Air products and have also started a trial with Liquid Oxygen. But does every patient have to go through this aggravation. I have been very lucky to have had my Oxylite as I have the flexibility to go away at the drop of a hat. To plan ahead when your own Health is in a yo-yo situation can be difficult. I need that flexibility. I also need to walk as that helps me keep my Lungs clear. I don't have much of a Lung Capacity but I must walk to keep myself fit. The flexibility and re-assurance of Community Pharmacists has been a factor in keeping me well over the past 7 years whilst on Oxygen. To be able to pick up Oxygen when I visit Northern Ireland and re-fill my cylinder to then walk down the Giant's Causeway or along the beach makes it all worthwhile.  

Once I decided to create a website I found through research and also through contact with other patients that this situation is a real disgrace. I have been noisy and tried to make waves and have had the support of my PCT and others to get some of what I need. But others have been less fortunate. We really have no idea at this point as to the overall situation. No real survey has been done to see whether all patients needs are being dealt with.

Interestingly I have been using Liquid Oxygen which I have found to have some advantages however the flexibility that I had before is lacking.

So what is it that we are after? I feel that patients are individuals and need to have their lives enhanced. They should not find themselves in a battle to be able to live, when their Health is already compromised. I hope that some of the information will be useful. I want people to enjoy their lives on Oxygen as I have been able to do. So when you have read more please give me feedback about your experience of the Oxygen service whether good or bad.

 Send mail to contact@oxywalk.org with questions or comments about this web site.
Last modified: 08/30/07