Walking with Oxygen Campaign - Living life with Oxygen

My name is Carol, I live in Surrey.  I was diagnosed with COPD just over 9 years ago and since then have been on oxygen 24 hours a day.  This was after I had been taken  into the A&E Dept of a local hospital and been placed under a general medical team rather than a specialised Respiratory team.  However, after three years, and talking to a community pulmonary nurse, I asked for a transfer to the Chest Clinic.  Never did find out why I was not under their jurisdiction for a start!!!  The doctors and staff  at the clinic have been absolutely lovely, and I have great support from the community pulmonary team.

Originally when discharged, I went home with just the instructions to make sure I had enough oxygen at home to fulfil all needs!! This meant 2 large cylinders every day which in itself was a big storage problem. I did get hold of a portable NHS cylinder (with a one hour life), and on my first outing I did not have the strength to carry it, it was so heavy. My son actually put it in a rucksack and I walked behind like a dog on a lead. (Imagine the stares).

I really thought life as I knew it was at an end. I had to retire from work at 57 due to ill health and my future appeared to be one room and an oxygen cylinder. However, thank God for computers. I decided to log-on and do some surfing. I really had very little knowledge of computing at that time, but gave it a go. I found that I could actually get a concentrator, which is a machine which takes in air and converts it into oxygen; this which would mean goodbye to large bulky cylinders. It had to be obtained on an NHS prescription and I was amazed when my GP knew absolutely nothing about them, but he agreed and the machine was installed. I then discovered the Oxylite system which was an extremely lightweight portable cylinders (4lb). It was completely inconspicuous and delivered oxygen not continuously (which is wasteful) but just each time you breathed in, so a small cylinder would last 6+ hours. Wow! This was fabulous, it gave me a completely new lease of life; restaurants, theatres, cinemas. The downside was I had to pay for the cylinder which although small, cost just under a £1000, but my goodness was it worth it. Since then, I have actually purchased two other portables apart from Oxylyte to cover emergency purposes.

These portables could be refilled from cylinders obtained by prescription from the local chemist on prescription from my GP.

At that time the company who supplied the concentrators were on contract to the NHS and serviced the machine every three months; I had no problems whatsoever. At the end of their contract BOC won the tender and after a few months of teething problems, the service and organisations was first class. I only had cause to ring them three times in the whole 3-years of the contract and they were minor issues.

Now in their wisdom! The Government have now awarded the contract to another Company. However, this time, we now have the same company supplying the concentrators and home oxygen supplies. We now have to rely on inferior portable cylinders; they are heavy, bulky, extremely conspicuous, and although run on the same principle as before, are inferior in many ways. We also have an added problem that the tubing (because of previous problems) now connected to the inlet and outlet vales have jubilee clips wrapped around to make sure they stay on the outlets. By virtue of their use, they have to be tight, but I cannot undue them (again lack of strength), fortunately for me, my Husband is at hand to help. The last time they came away was when we were driving along the Motorway!!! Added to this, although I now use a wheelchair to get about, I can walk a little way, but I cannot carry one of these cylinders, it is just too heavy.

The concentrators they supply are noisier and emit far more heat. Added to this, they are only serviced every six months now. I maintain that because I am on oxygen 24 hours a day, I am using the machine for a much longer time than most people; therefore, my machine should be serviced every three months as before, but I have got absolutely nowhere on this.

I will not go into too much detail of all the issues I have had to report to the Company since their taking over in February, but if I say I now have quite a few letters on file and this is only because phone calls were either lost, ignored or of course, the good old standby: misfiled. It has been chaotic to say the least.

It would appear health and safety is the problem due to issue arising from filling the cylinders at home. However, I have yet to have an answer on how many people have suffered injury or even died whilst attempting to do this.

I must say I am, on the whole, very grateful for the help I get from the Government, but I do think, on this occasion, it has made the wrong decision in awarding this particular contract and certainly more investigation should take place into both the service provided and how the tax payer’s money is being used. However, having read recently about the scrapping of the ‘new’ NHS super efficient Computer which was going to be the answer to all the NHS ills and the resultant loss of allegedly c£20bn, our portable oxygen problems pale into insignificance. It also makes me wonder who is consulted when assessing patients’ needs before awarding contracts.

Please anyone who has had problems, get in touch with Kathy and tell her about them, and please write to your PCT and any other bodies concerning problems you have. We must at least try to do something.

Please contact Kathy 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.

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