Walking with Oxygen Campaign - Living life with Oxygen

From what we have seen we have been concerned about people who have been suffering in silence without anyone to fight for them. For Pensioners like Mary it is good when family and friends can rally around. However this is not always possible. We only know about Mary because her son got in touch with us. We know from the Air Products User Group meeting in Docklands that people had been having difficulty opening and closing cylinders. They were issuing a gadget to get around this. However this means that not only is the Freedom 300 too heavy for many people but also with tubing blowing off and difficulty in turning on and off looks less impressive than in the brochure. Anyway below is the story that her son sent us.

For several years now my mother Mary 89 years old has been using oxygen supplied by her local pharmacist. Replenishment was simple, mother phoned the Pharmacist who would deliver the same evening on his way home. He would swap the mask over and make sure everything was working. He supplied a large cylinder for use in her house and a smaller portable one for travelling. Both were from BOC. Whilst not perfect the valve gear was easy to use with 3 positions; off, medium and high. Mother uses the medium setting.

Last June Air Products plc turns up with replacement kit leaving 2 large and 2 small cylinders. The delivery driver left hand written instructions on how to use it telling mother that it was dead easy to use as there were many people using it with no problem. No attempt was made to ensure she could actually use the kit provided. If fact she could not. It was impossible for her to operate the valve gear as it was far too stiff. When I visited here several days later I discovered she had actually managed to open the valves on 2 of the cylinders but not close them. Fortunately there were no naked flames about! It is worthy of note that my mother does not have a problem with standard cooker or water taps.

She was without oxygen for 3 days. I managed to restore the pharmacy service but the PCT insisted that was a temporary arrangement.

The PCT’s solution to the stiff valve problem was to install a concentrator. I guess this was throwing money at the problem, I wonder as a tax payer can I afford it. On delivery the Air Product driver insisted he left a large cylinder as a backup in the event of power failure. The fact that mother could not use it (the stiff knob again) or that she was unable to transfer the mask didn’t figure with him. The Pharmacist still supplies the portable cylinder.

So here we have a so called improvement in the service (the Minister of State for the Department of Health’s words) apart from; a less than helpful supplier, a valve that was easy to turn replaced with one that is too stiff to use and if the stiffness could be overcome it has many confusing flow settings. Properly designed equipment would have a simple on-off control. The flow rate should be set by the delivery driver as is done when a concentrator is delivered. Clearly this equipment has been designed with profitability in mind not usability or user satisfaction. Bundling the flow control with the on-off function saved about 50p per cylinder.

To date I have exchanged 33 Emails, My MP has written 6 letters to Air Products, the PCT and DOH. These generated 9 replies, mostly evasive or responding to questions not asked.

Here is an abstract from some of them:

In response to my MP’s letter about the stiff valve gear the General Manager at Air Products goes on for a page an a half on about delivery problems. No mention about the stiff valve problem.

From the Secretary of State to my MP. “I am sorry that Mr Stone believes that the service users were not involved in the evaluation of tenders. We were careful to ensure that healthcare professionals and patient representatives were involved as these are the primary service users”. Notice the careful wording, service users were not involved. Also in the same letter; “We have noted what Mr Stone has to say about ‘poor grip’ and can assure him that we take this kind of feedback seriously”. That was last August. To date no action.

Email from Clinical Nurse Adviser, West Midlands, Air Products; “Please note that there are over 50,000 patients currently registered with Air Products and the vast majority are using our cylinders with ease.” Would not be drawn on how many the minority represented.

What I have clearly discovered is that the right hand does not know what the left is doing.

No one is taking complaints seriously.

The whole operation has been badly specified and planned.

If in doubt intimidate the user.

I guess there are many old folk out there in the same situation who are also being ignored and intimidated. The battle continues.

A further update is that the Chief Executive of the local PCT has informed Mr Stone that either they should accept the Air Products equipment or provide their own at their own expense. So something that worked for Mary before is no longer available. Has this broken the promise? "Your new supplier will be able to give you more modern equipment that is better suited to your needs and which may improve your quality of life". However the truth is that many people have bought their own equipment through lack of confidence in the gear that is provided. 

From our campaign point of view this represents very well the issues faced, where a one size fits most service is unable to cope with the individual. Clearly the PCT could have been more helpful as they were for us, but with PCT's due for re-organisation who will be there to keep tabs on the suppliers? Air Products are using the old BOC cylinders in some parts to our knowledge. The best way to solve some people's problems would be to give them a cylinder that they are safe and comfortable with. If there was a regulator then companies would be forced to supply the correct equipment in these cases.

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Last modified: 08/30/07