Technical Apects

When people get together to devise something to help patients, who do they forget to involve? Yes you've guessed it the patients. There is one thing that could resurrect the situation and that is to create a regulatory board for the Home Oxygen Service called say OFFOX which would handle any issues and move the situation forward. However this would follow the practise in the states and have a significant proportion of Oxygen patients involved. We would need cover in case of illness but issues such as poor equipment, or heavy cylinders would not have been such a problem for everyone, the companies included.

Though I had had a couple of glitches in my use of Liquid Oxygen at least I have been very active since using it. In reality when I have used a Freedom 300 on a short break, I was reduced to a wheelchair as I could not carry it. So below you can see the relative sizes.

The 2 Freedom cylinders including the heavy 400.	The Oxylite next to the Freedom 300	The Helios Lightweight Liquid Oxygen next to the Freedom 300.

As you can see you soon get an advantage in ease of use with the Helios Liquid Oxygen. In the US this is widely used amongst Adults and has been used even on a cycle tour. Another great thing with the Liquid Oxygen is that you can get out and about for longer periods and that a Dewer delivered every couple of weeks will allow so much freedom. So ask for it and if need be get your PCT to asks for it. The wider take up of Liquid Oxygen will bring us in line with other countries and then we may get more flexibility in holiday and short break provision. However when people ask for Liquid Oxygen they get told the following:-

If you live in a flat or a House with any step access, Allied Respiratory will not deliver for Health and Safety reasons. What about the Patient?? Why can't they use stairwalkers or lighter equipment.
If you do not work they will not give you a longer duration Cylinder for LOX.

So if we are to get a better service, we need to see the doubling of Liquid Oxygen usage in the near future.

Other companies cylinders are heavier than the Freedom 300 (The Luxfer cylinders used by Allied Respiratory for example) and so for many British Oxygen users the concept of a lightweight option has not happened.

Portable Concentrators.

When you read Breathing Space (British Lung Foundation) you see plenty of coverage of Oxygen, but sadly only in the advertisement features. One interesting product is the Portable concentrator . This battery powered device did cost around the £3,200 mark but no doubt will come down in time. I have seen several myself and one of the reasons or their popularity is the problems and weight of the Oxygen cylinders. So in effect this underlines the deficiencies of the Home Oxygen Service. However one point to note is that if your flow needs are greater than 2 litres then you may not get the puff you need. Also people have commented on how the Battery life appears to be diminishing quite rapidly. But for Flying they appear to be offering quite a good alternative for many people. The feedback we have had includes the following:-

At larger flow rates the Portable Concentrator does not give enough Puff.
Poor service/resolution of issues by Supplier. One user has been accused of over breathing resulting in the machine not working. But as Patients are buying these themselves then where is the expert

Instead of just having the large dewer and then finding that going away for a weekend involves going back to heavier bottles , It would be a good idea to supply a portable reservoir that could be taken in a car. This would perhaps allow the patient to use the Liquid Oxygen portable for up to a week away. Maybe re-filling at a Call and Collect depot or at your local filling station. This was also discussed and they are aware of these but are not part of the contract. So this should be something to be pushed for.

If you use a Pulse Oximeter then you can keep an eye on your SATs. What if you had one the size of an MP3 player with a clip to your ear. This device would know what your expected levels should be and so would then operate a conserving device attached to your Cylinder. Sounds quite fantastic but there is a Research Project that we support that could bring about such a device. We will keep everyone informed of the progress on this. Advantages are:-

This project has already trialled the idea and has had some excellent results so far.

We can all complain about what is going on but no doubt many of us have thought about improvements that could help solve the situation. Air Products staff are under incredible pressure and everyone appears to be trying to roll out more of the same. However they have had over a year now . So what can be done? The equipment on offer is an improvement on the standard NHS fare, but there is quite an array of equipment available. I was lucky enough to have an Oxylite from my Hospital. Some really clever innovations from the USA and although the costs of some may be quite high at the moment, long term increased use in the USA will drive down costs and make them a feasible option. On the 1st November we went to an Air Products User Group day and aired the ideas below as well as various issues. The openness of Ian Buckle the operations manager was most welcome and in fact we are awaiting some information to continue our enquiries. But alas 12 months later we have had no reply. So is there any real progress on matters that are crucial to patients. We would like to know.

One big problem for Air Products appears to be having enough Freedom 300's to satisfy demand. However the fact is that there are people with heavy usage like myself seems to be part of the problem in that Freedom 300's are in very short supply. My answer would be to supply people with cylinders like the Oxylite I use that can be re-filled from AF Cylinders by the patient/carer. It would simplify the situation. The table below shows the comparison.

Issue	Freedom 300	Oxylite
Weight	slightly heavier but much of the weight is in the filling mechanism	Slightly lighter as filling gadget is not attached when in use only when filling.
Number of cylinders	Would need in Circulation approximately 6 per week plus those being filled.	Just one Oxylite cylinder but perhaps one AF cylinder per week.
Range	At 2 litres with conserver about 6-7 hours	At 2 litres with conserver about 6 hours
Fixed Cost	More bottles at a lower cost but conserver the same.	One bottle plus the AF cylinders but conserver the same.
Ease of use	Problems with tubing blowing off would continue as the tubing has to be removed many times when changing cylinders.	Patient/Carer has to re-fill.
Safety	Tubing blowing off makes cylinder hazardous for driving. Stiffness of handles difficult for arthritic patients.	Larger AF cylinders, However Hospital gave training for usage and safety.
Administration	More visits and more filling required by Air Products staff.	A single visit with 4 larger cylinders say one per month. approximately £40 per month.
Flexibility on holiday	Have to arrange HOOF well in advance	Can either take AF cylinders or arrange to pick up when away. A very standard cylinder in all of the UK
Overhead costs	More activity by Air products so much higher.	Much lower as less fillings and visits.

The irrefutable logic of the above is quite compelling and the cost and administrative options are obvious. Obviously the Oxylite has been around since the late 90's but is a fabulous piece of kit as it lends itself to a flexible lifestyle.

We have been under the impression of the following reasons for the discontinuation of the Oxylite.

The real issue for the companies is that the contract and rules prohibit transfilling of cylinders. So in effect the companies would not want to take the responsibility for patients who were reckless in their use of Oxylites. We are aware that the Aluminium can overheat but our training emphasised the need to fill slowly when the cylinder became warm.

But is it more a case that the AF 1360 Cylinder did not fit in with the new Suppliers own technical needs. After much research we could not find any evidence of safety issues.

We are going to pursue this matter with the MHRA but as for the moment we will not be able to get the AF re-fills from pharmacies from 17th November anyway.

When speaking to Ian Buckle of Air Products we explained that for many people the lightweight Portable Oxygen really has to be lightweight. The real issue with the Freedom 300 etc. is that the filling part is just so heavy and so does not qualify as Lightweight for many people. This as well as the tubing issue are things that really need addressing. The suppliers need to kill the weight in that part of the cylinder as the actual bottle part is so light.

From what I understand Air Products has a Network of local depots. There is a possibility that if the IT systems were able enough to handle it that people could phone an Order and perhaps collect it themselves at a depot the next day, or get someone to pick up supplies for them. Of course it would need the stock control to be just right but this could be a useful thing if people were going to go on holiday. They could also pick up further supplies whilst on holiday in different depots. However Air Products are to introduce the ability to select a delivery date and once that is working will implement AM/PM delivery slots.

One of the key complaints was about the delivery times and days. One change they are to roll out first one one area then nationally is to allow customers to choose their days for delivery. The IT and other changes should allow this. Once this is in place they intend to allow the choice of AM or PM deliveries.

The Call Centre was incredibly poor but now all staff actually go out with an engineer as part of their training and also they invite patients in to explain to the staff about living with Oxygen. However on my next contacts with the Call Centre I found that I did not exist!!