Walking with Oxygen Campaign - Living life with Oxygen

Below is the main detail of what was written to various bodies and MP's including these below:-

• 31 MP's who have taken an interest or whose constituents we have been in contact with. We have had some replies from all parties showing concern and have met with Linda Riordan
• The Health Select Committee members of whom we met Dr Richard Taylor and the chair Kevin Barron
• The Chair of the BMA.
• Royal Pharmaceutical Society of Great Britain who have contacted us with some useful feedback.
• National Pharmacy Association.
• Department of Health.
• The King's Fund who have given us some feedback.
• 2 National Publications.
• David Nicholson Chief Executive of the NHS.
• Professor Mike Richards National Cancer Director.
• Doctor Roger Boyle National Director for Heart Disease.
• Also widespread e-mail campaign.

The main document contains:-

1. Outline.

 As an Oxygen User for nearly 8 years I have found the changes in the service to be traumatic and when listening to others very upsetting. Rather than accept an inferior service I decided to fight for something better for all.  

After much research and analyses this Document is meant to show what needs to be done to provide the service that was promised. Rather than being negative it was important that we articulate our own analyses into some positive proposals.   

We feel that this subject strikes at the heart of Private provision. Successive governments have promoted reform with the line that Patients are going to have more choice; however the reality is that we end up with less choice. For those who support Private provision surely the important thing is to ensure that it works and for those against here is some evidence for their cause.  

In February 2006 the Government handed over the operation of Home and Ambulatory Oxygen services to private companies. It was meant to enhance the lives of patients but in reality has had problems. Some of these problems have severely impacted the lives of people that it should have helped. The initial claim was "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". Let us set that as our benchmark of performance.

Under the old system the Doctor prescribed what you needed. Under the new system the Doctor makes a HOOF request based on your needs. However what you get is decided by the Supplier. So although they may have some modern equipment what you get is dependant upon what they have available. So the Patient has no control.

What we have are key proposals which are outlined next followed up by more detail expanding each of them as fully as we can.

2. Key Proposals.

These proposals we believe are necessary in order to restore the confidence to the Patients.

• A regulatory body to run the Oxygen Service for the Department of Health. This body should contain among it’s membership, Oxygen Patients from all regions. Oxygen Users rather than representatives of Patient’s Organisations is a key aspect here (There are sound reasons for this). Evaluation of equipment and service provision. Better National standards. Resolving Issues and ensuring that Patients are best served.
• An Inquiry into the setting up of the service needs to be undertaken, because if the NHS is to have further privatisation of services then lessons must be learned. Also Tax Payers who are happy to put more investment into services deserve to know whether Patients and themselves are getting a quality service for the right money.
• Re-definition of the contract to put control back in Clinicians and Patients hands. The definition of Lightweight Oxygen as being anything less than 3.5kg (including conserver) is hopelessly wrong and needs to be revised.
• More flexibility and availability of provision rather than one size fits all.

The above changes are covered in more detail

2.1 The Oxygen regulator.

I have spoken to many patients with different experiences over the past year and most of my feedback has come in recent months. As with any outsourced operation the Contract becomes King with people able to hide behind words and clauses to avoid their responsibilities. The Oxygen companies are just suppliers and should be following instruction from Clinicians, Patients, PCT’s and the Department of Health.

The problems for Patients frequently and repeatedly, who are by definition “Short of Breath” having to deal with Call Centres and falling foul of Health and Safety are aspects where a regulator should be able to intervene and order companies to Solve problems rather than create them. Typical cases we have come across include.

• On our website Charlotte’s story of moving one mile in the same area and needing to provide Air Products all the paperwork over again in order maintain her service. Her issues were solved by going to the local paper. Solution is that Air Products should have changed the address details and then said to her that when she gets a new GP could she provide an updated form for neatness.
• Also we see Ian who has been concerned about the equipment his Mother is having problems with, that was in the circumstances unsafe. The PCT have hidden behind the contract. Air Products should have been forced to provide equipment that Mary could operate.
• Unsatisfactory information and advice from delivery staff/poorly trained engineers giving unsatisfactory/dangerous advice to Patients.
• We were told that Transfilling of Oxylite cylinders from larger pressurized cylinders was against the Law, this single change tied in with the removal of Pharmacy support has had the biggest impact on my life. We have since discovered that the Oxygen Companies just did not want to re-fill AF cylinders (from which the popular Oxylites were filled) as their equipment was incompatible. So the convenience of the Supplier is paramount. Hence the system is company led rather than Patient focused.
• We have also seen from Cystic Fibrosis Patients (via their Forum) evidence that Oxygen companies are using Health and Safety as an excuse not to provide services. If you live in a flat or have stairs then they will not provide Liquid Oxygen. They should be forced to provide Dewers (Liquid Oxygen Reservoirs) that can either be delivered by two staff or else use Stair Climbers to deliver. All sizes of Dewers are available in the states. When some Patients have reached the point of needing Oxygen then their time may be limited and so to deny them their freedom through Health and Safety is appalling.
• The Call Centres have been at times appalling to deal with. They do not seem to have any understanding of the Patients problems. They are often rude or unhelpful. If a supervisor is asked for, they often do not return your call. Then there is the need to start the whole process over again.
• For many people the ability when they are having a good spell of health to just get up and go is limited by the Holiday Hoof forms and the lack of flexibility. We know of 2 people who should have gone on cruises where Oxygen was not delivered. They were lucky in that they had supplies with them and that the Cruise Company allowed them some use of their own.

 The service is very much a one size fits all operation and needs flexibility developed into it. One of our Team thinks that providing Liquid Oxygen at various filling places would provide more flexibility. Supposedly in the Marketplace of Patient choice and money following the Patient then why can’t a Patient decide how their Portable Oxygen is supplied? We have come across many people who have bought portable concentrators as a result of their lack of confidence in the suppliers. The Tax Payer is still paying those companies for a service that they are not providing effectively. We know that Air Products are trialling these machines. So when they start issuing them all the Patients who have spent £3,300 or more will feel cheated. 

Most of the information provided to Oxygen users has come from the Suppliers. In reality a guide to Living with Oxygen and what you are entitled to should be provided under the regulator.

Above we can see some of the areas of business that the Regulator could cover. The practical side of involving Oxygen patients can be handled by the use of Technology.  No survey apart from a sounding of some Breathe Easy groups has been performed (Despite Andy Burnham claiming that a Survey had been done). A proper survey is required and the results acted upon.

The BBC Watchdog program on the 9^th January 2007 highlighted the deficiencies of one company Allied Respiratory. That it needed the BBC to highlight these issues is another reason why a Regulatory board is essential.

2.2 Inquiry into the service.

 This needs to be a separate entity all on it’s own in order that improvements are not held up by it. There are more questions that need to be asked and so the Inquiry should be an independent one. Key points are:-

• Why did the service go ahead on 1^st February 2006 in a big bang manner with no transition period (The transition period was brought in a couple of days later when it all went wrong).
• When Air Products own cylinders had faults why was the service allowed to go ahead with equipment that was Faulty. (Would an Airline put passengers on New Planes that were still Faulty?- Airbus have delayed the A380 Launch) We understand that only now (13 months on) has one of the problems with the Tubing may have been resolved.
• Blame was attached to Doctors over bad form filling and Air Products will gladly show specimens to people. However when people filled them out correctly they still had problems. I filled out mine and gave it to the Doctor and still had problems.
• Another excuse was not knowing how many people there were but as one Air Products manager said back in February “Well not so much not knowing how many people in total, I think that's reasonably well understood, and bearing in mind we have been providing half of the patients involved with a direct to their home concentrator service, as it's called, there are machines that make oxygen that you plug into the mains, for about 18 years. So we do have a very established business and service providing patients with this service.”
• The rush to get the service running did not take into account the ability of the providers to deliver a service. Richard as a person who was new to Oxygen at the time made the observation “The fact was that the tele-sales staff, recruited to cope with the anticipated extra demands, were untrained and often had not a clue what was being asked of them. Imagine the scenario of a customer, new to oxygen, talking to his supplier who has only a limited understanding about the company's products!”. Also they did not have the equipment in place.
• The minister claims that the service is “Cost Neutral”, However given the cost overrun forecasts seen in Pulse magazine of £37m obviously this needs checking out.
• The survey is needed for analysing the impact the changes had on patients. There are some areas such as the stress and other effects on the well being of Patients that are difficult to quantify but should also be looked into.
• Why was the contract designed to exclude the involvement of Community Pharmacists? The excuse that as less that 50% of Pharmacies provided Oxygen then they were not viable is another Bogus claim. That would still mean that in my local Borough I had 40 outlets to get Oxygen from rather than having to rely on a single Call Centre.
• With Call Centres there is often a high turnover of Staff and this occurred in this case. So the well being of Nervous and quite Ill patients was in the hands of staff with minimum training working under pressure with little understanding of the Product.
• Were PCT’s getting charged on the basis of Oxygen ordered or Oxygen delivered. Also when you look at some of the shortages that individuals suffered it would be worth auditing how much some PCT’s paid out and what kind of a service Patient’s received.  

Oxygen has always had Private provision. However our belief is that in this situation the Control has been Privatised. For allowing independent providers to be involved the issue of control is paramount. The control that the Patient and Doctor had before has been removed. 

2.3 Portable Lightweight Oxygen.

The service provides 2 types of Portable Oxygen. The first is Liquid Oxygen which is a small baby Helios cylinder, which is lightweight but can not be taken away. The second is cylinders that can be taken away which are faulty or too heavy to use.   

Back in October as a slightly built woman with limited Lung Capacity I spoke to around 40 Doctors, Nurses, Physio’s and other Medical Staff at the Brompton about Oxygen Issues. I demonstrated the Freedom 300 which I considered to be too heavy for myself. I was followed by an Air Products representative who described the Freedom 400 at 3.2 kg as a Lightweight cylinder for Paediatric usage. When eventually given Liquid Oxygen I was told that the Helios 300 at 3 lbs 6 oz was for Children and yet when I see pictures from the States one sees it widely used for Adults.  

The weight of current cylinders are too heavy to be carried and so people are stuck indoors or forced into wheelchairs. The weight and comfort is essential for people going out and about. Lungs need to be as healthy as we can we need to be as active as possible so not leading to more infections. Probably for about 9 months Patients have had to suffer this situation and for a long Time we have suffered the knock on effects on our Health.

2.4 Flexibility of Service.

Because we used to collect our own Oxygen, or have it delivered by the Pharmacy at our convenience, many people have found the waiting in for deliveries that last year often never happened extremely frustrating. This meant that when you should be out you were waiting in and freedom was being lost. 

A de-facto rationing system operates in that no matter what your needs are the Oxygen Company will only deliver 4 cylinders at a time. So for many people that meant waiting in every week. For people waiting on Transplants they would always have to have a cylinder for when they got a call and so for people in the Allied Respiratory area they were effectively trapped for weeks. We also know that sometimes people were delivered empty cylinders. This is still occurring in August 2007.  

Another solution is the Total O2 system whereby a Concentrator can re-fill small portable cylinders whilst you are indoors. This is another clever US innovation. 

What is needed then are:-

• Portable Dewers that would enable impromptu travelling. (These are quite common in  the states)
• More outlets for Liquid Oxygen (such as 24 hour Petrol Stations)
• Total 02 system to be available.
• AF Cylinders restored and people able to use Oxylite portables.

A situation needs to be arrived at where Patients have some degree of self sufficiency and not to have to rely on one Oxygen Company for delivery. Ideally there should be other outlets, as backups for the patient.  

With the HOOF form for Holidays and the 3 day delivery time for home orders, we have had the spontaneity taken away from us. Once when I had not been well I was able to book somewhere on a Friday, collect larger cylinders for my Oxylite on a Saturday morning from my local Pharmacy, Fill my Oxylite and be on Holiday in the afternoon. If I needed any more whilst away I could get my GP to write a prescription and I would take it to any pharmacy in the UK where I could pick up more.

Given the general lack of confidence people felt about their own service at home they have generally not been confident about going on Holiday. I myself have arranged Oxygen in Holland and France at short notice with no problem at all and the comments of Glenys who that the service has really cramped people’s style.  “Prior to February, so not knowing how the new system would work, my two sisters (they carry my luggage) and I booked a holiday to France by train in September. On previous holidays I had contacted Air Products to arrange the supply of a concentrator at the Hotel where I would be staying and all went smoothly. I contacted Air Products this year to see if they still offered the service and, if so, how much notice was required. I was told 4-6 weeks!! I telephoned ARARD in France who could not have been more helpful. I was asked to send an email with my details and the next day I received an email confirming that all was arranged together with the name of the local contact. The concentrator was at the hotel when I arrived and I had a lovely holiday. Due to the transition period being extended I was greatly relieved to be able to take my Oxylite. Having to use heavier or extra cylinders could mean future holidays abroad will be out of the question. In these days of technology I do wonder why it takes a British company 4-6 weeks to arrange a supply when it only took me 2 days.”

With Liquid Oxygen I have been lucky enough to have it delivered when plenty of notice has been given but earlier on we were very wary of that happening. Richard a colleague in the campaign is proposing that outlets such as Petrol Stations and major Rail terminals could provide Liquid Oxygen that would allow people to fill up their cylinders for a small fee. He is taking that forward through his own contacts. We need ideas that can enable people to enjoy their lives. The most helpful improvement would be to allow people to use smaller Portable Dewers that would give the flexibility for short breaks. 

Before a Doctor’s prescription enabled you to get Oxygen from Hundred’s of outlets all over the UK. Now you just have the one Call Centre for your region and possibly another if you go on Holiday. Given the problems with the Service, how many people feel confident about going on holiday now? Personally I felt very nervous about it. Because of the regional differences in Service providers would the equipment delivered be suitable for the patients needs? This has been answered by my experience, but did I need the stress when Holidays are meant to be good. 

3 Issues detail.

The main points have been made above and this really is some more detail to expand and inform.

3.1 Concentrators and installation.

The concentrator is a machine that allows us to get a reliable Oxygen source at home. These machines run off the Electricity supply and are usually given to people who need Oxygen most of the Time.

When I first had my Concentrator it was plumbed to a network of Plastic tubing around the house from which there were 3 main points that I can use. I also had a humidifier to prevent the supply being too dry. The Vitalair engineer was able to spend a few hours getting everything right. This meant that my whole house and part of my garden was available to me.

For newer patients under the new service we have seen the following occur.:-

• Patients delivered just a Concentrator and a single tube from it to either a Nasal Cannulae or Mask. No actual installation in many cases takes place. Otherwise all the tubing runs from up over handrails downstairs which is very dangerous (Health and Safety interestingly for the Patient here is ignored)
• Patients told that they can not have Humidifiers as they don’t work if the flow is only 2 litres (I have one), this is not true. Humidifiers stop the Nasal passages drying out.
• When ordering new tubing to be posted, I have been told that for Health and Safety reasons I need an engineer to fit it despite doing this for 8 years. It is as simple as putting a straw in a cup.
• With the Change over some people have had quiet Concentrators replaced by much noisier machines.
• When plumbing has taken place I have learned that chunks had been knocked out of a wall of one Patient.
• It would seem that Concentrators are no longer plumbed in professionally. Is this because the time allocated has been cut or are trained engineers not available.
• Carole’s experience of Concentrator service is “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.”

Generally we can see a difference in the standards that occurred before. Though many people who did not have Concentrators should now have them which is an advantage for them as at least they do not have to worry about Cylinder delivery or non-delivery.  

3.2 Call Centres.

We know that Call Centres are supposed to allow a one stop shop where all your needs can be answered. However we are used to dealing with qualified people such as Pharmacists and Medical Staff. The advice we get comes from Years of training and high professional standards. The experience with the call centres is a common experience for us all. A common problem is when people who do not understand what you are asking tell you anything to get you off the line. This is an extremely frustrating and wearying situation and at time could lead to dangerous situations. For some of the people whom we have been in contact with, their experience of being on Oxygen just relates to the past year. Issues are typically where you require something that is slightly off the script that they can deal with.

• When Richard wanted to go on a Touring holiday and wanted extra cylinders, he had to explain several times that he was Touring and therefore was not staying in a fixed place.
• I myself have been told that I do not exist several times and have had people deny that I have Air Products equipment when I clearly do. It is as if they are calling you a liar??
• Conflicting and poor advice about equipment from both Call Centre staff and Delivery Staff/Technicians, has been worrying. Air Products admitted as much themselves at their user day and were trying to ensure training was better.
• The experiences of Lisa with Allied Respiratory and also her testimony show the dangers of the poor quality of service.

3.3 Exercise and Oxygen.

exercise important for the Healthy, for many people on Oxygen there is a daily challenge to keep their airways as clear as possible. Patients use Oxygen for many different reasons but also this means that the Oxygen needs to be lightweight. For my own condition with regular exercise I can keep well and clear. For people awaiting Transplants they need to keep their body as fit as possible to undergo such a gruelling operation. I have tried the various cylinders provided and the “Freedom” range kept me indoors. People have been asked to get their Mum’s to carry the heavy cylinders. Others have found that a Wheelchair is the only option. The lighter weight Helios Liquid Oxygen cylinder has enabled me to get out and about again.

4 Summary

This paper gives a picture of the main issues and perhaps some possible solutions to those issues to help to safeguard patients. We need someone or a body to take these on board. The new service was meant to improve our lives, it has possibly for some done so and this is good. But for hundreds and maybe thousands of us the service has deteriorated. However the inflexibility of the service, the misleading information and the lack of helpfulness combined with appalling ignorance of Call Centre staff is frightening.  

The quality of cylinders available for people not on Liquid Oxygen is very poor with faulty tubing and heaviness. Before the changes we dealt with Healthcare Professionals and Community Pharmacists supporting us. This expertise does not exist within these companies. What independence and control we had to maintain a good flexible lifestyle has been taken away. I now have to hire out a wheelchair if I am going away at short notice because I have no where to fill my Liquid Oxygen and I cannot carry the Freedom 300 and 400 cylinders. Therefore I do not get any physical benefit. This is progress they say, putting people in wheelchairs.

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Last modified: 08/30/07