|
Below listed are some of my main issues with the changes that have happened
and their impact. My own experiences have been relayed in plenty of detail to
the Primary Care Trust, Air Products and the Department of Health. The summary
impressions at this time relate to my impression of my own experience. As a
result I have more recently had a response from Air Products but have yet to get
a proper response from the Department of Health.
- Call Centre communications have been poor with orders lost, no tracking of
orders. Staff training non-existent given that staff have told me that I
should wear my concentrator when going out!!. I have recently been told by Air
Products that training was underway now. They are sending new staff out with
Engineers in order that they can meet patients and get to understand what we
are all about.
- Freedom 300 cylinder heavier than my Oxylite. Much of the 300 weight is in
the valve/re-filling part rather than the actual cylinder which is probably
quite light. Also tubing keeps blowing off making it hazardous if you are a
driver. The bag supplied is much too large for the 300 and so made it
uncomfortable to carry. So the need a new bag and also to kill the weight in
the filling part of the cylinder.
- Was given Freedom 400 cylinders as there were no 300's. But these are not
designed for carrying as later informed by Air Products.
- My experience of deliveries was poor to non-existent. In emergencies this
could be dangerous. More recently amongst Air Products users that I know we
have seen a doubling of their Engineers in our area and a substantial
improvement.
- There is supposed to be a comprehensive Holiday support but if we cannot
be supplied at home then what chance for Holiday Oxygen. Given the experience
of 2006 people at the Air Products User Group were still nervous about this.
- Before we could either get delivered or just collect our AF cylinders from
our local pharmacy (one of over 40 in the borough). Now I have to wait in for
days waiting for a delivery when twice nothing was delivered, despite several
calls and missed delivery days. This is very
restricting for ambulatory Oxygen patients who should be out and about.
- Before I could organise a Holiday at short notice. Just pick up the Oxygen
I need and load the Concentrator in the car and go. If I am feeling well we
can just go. As with anyone with a delicate balance sometimes you do not have
the confidence to book something up in advance. You have to see whether you
will be fit enough to enjoy it.
- To sum up I want real ambulatory Oxygen with flexibility that allows
me to lead a full and active life. It is not what the supplying company think
they have to offer but what my Consultant and Doctors say I need.
- I have been trying Liquid Oxygen which has a great range but is still not
suitable for the ability to go away for ad hoc breaks such as weekends.
The main issues about the changes really relate to why a system was not
improved but was just replaced. Our PR blurb style reply from the Department of
Health did not answer my concerns but in fact just made me more annoyed.
- Community Pharmacists were not part of the new system but actually
bailed the Department of Health and us Patients out when it all went wrong in
February. These are people with knowledge who in partnership with the GP's
provide a highly skilled service. The Department of Health said that
Pharmacists could have bid for the new contract but in essence that is a bogus
claim as they are just local providers.
- The claim that as nothing had changed in so many years then it needed to
change was also an odd claim by the Department of Health.
- Because less than 55% of Pharmacists provided Oxygen then that was another
reason for change. However 1 in 2 pharmacists provided Oxygen then this is still a magnificent network
around the country.
- A claim in the information prior to the changes was that "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".
For me I feel that I was not after an improvement but at least a maintenance
of my quality of life.
When you read these statements to justify changes you can feel that there is
really something quite wrong. I have always felt in control of my life. Being
organised to order and pick up my own Oxygen as and when required. This has
worked well for seven years. That responsibility was mine. Now all of that
control and responsibility has been taken away from me. I am now left with a
single outlet whom I have lost all confidence in. The changes so far have not
enhanced my lifestyle. This is why I have complained to many people.
There is a question that under the proposed Independent Living Bill would they
fall foul of that. Living with Lung problems makes you treasure your life and
appreciate the value of things. There are people you meet in Hospital who have a
strong love of life. So what do you think. Please go to my feedback page to let
me know more about your experience.
|