-
Ordering cylinders - I have had many difficulties ordering cylinders. It was indicated on occasions that
none were available and when I did order six only two were delivered. I was
requested to reorder the balance, which involved another phone call back to
Allied Respiratory with no guarantee that they would be forthcoming. This
confines me to the house and relying on my concentrator. On one occasion I
was told they had run out of cylinders and when I asked what I was supposed to
do it was indicated to me that I should stay indoors as they were only dealing
with emergency cases! It is important that I receive a regular supply of
cylinders, which enable me to get out and keep as mobile as possible pending
my transplant.
-
Portable cylinders -
The new so-called
portable “light weight” cylinders provided are too heavy to carry for any
length of time. The only method that these can be transported is either on
the back of a wheelchair or on motability scooters. Lighter smaller cylinders
are required like the oxylite that was provided by my hospital, which,
unfortunately have been withdrawn since the new arrangement came into force.
When I queried the portability of the cylinders as I struggled to lift it and
could not possibly carry it round for any length of time I was told quite
abruptly that many 80 year olds were carrying them about on a regular basis.
When I mentioned to the engineer that I was awaiting a double lung transplant
and only weighing 7 stone he replied that he was not interested in my medical
background leaving me feeling very dejected!
-
Conflicting Advice - I have often found
that the advice given from both the switchboard operators and engineers was
often contradictory leaving me unsure of whose advice to follow. On my
concentrator I was told by one Engineer that the level of oxygen was read on
the bottom of the ball and another stating the top, which makes a vast
difference to the amount of oxygen being administered. I queried the length of
time the cylinders would last with a conserver, as I did not wish my supply to
run out whilst away from home. The length of time varied between three and
six hours which did not clarify it to my satisfaction. When trying to confirm
with the switchboard staff the exact delivery date of cylinders they were
unable to be definite in the actual time or day often leaving me in doubt
whether to stay in. On occasions I have waited all day for a delivery and
when making further contact with the switchboard operator I was told that they
were unable to trace any communication from me. Orders were often overlooked
or lost leaving me to make further phone calls.
-
Assessment of Needs -
It was indicated to me by letter that someone would be visiting me to assess
my needs and what oxygen equipment would benefit me. Almost twelve months
later this has still not happened.
-
Concentrator Change Over - I was told that my concentrator with BOC (the previous oxygen supplier) would
be changed but it took several phone calls to get this activated.
-
Nasal Cannula -
I have found that the cannulae supplied with the conserver are kinder to the
skin as the tubing is softer and more comfortable to wear especially when
using oxygen twenty four hours a day. These nasal specs are however difficult
to obtain. Allied Respiratory inform me that they were unable to supply these
items and I would have to contact the company that manufacture them!
-
Staff Not Knowing Products -
Each time I contact Allied Respiratory I get a different member of staff and
there is no continuity. They do not appear to understand the products they
provide. I recently phoned to ask for a conserver for my portable cylinder
which lengthens the time the cylinder can be used and she kept referring to a
concentrator and did I need an engineer to fix it? I then proceeded to explain
to her the difference between a conserver and a concentrator. I was
subsequently transferred to another member of staff only to repeat my request.
They were unsure of the different types of cannulae available and whether they
were supplied with or without tubing.
-
Tube Connections To Portable Cylinder -
I have had great difficulty in connecting and disconnecting the tube to the
cylinder. Often the tube disconnects by itself which then needs immediate
attention.
-
Concentrator Tubing -
The tubing from the concentrator is long over due for renewal. It was found
on my inspection using a bowl of water that some of the swivel joints were
leaking oxygen and I was therefore not receiving the correct dosage. The
engineer was adamant that a leak could not occur but it was proved that this
was the case and the joints were subsequently replaced.
-
Liquid Oxygen - I understand that Liquid Oxygen is a better portable unit and is both
lightweight and can be fitted with a conserver providing long lasting oxygen.
The brochure given to me by Allied Respiratory refers to the liquid oxygen
systems but when I enquired about having it I was told they did not supply it! Having been told by my engineer from
Allied Respiratory a while back that they did not provide liquid oxygen I was surprised to read about it on their website.
I decided to telephone Allied Respiratory and ask them for myself.
I was told that I did not qualify for liquid oxygen as I was only on 2 hours of oxygen a day!
I was completely amazed at this as I have been on oxygen for 24 hours a day since May 06 and
previous to that 14 hours a day. I was told it would be necessary for a letter to be sent to them
from my GP confirming my requirements which was done. This was unfortunately lost by Allied Respiratory
and had to be duplicated by my GP. There was apparent confusion on my requirements as AR thought I was
referring to the oxygen cylinders and not the Liquid Oxygen. It was necessary for my GP to liaise with
the manager of the liquid oxygen department to reiterate my requirements.
It was indicated that someone would call back and let me know the position.
I am still waiting two weeks later.
Lisa appeared on BBC Watchdog and suddenly got Liquid Oxygen which enabled
her to visit the seaside. But after that Lisa had her Transplant and is now at
Home. We are so delighted for her as she is such a lovely person.
