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Others experience of the service.
When talking generally and listening to different people there are often some
common threads but below are some of the areas of concern. There are inferences
you can draw from this but here are some:-
- A common point in people phoning up was that they did not exist when
phoning up the call centre. This occurred to me on the 22nd November 2006 again
when I tried to order some tubing. I was on the Supervisors system but not the
main Call Centre.
- The tubing blowing off was a common issue although apparently BOC/Vitalair
had solved this with some cylinders. The fact that some patients may have
arthritis or other problems of grip compounds the difficulties of using the
Jubilee Clip. However as someone from Air Products explained, that when there
was a shortage of Oxygen Cylinders should they withdraw them because they are
Faulty and deny everyone Oxygen. My point would be why is a service that is
looking after people who are suffering from a Chronic condition be given
faulty equipment in the first place.
- Some patients had bought equipment such as a battery powered concentrator
because of the lack of ambulatory Oxygen. However once the warranty is up they
will have to pay for maintenance. They have paid out between £2,000 and £4,000
on equipment to give themselves some flexibility, but not every patient can
afford that. Also one of our correspondents has doubts about the effectiveness
when used at over 2 litres.
- We met one man whose Holiday Oxygen for a cruise did not turn up. Luckily
P&O allowed him to use their own on board Oxygen. The lack of confidence of
many patients at the User Group meeting was something that will take the
suppliers a long time to resolve. The common fear of people thinking about
holidays is that if a supplier can not deliver to me at home then how can I
expect to get any on holiday. We have since heard of 2 other people for whom
the same thing happened.
- The fact that Portable Oxygen cylinders without conservers only last a
couple of hours makes them inadequate for use. How can you dare go out when
you have to be home within a short period.
- Sometimes staff try to be helpful when in fact they are making things more
dangerous. Air Products were very aware of this and follow up any incidents
with instructions to all staff. We had heard at the Brompton seminar of
engineers giving advice to parents of young children on Oxygen.
- Electricity cheques not arriving, through we understand that they should
have arrived by now..
- The difficulty people have had in being able to complain or get anything
done. We filled in our own HOOF form and still we had problems. People feel
that they have hit a brick wall. At every problem you have to get the PCT to
intervene.
- No survey or follow up. The British Lung Foundation promised a survey in
the Spring Breathe Easy magazine. There were soundings to Breathe Easy
groups but the problem is that if people were having problems they would have
had difficulty getting to meetings. Really the survey should have been
advertised on the web site and also the Breathing Space magazine. Also by the fragmented nature of the NHS
we have not seen any evidence of any follow up from the Department of Health.
Andy Burnham in answer to a question in Parliament refers to the BLF Survey
but gives no answer as to whether there were any issues or the nature of them.
There has been no official recognition of the problems.
- Another person Mike whom I met whilst in the Brompton recently has had
problems with deliveries and still is finding things difficult.
- A common theme from some patients is the noise from their
Concentrators. My one from Air Products which replaced the BOC/Vitalair one
was quieter. However for the Allied Respiratory patients they got noisier.
- Elderly patients we know have been released from Hospitals to Nursing
Homes needing Oxygen and have waited days for it to arrive.
- It appears that BOC/Vitalair have a good record in Essex and Anglia at the
moment and perhaps that is because of their long standing experience in this
service.
- When you look at Breathing Space you see adverts for Portable
Concentrators and other equipment and we have met quite a few people who have
bought them. This really shows a lack of confidence in what has been offered.
It would be interesting to know how many AirSep Corporation have exported to
the UK over the past year. Recently there was a story about a company doing
well out of Oxygen issues.
- My concentrator was plumbed with Tubing around the house and then 3 ports
from from which my tubing gets attached. From what I have heard if you are
lucky enough to get your concentrator plumbed you may lose chunks from your
wall but from some Allied Patients you just get a concentrator and a single
tube from it which is not very convenient if you have stairs to tackle. This
is extremely poor service.
Please contact me at
Kathy@Oxywalk.org and let me know about your experience. Also it would be
helpful if you let me know your MP as we intend circulating MP's with our
evidence.
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