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well my feelings now about the work of the unit are that they're invaluable,
that I don't actually see a way forward for medicine without
research like this, and that
i feel quite frutrated that actually
it was left to a small poster on the chemist wall that actually was the
only way that I heard about it.
I'd volunteered to be on the patient panel because I feel very now that
if i can do anything to promote
patient involvement; more people becoming involved in research
then it has to be a very positive way forward
My name's Anne Godfrey
my health condition and has been asthma
diagnosed
approximately ten years ago
it has been a constant
chronic condition
that has varied from mild to moderate asthma
as a regular drug user, I was picking up a prescription from the
chemist
and just behind the door was a very small poster
with a request that asthma patients might like to consider being part of the
trial, so it was my own really initiative that drove me to take
the number and to telephone
and to get involved
my role is a patient and the things that I was expected to do you were very
clearly laid out
and they were explained to me, that would be several visits over a period of
four months
and that at each visit, I would be using specific pieces of equipment to
test my lung capacity
I would be providing providing samples of blood and sputum
i would also be asked to lower my drug dosage midway through the
trials and then to monitor my own
state of health at home
all along the way there was always the back-up that i could actually
telephone someone
and seek advice if i was little worried the benefits that I've gained
by being part of this trial are so great.
I've touched on it before, but
physically there has been a massive change in that
by cutting down the drug a lot of the symptoms that i was experiencing were
actually created by overdosing on steriods rather than needing more
if someone was
thinking about
becoming involved in the trial
i would so said definitely say please, please do
I would very much
urge them to if they felt there could be any benefit that might
come large or small from from just
I suppose having a more thorough
uh.. check
around whatever it is that that is the problem for them.
I think also, without them being involved,
how can we advance medicine? So I think there's a wider
hopefully public
role to play
in actually being part of something that that could both help them and others
I think probably
my last hope is that they might
be a stronger link between the research team and general practitioners
and that any input that patients could make from being part of the research may
go towards making that stronger link
and that from that, more people would become involved
mentally it has turned me round, because at this
point in my life, it's good to know that my lung capacity is actually better than
a normal person's when i really
was beginning to believe that it
was sinking
and so generally, it's just been the best thing that's happened to me in the
last year. And that's not an exaggeration, either.