Transcript - 'Get it on time' Scotland film
We've made a film to support the petition we presented to the
Scottish Parliament as part of our 'Get it
on time' Scotland campaign.
Video - why it's important to get
medication on time
Gary:
Hi I’m Gary Hattie, 45 years old, and I’ve had Parkinson’s
disease for 16 years. Over the last 16 years, I’ve actually learned
how important it is, how essential the drugs are to give me a
decent quality of life with Parkinson’s disease.
But I’ve also seen the effects on people that don’t get their
drugs on time, and the difference that’s made to their quality of
life.
But now you’re going to meet some of my friends and hear about
their experiences.
Margaret and Graeme Kennedy
22
years with Parkinson’s
Margaret:
I’ve been in hospital quite a number of times over the last 2
years. The first time I was taken into hospital, it was with a hip
dislocation. And once the hip had been rectified, and I was back in
bed, I became aware that I hadn’t had my Parkinson’s drugs.
Graeme:
I was told to go home. Therefore, unknown to me, they
confiscated her drugs. And I seriously mean that - her drugs were
confiscated.
Margaret:
It left me feeling I was lying in bed about 3 inches off the
bed. My tremor was very bad.
Graeme:
I couldn’t believe the story that I was told: that after she’d
come out of theatre at 3am, she asked for the Parkinson’s drugs and
they wrote up the record sheet at the end of the bed: "Patient
asked for drugs - refused", signed house officer.
Margaret:
Well I did cheat terribly and got my family to bring in a
selection of the drugs from home, and I taped them to my shoulders
so that when I felt that I needed extra drugs, I could take them,
and I got them that way.
Graeme:
I found out, subsequently, that the medical staff were of the
opinion that lay people are not competent to give Parkinson’s
drugs. They notified that for something like 20 years, she had been
self-medicating.
Margaret:
It wasn’t until the Parkinson's consultant came into the ward
that I was given the drugs that I needed.
Graeme:
And I felt very, very angry on the occasion that the drugs were
withheld, and yet they were drugs prescribed by that hospital’s
Parkinson’s consultant.
Margaret:
However, the last time I was in, I was told right from the start
that I would self-medicate. And that was a completely different
experience.
It was better in that I had the responsibility for my own drugs.
I knew what they were, I knew what I was doing, I knew when I
needed them. And I think I recovered faster through that. I was
certainly much more comfortable.
Graeme:
On her last admission to hospital for a further hip replacement,
the staff were well aware that she was going to self-medicate. They
were very relaxed about this and therefore I was too.
Margaret:
To get your drugs on time, and know that you are in control of
that, you feel like a human being, and not a gibbering idiot.
Gary:
Did you know, that last year two and a half thousand people
with Parkinson’s disease were admitted to hospital? And of that, we
estimate 800 of them didn't get their drugs on time.
Mel and Jean Ballantyne
24 years
with Parkinson’s
Jean:
Mel went into hospital, he had his surgery, it was fine. I got a
phone call and it was Mel. And he said, "are you in that house?"
and I said "yes". "Well I'm in this ward". And then he hung up.
And I went in to visit him that night, and he was totally out of
character, nothing like Mel at all. Everybody that walked past the
bed, he was shouting at them and waving, nothing like him, was it?
Well you don’t remember that bit.
And I went to the staff nurse in the evening and said, "there’s
something not quite right, there’s something different about Mel."
"Oh, Mel’s fine, he’s been getting his medication on
time, there's nothing wrong with him at all".
Well the next day I went in, and what a shock. Mel was asking me
to bring him ear muffs in. "They’re hiding you in these cupboards.
And they’re controlling me, and telling me not to look for you.
They’re playing music and it's putting me off, this music. And I’m
getting out of bed to look for you, because I know you’re
here".
So I phoned the next morning, 6 o'clock in the morning, spoke to
the staff nurse and asked how Mel was.
And she said: "Well Mel says he’s had a hell of a night, and
he’s in tears. And he wants to know where you are. And we're trying
to tell him you’re not here but he says you are and that we’re
hiding you to prove to you that he’s too violent to live with. And
he's trying to climb out of bed and we can’t keep him in and he’s
just had a hip replacement. Please come to the hospital to visit as
soon as you like and stay as long as you like".
So I did. For 5 days. I left home at 10 in the morning, and I
got home at 10 at night.
And these 5 days, I kept saying to Mel, “don’t worry, this
is going to pass, this is going to pass, you’ll be fine, you’ll be
fine.” But I don’t think I believed it myself to be honest.
For 5 tortuous days, I really thought I’d lost Mel - that he'd
gone. And then he said to me one day, "they’re going to shoot me
tomorrow. They’re coming here to shoot me, because I’m too violent
to live with you. So, I won’t be coming home again".
So I went to the staff nurse and I took Mel’s medication list
with me. And I said, "there’s something so wrong, I don’t know what
it is, but this is Mel’s medication list. Are you sure it’s right?"
"Oh!" says she, "I think the timing’s not quite right. The dosage
is right, but the timing's not quite right".
The next day the phone rang and a voice said, "I’m back in the
land of the living". And you just could not believe what that was
like. So that was a big lesson for us - how much difference one wee
tablet can make.
Gary:
So what do we actually want? We don’t see any reason why, when
we go into hospital, we don’t get our drugs on time, all the time,
every time. Help us to make that happen.
Get it on time.
People with Parkinson's need their medication on time -
every time.
Find out more at parkinsons.org.uk/getitontimescotland
Parkinson's UK
Change attitudes. Find a cure. Join us.
0808 800 0303
parkinsons.org.uk
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