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Report transcript in: Value of Copro - Mark and his experiences coproducing with Parkinsons UK
Please Report the Errrors?
this meeting is being recorded.
OK,
Brilliant. So, um hi, Mark.
Um, I'm just going to invite you to introduce yourself, um,
briefly and then talk to me about your experience of coproduction.
Yeah. Hi. My name is Mark Hutchinson. Um, I'm Parkinson's, um,
suffer
to be called. I was diagnosed in September 2013,
and, um,
although a surprise at the time and a bit of a shock,
I wouldn't say it was devastating at
that particular point because you don't actually feel
at all and, Well, really, you have some
quirks in your
movements or
habits or whatever, uh, which gradually sort of decrease and increase over time.
Um,
I live with my wife.
We do a little bit of property developing, and I manage to stay active
pretty well.
Uh, normally, um, although fatigue is a big factor in one of my symptoms,
Um,
almost from day one, I
was quite keen to get involved with various research
programmes and, um,
research initiatives
and most recently, coproduction in such as, um,
such items such as better conversations, which is aimed at people
who are struggling with Parkinson's and struggling to communicate
principally with their immediate partner.
Um,
also, uh, about a year ago, I was involved in the co-production of Park,
which is the Parkinson's research conference.
Uh, with a team of about nine people,
the better conversations was a team of, uh I hope we don't miss anybody out here.
I think there were five of us all together,
um, each with an interest in various aspects of communication.
And
one of my principal
reasons for wanting to join in with that particular piece of research,
uh, was the isolation that you can feel if you can't communicate
clearly,
uh, with other people, be it your own partner or people in the group.
Uh, and it kind of leads us to quite a bit of loneliness and
probably
depression too closely followed behind.
Um,
as with all of my experiences,
the better communications was led by somebody very, very helpful and very skilled.
Philippa Clay,
who brought the team together with, um,
very clear advice, very clear guidelines about what might be expected
and also making it clear that
there's no right and wrong answers to any of these things.
It's our experiences that are are being
listened to
and valued. I certainly felt like they were being valued.
Um,
we met monthly for about five or six months. If I recall correctly,
uh, building up to putting together the final package for the researchers to
formulate their programme and put it into action
while it didn't mean that we were actually participating as,
um,
guinea pigs, so to speak for this programme,
the insight that it gives you into what's going on, uh was fascinating
and also very helpful, too. Uh, so from a purely selfish point of view,
Um,
I think these collaborations are very good therapy
for anybody with Parkinson's because you feel like you're
doing something at least because for the time being,
while there isn't a cure or
therapy that puts things absolutely back on the straight and narrow,
you have to find your
find your help and assistance from the experts and find
it within yourself as well to make yourself feel like
it's worth going on,
which I very much do feel that way.
Um,
the
the Internet has been extremely useful with this.
I don't believe that the collaboration could
have been nearly as successful without it,
um, so
lockdown
has its uses in a way
Uh, certainly. With the park on conference,
Um,
we had, uh, can candidates Should I call them from as far as the North?
Very north tip of Scotland.
Gloucestershire?
Um
uh, the Midlands. Uh, we're in Herefordshire.
Uh,
but we could also come together in one place very, very easily,
which just wouldn't have happened.
So
I would foresee that
that will be the format i e the internet from now on,
simply because of the ease of getting to the people that are really
willing and,
um, wanting to be,
uh, helpful with their input.
Mhm.
So
So what?
What
was
involved in the, um, park on?
Then what was the breadth of, um, people, obviously yourself and other people,
um, who are living with Parkinson's?
Um,
we
had,
uh, clinicians. We had lots of volunteers such as me.
Well, there were I think there were nine of us, if I remember rightly
then
the full time staff at Parkinson's. UK, um, Liz in particular,
uh, who sort of drove the programme? Um,
we didn't get a sense of it while we were kind of participating in it,
but I think towards the end towards the D Day, so to speak.
It got pretty fraught and frantic back in Parkinson's UK office.
Um,
and indeed, they came to us,
uh, for sort of picking, brain picking.
Um, advice.
Uh, I hesitate to say advice because we can only sort of share our experiences.
We haven't got expertise, but
actually, somebody put it very well and said,
You're the experts in having Parkinson's, which is
true. It sort of makes you feel valued,
um, so you can express with, um, some authenticity.
Uh, what? Your experience, what your feelings of it is
the
the breadth of knowledge and input for park on was quite huge. Really?
Because we had dieticians. We had, um, speech therapists.
We had neurologists, um, surgeons, um, research leaders,
um,
Parkinson's, uh, my neurologist is based in John Radcliffe Hospital in
Oxford
and the, uh, Parkinson's centre for Disease.
I think I've got that right
in. John Radcliffe is led by Michelle who who
has got a huge depth of knowledge and research,
and she was very much a part of,
um,
personally speaking, I found some of the
more fringe
aspects. Very interesting
things. So
for instance
Oh, yeah,
uh,
explaining about how diet can
dramatically affect your symptoms. So
the
research
into finding a cure, Um,
I forget the name of one of the last speakers.
But he was a very expressive, very entertaining,
um, neurologist
who was full of life and enthusiasm for what's going on and
was actually a very suitable round up to the whole,
um experience because he managed to leave everybody on high.
Um,
there was a little bit of controversy as well.
There was a correspondent from the United States that was, um,
asking questions and actually
wondering, were we going the right way with this research? Um, which
I think brought a few people
short. But actually,
you know, you could ask these questions. Stir the debate up
before you find the right answers.
Um,
the
better conversations.
Uh, I think, as I said was, um, led for our part by Philippa Clay who, um,
brought us all together
with varying degrees of interest, as I already said.
And,
um,
the end result
was very satisfying because, uh, we talked a lot about how the,
um presentation to potential participants should look,
and
I think we all stress that it should be very straightforward as a Web page as a website
easy to navigate,
not because people participating needed the help of something easy,
but simply because websites generally
can get very complicated.
And you can be searching around the screen for information
and losing the interest in what the actual content is.
Um, but I believe that what they've managed to find come up with in the end,
uh, is straightforward, easy and very helpful. And
hopefully we'll put people on the right track to,
um communicating better as it's as its name suggests.
So
do you think, um,
your involvement and the involvement of other people, um,
who have Parkinson's has made a difference
to, I guess, to those other people involved, um, and to the end, the end resort,
I guess the event itself and the better conversations
Do you have been different?
I think, Yes.
I think getting the, um, getting the opinion of people like us on the front line,
so to speak,
um
can only be a good thing, because,
um,
I haven't got anything parallels in the business world. I mean,
I'm actually a furniture maker by trade, and, um,
I spent a lot of my life selling expensive furniture to people.
Um,
but the parallel there is simply that, um,
without knowing what your end result is, what your target is,
Uh, it's very difficult to put something together.
Um,
and
I mean, we are the we are the target at the end of the
OK, so to speak.
Um, so
guessing at what we might like
was not nearly as good as actually asking somebody like us.
Is this hitting the Is this hitting the spot?
Um,
apart from.
And better conversations are quite often, um,
read through research papers and, um,
propositions for people looking for
plain English. Basically,
um,
which I find quite interesting.
I'm a bit of a nerd when it comes to grammar and spelling and punctuation.
And simply putting that right in a document certainly makes sense.
It's quite rewarding,
but also,
I think it's important to be read by somebody who really doesn't understand it
deeply and thoroughly,
so that they can say I don't understand it. You know, you can pick up parts of the
text
and
say, Well, somebody like me doesn't get it.
Um,
that possibly is only of limited use because of the system, So
I think it's probably important there to do them
infrequently and make sure you're still an amateur,
so to speak.
Yeah.
So there's a risk that you might become
over professionalised or too professionalised at this.
Exactly.
Yeah.
Yeah, that that that makes sense.
Um, I've had had a few similar conversations, like like that.
Interesting that you said you were really keen to be involved
right from day one of knowing that you had Parkinson's.
What? What do you think?
Why,
why? Why was that important to you?
I think to sort of get on the bandwagon, so to speak.
Um I mean, that initial shock, that surprise when he sort of diagnosed, I mean,
um,
I be before diagnosed before I even thought it might be Parkinson's.
The symptoms were revealing themselves by,
by way, very simple things, very straightforward things, but
that kept recurring. That wouldn't go away.
So I had neck and shoulder pain.
And
when it came to having a shower and getting out and drying your hair with a towel,
for instance, my left arm, significant things in the red, right,
but actually building up to sort of thinking Well, hang on, it's not getting better.
I need to sort this out.
And
when I went to see the neurologist first time,
I hadn't really a clue that I might be
getting a diagnosis of Parkinson's within the hour.
And,
um, when it came,
you sort of think, Oh, bloody hell, Where did that come from?
And it takes.
I'm sure it must take a different length of time for
everybody to absorb it and come to terms with it.
Uh, maybe some don't completely come to terms with it.
Um,
they
for me.
I think it took a few weeks and I thought,
How can I can't fight this any other way than joining in
and being part of research?
It's not going to make any difference. It's not gonna make it worse.
Uh,
and hopefully mentally,
it'll make it better because I can get the fulfilment out of it.
Um,
I keep mentioning that sort of fulfilment. It sounds very selfish, but actually,
So what
if it's helpful
and he's doing you good too.
Um,
get on with it.
Do you think
Do you think part of that fulfilment is to
do with actually understanding and being able to be
alongside people who you would perceive to have more knowledge and experience.
Um, but it's a learning thing, isn't it? I suppose it's something
you've been able to learn about.
We were doing so well.
Uh,
I can't remember exactly three or four or five years
perhaps to come out to friends that I had Parkinson's,
because initially,
um,
the symptoms were so
mild and difficult to see for anybody else. I thought, Well,
I don't really want to tell
anybody
how to get on with things and, um
just live a normal life.
Uh, the time came eventually and funny enough.
I had it kept limping, kept stumbling a little bit, and people kept saying,
What's wrong with your leg?
And I thought, I'm not going to start lying to people,
but I I'll come out with it and say,
You know,
uh, this is this is me. This is who this is, what the reason for this is.
And I actually wrote a bit of a round robbing
letter and send it out to friends by email,
and
their response was great. I mean, a
lot of black humour came flying back at me,
so
I mean, being a furniture maker,
the one wit came back and said, Oh, you'll be making shake of furniture out then,
will you?
And somebody else who loves a drink of the evening came back and said, Well,
you can shake the cocktails for us.
Um,
slightly cliched,
um, vision of what is Parkinson's?
Um,
And on that point, actually, um,
being involved with collaborations gives you more knowledge
and therefore enables you actually to sort of very
politely and very kindly put people right as to
what it is
and how it's different from anybody else's Parkinson's.
Um,
them say saying, being that, you know,
you meet one person with Parkinson's and you've met one person with Parkinson's,
which is very, very true.
Mhm.
Yeah. Thank you.
And what do you think?
What do you think the impact of? Um, you know what? What you've done, what?
The involvement in the research, what you've done
and the conversation stuff the park on
has been for other people.
Um,
with with Parkinson's,
um, as part of the teams or people in general, Do you think
both Either
I think the people in the teams, um, would actually,
um, say how much they sort of We're sorry that the
different programmes come to an end because you
get to know people really quite well,
even though it's on the Internet.
Um,
and
you you can see clearly that they've all got different angles on,
and they've all got different
inputs
to offer.
Um,
and
I think there's something quite humbling about having Parkinson's.
You know, um, you can be a
math professor or you can be a furniture maker or you can be anything you like
And then the great leveller comes along and says,
Hey, you like you've all got Parkinson's. So,
you know,
think on.
Um,
as far as
other people are concerned, I haven't come across yet
in
collaborations, I would say,
Don't hold back. If you feel it's going to
help you and help other people
do, get on with it and you'll get
you'll get a lot out of it.
Hm?
Do you think people do you think it would help
people to know that this is something that they could?
There are opportunities for them to get involved with
things like this from the point of diagnosis.
Yes, definitely. Uh, and it seems actually to be a great
there seems to be a great variation in what information
and what advice people are given on day one,
I think. Excuse me. I think I was very lucky living in Oxfordshire at the time.
Uh so therefore, my contact was at John Radcliffe Hospital, which is,
well, well renowned, isn't it?
Um, so
that was a really good start.
I don't think anybody gets I don't think everybody
gets quite that sort of same sort of start.
And, um,
they can be left sort of scratching around a little bit or feeling quite lost.
Um,
the
the information I was given at the time
um,
it was quite very.
You can pick and choose, and, um, do what you feel you've got most to offer them.
Um,
they are
from a family of
very good mumblers. So when the better conversations, one popped up.
I thought I think I've got something to offer here.
Um, I missed a bit of that mark because it froze again.
Conversations? Yeah, Yeah. No, no, it's fine. Sometimes it's fine.
I can hear you, but I can't see you.
So if there's anything you think I've missed, please restate it.
Um
well, you got the part about um, being in Oxfordshire
and being in the sort of John Radcliffe catchment area.
Um,
the information they were handing out at the time
or offering at the time was very good.
And I was
put in touch with the Parkinson's nurse straight away.
Um,
and they stressed the importance of exercise,
which I think, really, non
medically
is still the only thing that has been shown to
slow slow the symptoms down.
Um,
the
I
think you may hear that.
I'm not sure,
but the only part of the research of the information I was
given that I'm not quite ready for yet was that brain donations.
Um, but
having not finished with mine yet, I'm sort of just holding off on that one.
But I think
the the breadth of involvement that it can be,
uh, is enormous. So you can pick and choose where you feel you've got most to offer.
Hm.
Yeah. Thank you.
Is there anything else you'd like to add?
Um, before
I stop the recording Mark,
I would think
I would encourage everybody to partake,
uh, and not feel that, you know,
You know,
I haven't got anything to offer because they
certainly have simply by being a Parkinson's patient.
Um,
they'll gain a lot of information. They'll gain a lot of knowledge which
builds and builds and helps.
Um, a
friend when I was first diagnosed,
um,
and I spoke to said,
Do you wish you didn't know?
Because the symptoms are so mild.
And at the time I said, Yes, I think I do because, uh, now I'm sort of
chewing it over in my head all the time. But actually that quickly dissipated and
becoming more involved with the research.
Um sort of
showed you
that there is some light at the end of the tunnel.
Mhm.
Yeah. Thank you.
So
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