‘Treating patients using the Internet’ Dr Alex Leff (consultant neurologist, UCL) and
Mark Jarvis (participating patient) on a novel approach to post-stroke treatment
AL So, a bit like Norma, I’m not going to talk very long. I’d like to leave more of the talk to
Mark, because I think that’s what we’re here for today - it’s to really hear from patients on how
they got involved. I’m not going to go too much into the project, but basically the simple idea
was that this was a behavioural treatment for a condition caused by stroke that affects people’s
vision, and because their vision is affected their reading is affected.
There is a treatment for this which is practicing reading moving text, so it’s very simple, you just
have to read text that is moving, and when you go back to reading static text, which is of course
how most stuff is, you get a bit faster. Not entirely back to normal, but quicker. Somewhere
between 30 and 50% of the baseline reading speed. So it’s a specific type of therapy for a
specific type of patient who’s had a specific type of brain injury, usually a stroke.
We weren’t the first people to do a study into this, we did the third clinical trial, if you like, of
this. And it was all very controlled: patients came up to the hospital, and we did all these
standard measurements on them. They had the therapy (which we actually sent to them) moving
text on little video tapes which we sent home to them, and when they got bored with the video
tapes -- which shows how long ago it was -- they would ask for a quicker one, or new material.
And we finished the trial, and we showed there was an effect, and, from the science point of
view that was, that was done. But we were left with this problem that Malcolm Grant was
talking about: which is how to get this therapy, that we’ve shown is effective, how to get it out
there. And the obvious way - as it’s such a simple thing, which is just scrolling text - is to put it
on the Internet. And that’s what we did. We helped produce, yes, a multimedia webpage. With
some funding from the Stroke Association we got a web developer, and all the rest of it.
But the challenges were then to design a web-based interface that patients would find useful and
attractive, so that they would come to the website and take part in the therapy. Originally we
were just going to put the therapy on the website, so they’d just have the moving text there, but
then we decided we could actually turn that into another scientific question, so we’d ask does
putting the therapy on the website, which is a novel thing (it has never been done before as far as
I’m aware) does putting the therapy on the website have as good an effect as when you do it in a
clinical trial?
So we had some tests on the website to see if the patients’ reading speeds are improving, and the
preliminary results suggest they are. But it was very important that the design of this was
correct. And Mark will hopefully speak about that because he was involved in the design. And
another thing he was involved in was getting patients to use the website, which is a critical thing
which is really PR. So having got this on the web - I didn’t know really anything about PR how do you then get it out to patients, how do patients…? you can do it through therapists, you
can do it through clinics, you can tell GPs and doctors, but actually, what you really want is the
patients going there themselves.
And I’m hoping that Mark will speak a little bit about that because he’s done a lot on the PR
front. So I think that’s the background and now maybe Mark can talk about his experiences.
MJ
I met Alex in 2009. One of the reasons I met Alex was because with my condition,
hemianopia, which basically means I have no right field of vision, I just naturally thought that I
just couldn’t read properly any more, and I never even actually ever had that explained to me by
anybody, until I met Alex. And that actually isn’t the case at all, it basically is because only
having one right, one field of vision, I am not allowed to pre-read, as most people do, with both
fields of vision.
With the Read-Right, obviously where it moves across, you are actually moving rather than your
eyes moving. But just going back a bit, obviously when we first got involved, it was actually
going to your place and going through a number of the setups to actually see what Read-Right
was all about. And do ingsomething that was very simple, a sort of critiquing. It had all been set
up, and it was all great, sitting on the screen. If you’ve seen the video you can see, obviously,
how you’re watching it, and things like that.
But just one little thing was -- everything was on the right hand side, and I can’t see on the right
hand side, so there was a slight problem there. But, again, it was just really good to have that
involvement, to actually show that my views, and what my recommendations were, were
actually being acted upon. And, you know, as Alex and his people have done so much research
with it, it’s really great, but none of them had that condition, so they, you know, when they’re
setting something up, they’re doing it with both fields of vision.
Anyway, so we basically went through that, and did a number of things. I think we changed
colours, changed fonts, and things like that, to, again, help people with the condition. Because
one thing that you do find -- if you’re reading a newspaper, initially when you see a newspaper, a
newspaper doesn’t just have a set of text, it has many articles etc in it. When looking at a
newspaper, your eyes just go mad, and you just can’t really focus on what to read first.
So most people’s approach is they just lay the newspaper down and then just wait for the news to
come on the television, which is not always the greatest. But again, with the Read-Right,
because there’s separate programmes in that, there’s reading a certain number of books, articles
etc, and there is reading the tabloids as well. And again, because the actual script is passing in
front of you. So the one thing that I found really sort of beneficial was that my views were valid,
and they were actually being put to use, and then obviously they were then being put out to the
general public by the website, other than, I mean, I’ll be very blunt, going to GPs.
And it was stated earlier that people that suffered from strokes in London usually are left pretty
much on their own. I can definitely say that in 2005, that was the case. I was just literally sent
home with my wife and, fortunately, she tried to do her best, and eventually that’s how we got to
meet Alex, but I’m glad to hear that actually London is actually moving up there on it.
But with the Read-Right, it gave me some of the confidence that I’d lost. The role that I do
outside, professionally, involved lots of presentations and things like that. I never had a problem
getting up and speaking in front of people, probably as you can see now, but for a number of
years after the stroke I did, because when it come to obviously reading the text, the dread inside
of me was that I was going to read the words wrong, or I wouldn’t read them fast enough, and
things like that. So it gave me some of the confidence back to think that, actually, there’s
nothing wrong with me, there’s nothing wrong in my brain, there’s nothing wrong that it stopped
me from reading, it’s a simple thing.
I only have half the sight, and, you know, it’s getting used to that process. Read-Right has
brought that. One of the great things, obviously, was after doing the actual research, we then had
quite a lot of media involvement, and eventually got into the Mail on Sunday, was it? It was the
Mail on Sunday? That’s what you heard.
AL
That’s our biggest hit so far, yes.
MA And it was a really good success, actually. No? A great photo of me, I do not think,
but… but it was a great success, because again, it took the condition and took the actual process
and what we’ve got in place out into the public. It wasn’t, it wouldn’t have got out just by going
to GPs and hospitals and things like that. I think it would have got lost. We got quite a lot of
participants back from that immediately.
I think you were saying, as well, that the people were just asking you, and being able to say to
other people what it was about, that was great for me. I, you know, literally a few days after the
article I was saying I was inundated with people emailing me, ringing me, asking me, well, what
is Read-Right and things like that. They knew somebody that had a stroke, can no longer ready
anymore, and things like that. And it becomes that serious that people actually do stop reading
totally, and to not be able to read, which is something that most people do from about the age of
4 or 5 onwards, is something that is, you know, to be robbed of that is just so frustrating for most
people.
So being able to actually put that into words, and then being able to put that out to the public to
see that, actually, somebody is out there trying to help people with my condition, was really
fulfilling for me. As I said, particularly, for a number of years, going to a particular neurologist,
and it wasn’t Alex, who basically really used to sort of not really give any sort of guidance
towards the sight issue, and the reading issue. Just, almost, used to say oh, but you’re doing very
well, you know, you get by day to day.
But it’s one thing, it’s a human nature thing, isn’t it? Once you’ve had something, you’re quite
greedy. You always want it, so you want to get it back. Being able to do the Read-Right has
definitely given me the ability to read faster, I think my reading speed actually increased quite
good.
AL
Yes.
MJ
And I did stop for a while, due to workload and things like that, but I’ve actually started
the programme again, and again seen that just, again, with the repetition of it, you can actually
maintain and then hopefully increase that speed. That it’s more about the confidence, and being
able to tell other people. You know, as I say, I’ve had people personally contact me, phone me
and email me, asking about family and friends that have suffered from strokes or brain injuries,
and they’ve lost their field of vision, and again have lost this ability to read.
And being able to actually give them really confident and really competent information on the
process has been very fulfilling for me, and, you know, I do definitely think it’s probably helped
me get over an issue from actually suffering from the stroke.