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IN TOUCH 鈥� Moorfields Eye Hospital鈥檚 app and more tips from writers

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TX:听 02.03.2021听 2040-2100

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PRESENTER:听 听听听听听听听 PETER WHITE

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PRODUCER:听 听听听听听听听听听 MIKE YOUNG

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White

Good evening.听 Tonight, the technology developed to test your vision from your own home during lockdown.听 And we hear from more visually impaired writers with tips on how you might give it a go yourself.

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If you can鈥檛 see what鈥檚 in front of you, look at what鈥檚 inside you.听 Turn up at the page because if you turn up at the page you鈥檒l write something and even that is better than writing nothing.

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White

We鈥檒l hear more from Steve and Giles a little later on in the programme.

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But first, hundreds of patients at the Moorfields Eye Hospital in London have been using a smartphone app to test their vision from home while attending appointments remains such an issue.听 The use of this home vision monitor is gradually being introduced elsewhere in the UK.听 Britta Gould is one of those who鈥檚 been using this app, she has a form of Macular Degeneration.

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Britta, just tell us a bit more about your condition and how much sight you have.

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Gould

Well I鈥檝e got Macular Degeneration in both eyes.听 One eye is very bad, the other eye is a bit better.听 But I can get away with seeing quite well at the moment.听 I have a slight difficulty in sort of putting keys in keyholes and getting money out of the machines but it鈥檚 not too bad at the moment but I know it鈥檚 going to get worse, it cannot get better on its own.

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White

So, how did you feel a few months ago when you were asked to actually try this app and monitor your sight yourself?

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Gould

Well, I mean, I鈥檓 sort of quite old and I think all these things are a bit rubbish, so I didn鈥檛 take too much notice of it and then I sort of looked at it, it was so easy and it was quite fun, in a sort of way.听 So, I said, well I鈥檒l do it.

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White

So, just explain to us, when you do this test what do you actually do and what do you see?

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Gould

Well, when you do the test, there are four circles that come up about half an inch each and one is crooked, so you press the crooked one.听 You do that about six or seven or eight times.听 If you pick up the one crooked one all the time, the right one, nothing is wrong.听 And then they change the other eye and the same thing appears and that鈥檚 it.

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White

So, basically, so you鈥檙e looking at shapes and this is a test that you do every time, so if something shows up different that is what your eye specialist will see, they will know?

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Gould

They will see that I鈥檝e got it wrong or something, yes.听

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White

Britta, thank you.听 Let me bring in Konstantinos Balaskas, who is a consultant ophthalmic surgeon at Moorfields Eye Hospital.听 Konstantinos, this technology was designed before lockdown I think, how useful, though, has it been to help people gauge the state of their sight without actually having to head for a hospital appointment?

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Balaskas

This technology has proven very useful.听 Importantly, we can keep track of these vision tests our patients do at home and we receive notifications, an alert is triggered, when there is a significant change in vision.听 That can make a great difference and can allow us to act and bring in hospital patients at the right time and prevent the disease causing vision loss.

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White

And this app is free to use but effectively offered on prescription, as it were, you know, an expert has to be linked to someone鈥檚 use of the app?

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Balaskas

Exactly.听 This is an app that is free to download and install but it can only be used once prescribed by healthcare professional, so that it creates this unique digital link between the patient and their clinician at the hospital who can then decide the appropriate management.

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White

Any danger that it could cause alarms, rather than reassurance?

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Balaskas

That is a great question and at present, the patients themselves are not informed of their numeric results of their vision test because they can be sometimes difficult to interpret and we don鈥檛 want to cause unnecessary concern.听 On the other hand, some sort of feedback and communication with our patients is essential for reassurance and for continuing the engagement of our patients with this initiative.

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White

And you鈥檝e been talking, so far, about Macular Degeneration but what other conditions could this be useful for because Macular disease is a very common form of sight loss in the UK but there are many others as well?

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Balaskas

You鈥檙e absolutely right.听 Macular Degeneration is the most cause of vision loss in the UK for people over the age of 55 and there are other stages within Macular Degeneration where the application of this technology would be useful.听 One, it is before the development of the disease, so that it is caught early and treatment starts early.听 But beyond Macular Degeneration, another vision threatening condition that is quite prevalent in the UK is diabetic retinopathy.听 And this technology will also be useful and suitable for monitoring diabetic retinopathy and particularly of diabetic macular oedema which is a treatable form of diabetic retinopathy.听

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White

Do you see this continuing to be used after lockdown, indeed could it become a kind of standard procedure?

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Balaskas

Lockdown accelerated our efforts to seek alternative ways to continue monitoring our patients and preventing vision loss.听 But it鈥檚 part of a long journey to allow keeping patients outside of hospitals as much as possible, moving their care to the community and even to their own home.

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White

Just want to go back, finally, to Britta, quickly, can you see yourself carrying on using this when it is more possible for you to go for appointments?

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Gould

Oh yes, definitely, because it鈥檚 so easy to do it and to get an appointment, as you know, it鈥檚 very difficult now, of course, but it might be difficult in the future, it鈥檚 always difficult to get appointments, so this is very good.听 So, if you see something is wrong you have to really press to get an appointment but it is important to do it quickly.

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White

Britta Gould, Konstantinos Balaskas, thank you both very much indeed.

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Both

Thank you.

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White

And thank you for all your emails about railway safety for visually impaired travellers.听 Last week we discussed in depth the report into the death of Cleveland Gervais, who fell in front of a train.听 This was at Eden Park Station in Southeast London which didn鈥檛 have tactile paving to warn people that they were approaching the edge of its platforms.听 The station wasn鈥檛 staffed at the time of the accident, either.听

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Well, Jonathan Fisher emails: 鈥淢any people are very afraid of using our railway system, not only fearing walking off the platform edge but also because of the large gaps between train vehicles and the platforms.鈥澨� He goes on to say: 鈥淚 appreciate the cost to remedy the antique installation is huge, perhaps we should be supporting a class action to sue for action to be mandatory under Equality law.鈥�

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David Hilliard echoes this point.听 David says: 鈥淚 understand that the cost and time for Network Rail to refurbish the rest of the platforms and add tactile paving at platform edges will be great.听 Why not use the same material as the rumble strips used on motorway outer lanes?听 This material is hardwearing, it can stand all weathers and it wouldn鈥檛 need any maintenance.鈥�

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Lisa Jones says: 鈥淢y husband has been a railway commuter between two local stations in Nottinghamshire since the 1990s.听 Both stations are unstaffed.听 Blind people are reliant on the train staff or the general public to see them safely on and off the train and out of the station.听 Frankly, staffing is an ongoing cost, whereas tactile paving is a one-off.听 Since we would have to prioritise our expectations due to limited funding then standardisation of tactile paving across the whole network would be a good start and compromise.鈥�

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Bill Guess recalls falling backwards from a platform at Queens Park Station in London back in the 1960s.听 He says a train thundered past 30 seconds after he was helped back on to the platform by station staff.听 鈥淥f course,鈥� says Bill, 鈥溾��if there had been tactile markings on platforms in those days, I鈥檓 fairly confident that this accident would never have happened.鈥�

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You can rely on us to stay with this story and to monitor progress on the installation of tactile platform edges.

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Now, just before Christmas, we heard, on In Touch, from three visually impaired authors 鈥� a poet, playwright and a novelist.听 I always enjoy presenting In Touch, of course, but I found this programme particularly fascinating as they talked about why they wrote, how they wrote and indeed what part their varying degrees of sight played in their ways of self-expression.听 Which is why I was particularly pleased to hear from a number of you, who said you鈥檇 enjoyed it as well, including some budding and a few well-established writers.听

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We鈥檝e invited two of them on to the programme today to talk about their work and add to the pot of advice, hopefully, to help those who鈥檇 like to have a go themselves.听

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As his sight has gradually deteriorated Steve Forrest had to give up his original trade 鈥� he was a butcher 鈥� he endured, in his own words, 19 years in a call centre but is now thoroughly enjoying writing with three books already published.听 Meanwhile, Giles Abbott is a professional storyteller 鈥� a performer who, when he still could, worked on stage, in schools, in pubs.听 Of course, lockdown has made that impossible and he鈥檚 now taken his skills online.听

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Steve Forrest first, what brought you to writing because you didn鈥檛 write particularly before you lost your sight?

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Forrest

No, not really, well I dabbled occasionally but I read an awful lot and apart from the big name writers, the established writers, there鈥檚 an awful lot of new writers out there and listening to them, some of the time, I got the feeling that could be better, well I can鈥檛 do any worse, can I, let鈥檚 have a go.听 And so, I just had a go.

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White

And you say listening to them, obviously audio books is the way in which you鈥檝e had to access them?

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Forrest

Mainly yeah, I mean I do listen to a lot of audio books but I think these days with all eBooks being accessed through any sort of device, you can 鈥� okay, so you鈥檝e got to listen to a relative of Stephen Hawking narrating the story to you but it鈥檚 not so bad but it really does open up the field to that now I can read any book that anyone else can and so, yeah, I do a lot of eBook reading.

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White

Now what part does your blindness play in what you write, which is what we talked to our other authors quite a lot about?

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Forrest

Yeah, that was kind of interesting and I鈥檝e noticed through my researches that most people with a visual impairment or blind people tend to write regarding their sight loss or including their sight loss and to me I find that horrific, I live with the blinking thing every day, every minute of the day and I really don鈥檛 want to give it anymore headspace than it naturally takes.听 I like to write without any reference to my sight loss.听 There are episodes from my sight loss that I take into my books.听 I was able to write an account of someone in the dark in a tunnel and how they experienced it, which obviously 鈥� well that鈥檚 my day anyway.听 So, I use my experiences but I didn鈥檛 write about sight loss.

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White

And yet, Steve, people say write about what you know, are you running away from it a bit by not writing about it?

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Forrest

Yeah, people do say write about what you know and I think we鈥檙e all thankful that J.K. Rowling ignored that sage advice when she wrote Harry Potter.听 I don鈥檛 ascribe to it personally.听 I think every single person has at least one good story in them and it might not be about something you know.听 So, just write it, give it a go.

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White

Right, now you鈥檝e given it a go, you鈥檝e written some fiction, you鈥檝e had three books ePublished, I think, are you making any money?

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Forrest

A little, a little.听 I had a look yesterday and I think out of those three books the current totals are around about 11-1200 books have been taken up.听 So, it鈥檚 not all about the money.听 Obviously, if a publisher turned around to me and said here鈥檚 a big bag of money, write me something, I鈥檇 probably oblige just to help them.听

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White

But that鈥檚 not why you do it?

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Forrest

No, it鈥檚 not why I do it.听 I find it very empowering, it鈥檚 very self-rewarding and it鈥檚 challenging, but in a good way.听 I can write for two days a couple of chapters and then discard it and start again because it didn鈥檛 feel right.听 So, for me, it鈥檚 a self-challenge.

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White

Let me bring in Giles, Giles Abbott.听 Now you鈥檙e 鈥� I know you do some writing but you鈥檙e a storyteller first and foremost, how did that come about?

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Abbott

Well I lost what I鈥檇 lost of my sight, which is about 80% of it I think, 21, 22 years ago, I forget and obviously, with that I lost reading very, very quickly and then having lost reading, which had been one of the loves of my life, I came across traditional storytelling in a pub in Yorkshire in Hebden Bridge, the Shaggy Dog Storytellers still meet their every 鈥� last Friday of every month I believe.听 And I heard people telling stories and I just thought 鈥� wow 鈥� and fell in love with it.

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White

And this can be done professionally?

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Abbott

It can, it can also be done as a participant, as an amateur participant, amatory, meaning somebody who loves it.听 But I鈥檝e been 鈥� yeah, people often say to me 鈥� oh storytelling, that鈥檚 a dying art isn鈥檛 it?听 Well, I鈥檝e been making a quietly modestly healthy living from this dying art for 20 years now.

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White

Now what was it about our writers which prompted you 鈥� and I鈥檒l put the same thing to Steve in a minute 鈥� to send what was, I must say, a most generous email about that programme, what was it that got to you about it?

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Abbott

For me, they were just really good writers.听 They also happened to be visually impaired, and that was part of how they came to write and part of their process.听 But more than that I just really responded to the quality of their work.

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White

They were all so fascinating, I didn鈥檛 quite give them as much time as I鈥檇 intended to, to pass on advice to people who might want to have a go, so I want to make up for that a bit.听 Steve, first of all, what would you say to someone who鈥檚 thinking of it, teetering on the edge, worrying about what they actually can write about?

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Forrest

Principally, I鈥檇 say, if you鈥檝e got an inkling to write something, if you鈥檝e got a story that鈥檚 partly formed in your head and you鈥檇 like to do it, give it a go.听 Don鈥檛 write for fame or glory 鈥� that might come, it might not 鈥� write for yourself.听 If it鈥檚 something that you enjoy doing, I鈥檓 sure other will enjoy it and I very much doubt that you鈥檇 be disappointed with your efforts.听 What could go wrong?

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White

And Giles, what about you, what would you say to people who feel that losing the visual element of their lives or never having had it maybe, discourages them or disqualifies them from writing?

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Abbott

No, turn your imagination inside and look at what鈥檚 in there.听 If you can鈥檛 see what鈥檚 in front of you, look at what鈥檚 inside you.听 Turn up at the page, because if you turn up at the page you鈥檒l write something and even that is better than writing nothing.

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White

And when the ideas dry up, what do you do?

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Abbott

When the ideas dry up, I just do something because it鈥檚 about sort of running water through the pipes.

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White

That鈥檚 a good analogy.

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Abbott

It鈥檚 not mine, I heard it from a songwriter I met on the train, I鈥檝e no idea who he is.听 [Laughter]

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White

But it鈥檚 a writer鈥檚 analogy, it鈥檚 a good one.听 Steve Forrest?

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Forrest

It does happen from time to time, you get moments 鈥� days, even weeks 鈥� where nothing seems concrete enough to put on paper, if you like.听 But there are just as many other times when you鈥檝e got too many thoughts going on in your head.听 What I always do is I create a folder and write maybe just a page, just a few words, about what that thought is and I put it to one side and then if you do get a blank moment, I can go back to any of those started projects and maybe pick one of those up.听 So, I don鈥檛 think you鈥檙e ever blank for long.

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White

Giles Abbott, Steve Forrest, thank you both very much indeed.

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Do let us know about your own writing successes, failures, hopes, dreams.听 And that is all for this week.听 We are continuing the theme of accessible information, next week we鈥檙e going to be looking at how easy or difficult it鈥檚 going to be for visually impaired people to fill in the upcoming census forms.听 And we鈥檙e also planning, in the near future, to look at how well or otherwise banks have performed when it comes to getting information about the state of your account, your in-goings, your outgoings, etc.听 Is lockdown being used as a reason for a drop in accessible services?听 You can email intouch@bbc.co.uk and this plus previous programmes, you can find them on our website bbc.co.uk/intouch.

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From me, Peter White, producers Mike Young and Simon Holborn and studio managers Chris Hardman and Sue Stonestreet.听 Goodbye.

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