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Hallucinations, AI Apps

Judith Potts, founder of a support group for Charles Bonnet Syndrome, talks about the condition. Plus Jackie Brown, BCAB Chair, explains a range of AI apps and their significance.

When they lose their sight, many people start to suffer from visual hallucinations. These can be very distressing and many people suffer in silence as they fear it is the onset of mental illness. Doctors are often unaware that hallucinations are common in sight loss and the experience is called Charles Bonnet Syndrome - named after the Swiss naturalist who first described the condition in 1760. Judith Potts has founded of a new support group for Charles Bonnet Syndrome sufferers. Esme's Umbrella is named after Judith's mother and was suffered from CBS. Esme's Umbrella offers help and support for sufferers and their families. Judith has successfully lobbied the Royal College of Ophthalmologists who have agreed to agree to inform their patients about the condition.
Jackie Brown is the new chair of British Computer Association of the Blind, she talks to Peter White about a range of free Artificial Intelligence (AI) apps and their significance for blind people.
BBC Washington Correspondent Gary O'Donoghue has been using the new Seeing AI app and is enthusiastic about its potential for VI people..
Richard Pryor is a retired social worker who fears that VI people, like him, who are not smart phone users risk being left behind as yjr technology develops.

Presenter: Peter White
Producer: Cheryl Gabriel.

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20 minutes

Last on

Tue 28 Nov 2017 20:40

Transcript

THIS TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.  BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY. 

 

IN TOUCH – Hallucinations, AI Apps

 

TX:  28.11.2017  2040-2100

 

PRESENTER:          PETER WHITE

 

PRODUCER:            CHERYL GABRIEL

 

 

White

Good evening.  Tonight, the hallucinations which can blight the lives of many visually-impaired people.  But why do they go undiagnosed and unexplained?  And the latest smartphone app called Seeing AI, which is exciting some and alarming and puzzling others.

 

Clip

I really don’t know what an app is and AI for me, growing up in the country, is artificial insemination for dairy herds.  So that’s where I start from.

 

White

Well we’ll be finding out more about what it really does later in the programme.

 

But first, it’s reasonable to think that the main problem for people losing their sight is what they can’t see.  But for a surprising number it can be more a question of what they do see, but which isn’t really there at all.  Many report seeing frightening images which turn out to be hallucinations.  The problem is they often go unexplained, either because doctors don’t know about them either, or because patients are too scared to mention them.  And yet this phenomenon has been known about since the 18th Century.  It’s got a name – Charles Bonnet Syndrome – after the Frenchman who first identified it.  We’ve often mentioned it here on In Touch.  This is what Ruth, and first Margaret, described to us on a previous programme.

 

Margaret

I started to see these hallucinations but I didn’t want to tell anybody about them because they were rather scary and I thought people will think that there’s something wrong with my mind because nobody sees things like that.

 

White

And what were they?

 

Margaret

The first thing I actually experienced was blackberries in all the bushes, everywhere I went there was blackberries on the bushes as I looked.  The other thing that does puzzle me a lot – my partner, if I’m looking across the room, his head goes down on his lap.

 

Ruth

We’re very lucky at the Isle of Wight Society for the Blind we had a talk recently from one of the island’s optometrists and he mentioned Charles Bonnet Syndrome to people.  And out of the 20 in the room every single one had had some experience of it.

 

White

Really?

Ruth

And I think four or five of them had not mentioned to anybody before.  So it’s incredibly common.  I run the Macular Support Group on the Isle of Wight and I mean I always mention it to new members.  Without fail they’ve all had some experience of seeing something that isn’t there and nine times out of 10 they haven’t said anything.  It’s often age related eye conditions so I think they often think there’s maybe something else going on in the background, so therefore they don’t speak out.  And worry themselves unnecessarily a lot of the time.

 

White

And indeed as Margaret made clear, the key difference for her came when she knew what she was actually dealing with.  And that’s what bothers journalist Judith Potts.  Judith came in to the studio to tell me about her late mother, Esme’s, experience.

 

Potts

Well mum, Esme, was in her early 90s, she was incredibly independent, lived on her own, despite her failing eyesight she completed the Telegraph cryptic crossword every day, which is more than I can do, and enjoyed all her friends.  That is until one day when I was leaving her flat and she suddenly said – I do wish these people would get off my sofa, they go if I tap them on the shoulders.  Well I didn’t know what to say.  I said that there’s nobody on your sofa.  And she said – well it’s not just that, they haven’t got any faces so that’s rather horrible and there’s this other creature.  And she described like a gargoyle creature.

 

White

Because you mentioned and in a way quite matter of factly but I get guess – I mean how was she actually feeling about it?

 

Potts

Well I think this had been going on, I suspect, for some months…

 

White

And she hadn’t told you.

 

Potts

…she hadn’t told me and I think she suddenly could bear it no longer.  So she was getting very upset.  And I thought well this must be some form of mental illness, possibly dementia with her age, but she didn’t seem to have any problems with her mind, just that she was seeing these things.  She said – I’m pretty sure they’re not really there but I just wish they would go away because they are interrupting my life.

 

White

Having talked to her about it did you try to get her treatment?

 

Potts

I did, I rang her ophthalmologist who infuriatingly refused to discuss it with me.  So I went to the GP, she’d never heard of it.  And then I went to the optician who’d also never heard of it.  So then, of course, I did what we’re always told not to do – I went on to the internet and found Dr Dominic Ffytche who is at King’s London and he is still the only globally acknowledged expert in Charles Bonnet Syndrome. 

 

White

And he has indeed been on this programme.  But this is the mysterious thing about this, Judith, which I don’t quite understand, which is – I mean we’ve talked about it, clearly the Macular Society is trying to draw attention to it, you’re trying to draw attention to it – why don’t people know, particularly why don’t ophthalmologists know?

 

Potts

I think it’s because there is nothing that can be done, so there is no doctor to whom they can refer and also it doesn’t fall into a particular medical category.  So even if there was someone they don’t know who to refer.

 

White

But of course there is something that can be done because people can be told what it is and your mum could have been told…

 

Potts

She could.

 

White

… straightaway.

 

Potts

Absolutely and forewarned is forearmed.  And now the Royal College is going to – possibly insist is too strong a word but they are certainly going to ensure that most of their members will warn their patients.  I think also some of the doctors say to me – well I don’t want to tell them because if it doesn’t happen they’ll be worrying about it.  But I said I think it’s just better if the warning is there, if it doesn’t happen that’s absolutely marvellous and of course it doesn’t to everybody.

 

White

But you’re trying to do more about it aren’t you because you’ve started Esme’s Umbrella…

 

Potts

I have.

 

White

…named after your mother, what’s it for and what’s that going to do?

 

Potts

Well after she died I thought I really have to do something about this, she had struggled with this condition, we didn’t know what to do.  So I launched an awareness campaign and over the last two years I have been everywhere really to speak to all sorts of different members of the medical profession…

 

White

But in the meantime clearly what’s really needed is some help for people when they need it because you said to me, I think, at one point this ruined the end of your mother’s life.

 

Potts

Yes it did, it did, the last few years of her life she was simply tormented by the hallucinations and I think they were getting worse.  It was just all too much for her.  And people with severe Charles Bonnet Syndrome, who call my helpline or who email me or members of their family who do on their behalf, they say I cannot go on, this is like living in hell.  And the description of the hallucinations that some people have to live with are totally horrific – fire, rushing water, the whole room sometimes changes.  One lady told me she woke up and she thought her bed was on fire.  And because the hallucinations come directly from the brain they are sharp and clear, as opposed to the person’s normal sight.

 

White

Judith Potts.  And I hope hearing about those experiences may have reassured people going through this that there is a rational explanation for it and there are things that can be done.  There are more details about Charles Bonnet Syndrome and Esme’s Umbrella on our website.

 

There’s also some more potential good news for visually-impaired people frustrated by that perennial problem of identifying things that really are there.  What’s on the table in front of me?  What’s in the bland tin on my kitchen shelves?  Or when I’m trying to identify items out shopping.  But there’s a new app – isn’t there always – it’s called Seeing AI and although there are a lot of these popping up on smartphones, this one really is causing quite a stir.  One of those people who’s using it and who has greeted it with enthusiasm is our BBC Washington correspondent Gary O’Donoghue.

 

O’Donoghue

I’ve been using the Seeing AI app for a few months now and I find it incredibly useful.  It kind of draws together a whole bunch of functions that other apps do and does some more as well.  So, for example, the product category where it tries to read barcodes, I use it a lot obviously for reading tins and packets out of the kitchen cupboards and the great thing about it that it doesn’t just tell you what they are, it often tells you instructions – so cooking instructions or serving instructions.  And obviously that depends on the database of barcodes but here in the US it does work really well.  And it’s very rare that I pick a product up from the cupboard and it can’t read it.  It also has an audio guide, which tells you whether you’re pointing it properly at the barcode itself, it’s really very good. 

 

I also use the short text setting and the thing I really like about this is that you don’t have to take a picture, you don’t have to press a button to take a picture and then get the app to interpret the text, which you have to do with some other apps.  You simply point it at the thing you’re trying to read.  And I’ve used this countless times, particularly in hotel rooms when you’re trying to work out which side of that card is – please clean my room – and which side is – please do not disturb.  And that works really well, that’s a sort of – a use case that I’ve used dozens and dozens of times.  And then of course with Christmas coming up there’s a really fun part to this app which is the person setting.  So you can point it at a person, it tries to describe them to you.  And the really cool thing is that it tries to guess their age at times as well, which can be a double edged sword. 

 

All in all I think it’s a really worthwhile thing to get and to try, it’s free, there’s no downside in that sense and I’ve used it a great deal over the last few months.

 

White

So Gary O’Donoghue obviously a bit of a fan.  But even if you’re confident with the technology, as Gary clearly is, where does this fit in with the other equipment that’s around doing similar kinds of things?  Well who better to ask than Jackie Brown, who’s been, this weekend, at a get together of the British Computer Association of the Blind, indeed as from yesterday she’s its new Chair, so congratulations for that Jackie. 

 

Brown

Thank you.

 

White

Now how significant is this latest app do you think?

 

Brown

It seems to be very popular Peter among lots of techie users who would already be using smartphones anyway.  It’s only available in the app store on IOS, at the moment, it’s not available for android users.  But those who are using it are really enjoying it.  I like the OCR part of it…

 

White

That’s the optical character recognition yeah?

 

Brown

That’s right.  My husband and I both receive talking books from RNIB and if you want to identify whose book belongs to who it’s really good at just pointing that app at the CD.  I’ve had more success really quickly on the trot with that than I have using a KNFB reader, which I’ve also got on my phone.  So that’s interesting.

 

White

How does it compare with some of the others, I mean things that we’ve featured on the programme before which are ways of identifying objects, for example, or the colours of things – Tap Tap See, Be My Eyes – how does it compare with them?

Brown

People seem to be really liking it, they think it’s good value to have all those things in one app.  Then there are others who say that they just can’t get aspects of it working.  So it is very subjective in the sense that there are lots of other apps out there that maybe do a good or better job.  So it really depends on what you want from an app and what you want it to do.  But there are also people out there who can’t use smartphones, don’t want to use them, just find touch screens really difficult and feel that they’re very, very tied to their phone if they’re going to go down that road. 

 

White

What does this mean in financial terms because as I understand it Seeing AI is free, at the moment anyway, it’s a free app and so are some of the others.  Does that mean that this is the end of people spending hundreds or in some cases even thousands on free standing readers and that kind of thing?

 

Brown

In a way it is going to make the job of selling those kind of devices with four figures more difficult.  But the other side of the coin is that people who need physical buttons, who prefer standalone equipment – they’re the ones that are going to be left behind if this kind of material isn’t produced in solid form, if you like, if it’s just going to all be confined to apps then they’re the people that are going to be left behind and that is the concern.  But I think the days of spending thousands of pounds, if you like, on dedicated barcode scanners and reading machines, I think that we are working towards much more cheap apps and stuff like that.

 

White

Jackie Brown, thank you very much indeed.

 

Well listening to that from our BBC Cornwall studio in Truro was retired social worker, Richard Pryor.  We’ve asked Richard to listen to this because he’d already got in touch with us with some concerns about the gap that he felt was widening between people who were sailing ahead with this kind of technology and those who he thought were being left behind and not offered the support they might need to take advantage of it.  Richard, just explain your concerns.

 

Pryor

I totally agree with what Jackie was saying later on in the interview because that’s the first person I’ve actually heard acknowledge that there are an awful lot of us, I don’t know percentage, but an awful lot of us who actually don’t know the first thing about technology.  And, for example, I really don’t know what an app is AI for me, growing up in the country, is artificial insemination for dairy herds!  So that’s where I start from and it is quite frightening.  When I was working the most important bits of equipment for blind people who were more interested in anything were the talking books, the wireless for the blind and talking watches.

 

White

But of course Richard because time – time moves on, there’s progress, things happen and because somebody can’t use a piece of equipment that’s no reason to stop those who are benefitting from it and who are good at it.

 

Pryor

No that’s right.  My concern is that we’re going backwards.  I worked for 30 odd years and I received fabulous support, I had a wonderful career, I thoroughly enjoyed every minute of it and I’m still very happy about the way things are going.  But when you look back at the support that young people have got nowadays and the support that I had, there’s absolutely no comparison.

 

White

Now you’re not talking about technology there, you’ve widened it out, so what kind of areas of support did you get that you think that people aren’t getting now?

 

Pryor

Okay, I lost my sight over about three days, went completely, now the first person I had was a technical officer for the blind, she came in.  Then I had a blind person’s resettlement officer, specialist officer from the Job Centre.  Then I was sent off to Manor House Torquay for 12 weeks, where I had six lessons a week in mobility, apart from anything else.  They suggested a job for me that I would never have thought of in a million years.  Came away from there, trained up with a guide dog, the Guide Dogs were great in those days, they had their own centres until they decided to close them down, which is the biggest mistake they’ve ever made.

 

White

Well in a few weeks’ time we’ll have Guide Dogs on, they can talk about some of those things. 

 

Pryor

But going for employment, the first just I applied for, which was back in the ‘70s, they wrote back and said I’m sorry you can’t drive.  So I wrote back and said I can drive, I just can’t steer.  At which point I got an interview.  But the second job I went for, which was down here in Cornwall, which was ’83.  Before I actually came for interview the RNIB advisor had been here, the blind person’s resettlement officer had been to talk to my employers and by the time I came for interview they weren’t interested in how I would record things, how I’d get around or anything because they’d got all that explained to them and all I had to do was explain what I was doing in terms of social work.

 

White

And you’re saying that wouldn’t happen now?

 

Pryor

No doesn’t happen now.  I’ve watched several young people tried to get employment and it’s appalling.  A lot of the software companies use these days are not accessible, using specialist software, I mean I used Dolphin which is great but you know a lot – you can’t get at it, you can’t get a lot of these software programs…

 

White

But is that because the support isn’t there or is it because of the nature of the employment market now?

 

Pryor

No, I think the support not’s there.  We’ve got – I mean you’ve heard Jackie talking about all these fancy gadgets and things like that, I mean they sound really great, I’d like some of those but I do need somebody to show me how to use them.

 

White

Richard Pryor.

 

So is there a widening information gap amongst blind and partially sighted people and if there is how should we be tackling it?

 

You can call our action line on 0800 044044 for 24 hours after tonight’s programme, you can email us at in touch at bbc.co.uk or click on contact us on our website, where you can find out more information about Seeing AI and Charles Bonnet Syndrome.  And you can also download our programme from there.

 

Next week we’ll be Christmas shopping on air, so do let us have your suggestions, we want to know examples of the best and the worst presents you’ve ever received.  From me, Peter White, producer Cheryl Gabriel and the team, goodbye.

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