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Questionnaires:

Contact Dr Jess Hayton Jessica.hayton@ucl.ac.uk or

Jessica Marshall Jessica.marshall@ucl.ac.uk.

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IN TOUCH – Love Stories

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TX:Ìý 19.11.2019Ìý 2040-2100

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PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌý PETER WHITE

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PRODUCER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌýÌý LEE KUMUTAT

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Clay

My partner, Robert, and I first met 15 years ago.Ìý We were working on a show together.Ìý He was a very reliable trombone player and I thought, he’s a lovely, very steady guy and he’s very boring and I’m not interested in the slightest.Ìý He always would take me to lunch, we’d all troop down to this café and for some reason he attached himself to me and said – oh, it’s alright, I’ll take Sally – and all the rest of the band kind of avoided me and I thought – oh, god, do I smell?Ìý But it wasn’t that, it was that they were, unbeknownst to me, they were kind of backing off so that Robert could get a go at guiding me.Ìý He’s fully sighted and I’m totally blind, so I’d never really been out with a sighted person before him.Ìý I hadn’t really grasped in my head, or wasn’t allowing myself to think that any sighted person would be interested in me and therefore at the end of the first week he took me out in the evening, got me sloshed and we had a laugh and then he went off back home and I went back home and cried and thought – he’s not interested.Ìý Finally, he took me to the pub, had loads and loads of wine and eventually said – oh, can I drop my trombone off at your house.Ìý So, he dropped the trombone off and then he stayed as well.Ìý The next day I waltz into work carrying his trombone and the whole cast were all there and they give me a round a applause and go – rrhh rrhh, guess what Sally’s been up to this weekend.Ìý Yeah, he turned out to be a lot less boring than I had originally thought.

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Music

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White

Pianist and singer Sally Clay with her story in answer to a question from a listener.Ìý Stanley has recently lost his sight and he wanted to know how visually impaired people meet their partners.Ìý And he also asked why a sighted person would want to marry a blind person.Ìý So, Stanley, sprinkled throughout In Touch tonight are a few more attempts to answer those questions.

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Now sleep has also proved a bit of a puzzle for some visually impaired people but scientists are inching towards understanding it better.Ìý There’s been a good deal of study done on how blind adults sleep, particularly those with no light perception at all.Ìý But we know much less about the effects of sleep disruption on visually impaired children.Ìý And what can give them a restless night.Ìý Well now, psychologists at University College London are putting out a call to help them find out whether in fact visually impaired children do sleep less than sighted ones.

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Dr Jess Hayton is directing the project, she told me more about what they were looking for.

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Hayton

So, the project in this age range of 5-11 years, it’s never been looked at before, so there are some papers in the literature from about 12 years upwards, so, through adolescence into adulthood but we don’t really know much or anything about the younger population of children with vision impairment.

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White

Why, is there a hypothesis that you’re trying to test?

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Hayton

Not really, so in the scientific sense we’ve got an open mind about how the data will present but anecdotally my job predominantly is working with habilitation specialists and they report that there are sleep problems and sleep disturbances in children, in young people, with vision impairment but the research isn’t there to kind of back up those claims.

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White

And what kind of problems do they report?

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Hayton

So, parents tend to report greater sleep onset delay, so how long it takes you to get to sleep.Ìý Greater sleep anxiety, so, children with vision impairment might be more anxious about going to sleep and the bedtime routine.Ìý And parents also report more frequent night wakings, so, how often the child wakes up through the night.Ìý And the papers, the literature, that I’ve been looking through kind of suggests that melatonin could be one of the predictors of poor sleep in children with visual impairment and blindness but there’s so many sleep problems and sleep disturbances in sighted children and sighted adolescents as well, trying to portion out or tease out what could be the reason is part of the exciting project that we’re doing.

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White

And just explain the significance of melatonin.

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Hayton

So, if we think of melatonin and cortisol as kind of complementary hormones.Ìý Melatonin is responsible for helping us get to sleep.

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White

And cortisol is associated with anxiety yes?

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Hayton

Yeah, so, kind of think of it as the stress hormone.Ìý So, when we go to bed at night our melatonin increases and our cortisol decreases, which helps us get to sleep.Ìý And then when we wake up the cortisol elevates and the melatonin decreases.Ìý Melatonin can be triggered by light, so the light/dark cycle of the day, which helps our circadian rhythm, perhaps cortisol might be a greater predictor.Ìý That’s not to leave behind the melatonin but if we think of children with vision impairment having greater anxiety, which our preliminary findings show, that elevated cortisol, before going to sleep, suppresses the melatonin which might be delayed onset anyway, so, it might – it could be the relationship between cortisol and melatonin.

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White

What do we know are the consequences of sleep deprivation on children in general?

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Hayton

Okay, so, it can have an effect on memory and cognitive functioning, they might have attentional problems, problems focusing, they might be more irritable, they might fall out with friends more often.Ìý There’s huge academic and emotional and personal consequences of poor sleep.Ìý But one of the remarkable things about the childhood brain is that they’re better at consolidating sometimes through the day after poor sleep.

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White

What exactly are you trying to establish, what do you hope this will tell you that we don’t know already?

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Hayton

We hope to find either support for the claims that there’s poorer sleep in vision impairment or that sleep in vision impairment might present itself differently, compared to sighted children.Ìý But we know already that sighted children do tend to have problems with sleep or at least the sighted children that come to our studies.Ìý So, we’re just trying to see if there’s any difference and if there is what can we do about it and can we put it down to vision impairment but is vision impairment explaining part of the difference or could it be something else.

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White

Because we talk far more, perhaps, now, about stress than we used to and I’m just wondering whether – are we making assumptions that visually impaired children must be suffering from stress because of the visual impairment?

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Hayton

No, no, no, there’s no underlying assumption here that we think children with vision impairment are more stressed or more anxious but we can, through using questionnaires and parental report, we can get an overall score of anxiety, so we’re not putting our thoughts on to those children or young people.

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White

So, what do you need to children to do in order to get the data that you’re looking for?

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Hayton

To start, we’ve got a Qualtrics questionnaire, which is just an online questionnaire which looks at medical history of the children, it also includes a childhood sleep habits questionnaire, which the parents complete and that gives us an overall score of whether the sleep could be a problem or not.Ìý And it also separates into sub-scales, so we can see if there’s bedtime resistance, parasomnias, sleep onset delay, things like that.Ìý But then the fun part, for the children, is that they get to wear an actigraphy watch…

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White

What’s that?

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Hayton

I’m pleased you asked.Ìý It’s a motion sensitive watch, so it doesn’t have like a clock face, or anything like that, the watch goes on the non-dominant wrist of the child and basically it captures their movement through the day and through the night.Ìý So, that data combined with a sleep diary can help us set the parameters of bedtime and wake time and we can see the motion of the child through the night, so, when they wake up or when they’re in deep sleep and we use that to analyse.Ìý It’s the sciency bit around this project, which gives us more accurate reading of each child’s sleep.

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White

That’s Dr Jess Hayton.

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And you can find details about how to help with the project on our website.

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And now, back to our love stories.Ìý And just in case no sighted person wanted to marry them blind performers Denise and Stefan decided to marry each other.Ìý Here’s how it started.

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Stefan

So, I’d been asked to dep for a friend of mine at a gig for RNIB at the BAFTA buildings called The Making a Difference awards in January 2016.Ìý I’d been told that there was going to be a professional singer who was going to be hosting the event and asked whether I would be prepared to play for two pieces at the end of the night.

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Denise

I was on the tube train and there was – I soon became aware that there was a man sitting opposite us.Ìý This man opposite leaned forward and said – Excuse me, do you know what time it is?Ìý And I was wearing a tactile watch at the time and I flicked up the front of the watch, checked the time and as I clicked it back down it makes a very – anybody who wears a tactile watch will know – it makes a very distinctive click.Ìý And the man must have heard it and he said – ooh, I used to have one of those but I went swimming in it – and we laughed and went – ha, ha yeah that would do it, that would write it off.Ìý And we laughed.Ìý And I thought – I wonder if he’s being serious, did he have a tactile watch.Ìý Yeah, what are the chances of a blind person asking a blind person for the time on the train.

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And then when he stood up to get off the train, he flicked his cane out and I thought – oh, he is blind, oh wow, that was a coincidence.Ìý I arrived at the BAFTA buildings and went over to meet the pianist and I thought – we’ve met before, we’ve met really recently.Ìý And I knew straightaway who he was.Ìý And it was the lad from the train, it was the young lad from the train, who’d asked me for the time.Ìý So, we hugged and we greeted each other and I don’t think I even said to you at the time – I’ve met you earlier – did I?

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Stefan

No.

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Denise

Because it was all very rushed.Ìý And we had a hug, we hugged for slightly longer than we should have probably.Ìý I think it’s safe to say were both instantly quite attracted to each other.

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Stefan

Yeah, definitely.

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Denise

That started us on the track of working together.Ìý But when you think about it, he was 22, I was 34, I had three children, it was a huge, huge commitment quite soon after we became the village scandal, we did create quite a huge scandal.

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White

Denise Leigh and Stefan Andrusyschyn

Now listener, Tina Snow, on the Isle of Wight got in touch with us recently about a project of her own.Ìý It all stemmed from an incident a few weeks ago and an unexpected knock at the door.

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Snow

Well what actually made me really think seriously about my safety was a policeman knocked on my door and he said there had been an attempted break-in at the neighbouring property.Ìý I’m totally blind, I live on my own with my guide dog.Ìý I was faced with a dilemma – do I let him in or not. ÌýSo, I asked him if he had a braille ID card and he didn’t.Ìý I foolishly didn’t think, I just thought okay, he’s a policeman and let him in but he could have actually been anybody.Ìý And it made me think about my own personal safety – living on my own with my guide dog.Ìý And anyone could have just said I’m a policeman, I could be gullible enough to let them in and I thought that was really not a very wise decision to make.

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White

Did you expect him to have had an ID card?

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Snow

I did, I fully – I mean we are in the 21st century and it’s not an unusual demand, it’s a basic requirement and the police are always telling people to check people’s identity and if they can’t get it right.

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White

So, what is it that you would like to see introduced exactly?

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Snow

I would like to see a national standard across the country where all public professionals – doctors, police, social workers – have large print braille ID cards as standard.

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White

Now there are some examples aren’t there where something like this is happening.Ìý I mean what you been able to find out about what can happen?

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Snow

Okay, I’ve been working in partnership with Radio Solent and they’ve been very proactive with this campaign and they have found out, through one of their listeners, that the Met Police have had braille ID cards for the last 20 years.Ìý And when I have my meters read all the utility companies have a password system, which I’ve set up with them.Ìý So, arrangements can be made.

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White

But you make a distinction, don’t you, between utility companies and the police?

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Snow

Yeah, it’s not quite as easy for the police because you never quite know when they’re going to call – you never know when they’re going to call.

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White

So, how is the campaign going?

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Snow

What’s happening at the moment is that, in conversation with Jo Clark from the Hampshire Constabulary, they have a fairness and equality board which meets on the 19th December and at that meeting they will raise the issue of braille ID cards and then contact me with the outcome.

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White

Are you disappointed actually because, as you say, this happened in September, were you expecting a quicker response?

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Snow

I was expecting a quicker response but on a positive note for myself I met a local PCSO who was doing a patrol of the local community and she actually set up a password system for myself on the Hampshire Call Centre, on their computer, and I don’t know how easy it is, I just chose a password and she said – oh, it’s quite easy to set up.Ìý So, I don’t know whether anyone who’s visually impaired could ring 111 and ask their constabulary to set up a password for them, I’m not sure how feasible that would be.Ìý If everyone could contact their MP and ask them to actually pass a law to ensure that all ID cards were accessible, I’d be really happy with that.

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White

There is one point – wouldn’t it actually be a guard against forged ID if the police did have to have braille on their cards?Ìý You know, one more element to forge.

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Snow

Oh, I see, that would be all about the concern that people could actually forge braille ID cards?

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White

Yeah, well, a. concern but the recognition that it wouldn’t be that easy to do it, it would be an added protection in a way.

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Snow

It would be an added protection, it wouldn’t be that easy – I mean wouldn’t be that easy to forge them.Ìý And I guess also another added safeguard could be a – either the 111 or a telephone number direct to the police station, so you could verify who – so that would be another – that would be another safeguard if you had a telephone number on it.

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White

Yeah, so that’s the number that people can ring in order to find out if somebody has actually been sent there, for example, yeah, if it’s who they say they are.

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Snow

Yeah, so, if you weren’t sure that that braille ID card was genuine you could actually double check with a telephone call if you really weren’t sure about it.Ìý Or the other way, you could ask them to put their two-way radio – you know their radio on and hear them transmitting from the police.

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White

Yeah, which I guess is something that people could do anyway, that’s something you could have asked them to do.

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Snow

I could have, I never thought about it at the time.

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White

Tina Snow.

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So, will it take off?Ìý Well I have to say our initial enquiries aren’t too promising.Ìý The ³ÉÈË¿ìÊÖ Office referred us to the National Police Chief’s Council who said they’d like to help but spokespeople were too busy with election related issues.

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And that’s it for tonight.Ìý You can call us on 0161 8361338, you can email intouch@bbc.co.uk .Ìý And we really do want some more stories of how you met your match.Ìý Just to jog a memory or two, we’ll end with one last fateful meeting from Frank McFarlane.

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Music

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McFarlane

She and I met quite by accident.Ìý I was chairman of a local community council, she was on that council in some capacity and inevitably, I suppose, after one particular meeting we decided to go to the pub.Ìý Things happen in pubs.Ìý And I got talking to this lady, Julia, and I suppose some people will say well what drew you to each other, what was the spark.Ìý I’m not sure there was a huge spark, to be honest with you, we talked about all sorts of things, we didn’t talk much about community council stuff.Ìý I was a schoolteacher and she worked with the Midland Bank.Ìý I know one thing I said, I said – Well, I find banks are a damn nuisance and they want you to do this, that and the other and it’s my money.Ìý And we got talking about that.Ìý She will tell you that my sense of humour – my fourth form sense of humour – appealed to her, which I’m grateful for because I think a sense of humour is very, very important and she’s not got a bad sense of humour either.

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Music

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