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IN TOUCH – Missed appointments, Moving house

TX:Ìý 20.04.2021Ìý 2040-2100

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PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌý PETER WHITE

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PRODUCER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌýÌý SIMON HOBAN

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White

Good evening.Ìý Tonight, the missed eye appointments which could be leading to avoidable loss of sight.Ìý And making a move but how do you know it’s the right one?

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Clip

So, yeah, we did start by labelling everything but then, of course, you know what it’s like, braille goes flat if things rub up against it or the labels fall off.

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White

More from Denise and Stefan later in the programme.

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Now ever since the first coronavirus lockdown we’ve heard a good deal about the development of remote eye examinations, using digital technology.Ìý Well, this has enabled some patients, with conditions such as macular disease, to have their eyes monitored without having to stir from home.Ìý But, despite this, the Macular Society is reporting alarming news of appointments missed and sight lost as a result.Ìý According to the charity, scheduled and attended eye appointments are down by as much as 35% during the pandemic, compared to 2019.Ìý And they believe people will have lost their sight because of missed appointments in the last year.Ìý

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Well, Cathy Yelf is the society’s Chief Executive, we’ll be hearing from her in a moment but we can speak, first, to Sandra Orlando, who has the form of the condition known as Wet AMD.Ìý Sandra, I mean, tell us about your own situation.

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Orlando

Well, yes, I’ve had Wet AMD for probably six or seven years now.Ìý My condition had been stable, so I hadn’t needed any injections but I still went every month for a check-up.Ìý February of last year, I got a phone call from the clinic saying because of the covid epidemic they wouldn’t be seeing patients who didn’t actually need the injection so, my appointment was cancelled.Ìý Which I was okay with, I wasn’t having any problems at that stage.Ìý However, only two maybe three weeks later I did start to notice a deterioration in my left eye.Ìý So, I called the hotline for the clinic, I was told that I couldn’t visit my normal clinic, Bridlington, but they could get me an appointment in York.Ìý So, okay, that wasn’t a big problem.Ìý I went to York but of course they didn’t have my records in York.Ìý And they tested me, they did all the regular tests and said they didn’t – they didn’t see that I needed an injection and sent me home.Ìý

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Unfortunately, the condition continued to deteriorate, so I phoned again and this time I did get a local appointment and quickly got an injection but by then the damage has been done, it was irreversible.Ìý With the result that my left eye now is pretty much useless for close work, I can’t read with my left eye any longer.

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White

So, in your case, it wasn’t fear of catching coronavirus and not going to an appointment that meant that you had a problem, it was just the delays that took place.

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Orlando

Yes, yes, that’s absolutely true.

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White

And what’s the situation of your eyesight now?

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Orlando

Well, I’m back having regular injections.Ìý The injections don’t reverse the condition, they just slow down the deterioration.Ìý So, my left eye will never be any good for reading anymore.Ìý I consider myself quite lucky because, up till now, my right eye’s not affected, so, it’s an irritation, it makes it more difficult to read and do close work but my general day-to-day activities are not badly affected.Ìý My big fear, of course, is that eventually my right eye will become affected, at which point I will be, to all intents and purposes, blind.Ìý It’s not like all the lights go out, it doesn’t go dark but everything is badly distorted, so, you can’t see to read, you can’t watch television, can’t read your bank statements, so you can’t manage your financial affairs, if you go to the supermarket, you can’t read what’s on the tins and the packets.Ìý You can’t even – even making a cup of coffee, you’re not sure when the hot water’s got to the top of the mug.Ìý So, like I say, at the moment, I’m okay but if my right eye becomes affected then I will be in trouble.

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White

Sandra, thank you very much for joining us.

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Cathy Yelf, of the Macular Society, your figures show that around a quarter of people missed their appointments.Ìý I mean do we know how many were cancelled or delayed, like Sandra’s and how many didn’t go because of covid fears?

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Yelf

Well, we think, that overall, there was a fall or the number of appointments were down about 35% but within that there are other figures.Ìý So, new referrals fell, on average, by more than 70%, more than 70%.Ìý And that was because, of course, optometry practices, opticians in the high street, were shut, of course, in the first part of the lockdown and that meant that people weren’t going for routine appointments and the macular degeneration wasn’t being picked up.Ìý But we also know that many people were frightened to go and we had many, many calls to our advice line with people very distressed saying – I don’t know what to do, I’m in an older vulnerable age group, I’ve been told by the government to stay at home, my life is at risk if I don’t stay at home but if I don’t go and have my appointment my sight’s at risk, I don’t know what to do.Ìý This was a terrible dilemma for people.Ìý So, normally, patients with Wet AMD are very, very good at turning up for their appointments but we think at least a quarter didn’t turn up and they were the people only who had urgent treatment.Ìý So, because of social distancing and because of staff shortages in eye clinics, where staff were pulled off to work on covid wards, only the urgent people were being called in anyway and a quarter of them didn’t turn up.

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White

Right, now we have been talking on the programme quite a lot about this idea of examination – remote examinations and indeed I think there is an example of that at Moorfields with macular disease.Ìý Is this only picking up a very few people at the moment?

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Yelf

Yes.Ìý So, the way in which active macular degeneration is diagnosed is by an eye scan, you have to have an eye scan.Ìý And we don’t, at the moment, have a good home monitoring system.Ìý There are lots of them in development and this would be an absolute revelation, if we could do this it would be absolutely marvellous but at the moment, we can’t really diagnose anything other than really quite symptomatic disease over the telephone.Ìý So, it’s useful to have conversations and I’m sure doctors can divine a lot from those conversations with patients but really the holy grail of this is to have a really good quality home monitoring system.Ìý And there is a new website called See What’s Next, which is part of a campaign that has been – we have worked on with a drug company called Novartis.Ìý The See What’s Next campaign is aimed at people with Wet Macular Degeneration, particularly, specifically to help them manage the condition better and more successfully.Ìý And this is particularly important, of course, at this moment when so many people are in Sandra’s position – have missed appointments – and will have increased sight loss as a result.

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White

Cathy Yelf, thank you very much for joining us and, of course, before that you heard Sandra Orlando, thank you both.

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Now, we’ve been asking you on the programme about this giant amongst stress causes – moving house.Ìý Well Karen Visser was one of those who got in touch with us, she’s got degenerative myopia and glaucoma and has moved house during the pandemic.Ìý Just tell us about your approach to moving house because you’re coping with it, presumably, with deteriorating eyesight as well.

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Visser

Peter, I’m quite organised and rather systematic.Ìý So, I plan everything in advance, order boxes and know where I’m going to put the boxes and how I’m going to list them.Ìý And also, I store them in a way, almost like a library, so if I need to find something again, I can go back and find them.Ìý That said, it takes up an enormous amount of time and physical energy.Ìý So, I would prefer to not repeat this exercise too soon.Ìý However, saying that, what I have registered is the significance of being nearer my eyecare, so, in fact, I have barely unpacked my boxes and I am now looking to return to where I can be closer to my eyecare.

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White

And just one thing Karen, were you always organised when your sight was okay or have you become more organised as it’s begun to deteriorate?

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Visser

I was born with severe myopia and I think that certainly has an impact on looking at things close up.Ìý So, I have been quite an organised person to the point that I think some people thought, until they realised that I had severe myopia, that I was quite pedantic.Ìý But it’s actually a way of seeing my surroundings.Ìý And, as I always say, what you can’t see you can’t necessarily always remember it’s there unless you have other ways of organising things.

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White

Well, I think, we’re going to get some more examples of that, it’s quite a good way of putting it, because finding an expert on moving house, when you’re blind, is also quite a challenge but, as usual, the In Touch rule holds good – find a blind person who’s done it a lot and put them on the programme.Ìý We’ve gone one better, we’ve found two.Ìý Since getting together professional musicians Denise Leigh and Stefan Andrusyschyn, have already moved three times together, plus their work, when they were allowed to perform all over the place, meant, I imagine, that you often had to move half your belongings, if not all of them.Ìý Denise, just to come to you first, if you have to move, when you’re thinking about it, as a blind person, what are the most haves for the place that you’re going to?

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Leigh

Good public transport, which is the reason we moved in 2010 into – because we’re in a very rural area.Ìý I’d been in the same house since 1997 and then Stefan moved in with me and we decided that as a blind couple, we could do with having better public transport.Ìý So, we moved to a bigger town, just over the county boundary in Cheshire.Ìý And, in fact, we never settled and the public transport deteriorated while we there – maybe we’re jinxed – and so, we ended up moving back to the same street we’d come from, in the village that I was born in.Ìý So, that was partly because we’d had Demetri in the meantime and we needed to be registering him for schools and things like that, we had huge decisions around his schooling.

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White

Demetri’s your son of course.Ìý Can I just ask you, bring in Stefan, when you were going to somewhere you hadn’t been to before, did you actually case the joint, did you stake it out to find out or did you take a bit of a chance on it?

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Andrusyschyn

I think it is true to say that when you move to a new location it is – it’s a lot harder.Ìý There’s infrastructure that needs putting into place, whether that be from Guide Dogs, if you’re a guide dog user, or the local mobility team if you’re a cane user.Ìý It isn’t easy and I think it takes a lot of time to re-acquaint yourself with a new area.Ìý And I think if you don’t have the enthusiasm and the drive to stay there long-term, I think, what we discovered, is that the wish to learn new places, especially if you’ve always got in the back of your mind what things were probably better where we were or somewhere different sort of niggles away at the back of your head and you just – you lose that sort of drive.

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Leigh

You lose the motivation, you definitely lose the motivation.Ìý One thing I can definitely not recommend really, but in our case it worked as a positive, was obviously, when you’re selling a house or you’re looking to rent a house, there are viewings involved and we’d had – we’d put our house on the market in the autumn of 2014, when we were moving back to the village we’re in now, and we’d had quite a few viewings which means sort of bottoming out the house all the time, making sure it’s tidy, having a minimalist approach to furnishings and…

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Andrusyschyn

Bake bread and make coffee, do all the things…

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Leigh

All that, light the fires, all that sort of thing.Ìý What I wouldn’t recommend is having a lump of poo in the middle of the carpet – oh god.Ìý Just before the viewers came on Saturday morning, we’d been up since about half past five, Demi, who was at the time not two, did a nasty nappy, a really bad nappy and I said to Stef – this one’s yours.Ìý So, off he went to change him in the front room and the viewing happened and it was really positive, it was a lovely couple with a child and they were so keen.Ìý And then my sons – my older sons – came back from their visit with their dad and Sam said – Mum, have you had the viewing?Ìý And I said – Yeah.Ìý And he went – Oh god, please tell me that poo wasn’t on the carpet when they came.Ìý And there was a little…

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Andrusyschyn

We’d had an escapee.

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Leigh

Escapee from the nappy.Ìý But, they put an offer in on the house!

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Andrusyschyn

And we said to them if you offer us the asking price we’ll clear – we’ll clear the escapee away as well. [Laughing]

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White

Not to be recommended, even if you got away with it.Ìý I want to ask…

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Leigh

We got away with it, yeah.

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White

I want to ask you about the – I mean just packing up, the whole business of packing up your whole house and starting – starting again.Ìý I mean, how difficult – I’ve got horrible memories of doing that.Ìý I mean do you label everything?

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Leigh

Well, that’s the theory.Ìý We’re nothing like as organised as Karen sounds.Ìý We did start by putting braille labels on things and stuff like that and then I accidently lost the embosser – I think I must have thrown it in the skip or something like that, I don’t know…

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White

This is a braille embosser?

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Leigh

A braille embosser, yeah…

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White

Quite an expensive bit of kit really.

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Andrusyschyn

Quite a big bit of kit to lose as well.

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Leigh

I don’t – I just still don’t know, it’s one of the great mysteries of our house moves.Ìý So, yeah, we did start by labelling everything but then, of course, you know what it’s like braille goes flat if things rub up against it or the labels fall off.Ìý So, in theory, yeah, we’d got a really organised system.Ìý We’re not particularly organised people for saying we’ve moved so many times.Ìý What you need is tonnes and tonnes of flatpack boxes, loads of parcel tape and just to live on as little as possible for as long as possible.Ìý So, as soon as you know you’re moving pack all the bits up that you’re not using particularly, like keep out as many plates as you need, as much cutlery as you need, pack everything else away so that you’re ready because we sold before we’d bought, so we had to move and then move again.Ìý We moved everything into storage and lived in Travelodges and did house sitting in Skelmersdale and things like that and we went to Blackpool for a week.Ìý So, we were five weeks with a guide dog and a baby on the road really between houses.

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White

That sounds pretty horrendous.Ìý Can I just ask you about the move – because you’re both musicians and I’m just wondering – you must have a lot of delicate equipment, I mean Stefan, have you had any horrors with that?

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Andrusyschyn

No.Ìý

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Leigh

We stored the instruments at friends’ houses, we didn’t risk storage with them.Ìý And we never risk putting them – we never risk putting – I’m so glad we don’t risk putting them on the removals van because the last time we moved ourselves and we had my best friend, who was driving, and we’d forgotten we’d left a TV in the back of the van and I think he applied the brakes a bit hard or used the handbrake something, we skidded and we heard bang in the back of the van and both mouthed a swear word at each other and went to the back of the van and there was a deconstructed TV in the back of the van.Ìý It could easily have been the accordion or the electric piano.

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White

So, you’ve had a lost embosser, you’ve had a smashed TV, you’ve had to move from Travelodge to Travelodge.Ìý You have had problems.Ìý I’m just wondering what advice you would – what have you learnt from those experiences, have you got a tip each for people?

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Leigh

My tip would be use these online checklists because there are always going to be things that you forget to do.Ìý I know it’s boring but making sure that you are registered with the electoral roll and that you’ve got your water sorted out, you know that you’ve done everything you need to do – changed over all your banking and everything like that – because that can be a real pain if you forget to do something.

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White

And clear out the nappies of course, as well.

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Leigh

Oh, just don’t let Stef change a nappy before the viewers come.

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White

Stefan, favourite tip?

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Andrusyschyn

If you can avoid doing it, don’t do it.

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White

Actually, that’s probably the best tip of the lot.Ìý Let’s just go, very quickly, back to Karen and say – has that put you off or made you more determined?

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Visser

Made me more determined to get it over with as soon as possible and particularly, with viewings in the times we’re in now.Ìý Doing viewings at the moment and not being able to touch things is quite a challenge.

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White

Karen Visser thank you very much for getting us started and Denise and Stefan, thank you for giving us so many things to try to avoid.Ìý Thank you both, thank you all.

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And that’s it for today but do contact us about anything that you’ve heard in the programme or, indeed, things you haven’t heard but think you ought to have done.Ìý And in particular, as restrictions ease on where we can go and what we can do, we’d like to know how your facing freedom.Ìý Coping with being blind or partially sighted depends so much on confidence, has lockdown taken some of yours away or can’t you wait to get out there again.Ìý Do let us know.Ìý You can email intouch@bbc.co.uk or go to our website bbc.co.uk/intouch, from where, among other things, you can download tonight’s and previous editions of the programme.

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From me, Peter White, producer Simon Hoban and studio managers Owyn Williams and Mark Ward.Ìý Goodbye.