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IN TOUCH – The Cost-of-Living Crisis; Cornea Transplant Delays

TX:Ìý 19.07.2022Ìý 2040-2100

PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌý PETER WHITE

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PRODUCER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌýÌý BETH HEMMINGS

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White

Good evening.Ìý Tonight, the appeal for people to donate their corneas.Ìý We hear from the patients who need them and why waiting lists continue to be so long.

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Clip

It was an anxious time for me because I knew that the only way to help me was to have a corneal transplant.Ìý I was losing more and more vision.Ìý The pain was getting worse.

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White

But, first, the subject that’s on everyone’s lips – the cost-of-living crisis.Ìý But does it have particular implications for visually impaired people?Ìý With double digit inflation upon us, only the very comfortably off remain completely untouched but some groups in society are harder hit than others – obviously the less you have the more you’ll feel the pinch.Ìý But the RNIB is arguing that even at the very best of times, visually impaired people have added expenses – public transport, assistive technology and the fact that it’s harder to spot bargains and money saving opportunities online, for example.Ìý

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Alex Ramzan is partially sighted and despite persistent efforts is unemployed.Ìý He joins us on the line.Ìý Alex, tell me about the effect of the cost-of-living crisis on you.

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Ramzan

It’s had quite a large effect on me.Ìý Having some vision, ideally, I’d like to have as much light in a room as possible but obviously due to the rise in prices I pretty much turn all my lights off during the day and I really only turn them on if I’m eating food.Ìý I am quite lucky that I know my flat relatively well and I know where everything is.

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White

And decent lighting is a crucial thing for you?

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Ramzan

Yeah, definitely for me.

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White

What other kinds of things?Ìý I think you have to use quite a lot of public transport?

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Ramzan

I do, I live in a city but I tend to use buses probably 50% of the time but the other 50% is obviously taxis and trains.Ìý I have had it where I’ve had to cancel, I’ve had to cancel things because I just can’t simply get there by cab, I just can’t afford the cab fare.Ìý And one of my roles with quite a well-known charity is I go in people’s houses and I help them with tech support and obviously I have to do train travel for that to get to where they are.Ìý Yes, the charity does reimburse me the cost of doing that but it does take a while, so I’m also out of pocket there as well.Ìý So, I’ve had to, you know, cut back by a fair margin.

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White

How much financial help do you get?

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Ramzan

So, I get a couple of benefits.Ìý I’m still on DLA…

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White

That’s Disability Living Allowance, just for those who don’t know.

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Ramzan

And I’m also on, I think, it’s called Employment Support Allowance or something like that.Ìý So, there’s help.Ìý It hasn’t been for lack of trying to find a job to do but as people will probably know it’s quite hard to find employment when you’re – when you have a disability, so I try to do the best I can.

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White

You mentioned the business about the lights, are there other things that you’ve had to stop doing, other ways of trying to keep your costs down?

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Ramzan

So, I have pretty much scrapped my Virgin TV completely, which is obviously a luxury.Ìý Obviously, I have to have broadband, I can’t be without broadband.Ìý I probably take maybe two showers a week, just to cut down on the water.Ìý I don’t dry my clothes in a dryer, I hang dry them now, which for me is a tad difficult because sometimes I can’t quite put them on the clothes horse, so that’s quite a change, where before I could just chuck them in the dryer and have no issues.

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White

One issue that is sometimes raised is the fact that there’s a lot of information now online about best deals, bargains, percentages off, the banks offer it, is that something which you feel you miss out on?

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Ramzan

As a general rule I think we do miss out on quite a bit.Ìý This could be for a variety of reasons, could be that the main deals, even the shop or the company offers, are quite low down the page, so if you use a screen reader it will take you an age to get down there.Ìý Quite often, even though these companies put things in what they think is large print it isn’t always in our terms large print.Ìý Also, things like colour could be a factor, so if a certain company uses a yellow background with black writing, that’s a big help but to keep in with their company branding they might not use the right colours.Ìý So, that’s also a factor.Ìý Normally, I think, websites, in general, are – some are just not accessible at all.

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White

Alex, stay with us.Ìý The RNIB has launched a campaign to draw attention to this.Ìý Listening to Alex has been David Aldwinckle, who is Director of Insight and Customer Voice at the RNIB.Ìý David, how typical are those points made by Alex?

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Aldwinckle

Sadly, Peter, it’s all too typical.Ìý We’re hearing from people day in, day out of the additional hardship, the extra costs of their disability but just the difficulties they’re having in making ends meet with the continuing spiralling prices that everybody’s facing.Ìý And we recognise that everyone’s facing this issue but we also have to recognise that a large proportion of blind and partially sighted people are living in the lowest income households, mostly on fixed incomes and so we’re hearing from people similar to Alex saying they’re not having their lights on, which is causing danger around the house, danger of trips and falls.Ìý We’ve got people who simply are cutting back on food and not eating as much.Ìý We’ve got people who are not making journeys and not getting out of the house, meeting friends, family and we all know the difficulties that caused during lockdown on people’s mental health.Ìý Alex, it’s great that you have to keep your broadband, it’s incredibly important that people stay connected and still can use those digital devices that make so much of our lives doable and give us so much independence.Ìý But we’re seeing a lot of people having to make the choice that they’re choosing food over that connectivity and giving it up.Ìý Even down to things like the tips of their white canes are wearing out more frequently and the supposition is that whilst the price isn’t necessarily going up, they maybe being made of less robust material and so need to be replaced more often.Ìý

We’re hearing it particularly on our social forums and it’s causing quite a conversation, shall we say, it does seem to be a growing common experience.

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White

Just on the other side of this, David, on the issue of benefits, visually impaired people are amongst those disabled people who are eligible for Personal Independence Payments or Disability Living Allowance, which Alex mentioned.Ìý Those benefits are specifically designed to meet the added costs of daily living.Ìý Aren’t the government entitled to say that that is where they recognise the added costs of disability?

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Aldwinckle

They can say that and to a degree we would agree.Ìý You mentioned the rate of increase in April, it was 3.1% and that was already below inflation.Ìý We all know what the inflation rate is now.Ìý So, in real terms that benefit has been cut.Ìý So, one of the things we are doing with the campaign is calling for an urgent reassessment of benefits, so that they are uprated in line with the current inflation figures.Ìý And the government have already said that they will uprate in line with the inflation figures in September but that won’t come through till April, so until after we’ve had this winter where people will be facing massively increased heating bills, on top of what they’re already paying.Ìý

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And if I can add the other call we’re making on government, is to reverse some of the changes they’ve made to the Warm Â鶹ԼÅÄs Discount Scheme which will open, again, in October, I believe.Ìý But through some of the changes they’ve introduced quite a significant number of blind and partially sighted people now will not be able to receive that one off £150 grant when previously they would have done.

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White

I mean last week the Minister for Disabled People, Chloe Smith, was asked by Labour MP Kerry McCarthy what her department was doing to offer help specifically to disabled people.Ìý This is what she said:

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Chloe Smith MP

Mr Speaker, six million people receiving an eligible disability benefit will receive £150 disability cost-of-living payment as well as the £400 energy bill discount.Ìý Many will also be eligible for the £650 cost-of-living payment for lower income households, the first instalments of which are being paid this week.

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White

So, the government are saying that they are making specific provision for disabled people there.Ìý What is your answer to that?

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Aldwinckle

Well we clearly welcome any help that’s offered.Ìý I think the thing that we would say in response is that that’s a one-off payment and this is an ongoing situation.Ìý I think I’m right in that Martin Lewis recently said that the best projection on the increase in heating and energy in October will be 64%.Ìý So, already that money has gone and that’s only on heating.

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White

I mean if people are having problems, I mean what kind of help is the RNIB, itself, offering?

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Aldwinckle

So, we’re trying to offer as much help as we possibly can.Ìý So, we’re seeing that people are giving up their technologies, so we’ve expanded our grants for technology scheme, to try and make sure that people don’t lose that lifeline.Ìý And we’re trying to work on other more practical help, so we’ve just loaded a page onto our website which tries to summarise the various mainstream supermarkets and the types of deals that they are offering, so that people don’t have to try and navigate through a whole load of other information in order to find the best value for some of the basic items that they’ll be looking for every week.

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White

Just a final word, Alex, I mean how are you viewing the next few months?

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Ramzan

Hopefully, I will personally manage.Ìý I am worried about the winter, the winter months.Ìý I do have a guide dog, also, so I’ve her to consider as well but we’ll just do the best we can and just hope that something comes into place by the winter.

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White

Alex Ramzan, David Aldwinckle, thank you both very much indeed.

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Well, since that interview with David we have had a statement from the Department for Work and Pensions.Ìý They say: “We’re committed to ensuring disabled people, including those with visual impairments, receive the financial support they need, as quickly as possible.Ìý Through our £37 billion support package, we’re protecting eight million of the most vulnerable families with at least £1,200 of direct payments this year.Ìý And disabled people will receive a separate £150 top up.

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Now the cornea is a very delicate part of the eye, essentially the surface through which you see, so that if the cornea becomes scarred or damaged in any way, then the images you see are increasingly blurred.Ìý The cornea can be replaced and the effects can be dramatic but a persistent problem has been that the supply of donated corneas doesn’t keep up with demand.

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Well, we’ll be talking about why not in a moment but, as I said, the results of a successful cornea transplant can be dramatic.Ìý Shelly Hague has good reason to know this.Ìý Shelly, just explain what happened in your case when you realised that you had a problem.

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Hague

So, I started having sort of a rapid deterioration with my vision in early 2018.Ìý I had various appointments with our local eye hospital and I was diagnosed with a condition called polymorphous corneal dystrophy, I believe is quite a rare condition.Ìý It was very debilitating, so my vision did change quite quickly – I could barely see from my right eye.Ìý I had quite a lot of pain.Ìý It started affecting me going out.Ìý I would avoid sunshine, sort of windy days, things like that because the pain was awful.Ìý I was diagnosed with this and put on a waiting list for a corneal transplant.Ìý That was supposed to take place, I think, in March 2020, however, because of covid that was put on hold.Ìý I then had two further dates rescheduled because quite rightly there is a lack of a corneal donors.Ìý It was an anxious time for me because I knew that the only way to help me was to have a corneal transport.Ìý And it was getting worse as well – I was losing more and more vision; the pain was getting worse.

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White

And there were increasingly things presumably over that period that you couldn’t do?

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Hague

Definitely.Ìý I gave up driving, I would only drive if I absolutely had to.Ìý Because I had one eye I could still legally drive but I would stop because I have a young child at home.Ìý I wouldn’t do sort of family days out because the pain would just increase.Ìý Yeah, it wasn’t nice at all.

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White

Now describe the effects of when you actually had the operation.

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Hague

It was immediate.Ìý I had a lot of nerves going into the operation but coming round from the anaesthetic I could see.Ìý Beforehand, the best way I can describe it is it’s like someone had put Vaseline over my eyes, I could only see shadows, maybe a bit of light and I could see straightaway, from opening my eyes waking up.Ìý And it was very emotional, it was.Ìý One of the things I particularly remember following my surgery is being able to lie there with my young daughter, I was watching her sleep and realised that I could count the eyelashes on her eyes and it’s little things like that that have dramatically made a difference since having the transplant.Ìý And it’s just got better and better and now I’m almost two years post-op, if you like, now, and I have gone back to doing everything that I used to be able to do.

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White

Shelly, stay with us.Ìý Also with us is Kyle Bennett, who’s Assistant Director of Tissue and Eye Services at NHS Blood and Transplant.Ìý I mean clearly, Kyle, that’s a very heartening story but surely the problem with the delays is the fear that perhaps some permanent damage might be being done while you’re waiting.

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Bennett

Absolutely, absolutely.Ìý The demand for corneas is probably at an unprecedented high.Ìý There was a pause during covid in surgery taking place which has led to more people joining waiting lists for corneal transplants and, as you said, at the beginning of the conversation, we are really struggling to meet that demand when we’re simply not getting enough donors to meet the demand that is out there for corneal transplants within the UK.

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White

I mean how serious is the mismatch between the corneas you need and the corneas you’ve got, can you put numbers on it?

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Bennett

So, at the moment, we need probably 10-15 corneal donors per day and we’re averaging six to seven, so we’re probably running at about 50% of what we need.

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White

And is it possible to say how long the waiting lists are?

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Bennett

Difficult to put a time on that because it’s not just officially availability, so the theatre time in hospitals and it varies based on patient to patient.Ìý I’ve heard reports that some patients are waiting up to a year but I haven’t got the exact data I’m afraid.

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White

This is interesting and I’d like your comments on it.Ìý One in 10 people on the NHS organ donor register have indicated that they don’t want to donate their corneas, making corneas the part of the body that most people, the majority of people, say they don’t wish to donate.Ìý But why do you think that is?

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Bennett

I think it’s a cultural thing within the UK.Ìý You often hear people say – you can have – donate anything after I’ve died except my corneas, I need to be able to see.Ìý So, I think it’s very much a cultural thing.Ìý I think there is a lot of education that is needed for the benefits of corneal transplant.Ìý As Shelly’s indicated the transformation it makes to people’s lives is huge.Ìý So, I think the more training and education we can do with the population to increase their awareness of the corneal donation and the benefits of corneal donation certainly to the recipients the better.

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White

But you do think it’s a kind of a psychological thing, in a way, the idea that the eye perhaps is so much a part of – perhaps reflects your personality to people?

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Bennett

Absolutely, absolutely, I think when we take consent for tissues, whether it be for corneas or whether it be for bone or something else, a number of families will say yes to consent for other tissues but no to corneas.

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White

I mean other than education, which of course is often a long process, is there anything else you think practically that can be done to deal with the mismatch?

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Bennett

There’s been quite a change in end-of-life pathways, as we’ve seen through covid, so more than 50% of people now die in their place of residence, whether that be a care home, their home or in a hospice and don’t die in hospitals and most of the potential donors that are referred to us for corneal donation are referred via hospitals.Ìý So, we’re frantically trying to adapt and change our systems to enable us to access those donors or those potential donors that now don’t die in hospitals.

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White

Just finally going back to Shelly, what would you say to people who perhaps might be considering organ donation that perhaps could have an effect on their decision?

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Hague

I would say don’t hesitate, please just do that.Ìý Knowing what I know now, if I could I would donate my corneas, obviously I can’t, I wouldn’t hesitate in doing that, it does – it dramatically changes people’s lives.

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White

Shelly Hague and Kyle Bennett, thank you both very much indeed.

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And that’s it for today.Ìý Do contact us with your comments and your queries, you can email intouch@bbc.co.uk, leave your voice messages on 0161 8361338 or go to our website bbc.co.uk/intouch.Ìý From me, Peter White, producer Beth Hemmings and studio managers Colin Sutton and Simon Highfield, goodbye.

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