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TX:听 25.02.20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 LOUISE CLARKE-ROWBOTHAM

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White

Good evening.听 Tonight, the excess protein which could be a key to one of the major causes of blindness in the UK.听 And who wouldn鈥檛 want their sight restored?听 Well, not the leading character in this play for one.

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[Sigh].听 So, you鈥檙e used to it, you know your sight, but I鈥檓 not, you know I can鈥檛 stop seeing every little detail of every little thing.

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White

Well, we hear from the playwright who thinks that you could even miss your blindness.听 And鈥�

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Government Transport Campaign

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We can do better than that.

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Can鈥檛 we?听 So, just a tad, a smidge, it鈥檚 nicer wouldn鈥檛 you say, you see a little consideration goes a really long way.

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Remember, it鈥檚 everyone鈥檚 journey.

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White

Well, as part of the government鈥檚 ongoing inclusive transport policies, Transport Secretary Grant Shapps is today launching the 鈥淚t鈥檚 everyone鈥檚 journey鈥� campaign, as part of a plan to make the UK a world leader in accessible travel and the message 鈥� everyone can help make disabled people鈥檚 travelling easier.听 So, what will this mean for visually impaired travellers?

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I suggested to Grant Shapps that from my own experience and a lot of visually impaired people I talk to on this programme, the public are often very helpful and it鈥檚 more often lack of announcements on buses and trains, inconsiderately parked cars and pavement clutter and ill considered space sharing schemes in city centres which make things difficult for blind travellers.听 So, why this campaign to put the responsibility on to the public?

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Shapps

So, what we鈥檙e doing today is actually launching effectively three different campaigns.听 One is to just help to sort of alert the public to and maybe make people a bit more, you know, recognising the issues.听 One in four people with disability do say that they fear perhaps the attitude of the rest of the travelling public puts them off.听 But the other two things we鈥檙e doing are schemes to accredit transport providers, so that they get a sort of 鈥� really a bronze, silver, gold sort of accreditation type scheme that they can apply to for the quality of their accessibility.听 And then actually tomorrow there鈥檒l be 124 stations which will announce are actually getting upgrades.听 So, this is a whole variety of different things.听 But I do think education is part of that package for visually impaired people.

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White

You鈥檙e announcing 拢20 million for more than 120 railway stations, what is this money to be used for?

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Shapps

So, these are, what we call, the mid-scale sort of upgrades.听 So, it could be the sort of thing that I鈥檝e actually been seeing here at London Bridge this morning, which is just a section of the platform which is raised so that it鈥檚 possible now just to get straight in, without having that step, which causes a major trip hazard for people into the train itself.听 So, there is a very, very good example of a sort mid-range thing that you can do but massively improves accessibility.听 But it could be a whole bunch of other things as well, including things like facilities, could be disabled loos, but also things like announcements to ensure that people know what鈥檚 going on, where they should be standing, those sorts of things.

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White

Because that business about clearer announcements, it can be a real problem and the fact that announcements often are 鈥� sometimes they鈥檙e not made, sometimes trains are changed from platform to platform without letting people know.听 That kind of thing can really put people off.

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Shapps

We鈥檝e got, obviously, a transport system, parts of which were built in Victorian times and they just didn鈥檛 put a moment鈥檚 thought to these things seemingly.听 And one of the things to do there is to make the trains reliable, well that applies all round, the other thing to do is to make sure 鈥� I mean if you are, for example, visually impaired, that you reliably get the same messages every time, rather than you might hear a message but on other occasions they just don鈥檛 bother to play it.听

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White

There is the issue of design.听 On In Touch, only last week, Birmingham New Street got a bit of a going over on our programme as being very difficult to navigate, since its renovations.听 So, this was an example where, perhaps, money had been spent but not rightly.听 One listener spoke for many when he said: 鈥淚t鈥檚 sad that so much was spent on the refurbishment of New Street and yet the old New Street worked better for visually impaired people.鈥澨� How can you be sure the investment is going to address the right problems?

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Shapps

Well, I think the first thing is to learn from lessons like that, to be perfectly honest.听 I think, you know, nowadays, it should be at the forefront of everybody鈥檚 minds.听 The whole of society, including the designers, the policymakers and everyone, needs to be thinking about these things.

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White

Can I ask you specifically about buses because actually more people use buses than trains and visually impaired people use them a lot because we can鈥檛 drive cars in the city?听 Now the government did recently announce 拢2 million to encourage smaller bus companies to introduce audio equipment on the fleets but isn鈥檛 the real problem a lack of buses, full stop.听 According to the campaign for better transport cuts to 3,000 bus routes with rural areas especially hit in the last 20 鈥� well, 2010 to 2018, now that鈥檚 on your watch.

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Shapps

Actually, much, much more money - 拢220 million initially already announced and then 拢5 billion that we鈥檝e just, on the same day as HS2, announced is going to go into really transforming our bus services throughout the country.

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White

But was it a mistake to let them deteriorate in this way over the last 10 years?

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Shapps

Well, I鈥檒l stick my neck out and say that we were living in different times when stopping the country from going bust seemed to be the only 鈥� you know austerity and all of that stuff, the deficit.听 But I think now is the time to build things up.听 We鈥檝e done that bit and now we are into making sure we have the infrastructure and the ability for people to come round, levelling up, as we say.

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White

The trick is not just the trains and the buses but the getting to them, in other words the streets and we probably get more complaints about things like shared spaces schemes than anything else on this programme.听 Are local authorities being actively discouraged from going ahead with these space sharing schemes between pedestrians, cyclists and cars because we鈥檝e got the evidence that many blind people hate them and that鈥檚 what鈥檚 getting them to stay out of city centres?

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Shapps

Yeah, I think these things are of concern and you mentioned something before, earlier, which is cars parked on pavements and I can let your listeners know that I will be very shortly saying some more on exactly this subject because I think that it is right that people should be able to have an expectation of being able to step out 鈥� outside their homes on to the pavement and being able to reasonably walk down that pavement.听 Now, we鈥檙e some way from that, I appreciate, and I鈥檒l be saying more about it very soon.

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White

We鈥檒l look forward to that and that鈥檚 the Transport Secretary Grant Shapps.

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Now, FHR4, it may not be the catchiest name on the block but it turns out that the protein which bears it can do a great deal of damage if you have too much of it.听 A team of scientists believe that there鈥檚 now compelling evidence that high levels of FHR4 in the blood is found in people who have developed macular disease, the biggest cause of blindness in the UK.

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Professor Paul Bishop, from the University of Manchester, is part of the project鈥檚 leadership team and he told me more about their findings.

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Bishop

We analysed blood samples from people with Age-Related Macular Degeneration and people who didn鈥檛 have it and we found that there were increased levels of a protein called FHR4 in people who had Age-Related Macular Degeneration compared with those who didn鈥檛.

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What we know now is that in terms of risk of getting AMD, there can be environmental risks, of course we know that smoking鈥檚 important, diet 鈥� being overweight 鈥� but actually genetics is also very important and that鈥檚 why we were interested in looking at this particular protein because it related back to some earlier genetics that suggested that it could possibly be involved.

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White

So, effectively, what you know is that this protein was there before people developed macular degeneration, not as a result of it?

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Bishop

What our supposition is that a genetic alteration caused the levels of this protein to change and, as you say, it may well be that they had changes in that level before they actually got the condition.

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White

So, what are the implications of what you鈥檝e discovered?

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Bishop

One of the things that鈥檚 interesting about it, I think, is that this protein is not actually made in the eye, it鈥檚 made in the liver and so it comes from our liver, goes into our circulation, ends up in the eye and that鈥檚 where it does damage.听 We know a little bit about the protein and we know that it induces inflammation, so, we鈥檝e got a new type of understanding of the condition, I think that鈥檚 the first thing to say.听 The second thing is that already we can do a certain degree of predictive testing, so, just using genetic analysis we can predict to a certain extent whether people will get the condition in the future or whether it will progress in the future and actually doing听 a blood test to measure the protein, rather than just looking at the genes, may help us be more accurate in our predictive testing.

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White

Now, it鈥檚 one thing knowing what causes it, even if you do decide that it鈥檚 definitely genetic, what will it enable you to do, particularly in terms of people who perhaps have got this condition at the moment or know that they鈥檙e likely to get it?

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Bishop

You know it may point the way towards new types of treatment.听 Probably thinking about treatments rather, that prevent people from getting the condition or maybe in the early stages of the condition prevent it from getting worse.听 And so, it鈥檚 possible now with our new knowledge of the genetics and now the biochemistry to start to design different types of treatments that may help people in the future.

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White

That鈥檚 Professor Paul Bishop.

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Well, the Macular Society told us that while still in its early stages this is a promising discovery which may result in a new route of diagnosis through blood tests that could potentially lead to new treatments for patients living with Age-Related Macular Degeneration.

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You can hear the caution there, justified by the fact that until now getting sight back, which has been lost, has been a very rare occurrence.听 Which is why when it does happen the media is inclined to yell 鈥� Miracle cure!听 Well, that was the original title for a new television play written by blind playwright Mandy Redvers Rowe.听 It鈥檚 been re-christened 鈥淪econd Sight鈥�.听 It explores some unexpected consequences when the main character, Vicky, has a sight restoring operation.听

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Well Mandy Redvers Rowe has already written a radio play 鈥淏lind School鈥�, based on her experience of losing much of her own sight at the age of 16.听 I asked her what had made her choose this as the subject for her drama.

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Rowe

Well, I鈥檓 a writer, so, I鈥檓 always looking for an interesting storyline and I think one advantage I have, as a writer, over many other writers, not all other writers, is my direct experience of disability and in particular sight loss.听 So, there was lots of 鈥� a few articles about people getting their sight back and it did make me think what would really happen, is it really the solution that a lot of people think that it should be.

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White

Well 鈥� because at one point in the play husband Barry says to Vicky 鈥� it鈥檚 something we鈥檝e always dreamt about.听 So, I wondered is getting back your sight something you鈥檝e dreamt about?

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Rowe

My experience was having a lot of operations to save my sight or to restore it and eventually none of them worked and I lost my sight, in steps, sort of after that, with no option of restoration.听 And I think in those early days I鈥檇 been almost trained to look for or hope for sight coming back.听 And then there鈥檚 a point at which I got to where I went 鈥� okay, that鈥檚 not going to happen now.听 And then I moved on and then my life got better because I allowed it to go.听 So, no, I don鈥檛 spend any time really thinking about wouldn鈥檛 life be different if I could see.听 But a lot of people expect me to be thinking about that.

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White

Do you think that most people would be astonished to find that people didn鈥檛 jump at the opportunity to get their sight back?

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Rowe

Yes, I think it鈥檚 that whole thing that people with sight or sighted people just cannot understand a world without sight and assume that that lack of sight makes our life much less of an experience or an interesting experience.听 But, of course, we know it鈥檚 not like that at all, we just live, we just don鈥檛 think about not seeing but we do things differently.

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White

But when it came to getting your sight back and given how rarely it happens, where did you get your ideas of what it would be like, for example, the idea that just having a sense of perspective would be difficult, going down steps would be difficult 鈥� that kind of thing?

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Rowe

Well, I just reversed losing sight.听 [Laughing] So, those are all the things that became difficult when you couldn鈥檛 see properly.听 In the same way that when I first was partially sighted perspective did lots of tricks on me where I could see some things but not others.听 I thought that would similarly continue when you got sight back.听 So, I just imagined a lot and just thought it through that if you鈥檙e not used to sight, if your brain鈥檚 not used to sight, you鈥檝e got to retrain everything and it might or might not be possible to do that but it would be suddenly a huge overload.

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White

You went to some lengths in the play to make sure that before Vicky had her operation she should look like a confident happy blind person.听 Just tell us some of the things you did to try to make sure that, for example, the actress got that who played it because it鈥檚 not played by a blind actress is it?

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Rowe

No, it鈥檚 Kasey Ainsworth, who is absolutely amazing.听 As a writer you have nothing to do with casting, you don鈥檛 know who鈥檚 being cast or who鈥檚 being auditioned and you have no input in that side at all.

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White

But after she was cast you went to some trouble for her to get it right, didn鈥檛 you?

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Rowe

I did, yeah.听 So, after she was cast, I was anxious that visually we showed, as accurately as possible, somebody who was blind and confident blind person.听 And so, I invited her and the director, we had a whole gang of people come to my house because most of the scenes where she鈥檚 blind are in her own home, and I just explained that a blind person in their own home operates completely differently from when you鈥檙e in a strange environment, you know, where you鈥檙e not confident.听 In an environment where you are confident you move very differently and very confidently.听 I thought they needed to see that.听 We laughed a lot about it 鈥� whatever I went to do she went 鈥� I鈥檓 following you, I鈥檓 following you now, I鈥檓 watching everything you do.

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White

There are some very thought provoking moments in the play and one that stopped me in my tracks was when Vicky, once she鈥檚 had her operation and does get some sight back, makes the point that for her the handsome man she married had aged 20 years overnight and that came as a great shock and indeed was a real problem for her.听 Was that writer鈥檚 imagination?

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Rowe

Yes, yes but also logic.听 Writer鈥檚 imagination starting point but then the logic is everyone else ages around you, as you do, but you don鈥檛 see it, so, visually, in my head, people I knew when I could see don鈥檛 change, I can鈥檛 imagine what they look like as older people.

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White

In its own publicity the 成人论坛 has made it clear that things don鈥檛 turn out as Vicky expected, so we鈥檙e not spoiling the plot by that but one of the things that Vicky says, when really it all goes a bit pear shaped and she has to explain to Barry what the problem is, she says:听 鈥淚 can鈥檛 stop seeing and I have to see everything and it never stops.鈥澨� This is kind of an idea about sensory overload?

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Rowe

Yeah, I think if you suddenly saw everything, you wouldn鈥檛 just see the pretty things, you鈥檇 see the things you don鈥檛 want to see or that are arresting in some way or that are disturbing and that 鈥� you can鈥檛 filter them out, you see everything.

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White

You can鈥檛 switch it off?

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Rowe

No, no.

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White

And she also 鈥� you also have her saying at one point: 鈥淚 miss my blindness.鈥澨� Now, you realise a lot of people will find that really difficult to understand.

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Rowe

Mmm.听 I think at the point lie her 鈥� without saying too much 鈥� her life has become so complicated that she looks back to a time when it seemed a lot simpler when she was blind and she was in control.

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White

We won鈥檛 reveal anymore but are you hoping to change minds with this play?

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Rowe

Changing minds is a massive thing.听 I鈥檓 hoping to challenge people鈥檚 thinking, I think that鈥檚 what I would say.听 I鈥檇 like people to think a little bit, yeah.

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White

Mandy Redvers Rowe.听 And you can see 鈥淪econd Sight鈥� next Tuesday afternoon on 成人论坛 1 at 2.15 or on Catch Up whenever it suits you.

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And that鈥檚 it for today.听 We welcome your comments, as you know, you can leave a voice message on 0161 8361338.听 You can email intouch@bbc.co.uk or you can find our website 鈥� bbc.co.uk/intouch 鈥� and from there you can download tonight鈥檚 and previous editions of the programme.

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That鈥檚 it from me, Peter White, tonight鈥檚 producer Louise Clarke-Rowbotham and the team, goodbye.听

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