91热爆

The British Sj枚gren's Syndrome Association (BSSA) is a registered charity, they raise awareness of the disease and support research into its cause and treatment. Click through to their website

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THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.听 BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE 91热爆 CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

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TX:听 28.01.20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 MIKE YOUNG

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White

Good evening.听 Tonight, how male blood donors can be crucial sight savers.听 And the latest sport seeking Paralympic status.

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Clip

We鈥檝e always got this saying in surfing that the best surfer in the water is the one that鈥檚 having the most fun and ultimately that鈥檚 got to be what this is about, is giving people happy faces, getting fitter, healthier, happier and breaking down barriers along the way.

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White

We鈥檒l be talking to one of the UK鈥檚 top visually impaired surfers later in the programme.

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But first, a call has gone out for more male blood donors.听 It turns out that male blood is crucial for the eye drops needed to control a rare eye condition.听 Sjogren鈥檚 Syndrome is an autoimmune disease which can have several effects including aggravating already dry eyes.听 It mainly affects women.听

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Jo Daniels from Bristol told me how it had affected her.

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Daniels

It came on quite suddenly really.听 It was winter time, all the central heating was on and my eyes felt a little bit dry and I was aware that sometimes I got dry eyes and over a period of a couple of weeks it got more painful, in a way that I hadn鈥檛 experienced before.听 By the third week it was actually so painful and dry that I couldn鈥檛 go to work.听 My eyes started to go very blurry and I was quite confused by this and I just thought it will pass, and I bought some over-the-counter medications to sort of help with the dryness.听 But as we moved into the Christmas period it became unbearable, I couldn鈥檛 tolerate the light, I couldn鈥檛 see very much and then I became unsafe to drive really, couldn鈥檛 watch TV and everything just became very narrow and dark really and I couldn鈥檛 see very much.

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White

How were you reacting to this, what did you think was happening?

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Daniels

When I had to take time off work I started to panic because I didn鈥檛 really 鈥� I had no idea of what was really going on and I didn鈥檛 know immediately that it was the Sjogrens.听 It became progressively worse and then I really started to worry about my future.听 When I tried to access help and treatment and nothing was working and that really worried me.

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White

Eventually, when you got help, what were you told?

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Daniels

It took a bit of 鈥� bit of time to get to the right doctor really and they explained to me that the surface of my eyes had become very scratched and pitted and that鈥檚 why it was blurry and that was why it was painful.听 They did try a number of eyedrops initially but then unfortunately I had to have eye surgery to help plug the ducts of the tear glands, so that if there was any moisture on the surface of my eye that it would be retained but that wasn鈥檛 sufficient either.听 And then we got to the allogeneic eye serum, which is sort of the gold standard treatment really and thankfully that started to work.

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White

So, these are drops that you have to put in, yeah?

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Daniels

Yes, that鈥檚 right, yeah.

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White

Siogrens 鈥� did you know anything about that and did you have any idea that that was what you might have?

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Daniels

I was aware that I had Siogrens but it can affect people in different ways and I had no idea whatsoever that there was a possibility that my sight might be impaired.

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White

When you began to have these drops, how quickly was there an effect and what was it?

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Daniels

It took a couple of weeks but I could tell immediately that it was starting to work.

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White

The problem with the drops though is how often you have to take them isn鈥檛 it?

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Daniels

Yeah, so they initially said that they have to be taken every hour and my heart sank and I said, oh, for how long and they said, well, probably for the rest of your life.听 And that was quite difficult news to receive, as you can imagine really.听 But actually, you know, humans are really adaptable creatures, aren鈥檛 they, and it goes up and down, how often I do take them, according to my symptoms now.

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White

What about at night-time for example?

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Daniels

Yeah, it鈥檚 really difficult at night, so, I put them in before I go to sleep.听 If I wake up in the middle of the night, having had my eyes closed for a few hours it鈥檚 very, very painful and in the morning it鈥檚 very painful as well until I adjust and I鈥檝e used the drops.

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White

What is the situation now, how are you now?

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Daniels

Well it鈥檚 a long-term condition now.听 I still rely on the drops, and I can鈥檛 go very far without drops.听 And I do have days where I can鈥檛 see properly, like today my vision is impaired and I just have to find ways around that.听 I have people at work who assist me and I adapt, as people, I鈥檓 sure, who struggles with their sight do.

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White

How much reassurance have you had that this can be controlled on a kind of permanent basis?

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Daniels

The information that I鈥檝e been given is if this works now for me then this will work, as long as I do what I鈥檓 supposed to do, as long as I use the drops, as long as I鈥檓 sensible with my eyes and with my health then it should be fine, I should be able to maintain at this level.听 But, of course, that鈥檚 not the case if there isn鈥檛 enough blood, which is why it鈥檚 so important people donate.

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White

Jo Daniels.

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Well Dr Elizabeth Price is the Medical President of the British Sjogrens Syndrome Association.听 I asked her how typical is Jo鈥檚 case.

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Price

Sjogrens does cause dryness of the eyes in virtually everybody that gets it.听 Jo has clearly got a fairly severe end of the spectrum problem, so, in the majority of patients with Sjogrens we can control the dryness using over-the-counter or prescribable eye drops.听 And she鈥檚 right that you have to do this lifelong, it鈥檚 a chronic disease and she鈥檚 absolutely correct that it demands a lot of commitment from the patients involved.听 But a small proportion of patients don鈥檛 find the commercially available drops good enough, they get ongoing inflammation and what she鈥檚 describing is actual inflammation of the surface of the eye and of course the surface of the eye is critical to sight, if you haven鈥檛 got a clear surface you can鈥檛 see through.听 And those are the patients who need to move on to something more intense.

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White

And I guess to get all that help you need to get a correct diagnosis.

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Price

You do.

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White

What is it and how does it affect the eye in particular?

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Price

So, it鈥檚 commoner than you think, probably one in 2,000 females, possibly more.听 It causes inflammation of the surface of the eye and dryness because it reduces your tear production and patients produce less tears and the tears they produce become concentrated and evaporate.听 And you get this awful cycle of inflammation of the surface of the eye concentrated ineffective tears and over time it can become increasingly severe.听 And it really does need fairly intensive treatment fairly early on.

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White

And Jo said actually that was the problem, it was difficult to get help initially.听 I mean it would seem even some GPs might not know much about it?

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Price

No, well, you know your average GP may have one at most, maybe two patients with Sjogrens, so they don鈥檛 see it very often.听 Opticians can sometimes pick this condition up but it is definitely under-recognised and underdiagnosed.

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White

Which means that people like Jo wouldn鈥檛 necessarily find your organisation straightaway, if they didn鈥檛 know what they鈥檇 got. 听When they do find you, what kind of help can your organisation offer?

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Price

So, the BSSA offers written information but actually probably, most importantly, it offers a telephone helpline and that鈥檚 run by a team dedicated ladies.

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White

Yes, indeed.听 So, it is a disease primarily amongst women鈥�

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Price

It is, yes.

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White

Tell us about the significance of male blood in treating this syndrome, so largely affecting women.

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Price

Okay.听 Well the evidence is that female serum, female blood, has got oestrogens in it, oestrogens can cause inflammation of the surface of the eye, so, putting female serum on the eye could actually paradoxically make the situation worse.听 So, they have to source serum from male donors and apparently young male donors are the best, unfortunately, they鈥檙e also the group least likely to donate.

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White

Are there other treatments in the offing鈥�

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Price

Yes.

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White

鈥�because we do say that this 鈥� at the moment this is incurable, don鈥檛 we?

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Price

The condition is incurable but there鈥檚 lots of research going on at the moment, in fact there鈥檚 a really interesting study coming up in Birmingham where they鈥檙e looking at new product to put on the surface of the eye, which is a gel.听 And that gel can potentially have serum incorporated into it.听 And the huge advantage of that is that it may mean that the serum drops last longer.

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White

Dr Elizabeth Price from the British Sjogrens Syndrome Association.

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We鈥檝e put a link to their website on today鈥檚 programme page on our website.听

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Now we鈥檝e had some lively responses to both of last week鈥檚 items.听 First, on talking buses.听 Bridget Wills, Julie Fletcher and Dick Hughes all said much the same thing.听 Rather than technology costing millions of pounds, why not give the driver a microphone so they can simply announce the stops along the route?听 On the other hand, Marianne O鈥橞rien just wonders why it鈥檚 taken us so long to do this.听 She says, at least 20 years ago in Budapest, not only did they have audio information on buses, as they now have in London, but announcements about which buses connect to which routes.听

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And then there was this from Lorna Blakney on the so-called EV or eccentric viewing app designed to help with reading off a screen.

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Blakney

From the description it sounds very similar to a feature I have in the software I use on my tablet and my smartphone.听 Synaptic converts all text to speech but it also has a function which at the touch of the button switches to what it calls 鈥渓ine view鈥�.听 This consists of the text in a large font scrawling across the screen.听 The speed at which it moves can be controlled and, if necessary, it can be stopped.听 This feature is available for email, my contacts, my calendar and any notes I may take.听 Finally, you mentioned that some of the people needing this help are elderly and might find technology difficult.听 I鈥檓 84.

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White

And, as always, thanks for your responses.

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Now we鈥檝e featured many visually impaired sports over the years on In Touch but I can鈥檛 recall featuring a competitive surfer before, until now.

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Melissa Reid is 29, she lives in Cornwall.听 She鈥檚 blind in one eye, partially sighted in the other and she鈥檚 already a successful triathlete, winning more than a dozen gold medals in events around the world.听 She won a bronze at the Rio 2016 Paralympics.听 But in 2017 a back injury took Melissa out of triathlon training and it was then that she decided to concentrate more on surfing.听 And it鈥檚 all gone rather well.

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We鈥檝e been done to Falmouth to hear more about the last couple of years in Melissa鈥檚 life.

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Sound of the waves

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Reid

Hi, my name鈥檚 Melissa Reid, I鈥檓 a VI triathlete, competed at the Paralympics and I鈥檝e also surfed since I was about seven, when my dad put me in the sea.

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I think he wanted a surfing lesson and I was a good excuse to have one.听 I mean I probably wanted one as well but I don鈥檛 really remember.听 So, we just booked one in Porthtowan, where we were on holiday and we both had a surfing lesson.听 He stood up the first day, I didn鈥檛.听 So, I think we went back that week and had a second set of lessons and I stood up the second time round.

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And you paddle out, depending how big it is you鈥檒l have to go under the waves.听 You can feel the water sucking out a little bit before you need to go under and that鈥檚 pretty much a good indicator to start duck diving.听 And then once you鈥檙e out back again you can feel the water sucking back before it pushes forwards and that鈥檚 usually when a wave鈥檚 coming.

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I had a back injury in 2017, a prolapsed disc, and it put me out of triathlon for the whole of 2018.听 I saw a couple of people online at the World Adaptive Surfing Championships at the end of 2017 and it sounds big-headed but I thought I鈥檓 better than them, I could do that because I wasn鈥檛 allowed on the bike for quite a while and my running was very, very limited I had more time to go in the sea.听 And there just happened to be the English Adaptive champs in Newquay, so we thought, well, might as well just go down, I might find someone to go surfing with.听 And after my first heat I got out and they asked me if I鈥檇 go to California with them and represent Team England.

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I wasn鈥檛 expecting there to be a women鈥檚 division in the visually impaired because there hadn鈥檛 been before and when we turned up there was just as many women as men, so they allowed a women鈥檚 competition and I came away as the World Champion and in the open division, against the men, I came away in fifth.

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So, California for the World champs, it was the first time I was allowed someone in the water with me, acting as a set of eyes, which we鈥檝e not been allowed before because there鈥檚 never been anything in the UK for that.听 We had a pretty good dynamic going on, competing against the other women.听 We performed really, really well, he had really good wave selection.听 Wild animals kept popping up, like dolphins which distracted us a little bit, which was just part of the fun really that we were going out there and surfing with dolphins and seals and just 鈥� you don鈥檛 get that in many sports really.

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White

That鈥檚 Melissa Reid speaking to us on the beach near Falmouth.

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And that recording was put together by Toby Davey.听

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I should say Melissa鈥檚 back is now much better and she鈥檚 returned to triathlons, winning a couple more gold medals in the last few months.听 Well, we hope to catch up with her again later this year as she aims for more Paralympic success at Tokyo.听

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But if her surfing efforts have inspired you, let鈥檚 hear a bit more about how you go about it.听

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Nick Hounsfield is the founder of the Wave in Bristol, it opened late last year.听 It鈥檚 a 200-metre-long inland surfing lagoon.听 And Nick has surfed with Melissa in the past.听

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So, first of all Nick, just paint a picture for us of what your lagoon is like and what it does.

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Hounsfield

Sure, yeah.听 So, it鈥檚 almost like a kite shaped lake with a pier down the middle that produces perfect surfing waves.听 And with regularity 鈥� a wave every eight seconds pouring down each side of the lake.听 The actual power itself is renewable power which we take off the grid and it then generates a pulse of energy in the water using a succession of paddles underneath the pier structure and it鈥檚 like a giant slinky snake that it sort of pushes and pulses waves each side of the lake alternately.听

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White

Now you welcome blind and partially sighted surfers.听 Can they be absolute beginners?

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Hounsfield

Absolutely, yeah.听 We can cater for people who鈥檝e never tried the sport before.

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White

So, have you already had some visually impaired surfers have a go?

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Hounsfield

Yes we have and what鈥檚 great is that we don鈥檛 actually know they鈥檙e coming until on the day often and they鈥檙e just rocking up wanting to go for a surf, which was always the dream 鈥� is that it shouldn鈥檛 be a big to do to have to get people with visual impairments into the lake, they should be able to turn up just like anybody else.听 And this was part of the English Adaptive Championships each year, is in the morning we have a workshop where we bring coaches from around the country and give them the training that they need so that they can deal with people at the beach who鈥檝e got adaptive needs or visual impairments and it gives complete accessibility of the sport.

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White

Now you鈥檝e surfed alongside Melissa, what was that like and what did you take from the way that she does things?

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Hounsfield

The reality is she鈥檚 a very, very good surfer and when you鈥檙e out in the water you really would not know any different.听 She does need, sometimes, somebody to be out there spotting waves with her but ultimately when you鈥檙e out, just sort of free surfing, or not in competition you鈥檇 know no different.

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White

Melissa has some sight, just how different is the surfing experience for someone who鈥檚 entirely blind, as 鈥� well I鈥檝e got little light perception but in terms of seeing what鈥檚 coming no effective sight and there are people, of course, who have no sight at all.

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Hounsfield

There鈥檚 a guy called Gaio [phon.] in Northern Spain who goes to these adaptive championships as well and he鈥檚 completely blind and needs to have somebody out there properly whistling, shouting, clapping, telling him exactly when to duck under a wave, where the wave鈥檚 coming from.听 But again, their senses are so tuned to the water, just the way that the water moves, the way it rises up and down and the currents, that they鈥檙e spotting a lot of these things before they鈥檙e being told when a wave鈥檚 coming.听 It certainly doesn鈥檛 seem to be a barrier to their ability and once they鈥檙e up on their feet they鈥檙e tearing down the wave like anybody else.听 There鈥檚 no barrier there, really.

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White

Melissa is obviously a very able athlete, she is clearly very athletic, is that athleticism essential would you say for a visually impaired surfer?

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Hounsfield

I don鈥檛 think it鈥檚 essential, it鈥檚 clearly what has allowed Melissa to just transfer her skills from triathlon.听 What I鈥檓 really keen to see in the coming years is that more people with visual impairment are able to take on surfing and yeah, they might not have any aspiration to be the world鈥檚 best surfer but ultimately 鈥� we鈥檝e always got this saying in surfing 鈥� that the best surfer in the water is the one that鈥檚 having the most fun.听 And ultimately that鈥檚 got to be what this is about, is giving people happy faces, getting fitter, healthier, happier and breaking down barriers along the way.

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White

I understand the hope is that parasurfing or adaptive surfing might feature in the 2024 Paralympics in Paris.听 What effect, do you think, that would have on it?

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Hounsfield

I think the timescales are challenging to be able to get it there for Paris but we certainly can see a route through, we know that after the Paris games it鈥檚 going to Los Angeles and potentially to another surfing nation beyond that.听 There are some incredible athletes, people who鈥檝e overcome incredible adversities to be able to become really great sports people and they need to be celebrated like any other sport.

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White

Nick Hounsfield, he鈥檚 the founder of the Wave in Bristol.

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If you鈥檝e had a bash at surfing do let me know how you got on.

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And that鈥檚 it for today.听 You can leave messages with your comments on 0161 8361338.听 You can email intouch@bbc.co.uk or you can go to our website bbc.co.uk/intouch where you can also download tonight鈥檚 and many other previous editions of the programme.听

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From me, Peter White, producer Mike Young and the team, goodbye.

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