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Listen to this programmeFactsheet of this programmeTranscript of this programme Print this page FactsheetIN TOUCH FACTSHEET 20/01/2009 WEEK 03 CONTENTS PROGRAMME ADDRESS.. 1 PILOT STUDY.. 1 SHARED SPACE.. 2 GAIN COURSE.. 4 GENERAL CONTACTS.. 5 PROGRAMME ADDRESS IN TOUCH 大象传媒 Radio 4 Room 6084 Broadcasting House London W1A 1AA Email: intouch@bbc.co.uk Web: www.bbc.co.uk/radio4/factual/intouch.shtml PILOT STUDY Peter talked to Professor Bal Dhillon, Consultant Ophthalmic Surgeon at the Princess Alexandra Eye Pavilion about a pilot study looking at using stem cells to treat visual impairment caused by damage to the cornea. The cornea is the clear front of the eye and its clarity is vital for the transmission of light to the retina. The surface of the cornea is made up of a multi layered epithelium, which is maintained by adult stem cells located in the periphery of the cornea in a region known as the limbus. Limbal stem cell deficiency is an irreversible disease resulting from the loss of these corneal epithelium stem cells and results in severe ocular surface disease characterised by reduced vision or blindness, chronic ocular irritation and visual glare. Current treatment for chronic corneal disease is limited to two main treatments -standard corneal transplantation and limbal tissue grafting. Both of these treatments carry the risk of tissue rejection, and also face the problem of a shortage of tissue supply. CONTACTS RNIB 105 Judd Street London WC1H 9NE Helpline: 0845 766 9999 (UK callers only - Monday to Friday 9am to 5pm) Tel: 0207 388 1266 (switchboard/overseas callers) Web: The RNIB provides information, support and advice for anyone with a serious sight problem. They not only provide Braille, Talking Books and computer training, but imaginative and practical solutions to everyday challenges. The RNIB campaigns to change society's attitudes, actions and assumptions, so that people with sight problems can enjoy the same rights, freedoms and responsibilities as fully sighted people. They also fund pioneering research into preventing and treating eye disease and promote eye health by running public health awareness campaigns. SHARED SPACE The programme reported on a trial into the use of various textures for street surfaces in a bid to make shared spaces more accessible for visually impaired pedestrians. Shared spaces are urban areas, in which kerbs have been removed, encouraging pedestrians and drivers to share the same space, and be more considerate and understanding of each other's needs. The trial of varying textured surfaces is being carried out by University College London (UCL). The study was commissioned by Transport for London with input and support from Guide Dogs. UCL are looking for volunteers to come to their specially designed laboratory in Tufnell Park, London N19, to try out a variety of surfaces. If you have partial or no sight or a mobility restriction and would like to take part please call: Tel. 020 7679 7962 Or e-mail kim.morgan@ucl.ac.uk The experiment is continuing until the 29th of January. CONTACTS UCL Surface Trial Tel. 020 7679 7962 Or e-mail kim.morgan@ucl.ac.uk THE GUIDE DOGS FOR THE BLIND ASSOCIATION (GDBA) Burghfield Common Reading RG7 3YG Tel: 0118 983 5555 Email: guidedogs@guidedogs.org.uk Web: The GDBA鈥檚 mission is to provide guide dogs, mobility and other rehabilitation services that meet the needs of blind and partially sighted people. RNIB 105 Judd Street London WC1H 9NE Helpline: 0845 766 9999 (UK callers only - Monday to Friday 9am to 5pm) Tel: 0207 388 1266 (switchboard/overseas callers) Web: The RNIB provides information, support and advice for anyone with a serious sight problem. They not only provide Braille, Talking Books and computer training, but imaginative and practical solutions to everyday challenges. The RNIB campaigns to change society's attitudes, actions and assumptions, so that people with sight problems can enjoy the same rights, freedoms and responsibilities as fully sighted people. They also fund pioneering research into preventing and treating eye disease and promote eye health by running public health awareness campaigns. GAIN COURSE Guests: Kemi Bamidele, Independent Theatre Council; Vidar Hjardeng, board member of various organisations. The programme discussed a new course aimed at equipping visually impaired people for participation on the board of organisations. Gain is a board development programme which aims to increase diversity on the boards of arts, heritage and sports organisations in London. The Gain programme provides disabled people and individuals from black, Asian and other minority ethnic groups with the opportunity and skills to serve on the boards of participating arts, heritage and sports organisations. The closing date for applications to the programme is Monday 2nd February 2009. If shortlisted applicants will be invited to attend a selection day on Monday 23rd February 2009. The application can be downloaded from: GENERAL CONTACTS RNIB 105 Judd Street London WC1H 9NE Helpline: 0845 766 9999 (UK callers only - Monday to Friday 9am to 5pm ) Tel: 0207 388 1266 (switchboard/overseas callers) Web: The RNIB provides information, support and advice for anyone with a serious sight problem. They not only provide Braille, Talking Books and computer training, but imaginative and practical solutions to everyday challenges. The RNIB campaigns to change society's attitudes, actions and assumptions, so that people with sight problems can enjoy the same rights, freedoms and responsibilities as fully sighted people. They also fund pioneering research into preventing and treating eye disease and promote eye health by running public health awareness campaigns. HENSHAWS SOCIETY FOR BLIND PEOPLE (HSBP) John Derby House 88-92 Talbot Road Old Trafford Manchester M16 0GS Tel: 0161 872 1234 Email: info@hsbp.co.uk Web: Henshaws provides a wide range of services for people who have sight difficulties. They aim to enable visually impaired people of all ages to maximise their independence and enjoy a high quality of life. They have centres in: Harrogate, Knaresborough, Liverpool, Llandudno, Manchester, Newcastle upon Tyne, Salford, Southport and Trafford. THE GUIDE DOGS FOR THE BLIND ASSOCIATION (GDBA) Burghfield Common Reading RG7 3YG Tel: 0118 983 5555 Email: guidedogs@guidedogs.org.uk Web: The GDBA鈥檚 mission is to provide guide dogs, mobility and other rehabilitation services that meet the needs of blind and partially sighted people. ACTION FOR BLIND PEOPLE 14-16 Verney Road London SE16 3DZ Tel: 0800 915 4666 (info & advice) Tel: 020 7635 4800 (central office) Web: Registered charity with national cover that provides practical support in the areas of housing, holidays, information, employment and training, cash grants and welfare rights for blind and partially-sighted people. Leaflets and booklets are available. NATIONAL LEAGUE OF THE BLIND AND DISABLED Central Office Swinton House 324 Grays Inn Road London WC1X 8DD Tel: 020 7837 6103 Textphone: 020 7837 6103 National League of the Blind and Disabled is a registered trade union and is involved in all issues regarding the employment of blind and disabled people in the UK. NATIONAL LIBRARY FOR THE BLIND (NLB) Far Cromwell Road Bredbury Stockport SK6 2SG Tel: 0161 406 2525 Textphone: 0161 355 2043 Email: enquiries@nlbuk.org Web: The NLB is a registered charity which helps visually impaired people throughout the country continue to enjoy the same access to the world of reading as people who are fully sighted. DISABILITY RIGHTS COMMISSION (DRC) Freepost MID 02164 Stratford-upon-Avon CV37 9BR Tel: 08457 622 633 Textphone: 08457 622 644 Web: The DRC aims to act as a central source of advice on the rights of disabled people, while helping disabled people secure their rights and eliminate discrimination. It can advise on the operation of the Disability Discrimination Act (DDA). DISABLED LIVING FOUNDATION 380-384 Harrow Road London W9 2HU Tel: 0845 130 9177 Web: The Disabled Living Foundation provide information and advice on disability equipment. THRIVE The Geoffrey Udall Centre Beech Hill Reading RG7 2AT Tel: 0118 9885688 Email: info@thrive.org.uk Thrive is a national charity, founded in 1978, whose aim is to research, educate and promote the use and advantages of gardening for those with a disability. Thrive鈥檚 vision is that the benefits of gardening are known to, and can be accessed by, anyone with a disability. The 大象传媒 is not responsible for external websites聽 General contacts Back to top TranscriptIN TOUCHTX: 20.01.09 2040-2100 PRESENTER: PETER WHITE PRODUCER: JOE KENT White Good Evening. The arguments go on about visually impaired pedestrians sharing space with traffic and bicycles but where are the facts? Clip Male voice Keep walking towards me. Keep walking ... Djazmi Okay I've detected a small change in the surface here. Male voice Okay, keep coming. Stop. White Slightly spooky that, Mani Djazmi has been finding out more. And how do you fancy being on the board? We look at the latest attempts to see that blind and partially sighted people are much better represented on the governing bodies of organisations dealing with things such as the arts, sport and heritage. Now as I made for the door coming to work yesterday morning I was intercepted by my daughter, carrying the newspaper. "Good news, dad! Blindness is about to be cured - again!" She said, she had her tongue firmly in her cheek, she's used to headlines like this one: News headline New hope for a cure for blindness! White Which adorned the front page of the Daily Express. Well, we've made it our mission on In Touch to try to deconstruct such headlines, to help people decide where there is real grounds for hope and give a realistic idea of timescale. Closer inspection of this one reveals that the pilot study in question is at this stage concerned with one part of the eye - the cornea - and with one aspect of corneal disease. So, what's the real significance of this development? The pilot study is taking place in Scotland, it's being led by Professor Bal Dhillon, consultant ophthalmic surgeon at the Princess Alexandra Eye Pavilion. I began by asking him just who will be taking part. Dhillon Those people who we're targeting for the trial have this very specific condition known as limbal stem cell deficiency. The limbus is a ring of tissue which surrounds the cornea, which in health should be transparent and have a moist surface. And the analogy with a watch, for example, is that it's the watch glass. Normally you don't see it. We look through our corneas to the outside world. If this limbal tissue is damaged or depleted we don't have the reserve of these very specialised cells which we generate the surface layer of the cornea known as the corneal epithelium. White So effectively what you're doing is replacing damaged cells with healthy cells from owners who have now died? Dhillon That's correct. The cells that are donated, the limbal tissue is grown out in the laboratory and used to resurface the damaged area of the cornea. White Now just to give this some kind of perspective, I know you don't write the headlines but if I can take the opening line of the article in the Express: "A revolutionary treatment could give millions their sight back" - is that true? Dhillon I think all news headlines are designed to catch the eye. I think from the clinical and scientific perspective it's important not to raise hopes for patients who probably may have other diseases arising in the cornea. The excitement with the project that we're about to embark on is that we're looking at a randomised clinical trial, which is the gold standard by which we judge any treatment. White So who are we actually talking about being able to help because I suppose it's the word millions that concerns me, who should stay listening because this is me? Dhillon I think from the listeners' perspective the chances are that they will already be under the care of an ophthalmologist and it would probably be best if patients are interested in being involved in the clinical trial is if they discuss it with their own ophthalmologist. White But it is still possible to be involved in the trial is it? Dhillon It is still possible to be involved in the trial and certainly I take your point that we shouldn't be raising false hope for patients in whom this type of treatment isn't targeted. White Talking about the number of people who could benefit, a number of 5,000 is mentioned in one of the newspaper articles, is that likely to be accurate? Dhillon One of the difficulties we have at the moment is we don't have a good feel for how common this condition is. The corneal blindness is not uncommon on a worldwide basis and of course whilst corneal transplantation is very successful that does carry the risk of graft rejection. And so what we're trying to do is approach this from a layer by layer restoration rather than transplanting a whole cornea which would then run the risk of rejection. White Phrases like "restoring sight" are used, what level of sight improvement are we talking about as the potential for this treatment? Dhillon I think the level of restoration will be dependent on other elements, for example if there is scarring deeper into the layers of the cornea, if there is co-existing eye disease like glaucoma or problems with the retina, they're going to limit the final visual outcome. But there's no doubt that we wouldn't be embarking on a clinical trial of this nature if we weren't hopeful that it would restore vision to some degree. White Without wanting to fall into the trap that we've accused other people of - of looking for sensationalism - can you give me a timescale when this sort of treatment could be reasonably standard in Britain? Dhillon I suspect over the coming two to three years we can expect this to become a standard treatment in Britain once we've demonstrated the safety, the effectiveness and also the optimum surgical strategy for making this a good and acceptable treatment. White Professor Bal Dhillon with what we hope is the measured version of that story. There's more information about the project with our action line, and on our website, details at the end of the programme. And maybe the issue of shared space between visually impaired pedestrians and other road users is another topic ripe for deconstruction. These are the urban areas, in which kerbs have been removed, encouraging pedestrians and drivers to share the same space, and it's hoped, to be more considerate and understanding of each other's needs. Well those in favour of this idea say they're aesthetically pleasing, that they remove the clutter of street furniture and that they help to calm traffic. Those against claim they're dangerous for children, elderly people and disabled people, especially those of us with poor sight. Here's what Tom Pey, from Guide Dogs for the Blind Association, told us last September. Pey I don't want people to underestimate the degree of emotion that there is around this topic. We've had guide dog owners who have had near misses, we've had people with white canes who are staying away from their town centres. And this is happening across the United Kingdom. And it isn't the way the Disability Discrimination Act and the great social visionaries saw the way things should be for blind and partially sighted people or for other disabled people for that matter. White Tom Pey of Guide Dogs. Well the latest development is an experiment conducted by University College London, to test various textures which could be used as possible delineators of zones in a shared surface area - all in a bid to make them as inclusive as possible. The study has been commissioned by Transport for London with input and support from Guide Dogs. Our reporter Mani Djazmi was one of the first people to take part last Thursday. So Mani, what did you have to do? Djazmi Well the experiment which was conducted at a laboratory set rather intriguingly in an inconspicuous North London warehouse, took around an hour to complete. I was taken on to a concrete platform where I met Harry and Derek. They took me to various parts of the platform where I was asked to walk a few yards at a time towards Derek, as if I was on a normal street and tell them when I detected a change in the surface and then I was asked a few questions about that change of surface. Actuality Male Voice Okay you've just come out the shop, you're coming towards me, just imagine you're walking down the road as you walk normally, keep coming towards me. Djazmi I'm stopping because there's a huge dip in the pavement here. Male Voice Okay between zero and two how anxious are you feeling at the moment? Djazmi Well I think at the moment of coming together with this change in surface I'd probably say seven. Male Voice And as you're actually on the boundary how comfortable do you feel? Imagining that you're outside and it's possibly rained or something like that. Djazmi Two. Bit of an abrupt dip there. So that's just a flavour of the kind of thing which went on. As you heard there were no cars or pedestrians there, so I had to imagine being in a street environment. I asked researcher Craig Childs why the experiment isn't being conducted on a real street. Childs It will be but there are a large number of possible surfaces that could be used to help us in a proper street and it would be incredibly expensive and to be honest impractical to create all of those in a street. So we can test a large number in a safe environment and then once we've got it down to maybe one or two delineators we'll do proper field trials. Djazmi When I was doing that I was just wandering around at my own pace with someone next to me and with a sort of parapet on one side and it was all very, very safe and very - you know was fine but in a street, it's raining, there are people with prams, people rushing around and it's completely different. So when you do come to test it properly, if I can use that word, how sort of in depth will the experiment be then? Childs Well it'll cover the elements that you've just raised, that you're thinking about what you're going to have for your lunch instead of what you're walking on as most people do. But we have to limit the number of test parameters and we can exclude a number of possibilities from these safer tests. Djazmi Why does an experiment like this one actually have to take place because talking specifically about shared surface areas there are lots and lots of testimonies, I mean we've heard plenty of them on In Touch in the last year or so given by people who've experienced these areas at first hand? Childs What may be an obstacle to one is a navigation aid to another. Testimonies are useful and we're not taking away the difficulties that some people experience but we have to find something that is suitable for as many people as possible. White That's researcher Craig Childs from UCL. I must say Mani it all sounds a bit spooky when you were in that warehouse, it sounded a bit like something from the Third Man down in the sewers. Djazmi I know what you mean. I was never told Derek or Harry's surname. White Right. Now one of the complaints we've heard in relation to shared surfaces is that there hasn't been enough consultation of visually impaired people - does this herald a new era of communication do you think? Djazmi Well it seems to. We heard about the new Westfield shopping centre in London before Christmas where local blind people felt sidelined by the creation of a shared space there. The Guide Dogs association did actually commission UCL to conduct a similar study in 2007. That concluded that the best delineator is still the good old fashioned kerb. But Colin Mann from TFL told me that this study isn't a response to what Guide Dogs did, but an attempt to develop the understanding of shared surface areas. Mann Firstly I don't wish this to be seen as adversarial, we want to work with the representatives of all sections of the community, including the Guide Dogs association. So I think these tests are better seen as a moving forward based on the advice and knowledge learnt from the Guide Dogs commission to UCL to try and move towards possible improvements but also look at how some of the layouts might be made in a way that encourage their being used by all sections of the community. Djazmi And when you say all sections that is a seriously broad church isn't it. I mean do you think it can be done? Mann We're aware there may be trade offs. So, for example, kerbstones are often used to navigate by some members of the community whereas if one's in a wheelchair or pushing a buggy the kerbstone is actually an impediment but that shouldn't stop us trying to make things as inclusive and as accessible as possible. White So lots of good intentions Mani but how important is this research going to be do you think? Djazmi I'm sure there's a line somewhere about good intentions and paving here. But Colin Mann says the conclusions of the research will definitely be taken seriously and will be used to inform the debate rather than as mere background knowledge. White Mani, thanks very much indeed, more details from our action line again. And participation is very much the order of today. Got some spare time on your hands, or are you just a busy person who'd like to be even busier? How do you fancy being on the board say of an organisation concerned with the arts, sport or heritage? Well, if you do there's a course you could go on, prompted by the belief that disabled people in general are seriously under-represented on such bodies. In a moment we'll be talking to Kemi Bamidele from the Independent Theatre Council; but first I鈥檓 joined by Vidar Hjardeng, who probably doesn't need this course because in addition to his job with ITV News he's already on the boards of the audio-description charity Vocaleyes, the Birmingham Symphony Town Hall, and the RNIB, to name only a few. Vidar, how did you get involved in this kind of public life? Hjardeng About five or six years ago my local society for visually impaired people - Birmingham Focus - approached me about possibly getting involved with their board and I must admit it was something I'd never thought of before, didn't honestly think that I perhaps had the skills because you often think that you need legal or financial - and you do need those skills to be represented on the board but there were other things they were looking for in terms of PR and marketing and media type of thing, not least advocacy. So I started with them and I thought I'd dip my toe in the water and see how it went and a bit like Topsy it's growed and growed. White So from the point of view of visual impairment how do you cope, because I mean when you work for an organisation, as you do, you have time to sort them out if you like and you tell them what you need but here you're involved with a number of organisations, all of whom presumably to some extent have to adapt? Hjardeng If I take the RNIB to begin with, you won't be surprised to hear that many of the board members are visually impaired and therefore they are very, very good at ensuring that you get all the board material in different formats, the format that suits you - whether it's Braille or audio or via the computer. Smaller organisations like Vocaleyes, which I chair, we talk about what's best for the individual and they provide things either in audio or again through the computer and that works for me. White But that's still got a disability focus, hasn't it, what if it's something like the Birmingham Symphony Town Hall, which is absolutely mainstream? Hjardeng You're quite right and I have literally just joined that board in the last three months and so far they've been exceptionally good at coming to me and saying how can we make it work, what would work for you and we're working on it together because they've never actually done this before and they're very, very keen to actually get it right. So had the first meeting, we talked through the papers in advance. One of the things I find quite difficult, I'm not a numbers man, I'm a journalist, I'm a words man I always say Peter, so when it comes to spreadsheets and all that sort of stuff - financial statements - which you do need to be across I actually like to go through that with somebody, that actually helps me and obviously everyone develops their own way of finding what works for them. So as long as there's a willingness there, on the part of the board, that's half the battle done. White Let me bring in Kemi Bamidele, Kemi is the project manager with GAIN, which is sponsored by the Independent Theatre Council. Just explain what the aim of the course is. Bamidele Like you said it is about addressing the under-representation of disabled people at board level and I think there are rather a lot of individuals, like Vidar, aren't aware of these opportunities that exist. So even when they might see the advert they probably don't really think this is for me. And the way that GAIN's designed is it's targeting disabled people who have a passion for the arts, who want to get involved in heritage or sports organisations at board level and make that difference. White So what are you going to be offering people on the course and will you be able to cope with something as specific as visual impairment where people do have very practical needs, as Vidar's been saying? Bemidele Well what we offer is training and development for participants, for potential board members, and these basically cover the things like finance and legal and those kind of things that a lot of board members might feel that they don't have the knowledge for because they've come from various professional backgrounds. In terms of getting to grips with what the individual's access requirements and doing our best to make sure we meet that, that's one of the things that we can't really say at the moment in how we'll do it until we know who the individuals are. White Let me just go back finally to Vidar Hjardeng. If there's one bit of information you'd really have liked a course like this to give you what might it have been? Hjardeng I guess if someone comes up to you from a board and says to you it's only four meetings a year then I would smile and say is it really just that, you really need to know that it does involve a lot of time and I'm very lucky because my employers - ITV - allow me to do it. To do it properly I think it's the time factor that's the key thing. And in fairness to most of the boards I've been involved have actually been up front about that. But there is that standing joke that very often people start of by saying would you be interested in doing this, it is only four or half a dozen meetings a year. White It's just a couple of hours. Hjardeng Quite. But I would say go for it and I hope anyone listening to this might be encouraged to give it a go. White Vidar Hjardeng thanks very much indeed and Kemi Bamidele, who's manager of the project, thank you. That's it for today. For more information about anything in today's programme, you can call our actionline, keep mentioning it, 0800 044 044 or you can email In Touch through the website. There's also our podcast of today's edition, you can download that as from tomorrow. From me Peter White, my producer Joe Kent, and the team, goodbye. Back to top |
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