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´óÏó´«Ã½ Radio 4 In Touch |
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Listen to this programmeFactsheet of this programmeTranscript of this programme Print this page FactsheetPROGRAMME ADDRESSIN TOUCH ´óÏó´«Ã½ Radio 4 Room 6084 Broadcasting House London W1A 1AA Email: intouch@bbc.co.uk Web: www.bbc.co.uk/radio4/factual/intouch.shtml LUCENTIS After two years of deliberations, Lucentis has finally received its long-awaited approval from NICE, the National Institute for Health and Clinical Excellence. Lucentis is the most effective treatment for wet-AMD or Age –related Macular Degeneration, the leading cause of sight loss in the the country. To discuss the implications of Nice’s guidance, Mani Djazmi talked to Tom Bremridge, Chief Executive of the Macular Disease Society. ABOUT AMD The macula is located at the back of the eye at the centre of the retina. It enables us to see what's directly in front of us and allows us to see fine detail. It plays a vital role in helping people to read, write and drive, and perform other detailed tasks. It also enables us to recognise faces and see colour. DIFFERENT TYPES OF AMD There are two types of AMD, 'dry' and 'wet': Dry AMD is the commonest form of the condition. Cells in the retina fail to function properly as a person gets older. The cells don't take in enough vital nutrients and fail to clear by-products of cell functioning. This causes tiny abnormal deposits, called drusen, to be left under the retina, making it uneven. In time, retinal cells degenerate and die causing sight loss. This occurs very gradually over many years. Currently, there's no treatment for this type of AMD, although there are vision aids available that can help people to maximise the use of their residual sight. Wet AMD accounts for 10 to 15 per cent of cases. It often develops quickly and is also known as 'neovascular AMD' because it involves the growth of new blood vessels behind the retina. These new blood vessels are very fragile and so may leak fluid or blood. This results in scarring that causes rapid visual loss. Fortunately, new treatments mean it's possible to treat the majority of cases. CAUSES It is unclear what causes AMD. It becomes more likely as a person ages because, over time, the cells in the macula become damaged and worn out. Both eyes are usually affected, although one eye may be affected before the other. The good eye usually compensates for the affected eye and for many years this can disguise the fact that there’s a problem. There's no pain or redness of the eyes. Because it's central vision that's affected, patients retain some residual vision, but this is at the periphery of their field of vision where images aren't in focus. Any activity that requires detailed, clear vision is compromised, and in the late stages of the disease sight loss is so severe that patients are offered registration as partially sighted or blind. TREATMENT Currently, there is no medical treatment for dry AMD. However, not smoking and eating a healthy diet may help to slow the rate of deterioration. Additional lighting and magnifiers can help those with dry AMD to make better use of their residual sight. Medical breakthroughs in the treatment of wet AMD mean that, in most cases, treatments can prevent further visual loss, and in some cases restore partial sight. There are three types of treatment for wet AMD:
One type of anti-VEGF treatment is currently licensed in the UK and most treatment is private. Patient groups are campaigning for treatment to be made available on the NHS. To find out if an anti-VEGF treatment would help your condition, talk to your eye specialist. CONTACTS THE MACULAR DISEASE SOCIETY PO Box 1870 Andover SP10 9AD Tel: 0845 241 2041 The Macular Disease Society is a self-help society for those diagnosed with any of the eye conditions encompassed by the overall name of Macular Disease. The Society is dedicated to providing information and practical support so that those with the condition may make the most of their remaining vision. RNIB Royal National Institute of the Blind 105 Judd Street London WC1H 9NE Talk & Support Services telephone number: 0845 3303723 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. NATIONAL INSTITUTE OF CLINICAL EXCELLENCE (NICE) PARALYMPICS Peter White reported from the Paralympics in Beijing. After 3 days of action, Britain lies second in the medals table with 32, 14 of them Gold, behind China who have 16 Golds out of a total of 52 medals. ´óÏó´«Ã½ IPLAYER The programme returned to the issue of ´óÏó´«Ã½ iplayer accessibility. CONTACTS ´óÏó´«Ã½ IPLAYER HELP Tel. 03700 101 338 ´óÏó´«Ã½ Accessibility http://www.bbc.co.uk/accessibility/ ´óÏó´«Ã½ Information on making all aspects of using the internet more accessible ´óÏó´«Ã½ Information on i-player accessibility. GENERAL CONTACTS RNIB 105 Judd Street London WC1H 9NE Helpline: 0845 766 9999 (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’s 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: Trustees from the Royal National Institute of the Blind (RNIB) and the National Library for the Blind (NLB) have agreed to merge the library services of both charities as of 1 January 2007, creating the new RNIB National Library Service. EQUALITY AND HUMAN RIGHTS COMMISSION HELPLINE (England) Freepost RRLL-GHUX-CTRX Arndale House Arndale Centre Manchester M4 3EQ 0845 604 6610 - England main number 0845 604 6620 - England textphone 0845 604 6630 - England fax Mon, Tue, Thu, Fri 9:00 am-5:00 pm; Wed 9:00 am-8:00 pm (last call taken at 7:45pm) EQUALITY AND HUMAN RIGHTS COMMISSION HELPLINE (Wales) Freepost RRLR-UEYB-UYZL 3rd Floor 3 Callaghan Square Cardiff CF10 5BT 0845 604 8810 - Wales main number 0845 604 8820 - Wales textphone 0845 604 8830 - Wales fax Mon, Tue, Thu, Fri 9:00 am-5:00 pm; Wed 9:00 am-8:00 pm (last call taken at 7:45pm) EQUALITY AND HUMAN RIGHTS COMMISSION HELPLINE (Scotland) Freepost RRLL-GYLB-UJTA The Optima Building 58 Robertson Street Glasgow G2 8DU 0845 604 5510 - Scotland Main 0845 604 5520 - Scotland Textphone 0845 604 5530 - Scotland – Fax Mon, Tue, Thu, Fri 9:00 am-5:00 pm; Wed 9:00 am-8:00 pm (last call taken at 7:45pm) DISABLED LIVING FOUNDATION 380-384 Harrow Road London W9 2HU Tel: 0845 130 9177 Web: The Disabled Living Foundation provides 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’s vision is that the benefits of gardening are known to, and can be accessed by, anyone with a disability. Thrive has been supporting blind gardeners for over 30 years, and established the Blind Gardeners’ Club with RNIB in 2006 to help gardeners share information and techniques. Membership of the club costs £9 a year. The ´óÏó´«Ã½ is not responsible for external websites General contacts Back to top TranscriptIN TOUCHTX: 09.09.08 2040-2100 PRESENTER: MANI DJAZMI PRODUCER: CHERYL GABRIEL Djazmi Good evening. This week's programme is all about results - a positive one for listener Mike Worsley and a whole host of them from Peter White in Beijing at the Paralympics. So how are your hosts treating you Pete? White Well I have to say we're having a ball Mani. Now as long as you assume that three hours sleep a night is adequate and you don't mind being lifted on and off buses virtually bodily by enthusiastic volunteers. But seriously the Chinese are doing a great job of organisation and despite the controversies, which you always get at games like these, the organisation on the whole has gone like clockwork. Djazmi Good I'm glad to hear it. But just don't let anyone spirit you away for the next 20 minutes because we need to hear from you later. But first, possibly the biggest result of all - the saga of the sight saving drug Lucentis, which after two years of deliberations has finally received its long awaited approval from NICE - the National Institute for Health and Clinical Excellence. Lucentis is the most effective treatment for wet AMD or age-related macular degeneration, the leading cause of sight loss in this country. To discuss the implications of NICE's guidance I'm joined on the line by Tom Bremridge, the chief executive of the Macular Disease Society. What do these guidelines mean for patients Tom? Bremridge Well this is fantastic news. We've been waiting for over two years for NICE to come up with their judgement on whether Lucentis could be used or not. The treatment is incredibly effective and stabilises wet macular degeneration and in some cases restores vision. So it's a huge step forward. And there have been some restrictions placed on its use but these are not going to affect the majority of patients. For example, your condition has to have progressed to a certain degree, to about the point at which you would have to give up driving were you to have bad sight in both eyes but on the whole it's going to affect a huge number of patients and is very, very good news. But there are long term implications about the capacity of hospitals to deliver the treatment. Djazmi What do you mean by that? Bremridge The good news is that primary care trusts have got to produce the money to pay for the drugs and for the treatment. A tariff per patient per hospital. But of course the hospitals now have got to cope with a huge influx of new patients - 26,000 a year. In most clinics it's going to double their outpatient flow compared to what they've had before. And some hospitals have been good - they've been doing what they call horizon planning, which is looking ahead to seeing what new drugs are coming in and laying in the resources - but others, who've just been staving off the moment when they're going to have to pay for this, have got to get in new nursing staff, new photographic staff, medical staff and find more clinic space. And while the guidelines or the directive is that they should be up and ready to produce the treatments within three months some of them are going to be pushed to be able to achieve this. Djazmi That's quite poor planning though isn't it, I mean it's no great shock that NICE has eventually come round to this way of thinking and passed Lucentis as the drug for treating wet AMD? Bremridge No but this is the way things happen, I'm afraid, in PCTs. We've seen it throughout the two year review of Lucentis in which primary care trusts have fought off the day when they were going to have pay for treatments and many of them have not paid for any treatments since the review started, over two and a half years. And just the same as with that they will, some of them, we know, and some trusts will go to the wire before they start administering the therapy. Djazmi So they've been given three months to get up and running but in actuality how long do you think it will take most hospitals to be able to provide an effective service? Bremridge Well I think we have to be realistic about this. The real burden on them is not going to come until they start dealing with the repeat visits and don't forget the treatment regime is initially three treatments - one a month for three months - followed by top up treatments as considered necessary, which could be a further six or seven in the year. It's not until people start having to come back to the clinics on a regular basis that the real logistic burden on the hospitals is going to show up. Djazmi And what happens in the case of patients who are already being treated with another drug and by this I mean either Macugen or the more controversial Avastin, which hasn't yet been licensed for use in eyes in the UK, will these people be forced to change treatments mid-cycle? Bremridge Well I think this is very much down to local interpretation. But the clinicians view, I know very firmly, is that once you embark on a course of treatment for a patient you should not change it, a. provided it's working and secondly, provided it's not doing any harm. So the patients on Avastin or Macugen should continue. In fact the NICE guidelines do say that Macugen patients should be allowed to continue. But of course Avastin is different in that it wasn't part of the NICE review. But I think the feeling is very strongly, amongst clinicians, that those patients already on Avastin should be allowed to continue. While we're talking about Avastin, Avastin is an unlicensed drug but it's very effective also for treating conditions which weren't subject to the NICE review, so that's retinal vein occlusion, diabetic retinopathy, some myopics maybe and other dystrophies and it's down to clinicians and the primary care trusts to come up with an agreement that allows those conditions to be treated with Avastin because the conditions weren't considered by NICE at all and Avastin works very well for them. Djazmi So can you confirm that if someone goes to their hospital and they have wet AMD that they will get Lucentis, they can't be turned away and fobbed off with another alternative drug? Bremridge No, no the position is absolutely clear - NICE guidelines are legally obligatory. So within three months from the time of the decision, which was 10 days ago, primary care trusts must give Lucentis. Now we believe that there are some who may be trying to make a case for using Avastin, this would not be legal and we would not support it because if you do that then you'll start having complete anarchy in the NHS. If Avastin is to be introduced then the Department of Health and NICE must find a proper and official legal mechanism for introducing it. And don't forget the NHS are already very interested in it because they've committed £10 million to the Ivan trial to compare Lucentis and Avastin amongst 600 patients but that's going to take two years to produce its results. Djazmi Tom Bremridge thanks very much indeed. And of course we're interested to hear your experiences, you can call our action line on the usual number, that's 0800 044 044. Now back to Peter at the Paralympics in Beijing where after three days of action Britain lies second in the medals table with 14 golds behind China who have 16. So what contribution to Britain's tally have the visually-impaired athletes made Pete? White Well actually I mean they've made a good early start, although there is an issue about how strong visually-impaired sport is and we may come back to that in more detail next - in next Tuesday's programme. But as far as early medals as concerned well it's the cyclists, just as in the Olympics, who are leading the way. And for blind and partially-sighted athletes of course that means a tandem race with the blind person providing the engine at the back and with a sighted pilot on the front. Well In Touch regulars might remember this pair from Athens, where they won the very first gold medal of the games. In a funny sort of way they didn't do quite so well this time. Aileen McGlynn and Ellen Hunter you've done it again. Aileen, the last time I talked to you for In Touch you'd won the first gold medal for GB, this time you've only won the second - what went wrong? McGlynn Aha, it was just the timing of it, of the races, if we'd been out first up we'd have probably won it as well. White Anyway many congratulations. Just tell me about the ride. McGlynn I think we set off really well, it felt really hard though, by the time I got off my head was absolutely splitting, my eyes were all going blurry as if I'd lost my eyesight even more than I had. White When you're in a competitive place like that, the two of you, is there any communication between you at all when you're actually racing like that? McGlynn No I mean Ellen does give me a bit of a pep talk to start - at the start line, reminding me of all the things I've got to do but once we're on the bike it's just either ... White So what do you say to her Ellen? Hunter Well the pep talk's a bit secret. McGlynn That's insider information, yeah but it does work, really good. White Aileen and Ellen with the inevitable background music there. And incidentally they won that one kilometre time trial by smashing the world record and today they've added gold in the women's individual pursuit, one of nine gold medals won by the cyclists since they've been here. Djazmi And what about other visually-impaired athletes, have they chipped in? White Well yeah we've had some other successes. We've had success on the track, for instance, Libby Clegg got a silver, that was today, in the B12 category - that's the category for those with a little sight - that was in the 100 metres. And Sam Ingram has won a bronze in the judo. But there are some issues about the proliferation of visually-impaired athletes and we will come back to that. Djazmi Well one of the things I'm particularly looking forward to is tomorrow's amputee football match between my country - Iran - and Britain but no one will be surprised to hear that you've been keeping close tabs on GB's blind footballers, how are they getting on? White Indeed, yeah, part of the job. Of course GB didn't even have a team in Athens because there was this whole issue about whether you can have a team representing Great Britain because of course football is divided into England, Scotland, Wales and Northern Ireland - it's a very complicated argument. It's been resolved to some extent, there's more resolving to do. But they're very chuffed - the GB team - to be back in the games but it didn't actually start too well for them because on Sunday, the first day of competition, although only ranked one place below them they were frankly outplayed by China. Three-nil was the score, it could have been more and I don't want to make excuses for them but I think this could be a classic example of how China has really put huge efforts and resources into training its teams. Cheryl and I went to China six months ago and we visited their training centre at Shuni, north of Beijing, where teams were living together, playing together, practising together, everyday and that included - that was the Paralympic teams. And it's preparation the GB team could only dream about. Anyway they played today, it all went a bit better - they won two-one against South Korea - and after the match I almost literally ran into their captain Dave Clarke. Clarke Hello. White Peter White, In Touch. Clarke Hello, how are you doing? White I'm alright, how are you? Clarke Nice to speak to a fellow customer. White Well done today. Has that recovered you slightly from China because that must have been a bit of a disappointment really? Clarke I woke up this morning and saw it pouring down again, I thought here we go - slippy ball, slippy pitch, scrappy game. And despite trying to lose it we won it. White Good British weather actually, that should have favoured you shouldn't it? Clarke Yeah, yeah it's very much like training at Hereford at the academy, so yeah very much indeed. White Actually that was the point I wanted to make to you - how important was familiarity of circumstances and how familiar is this to you compared to where you normally play? Clarke Well this is a fantastic facility and the facility we've just finished building in Hereford is fantastic as well and the nice thing is that the goals, the pitch, the boarding - everything - is absolutely spot on, as it is on an international pitch, so we could be anywhere frankly and it's the same. But what you get here of course is the additional pressure, the crowd, there's a must win game and that makes it slightly different to training at Hereford. White The thing I noticed about this was the amount of calling and shouting from the bench, from the trainers, and I wondered how helpful that was and how off putting it was because you've got to hear the ball haven't you? Clarke Yeah, it's really important that you focus on the ball but when you've just had a shot, admiring it, having a coach shouting to you get back is quite useful because you turn tail and go. And I think what we've done over the last 12 years, and Great Britain have been a huge part of this, is develop an international game of blind football that really is a credit. White The next game - how do you see that? Clarke Well we've had some ups and downs against Spain, I'm told they didn't look great against Argentina, so let's go and get three points. White Well done again. Good luck for the rest of the tournament. Djazmi I saw Britain lose to Spain actually in the final of the 2003 European championships. Dave Clarke, who turns 38 this week, and he's an example, isn't he Pete, of how age is far less a barrier to the Paralympics than any other sporting event. White Absolutely right, it's rather that you can go on for almost ever, in fact we came across an Australian athlete who is in her 11th Paralympic Games, she's getting on for 70 but she's only got to sit there in her wheelchair and shoot at things, so perhaps that's how she does it. We've also got a fencer - a British fencer - who's 63, so you can - you're quite right - you can go on for a long time in Paralympic sport. Djazmi When you say shoot do you mean with a gun or a ball? White No with a gun, with a gun, so don't wander about and we don't wander about after dark, it might not be safe. Djazmi I'm glad to hear it. But just apropos of nothing at all Pete do you remember this? Clip If they could have kept up the old version while they modify this one, if that's what they have to do, but they've dumped us - I'm not happy, Peter, I'm not happy. White Oh yeah, yes I remember that, that's Mike Worsley, he was the chap who was not getting results from his iPlayer. Djazmi Well that's right. Well he's been back in touch with us and he's found a new software which has solved his problem and significantly improved his mood. Worsley I'm a lot less grumpy now. There's this programme - Webbie which had died because of the ´óÏó´«Ã½ changes and this has been renewed and it's absolutely marvellous. When you use it, it comes up with a list of programmes on the station that you were last on, you can easily change the station, find the programme that you want, you click on it, it's got forward and back buttons with which to navigate. It's all I ever wanted and it's for visually-impaired people and it's extremely helpful. Djazmi So how easy is it to download and install? Worsley It's very easy. The website is Webbie that's webbie.org.uk and it's got the program there, you download it and all your troubles are over once that happens. I think that the ´óÏó´«Ã½, by their own admission, have fallen short of the mark where we're concerned and it would be a good idea if they had a link to that software on their site. You find the programme you want easily, just click on it, it starts playing and you've got forward and back buttons with which to navigate. I've got nothing more to grumble about, it's terrible. Djazmi I'm sure it's only a matter of time though. Listener Mike Worsley talking to us last week over the internet from his home and sounding positively chipper about the software package webbie, details of which can be found on our website. But of course for every Yin there has to be a Yan, so who's grumpy in Beijing Pete? White Well this is an interesting story that - I have to say - it's rather tickled me but I've got a warped sense of humour and it is quite sad and serious in a way. This is the one place where people can be bitterly disappointed when told that they can see more than they thought they could. This is all about Australian athlete Jessica Gallagher who's been banned from the games because when they tested her eyes when she was here, because it's all about categories, they were too good for her classification and poor Jessica was threatened with expulsion from the village, so disgraceful is it to be so sighted. But the Australian team appealed on her behalf to let her stay and the authorities have said she can, presumably as long as she doesn't look at anything but you know that's just me, perhaps I've got a strange sense of humour. Djazmi I suppose now perhaps she can do some more sightseeing than she'd planned for as well. White As long as she does it outside the village. Djazmi Absolutely. You've reminded me again of the 2003 European Blind Football Championships because there a French team - all the squads had eight players - and the French team ended up with only five eligible players, they couldn't make any substitutions for the last game because the other three had been caught peaking underneath their blindfolds because they could see more than their team mates. Well Peter thank you very much. There's coverage of the Paralympics on ´óÏó´«Ã½ Radio 5 Live and evening highlights on ´óÏó´«Ã½ television at 7.00 p.m. And just to reminder that you can contact us via our action line on 0800 044 044 or via the website where you'll also find a podcast of the programme from tomorrow. Next week's programme will be entirely devoted to the Paralympics with you doing most of the work, I'm glad to say Pete. White Yes and perhaps concentrating a bit more on issues rather than results because there are quite a lot of controversies around, including, as I've mentioned, perhaps the smaller numbers of visually-impaired people involved. Is it to do with schools, is it to do with not being able to spot the talent? We'll be having a look at that issue next week. Djazmi I'll be back then as well. Until then from me Mani Djazmi, Peter White in Beijing and our producer Cheryl Gabriel goodbye. Back to top |
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