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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 FactsheetTREATING AMDThe Primary Care Trust in Yarmouth and Waveney have agreed to reimburse patients who funded their own treatment for AMD (Age Related Macular Degeneration). How ever The Primary Care Trust will only refund people who paid for Lucentis not Avastin, which at about a third of the cost is the option most people will have gone for. Before Peter went to China, he spoke to Dr Alistair Lipp, Director of Public Health in Great Yarmouth. The National Institute for Clinical Excellence is due to publish its latest guidance for the treatment of AMD on April 2nd Mani asks the RNIB’s Steve WInyard what he is hoping they will say. CONTACTS THE MACULAR DISEASE SOCIETY 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. NICE MidCity Place 71 High Holborn London WC1V 6NA Tel: 020 7067 5800 NICE guidelines RNIB on the NICE guidelines COMPENSATION Mani has been to Birmingham to visit Stephen Menary who, blind in one eye from birth, lost the sight in his second eye after an IRA explosion. For the last seven years he has been fighting for compensation for his loss of sight but the results of his application have fallen short of his expectations. CONTACTS BENEFIT ENQUIRY LINE Telephone: 0800 88 22 00 Textphone: 0800 24 33 55 Web: A confidential freephone service for disabled people and carers. You can call the Benefit Enquiry Line and ask them to send you a claim pack. They can send the claim pack in Braille if required. The Benefit Enquiry Line is open 8.30 am to 6.30 pm Monday to Friday and 9.00 am to 1.00 pm Saturday. Or visit website below to make a claim online: DISABILITY LIVING ALLOWANCE CRIMINAL INJURIES COMPENSATION AUTHORITY Tay House 300 Bath Street Glasgow G2 4LN Tel. 0800 358 3601 Fax: 0141 331 2287 The lines are open from 9am to 8pm on Mondays to Fridays, and from 10am to 6pm on Saturdays. The CICA is responsible for administering the Criminal Injuries Compensation Scheme throughout England, Scotland and Wales. They pay compensation to eligible applicants who have been the victim of a violent crime. BEIJING Peter White updates In Touch on China’s preparations for the Paralympics. THE 2008 PARALYMPICS GENERAL CONTACTS RNIB 105 Judd Street London WC1H 9NE Helpline: 0845 766 9999 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) 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) RNIB Customer Services on 0845 762 6843 Email: cservices@rnib.org.uk 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. 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 DISABILITY HELPLINE (England) FREEPOST MID02164 Stratford upon Avon CV37 9BR Tel: 08457 622 633 Textphone: 08457 622 644 Fax: 08457 778 878 Mon, Tue, Thu, Fri 9:00 am-5:00 pm; Wed 8:00 am-8:00 pm. Enquiry: englandhelpline2@equalityhumanrights.com Equality and Human Rights Commission Helpline Wales Freepost RRLR-UEYB-UYZL 1st Floor 3 Callaghan Square Cardiff CF10 5BT 0845 604 8810 - Wales main number 0845 604 8820 - Wales textphone 0845 604 8830 - Wales fax 9:00 am-5:00 pm, Monday to Friday (an out-of-hours service will start running soon) Enquiry: waleshelpline@equalityhumanrights.com 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 9:00 am-5:00 pm, Monday to Friday (an out-of-hours service will start running soon) Enquiry: scotlandhelpline@equalityhumanrights.com 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. The ´óÏó´«Ã½ is not responsible for external websites General contacts Back to top TranscriptIN TOUCHTX: 01.04.08 2040-2100 PRESENTER: MANI DJAZMI PRODUCER: KAREN PIRIE Djazmi Hello. This week, an apparent victory for people in Great Yarmouth who paid for their own treatment for age-related macular degeneration, but will anyone actually get their money back? Also, how much is the loss of an eye worth? We hear from a man who thinks he should have got more. And we'll hear how Peter is getting on in China. Clip We hope we can make a programme with you using English. Yeah, well you can because my Mandarin is very shaky. Djazmi More on that later. But first, age-related macular degeneration is the most common cause of sight loss in older people. The debate, which we've heard on this programme on a regular basis during the last few months, is about which drug should be publicly funded to treat it - the highly effective but expensive Lucentis, or the cheaper but unlicensed Avastin. Well as the debate's been rumbling on, some people have actually found themselves going blind, and so have been forced to pay for their own treatment themselves. The good news, for anyone served by the primary care trust in Great Yarmouth and Waveney is that they're to be reimbursed for funding their own treatment. But the bad news, is that as far as we know, no-one qualifies. That's because the PCT will only refund people who paid for Lucentis - which would have cost them up to £6,000 for the initial treatment. But at about the third of the cost most people naturally went for Avastin, despite it not being licensed for AMD. Before Peter went to China, he asked Dr Alistair Lipp, the Director of Health at the PCT, to explain what's been happening. Lipp When the patients approach the PCT wanting treatment they asked us whether we would fund it using a private ophthalmologist and we said we would fund it. However, some patients just went ahead and sought private treatment on their own, which of course they're entirely entitled to. What's happened subsequently is that some patients approached the PCT to say well would you reimburse my private treatment costs after the event. Recognising that there wasn't an NHS service in place at the time I did think there was a case to be made. So we took this to the PCT board and somewhat unusually the board decided that they would be prepared to reimburse patients their private treatment costs retrospectively. What was happening was that patients who went ahead and saw a consultant privately would have been offered Avastin treatment in most instances... White Because of course that's a much cheaper option. Lipp It's a much cheaper option. I mean the PCT was fully aware of the difference in treatment costs but it took the view that the evidence base and the licence supported Lucentis in preference to Avastin. White So are you reimbursing people who have actually used Avastin, the more likely option to be offered? Lipp No, the board took the view that if it wasn't prepared to pay for Avastin at the time then it wouldn't reimburse them retrospectively. White So how many people would actually benefit from this? Lipp In reality I don't think many people will benefit from this because the private practice usually offered Avastin. White So this is going to feel like a little bit of a hollow victory for those people who went for that more likely option isn't it? Lipp Well clearly they're going to be disappointed yes. Djazmi Well that decision by Great Yarmouth came after Norfolk PCT set aside £50,000 to refund patients who've been seeking private treatment since last May as its policy was to fund both Lucentis in second eyes cases and Avastin in first eye cases it will reimburse patients who received either treatment. Good news it would seem for the 30 or 40 people it estimates will be affected but so far no one has received any money back. If you're in Norfolk or Great Yarmouth and you think you might be entitled to a reimbursement please do let us know, contact details to come later in the programme. Well tomorrow the National Institute of Clinical Excellence, or NICE, will publish its latest guidelines on the treatment of AMD which, if no one appeals against them, will come into force in September. With me is Steve Winyard from the Royal National Institute of Blind People. What do you hope NICE will say? Winyard Well we hope that they will follow the consultation document guidance that they issued in December and basically make the new treatments - particularly Lucentis - available for all patients. We really - we expect that, we hope that that'll be the outcome and it'll be great news. Djazmi Just remind us where we are with these guidelines and what they mean. Winyard In England and Wales we're talking about 19,000 people a year who get wet AMD and basically all of those people could benefit from these new anti-VEGF treatments. So we hope they'll be made available and we hope that a very large number of people will as a consequence have their sight saved. Djazmi What about the eventual prescribing of Avastin for AMD, after all it's much cheaper, wouldn't that just be better for everyone? Winyard Well Avastin has not gone through the rigorous testing process that Lucentis and Macugen have, we don't know its safety profile and I think the key point to take from the NICE decision is that NICE has looked at all the evidence and decided that Lucentis is cost effective for the NHS to provide it. So that's what we need to move ahead with and another recommendation of NICE is that there should be a trial between Avastin and Lucentis, the two drugs should be looked at head to head. RNIB welcomes that recommendation. And when we have good solid evidence on the effectiveness and safety of Avastin then maybe that will be the route that the NHS will go down but we're not at that point yet. Djazmi Steve Winyard, stay with us because I'd quite like to hear your thoughts on the case of Stephen Menary. Stephen lost the sight in one eye as a baby, because of cancer. Fourteen years later, in 2001, he was totally blinded in an IRA terrorist attack in London while on his way to an army cadets meeting. He picked up a torch lying in the street which then exploded. Stephen lost his left hand, the hearing in his left ear and the sight in his one remaining good eye. His regiment subsequently raised £300,000 to see him through his teenage years and help him pay for specialist equipment. At the same time he's been awaiting the results of his application to the Criminal Injury Compensation Authority. Well I went to visit Stephen at his home in Sutton Coldfield near Birmingham to see if he was pleased with the results. Menary No actually disappointed that it's taken seven years for the compensation award to be finalised. In my personal opinion is they waited that long until I became independent, maybe until I had employment, so they didn't need to award and support me as much as they would have done originally. I'd lost my right eye through cancer when I was born but that was at four months old and it was never legally considered as a visual impairment, I was never supported education wise for being visually impaired. Before the explosion I would have still be eligible to drive, my sight loss hadn't affected my lifestyle in any way at all. So as a result of the explosion I then became blind. That's my liquid level indicator to help me know obviously when the liquid in the glass has reached the top, particularly useful with hot drinks. The other things I have in the kitchen - I have a talking microwave, I have a barcode scanner so I know what tins are what and sometimes other packages and I can include instructions on them - timings and stuff. Djazmi So what is your award of compensation? Menary The overall award will be £270,000 which is intended to last me for the next 44 years until pension age. The other thing that is affected by the compensation award is any benefit or support I receive I'm not then entitled to. So day-to-day things like council tax, rent, allowance, incapacity benefit - any of those kind of means tested benefits - I'm not entitled to. Djazmi So how much do you have to live on per year? Menary In the best case scenario with everything going to plan it would probably be around £10 - between £10 and £12,000 but that's not something that we could even guarantee on because it would all depend on market fluctuation. And the other thing again which they say is unrelated but again I don't feel it is, is the Disability Living Allowance have recently dropped my award of care down to low rate from medium, even though I was receiving that for the last four years and had annual reviews on that. Since the compensation award they sent me another review and they've changed their decision. [Talking kitchen aids] Other things I have in here is like a - I have a one handed chopping board which you can clamp things with and put them on spikes to hold it while you peel or chop. I have a tin opener which you can use one handed, it's electric and it pulls the tin for you as well. Djazmi So it's not bad, I mean you've got lots of mod cons adapted to suit your needs and you're getting this compensation, there are people who will think quit whinging, try and live my life - I haven't got as many gadgets as you have. Menary Some of the gadgets have been paid for with compensation, with some of the interim payments, some were also provided by the charity St Dunstan's who care for blind ex-service personnel. So I'm very lucky that I'm eligible for St Dunstan's support. A lot of people become visually impaired or blind through medical reasons and not as a result of crime. I do believe that they should also be supported quite considerably because they have a lot of the same difficulties that I have. Djazmi So what are you going to do about it? Menary At the moment we are appealing the compensation award. I intend eventually to try and seek some employment. One of the other things that was as a result of the explosion was the fact that my education was completely disrupted, I'm actually now having to try and catch up seven years later. Djazmi Stephen Menary. Well Steve Winyard from RNIB is still with me. The Criminal Injury Compensation Authority have told us that they can award up to £110,000 for sight loss in both eyes but because Stephen Menary was already blind in one eye they've cut that in half. Given that Stephen was effectively blinded is he right to expect more? Winyard I think the decision of the Criminal Injuries Compensation Authority is ridiculous and we've advised them in the past on - they've asked for our advice, we've given our advice - which is basically that total blindness is much, much, much more of a major impairment than losing the sight in one eye and their compensation should recognise that. To say £55,000 for first eye and £55,000 for second eye is a nonsense and Stephen is, I think, right in arguing he faces additional costs and he should be getting a lot more from CICA. Djazmi And since that award Stephen's Disability Living Allowance has been reduced as well, now the Department for Work and Pensions, who are responsible for DLA, have told us that they don't comment on individual cases but that the reduction of Stephen's Disability Living Allowance had nothing to do with his award. But it seems like he's being penalised for being capable. Winyard Yes certainly DLA should absolutely in no way be related to whatever capital or income you have, it's meant to help you meet the additional costs of your impairment - in this case the additional costs of sight loss and also Stephen has significant hearing loss. So clearly he has very, very considerable additional costs and the DLA system should be meeting those. And certainly RNIB would be very pleased to help him appeal against this decision because it seems blatantly unfair. Djazmi Steve Winyard from the RNIB thanks very much for joining us. Well as Stephen said, he will be appealing to the Criminal Injury Compensation Authority, and we'll keep you posted. And finally, The countdown to the Paralympics is on; just five months to go now and yesterday the Olympic torch was officially handed over to the Beijing hosts in Tiananmen square. The excitement in Beijing can't all be put down to the presence of Peter; but he is there checking out how the Chinese capital is preparing for the invasion of thousands of disabled people. So what's the mood like Peter? White There was perhaps not that much excitement about the torch itself, that's a pretty low key affair. Tiananmen Square was sealed off from the public, the last thing they wanted in the present situation was any untoward demonstrations. What I really noticed when I got there last Sunday is that the commercial spirit is very much alive and well. We wandered down to the Forbidden City, which is a very popular tourist point for Beijingers and foreigners alike - lively sales of Olympic mementoes - caps, badges and mascots - the Fuwa, which are the same colours as the five Olympic rings - and all sorts of things like that was taking place. And it was lovely weather as well, I have to tell you, I don't know what it's like there but it was 15 or 16 degrees. Djazmi Good, well I'm very glad to hear that. Now you're there at the invitation of our sister programme in Beijing, One Plus One, which is based on In Touch, how are they preparing for the Paralympics? White They're really preparing interviews with athletes. China's performance in the Paralympics has been extraordinary really, I mean back in 1996 they won 16 gold medals, quite modest really, the UK, that year, won 39. By 2004 in Athens the UK was still around the mid 30s, doing pretty well, we were still the second most effective country, China won 63 - so almost twice as many. So goodness knows what they'll achieve as the host city. But our colleagues in One Plus One, which is now a very impressive group of 9 or 10 blind journalists, almost like a commune, with a fantastic suite of offices - we'd kill for it Mani I tell you, what they've got there. And they're hard at it and part of their preparation is to learn English for the occasion and I asked two of the presenters - Li Ning and Qing Feng how long they've actually been learning. Ning Two weeks. Feng Two or three weeks. White Well you're doing very well if you've only been doing it for two or three weeks. Feng Thank you. White What do you find the most difficult? Ning Pronunciation and a lot of words. Feng But I think if we can practise everyday we can progress. White So are you hoping to talk to visitors when they come? Ning Yeah. White Because a lot of them will speak English even if they're not English. Ning We hope we can make a programme with you using English. White Yeah? Well you can because my Mandarin is very shaky. Ning But I can understand you. White Well you're doing well. Ning We can teach you Chinese. Djazmi So have you met any of their likely interviewees? White We have indeed, we've met some extraordinary people. One remarkable woman - who name's Ping Ya Li, she was China's first ever Paralympic gold medallist in 1984, that was in New York, she's a long jumper - that was the first time that China had entered the Games - and she'd just become China's first guide dog owner as well. It's not something China's done in the past, there are cultural reasons why that has not been felt to be a good option. Talking about One Plus One journalists learning English, the dogs are actually one jump ahead of them because they've been trained only with English commands, we can't quite figure out why this is, so when Ping Ya Li took possession of her first dog Lucky, with what she describes as her very poor English, the dog had difficulty understanding her. But this lady is a real character and you'll hear more about her when we come back. Djazmi Well I hope Lucky doesn't live up to the clichéd reputations of all guide dogs with that name. What's access like in general though over in China? White I think it's better than Athens was when I was doing the same thing a few years ago. What is odd is that it's become textured pavement heaven - there is textured paving everywhere. You know how in London it's supposed to indicate something, for example that you've reached a crossing or that you've come to the edge of a pavement or a railway line, there they've got a great strip of it right down the centre of the pavement and I cannot for the life of me figure out what it's for. And they've done it - and apparently it's not just Beijing, it's all over China, that's quite a lot of textured paving. Djazmi Peter White, thanks very much, have a safe trip and if you're thinking of bringing back any of those T-shirts I'm a large. White Mani, I'll bear that in mind. Djazmi If you want to find out anymore about anything you've heard in this evening's programme or you want to share your views with us please contact our action line on 0800 044 044. And don't forget that the podcast will be available on the website from tomorrow morning. Do join Peter next week. In the meantime from me Mani Djazmi, my producer Karen Pirie and the rest of them, a very good evening to you. Back to top |
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