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1 Downloaded from THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY. IN TOUCH Stem Cell Research and AMD TX: PRESENTER: PRODUCER: PETER WHITE CHERYL GABRIEL Good evening. Tonight three patients in the US have lost most of their sight after unregulated stem cell surgery. Could it happen here? We speak to one of the world s leading experts in the field. And better news for those fighting to save three hotels which offer a specialist service to visually-impaired holiday makers. But first, for many years now, stem cell surgery has seemed to offer one of the brightest hopes of saving and even ultimately of restoring sight. However, a recent case at a private Florida clinic has highlighted the risks of such treatment if it isn t properly supervised. The New England Medical Journal reported that three women had cells taken from their own body fat and injected into both eyes. They have subsequently lost most of their remaining vision. Two of the women have received compensation but the clinic has suffered no additional penalty. Well for more than a decade now, Professor Pete of University College London, has been working on projects to develop the technique of stem cell surgery, particularly in the treatment of the West s greatest cause of blindness Macular disease. He told me his reaction to this case. Absolute astonishment, not even just the stem cell community but with the whole sort of ophthalmology community that anything like this could happen.

2 Now clearly the question that people are bound to ask is what s to stop this happening in the UK? After all private clinics exist here, there have been problems over such treatments as laser before connected with eyesight, why should we believe it couldn t happen here? A very good question Pete. I think it couldn t happen because this was labelled as a clinical trial on clinicaltrials.gov and within the UK we have very strict procedures on how those trials are run and equally there s also good clinical practice which has to be maintained for any organisation to be allowed to do clinical trials. There is no way a patient in the UK on a clinical trial would have to pay for those procedures, that s just not considered ethical at all. Equally in terms of injecting patients both eyes, just wouldn t be done, that s not good clinical practice in a clinical trial because as with any new therapeutic you re not going to take the danger of taking an untested therapeutic into two eyes at once, I mean it s that s just unheard of. And as I say the regulators, both the MHRA and also the hospital ethics and the NHS ethics MHRA that s Medicines Healthcare Products and Regulatory Agency. just would not allow this stem cell clinic to exist in the UK. So you don t think that a private entrepreneur I mean sometimes there are rogue entrepreneurs and I m not trying to scare people, what I m trying to do is to ascertain that you really believe that this just about couldn t happen. No and equally I believe another component around this and to really emphasise for people is how or in what way are you looking at these clinics. You should discuss with your GP, with your ophthalmologist, if you re actually considering any type of treatment which falls outside the NHS. And you should ask extensively questions which then you can go back to any clinician in the UK. So I would hope that those components would stop such a clinic from existing in the UK. And the key questions are that you should ask? The key questions are: Is this part of a UK clinical trial? If so there has to be documentation and there has to be an investigation or brochure and you have to be given that information. Does it have ethics from the hospital? And if it s not at a hospital then where do the ethics lie? Secondly, are you actually paying for this procedure? You should not be paying for a trial procedure anywhere. And secondly, what evidence do they have to assure you that this procedure has been performed safely. There s a very good website, Peter, called the International Society for Stem Cell Research which has a really good section on what to ask and how to be careful in these situations.

3 Just looking at it a bit more broadly, is there a danger, do you think, that stem cell surgery has taken on an almost miracle status and that people think the mere mention of stem cells means some kind of miracle cure? Yes I think it has and I think sadly that may be an issue for the community itself to be aware of. The idea that a whole replacement of an organ or the whole replacement of vision going back to normal I mean the circumstances where people are trying these new therapeutics they will restore vision, hopefully, to a certain level but will that give you 20/20 vision or perfect vision again? It s extremely unlikely. That s not to say in the future that there may be improvements which will aid regenerative medicine. And just to be a bit more positive. Where are we now with stem cell surgery in relation to eye disease and initially obviously particularly in the work that you re doing? So there s a number of groups throughout the planet who are actually working on stem cells. The first target, as ever, has been for Age Related Macular Degeneration. Those early trials we ve done in patients in which central vision was lost, so it was mainly to ensure the safety of the therapeutic and the procedures used and also to get some idea whether it slowed the progression of the disease. The ones which will be coming out soon give a better idea of exactly how well those therapeutics will work before someone loses their central vision. So first of all it was to obviously test their ability in slowing the disease, now it s a case of can they actually save the vision prior to it being lost. And I think over the next year a number of papers will start to be evident that there is a possibility in saving vision. So some of our own work now has gone for publication which we hope will see the light of day by the middle of the year. And here the prognosis and how long is always the kind of elephant in the room, isn t it, can I ask you about that because it kind of feels to a bystander a bit as if we say when are we likely to see some results from this oh it ll be five, maybe 10 years and you ask three years later it s still five, maybe 10 years. Would you accept that that has been something of the experience of stem cell? Yes and I put my hands up to that as well actually Pete, in that we hoped when we started the London project that we d be in clinic within five years, actually it took us eight years. I think one of the things which is becoming more evident within this arena is exactly how long it does take and can we not actually in some way improve that timeline. But I, with yourself, absolutely agree that the five to 10 years, it s not a statement that we should make anymore. Let s get it into the NHS and get it into general clinical practice, is the crucial thing. And working with government and the NHS is definitely something which we are doing. That s Professor Pete.

4 Now when writer Red Szell talked to In Touch about his decision to give up his guide dog after only eight months, he knew he was taking a risk. We usually hear about the life changing experience of guide dog ownership and clearly for many that s true. But Red wanted to share a different perspective. For those who missed it, here s just a flavour of his reasons. Szell One of the good things about friendship is it tends to be on equal footing, I m just not cut out to be anybody s god and I think the fact that the that the dog did think that I was god, I just found a bit disturbing to be honest. I d take her to yoga and though she was very good at demonstrating the downward dog position, she would howl all the way through, so I couldn t take her there anymore. And I d go swimming in the men s pond on Hampstead Heath and she would go and stand at the end of the jetty like the French Lieutenant s Woman and howl until I came back. Well the coals of fire that he expected have indeed descended upon his head. Listener Catherine Gordon will give you a sense of the public mood. Of course the dog was howling when the man was in the pond, she ed. The dog s training meant she wanted to protect him at all times and would howl when obstructed. Considering how few guide dogs there are and how long the training takes, he wasted valuable resources. It is one thing not to be a dog person, another to be so self -absorbed and arrogant. Ouch. Well at the time of the programme, Guide Dogs told us that 92% of partnerships were still operating successfully after a year. But some of your s, rather than rounding on Red, had questions for the organisation. Well we invited Graham from their training staff to answer some of them. But first, he gave me his reaction to Red s case. It is rare. Obviously when we re looking at the matching of our dogs we try to identify the right dog for the right person, we take that we take that element very, very seriously because we know what can happen if things don t go smoothly, things don t go well. Can I put to you some of the things other listeners have been saying? Charlotte Kasner [phon.] is a dog trainer, she is surprised that any fully trained dog would behave like this and she describes her own dog, which is a husky, which she says are hard to train but that, she says, it now behaves trained to walk calmly past cats and even foxes. And what she says is given the high rate of failure in training, and I think she means by that before the dog ever gets to the partner, she says I wonder how many dogs are being rushed through to satisfy need without basic behaviours being consolidated. I think it s a fair question, I think it s really important that we put quality right at the forefront and I think that quality is shown in the successes.

5 But how high is the failure rate during training the dogs that don t ever get to the stage of being partnered with a human being? We work on an overall success rate of around about 60% of those dogs that we re breeding. And so you can recognise that there s 40% of the dogs which come through the breeding programme which actually which actually don t make the grade, and that s why the quality element is so important. As you know we have our own breeding scheme and we aim for quality outcomes. The role of the guide dog is one that can be challenging, we are working with natural dog traits, we wish to ensure that our dogs don t encounter the problems that Red encountered, so far as chasing cats. I know that he highlighted he had problem with actually a dog guiding him too close to a wheelie bin. During the very early stages of partnership it s really important that that rapport and that bond is established, that we work very much on the basics where the training and the working of the dog with the customer is concerned. It s a very steady progress that is made, very gradual and we would expect that over the first 12 months of the partnership developing that that strong rapport would develop and that actually the overall outcome is that a person with sight loss has a wonderful companion and a wonderful companion that is a fantastic mobility aid. Some of the people who contacted us were worried about the matching process. Martin Conway is also quite critical of Red, he acknowledges that his expectations were unrealistic and he says Red, like himself, was probably too selfish to be able to adapt to such a dog. But he goes on: Although Red doesn t criticise the training of the dog in any way there would surely have been concerns from the outset about the bond he did or didn t have with his dog and surely this should have been obvious to the Guide Dog Association. And this maybe, he says, highlights their determination to create as many guide dog partnerships as possible irrespective of their circumstances and degree of sight. It s really difficult for me to comment specifically where Red is concerned but what I would say and what I would agree with is that the bond and the rapport established between dog and person who is blind or partially sighted is absolutely critical. We identify the Labradors and the Labrador cross Golden Retrievers because they do develop a strong bond relatively swiftly and that is absolutely critical if a partnership is going to be successful. I think it s fair to say that we go through a fairly rigorous process to try to identify the right dog for the right person. During that period we have professional staff that are visiting puppy walkers on a very regular basis, generally speaking about once a month. We also run a puppy socialisation training and programmes. And so the probability of things going not smoothly during that first 12 months are limited, we re not saying that things are going to be absolutely hunky dory and that things will be 100% smooth, of course problems will occur but that s why we have our professional staff right on hand to work with puppy walkers to give the appropriate advice and hopefully to gain at the end of months a really nicely balanced well socialised dog that is accepting of people and is also accepting of the various circumstances and environmental conditions that it s likely to be working in. Just two quickies to end with. Liz Silver has sometimes thought about getting a dog but clearly has some of Red s reservations about the degree of commitment needed and she asks: What I would like is a version of Doctor Who s Canine. Surely with technology nowadays

6 isn t it there to develop one and care would be much more like having a cane than a dog. And don t I remember a Japanese electronic dog? I think that s a really interesting comment and I think where we re going with artificial intelligence is absolutely fascinating. What I m absolutely certain about is that whatever machinery that we have it will not take place and it will not replace the genuine affection, the genuine bond and the genuine guiding relationship that is established where guide dogs are concerned. So I do accept technology is going to new heights, absolutely amazing and absolutely exciting. I m very confident that they are not going to take the place of a guide dog. Okay. And one more David Sutton was one of many people who said what will happen to Red s dog or dogs like them, he just wanted to know if there d be a happy ending for these dogs? Absolutely and I think that s a really important point to make Peter. I can confirm that Ella has been rematched and is working as a guide dog. But if we talk generally then I would just say that those dogs that for whatever reason don t make the grade, it may be they ve been withdrawn on health grounds, we do have a long waiting list of people that wish to take on the care for our dogs. So in that situation where a dog needs to be withdrawn and situation where it doesn t actually go out as a working dog it will be rehomed in a nice family environment. Graham of Guide Dogs. And another topic which deeply shocked some In Touch listeners, was the announcement last August that three specialist hotels offering a service to blind and partially-sighted people were going to be sold. Among the reasons given at the time were that demand was falling and that Action for Blind People, part of the RNIB group, no longer felt it could justify the cost of upkeep and repair. Well the fear of those who still enjoyed using those hotels was that with a sale the service would disappear or radically change. But there now seems to be some better news about one of them. The Lauriston in Westonsuper-Mare. Well Teri is Director of Operations at Action and she explained what was happening. The latest with the Lauriston is really good news for our customers. So the hotel will be sold to the Weston College, we re hoping that that sale will complete in the next few weeks and Weston have expressed a desire and enthusiasm to continue provision of the hotel, as a going concern, and specifically to our customer group.

7 And the Weston College is another is a hotel group basically? The Weston College is the college that s based next door to the hotel but they also have provision around catering and the hotel will go into that specific part of the business. So what can people expect in terms of how the service will compare with what they ve had before at the Lauriston? Well the Weston would be able to give you a much more detailed response than I can because they will obviously be doing some preparations now that I can t see. But the indications that they ve given us is that the service will continue as it currently is and that they will continue to meet the needs of blind and partially-sighted people. And the really good news is that the our staff who have throughout this continued to provide excellent customer service for our customers will be transferring over to the new provider. So anybody visiting the Lauriston can expect the same warm welcome from the same staff team that they ve become very familiar with. So really, as far as you can see, continuity or something very close to continuity? Yes absolutely, that s what we can see at the moment, yes. Now there were two other hotels, the ones at Windermere and Teignmouth, is there anything you can tell us about those? The again Guide Dogs could give you a specific update but we have been supporting them as they have actively marketed those hotels for sale. Our understanding is that there has been significant interest in them and we re still hopeful that they will be sold as a going concern. That s Teri and we ll keep you abreast of any other changes that are happening. And that s it for today. To find out more about any of our items you can call our Action Line on for 24 hours after the programme. You can intouch@bbc.co.uk. You can Tweet using #intouch. And you can also download an extended version of this programme as a podcast if you d like to know more about the items we ve covered. That s on our website now. From me Peter, producer Cheryl Gabriel and the team goodbye.