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You and Yours - Transcript Βι¶ΉΤΌΕΔ Radio 4 |
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TX: 13.07.07 - Engineers aiding disabled children PRESENTER: LIZ BARCLAY |
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BARCLAY Innovative design is the key to changing lives as well as making things more aesthetically pleasing, which is what Laurence Llewelyn Bowen is here to talk about. And he's involved with a charity that designs and manufactures custom made products for children and young people with disabilities - the Medical Engineering Research Unit or MERU based in Surrey. It's been running for more 30 years and Laurence it was set up by your father. LLEWELYN BOWEN Yes it was, in 1973. He was an orthopaedic surgeon and I mean - he died when I was nine, so I don't have a vast sort of fund of memories but I do remember very, very clearly that he was incredibly focused on kind of creative solutions - engineering solutions. And he - in fact my children now still play with these amazing toys that he made us, which were sort of farms and garages, all with working bits. I don't know what he made things out, there were a couple of - I can remember a hobby horse in particular that had a beautifully crafted head but I've got an awful feeling it was made out of some rather unpleasant surgical rubber because it really didn't feel very nice when you touched it - looked great. BARCLAY But he obviously put that fascination to good use with MERU. LLEWELYN BOWEN No absolutely and I think this was the real motivation. I mean one of the - and this is one of the reasons that I'm very excited about becoming involved in the charity is that I - I mean obviously to sort of take on the mantel from my father is a very big thing - but I really respond - I get very excited by charities that I think have a very straightforward practical response to issues. It's very easy when you're that bloke off the telly to be seduced by big sexy research charities but actually charities that are just trying to sort straightforward day-to-day problems for people I think need supporting. BARCLAY Okay well let's hear how the charity has sorted out one practical problem. Deborah Raffillin is with us. Deborah, you have an eight and a half year old son Ruben whose life, you say, has been improved greatly by innovative design by the MERU team, tell us about Ruben. RAFFILIN Ruben is my eldest child, he's the eldest of three, and he has very significant and complex disabilities. He has severe cerebral palsy which affects all of his body really and he has very limited use of any part of his body himself in terms of movement. He has no vision at all - he's totally blind - and he has epilepsy and various other medical problems. But despite all of this his school - Sunshine House School - and various other organisations involved with him felt he was a very bright kid and had good understanding of what was going on in the world around him. But because he was so physically impaired Ruben could just not access the kind of communication aids that would allow him to get across his understanding of the world. BARCLAY So how did the team solve that problem? RAFFILIN Well Ruben can only basically use his left hand - the rest of his body doesn't work - and because he's blind he can't eye point to a screen, like a lot of people might do who have limited use of their body, and there was nothing on the market at all that would enable Ruben to access the two switches that he would need to access to be able to operate a communicator, where he has to scan through a menu and then use another switch to select what he wanted. Most people would either touch direct on a screen or use two different parts of their body. So they created a switch mount, which looks relatively simple but required an awful lot of thought to think about Ruben's very unique difficulties and to come up with something that was totally one off and bespoke for him. So it has a gutter where he can rest his arm, because he's blind he can't see where the switches are and he was wasting a lot of time looking around on his table repeatedly to find switches and I suppose in communication speed of communication's important in terms of intimacy with people. So he has a gutter to rest his arm and two switches that are then located very near each other. They made a special barrier between the two switches to try and limit his miss hits, to help him have constructive communication. We found that some people were struggling to understand his communication because he has to have auditory scanning with one switch, so he can hear what he's thinking before he makes the selection, so people could hear these two computerised voices and were never really sure what was Ruben or what was Ruben thinking. So MERU came up with the idea of a personalised speaker that would be mounted very close to Ruben's right ear, that would allow the volume on the scan switch to be right down low so that only Ruben could really hear his thinking process and the people he was talking to would hear actually what he wanted to say. BARCLAY So he can now communicate but that makes a world of difference for him but what about you as a family? RAFFILIN Well it's changed everything, it's very hard - when you have a baby the hardest thing is when a baby cries and you don't know why they're crying. When you have an eight-year-old who is crying or who is angry and you have no way of finding out what is troubling them it's incredibly hard, particularly for a child like Ruben who unfortunately has to spend a lot of time in hospital and does deal with pain and issues of difficulty a lot. It was very hard, before his communicator, for Ruben to have quality interactions with his sisters, how do you communicate with a six year old and with a four year old unless it's verbally? Ruben can now say I feel left out when they're playing fairies and he wants a part. He can say I'm feeling really angry, he can tell them he loves them, he can say to me in hospital I need help or I've got a headache. He can choose what CD he wants to listen to, what book he wants to read. BARCLAY So it's made a huge difference to all of you. RAFFILIN It's made a massive difference. BARCLAY Susan Brumtton is the chief executive of MERU. Susan, you're a trained engineer but you do put a great deal of importance on design of the product too, rather than just the engineering. BRUMTTON Absolutely, we want the things that we make to look good too because it's very important to motivate the children to actually use them in the first place, particularly when we're dealing with teenagers, because we go up to about - we actually go up to 25 - but with teenagers obviously what something looks like is often as important as how it works, so we've got to make it look right if we can. BARCLAY So some example? BRUMTTON Well we've got one young man that we design chin switches for, he uses chin switches to control his wheelchair and his communicator and we've been working with him for a long time and if we don't get it looking right he gets one of his friends to drive over it in their cars. BARCLAY Quite an extreme response. But high design and specialist products like this can't be mass produced, is this really the best way to use the available money? BRUMTTON It is because the children that we're working with just cannot get this equipment from anywhere else, we and a couple of other similar charities are the only sources of this kind of material. For instance we're working with a young man, who again is a teenager, and has only been able to communicate by blinking but we found he could control the movement in his left foot and now he can control a communicator and he can have a conversation and this is a teenager who's never had a conversation before. RAFFILIN I mean Ruben would just be written off by everybody that he encounters if it wasn't for his communicator, he looks like a kid who doesn't get it, who's not aware of the world and he was in hospital about two months ago and there was a gaggle of doctors standing there talking about him and Ruben turned round and said hello, my name is Ruben Raffilin, I'm bored I want to read a book and they looked shocked. BARCLAY Laurence you're officially becoming MERU's patron tomorrow, so you're obviously passionate about this work, how much does the design element then play in your interest? LLEWELYN BOWEN Well I think - I mean it's a particular - I think it's something that we in Britain do very, very well is use design to solve problems. The tradition of design in this country has been very much about that. You look at a comparable tradition in mainland Europe and it's about the aggrandisement of the Roman Catholic Church or something. So it's nice that democracy always turns me on. BARCLAY Thank you very much Deborah Raffilin, Susan Brumtton and Laurence Llewelyn Bowen. Back to the You and Yours homepage The Βι¶ΉΤΌΕΔ is not responsible for external websites |
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