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You and Yours - Transcript 91热爆 Radio 4 |
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TX: 23.07.07 - Prader Willi Syndrome PRESENTER: LIZ BARCLAY |
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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 91热爆 CANNOT VOUCH FOR ITS COMPLETE ACCURACY. Barclay Oliver Haggerty is 15 and has Prader Willi Syndrome, a rare genetic disorder which causes constant hunger and learning disabilities. His mother, Kate, has been fighting for two years to get equipment she believes will help save his life. It's a wristband which Ollie wears to monitor his movements and which alerts Kate if he tries to get food. It costs £10,000. Kate eventually managed to get £3,000 from her local social services department on condition that the rest came from the company that supplied the equipment. The government has announced more money for services for children with disabilities but even with that and technology improving all the time parents like Kate think that they will still struggle. Melanie Abbot visited her and Ollie at their home. Ollie It's like a normal watch, it's grey and it has a cable tie so I can't take it off. This is fun to wear. It helps me with not going to like the cupboards, that's how it helps me. Kate This is the pager and I wear this all the time and at night I sleep with it under the pillow and it will alert me if Oliver comes within range of one of the sensors, it's so I know whether he's coming to the kitchen or whether the front door is open. Abbot And if you're upstairs and you know that Ollie's down here and it goes off what do you do, do you immediately dive down to check up if he's ...? Kate I call out straightaway because the first thing that he - he needs to know that I know that he's in here and that will usually stop him and he will say I'm just getting a drink or I'm just going into the garden but I'll usually check as well. Abbot And Ollie could I ask you a question? When you're wandering around and your mum's pager's gone off and she calls down to you what goes through your mind? Ollie It's trying to help me by her calling down. Abbot You don't get annoyed and think ...? Ollie No. Abbot You never mind? Ollie No. Abbot How easy was it to go about getting funding for the system? Kate It was hard and there were times when I almost gave up. It took almost two years and lots of letter writing, lots of phone calls. It was funded by social services so we were writing to a gentleman with responsibility for physical and sensory disabilities and in the end he agreed to make a one-off payment of about £3,000 on condition that Vivatech funded the rest. Abbot Some people might argue that locks on the cupboards and the fridge would be a lot cheaper and almost as effective. Kate They would certainly be a lot cheaper but although the locks are a deterrent they don't prevent access to the cupboard. We have a number of different locks still on the cupboards and different keys to them. All he needs to do is to find one of them and he can access the cupboard. So it simply wasn't working. It was a lot of money but without it because of the strain of looking after Oliver and the constant need for supervision undoubtedly he would need more respite care, in all probability his weight would have risen and that brings its own health problems, so ultimately there would be a price to pay. Abbot The struggle for funding isn't new for the children of parents with disabilities. John Coughlan is the joint president of the Association of Directors of Children's Services. Coughlan The technology of services and equipment is rapidly advancing and the sorts of interventions that can be achieved with new technology and new equipment is advancing and then there's a bottom line of resources which sits behind it all - about how much investment we've got to put into sometimes new and more expensive equipment. Abbot He thinks the situation is about to improve. The government's announced another £340 million for services for children with disabilities. But he has advice for parents like Kate who find themselves spending years trying to get the right funding. Coughlan Find the names of the people who are involved in taking decisions on behalf of your child. Work with the school. Try to recognise - I know this might sound like a defensive plea - but do try to recognise that the agencies and the services are not trying to work against, they're trying to operate a system which is about distributing services as fairly possible and that's incredibly challenging. Work with us and work to understand and do demand, though, explanations. If you're not happy with a decision what are the legitimate ways in which you can make representations about that decision or make complaints about that decision. But I do think that the government review does give us an opportunity for the future, the likes of which we haven't seen for some years. Kate Here we go this is where it's all set up. The box sits under there ... Abbot That's the control box. Kate And the cables run through to the sensors in the rest of the house. And you can see on here it's monitoring the activity of Ollie moving around the home. Abbot And most of those alarms seem to be the front door opening - has that been a problem in the past? Kate Ollie ran away when he was a little bit younger and gave us a bit of fright and there was a police search. He went to see the Queen, he was found at Windsor Castle, nobody spotted him until he got to the castle and was queuing to go in and the soldiers realised that things weren't as they should be and contacted the police and because there was a big search he was found and brought back, weren't you Ollie. Abbot How much easier would you say it's made life for you and for Ollie and the rest of the family? Kate Before we had the system Oliver needed monitoring, supervising, 24 hours a day and so I think he's much more relaxed when he's here. Ollie It's much better since I got this to wear. Abbot And does it stop you thinking about food or do you still think about it but you know you can't have it? Ollie It stops me thinking about food. Kate There are three children in this family and I think it's important to consider the needs of all of them, so the girls live here too - it's their home - and it had got to the stage where there were locks on most of the doors and locks on the cupboards and it was making it very difficult. Abbot And you have two other daughters? Kate Yes two girls - Ella is now 11 and Bea is 9. Bea Either Ollie had to be locked in the lounge or the kitchen had to be closed so we couldn't go and get food from the kitchen if we wanted to, so we had to wait until mum came down to open the kitchen door. Abbot How much easier are things now then? Ella A lot easier, don't need to worry where he is. I mean it's quite annoying when it goes off because it's quite loud and especially if it's like on the table or something it buzzes around a lot. So it's quite annoying but you get used to it. Abbot Although the Haggertys are convinced that this system is right for them the Prader Willi Association, which supports the sufferers and their families, is rather more reserved about this. Narinder Sharma is the chief executive. Sharma This really is a novel intervention at present. We should be a little bit careful, this is, I guess this is a dichotomy of personal liberty versus external control and it's important to have a balance. Abbot You'd step back from endorsing it for sufferers in general? Sharma I think you could never make that endorsement widely because people with Prader Willi Syndrome are all different. Abbot Do you think that some people might see this as a rather draconian system, after all we are used to hearing criminals, for instance, being tagged when they're on parole? Sharma Well that is one viewpoint that is against such a system as this and it could be seen as that. Kate What are you getting now? Ollie Some milk. Kate Oh quite healthy. Barclay Kate Haggerty and her son Oliver. And if you want more information about Prader Willi Syndrome you can find a link to the support association on our website later on today or call our help line for details on 0800 044044. Back to the You and Yours homepage The 91热爆 is not responsible for external websites |
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