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	WOMAN'S HOUR TX: 11 JAN 2008 Ventilated Children

	Downloaded from www.bbc.co.uk/radio4 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 麻豆约拍 CANNOT VOUCH FOR ITS COMPLETE ACCURACY. TX: 11.01.08 - Ventilated Children PRESENTER: JANE GARVEY GARVEY What is life like for the hundreds of young people who need 24 hour access to ventilation to help them breathe? Many require very lengthy stays in hospital. But there are moves now to allow more to live at home, if that's at all possible. Well six-year-old Devon is the daughter of Lisa Hackman and Dell Cross. She spent the first year of her life in hospital but is now at home. Her parents have had extensive training and the house is packed with equipment but they do try to live as normal a life as possible. ACTUALITY Alright Devon, mummy's going to give you a suction, can you put your head up? Big cough. And again. And again. Good girl. HACKMAN I was just suctioning the secretions out of Devon's tracheostomy. DWYER So often do you have to do that? HACKMAN It depends really, sometimes it can be - especially if she's ill - it can be every minute. When she's well it can be as little as four or five times a day or even when she's well it could be sort of 25 times a day, it's just something depending on how much she's drunk, how much she's jumped around. And we have to have an emergency box in each room for Devon with an ambi bag and spare tube and suction unit and we've got spare machines there, CO2 machines and Sats monitor machines in every room and oxygen plumbed right round the house. This is Devon's bedroom. The nurse will sit in a chair all night and obviously observe Devon and fiddle around with her machines. Devon's got a ventilator to obviously aid her with her breathing. Devon's slightly different to some other children that are ventilated, all night she's monitored by a CO2 monitor to make sure that the pressure's that she's on are adequate and Devon's needs do change through the night, unlike other children's. She's also got a Sats monitor at the bottom, which obviously monitors her saturation levels, making sure that her oxygen levels are to the right point. And a humidifier at the bottom, which provides water round the circuit because obviously when we breathe it's lubricated. A suction machine to suction her tracheostomy and obviously then sort of life support equipment - oxygen, ambi bag, spare tubes in the drawer. ACTUALITY Devon, can you play your guitar for Jo, your beautiful song that you know? [Indistinct words] Yeah. HACKMAN Unfortunately at the moment Devon requires someone with her constantly, whether that's us or a carer. The carers take her to school and we have carers and trained nurses at night, they sort of do a shift pattern and some school holidays. We don't have any care on the weekends because we do that, apart from the evenings. DWYER Got some photos here of when Devon was in hospital. CROSS A couple of days after she was born fully ventilated, semi-sedated, gastro tube in there, you know, that's how she spent most of her time. ACTUALITY Right Devon, your colouring stuff's out are you going to finish off your colouring? What do you want to draw? A fire engine? Yeah, you going to draw me a nice red fire engine then. Okay. DWYER Devon was moved from Plymouth up to Bristol, after a month and then how long was she in hospital for? HACKMAN Until she was nearly one. The reasons obviously that we moved to Bristol were for Devon to get the best care that was around and knowing that she would get out of hospital quicker than if we were in another area. Unfortunately, Dell was working away and I didn't have any other support network's at that time in the area, so I was in the hospital in one of the rooms for a little while and then there was a hostel across the road which belongs to the hospital that I lived in for about five months. Everyone else in the hospital was going through the same as me and every time you made a friend their children sort of had an operation and moved down the rooms and got better and went home. Or they died and you ended up at the child's funeral. So it was quite up and down, quite emotional. CROSS Lisa would be going in the hospital from about 7 o'clock in the morning and not leaving until 9 o'clock at night time, it was a long time to be in there and not really have anything to do and just looking at a sedated child on a ventilator. DWYER How did you eventually manage to get Devon back home? HACKMAN It was a complete nightmare. Once they got her better and obviously realised her condition and put her tracheostomy in we could have left hospital a lot earlier but unfortunately due to the funding we obviously were kept there a lot longer. CROSS They basically had to get the funding from the government, then they had to get the equipment, whilst they were getting the equipment we all had to go through training, then they had to find some nurses that could look after Devon while we were asleep and they had to be trained up. HACKMAN We started off - we came home a couple of times with a couple of nurses from the unit for an hour, literally just to sort of get used to getting in the car and stuff because at that time the equipment was a lot bigger and heavier than it is now. CROSS It was just like a leap of faith really, you're sort of hoping that it all works, hoping that if any problems occur that you actually sort of get to grips with it quickly and sort it out. You do panic a lot and you're wondering if you're doing it all right. But at the end of the day that's what you want, you want to be home with your family, making sure that you can care for her in the right way. GARVEY Well the little girl was Devon, she's six and her parents Lisa and Dell and the reporter there was Jo Dwyer. Professor Peter Fleming is the professor of infant health and developmental physiology at the Bristol Royal Hospital for Children. Victoria Towsend is the chief executive of an organisation called Breathe On UK, which offers support to families with children on long term ventilation. Good morning to you both. Professor, perhaps you could just explain what sort of children need long term ventilation and why do there seem to be more of them? FLEMING Okay there are really two major groups of children, one is groups of children who've got either problems with their hearts and lungs or they've got a problem with their control of breathing. And most of those children will now be recognised in the first few weeks or months after birth and those children are likely to need help with breathing, particularly during sleep. Most of them in fact can come off their ventilators when they're awake but many of them will need help with breathing during sleep, probably for the rest of their lives but with that limitation can otherwise lead very normal lives - can attend school and go to college and so on. GARVEY That's quite a limitation though isn't it? FLEMING Well it is a limitation but for many of them the nature of the help will change over time and there are newer techniques that are becoming available for older children. So with the restriction that they have special care, if you like, during the night time hours, many of those children can actually be - lead very fulfilling lives, they do have restrictions. The other major group - the other major group is a group of older children, particularly boys in their teens who have a number of conditions where the nerves or muscles are affected. Perhaps the commonest of those is Duchene Muscular Dystrophy. There are a group of conditions where there is a progressive loss of muscle power during adolescents and these young people need help with breathing during sleep which allows them then to lead a much more normal life during the awake time, so that because during sleep they - if they get adequate sleep they're refreshed, they can deal with life during the awake hours, for many of these young people the quality of life by having help during sleep is enormously improved and indeed our recent experience has shown that not only does it make a difference to the quality of life but many of these children or young people or young adults now will survive for very much longer with a high quality of life, perhaps an extra 10 or even 15 years for some of them compared to what was happening before. GARVEY Victoria, is this a question of simple economics, is it simply cheaper to have these children at home and not in hospital? TOWNSEND In the majority of cases yes it's definitely cheaper to have a child on a home care plan. GARVEY In spite of the fact that - as that couple there were describing - there's so much practically that has to be done - people have to be trained, the equipment has to be put into the house and in fact your house has to be suitable, your home has to be suitable surely? TOWNSEND Yes absolutely, all adaptations need to be taken into account before the child goes home. And obviously one of the problems we've been noticing recently is that families on lower incomes with council accommodation are quite often, apparently, according to some of the nurses, the accommodation isn't actually suitable for the families and they need larger accommodation in order to house the team that's going to look after the child. And quite often they're offered actually a flat and some of the families turn this down and this again can lead to a tremendous delay in actually getting the child home. GARVEY Victoria, there must also be situations in which families just don't feel capable of caring for a child like this at home, what happens then? TOWNSEND Well I think you can cite myself as an example. My son William was born in May 2000, he suffered at three weeks from a major cerebral haemorrhage and lives actually to this day at the children's trust at Tadworth. He is 24 hour ventilated and has an extremely complex condition. And it's for this reason that I started Breathe On because I felt I had to put something back into society to thank them for the support that I've received. GARVEY Forgive me, I could be wrong, but you sound rather guilty, you shouldn't feel guilty when clearly you face what would certainly - well I couldn't do it and I'm sure I'm not alone when I say that - do you feel guilty? TOWNSEND I - it's not guilty so much as I feel - I feel very isolated at times because I take my hat off to any family that has a child home. I would if I could, I really would but I really believe - and I know that Professor Fleming agrees with this - that where William is now it gives him the best possible chance to maximise his potential. I live in Dorset, which is where the charity's based, and it's enormously difficult to recruit staff. I don't drive, I'm learning how to drive and would have to rely on staff getting to me using public transport and I just truly believe that William will maximise his potential at the children's trust. He's had major surgery before Christmas and now needs two staff constantly 24 hours a day round him, again round the physiotherapy - that needs to be constant too because these children can't move very much and they need to be able to clear their lungs. GARVEY Yeah, Professor Fleming when you hear Victoria describe the situation it seems pretty sensible obviously that her son is taken care of where he can, as she says, achieve the fullest possible potential but are parents being put under pressure to take their children home when in fact it just might not be the best thing? FLEMING No I think in general it's the other way round. Most families are desperately keen - obviously they want to do the best for their children, all families I think really want to do the best for their children. And often families will see that other families are coping at home with children on ventilators and sometimes the process of trying to assess what's needed for an individual can be quite difficult and quite painful for families to realise that there are certain difficulties and working out the best ways to deal with those. Paradoxically the issue is usually not one of NHS funding, I mean for once this is not an area where the NHS usually fails to come up with the funding. The difficulty is that primary care trusts, who end up footing the bill, have so many demands on their funding that they quite rightly insist upon very, very careful assessment of the needs and the costs of everything that's being done and that actually in itself is quite a difficult and complex process that often takes some weeks or even sometimes months to complete. GARVEY Thank you both very much indeed for being so frank. Victoria, thank you. That's Victoria Newton - Victoria Townsend I'm sorry and you also heard from Professor Peter Fleming. Now there are more details about Radio 4's ongoing social care season on the website, bbc.co.uk/radio4/womanshour and of course you can always e-mail the programme with your own experiences. 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