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You and Yours聽- Transcript 大象传媒 Radio 4 |
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TX: 12.04.06 - MS Nurses PRESENTER: JOHN WAITE |
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WAITE Now all this week we've been running a series of features about multiple sclerosis, a condition, as we've heard, which is extremely variable. And that can make things like relationships, planning a family and employment very difficult when you have no idea how MS might affect you over the years. The people most able to help are specialist MS nurses, but only a few hundred for the more than 85,000 people in the UK who have the illness, there aren't enough to go around. However, we've been speaking to one of the top MS nurses in the country about some of the common concerns voiced by people living with multiple sclerosis. PORTER My name is Bernadette Porter and I'm an MS nurse consultant at the National Hospital for Neurology at UCLH in London. The main things MS nurses do are signpost the person through the health service, they're able to support people at time of diagnosis, able to help people at time of relapses and how to make adaptations into their lifestyle. Relationship issues are something that come up often. We're going to hear now from the Stockport Young Mother's Group and a couple of scenarios from MS message boards. MS MESSAGE BOARD Does anyone single feel worried like they're just be left on the shelf? Just keep on thinking who'd want a relationship with me when there are other able bodied people out there? Do I have an affair or not, that's the question, what should I do? My wife's had MS for many, many years now, do I leave her and take our son as she couldn't possibly look after him, stay and carry on, have an affair to get the physical side I require or something else? STOCKPORT YOUNG MOTHER'S GROUP You've still got exactly the same feelings as beforehand, you're not a different person but your body won't do what you want. You just can't make it with the fatigue, he couldn't understand why having one early night didn't sort it. In fact you're still exactly the same person. PORTER The question of advice regarding whether to have an affair or not, that's a very complicated area. My concern is that the person is acting as a carer for someone with severe physical disabilities and it is important to see what support could be available, with perhaps some health professionals doing more of the caring so that the balance in that relationship could change back to one of friendships and lovers and partners, rather than a carer and a person who's disabled. Another question that comes up in relationships are issues such as can you have children, will pregnancy be difficult, will MS be passed on to my children? These are real concerns for people. MS SUFFERER When I was first diagnosed I was advised that there was nothing whatsoever against having children. I had my daughter, I've now got a grandson and they're both very healthy. I used to worry when she was younger - when she'd been running around, she'd say oh my legs are aching and I'd think oh what's wrong now. But 10 minutes later she'd be running around again, no bother. PORTER MS is not an hereditary condition, there's a slightly higher risk to children of people with MS. During pregnancy MS often gets quieter and people will often feel better during pregnancy. But the first three months after giving birth the person may experience an attack. Whether someone who has MS can continue working is a common concern but listen to David Howard. HOWARD Fit replacement windows, do conservatories and this sort of work which can be heavy work at times and to some extent I have to pace myself. I gave up working for the real mad rush firms. I have to think before I do things. When it gets too much you have a couple of minutes, sit down in somewhere cool, get me breath back, get your breathing back and go for it again. PORTER A lot of people with MS leave employment when they don't really need to. The other thing is that MS is covered under the Disability Discrimination Act and you can discuss your diagnosis with your employer and they are obliged to make some reasonable adjustments to facilitate you at work. It's not just people with MS who have to learn to live with the condition, families also have to learn to adapt and this can be hard for children who've got a parent diagnosed with MS. A fellow nurse, Kerry Mutch from the Walton Centre in Liverpool, has been working with children offering advice and support and is putting a book of advice together. She's been asking the children themselves about their worries. VOX POPS Questions like is it going to shorten my dad or mum's life span? Will it cause any other effects such as the side effects I can see now? Will it get worse, will it get better - that sort of question. And stuff like will they die quicker or will they not be able to go out anymore? For me, at first, I was like a bit - I didn't know what to do with myself and I was like what's going to happen and where am I going to go to talk to someone. And now recently we started going to this place called [indistinct word] young carers where we can go and like get away. And then I just felt like I can talk to people and I've got a mentor at school that I can talk to anytime. MUTCH It is always there and it isn't going to go away but if we can help lessen their load, their worry load, then it's done some good. PORTER That was MS nurse Kerry Mutch. MS is usually diagnosed when someone is aged between 20-40. This can be problematic when it comes to needing to go into respite or residential care. People often find themselves being in institutions where the other people around them are much older or perhaps have dementias or the staff are unable to understand or meet their needs. HANNA My name's Val Hanna and I'm 34 and I have problems with respite care. The first time I went in respite care I stayed for one hour. I know somebody who's 16, I know somebody who was 18 when they were diagnosed with MS and basically a nursing home or a hospital isn't really the model that we need, it would be good if there was somewhere young and hip and happening. PORTER Respite is supposed to be beneficial, if you're offered respite in an inappropriate environment it actually can be the opposite - it can actually cause major psychological trauma and actually can upset people hugely. So we do need to do something in this country to give age appropriate respite and residential care put in place. Unfortunately, the way the NHS is in crisis at the moment there are real concerns that jobs such as specialist MS nurses are under threat. There's a problem in that there's not enough MS nurses in the country, there'll be hundreds of people with MS who have never ever have met an MS nurse and that's needed to change and we need to improve things. WAITE Well in our report in tomorrow's programme we'll be finding out whether current medical advances offer real hope of a cure for MS. Back to the You and Yours homepage The 大象传媒 is not responsible for external websites |
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