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You and Yours聽- Transcript 大象传媒 Radio 4 |
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TX: 16.11.04 - Call You and Yours: Carers - Part II PRESENTER: PETER WHITE AND LIZ BARCLAY |
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THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.聽 BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE 大象传媒 CANNOT VOUCH FOR ITS COMPLETE ACCURACY. WHITE And time for Call You and Yours.脗 And in the manifestos that our programme have been inviting listeners to draw up at the time of last year's Queen's speech, no group in society got more support for help than carers.脗 Six million of us currently provide some form of care for a relative or a friend and it's estimated that figure could rise to 13 million within a decade.脗 So exactly what kind of extra help is needed?脗 Is it simply more money to make up for people not being able to work or train while they're caring?脗 Is it more breaks so that less carers themselves become ill?脗 Or do you have perhaps other imaginative suggestions of how this problem, which is bound to grow, could be dealt with?脗 Carers are said to save the NHS 拢57 billion a year - the total cost of - fairly near to the total cost to the NHS but did we form the service to take care of our loved ones, may we have to rethink how we live and what we may have to give up to be truly regarded as carers? Do call us.脗 And we'd like to hear about successful patterns of care as well as stories where things have gone wrong.脗 You can call us on 08700 100 444.脗 Emily Holzhausen is still with me, of Carers UK.脗 Let's go to our first caller though who's Edith Homall calling from Glasgow, Edith good afternoon. HOMALL Good afternoon. WHITE Tell us about your own experience of this and what you found difficult. HOMALL Well about 1990-91 it was apparent that my mother was suffering dementia and I gave up working to start caring for her.脗 And the necessary people came and assessed her and agreed with me and made sure that her pension reflected attendance allowance etc. etc.脗 And so we proceeded and with each change in things we had to add in chiropody and incontinence pads and all these sort of things that happen. WHITE So there were things there to help you, so what was the biggest problem you encountered really? HOMALL Well for a year and a half no one told me there was a carers' allowance, I had no knowledge of it whatsoever. WHITE That's the allowance that you're simply entitled to because you are caring - the basic allowance. HOMALL I went from an unemployment benefit to just coping because I thought I have made this decision myself to care for my mother and nobody volunteered the information that this was available to me at all. WHITE So although you had quite a lot of professionals tramping through your front room or you went to see them it didn't occur to anybody to tell you this? HOMALL No, no not at all, not at all.脗 And their total focus was on my mother, completely and utterly.脗 And it also took about two years - two to three years before the word respite was even mentioned. WHITE So your argument really would be there are things there but people don't actually get told what they are, what they're ... HOMALL Well there are things there but there's not nearly enough of them.脗 Also the sting in the tail was about three years before she died she became doubly incontinent, which put a tremendous strain on everything and it was purely a chance conversation in the street that told me - by a neighbour - that told me that there was such a thing as a laundry service operated by a local hospital. WHITE Edith thank you very much indeed for that.脗 I want to pursue this a little.脗 Brian Harris is calling us from Ross-on-Wye.脗 Brian, good afternoon. HARRIS Hello good afternoon. WHITE What about in your case, yours was more about I think where someone could actually live. HARRIS The problem is that we are one of a small group that's classed by the social services as self-funding, which means we get no help whatsoever or advice. WHITE And that's because of your income, is that ... HARRIS That is because of my wife's savings.脗 And once they're gone we will be destitute virtually.脗 But the big problem is that I have to have a small operation shortly and it means that I will not be able to do any lifting or bending for three weeks.脗 Now with someone that is totally disabled and registered blind there is an awful lot of bending and lifting to do.脗 So I'm going to have to find a nursing home that will take her in and that is acceptable to her and the only one that is - meets our standards at the moment is 拢800 a week which I will have to pay. WHITE So really you - you feel you have no choice in that matter, you have to have the operation, you don't - you're not covered by any benefits and also this was difficult to find anyway. HARRIS Yes because the social services just give you a list of the nursing homes within their county and it's up to you to go and asses them and see if they will take the person in and if they are the sort of nursing home that you would want the person to be in. WHITE Let me bring in Emily Holzhausen because we've got two examples there, I mean one is a financial problem as well but they are both problems about information aren't they - in other words things that are there but people just aren't told are there. HOLZHAUSEN Yes essentially that's very true.脗 Carers UK have got a longstanding campaign around both this that would affect both Edith and Brian which is to make sure that carers get more systematic information.脗 I mean Brian, as he knows, and a lot of carers do it takes a huge amount of time to find something which is appropriate for your relative.脗 And as Edith said not claiming the right benefits at the right time will affect her pension long term, as well as her savings and income right now.脗 So it's incredibly important that carers find out about their entitlements from professionals very early on. WHITE It still sounds though, for example, that Edith didn't know about your organisation otherwise she could have got that information from you couldn't she. HOLZHAUSEN Absolutely, I mean we have a website that people can go to and a helpline that people can call.脗 But it's very difficult, every year two million people become carers and two million people stop caring.脗 So every year the message that you need to put out that there's information out there needs to be new. WHITE And is presumably at a time when they're under great pressure anyway to go shopping around on the telephone. HOLZHAUSEN It's very - that is very true, carers get very frustrated, get passed from pillar to post, you know you go to social services, they say - Oh yes we don't do benefits, you have to call so and so - and it's very frustrating and time consuming. WHITE Let me bring in Ann Jansen-East.脗 Ann, good afternoon. JANSEN-EAST Good afternoon. WHITE What was the point you wanted to make to us? JANSEN-EAST Well I care for my - both of my parents who are in their mid-80s now and I've been caring for my father, in particular, who's very poorly for the last couple of years and I get an enormous amount of pleasure from caring for my parents and I know that everyone's under a huge amount of pressure, I see it with my mother, who's also in her mid-80s and she's got an awful lot of work to do.脗 But I feel very fortunate that I'm able to do it, they just live a mile away from me.脗 And my sort of day involves going over in the morning and helping my father to get out of bed and get up and get dressed and then helping my mother with a few things that she has to do and then going back at the end of the day and putting him back to bed again.脗 But I feel very lucky that I'm able to do that.脗 And for all the times that we had as kids where my parents were fantastic parents to us, now we've got a chance to do something back for them and I just sort of I've been reading so much stuff in the press lately about all the downside of things and as I say I'm not taking away from the pressure that people are under but it's maybe sort of important also to focus on the positives and how much we get out of being able to care for relatives as well. WHITE Would this be more difficult if, for example, you - you actually had to live in the same accommodation as your parents, would you feel the same way about it?脗 Quite a lot of the carers we're hearing from, of course are caring, they would regard it, as 24 hours a day. JANSEN-EAST Well interestingly enough we're in the process of looking for a bigger house so we can all actually live together because the difficulty I have is I also have two teenage children and my own family and I work full-time, so it's logistically sometimes very difficult to get over early in the morning and fight the traffic and get back in time to get ready for work, to go off etc. etc.脗 So we were thinking perhaps logistically it would be better if we all lived together. WHITE So you're - in a way you're making a plea for it not always to be seen as a problem? JANSEN-EAST That's right, I just think that - as I say I'm not taking away because I do see the problems and the difficulties and the stress that we're all under with doing the work but I just don't want to take away from the pleasure it gives as well and the happiness that it certainly gives my parents and gives us as well. WHITE Ann thank you very much indeed for your call.脗 David Lee is calling from Oldham.脗 David, good afternoon. LEE Good afternoon. WHITE I think yours is more a problem about how you can really care and work simultaneously. LEE Yes well I worked in IT for 30 years and fairly well skilled in the art of computer programming.脗 I had to give up work about six years ago when my wife's myotonic dystrophy got to the point where she could no longer manage on her own.脗 I managed to fit in the odd little bit of work but what would be ideal would be if social services or somebody would assist me in actually finding a job in IT that I can work from home and then instead of me being a drain on resources - receiving about 拢250 a week in benefits - I would become a taxpayer again, contributing to the system. WHITE And you think such jobs ought to be available, are available already? LEE Well there are plenty of jobs for computer programmers, that I know from looking, unfortunately most of them actually request you to attend there. WHITE And you wonder whether that's really necessary. LEE Well I know for a fact that it isn't.脗 Without wishing to start another issue the companies that out-source work to India and Russia and various other places where labour's a lot cheaper. WHITE Indeed.脗 Which is a subject we have dealt with on the programme.脗 David thanks for making that point.脗 I want to bring in Doreen from Poole because she also wants to make a point about work.脗 Doreen good afternoon. DOREEN Good afternoon.脗 Yes well my husband was ill for many years, the illness started when I was in my 30s, he was in his late 40s.脗 So for the first 10 years of the illness we managed with medication etc.脗 But I think my problem was that I was reluctant to admit that I needed care and help and I think this is a problem that a lot of people face.脗 I was able to retain my job and as my husband's illness progressed and as he came more and more and more dependent they were very, very supportive. WHITE Quite interesting you say you were unwilling to say you needed help, is that because you thought it was your job to care for your husband? DOREEN Yeah I think - the way I look at it now in retrospect - because my husband died seven years ago - and when I look back at what I was good at and what I was bad at was that yes I was very good at the things that I had to do and caring for him totally - in the end he was totally dependent.脗 But I didn't realise from his point of view that if I had accepted care or I'd arranged some care to come in for the hours that he was left in the house alone how much better his life would have been.脗 But for me to say to him I'm going to get somebody in - I don't need anybody to look after me - when he did, so I used to get round it eventually when I got some sense I said they were nurses, they weren't, but he could accept a nurse coming and doing things for him but not a helper.脗 So I mean that was just one thing.脗 I think if I had to do it all again, if it happened to me again, the care and attendance allowance I think we should be forced to accept, once we get that we should be forced to accept at the very beginning at least two hours a week and in that time you would get used to people coming into your home, the person who has the illness would get used to somebody else doing things for him that he'd only let his wife do. WHITE Doreen that's a very interesting point, I want to raise it with Emily in a moment.脗 I'm just going to bring in Chris Ring from Ashford first of all.脗 Chris, good afternoon. RING Oh good afternoon.脗 Yes I wanted to just say very much like your earlier callers that it isn't always a negative experience but it is a very, very stressful and very hard work.脗 I care for both my mother and my father, we all live in the same house together, as do two of my adult children and I also care for my grandchildren. 脗 And it has a very positive part of it but it is very hard work, very stressful - oh I just could not do it without outside help of some sort. WHITE So really you'd probably listening to Doreen saying initially she wasn't willing to accept outside help that would strike a chord with you? RING Exactly, we had to have a carer in the end for my mother because she would not get out of bed for me but she will get out of bed for the nurse and it was a battle in the morning because she's very poorly and she would rather stay in bed.脗 And my father's wheelchair bound, she's wheelchair bound now, they're both terminally ill and it is really, really hard work.脗 WHITE Can I ask you - do you think everybody though is capable of doing what you do and what Doreen did and indeed what Ann did?脗 I mean you've been talking about let's not be entirely negative but presumably there are - without saying whether people are good or bad there are some people who are better - much better at doing that very demanding job than others. RING Absolutely.脗 I am only able to do it because my father is an amputee - he lost a leg doing the war - and I've always been aware of the fact that I've lived close to them in order to be able to help them all through my life.脗 I've only ever known my father as an amputee and I knew that the time would come when I would have to care for him.脗 But many of my friends don't understand how I can do it, don't understand why I don't put them in a home, as they say, and I know, for myself, the kind of person I am, that that is absolutely not an option at any time.脗 But it is very difficult for my husband and my family and myself to share myself between all these different people. WHITE I'd like to bring in Emily because that whole batch of calls raises an enormous number of interesting questions.脗 I'm just interested in this idea that some people won't ask for help, don't want to ask for help, or find it difficult to ask for help. HOLZHAUSEN Yes and that is very true, it's true of both the person that's being cared for - it's difficult to have strangers in your home, sometimes doing very personal things for you and many people choose for their wife or husband or son or daughter to have those intimate things done for them.脗 And for carers it's about - usually about coping and being able to manage your life as many people might find in their own jobs, it's hard to admit you're not coping. WHITE Can I just raise with you the point that David raised, which is about employment and the fact of the inflexibility perhaps?脗 One of our callers - Doreen - had a good experience but this idea that you know if companies were more flexible and able more to help things like home working that would take some of the pressure off. HOLZHAUSEN Yeah I think David epitomises a bit of an economic cost that we have, we have a skills shortage and David is a skilled man and flexibility would help.脗 But he's also - he's also a good example of how with the changing demographic situation people keeping in work longer, or needing to work longer, how if companies don't remain flexible they will actually be losing out on a huge sector of the workforce. WHITE Let me go to Margaret Gibson in York.脗 Margaret, good afternoon. GIBSON Good afternoon. WHITE Yeah, what was the point you wanted to make? GIBSON I'm what we'd call a carer at long range.脗 I'm the mother of a 25-year-old lady who has severe learning disabilities and she lived at home with us for 18 years, her behaviour was very challenging and at times she was very abusive.脗 So between the psychologist and my GP it was decided that it would be best if she went away to college, which she did for five years into a community - the Camphill Community.脗 And after the end of five years she's now gone to live in another community and it's 200 miles away because we were faced with having to make a decision - should she come back?脗 Well it had been horrendous when she was at home and I'm a pensioner.脗 She has no siblings and so her quality of life wasn't very good and our quality of life wasn't very good, so the best thing was for her to go into a community. WHITE Can I ask you - was that a difficult decision to make, did you feel guilty about it? GIBSON Yes and at times I still do.脗 I think - although you're a long distance carer you're still a carer, it's still your personal responsibility to look after her and to make sure she's being looked after well, so consequently when I visit I look around and say I wouldn't have done it that way or I wouldn't particularly like doing that.脗 And then I think - Well no, I'm not Lucy, Lucy will be quite happy.脗 She likes the place, I know by not only the words she can use but her body language as well that whenever she goes back she's delighted to go back and she doesn't give us a backward glance. WHITE So you would stick by your - this decision you made and feel that you did the best for both parties? GIBSON Absolutely, absolutely, no doubt about it at all, she would have had a much more isolated life living with us, just her parents and her grandmother and now she's got lots and lots of young people as assistant carers, Japanese, German, all sorts of nationalities as well as the ordinary carers.脗 She lives with about 26 other people with learning disabilities but they don't all live in one house, it's not a hospital. WHITE Margaret, thanks very much indeed, I want to go to Patricia Jay in Aberdeenshire.脗 Patricia, good afternoon. JAY Good afternoon. WHITE Yes what was your point? JAY Well I was thinking to perhaps solve the problem of not enough carers in the whole of society, perhaps everybody between the ages of, for example, 25 and 70, as long as they were fit, should be able to offer their services to anybody in the community and therefore help out those of us - I was a carer for a short period of time and not in such severe circumstances as these people who've spoken today.脗 But I think there's a general need for everybody to help each other and of course not everyone has children who can help them. WHITE You would need safeguards of course. JAY Of course, of course and in a way I'm just giving this as a proposal and then of course the powers that be and all that would have to obviously go into all that side of it and the funding of it but it might enable a lot more people to remain in their own homes and perhaps they wouldn't have to do medical things but they could just take them out, do shopping for them, give them companionship and so on.脗 But make it that everybody does it, not just those who are keen on the idea and make it that all companies know that their employees for say two - one or two weeks of the year would have to carry out this job and it would mean senior people in companies right down to the humblest worker in the company. WHITE Patricia, thank you very much indeed.脗 脗 I will run that by Emily if I get time.脗 I want to go to Liz first with a lot of e-mails. BARCLAY A lot of e-mails Peter.脗 And just to pick up on solutions Joan McMann says that she thinks it's down to us all to take responsibility, she says that anytime any one of us could be made vulnerable by accident or illness, it's therefore the responsibility of all of us to look after vulnerable members of society, especially this applies to children who are the future taxpayers and carers.脗 What is the purpose of society if it's not prepared to care for its members whatever their needs, says Joan.脗 We do have a few people though who have been struggling with care.脗 Kathy Blacklock, who's in full-time employment, e-mailed about the care of her 86-year-old mother.脗 She says, she has to go out of the office on business at the beginning of December, she just wants someone to go in at lunchtime, make sure mother eats and has a cup of tea and is proving a nightmare.脗 She says - I want practical help but if I wanted counselling I only have to say the word.脗 I don't want to talk about it and apart from anything else two carers are cheaper than one counsellor.脗 Another issue raised is the number of people involved in the care sector.脗 For Liz Mullanger she says it's difficult for the ordinary carer to fathom the web of GP, hospital consultants, occupational therapists, social services, when you do need to sort out a problem, let alone finding out about how many benefits may be available.脗 And on the subject of money Caroline Waite says - I am a carer and when I reached my 60s my carers' allowance was slashed from 拢40 a week to 拢16 a week because I got a state pension.脗 The logic is that of course these are overlapping benefits.脗 She says - I was caring one minute and getting an allowance and then I turned 60 and the government took nearly half of my carers' allowance away.脗 So there's a few difficulties and few solutions. WHITE Indeed and I'm going to go to a couple more because so many people are calling.脗 Howard Owens is calling from Exeter.脗 Howard, good afternoon. OWENS Yes hi there, hi. WHITE You wanted to make a point about young carers briefly I think. OWENS Yes it's good to hear that it is of course our responsibility or for one another that's what it's all about isn't it.脗 I think people are not aware of just how many young carers there are and by young I mean very young indeed.脗 In the mid early teens about 1 in 10 young people are caring for somebody at home in quite a significant way but there are also very large numbers of children, as young as three, who are caring for people.脗 And certainly in the project that I'm associated with in giving support to young carers we know some who are six. WHITE That's very young but are you necessarily saying that that's a bad thing?脗 Presumably a lot of children care because they want to care. OWENS Absolutely so and I think they're wonderful children and it's wonderful what they do.脗 No the concern that we have is that in many years of caring through their young years other things go amiss.脗 They may find they're falling asleep at school, the teacher may not know that they are a young carer because people are not so aware of young carers, schooling can suffer.脗 They can be ostracised by their friends because they become mature because of their caring responsibilities and it undoubtedly can lead to problems with getting jobs later on. WHITE Howard, thanks very much, it's a huge subject, probably a subject in its own right, but thanks for mentioning it.脗 Judith Cameron is calling from Bath and will be our last caller I think.脗 Judith, good afternoon. CAMERON Good afternoon. WHITE Yes, what was the point you wanted to make? CAMERON Well my daughter fell ill nearly six years ago with encephalitis, which has left her completely incapable and needing 24 hour care and I've found the package put together through social services and the health service to be excellent. WHITE So really you are saying when it works it can work well? CAMERON We have three wonderful women that work with my daughter, I don't know how we would have coped without them.脗 And I'm extremely grateful to them.脗 I wish I'd known of these types of jobs prior to Sophie falling ill because I think - because that so many women work in other people's homes doing very difficult work and they're often resented for being there.脗 We don't want to have to need care in our home, whether we're - my daughter's 22 - or whether it's an elderly woman or man and these carers are an army that are completely unrecognised I think by community as a whole because they're not in a uniform. WHITE Judith, thank you very much.脗 Emily, just very briefly, there are so many things I'm sure you'd like to comment on - the role of the volunteer, very briefly, is that an answer or are there too many problems associated with it? HOLZHAUSEN I think there's part of an answer - volunteering is extremely important, a lot of people do it already.脗 I don't think it's the only answer - volunteers I don't think will ever be able to stretch that far and we do need proper checks in place to ensure that the right people do it. WHITE Thank you very much all those people who called us and the Carers UK link will be on our website after the programme and there is also the phone number to ring.脗 Our number, of course, is 0800 044 044, which is our help line.脗 Emily, thank you. Back to the You and Yours homepage The 大象传媒 is not responsible for external websites |
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