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	TX: 26.04.05 - Carers Part Two PRESENTER: JOHN WAITE听

	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. WHITE On Call You and Yours today we're putting Carers UK under the spotlight. The charity which represents carers around the country has put together a carers' manifesto to guide whoever gets into Number 10 on May 6th. We've already heard from Imelda Redmond, its chief executive, about what's in it, she's with us to address your calls. Amongst their proposals are financial help along current childcare lines; improved services for disabled and elderly people to free up carers' time; more flexible working practices from employers and an insistence that carers be involved when social policy is being formulated - just a few of their proposals, more may well emerge as we go along. What do you think - does the Carers UK demands, do they go far enough? If you could choose one thing which could improve your life as a carer what would it be? And we'd certainly also like to hear from people who live with carers, who are cared for, and from employers as well. 08700 100 444 is the number to ring. Let's go to the callers first. Jill Bull is calling me from Oxfordshire. Jill, good afternoon. BULL Yeah good afternoon. WHITE What's the point you wanted to make? BULL Well I believe that the carer's allowance at present is very unfair. If you are working you're unable to claim this allowance, so I don't think first off it should be called carer's allowance because although I work full time I also care for the rest of the time of the week, which is three times as much as I work. If you earn over 拢72 this allowance just isn't available to you and I believe it should be available - if it's called a carer's allowance it should be available to all carers. WHITE Presumably the assumption behind that though is if you're working you're not caring. Or you're not caring as much. BULL Well you're not caring if your son or daughter - my daughter, in this case, is in day care during those hours, so I work when she already has other things that she does in her life. WHITE Right, so you feel really that this should be a consistent allowance. Are you satisfied with the rate it's at? BULL Well I mean obviously I would like that to be improved but even at that rate I'd say that I as a carer could use that to buy in domestic help to help me with the chores that I sometimes let slip because I don't have enough hours in the week to do them. WHITE Right okay. Thank you very much indeed for that. Let me go to our next caller, who's Keith Laker calling from Thanet in Kent. Keith, good afternoon. LAKER Good afternoon. WHITE What's your suggestion? LAKER Well the biggest worry that I have long term of being a long term carer is things like pension, in effect they don't exist, I mean by the time I get - I'm 50 now - by the time I get to 65 I will get a very basic state pension full stop... WHITE Because I think ... LAKER ...because I work part time I don't get the - I'm not entitled to the 拢72 carer allowance but the amount of money that I actually earn really just covers the essentials, there's nothing left at the end of a week, certainly not to put into a pension. WHITE So your point is that at the very time when you would normally be putting money into your pension you're not only not earning very much but you're not being able to provide for your old age ... LAKER No, and because I earn just over the 拢72 or whatever is a week I can't get any financial top ups at all. So with the income, the joint incomes, that we have from benefits and what have you we survive but that's about it. WHITE Okay, thank you very much indeed for that point. Let me go to Imelda because there are two very specific points there, can we stay with Keith's for a moment, this point about pension. I think you do address pensions in your manifesto. REDMOND Yes and Keith makes a very good point. What he describes is the situation for many carers who either give up work or reduce their working hours. They can't save for their future, they end up going into old age in poverty. We're calling for a citizen's pension, that would cover carers as well, that would recognise the role that carers play. WHITE And how would that work, when you say a citizen's pension, how would that differ from the kind of pension rights that people have at the moment? REDMOND Well at the moment it's biased against particularly people who have interrupted working lives, so if you give up work to look after children then again give up work to look after perhaps an adult who needs care your pension contributions are reduced. So it's looking at a much fairer spread of that. But it's also for us - it's key that we make sure that we continue to campaign on the employment agenda, so that, for example, Keith is working part time and he rightly says if he earns more than just over 拢70 a week, 拢76 a week, he gets absolutely no carer's allowance. What we're campaigning for is that there's a tapering off, so that he doesn't lose it all. WHITE Rather - so this is really along the same lines which at the moment apply for example to some extent for disabled people who work, where there are limits, you're allowed to work for a certain amount of time, you want that done in the same kind of way? REDMOND We want the tapering in, so that carers if they earn 拢77 a week don't lose all their benefits, but that it gets reduced commensurate with what they earn. WHITE Yeah, which also addresses to some extent the same point that Jill Bull was making as well. Let me go to our next caller, who's Judith Hall calling from Bath. Judith, good afternoon. HALL Good afternoon. Hello. WHITE Yes, do tell me about your own situation. HALL I was - I spent five years helping my mother care for my severely disabled father who had both mental and physical health problems towards the end of his life. My concern is the really inadequate provision of day care, particularly for those with mixed problems, both mental and physical, they seem to fall between two stools and neither side of the health service really wanted to help them. And also that day care provision, particularly day hospital provision, is such an easy target for health authorities who want to make financial cuts. In our case at a time when we were begging for more than the 18 hours a week that my - day care that my father was getting, which left my mother with 150 hours a week to cover, they were reducing the day hospital provision for people with mental health problems because of financial burdens generated elsewhere in the mental health system. WHITE Given that what we're trying to do here is kind of compose a manifesto and get your help and your suggestions, can you - the problem - this is one of those problems isn't it where areas of care, where areas of local government suddenly hit a financial shortfall and whatever legislation you put in place if they have to look for cuts or if the health service has to look for cuts it makes them - can you think of a way that this right, as it were, could be protected? HALL I think only by ring fencing. I think it was an easy target because carers are so burdened by the actual job of caring that they haven't got the strength and the energy usually to protest on their own. It was only because I was second line carer, supporting my mother who had the main responsibility, that I was able to take the time to really protest. Some provision was made for my father but the actual number of days the day hospital was opened were reduced. Those further down the line, those who need the kind of support that he needed now aren't going to be getting it because the day hospital places were cut, the days they were open were cut. So I think only ring fencing of provision. WHITE Actually saying what the money's for and making it inviolable. Okay Judith Hall, thank you very much indeed. I want to go to Joan Mattar from Wakefield. Joan, good afternoon. MATTAR Hello, good afternoon. What I would find most frustrating is that my son, who has a disability of autism, Asperger's Syndrome, the condition is not always understood. So what I would really like to see social services do is make sure that the people who are going to deliver the service to him, hands on, have proper training in understanding the disability. WHITE Do they not? MATTAR No, not always. And in the end that is a waste of money because the service breaks down and it's just - people who aren't trained properly can't deliver the service and they come in, don't do the job properly and then the money is wasted. And so if proper training is given two people who are going to take on this that would be one - a good way and also it would relieve people who are caring and in my situation my husband and myself we want to know if our son is going to have proper care as we get older and are no longer around for him. WHITE Because I think you have a concern don't you that sometimes you aren't listened to, that the parent is not listened to? MATTAR That's it, sometimes the parent - the carers are just - they don't take enough notice of what we are trying to tell them and I find this very frustrating. But the main thing is also - is understanding the condition and making sure people who are going to deliver the service are properly trained in understanding the condition. And this is not just a day course, it needs constant training. WHITE Okay, Imelda Redmond, do come in here, both of those calls in a way - one dealing specifically with social services, one perhaps the relationship between health and social services - what are you calling for and would your proposals have solved either of these problems? REDMOND Well I think one - what comes through very strongly from both of these callers is the low status of social care in our society. A lot of the main parties' manifestos are very target driven around healthcare, around waiting lists, around turnaround time for appointments. And actually what we see in our organisation and these two callers as well, are about people who are living with lifelong conditions that go unnoticed, they have their diagnosis and then they go home and they're left with the families to deal with. What we need is actually a brave shift away from acute headline grabbing services into the maintenance and sustaining people at home. And certainly Joan's point about people not understanding her son's condition is very familiar and we campaign very vigorously on people listening to the family - the family do know their son best, they really do. And we continuously repeat that. WHITE One of the problems with this surely - and I'm not clear whether your manifesto really solves this problem - is that what we hear - governments say we want local authorities and the health service to do certain kinds of things but of course at a local level they have autonomy and at the local level they say, particularly social services, we haven't actually got the money to do this and therefore the whole thing is batted backwards and forwards between central and local government. Do you really have an answer to that? REDMOND Well I think - I think our organisation would say there has not been enough investment in social care, there is not enough support for people living with long term conditions, that is well evidenced. I think what we also can see though is there are opportunities for people just to do things differently. If Joan and her family were listened to properly that service would not continuously break down. Her son has very particular needs, he'll be a very particular child and they should really listen. So there's a lot of waste goes on with people not giving a very responsive service as well. WHITE I want to go to Geoffrey Droyden, who's calling us from Northumberland, really about information I think Geoffrey. DROYDEN Yes. WHITE Do make your point. DROYDEN It's taken me - I've looked after my mother now for six years, she's 87 years old, and along the way I've had to cope and learn how to cope with Alzheimer's and my greatest problem was getting the information and learning how to do it and cope with this. WHITE What kind of information? DROYDEN The information more about Alzheimer's and the state and also for caring how to put her in basically to day care originally and then finding out more about longer term care. WHITE And who have you tried, have you tried Carers ... DROYDEN The social services did come round in the end and gradually along the way I've learned how to do it. On other points from your callers that have been made, my pension is well - I believe 拢45.13, it just arrived in the post this morning funnily enough ... WHITE That's the carer's allowance? DROYDEN No, that would be my pension, I've been informed when I eventually retire and come to retire, that's what I will get. WHITE I understand, that's all you've had the ability to build up under the circumstances. DROYDEN That's correct. WHITE Yeah, I understand. I want to go to - thanks very much for your call - I want to go to Linda Smith from Guildford, also on the issue of information. Linda, good afternoon. SMITH Oh hello, it's nice to talk to you. I'm a recent carer really, my husband was discharged into the care of me and the stroke team last August and I must say, before I go on, that the support that we have had for him - his physical and mental wellbeing - is excellent. But I have found, now that I'm looking for respite care, particularly for him - he's got an active mind, he's a young 65 year old - finding suitable respite care has been quite difficult and I've not really had a lot of help, that's perhaps the wrong word, but I haven't actually found it easy to find the information. WHITE I mean is that because it isn't - is that because the help isn't there or the information isn't there? SMITH Well I think it's just that I perhaps haven't spoken to the right people. I've been given a booklet but it's mostly for nursing homes for more elderly people or people with Alzheimer's or dementia or just old age and he is, as I say, he's got aphasia but he can communicate, he does need sort of 24 hour care, but I don't really feel I could go away for a break and leave him if I wasn't happy about the stimulation he was getting. WHITE Linda, just stay on the line a minute, I want to pick this up with you Imelda because we did this - we talked about carers a few months ago and one of the things which came out of that, we had similar calls to the two we've just heard, from people saying I didn't even know about carer's allowance. Now it's all very well to say it's social services, surely that's part of your job isn't it - Carers UK should be telling people about all these things? REDMOND It is our job. It's ... WHITE So why don't these people know you're there and the kind of help you can offer? REDMOND Well one of our manifesto wishes, if you like, for the next government is that they would fund a proper helpline, freephone helpline, for people across the UK to be able to access at the point at which they need it, that would have experts on benefits, employment rights, on social care, on health and really helping people through the maze of the very complex benefits and social care system that we have. That currently - we run a helpline at the moment but the demand is so enormous that we can only deal with something like 20% of the calls. So I think - I mean both Geoffrey and Linda make a really good point, I couldn't agree with them more. WHITE Let me just whizz back to Linda very quickly. Have you known about Carers UK for example? SMITH Well I found out sort of subsequently. I think what happens, when this happens to you - my husband had a severe stroke and was hospitalised for a while before he had rehab - you're not really in a state to absorb or people don't feel it's appropriate to talk about those sort of things. And I think if you could be handed a package that you could share with your family and your wider friends where they could go through it and say to you I think you're at the stage now where you need to phone this or do this, because I understand a social worker or a support worker can't be with everybody all the time. But I think it could be made easier to implement if it was sort of from the point of the people who are going through the trauma. WHITE Okay, and perhaps there is that - almost that feeling that first of all it's too soon to give the information, then it's too late, people kind of assume that you've got it. SMITH That's right, yes, yes, they assume that because you're coping and everything's going ahead that you know about these things. I mean it was carer's support locally - I just happened to find the number on something that I was handed and I thought oh I'll ring them and they were marvellous, they came round to my home and made it very clear it was me they were supporting. WHITE Okay Linda thank you very much indeed. So more information is another of our manifesto pledges that people would like to see. We have other suggestions which have come in, John has got them. WAITE We have indeed Rosemary Bore cares for her father who lives in England, while she lives in Denmark and Rosemary e-mails to say: I'm caring for him for two weeks out of every four. This is working well but the direct payment which we're receiving is not allowed to go towards travel costs. I'm running up a lot of travel costs coming to and fro from Denmark which I have to pay and it's not fair, she says. She adds: I don't want any money for caring for my father, just the travel costs would be enough. Kathy Woods from Hertfordshire has been caring for her mother since 1989, she writes: You take grotty jobs to fit in with your caring because of the grotty jobs I've done I've been unable to have pensions, I know I'm going to retire to poverty through no fault of my own, carers need a proper income and should get a proper pension. Vera Lustin says she disagrees with the assumption that carers choose to do it: I don't think people really opt to give up work, income, social contacts and health in order to care for loved ones, they do it out of love but they desperately need the three Rs - recognition, recompense and respite. WHITE Okay, let's - one of the things that perhaps is less well appreciated is that quite a lot of carers do actually work but they find considerable problems in doing so. Andy Holden is on the line from Bracknell, Andy good afternoon. HOLDEN Hello. WHITE Yeah, what's your situation? HOLDEN Well the situation is that I had a job for four years and when the company decided they were moving to another area I felt it would be too much bother to go with them and I was considering finishing my job with them anyway. WHITE You were a carer while this was going on were you? HOLDEN Well in a - I was caring - I was just looking after my mother but I wasn't actually doing full time care, it was a low level thing. But what happened was that just as I was about to make the decision to move to another job my father had to go on to dialysis and it was completely unexpected and I wasn't sure if that would involve me in a lot of care for him in the initial phase so ... WHITE I think the problem's been that you've now, having taken some time off, you've wanted to get back and found it difficult to do so. HOLDEN Yes, because I took a year out, I thought out of consideration to any future employer, I didn't know if I'd need to spend time caring for him, so basically I took a year out and now after applying for jobs I'm finding it - a lot of prejudice against - well I think anyone who takes time out for whatever reason but I think it's deplorable that if you take time out to care for someone so that you don't inconvenience a future employer when you go back you face ... WHITE You feel you're penalised. HOLDEN Yes that's right. WHITE Andy thank you. Josephine Martin from the Isle of Wight, also on work and this issue, Josephine good afternoon. MARTIN Oh good afternoon Peter and thank you for calling me back for the programme. Yes may I just comment that I think most people know, some may not, that not all carers do receive an allowance from the government. I expect people are aware of that, I hope they are. WHITE Well I'll get Imelda to possibly clarify that. But I mean ... MARTIN No this is true, this is fact - this is fact - not all carers receive an allowance from the government, I don't. WHITE And why do you not? MARTIN Because my husband is, the person I care for, he receives disability living allowance at the lowest rate, so that means whoever is his carer, which is me, does not receive carer's allowance. So I hope that's dispelled a myth that some people might inadvertently have been subscribing too - we don't all get money from the government. A lot depends on that ... WHITE Okay, before you go on that, I'm just going to get Imelda to comment on that because I mean one of the things I think that - one of the criteria that is required is that people do receive some kind of specific benefit, in other words that you are required to have some kind of evidence that someone needs care for example. REDMOND For 35 hours a week or more. Yes, I mean Josephine is right, not all carer - we talk about six million carers in the UK, a small proportion of those are getting the very small allowance of 拢47 a week or 拢45 a week. There are many rules associated with claiming the benefits, as there are with all benefits, some will include age, hours cared, hours that you work yourself, there are many, many people that are excluded. I think the very first caller, Jill I think, actually raised this ... WHITE Jill Bull. REDMOND Yes, she raised this issue as well. When you're in work you don't get carer's allowance, if you don't care for a certain number of hours you don't get the allowance, it's very complicated, there are many, many carers who don't get any recompense at all. WHITE Okay. I want to go to Trudy Cockburn next. Trudy, good afternoon. Hello Trudy. COCKBURN We're another case that falls through a loophole, a different one. We've got - looking after my mother for 10 years, she's disabled, 88 years old with dementia, and luckily she has three daughters and we all take it in turns to look after her, so it works out at four months a year each. But in order to claim care allowance you have to prove you are a sole and continuous carer. So we can't claim, any of us, although we can't go out to work because there's no job that will allow you to stop every couple of months to look after your mother. WHITE So in terms of proposals that we could actually add to our manifesto you're actually saying that these rules are too restrictive are you? COCKBURN They are because one of us could claim state - that we do four months and then claim for the entire year and pass it on to our sisters. The point is we could do that illegally but mother of course when she travels she sees district nurses, doctors, so we can't sort of go the back way and do it, so we can't actually fill in a form that claims we are the sole continuous carer. So none of us get anything. Although mother's been kept out of hospital for 10 years and saved the state a lot of money. WHITE Okay, thank you very much indeed for that. Gina Curtis is calling us from Leeds, Gina has cerebral palsy and also I think has a carer. Gina, good afternoon. CURTIS Yes, good afternoon. I broke my ankle and my carer hasn't had a rest since I actually broke it, we've tried to get respite care, we've tried to get everything. WHITE And how long has that been? CURTIS It's since the 1st April. WHITE Right and I think Ben is there, who is your carer, if I can just put Ben on the line. Okay? I mean the point basically here ... BEN Afternoon. WHITE Afternoon. It's the amount of time that perhaps carers go without respite, that's the point that Gina's making really. BEN Yeah it's a strange situation, I've been surprised because in my sense I feel that to an extent we've taken a load from the state - they're not having to pay for Gina's home care and social services have decided that I'm sufficient to look after Gina - but added to the cerebral palsy and dystonia that Gina suffers the broken ankle means that I've been on literally 12/18 hours a day since last October. And our efforts to get some kind of emergency care since the broken ankle have all resulted in absolute failure, even abandoning Gina in St James's infirmary in Leeds produced no result at all apart from promises of phone calls from social workers which never happen. The external costs I can imagine I've spent time talking to doctors, health workers, back to social workers, back to the plasterer in this little incident has cost fortunes. WHITE Okay, Ben thank you very much. And Imelda, very briefly, if you can only have one of these proposals what do you think the key proposal that you would want in your manifesto would be? REDMOND Oh I can't just have one because I think there's a thing about people - life long poverty I think is the underlying thing, so work and benefits and pension are the thing that we would want the next government to tackle. WHITE And perhaps the point about pensions is the one that came out most strongly from the callers that we had today. Thank you for all your calls and Imelda thank you very much for being our guest. Back to the Transcripts homepage Back to the You and Yours homepage The 麻豆约拍 is not responsible for external websites

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