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	TX: 31.01.08 - Care in the UK: Live from the 91훑괵 Radio Theatre PRESENTERS: PETER WHITE AND JANE GARVEY

	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 91훑괵 CANNOT VOUCH FOR ITS COMPLETE ACCURACY. WHITE Hello and welcome. Whether you're elderly, disabled or looking after mum it's been a pretty thought provoking month and what everyone agrees is that the question of how we support vulnerable people to be able to stay independent must be addressed as we live longer but not necessarily healthier lives. CLIPS I think it ranks along with the pension problem and it's one which is more difficult to deal with in some ways. I don't think the social welfare departments of local authorities have any concept of the amount which is needed to be done, I think they hide their faces from it because they know they're not going to get the resources to do it. What's very clear is that this system belongs to another world, it belongs to the past. I think we're on the cusp here of the most fundamental change in social care since the welfare state came into being 60 years ago. And it's essential that we get this right. I believe that in a hundred years time people will look back on the way that we treat the elderly now with the same kind of shock and horror that we look back on child labour and think - How could they have done that? GARVEY Well that's the TV presenter Tony Robinson, the social care consultant Melanie Henwood and the former MP Lord Tebbitt, who of course with his wife Margaret was injured in the 1984 Brighton bombings with just some of the opinions expressed during our Care in the UK series. Now your e-mails, texts and phone messages are contributing to the government's consultation on how to fund social care, indeed the Prime Minister did tell us he genuinely welcomes your feedback. Ministers, it seems, do want to know how much support you're getting - earlier this week Ivan Lewis, who's the minister for social care, announced a review into the inconsistencies of provision. Suppose, he said, you went to see social services about your mum, perhaps her needs weren't that great or her means were above £21,000, it's likely you'll be left on your own and told no help here gov. WHITE Well Ivan Lewis is here and can speak for himself. Also on our panel is Sarah Pickup, who's director of adult care services in Hertfordshire and she's joint chair of the resources network for ADASS, that's the Association of Directors of Adult Social Services and Peter Beresford, who's professor of social policy at Brunel University in Middlesex and a former service user himself. Ivan Lewis, let me start with you, you've made many announcements of reviews of how things may be improved in the future. Today, though, we want to concentrate on what can be done to make the experience of those using the social care system now better. First of all, can I ask you all this - Ivan first - have you experienced how the service works at first hand yourself? LEWIS I guess I have in a way. I spent my whole working life, before I went into Parliament, from the age of 16 to the age of 30 working in social care for local voluntary organisations in the Manchester area. I set an organisation up working with people with learning disabilities and then I ran a charity in Manchester that had been a 125 years old and frankly needed changing in terms of what it was offering to people. I also have had some family experiences in recent times in terms of needing care and support for a family member. So I have been to some extent at the sharp end of ... WHITE And was it satisfactory? LEWIS Oh it was variable, some of it was brilliant, some of the professionals you come across are amazing people - caring, committed, dedicated - but some of the bureaucracy, some of the unintended consequences, some of not knowing where to go to get the right information, being told what you can't have rather than what you need, feeling that you want somebody on your side when you're having to make numerous phone calls and navigating your way through an incredibly complex system. WHITE So you do know what it's like. LEWIS It can be really difficult. WHITE Let me bring in Sarah, they say if you run services you only really find out how they're working if you have to use them as a consumer, what about you? PICKUP Well I'm lucky so far I haven't had to be a formal carer directly for somebody. But I have watched my grandmother care for my grandfather who had Alzheimer's until he died; I've had one grandmother in a care home; another who was supported at home until she moved into hospital and again died. And I think the thing about this is it could be us, any day it could be us, and when we're working in the social care system what we've got to really think is would this be acceptable to you, your mother, your grandmother. WHITE And Peter Beresford you have been a user of the services. BERESFORD Yes I've had 12 years experience of the social care and health psychiatric system, the gamut of in hospital stay, outpatients, psychiatry, psychology, social work, occupational therapy, physiotherapy and so on and so on. Some brilliant experiences, like the minister, some awful ones. What it's really taught me is that the people on the receiving end have to be absolutely central in taking forward and reforming social care. WHITE Professor Peter Beresford, Ivan Lewis, Sarah Pickup we'll come back to you all but thank you very much indeed. GARVEY Well throughout the Care in the UK season you've been telling us what you think about the current state of social care and how you'd like the system improved. You've been e-mailing, writing and of course posting on our messages boards, thousands of you have taken the time to use the Care Calculator to find out how much care people are getting on average in England. Many of you have told us you've been quite surprised by the results. Eight thousand of you have done the Care Calculator and almost 3,000 of those have filled in a care questionnaire with views on the system, how to pay for more social care in the future and the sort of help unpaid carers should get. Well our reporter Carolyn Atkinson is with me now. So Carolyn, just take me through what people were saying. ATKINSON Well the feeling of those who responded - and of course we must say this wasn't representative of the population as a whole - but the feeling was that in general the current system is inadequate. Many other people felt that the levels of support, in terms of care for elderly and disabled people that was currently available from the councils, was actually much worse than they expected. GARVEY And what about suggestions for funding? ATKINSON Well many people were very positive towards the idea of paying more tax to help fund this social care and of the people who gave their views many of them were under 65. Now others thought that a system where the government paid a set amount to people who needed care would be a very good idea. GARVEY And what about people with savings? ATKINSON Savings - that's the tricky one. There was a sense that counting people's savings when assessing who pays for care and who doesn't was not a good idea, people did not favour that. At the moment, of course, if you have twenty one and a half thousand pounds or more you generally don't get any council help, you don't qualify for any council help with paying for any care that you do need. GARVEY And of course, as many people in this room and indeed listening at home will know, millions of carers in Britain are not paid and they're not happy. ATKINSON These are the unpaid carers, the informal carers. Many people did give their views on how to help some of these people. There are currently six million in the country and people were very keen to see things like improvements to the carers allowance, that's currently under £50 a week for some carers who qualify for it, people would like to see that increased. And other people suggested things like more help with getting respite support, they thought that was very important. GARVEY Alright Carolyn, for the time being, thank you. Professor Martin Knapp is from the London School of Economics. Now Professor you helped to compile the questionnaire and you've looked carefully, I think, at what was said, what do you make of it? KNAPP Well firstly I'm delighted by the enthusiastic response we had to it - as you say 3,000 people able to put their views, they were service users, relatives and lots of other people that aren't perhaps directly connected to the system but are very keen to make their views known. So it's good to have that opportunity and to feed that into the wider discussion. GARVEY How much positive feedback was there then? KNAPP Well there was positive feedback but I think a lot of people were expressing, shall we say, surprise or weren't aware of the arrangements that were in place, they were surprised - as Carolyn said - by the inadequacies of services for many people. GARVEY What inadequacies came up time and time again? KNAPP Well I think the levels of support that were available for people with different types of need, the questionnaire allowed you to pretend to be a person with a particular set of characteristics and it showed you what level of support is typically available for somebody with those - with those needs. And isn't necessarily very heavy support, very great support. GARVEY What kind of little things would make the difference between I suppose an existence and a life? KNAPP Well I mean in relation to informal carers, for example, one of the strong messages that comes out of the questionnaire is that many people would support greater financial support for carers through grants and benefits and saw that as a very important element because it recognised the heavy responsibilities that carers were taking. GARVEY What about the government's feedback and how and what it should do with the information in this questionnaire, what overriding concerns have the government just got to do something about quickly? KNAPP Well firstly, yes many people are saying the services are not very adequate and a lot of the respondents were people that were younger people not actually using services at the moment, so I think it's interesting that people outside the system were making that kind of judgement, not just people, for example, people here today who have a very good knowledge of the system. So that's one. I think secondly, that if this survey had been carried out say 20 years ago we wouldn't have had the same expressed willingness to pay higher taxes. Now what people do and what they say might be different. GARVEY Well we know that in fact a lot of people say they're going to pay more tax and then the time comes round and guess what - nobody votes for it. KNAPP No I absolutely can see that. I think if people could see a closer link perhaps between the taxes that are being paid and the sort of services that are being provided maybe that would be an easier sell but I mean that's why I'm not a politician. GARVEY Thank you. That's Professor Martin Knapp. And you can still take part, by the way, and fill that questionnaire in, it is on the Care in the UK website, just follow the links from the You and Yours website. WHITE And of course the key issue is here one of eligibility. Dame Denise Platt, the chair of the Commission of Social Care Inspection, who's with us here in the audience, has described social care as the support that an elderly or disabled person needs to take part fully as a citizen. And she also called today's situation a tale of two systems - those who do qualify for social care and those left bewildered and unsupported because they don't. Three out of four councils in England are now only offering social care to those assessed as having critical or substantial need, or in other words those who would find it very difficult even to survive or have certainly any kind of life without help. And this week's report by the commission confirms that this means that many people with moderate or low needs are actually falling through the net, either missing out on services altogether or losing services they'd come to rely on. GARVEY Well eligibility is certainly a recurring theme among the listeners. Edward Platt from Sonning Common in Oxfordshire e-mailed in on behalf of his wife. Now he said: I don't want any changes, things are fine with us. He said his wife got help with washing and with dressing every morning and every evening and regular assessment every six months. But you won't be surprised to hear that not everybody was quite so cheerful. John Dent from the Midlands claims that his council told him they couldn't fund care home fees for his mother, who's 93, until - and I quote: "More people died to release funds". Well Daniel Bury is from the MS Society, Daniel you have a point to make a question. BURY Ivan Lewis has already admitted that the current system isn't working and he's promised a review, my question for Ivan and the others is can they give their views on how any new system of care assessments may work and I'm also including people with fluctuating care needs, including some of the 85,000 people with MS? WHITE Okay. Well Ivan Lewis, first of all, you and I talked only on Tuesday about the inconsistencies in how councils have evaluated need and you did admit that people who should be getting social care aren't, so what do you think the criteria should be? LEWIS Well I think the first thing is we should focus on the individual and their family unit and what extra help they need to have the maximum possible quality of life. Let that person have as much control and say as possible about where they want that support and care to come from. And I believe increasingly that will be through personal budgets. And then move on, having done all of that and having worked out the package, to agree between the individual and in this case the local authority or if you like the state who should pay what, what is a fair share of the cost between the state and the individual. And under the current system some of that is related to means. All too often now what happens is if somebody comes along and says I need help and at a glance a social worker says well you've not got that greater level of need or you've got lots of money you're told you're on your own, there's no help here and that's what I meant by saying we have got to get rid of the no help here culture as well as - as well as having a fundamental review of the whole funding system. For two reasons: one is we're living in a society where people are living longer but also people rightly have different expectations now, the vast majority of people want to live in their own homes and not to go into institutions for example. WHITE Can I pin you down on this Ivan because where would you draw the line, I mean Dame Denise Platt said - use this phrase about citizenship, that it's about being a citizen, now that includes people who need support to go out to visit friends and it might mean going to an art class, so should they qualify, are we going to have to make those kind of decisions or are you saying it can simply be ...? LEWIS I cannot believe that we have ended up with a system which essentially says if you contact the social services and say my mum is a bit lonely and a bit isolated and is starting to deteriorate you are told that is low level need. Instead of being told there is a voluntary organisation down the road, there are befriending clubs, there are friendship clubs, there's other places where people meet, perhaps we can arrange for somebody who lives in your neighbourhood to visit - visit that person and to build friendships and network groups. And because we've got this eligibility system, this rigid eligibility system, instead of recognising that there are lots of things that contribute towards people's quality of life, not just .. WHITE So we are talking about using other agencies rather than actually providing the money ... LEWIS It's focusing on what the person needs to have the best possible quality of life. Look it isn't the state's job to provide somebody with a friend but it is the state's job, and any decent communities job, to make sure that no elderly person is left living alone without any friends. WHITE Minister, can we go to somebody, we've got a questioner in the audience to put a point. GARVEY Melanie Henwood, who's a health and social care consultant. Melanie, you are a truly independent voice are you? HENWOOD I am indeed, yes. GARVEY I just wanted to establish your credentials, that's fine. So just tell us a little bit about your response to what you've heard from Ivan Lewis. HENWOOD Minister, I really welcome you recognition of the problem that we've got with this system with eligibility criteria. I just want to ask you one question though about that. You've said that we need to review the system, isn't the evidence already compelling, haven't we seen the evidence from the Commission for Social Care Inspection this week about the nature of the problem with eligibility criteria, isn't the thing now that we need to have an alternative system and get that in place as soon as we can? WHITE Can I get a question - because I thought that's the question I should have asked you the other day minister and haven't we had a lot of reviews and is this just playing for time and kicking the ball into the long grass? LEWIS As far as I'm aware the eligibility criteria per se has not been reviewed for years and the unintended consequences that have flowed from this rigid set of eligibility criteria. But let's be clear about this - this is not all that's happening. From April is the transformation programme going to begin in every local community in terms of the way social care is provided, shifting to early intervention and prevention, better information and advice, a closer relationship between health and social care, a much greater expansion of personal budgets. And also in the spring of this year the Prime Minister will be announcing a new deal for carers, we are working on a national dementia strategy - the first one ever. So the review of eligibility criteria is only part of a major programme of change that is going to be taking place in social care in 2008 and not before time. What's really important is when we replace this eligibility framework with another one because we'll need some kind of national framework to guide local decision making, we'd better get it right and make sure it doesn't continue to lead to unintended consequences so of course we need change but we need to get that change right. WHITE They haven't got long to put their points to you because you're going at ten to one. Let's have someone in the audience. GLASMAN Claire Glasman from WinVisible - Women with Visible and Invisible Disabilities. I'm a home care user and I'm also often a carer for my elderly parents. Minister, the policies you say you can't believe are government policies that were brought in under New Labour - the fair access and the charging policies. People are attacked as getting something for nothing if we are in the position of needing services but we have really suffered from rationing, privatisation, the charging policy which was said to be fair was about entrenching charging, taking money out of our disability benefits and we in fact work very hard, pensioners have worked their whole life, people with disabilities work very hard getting around an inaccessible world, we're also being attacked by the welfare reform policies, being criticised for claiming incapacity benefits .. WHITE Claire, let me give you a chance to get an answer, particularly ... GLASMAN .. what's going to be different about these, people are not naive, what is going to be different about these reviews, you know and it's really a shame, you come from the voluntary sector and you're the one fronting these polices - shame on you. WHITE Fair access to - fair access to care minister, came in only a few years ago, Labour well entrenched by then, she's making a fair point isn't she? LEWIS No, the clamour was that people said because of what was going on in terms of differential experiences in different areas that the government should step up to the mark and provide some level of national framework. It was actually a really brave thing to do because we could have simply left it to individual local authorities and said nothing to do with us. Now what I believe has happened - we also introduced, by the way, the first ever carers grant to every single local authority in this country which didn't exist before this government came into office. But what is true is that there is a growing demand out there in terms of the kind of services that people want to have independence and to have maximum quality of life. But there are many, many disabled people who I know personally who given the right level of support would actually want to work if they could work. So the idea, just because disabled people have a disability they don't want to have the opportunity to participate in employment, is a complete distortion of what many disabled people say. And all too often the system assumes and traps people on benefits, not actually incentivising and allowing them to seek employment. And for many people employment is a route to dignity, it's not the right answer for everybody. WHITE There is a care allowance ... [AUDIENCE NOISE] Sorry, we didn't quite catch that, say that again. GLASMAN Is that why the government is closing Remploy factories and making disabled people unemployed? LEWIS I'll deal with that head on. First of all, over many, many years Remploy has done an incredibly good job for a significant number of people but there are so many disabled people who don't want to work in sheltered factories just for disabled people, they want to go and work in workplaces like the vast majority of people in this room have the right to work in - in offices and businesses and charities and public services. So I don't like this patronising presentation of disabled people from wherever it comes because I meet so many disabled people who want the equality of citizenship. WHITE We are going to move on from the issue of employment because that is a slightly different one to the one that we're dealing with today. But of course as many of you will know it does boil down to money, as many people think, not enough to resource the care everyone needs, never mind what everyone would like. And at the coalface of caring it can be a real struggle. GARVEY Kathy Pile e-mailed Woman's Hour to tell us how she took a part-time job so she could look after her elderly mother. She only earned £72 a week but she had to give it up when her mother got worse. Then she had to live off her own savings before she could eventually claim carers allowance. Frances Withers is a carer, she points out that the carers allowance amounts to less than £7 a day, for, which she describes, as the most isolating job in the world. Well Sheriden Humphrys, welcome to You and Yours, thank you for coming in, just tell us a little bit about your personal circumstances. HUMPHRYS Well recently I was talking to my local benefits agency and the advisor said you're in what we call the poverty trap. The reason for this is I'm a carer of a disabled child, who's aged eight. When he was five I gave up my job, even though I was working for an employer with very flexible working terms, because my son had been excluded and abused at school in the same week. I'm happy to say things have improved for us but I'd like to ask the minister, I welcome this kind of consultation and it's very pleasing that the government is asking for my feedback but I feel like for the last eight years I've been constantly asked to give feedback and I've not even earned so much as a Marks and Spencer's voucher for it. So since I'm such an expert I can tell you how much a statement of special educational needs costs to assess, I can tell you how much it costs to take a case to the SEN tribunal - I wasn't paid to go myself - and I can tell you how much a respite care assessment costs and how much direct payment I get. As I'm such an expert why am I not paid for my expert opinions in this consultation? GARVEY We will get on to that I promise but I think you are one of those people who has no choice - you can't work, even if you wanted to, you can do part-time work but it's a constant struggle. HUMPHRYS I work freelance without the security of employment and I'm in a position - I work freelance from my home opposite the school where I can drop my - drop work, drop my pen and go to the school or go to the hospital at the drop of a hat. GARVEY But that's not something you would have chosen is it? HUMPHRYS No given the opportunity I would have put away some savings if I'd been warned I was going to have a disabled child, I would have prepared in advance but I don't think that's an option. GARVEY You mentioned your employer and said that they had flexible working practices, we won't mention the employer, but was that only in theory or did they quite badly let you down? HUMPHRYS I think it was in theory - the employer's flexible working practice - and particularly the policy with regards to carers and disabled children was hidden deep in the HR policy under a section entitled: Flexible working up to the age of - your child's age five. There was a sentence in brackets saying: Parents of a child who's disabled can take unpaid leave up until the child's 18. But that was - I always thought that should be a separate section of the employment policy not hidden under the age five. GARVEY Sheriden Humphrys, thank you very much and thanks for telling us your story. We're just now going to get a question which I think will probably get the support of many people in this room and indeed listening elsewhere, it's from Patricia Weaver. Patricia, you're from Wiltshire and you and your husband care for your son, don't you. WEAVER That's right, yes, we have a 35 year old learning disabled son and I was shocked when I became a pensioner to discover that my carers allowance was stopped. If you're a pensioner you can't have a carers allowance, you have your old age pension and that's it. GARVEY But you must be able to apply for other allowances? WEAVER No, there are no allowances for carers who are pensioners. You carry on doing the job but the state doesn't recognise that you're doing it. GARVEY So you become more elderly and your job becomes harder but your money's taken away? WEAVER That's quite right, yes. In fact I know 80 year olds who are looking after their 60 year old disabled sons and daughters with no recognition from the state at all. GARVEY Patricia Weaver thank you very much. WHITE Minister, where is the logic in that? There are various things there, you mentioned the carers allowance but as we've heard people say it's under £50 a week or £7 a day, if you compared that say, for example, with foster care where you can also go on working as well - £100 a week for a baby going up to £150, it varies with age. So you know we do not seem to give a very high priority and this is money - this isn't local authority money, this is the state's benefit system. LEWIS As part of the new deal for carers we've had a major consultation with carers, that's come to an end now and we're working on the package that the Prime Minister will announce. He, three weeks ago, spent an afternoon in Leeds with about 70 carers and one of the things that came across from them time and time again to him, myself and Alan Johnson was this question of carers allowances. And the reality is what has changed is, as you say, is that now there are so many people who are of pensionable age, who are fulfilling caring responsibilities because disabled people now have full and long lives, whereas in the past if you were born with a disability you'd probably have a shorter life, because of conditions like dementia you've got husbands and wives often ending up caring for their spouse because of those kind of conditions. So one of the issues we're looking at in terms of - the two major issues in a sense we're looking at - in terms of a new deal for carers is the question of income, the allowances and income that carers receive. And the second issue is guaranteed reliable respite care. WHITE So can we take the specific point of people over 65 here? LEWIS Well that's one of the issues that has been raised with us time and time again .. WHITE So are you going to change it? You must have a clue. LEWIS Well if I announce the new deal for carers in advance of the Prime Minister not only wouldn't it be a great career move, it would demonstrate that we hadn't actually been listening to people, we hadn't been weighing up all the options and we've got preconceived decisions. We now have had all the consultations, it's all finished, and we're looking at what the priorities that carers themselves have identified on the question of income, respite care, better information and support, being treated with respect by professionals - because often carers are treated frankly with contempt by professionals - and of course the new phenomena of young carers and also double carers - there are many parents now who are caring for disabled children, for example, who are also caring for an elderly parent. And can I respond to Sheriden's point .. WHITE Can I just ask you - if you can't tell me how and whether you're going to do it, can you tell me when, because there seems to be a lot .. LEWIS In the spring the Prime Minister will be announcing a new deal for carers, the work's being done at the moment. WHITE Okay. Right I think we're going to have to.. LEWIS Spring of this year. WHITE Spring of this year. LEWIS Yes. WHITE And we'll have concrete announcements with concrete proposals about benefit changes presumably because that's what you'd have to do. LEWIS We'll be addressing the questions of income, of respite, of better information, of carers being treated with respect by professionals, recognising that to be a carer also has an impact on your own health and often the health service doesn't reflect that in the kind of care that carers get because we know that carers health can deteriorate because they're fulfilling these - I mean it is remarkable - we don't understand if you're not a carer what it's like never to be off duty. I always say this to people - there's the practical burden it places on people but there's the emotional fact that even if you have respite you're constantly thinking about - is the person you love getting the care they need. And we really need, as a society, it's government yes but also society, to understand the fact that people who spend a very high proportion of their life looking after somebody else deserve better support than they've had in the past. WHITE Ivan Lewis, thank you very much, I will bring the other two panellists here - in soon, you haven't just come along as decoration I assure you. LEWIS Can we not deal with Sheriden's point? WHITE Not yet we can't because we've actually got to go to the World at One who have got a little programme to put together themselves, so they need some time. Lots more views and questions to fit in before one o'clock but first of all the World at One, what's in it, with Martha Kearney. And the good news is clearly the tenor of your questions has been so provocative that Ivan, I gather, you can stay with us right till the end of the programme, so we're delighted to hear that. You're listening to You and Yours with Jane Garvey and me, Peter White, from the Radio Theatre in London. A distinguished audience of Woman's Hour and You and Yours listeners and a distinguished panel too. Sarah Pickup is director of adult care services in Hertfordshire, Peter Beresford is professor of social policy at Brunel University in Middlesex and a former service user as he said and care minister Ivan Lewis is here too. Now there's no doubt that care is now high up on the government's agenda but what about the other political parties? Natalie Tarry is deputy director of the Social Market Foundation, the independent think tank, so what can you tell us about the other parties and their attitudes? TARRY I think you'd be pretty surprised to hear but I think the three parties actually have all differed surprisingly little over the fundamentals of social care policy. I think it's fair to say that there is general agreement amongst the parties that the current system is unsustainable and in need of reform, as we've heard - as we've heard previously. And that there is also a consensus that the empowerment and personalisation we've seen through direct payments and individual budgets is really something we want to pursue and it's the right direction of travel. But there are of course differences and those differences are largely around the funding of the system. We've heard pretty little from the Conservatives so far how they would envisage a future - the future funding of the social care system to work, other than that local residents would be allowed to veto local council - council tax hikes, something that might leave us with even less money to spend on social care of course. We've heard much more from the Lib Dems, not least in the recent week, that the traditional Lib Dem stance is of course free care for all. Nick Clegg announced last week that the Lib Dems would put £2 billion into the funding of a future social care system. Two billion pounds might leave us short and in fact might still leave us with a means tested system and only a fully funded system of care for a few, pretty much the system that we have now. So maybe not so much difference after all. WHITE Okay, Natalie Tarry thank you very much indeed. GARVEY I just want to provide some more food for thought from the front row here at the Radio Theatre and I've got my own little panel here. Four distinguished people who have precisely a minute to tell us what they'd like to see changing. And first up we've got Amanda Waring, who's an actress, a filmmaker and, Amanda, a campaigner as well. WARING Yes my mission, if you like, is to ensure that older people are seen as valued individuals and that society embraces and listens to all the generations. And the disconnection that has occurred in British culture needs to be addressed. Loneliness is the route cause of much suffering in later life and we need to rediscover community and achieve balance between independence and interdependence. And our elders are our history keepers and as a society we can't know where we're going without knowing where we've been. So the sharing of life stories and personal histories between the generations is absolutely vital. I want to reignite our humanity in caring and also through the film that I made in memory of my mother - Dame Dorothy Tutin - I'm trying to engage the hearts and minds of care providers to help them understand that compassionate care is as important as good medical practice. That emotional intelligence and empathy when caring for the elderly is vital for the nourishment of mind, body and spirit. And training of carers in this area and implementation of compassionate care must be seen as a priority as well as most importantly the value of the carers themselves. GARVEY Amanda, thank you. On now to Dr Ray Jones, who's a - Dr Jones is a former director of social services. JONES Well I want to speak about the link between the NHS and social care. And bringing the NHS and social care together is very important. The reason that we stumble over this at the moment is because the government seeks to fund the NHS at a level which is not matched within social care. And indeed when the NHS gets into difficulty with its money it passes its costs on to social care and local councils then pass those costs on to disabled and older people and to family carers themselves. So the comment that I'd like to make is that social care has been a bit neglected politically, it's been a bit neglected in terms of its funding, it's several steps behind the NHS and if we're going to work together sensibly locally that needs to be addressed. The difficulty we've got at the moment is that for the next number of years we know in terms of funding local councils will be stranded in terms of their funding from the government for social care while the NHS will be moving forward. That's not going to help good partnership working to bring services together. GARVEY Thank you very much for coming today. And now on Kalyani Gandhi who is from the Policy Research Institute on Ageing and Ethnicity. GANDHI We live in an ageing society, we live in a society that has got a large black and ethnic minority ageing population, significantly growing over the next 10 years, 10 fold. I'd like to see - I'd like to see a landscape where older people from minority communities can really take their place in society as a contributing force, rather than a traditional problem, as they've been seen so far. Service to date has still been patchy, we have not developed frameworks which are responsive and meet people's rights and ensure quality and equality that is on the same level playing field. If we're talking about a personalisation agenda into the future we need to really ensure that older people in minority communities, the diversity within the these communities, is recognised and respected so that cultural identity is seen on the same platform as mental and physical well being. I would really like to say at the end of the day it's about ageing with choice and ageing with dignity. Frameworks need to allow that. The respect and dignity needs to allow that and in the end nobody needs to live in silence. GARVEY Thank you very much. And finally on to Joanne McDonald who's a modern matron in mental health. MCDONALD My point really is about the basics of care in care homes, particularly for people with dementia and the good solutions are often the most simple. And lifestyle audits and the use of lifestyle stories really should be a statutory framework that we all have to consider, particularly before the dreaded tranquillisers come into play. Looking at people's likes, dislikes, habits, phobias, any idiosyncrasies that we all have, any fears and so on will be crucial to the person's quality of life, [indistinct words] to an existence of a life and these things really are very important. Using benchmarking tools, such as the essence of care, which is already out there, can help care homes if done jointly with service users and carers, when you're gathering your evidence be able and be in a position to compare the good care homes that have really taken the fundamentals of care seriously. GARVEY Joanne McDonald thank you very much. Peter. WHITE So treating people as people, that's the message there. As we heard earlier in the programme the government has launched an independent inquiry into social care to find out why tens of thousands of vulnerable older people are trapped in their homes, sometimes unable to wash, to dress or perform other basic tasks essential to daily living. It's also working, as Ivan has already told us, on a green paper on the funding of social care and remember your e-mails and calls will feed into that, we promise you. The government's other big idea is personal budgets, in other words you're given an amount of money, then you spend it how you want. A good idea? GARVEY Well not all of the people we've heard from think so. Let's get a question now from Drew Lyndon, who's from the Princess Royal Trust for Carers. Drew. LYNDON Thank you yes. Many carers do recognise and actually welcome the greater level of choice and control given to some disabled people or people with long term conditions over the care they have, however, there are concerns about the system. I'd like to know from the minister, and from the rest of the panel, how the government should ensure that carers are not left with a disadvantage or forced to take up extra caring responsibilities as a result of the individual budget system? WHITE Okay, let's not go to the minister, first this time, let's go to Sarah Pickup. As director of adult care services in Hertfordshire can we clarify this situation, first of all, I mean do people have a choice as to whether they have a personal budget, it's the big idea, is everyone going to have to do it? PICKUP Right, well I think let's be clear what an individual budget is. An individual budget is about being transparent about the resources that will be available to fund someone's care. And in that sense that is for everyone. An individual budget, however, does not have to be taken in cash, in a bank account, and go away and organise it all yourself. The council or other organisations can still assist you in getting the care but the key is that you know how much there is and you have a choice about how it is spent. It would be possible to misuse an individual budget system to reduce care but it would be a misuse of the system. It will not be because of individual budgets that carers are disadvantage, it is possible - as with any system - that they could be but the individual budgets are about personalisation, about choice, about transparency and they should be a good thing for everyone but without the transfer of responsibility that people do not want to take on. WHITE Okay, Peter Beresford, you've been a user, you've talked to a number of users over the years, how do you think individual budgets will go down and will it be - will it be more choice or more hassle? BERESFORD It really depends what we mean, it's no use having slogan words unless we know what they're going to mean in practice. And it really does mean, when we talk about individual budgets, we're talking about an allocation of money down to budgetary constraints, as has been the case for a long time, or whether we're talking about an allocation of money to enable people, as Denise Platt said in her report, to live the fullest life they can possibly can live, i.e. to make it possible for people to live independently and interdependently. That's crucial. The other thing is that as people have said to me, people in their 60s being asked if they want to have an individual budget or a direct payment for their parents, it's like running a small business unless there is a whole system and structure of support. So we hopefully can get rid of an old system of bureaucracy but we need to introduce a whole new arrangement, an infrastructural arrangement, of support, advice, guidance, advocacy to help people run these, so that we're not actually talking about offloading more work to carers. But can I put this in a broader context because we've been hearing about eligibility criteria, we've been hearing about integration between health and social care? And I think there's a fundamental problem at the moment which is perhaps why we have such difficulties in integrating two systems which are philosophically opposed. We've got a health service which still clings and which gets so much popular support from the aspiration to be free at the point of delivery and universalist. And we have still - and who knows what we may have later on in the year - a social care system which is very much a poor relation, everyone argues has consistently been under funded, which is based still on eligibility criteria and is far from universalist. So if we're talking about universalism, if we're talking about integration, then what I'd like to see really is social care which true to the spirit and the principles of independent living does follow on from the values of the health service rather than a health service start to be narrowed and constrained by the values of social care. WHITE So at the point of need. BERESFORD Absolutely. WHITE Yeah right. BERESFORD The true end of the poor law. WHITE I want to go to Julia Winter in the audience. Julia. WINTER I've been receiving services for the last 12 years. I started off having agencies where I had no choice over who came in my front door, how long they stayed or what they did. I then went on to direct payments, which were a great deal better, but were still very prescriptive. I've recently moved on to individual budgets and I have to say that they are much better and for the fundamental reason that they allow me to be the expert on me, I decide how I want my support to be. And I hear what some of the audience has said in regards to oh that's not going to be any good for everybody but I did work for direct payment support for two years and during that time I worked with a lot of older people who said I want to choose who comes in my front door but I don't want the hassle of the money. Individual budgets, to me, seems to be a perfect way of resolving that particular situation and I'm sure it will be popular with people once they understand it. WHITE And can I just ask you? Have you used it in other ways - you're clearly using it so you can employ your own staff, have you also done other things that would not have fitted under the old system? WINTER Yes I've been able to make use of informal networks of support, for example, probably not many non-disabled people employ someone to take them out for dinner but unfortunately lots of disabled people have to employ a PA to do that. What I've been able to do is to say to friends, well look if you come and pick me up, take me in your car, support me while we're having dinner I can actually pay for your meal, which is a great deal cheaper than employing a PA and also much more way of being able to make friends and also keep friendships with people that you may otherwise lost touch with. WHITE Minister, you've heard both sides of reactions, including that one from Julia where it's working, but you've also heard what perhaps will create a problem, which is some people think what the tabloids will do with the idea of paying for disabled people to go out dinner. LEWIS Well we can't allow policy to be dictated all the time by tabloids .. WHITE But people have got to understand what's going on haven't they. LEWIS The reality - the reality is that what we're doing with personal budgets is extending to people who receive public funding what self-funders and wealthy people have always taken for granted - the right to exercise control and choice. It's one of the most progressive policies that this government has introduced and I'm proud of it. But Peter's absolutely right, it's essential we build the infrastructure round it to make sure it's real for people. A. we give people the necessary help and support to exercise that control and choice, not simply give them a budget and say you're on your own, some people will need an awful lot of support, other people will need very, very minimal support. But my experience, through all the years I've worked in this area, when I first, at 14, started doing voluntary work with people with learning disabilities I was told all the things people with learning disabilities couldn't do and what I learnt was all the amazing things they could do if only they were given the opportunity. And I think it is so wrong to say about either disabled people or older people or people with mental health problems - they do not have the right to self determination. Some people need a lot of help to make that a reality but everybody, but everybody surely has the right to the maximum possible control and dignity in their own life. And when you meet older people, who are coming to the end of their lives, the one thing they hang on to right to the end is the ability to exercise the slightest bit of control which makes them feel good about themselves in incredibly difficult circumstances. So for me personal budgets are absolutely right but the devil is in the detail in terms of getting the delivery right so it really is about giving people maximum control and choice. All the evidence is by the way that when people are given that control the care they end up with is far better than the support they get by professionals telling them what they can have. And also interestingly they end up getting better value for money because they know better about either themselves or the person that they love than frankly any statutory agency will every be able to. WHITE Now on this programme - on this programme earlier we've also heard the Prime Minister, a couple of weeks ago, pay tribute to carers - those six million people who care for relatives or friends or neighbours - because the social care they receive isn't enough. Many of those carers are attempting to juggle their work lives and their family lives with the demands of supporting the person in need. GARVEY Well Sharon Coleman has a son, Oliver, who suffers from deafness and a rare breathing disability. Now she says that she was forced to resign from work as a legal secretary after being discriminated against by her employers. She says she was harassed and refused flexible working hours in order to care for her son. Well as you might already have heard in the news she took that case to the European Court of Justice and today - well the court has ruled on her claim. Carolyn Atkinson has the latest. ATKINSON Yes well Sharon Coleman has actually won her case. This was all about discrimination and specifically discrimination by association in this case with her disabled son. Now he was covered by the Disability Discrimination Act in this country but she, as his carer, was not. Now she says that her bosses criticised her for being lazy, for taking time off to care for him, she was forced to take annual leave to be with him when he was ill and she says when she asked for flexible working, so that she could care for him more easily, she was turned down but other colleagues with children who were not disabled were given permission to work flexibly. GARVEY And the wider implications Carolyn? ATKINSON Well this is being seen as an extremely significant ruling, many of the big carer organisations this morning are saying it will have huge implications for some of the six million people who are unpaid carers at the moment. This ruling means they now will have the right not to be discriminated against, if they're looking after someone who's disabled, even if they themselves are not disabled, that's the key thing. So it means that they'll be able to go to work, not to be excluded from the workplace and indeed not to be discriminated against in the workplace if they're caring for someone who is disabled. GARVEY Carolyn Atkinson. Now to Madeleine Armstrong, you are an Admiral Nurse Madeleine and you have a point about carers. ARMSTRONG Yes. In many parts of the country it is impossible to recruit and retain carers to enable people to stay in their own homes. Is it any wonder when care workers appear to have a low status in society, have little training and support, have no career structure and are paid a pittance. Caring for our older people is highly skilled work and this should be acknowledged if older people are to receive the care they deserve. I wonder how the minister plans to deal with this problem. WHITE Right, I can't put that question any better than Madeleine did, so Ivan Lewis what are you going to do about remedying underpaid and low morale workers? LEWIS One of the first things I did when I got this job was to ask Denise Platt to do a fundamental review of the status of social care because I'm very concerned that it hasn't historically had the status it deserves as a profession, as a career, as a sector. But right at the heart of this is the people at the frontline offering the care. In the end you can have all the best policies in the world, you can have the finest aspirations in terms of improving things but it's the everyday contact between the person providing the care and the person receiving it that matters, that is the bottom line. So any fundamental reform of this system definitely needs a fundamental look at the nature of the people who come into the care professions, at the way we treat them, the way we value them, the way we reward them, the kind of training that we offer to them. If we want quality we're going to have to have that reflected in the kind of workforce that we have. But that will also play into the debate, not just about how much is it going to cost over the next few years to continue providing what we provide now, this is also about how much is it going to cost to provide frankly a much better system to a growing number of people in the future. So if people want staff to be paid more that is absolutely fine and good but that will have to be factored in, in terms of when we talk to the public about the overall costs of a new system, we've got to make sure that we want better quality not just coping with the fact that we have a growing number of older people. WHITE Sarah Pickup, you've got to do this haven't you, you've got to do the resources basically. PICKUP That's right, councils are faced with making sure that there are employees out there to deliver the services that people want, whether directly or as recruited by themselves. Low pay is an issue, it is an issue with recruitment and one of the things that councils can do is ensure that there's good training opportunities available to staff who are working in this sector. Not just the ones that work for us but by working with the independent and voluntary sector. We have got an increasing number of the care workers who are getting national vocational qualifications, who are able to progress their careers through care. It is an exciting area of work, people do enjoy working with it - within it but we need to make that apparent to more people. There's also an onus on councils to make sure that the standards of care we expect in contracts that we put out on people's behalf are high, so that companies that are bidding for those contracts are employing the quality of staff that are needed to deliver those standards of care and in actual fact charging us the price that is required to deliver that. We do tender for our services, if we don't tender for good quality we won't get good quality. WHITE Peter Beresford, your concern - your primary concern - is about users but obviously the user experience is bound up in the people who do the caring. BERESFORD Absolutely and one of the things that so often service users say when they have comments to make about the workforce is to praise the efforts of the workers despite the conditions they know those workers are working under because they know there are so many committed and decent workers. And a project we're working on funded by the Joseph Rowntree Foundation has shown such an incredible level of commitment but we're talking about people who are on or near the minimum wage, people who are the equivalent in terms of professional treatment of sort of shelf stackers in supermarkets and that's why service users so often talk about the poor quality, unreliability, lack of respect, lack of privacy of the face-to-face intimate support they get. And I think we've got to seize the moment, we have a prime minister, unusually, who has expressed interest, we're getting headlines, we have a passionate minister here, we've really got to do something to challenge the present realities, we've got to strike when the iron is hot and we've got to demand the proper resources, the proper terms of working conditions and payment for these crucial workers. WHITE Thanks very much indeed. GARVEY Well all this month we've been hearing from people working in the care services. We've heard from politicians, we've heard from carers - indeed there's one trying to be heard now and we will talk to her later - and also of course from service users. I think it's fair to say that many people have been quite shocked by some of the stories we've heard and there is no doubt about one thing just about everybody agrees that care in the UK cannot stay as it is now. WHITE And fortunately that is all - unfortunately that is all we've got time to, thank you all for coming along, taking a note of all the questions. Ivan Lewis can I give you a great sheaf of papers, which all - let me pass that to you. We'd like to know - well we won't have time for you to tell us but we know that you are going to factor those into the green paper and the consultation document. Thank you very much indeed everyone. Back to the Transcripts homepage Back to the You and Yours homepage The 91훑괵 is not responsible for external websites

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