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	TX: 15.01.08 - Call You and Yours on Social Care PRESENTERS: PETER WHITE AND CAROLYN ATKINSON

	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 Today's Call You and Yours is about the provision of social care, right across the UK. And there'll be some important and influential people listening. BROWN I welcome the fact that so many people are contributing through the work of the programme and from your listeners I think we will hear information that will influence what we do because we've got to take into account not just the situation as it is at the moment but what people think is going to happen in a few years time and therefore we've got to have a system that is more personal and responsive. WHITE And you've already been very responsive, we're up to our ears in e-mails and phone calls, if you're having trouble getting through please do keep trying. The phone number is coming up. This is a flavour of what some of you who did get through have called about already this morning. VOX POPS OF CALLS My name is John. I live in Spalding in Lincolnshire. My wife was diagnosed with ovarian cancer about 15 months ago and had to undergo several operations. To care for her I had to give up my part-time job as a taxi driver, which netted me about £5,000 a year. So I applied for carers allowance but I was not allowed to have it because they means test your benefits and they count state pension as a benefit, which I think is outrageous. I'm Don Grove and I live in North Yorkshire. My mother's 94 and living in rented accommodation. She sold her house in London and has money in the bank which pays for her rent. But she's getting to the stage now where she really perhaps needs some help - home help - and if she pays out of her money that's in the bank for the home help she'll not be able to pay her rent and if she pays her rent she can't get home help and she can't get assistance with the home help from the government. How is this so because it doesn't seem very fair to me? My name is Sandy from Buckinghamshire, I care for both my parents - elderly parents - who have dementia and also physical problems too. I've given up work to care for them. And what I want to say really is that I have an enormous amount of frustration and I share that with the professionals that I meet because they feel that the system doesn't allow them to provide the care that is needed for me and for my parents. And because I don't feel supported well and that's not just practically but emotionally and financially, then it's a very, very lonely and difficult place to be. ATKINSON Also today we'll be hearing from the comedienne Liz Carr on the indignities of means testing for social care. CARR She continued with questions such as: Do you go to the toilet two times, three times, four times or more each day? Are you suicidal? - and - Do you have any skeletal deformities? I wanted to be sarcastic and ask her how many times she went for a number one and two each day. I wanted to ask her if being a social worker made her depressed and suicidal. Mostly I wanted to ask her to leave. ATKINSON Well just to emphasise what we are talking about today, we're not talking about residential care homes but we will be returning to that later in the Care in the UK series. Most people experience social care in their own homes, that's help with getting in and out of bed, help with meals, shopping, washing and bathing - that type of thing. Well Imelda Redmond, chief executive of Carers UK, which has eight and a half thousand members is with is as is Dame Denise Platt, the director of the Commission for Social Care Inspection, which monitors all care services in England. And you can put your questions and comments to them and join that national debate that the Prime Minister wants. WHITE This is how you do it. There are a number of ways: by calling 08700 100 444, that should cost no more than 32 pence; you can e-mail us via our website bbc.co.uk then Radio 4 and You and Yours; or you can text the word YOU and your comment to 63399, that's unlikely to cost more than 15 pence. ATKINSON Well in the first half of the programme we'll be concentrating how the current system for funding social care in the home actually works and after 1230 we'll be hoping to switch the focus on how it could be improved. Well Dame Denise Platt is here. Many people nowadays aren't clear what social care actually means, we gave a bit of a hint earlier, how would you define social care? PLATT Well for me social care is the group of services that help people when they become ill or they experience disability or they have a learning disability or they have infirmity or they're caring for others. They're the group of services that are intended to support and help people to overcome those problems, to assist them to carry on their daily life, to be independent and that includes, for people with disabilities, help to get into work; to keep in touch with family and friends and to offer care that offers dignity, safety and independence, as I've said. But what I hear in my job, which is as chair of the Commission for Social Care Inspection, not its director, what we hear is that the policy intentions, the policy aims, are just not met by people's experience. ATKINSON And in terms of where people get the social care, we've obviously said there's residential care but when it comes to living at home there's also day care, there's services that support carers to help them care, can you just run through the types of places people go really? PLATT Yes. Well actually when people need care in their own home the people who are most likely to provide it are their family and friends. Family and friends outnumber the paid workforce of social care workers by three to one. And then they might have a home carer who comes in to help them get up in the morning. help them to prepare a meal, carry out basic daily living activities with them. The service is changing very radically and now home carers might assist people to go out to do their own shopping and help them in different sorts of ways. So rather than doing things for people it might assist people to do things together. Day care places, respite care services where people can go while their relative has a break, all those sorts of things are classed as domiciliary care services. ATKINSON Now it would seem that there's general agreement that the current system is not working and one of the reasons for that is to do with demographics, isn't it, the fact we're all getting older, we're living longer but we're not necessarily healthier and there's more demand on the system. PLATT Interestingly the service started to get under pressure before the demographics started to kick in. So we had a service that was becoming more and more fragile, home care services finding it more difficult to cope with the numbers of people who were needing help and assistance. So the demographics, the numbers of older people in the community, are putting strain on an already stressed service. ATKINSON Okay. Now Imelda Redmond, Carers UK is your organisation, social care is fully devolved, isn't it, at the moment into the four UK countries. Can you just explain how Scotland, Wales, Northern Ireland and England differ in the way that they provide social care? Let's start with England. REDMOND England - I mean you're absolutely right it is devolved so it's terrible complicated. In England we have a system where the direction of travel, the legislation, the policy comes from the Department of Health, which is central government department and then is devolved down to local authorities who interpret that and deliver the care in the way that they wish to. There's all sorts of things there - people are charged for their services and then if we go on to Wales perhaps, Wales is quite similar to the system that we have in England. Again the Assembly in Wales devolves that then down to the local authority. In Scotland again quite similar except you have different rules around charging. And Northern Ireland we have an integrated health and social care, again different rules in different places. ATKINSON And let's just talk about Scotland in a little bit more detail. We're talking that there is some free personal care there. REDMOND That's right. In Scotland a few years ago they introduced free personal care, we don't have that in England and Wales. Basically that's - when we talk about personal care that's about helping people get out of bed and feeding people, so very basic levels of care. ATKINSON So to be clear we're not talking about free social care we're talking about just an element of that social care which is the personal care? REDMOND That's right. ATKINSON And Northern Ireland, just to return to that, they have a much more joined up system don't they in health and social care? REDMOND Yeah health and social care are an integrated service, they are directed from the central legislative body there and charging is less prevalent there, though they can charge for services. ATKINSON Okay, thank you very much, stay with us if you will. WHITE Let's go to your calls. Just one point - Imelda Redmond there was talking about Scotland, if you have had experience of the Scottish system which was changed in 2002 on the personal care front, if it's made a difference to you, if it's worked, if it hasn't do call us - 08700 100 444. Anne is calling us from Matlock. Good afternoon. ANNE Hello. WHITE Yeah what was the point you wanted to make? ANNE Yeah well I've had a [indistinct word] daughter who's 26 years old and I'm going back in time to the struggles that I've had with her, not so much with her but when she was younger and I was on my own with two children I really needed to work but because putting a child with special needs with a child minder costs so much more than a normal child I couldn't actually afford to go out to work. So I did part-time jobs all her life. So that actually then reflected on the fact that they didn't get some of the luxuries that I would have got - that they would have had if I'd been able to do a full-time job. Now that she's - I've moved to Derbyshire and the support here is brilliant and she's now going into independent living. We're now at the other end of the spectrum where my mum's got Alzheimer's and I'm running around there. So - and to get carers allowance the form requires all salary slips, etc., etc., etc., well I'm self employed. WHITE Right, but in a way you're saying that actually as far as people with learning disabilities are concerned that has improved but you're now, as it were, caught at the other end of the age spectrum? ANNE It's improved but you've still got that situation where children with learning disabilities - they need more care, more stimulation so therefore I always had to make sure I was there during school holidays and in order to put her on the mini bus in the morning and pick her up off the mini bus in the evening, there's not many jobs that are well paid that would accommodate that. WHITE So right, just trying to keep the balance what was needed and actually still managing to earn some money. ANNE Yes but - so there is no extra benefit for that and therefore that she probably lost out because of her disability because I was - the earning power was taken away from me. WHITE Anne, thank you very much for your call. Jane Reynolds is calling from Barnsley, Jane, good afternoon. REYNOLDS Thank you good afternoon. My topic was care assessments. I have been refused three care assessments - requests for care assessments both for me as a carer and for the person being cared for. The first one was in February '04 when we set up house together, I'm not related to the person I care for, I'm a friend and a year later my friend was in hospital and again when she came out of hospital we were given a book of information, most of it was out of date, but I applied again for a carers - cared for assessment and didn't get one. WHITE And on what kind of basis were you refused Jane? REYNOLDS Because I didn't need anything. I'm a former nurse and so I had some fair ideas of what was required and I'd sort of set up house - we knew each other from way back when and when my friend turned poorly then we decided we'd better live together so I could look after her. She is 81. WHITE So you feel it was based on the fact that people thought well this woman can cope, she's done this before, it's her job, is that what you're ...? REYNOLDS Possibly, I mean I don't know. When I said look here I wanted to know - I wanted to be on somebody's list so that if anything happened to me they would know something about the person I was caring for. WHITE I just want to put that to Imelda Redmond, does this happen, are people do you think sometimes assessed on the basis that well they can cope perfectly well, is there an element of that in the decision making? REDMOND Unfortunately the situation that Jane has described we do hear about and actually she was absolutely right to ask for an assessment for herself and the person that she was looking after. She's incredibly responsible saying I want people to know that I'm carrying out this care in case anything happens to me and actually her local authority are wrong in turning her down for that assessment. How do they know whether she can cope unless they've carried out an assessment? WHITE Okay Jane Reynolds thanks very much for your call. ATKINSON Well assessments are a key part of accessing social care and we asked the writer and comedienne Liz Carr for her very personal thoughts on being assessed for social care. CARR I've been on the receiving end of social services support for over 20 years now. My very first social services experience was a painful five hour ordeal with a 42 page assessment form and a well meaning Antipodean social worker called Pamela. She began her interrogation with the question: What's wrong with you? I told her - Meus ronus kaputas [phon.]. She seemed satisfied with this diagnosis and noted it down happily. Little did she know - Meus ronus kaputas was the Latin term for my wheelchair's kaput. She continued with questions such as: Do you go to the toilet two times, three times, four times or more each day? Are you suicidal? - and - Do you have any skeletal deformities? In answer to the last question I just looked silently down at my arthritic-esque body before looking incredulously back at her. I wanted to be sarcastic and ask her how many times she went for a number one and two each day. I wanted to ask her if being a social worker made her depressed and suicidal. Mostly I wanted to ask her to leave. I didn't want this stranger in my house but this five foot four brunette woman had the power to make life and death decisions about me. With one tick of a box this social worker could decide that the game was over before I'd even begun to play. When it comes to social care entitlement and provision there's no point playing by the rules because the rules are always changing. Every year my social worker reassesses me to apparently make sure I'm getting all I'm entitled to. Huh, more like she's checking to see if I've died or been cured in the last 12 months so they can make some savings. They're not assessing me, they're rationing resources. One year I'm in the highest band of need, I'm a category five, I'm a red alert, the next year I'm still as disabled but this time I'm the lowest of the low, a category zero and just a flashing amber. Qualifying for social services support, never mind getting your needs met, is just a game of chance. Over the years I've learnt how to play the game. If you want to increase your odds of winning the right to go to the toilet, get dressed and have a hot meal you need to do whatever it takes. So here's my top tips for getting what you need from an assessment. Number one: Appear as disabled as possible, act as though you can do nothing for yourself, except maybe blink, ask a friend or relative to sit attentively beside you throughout the assessment and pretend to translate each blink as though they are your voice. Number two: Dress in such a way that will impress upon the social worker that you're in desperate need of social services support. For example, you could wear a hand knitted cardigan from the local charity shop, jogging bottoms - every disabled person's best friend. And don't forget a pair of huge sheepskin slippers, it's a look Trinny and Susanna like to call cap in hand chic. Finally, number three: Give your home a pre-assessment makeover, by removing everything that suggests you have a life beyond being a service user. Remove your travel guides, any photos of you looking happy and of course the handcuffs. For the finishing touch don't hoover, tip the pot pouri out of its wicker basket and litter the place with dirty cups, plates and takeaway cartons. But here's a warning: By making your home and yourself a mess in order to emphasise your need for social services support you're playing a dangerous game of assessment Russian roulette. You run the very real risk of the social worker taking one look at you and then scribbling on the form: Client unable to cope at home requires immediate residential care. ATKINSON Liz Carr who writes for the 91훑괵 disability website Ouch!, her very personal take. WHITE I'm still trying to work out what Pamela's height had to do with anything, but never mind. ATKINSON That's very important. We should say though that perhaps that we reported on You and Yours recently many social workers are unhappy with this sort of box ticking system and some have even resorted to tweaking their assessments to help people. Now Dame Denise Platt, chair of the Commission for Social Care Inspection, is still with us. Dame Denise, this indignity that Liz talks about, I mean there's humour in there but the actual reality of it a lot of people would agree with her wouldn't they? PLATT They would and a lot of people have complained to me about how disempowered they feel facing a social worker with either a laptop or a lever arch file, filling in the bits that applies to them because what it means is - an assessment is supposed to be all about you, it's supposed to be all about you, your needs, the life you lead and what you want to keep in touch with. And when you sit there with a laptop and a lever arch file the assessment is all about the organisation, it's no longer about you. And I think what we hear people describe is that people have become a list of tasks. The service has lost who the individual is. And if we're talking about personal care and individual budgets, which are the future of social care services, you can't have those sorts of services unless you know who the person is. And our current system has lost track of that. ATKINSON And how difficult is it at the moment in this country to actually become eligible for social care? PLATT Well this year councils are telling us around 73% of councils are telling us that they're only able to offer social care services to people whose life is threatened or who have significant health problems or that they will have those problems if they don't get help or there's little or no choice or control over vital aspects of the person's life, where there's serious abuse or neglect and where there's a real inability of that person just to carry out day-to-day functions. So you're talking about people in extreme situations. ATKINSON And you're hinting there at this banding system that exists where people are categorised into one of four levels of need. PLATT That's right, they're categorised - at the moment there's a national framework which councils use to work out the basis on which they will offer services and that's critical, substantial, moderate or low. And what I have just described to you is the critical category. Substantial isn't much different, it goes down in little grades about partial choice but we're still in the same territory. ATKINSON But what you're saying is that there are a huge number of people now who are falling below the bar, if you like, they're categorised as low and moderate and they don't qualify for care. PLATT Those people are being turned away and those people, of course, are people who might have qualified for care some years ago, where professionals thought they did need help but in our current system they're not qualifying for help. ATKINSON Okay Dame Denise Platt thank you very much. WHITE And let's hear more about how the service impinges on people, real people, Nicholas Selley is calling us from Somerset, Nicholas good afternoon. SELLEY Good afternoon. WHITE Yeah tell us about your own experience. SELLEY Well I think that the last comment was very pertinent. I - just a little background. About six years ago, just over six years ago I came down from London to Somerset to look after my 94-year-old then mother. The alternative was to put her into a home. The - I think the experience has been amazing and I haven't regretted it for one moment but I do feel that the social services, in some respects, are absolutely excellent but in others are unbelievably awful and incredibly sort of just committed to their system, they don't really look at what's needed. For example, I was listening to the Archers not so very long ago and there was thing about dementia and getting the local pscyhia - the community psychiatric nurse to come and advise as to sort of techniques and things. Well my mother's now a hundred and she has got memory problems, I don't really know whether she's got dementia, I'm sure she hasn't got Alzheimer's but she can't remember anything and sometimes she gets totally confused. Now I've had absolutely no training for this, I'm a hundred percent involved in her welfare, every hour of the day and night, I get three two hour sessions of sitting - as they call it - and I can't really do very much during that. And I'm not complaining that at all, I don't claim a carers allowance, which I believe I'm entitled to, but I just feel that carers are human beings, we do also have brains ... WHITE Just in a word Nicholas what - and literally in a sentence - what could they give you that you're not being given? SELLEY Well she was assessed fully when I started and they agreed to help her with four days of baths. Well I would have thought for a hundred year old lady it's fairly important to have a bath. Four and a half years into - after this they reassessed her when she was four and a half years older said no she didn't need a bath any longer and so that help was withdrawn. WHITE So all that kind of inconsistency. SELLEY Yeah. WHITE Nicholas, thank you very much. Rachel Denton is on the line from Lincolnshire, Rachel what was the point you wanted to make to us? DENTON I'm a paid carer for a young woman with profound disabilities, she's in independent living and requires 24 hour care. And we do everything for her, we give her medical needs and personal care, devise programmes of activities, everything. And for that we're paid just above the minimum wage and we've been told this year that - well from April '07 - that we're not going to get a pay rise this year because the local authorities have reduced the fees they pay to the company that hires us. WHITE So you're saying you've got a very complex job which is demanding and who's going to go into that job if the money's not there? DENTON Well we're under staffed, we can't recruit because nobody will come on board for that sort of a wage and I mean I've been with Susan for four years now and of course you build up a very strong relationship and so I stay out of loyalty to her and to her family. But I wouldn't walk into the job now, not at the rate of pay we're paid and we're not getting a pay rise this year. WHITE Rachel, we may well come back to that with our guests and the whole issue of whether people are attracted to the service. Let me take one more call which is Nicky Lewis from Hertfordshire, Nicky good afternoon. LEWIS Good afternoon. WHITE Yeah go ahead. LEWIS Right I'd like to talk about my brother Andrew who had Down's Syndrome and dementia. He was cared for in Ayrshire in Scotland and for the last year of his life - and he was cared for all his life - but particularly for the last year of his life he had round the clock care in his own home which was completely funded and we were able to sustain the quality of his life right up until the last moment. I would like to sort of applaud the previous caller who was absolutely correct - this is a job of complete and utter dedication. We were very lucky in that we fought and we got a team who were consistent and who stayed with Andrew, took an undertaking to stay with Andrew until his death. This I think possibly would not have happened had it not been for family involvement. We did have to fight very hard and we did fight very strong with the social department originally until they actually found out that we really meant business and we were determined to get the care that we needed for Andrew. WHITE But you're saying when it is good, when you get it, it works. LEWIS It was unbelievable and it actually - it allowed him to have a wonderful quality of life right up until his last moment. So much so that even when he was taken into hospital for the last three weeks of his life we were still able to provide that round the clock care completely by his own team in addition to the nursing staff. WHITE And we should say - I guess your point about that is people you know, familiarity, not loads of changes that is very important. LEWIS It is imperative to have a well known regular team because by doing that you can sustain the quality of life, you can actually acknowledge, you are absolutely aware of the person, you can recognise the changes as they happen, you can take immediate action when those changes happen. The other thing I think that was very important and is really important that I mention is that one of the things we got form the social work department was immediately available flexible funding to meet those changing needs because particularly in a case of dementia and in dementia with Down's Syndrome changes happen very rapidly and you cannot then go back to the system and wait three, four weeks until the social work decide to implement further funding to support those needs. So the really important thing we got was we had in place an agreement for flexible funding with the social work department and they were brilliant. WHITE Nicky, thank you very much indeed for your call, it's good to know that it works sometimes. ATKINSON We're getting lots of e-mails. Tina Hogg has e-mailed to say: Thank you for flagging up this issue. I find each form I have to complete extremely traumatic and always end up in tears. Anyone thinking that we're all scroungers has never considered that we would never subject ourselves to such humiliation unless absolutely necessary. The time is 1230, you're listening to Call You and Yours on 91훑괵 Radio 4 with Peter White and Carolyn Atkinson. In a moment we'll be discussing some ways of improving the social care system and we'll be joined by the director of the Joseph Rowntree Foundation Julia Unwin. And of course we'll be taking more of your calls - 08700 100 444 is the number to call, the phones are very busy but people are getting through so please do keep on trying. Well we're discussing social care here on Call You and Yours today. So far we've heard some of your experiences about social care and we've identified some of the key issues which you're concerned about. Now let's start to try to look at some of the possible solutions, including how we might replace the current means tested system, which many people think is unfair and unclear and discuss who should pay for the care and how we should pay for the care under a new system. Well joining us to discuss some of this is Julia Unwin, the director of the Joseph Rowntree Foundation. The foundation's been looking at ways of funding this growing demand for long term care that we're experiencing in this country at the moment as the population ages. Julia, very briefly first of all, what sort of ideas are we talking about here, what are the options that are up for discussion? UNWIN Well there are a number of very different ideas. There's a very big idea which is the one the government are talking about at the moment, it's the idea that was put by Joseph Rowntree Foundation and the King's Fund and a group of other organisations which is called co-payment where we would have some certainty about how much the government would pay and all our research suggests that people are happy to pay a part of the cost of care as long as they know what they're entitled to. ATKINSON So it's something that's a little bit clear than the current sort of gamble that you take. UNWIN Well everything we know about the current system is, as your callers have said, it's unclear, it's difficult to understand and people think it penalises anyone who's got any savings. What we're promoting is a system where the government pays a fixed amount, you know what you can expect and you can make plans yourself. ATKINSON Well we're going to explore some of those areas in just a moment. Now during our Care in the UK series we've been speaking to four generations of the same family who either give or receive care. So what do they think about who should pay for future care and what sort of system we should have? I've been speaking to 87-year-old May, who's registered blind and she receives informal care from her son to Julia, who's 35 and mother of 11-year-old daughter Charlotte who has learning difficulties, autism and epilepsy and to 61-year-old Dorothy who has MS, she receives some social services care and she's married to David who's also her carer. DAVID We've not done too bad but we find to get things it's been a lot harder. When we have needed things and we've been desperate for them we've had to really fight for it and I've had to at times go in and say look we just cannot manage, you've got to help us. Eventually in most cases we have got that help but it's been very difficult. When Dorothy's legs were going and we were struggling to get her upstairs then we obviously wanted a stair lift in. We found one that was for sale and we went and bought it to get it in so that we could get her upstairs. MAY I don't think my son could carry on as I get older, I mean I don't know how I'm going to be as I get older, no one knows that do they. ATKINSON And so what would you like social services to do if that situation arises? MAY Well they would have to give more help wouldn't they. ATKINSON And would that be something you'd be prepared to pay for? MAY Yes, especially if I was left on my own, more so. ATKINSON At what point would you think it - you know there's a cut off point about say a few hundreds pounds a month or a few hundred pounds a week that's acceptable for you as an individual to pay compared with the social services? MAY Well I should say every week if possible. DOROTHY I think make it fairer as regards payment, I think everyone should have to pay a little bit but I do feel taxes should be increased to help the situation. JULIA I think one of the misconceptions is that if you have a disabled child or you become disabled yourself you get sort of a pack through the door that says right you're entitled to this, that and the other, you know you can have blah, blah, blah and it's not like that, everything that we've ever got has been kind of stumbled upon. You know give people sort of the same starting point. In terms of payment I don't know, it's difficult because in some way it seems fair to say that people with a bit more money should perhaps pay a bit more for the child's disability of whatever but then none of us have asked for this situation and some people have worked harder all their lives and got jobs due to harder work and therefore is it fair to penalise them for doing that. I'm quite undecided on that actually. So it's a minefield. ATKINSON A minefield. Well listening to that is Julia Unwin, director of the Joseph Rowntree Foundation, this is the tricky bit isn't it, we know what the problems are but finding the solution is an entirely different matter. We talked just before we heard that interview with the family about ways of changing the system, do you think it's fair to say that people are now beginning to think that a personal contribution, if you know what it's going to be, is the way forward as opposed to still demanding free social care? UNWIN I think people know that free social care is probably not available because of the size of the problem that we face because for very good reasons we are all living longer, people have a higher need for care in the long term. And so I think the people we've talked to - and this is by no means conclusive but your callers suggest the same - recognise they may need to pay towards the cost of care. But what is grossly unfair is that they are taken for granted in the huge contribution that carers make themselves, they don't have a clear understanding of what they might expect and there's no certainty ahead of them and that uncertainty seems to me to be the most worrying thing about the current system. ATKINSON So if you were to have a new system that had a defined amount that the government contribute and then you know as a person what you contribute how do you come to the equation there - is it 50/50, 40/60 - how do we get to the nitty gritty of it? UNWIN Well Derek Wanless, who wrote the report that the King's Fund commissioned, asked for 80/20 - 80% from government, 20% from individuals - and that's the one that through the Caring Choices Coalition, which Imelda was a part of last year, we asked members of the public, older people and their carers, what they thought of that. There's a long way to go before we make that real. And there are a number of things that we think the government could do straightaway before they make that very big change which I believe they'll have to make, the current system isn't fit for purpose and it can't carry on. Before they get there they could do things to enable people to use the equity that's in their home - 70% of us are now home owners - people could use some of that equity if they were helped by government to pay for some of the costs of care. They could so something more about the carers allowance which is derisory and takes people for granted. There are a number of things which could be done to help improve the system but in the end we need a deep review and the system's change which we think needs to based on a clear understanding what does the individual pay, what does the state pay. ATKINSON If the state was to decide that it was going to make a defined contribution and that example you gave - 80/20% - I mean is that an affordable equation that the government could come up with if it had the decision that it was going to do that, if it was behind the idea? UNWIN Whatever happens it's going to be very expensive, there's no cheap way out of the fact that demography is changing - people are living for longer, people with disabilities are living for longer - and that's a very positive thing. There's no cheap way out of it. We believe that the costs are affordable if the government decides that it needs to do it. ATKINSON But that still leaves the person themselves with a fairly big bill on their hands, particularly if their care needs are 24 hours for example. UNWIN It does and many people won't be able to pay for them but the people who can pay those costs are saying to us, saying to your programme, that they are prepared to make some sort of contribution. We need to find ways of helping people to do it - either through insurance schemes, through the equity release that I talked about - different ways of doing it. ATKINSON An insurance scheme, I mean that has been tried in other countries and it's not necessarily with great success. UNWIN So far it hasn't been but I think we need to explore all avenues of accessing other forms of funding so we can insure against our long term frailty. ATKINSON Okay Julia, thank you very much indeed for the moment. WHITE And we've been asking you this morning in our trailers to think about this whole thing, both the financial aspect of it - how we deal with it - and its social and moral aspect as well. Our guests are here, so I'll bring them in when it seems appropriate. But let's go to Morgan who's calling us from near Glastonbury. Morgan, good afternoon. MORGAN Hello Peter. WHITE What's your view about this? MORGAN My view - and I'm listening to the last caller and I'm hearing that we need a deep review and system change, that there is no cheap way out of this. My point of view is that we must not look at the care for the elderly in isolation from the rest of what's going on in society. WHITE Such as? MORGAN And we talk about care in the community and I think the word we should be looking at here is community. Old people shouldn't be looking to their last years being spent in - well I mean I hate to use the word death camp but that's how I think of old people's homes, it's a place you go to die. WHITE But 90% don't Morgan, I mean the fact of the matter is we are much better at keeping people in their own homes than we were say in the '70s where it started to be thought that the only way was old people's homes. MORGAN Yes, my mother is 90 and she lives alone in her own home and manages very well. And yet her - she is isolated and loneliness and isolation itself creates problems. What I want to say is that we need to look at the whole picture of the society and everything's that's happening in the way of sustainability - social sustainability and economic sustainability. If we look at the whole picture that means sort of ecological thinking that the needs of young people and many, many single parents these days who are looking for single accommodation who also don't want to be isolated. So I think we should be spending a lot more time and energy and money looking at things like co-housing, things like eco-community where old people, elderly people, and people getting into their 60s - I mean I'm 66 - and I know many people, many women, around my age who have money to invest in their future, they do want to invest in something like a co-housing situation. WHITE So in a way you're saying we should support each other better and maybe these ideas such as communities but not ghettos. MORGAN Not ghettos for the elderly. And of course as we get really old we need peace and quiet. So these - any new social developments need to take that into account, there need to be quiet little corners for people who are older and don't want to listen to too much racket. But not in isolated ghettos for the elderly no. And I think we should be looking at how the whole question of sustainability - the change in the demographic, the way that there are far more people living alone of all ages. WHITE Morgan, thanks very much for your call. I want to go the Heather Goodair in Edinburgh, Heather good afternoon. GOODAIR Good afternoon Peter. WHITE Yeah let's have your views. GOODAIR Well I really would like to sing the praises of our local community rehabilitation service. My husband had a stroke on the 24th November, he was discharged from hospital a month later. There was some talk of him going to a rehab hospital but in fact he was discharged home. And the liaison between the hospital and the home was absolutely fantastic and everything was done to make it possible for me to care for him, neither of us are spring chickens, I mean he's nearly 79 and I'm 76. But the rehab team has been absolutely brilliant, this is in Edinburgh I hasten to add. WHITE And I wondered because it's Edinburgh how much you think it has to do with what we were talking about - the fact that Scotland's system has recognised personal care as something that is available free to people. GOODAIR Sure, sure. Well I don't know how long the personal care would be needed but this is a five week package which is not means tested and we have physiotherapists, we have occupational therapists, we have care workers who come in twice a day, we have somebody to help with getting up and dressing and washing and so on and then somebody later on who comes in and helps with rehabilitation - doing exercises and so on. I mean he - my husband was more or less made blind by the stroke, very, very poor sight but he can now walk around the flat without any problem on his own. A month ago he couldn't walk anywhere without assistance. And the progress has been fantastic but also the joined up thinking has been fantastic - the way that the workers have liased with other services - with the RNIB, with the - all the various sort of people who provide things like Blue Badges and so on. And in fact one of the - one of the workers - the OT person - helped me fill in one of these horrendous forms which was such a relief, because when you come out of hospital after a shock like that there's so much paperwork. WHITE Heather, thank you very much. I want to go to Primmy McGilvrae in Aberdeenshire, sorry to rush you Heather but there's a lot of people trying to get on. Primmy what was the point you wanted to make? MCGILVRAE I just wanted to tell you about my experience with my mother. My mum was registered blind and was severely disabled but wanted to carry on living in her own home and she had to go through assessment after assessment after assessment and I wasn't always there because I work full-time, I wasn't always there when the assessment was taking place. And my mum would get asked all these questions about how far can you walk, for example can you walk unaided from here to there, and my mum being a very proud lady would say och no, no I can manage fine, I can do that on my own. Do you need help with showering? Och not at all, I'm absolutely fine. And it just always strikes me that if we're going to improve these services we must look at the individual person and say well she's saying that, I'm not just going to tick this box and go away and believe everything that I'm being told here, I'm going to find out more about it. I just think that perhaps a bit more training in how people carry out these assessments might be a valuable thing. WHITE Right, training is an important point. Denise Platt, this in a way is the reverse side of Liz Carr's very humorous account, that's someone who's playing the system, most people don't play the system do they? PLATT Most people don't play the system and what has been described in the last three calls is the really transformational effect that good social care can have where there is a coordination and there are well motivated carers who are given the right support. And in fact the community rehabilitation scheme and housing with care schemes that have been described are available in this country, not just in Scotland, and we have seen a real improvement in people's experiences as a result. But the availability of those services is still very patchy and still very local. WHITE Let's go to Val Murphy in Wrexham, Val good afternoon. MURPHY Good afternoon. WHITE Yes do make your point to us. MURPHY Yes. My mother had a stroke 12 years ago and my father has been the sole carer, he's now 76, she's now 78. She has complete lack of mobility. We've been going through the system for 12 years and we're at the stage now where mum can't stay at home and we're looking at residential care. What seems really difficult is to understand what's residential care criteria and what's nursing care criteria. We're in Wales and the system seems incredibly complicated. We have been through umpteen professionals to the extent that dad, who's quite able mentally although deteriorating rapidly physically, is just at saturation point with the system and what information is needed, what's not needed, what's relevant, whether it's a district nurse's comment, whether it's occupational health, whose opinion counts and I am just amazed as to the layers of information that's needed. So to improve what I would say is have a clear criteria, a clear eligibility criteria financially, and then a much more joined up approach between the various departments. WHITE And when you say financially what of the various systems that you've heard described what would you regard as fair and likely to work? MURPHY Well I think it's likely and realistic that it's not going to be paid for by the state. I think that it's likely that people would have contributions to make and I think that should be assessed as what's affordable, fair and reasonable and there should be some means assessment. I think that's kind ... WHITE So you don't object on principle to means assessment? MURPHY On principle no, I don't, but I do inevitably feel as though well perhaps those that are more prudent and save are the ones that are going to have to use their savings to pay for their care. What I think is really not working at the moment is the way the criteria is laid down, what is the criteria and it's that that I just find impossible to find out and impossible to find out what information is relevant and not relevant. And then finding a home that's prepared to accept the rate that social services pay. WHITE Right, well we may - we will come on in subsequent programmes to the issue of residential care but Val Murphy thank you very much for making those points. ATKINSON Well the e-mails keep on coming. Pat Nichols has e-mailed to say: I've recently gone through the whole process of applying for care in the home with my mother-in-law for whom I'm the carer, this was done with Greenwich Council who were superb throughout, they made what could have been a traumatic and puzzling process very easy to understand and completely non-threatening. And similar thoughts from Fran Law, who's e-mailed to say: I'm always hearing how terrible social care in the home is this is not my experience. My parents have received care in the home for four years, dad died last September at home with the most wonderful care when he was 94, mum is now alone at 91 and has the most super care and when we have needed more we've had an assessment, it's been carried out and the care has been increased. I'm tired of people knocking social services, the care is improving every year. On the issue of free personal care in Scotland Jo Graham has said: Free personal care does not exist in Scotland. My sister who died last year had to pay almost £200 a week for personal care, this amounted to almost all the income from her work pension, she did receive some free personal care but as I say she had to pay a private care company for the personal care, the Scottish government claims are not true. And Alistair Lawrence says: Everyone goes on about how great it is if you get some free personal care in Scotland, this is true but if you're in a home, as my 90-year-old mother, with Alzheimer's was, you don't get the attendance allowance, so heads you win, tails I lose, he said. A lot of people are flagging up the lack of support for unpaid carers and the job that they do. Imelda Redmond from Carers UK is this an area that you think needs more work because that's what a lot of people have been saying haven't they? REDMOND Absolutely. We actually - we began to talk about solutions with Julia a minute ago, we don't have a solution to our long term social care system unless we put families right at the centre of it. The unpaid carers carry out over 80% of the care in this country. And families are paying for care currently but they're often struggling in the way that we've heard from a few people, finding their way round an incredibly complicated system. ATKINSON And many people don't know that they are allowed to have a carers assessment themselves, that's an obligation that they don't realise. REDMOND They don't realise. I mean they don't realise they're carers which is absolutely fair enough because you are a daughter, a partner, a spouse, you know you don't think of yourself as a carer. But understanding that term is quite useful because that's the sort of gateway to helping you to get some help for yourself and also to see whether there's any welfare benefits that can also help you. ATKINSON And often people look capable and so everyone sort of leaves them to it, they'll be fine, they've always coped up till now. REDMOND That's right and Denise talked earlier about the eligibility criteria and people if they're not at that critical stage then their needs don't go away, they're picked up by family members. ATKINSON Julia Unwin from Joseph Rowntree another thing that people have picked up on is the carers allowance and the whole benefit system but the carers allowance in particular. UNWIN Well I think the carers allowance is a real problem. As Imelda said we couldn't support the older people at all if it wasn't for the amount of care being given by families. And we do need to acknowledge that support and finance it in a way that is suitable for the dignity of those carers and I think the figures just don't add up. To get under £50 a week for non-pensioners who are spending 35 hours caring and earning less than £95 a week is taking them for granted, it's simply not enough. To dock that money when people become a pensionable age seems to me to be a real problem in terms of understanding and recognising the work that carers do. ATKINSON And Dame Denise Platt, the quality of care and caring is a big problem isn't it, I mean we've had some messages on the message board. One person talked about somebody getting 18 different carers in one week. PLATT Yes I call that the M26 model of care from a woman who said it felt as if she was getting her care in the middle of the M26. What we've heard is that for many people when they get inside the system the quality of their care is improving - your e-mails showed that - if people fall outside the system then the quality of their care is very poor. And for some people the way that home care is organised in 15 minute slots is just completely unacceptable, it is no dignity and it is not safe. And that has to improve. ATKINSON And how do we improve the role of paid carers in all of us because recruitment is such an issue? PLATT Paid carers find the system that I've described as unhappy as do the people on the receiving end of their care. We have to give them the time and the expertise and the skills to get to know the person they're caring for and to do things in partnership, not for or instead of. ATKINSON Just finally before we go, what would you take away from today's programme about the key things you need to see action on? PLATT I want to see a new funding system and a new settlement between individual, family and state as soon as all parties can agree it. ATKINSON Imelda Redmond. REDMOND I want to see all that Denise wants to see and I want to make sure that family carers are put at the centre of that new development. ATKINSON And Julia, do you think we're heading towards the beginning of a change, what would you like to see? UNWIN I think there's no choice but to have this change, we cannot carry on as we are now. And that's why I'd certainly back both what Imelda and Denise have asked for. ATKINSON Okay, Julia, Imelda and Dame Denise Platt thank you very much indeed. WHITE And of course our social care series continues right the way through until the 31st January. Back to the Transcripts homepage Back to the You and Yours homepage The 91훑괵 is not responsible for external websites

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