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 | You and Yours - Transcript BBC Radio 4 |
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| TX: 03.08.06 - Continuing Care PRESENTER: SHEILA MCCLENNON |
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| 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 BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY. MCCLENNON Imagine if after a lifetime of work you end up in old age owning only your clothes and a few photographs and possessions that will fit into the room at the nursing home. Well that's what happened to the mother of You and Yours listening Paul Philipson. She has dementia and like many people in England and Wales she's found herself caught in the black hole between health - or what is referred to as continuing care, which is free and social care such as washing and dressing, which is not. The government is currently reviewing the way people's needs are assessed. It's in response to many complaints that the present system is unfair and people with dementia who should have qualified for free healthcare have had to fund it themselves, in some cases they've had to sell their homes to cover the costs. Our disability reporter Carolyn Atkinson has been finding out more. ATKINSON Well Paul Philipson's mother Katherine is 79 years old and last November Paul told us about his two year battle to get the care he thinks that his mother needs. Now she was turned down for free healthcare because there's no need for doctors or nurses doing things like injections or dressing wounds and instead she only gets social care - help with bathing, dressing, feeding - and that is all means tested. Now when we spoke to Paul he was about to take his complaint to the independent NHS watchdog - the Healthcare Commission - and this is how he got on. PHILIPSON Eight months on and I've had the response now from the Healthcare Commission and they completely agreed with my complaint - supported my complaint. They noted that the authority hadn't followed the procedures that they should have for a multidisciplinary assessment, including all of the people involved in the care of my mum, including social services, they just had one person do the assessment. And they asked that the PCT undertake a full multidisciplinary assessment and that they review their position against the government guidelines. ATKINSON So do you consider that a result as it were? PHILIPSON That's a very big result. The Healthcare Commission have come up completely with what I wanted them to do, the problem is they have no authority to make it happen. MCCLENNON So Paul got a result but he doesn't sound very hopeful, is he right, Carolyn, to suggest that the Healthcare Commission has no teeth? ATKINSON Well Marcia Fry is from the Healthcare Commission and she does agree but only up to a point. FRY Well clearly it's very frustrating when primary care trusts don't do what we're asking. This case is obviously frustrating for both Mr Philipson and for the Healthcare Commission. But generally speaking we find that the trusts and the primary care trusts do act on what we say, it's their responsibility in the first place to act on these recommendations but we follow up and we chase up and we repeatedly chase up until the action is taken. ATKINSON The fact that you have to do all of that suggests that they do need a bit of encouragement, shall we say, to actually do what you're saying. FRY In some cases that's true and in those cases we can also take action through the strategic health authority who are responsible for the performance of their primary care trusts and ultimately this can affect the rating that we as a healthcare commission give to primary care trusts and other trusts. If they don't follow our recommendations, if they don't do their complaints handling properly that can affect their ratings. ATKINSON Internally you've got a lot of staff working on an awful lot of cases, there's an awful lot of man hour and cost involved here and surely the least that should happen is that somebody jumps when you say jump? FRY What I would say is that through our local staff who are able to go and talk to chief executives and to impress on them the seriousness of this we have more teeth than others. MCCLENNON Marcia Fry from the Healthcare Commission. I know whenever we cover this subject we get a huge response from angry people who've had to sell their homes to meet the costs and they don't understand why they don't get free care. Now the system in Scotland is different, most care there is free, why are changes now being made in England and Wales to the way assessments are done? ATKINSON Well basically there are a lot of very angry relatives out there. The Healthcare Commission, itself, has dealt with 235 complaints in the past two years. The top body - the NHS Ombudsman - has dealt with more than a thousand cases in the past year alone. Now in January we reported that new guidelines on how to assess people for care were on the way, well they're now out and they're up for public consultation over the next seven weeks. Now the grand title is the National Service Framework for NHS Continuing Healthcare, I've got a copy here. But a key change in it, flicking through, is that they're going to abolish the 28 different sets of criteria that are currently used across the country and they're going to hone it down to one set of national criteria. MCCLENNON So will that improve the situation? ATKINSON Well I've been discussing this with Melanie Henwood, she's an independent health consultant, she's an advisor to the Commons Health Select Committee - they've been pushing for an improvement in continuing care. Also to Andrew Chidgey from the Alzheimer's Society and firstly to Francine Lawrence, whose mother has dementia and she is considering mortgaging her house to pay the care bill for her and Francine says battling for care is a steep learning curve. LAWRENCE I think it's a bit like taking a university degree, I suddenly found myself having to study reports, understand words, learn a new language and it wasn't until I learnt all this that I started making a tiny bit of progress through the system and apart from the bureaucratic mess ups I think that people don't always take into consideration the emotional distress that this causes all of us - the family. ATKINSON And so what are her needs and what is she getting? LAWRENCE Okay, well you know basically mum has deteriorated since her diagnosis of vascular dementia in 2003. Her memory is completely gone, she forgets when to eat, she forgets what time of day it is, she can put her coat on at three in the morning and decide to go to the shop and then wonder why she can't. She can make sandwiches out of cat food, she puts plastic bowls on the gas unless she's cared for. So that's why we have to have 24 hour care, live in carers, for her. She's run out of the house with a knife, she's thought that people are trying to kill her, she imagines that people are living in her spare room and stealing strange objects like towels from her. And so that's why it's terribly important that she has consistent and good care all the time, to stop herself hurting herself and basically keeping her calm. ATKINSON And at the moment you've been told she can get social care which is means tested and you have to pay for and she can't get continuing care. LAWRENCE Yes, that's right. I rang social services and asked for help and immediately they asked how much money mum had in the bank and how much everything was worth and we had to submit bank statements and go through a means testing procedure, which I should say - by the way - I think is extremely shocking. If either of us in this room fell under a bus tomorrow or we had cancer or we had a heart attack or a mental illness nobody would say to us - excuse me can I see how much you've got in your bank account before we treat you. And this is the situation that I came up against until I found out by chance about continuing care. ATKINSON And just to be clear - continuing care is free on the NHS, it's when someone needs nursing care, not just social care. LAWRENCE That's right there's this woolly definition of social care and healthcare, my mother does need psychological healthcare and she also, by the way, takes an antipsychotic drug now, and therefore I believed - and looking at the NHS criteria - believed that she was eligible for continuing care. And so then the assessments began. ATKINSON Melanie, you've been advising the Health Select Committee on all of this and they accept something is not right with the current system, so what are the proposals, how is it going to change? HENWOOD I think everybody recognises that the current system - and we've heard it described graphically in Francine's experiences - the current situation isn't right, it's complex, it's confused and the ordinary person simply doesn't understand it, it doesn't the way through and how the assessments are undertaken. And fundamentally can't distinguish between health and social care, in the way that the policy tries to. What the framework is trying to do is to get a simpler, fairer, a more coherent system but what it's not doing is fundamentally changing that separation of health and social care. So we're still going to have that, even under the new framework. ATKINSON But what is changing is that at the moment each strategic health authority can make up its own rules, it has its own eligibility criteria, now that is going to change isn't it, how will that change? HENWOOD That's right, at the moment we've got what's notoriously referred to as the postcode lottery, whereby the 28 SHAs can all use their own criteria. The national framework, for the first time, attempts to have a system that will operate consistently, coherently, across the country - one single set of eligibility criteria. And those will be determined by looking at the complexity, the nature, the intensity and the unpredictability of someone's condition and then working out whether or not there is a primary need for healthcare. ATKINSON But the argument goes that this all looks great on paper, the SHAs will have to do what they're told to do but in practice there'll still be this division between the health needs of somebody and their social needs? HENWOOD That's absolutely right, that still does remain. And it won't be the situation, it won't be the case that everybody who needs long term care will get continuing care. What will be true, I think, in future is that more people will be - will qualify under the new criteria than is the situation at the moment. How many more we don't know at this stage. But there will still be people who fall foul of this because their needs are not judged to be health needs. ATKINSON Now also here is Andrew Chidgey from the Alzheimer's Society. Andrew, are you convinced by this new document, that the government would argue that many more people are going to qualify for continuing care? CHIDGEY No, I'm not convinced, it feels a bit like moving round the deckchairs on the Titanic, to be frank, because although we can see some positive changes in the new framework, it's very good, as Melanie says, that there's going to be a national framework across England at least and that it's going to mean more transparency - so it's going to be easier to compare cases, like with like, across the country to see whether people in one part are getting access and people in others aren't. But at the same time it still really doesn't deal with this central issue which is the discrimination against people on the basis of who they get their care from. If you get your care from what's traditionally been the NHS, doctors and nurses, it gets paid for, if you get it from social services you don't get it paid for. Now the numbers that I've seen that are part of the consultation the government's put out say that there's about £110 million going to be put towards funding this new framework. Now continuing care is very expensive, if you have someone with complex needs it can be £35,000 upwards, now to me that works out at about another 3,000 people maybe in England and it's difficult to take just the average but currently there are 26,000 people getting continuing care in England, so 3,000 doesn't feel like a big change to me. ATKINSON It's a 10% rise really isn't it. LAWRENCE We've been turned down twice now ... ATKINSON For continuing care. LAWRENCE For continuing care. And the first assessment I felt was done in an extremely sloppy way actually, we had the community psychiatric nurse's reports, we had social services reports and the PCTs reports and they really weren't consistent. ATKINSON Can you give some examples? LAWRENCE Yes. For instance, it's been put right now but at the time I believed that one of the reasons we were turned down was that one of the boxes says does the patient have hallucinations, well my mother thinks she's being bombed very often, she relives the war, which is quite common but it is quite distressing. Does she have sleep problems? Well yes she gets up at three in the morning and then she gets up again at four - she has sleep problems. Mobility? Yes she has to walk with a stick and a wheelchair, she has severe arthritis and has to take very, very strong painkillers. That box wasn't ticked. So I had to send it all back to be done again. It's all paperwork for bureaucrats. And for people like us who have parents or partners or relatives with dementia, I think you're absolutely right, this new consultation document, which I had a glance at, it doesn't - it might make it a little bit clearer for the local authorities but it doesn't make it any clearer for us, all we see is that there is something called continuing care or there is social services and that's nothing and I can't see how this consultation document if it comes into being is going to help people like us, I think we need to have a much better policy. There are 700,000 people with dementia in this country, they can't live on their own, they need help and they should get it - they are ill, they're mentally ill. HENWOOD I think however good the new framework is and however much it clarifies the situation you've still got the issue about how is this going to be interpreted and applied on the ground and the sort of situation that Francine's described with people not doing assessment properly is obviously a great worry. So this has got to be properly supported, there's got to be adequate training so that there is consistency in application. But we're still into the whole thing about this as defending a boundary between health and social care and the minister has said, you know, that we can't change the situation, we've had this separation since 1948 of health and social care and that no government, he has said, could afford to pay for all social care. I think that's a debate to be had and I think the question to ask him is well what does it actually cost to continue to police this boundary and to keep people out and to keep on doing those assessments to determine who qualifies and who doesn't. ATKINSON Because there is an anomaly here isn't there, we've got an NHS that is struggling to finance itself and we've got here, arguably, a new framework which is going to fund at least maybe 3,000 more people which is going to cost more money, so how do those two things tally - why are the government doing this? HENWOOD They're doing it because they've accepted the moral argument, I think, that more people need to qualify, need to fit the eligibility criteria and should be getting continuing care. There's a lot of political fallout - we've heard about the cases that have been to the ombudsman, cases going to judicial review, they don't want that to continue. So this is an attempt to deal with that, to find a way out. You can't get an ideal solution to something that's fatally flawed, fundamentally flawed, with the separation of health and social care. Any solution is a compromise and that will have its own problems. Yes, there'll be more demands on the budgets of the Health Service, so that's got to be resourced and as you say we're already fully aware of the problems with deficits in the NHS. ATKINSON And are the PCTs and the strategic health authorities finding themselves caught up in a lot of legal cases? HENWOOD Undoubtedly, the fact that there was a national review that looked at doing restitution for cases that had been wrongly denied care, they all had to go back and review all of those cases that came to them, a huge amount of work. Relatively few people actually benefited from that but we don't know how many extra people out there had actually been denied free NHS continuing care. ATKINSON We've actually covered this a lot on You and Yours, in fact we only got an e-mail yesterday from a gentleman who heard about it on You and Yours and has just received the money back for the house that he was told to sell. Unfortunately his mother has now died. HENWOOD And of course what it doesn't do is give you back your family home, once the home is sold that's it, it's the money that you can get the recompense, you don't get that chance to have your home back and all the memories and all the emotional significance that that carries, people are still being obliged to sell a home when they shouldn't have done. ATKINSON The consultation is ongoing, there's seven more weeks, what is the Alzheimer's Society saying to the government over this consultation? CHIDGEY Well we're talking to lots of people who are affected by this issue to understand whether they think it will make a difference and we will be explaining our thoughts as well. We will be saying that it's great in the sense that there's going to be a new national framework, it's going to be easier to tell, hopefully, who's going to get access to what. But at the same time I think it's back to the point that Melanie and Francine have been making - this is a system which has got a fatal flaw at the heart of it and this policy is seeking to paper over the cracks. ATKINSON But they would argue that there really is not a bottomless pit and at some point people have to contribute to the cost. CHIDGEY I agree there isn't a bottomless pit, I think what we're asking for is to make sure that people with particular diseases and different needs aren't discriminated against and I think that debate needs to happen. ATKINSON But it is clear in this document, it says, it's not assessing you on your disease or your condition it's assessing you on what your needs are, so people with dementia arguably will not be discriminated against in the way you say they are being. CHIDGEY Yes, but that's what we've been told historically about the current system that exists for continuing care and we know very well that people have to battle to get access and they're being told, for example, oh now that you're into the later stages of Alzheimer's Disease and in the later stages someone loses all their function and mobilities often will be in bed in a foetal position unable to recognise anybody or do anything for him or herself and they say you no longer meet the continuing care criteria because your condition is stable and predictable. Now anyone who supports someone with this type of condition knows that that's a completely unacceptable response. ATKINSON And Francine you actually have experience of that at the moment because your mother has been sort of downgraded. LAWRENCE Yes, when I appealed against the first appeal we were assessed again and they actually caught her on a good day and she's now been downgraded. My argument is that she's getting consistent good care from the carers that live in with her, who treat her like their own mother and that's why she's stable. HENWOOD But you're right it's the quality of that care that's keeping her at that level and that's stopping her deterioration. And I do think that the new framework does recognise some of this and you're right that it does emphasis that this assessment has to be about need, not diagnosis or condition, and that it does make the point that in the assessment that looking at complexity, unpredictability and so on - that's got to be done with each of those aspects, they don't all have to be present. So someone who is predictable and stable could still qualify because of the nature of their condition. But all of this is about how it's going to be interpreted and implemented and I mean the sort of thing Francine, that you've talked about with your assessment experience, is just horrific. I mean looking first of all at your mother's bank account, rather than at her needs, that's what we've got to get away from. CHIDGEY People still can't understand it - people have complex long term medical conditions, they need a lot of support, is the NHS and are social services going to provide that support funded or not? HENWOOD Over the years we've moved from having more than a hundred different sets of criteria to 28 sets and now we're going for one. And apparently with much better understanding of what we're trying to achieve but it's still a compromise and it still doesn't tackle that fundamental divide. ATKINSON And Francine, back in the real world with your mum, do you think this will actually make any difference to her? LAWRENCE I don't think it will because we seem to have this all or nothing - you're either a self-funder or you are so severely ill that you qualify for continuing care, which means the NHS pay for it and there doesn't seem to be anything in between. And so this framework, to me, doesn't look as if it's going to provide anymore help for us. MCCLENNON Francine Lawrence, Melanie Henwood and Andrew Chidgey were talking to Carolyn Atkinson. Back to the You and Yours homepage The BBC is not responsible for external websites |
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