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| TX: 24.11.05 - Dementia: Paying for Care PRESENTER: WINIFRED ROBINSON |
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| 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. ROBINSON The dispute about care - who should provide it and who should pay for it - is a subject we follow closely here on You and Yours. For people with dementia it's an even more problematic area. Many claim that they're discriminated against by health authorities who may assess people as being ineligible for free NHS care and instead insist that local authorities should provide what's needed. This care is means tested and people with dementia and their families can be presented with large bills. The Alzheimer's Society estimate that the annual care cost of people with Alzheimer's Disease alone is more than £7 billion and that much of that is paid for by individuals. But all this could be about to change. A new national framework for continuing NHS care is expected in a few weeks and campaigners hope it will particularly benefit people with dementia. Our disability reporter Carolyn Atkinson has been investigating. Carolyn: ATKINSON Well at the moment there are two types of care. Firstly, social care, that's personal care provided by carers and care assistants which is means tested and provided by the local authority. Secondly, there's healthcare, which is nursing care and that is provided by nurses and doctors and it is free on the NHS. Now the question is often - where does social care end and healthcare begin? And someone once quipped that if your carer pours bubble bath into your bath then it's social care and if they pour in disinfectant then it's healthcare. Which just about sums up the whole complexity of this system which many people argue is inadequate. Well Melanie Henwood is a health and social care consultant, as well as a special advisor to the House of Commons health select committee. HENWOOD What we're talking about here essentially is when people have long term needs for care. And that's when they don't need the care of an acute hospital but they do have continuing needs. Now that may be continuing healthcare or it may be social care but basically people's needs are assessed and that should be a multidisciplinary assessment which goes into all their care needs, what help they need, what support they need and then makes the decision whether this should be a fully funded NHS placement or whether it's a social care package or if it's some sort of hybrid between health and social care. ATKINSON So what is the difference then in terms of cost between social care packages and healthcare packages? HENWOOD Well as far as the individual service user or patient is concerned the difference is very, very significant. If someone is assessed as needing fully funded NHS continuing care then they make no contribution whatsoever towards the cost of that care because it's regarded as part of the health service. However, if they're assessed as needing social care then they become subject to the means testing regime operated through the local authority and they may have to pay very significant amounts out for that care package - several hundred pounds a week. ATKINSON Now obviously nobody wants to pay more than they have to but people with dementia and their families and their carers say that people with dementia are being discriminated against by this current system, what is the reasoning behind that, what are they saying? HENWOOD Eligibility for continuing healthcare is determined by reference to what people refer to as eligibility criteria. Now there is a framework for these but across the country the actual specifics of criteria are worked out by the 28 strategic health authorities and they refer to the complexity of people's conditions, the stability and the predictability of their needs. And it's on the basis of the judgement around that that it's then decided whether or not this is NHS continuing care. Now those criteria should in fact cover all client groups - all adults in need of continuing care should be accommodated within those criteria. The problems have arisen because of the way they've been interpreted at local level and that particularly impacts on people with dementia and some other conditions - people with progressive and degenerative conditions, such a motor neurone disease, Parkinson's Disease, may also find themselves disadvantaged. It's not because the criteria are discriminatory but that the effect of the way they're misinterpreted on occasions and misapplied can cause discrimination against people with particular needs. And especially they've been very heavily focused on physical care needs, haven't taken sufficient account, it is often argued, of people's mental health needs, of their psychological needs, so that tends to discriminate against people with dementia. ATKINSON Well Paul Phillipson would agree with that. His mother has Alzheimer's and for four years he's been trying to get continuing care funded for her by the NHS. He says it's like being a contestant in a boxing ring. PHILLIPSON We had no previous experience of this kind of illness in my family and so it really was a wake up call when mum became ill and at that time I naively thought that the healthcare system would be there to support her and support us as we dealt with her disease. It appears to me that people with dementia are particularly discriminated against with these artificial rules and regulations. The basic anomaly is that care payment is determined on who gives the care, not what care is needed. And from my point of view a very ill person who needs a lot of personal care is a very ill person who needs a lot of personal care. ATKINSON Round one. The contest begins. Attempting to get social care. PHILLIPSON Every month on we need a little bit more help. It quickly became apparent that she couldn't live on her own and we started the first of the punches in getting engaged with the social services team and this support is social care, it's not medical care, it's not provided by a nurse. At that time the care consisted of coming in in the morning, getting mum out of bed, getting her dressed, bathing issues, personal hygiene issues. Over time the costs escalated and we had to pay for it because we'd sold her house and because mum had that money the means testing meant that it got to about £215 a week capped by the social services and they paid what came in above that. And over that time we paid about a total of £3,000 plus in fees to them and on top of that about £500 a week respite care once every six weeks. ATKINSON The end of round one. In the corner. PHILLIPSON Mum's needs are becoming more physical than mental. A lot of trouble moving around. We made the very difficult decision to place mum in a home and that was when I realised - and it was a big body blow - what the real cost would be long term - about £450 a week, £23,500 a year, I worked out that we only had money for a couple of years. ATKINSON Round two. Now it's the backup for free healthcare. PHILLIPSON I decided that I was going to take it head on and really fight for the issue. I'd heard about NHS fully funded care and applied for it. By now the blows are raining in faster as you go up this process, it becomes tougher and tougher and tougher. And I received as a response to mum's first assessment just a handwritten note that said that she didn't qualify for this continuing care. The process told me that I should ask for a review panel. I went to the review panel and that's really when it became clear to me the size of the opponent that I was facing and how strong they were. ATKINSON The bout isn't over yet. PHILLIPSON Two days after the panel I received their judgement. I've got the letter here: "The decision of the panel is to support the recommendation of NHS funding for Mrs Phillipson in the medium band of indicator three." And that's a technical term from the policy. It says: "While the physical health of Mrs Phillipson is declining her health needs are stable on a day-to-day basis. A registered general nurse oversees her care but it is given by a trained care assistant." ATKINSON Round three. Dealing with the ombudsman. Time to throw in the towel? PHILLIPSON I really began to get frustrated. The chief executive of the PCT advised me that there was no further right of appeal but that I could go to the ombudsman. I was pushed around from PCT to hospital trust to strategic health authority and now I was being told I had to go to yet another layer of authority. Well I did and the ombudsman advised me to go to yet another authority, so I'm currently going through the process with the Healthcare Commission, have been doing so since March. Every carer would much rather be giving all of their time and attention and love and everything to the person who deserves it, the person who needs it, the person we'd like to but instead of that we have to spend hundreds of hours dealing with the bureaucracy, the administration and the punches that are rained down upon us from the system. ATKINSON Paul Phillipson refusing to be knocked out by the system. Well independent health and social care consultant Melanie Henwood is still here. Melanie, is that typical of the experiences that families face? HENWOOD Yes I think Paul's story absolutely illustrates both the frustrations and the sheer complexity and difficulties of understanding the situation. As a lay person people suddenly find themselves confronted with this bureaucracy, with terminology that they don't understand which they've never come across, and they're expected to understand the difference between health and social care. And as Paul said very clearly it's not about that difference, it's about the person's needs and trying to understand or make sense of whether this is the health service's responsibility or whether it's the local authority is actually very, very frustrating and difficult for most people to cope with. ATKINSON It does seem that everyone agrees that the current system is not working as it should be and that people are having to pay for things they perhaps ought not to be paying for. And there are now plans by the government to bring in a new system. What is that going to be? HENWOOD There's going to be a new national framework essentially for continuing care. I was commissioned by the Department of Health 18 months or so ago to look at what was happening with continuing care as an independent observer and that identified a number of problems in the way that the criteria are applied at local level, the inconsistencies, the problems between different client groups and so on. And as a result of that the government decided that it would put in place a new much clearer and stronger national framework that for the first time will give us national eligibility criteria. So you won't have the situation of having different criteria applying in different parts of the country, there'll be one set. But more than that, because it's not just about the criteria on paper it's about how they're interpreted and applied, so there'll need to be a national approach to assessment and to application of the criteria and national training to support that so that it is genuinely a consistent approach which doesn't discriminate against different client groups and which does address the needs - continuing healthcare needs of people in the entire population. ATKINSON So do you think this could be as close as we get to a solution to this problem? HENWOOD It has to be said that this still maintains the separation of the health and social care system, it's not going to remove that anomaly, so there will still be people who are judged to qualify for continuing care and others who won't. But I think the expectation is that the new system will certainly be a lot fairer. We will see more emphasis on looking at people's needs in the round, not just their physical needs but also their mental health and their psychological needs. And that should be fairer to people with dementia. ROBINSON Health and social care consultant Melanie Henwood, talking to Carolyn Atkinson. Back to the You and Yours homepage The BBC is not responsible for external websites |
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