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UNCORRECTED TRANSCRIPT OF ORAL EVIDENCE To be published as HC 399-i House of COMMONS MINUTES OF EVIDENCE TAKEN BEFORE HEALTH COMMITTEE
Thursday 10 March 2005 MS ELAINE McHALE, MS CATH ATTLEE, MR MICHAEL YOUNG, MS DENISE GILLEY and MS YVONNE COX MS PAULINE THOMPSON, MS JULIA CREAM, MR JOHN WHEATLEY and MS ANNE WILLIAMS MR JOHN PYE, MR MARTIN GREEN, DR JACKIE MORRIS and MS JO PECK Evidence heard in Public Questions 1 - 191
USE OF THE TRANSCRIPT
Oral Evidence Taken before the Health Committee on Thursday 10 March 2005 Members present Mr David Hinchliffe, in the Chair Mr David Amess John Austin Mr Keith Bradley Mr Simon Burns Jim Dowd Dr Doug Naysmith Dr Richard Taylor ________________ Memorandum submitted by The Local Government Association (LGA) and the Association of Directors of Social Services (ADSS)
Examination of Witnesses
Witnesses: Ms Elaine McHale, Director of Social Services and Health, Wakefield Metropolitan District Council, Ms Cath Attlee, Director of Commissioning & Modernisation, Hounslow PCT, Ms Yvonne Cox, Chief Executive, Oxfordshire Learning Disabilities NHS Trust, Mr Michael Young, North West London Strategic Health Authority, and Ms Denise Gilley, County Durham and Tees Valley Health Authority, examined. Q1 Chairman: May I welcome you to this session of the committee at the start of a short inquiry into continuing care. We have three separate short sessions this morning. As we are trying to get through so many witnesses and questions, may I ask colleagues to be brief and witnesses be reasonably concise. May I thank you for your written evidence. Would you briefly introduce yourselves to the committee. Ms Gilley: I am Denise Gilley, Policy Leader for Older People at County Durham and Tees Valley Strategic Health Authority. Ms Cox: I am Yvonne Cox, Chief Executive from the Oxfordshire Learning Disability Trust. Ms Attlee: I am Cath Attlee, Director of Commissioning & Modernisation at Hounslow Primary Care Trust and Chair of the North West London Continuing Care Review Group. Mr Young: I am Michael Young, a development manager for partnerships at North West London Strategic Health Authority. Ms McHale: I am Elaine McHale, Director of Social Services for Wakefield, but representing the ADSS and LGA. Q2 Chairman: May I begin by just exploring the issue that we, the committee, come back to in almost every inquiry that we do that relates to social services and health, and that is boundaries. Obviously the boundary is at the heart of much of what we are going to be talking about this morning. I have a clear recollection of Frank Dobson in front of the Committee when we were having an inquiry into the relationship between health and social care and the division between the two. I asked him if he could give us a definition of the division between health and social care. He said that he honestly could not. That was probably five or six years ago. Are we any nearer establishing a division? Can anybody give me a categorical division between the two areas? Ms Gilley: I think we are nearer but I do not think, unfortunately, unless one of my colleagues is about to volunteer, any of us could give you a categoric definition. Much of that is based on the needs of individuals, which will differ. If you are going to take account of those on the one side, which is what we are trying to do currently, and you have a very tight definition, that will exclude some people who otherwise should be funded by the NHS. Ms Attlee: As policy and practice change, the boundaries are shifted, so we are looking more and more at different professionals taking on different skills and mixing those. It is not helpful to define things specifically as a health input or a social care input. We are looking more and more at being able to provide complex packages of care by a range of professionals. In some ways, the policy here is a little behind the practice around that developing role. Ms McHale: I would like to echo what my colleagues have commented on there and the fact that we do have to modernise this criteria and guidance to reflect the aspirations of policy between both health and social services. That is potentially slightly easier to define but potentially restricts what social services do because of the different statutes available. Q3 Chairman: One of the issues we have talked about on many occasions is removing completely the definition of a boundary. If that were to happen, would it not make your work a good deal easier? I am struck that when we are told to remove that boundary, inevitably Treasury have to move one way or another, either to introduce charges to the NHS for what is currently free care, or to remove means-tested social care charges, which would be tough for any government to do. If one looks at the cost of what I regard as an industry around the division between the health and social care of people on both sides of the fence attempting to make sense of something that, frankly, is not sensible, would we not save a substantial amount of money? Has the amount of money that would be saved around the margins by abolishing this division ever been calculated? Ms McHale: There is an element of truth in that. There is lot of public funding being spent on legal definitions, particularly around this policy guidance, and much wasted time and energy in trying to achieve an outcome for individuals in different local authorities. Fundamentally, there is a lot of unmet need here as well in terms of the application of continuing care. I do not think this is properly resourced. Whether there is sufficient to be able to get it out of what is going into the legal challenges or the differences of opinion is potentially a bit underestimated. Q4 Chairman: Has anybody in an organisation like yours that has obviously been involved in this issue for a long time, the ADSS, along with, say, the NHS Confederation or somebody who has a role in health actually looked at an estimate of the costs of abolishing the charges on the social care side and balancing that against the current costs of policing this division about which none of us feel able to come up with a definition? Ms Gilley says we are getting near it. I can recall getting near it 25 years ago but we are still not there. Has the ADSS made an estimate or a guesstimate of this? Ms McHale: I cannot honestly say that anyone has attempted to guesstimate. I would like to add that as there is closer movement towards what health and social services do, that means some things have been lost in what social services have done previously. That is potentially around the prevention agenda and the domestic/domiciliary aspects of enabling people to live independently. These things are not calculated. Ms Gilley: The nearest you would be able to come to it, and it was some considerable time ago (not quite as long ago as 25 years, you will be pleased to hear) is the Royal Commission into Long Term Care, which did quite a lot of work in calculating various scenarios. It would be possible to extrapolate some of the information from that. The amounts were hugely significant to the Treasury. Q5 Chairman: It is fair to say that the cost of policing this divide is a very sizeable amount of money, is it not? Ms Gilley: Yes, but you would have to extrapolate the figures from the Royal Commission and then perhaps look at one local area and extrapolate from that. If you multiply by 28, for instance, that would give some order of magnitude of one to the other. Ms Attlee: This is an important calculation that needs to be done. It would be increasingly difficult to do. Certainly, in the way in which we have assessed and gone through the process of assessing people's needs for continuing care, we have tried not simply to focus on what is the financial responsibility but to look at how we use this process to ensure that care needs are appropriately met. We are disentangling the policing and financing issue from doing a proper assessment. Finding the appropriate care package would be quite difficult on the costing elements. That bit around doing a multidisciplinary assessment, recognising the appropriate needs and how we meet those in a care package would still need to be done, whether or not it was met through fully-funded NHS care or through a local authority funded package. Q6 Chairman: One of the issues we have picked up in evidence we have received is the impact of different eligibility criteria. Ms Gilley suggested that in looking at costings, you could look at one area and extrapolate from what is happening in one area what a national cost might be. One problem with that is that we hear the situation is different from area to area. Can you give us examples of some of the difficulties that perhaps you pick up with different eligibility criteria when you work physically across boundaries? Ms McHale: I have led a group of West Yorkshire local authorities and we have agreed the eligibility criteria with the strategic health authority. We believe we have a good partnership approach to its implementation. However, there are differences in its application, even though the eligibility is the same. We have pulled a group of representatives from both health and social services together to look at cases every now and again to see why in Bradford you might get continuing care with this case but, if you applied for it in Wakefield, you would not. There are still difficulties with the same eligibility criteria and the same enthusiasm to implement that; there are differences of outcome. Q7 Chairman: Be careful how you answer this next question because it might land on your desk. I can think of a particular case I am dealing with where a Wakefield resident has gone to Barnsley, which is in a different SHA where presumably the organisation is somewhat different? Ms McHale: That is interesting because payment by results is going to make this even more difficult. Q8 Chairman: Can you say a bit more about that? Ms McHale: Yes. Payment by results is going to mean a transfer of cases across a wider range of providers. You can get the first assessment of continuing care in an acute hospital. You will be asking staff potentially to work against different interpretations of continuing care criteria for any amount of patients coming in from different locations. Potentially, it will become even more difficult for people to accept continuing care by that change in policy alone. Q9 Chairman: The choice agenda has a huge bearing on this? Ms McHale: It does, and the modernisation of this policy has to take account of these new policies that are coming in, too. The same would apply to the impact on direct payments under Section 117. Ms Attlee: It is worth pointing out that however clear the national framework was or a local framework is, there will always be an element of professional judgment. We have discovered, in terms of trying to eliminate the inequitable impact, that it is about putting in a system with the checks and balances. You have a multidisciplinary team doing the assessment; another multidisciplinary panel validating that assessment locally; and then a strategic health authority-wide or higher level authority validating across the board, so that you are constantly doing that cross-checking. You are not going to eliminate the element of professional judgment, even if you have standard criteria across the country. Every clinician will interpret slightly differently, and practice is changing all the time. You need constantly to be validating against that new practice. It is important that in any system we implement you build those checks and balances in. One of the advantages of the latest criteria on implementation has been in allowing us to recognise that and to establish those mechanisms jointly with local authorities, so that we are together validating on a regular basis. That needs to be built into the system throughout, preferably involving users in the voluntary sector, so that we are getting that validation throughout the system, not simply through the statutory bodies. Q10 Chairman: Do you think that with the development of common single assessment processes there is now much greater understanding between professionals as to what the criteria are? Where criteria are established, is there a greater ability to get to an agreement on the criteria or whether someone satisfies the criteria? Has that improved? Ms Attlee: Yes. Ms Cox: I was reflecting on some of your earlier questions and answers. In looking at learning disability services, which in many respects have been at the forefront of much of this work, 10 or 15 years ago we were used to having the money put together. There has been general acceptance of a multidisciplinary/multi-agency approach in terms of the assessment of people's needs and how those needs on an individual basis can be met. It is important that as we develop new guidance that is picked up. It is not just about continuing care for older people but for all of the population. There are probably some models around in groups of people that may be smaller per head of population but are equally important. I think the single assessment process, which we are now seeing in children's services and for learning disability and so on, begins to iron out some of these things. That would undoubtedly give a better consistency and level of understanding by everybody. Q11 Chairman: I was struck by a comment that Anne Abrahams, the Health Services Ombudsman, made to one or two of us who met her recently. She said that the professional joint working, currently common practice in most areas, left departmental demarcation lines behind it many moons ago. Is this not an area where the demarcation lines are grossly outdated and it would help you people if those demarcation lines - and I can be repetitive and boring on this subject, as I have been for nearly eight years on this committee -were abolished and we moved forward without that problem? Would that not be extremely helpful in moving forward in the future? Ms Cox: I think it would be helpful if you look at the improving life chances for disabled people and the view for provision for that over the next 25 years. That is broader than simply health and social care. That would embrace education, the benefits agency and so on. The vision behind that around individualised funding, using direct payments and a variety of other methods would seem to indicate a very different and better way forward, leading on from the issues of choice and all the things that the NHS has done, but linking into other mainstream policies around social care - housing and so on. Q12 Dr Naysmith: On this subject, it might be useful to ask Ms Cox at this stage: do you think we should have separate criteria for different client groups? I know you said that the older ones are much larger in numbers than some of the others. Do you think that would be the right thing to do? Ms Cox: Personally, I think that the criteria, particularly for adults, does need to be different. We piloted a modified system from Thames Valley recently. I am struck by the emphasis on what people cannot do. The whole issue around learning disabilities, certainly in valuing people and improving life chances for disabled people, is about valuing what they can do and what their contribution can be. I think we need something that matches those two together. I do not think that is either difficult or impossible but you have to know that a 25-year old going through this process will have very different expectations for the rest of his life than an older person would have and the processes they go through. This is something that ought to be reflected. This is about that modernisation. Q13 Dr Naysmith: What stops that happening everywhere? You say you have a pilot scheme. Ms Cox: Around parts of the country they have begun to do that. I know that certainly in north London they have used it both for people with a learning disability and people with mental health problems. There is nothing very specific in the guidance. The guidance is predominantly around older people, delayed transfers and so on, and the issues those raise. It would be helpful if the guidance built on that and picked up where services are and the direction in which they are going for those individuals and recognise that the NHS will not be the total provider for somebody in that age range. They will want a broad spectrum of services, of which the NHS may be a very important part, but there will be other elements that will be equally important. Ms Attlee: I might venture to disagree. Most of that is absolutely right but we should be making sure that for older people those principles of promoting independence and enabling are applied to them, rather than taking a different approach from that for younger adults. Certainly the evidence from Age Concern and everyone else is that older people are not a distinct set of people who suddenly lose all their aspirations. These are people with a similar range of disabilities, abilities and aspirations and we should be ensuring that promoting and enabling approach is across all adults, however old they may be, rather than taking separate approaches. Certainly in north west London we have criteria that apply across the board and recognise a huge amount of dual diagnosis and multi needs that you cannot simply define as a learning disability or applied to older people or whatever. We try to encompass all of those across the board. Q14 Dr Naysmith: What do you think of that, Ms Cox? That is quite the opposite of what you were arguing. Ms Cox: It reflects what I said earlier about learning from other areas. I am hearing that in north London they have done that to promote independence, choice and control in terms of valuing people. In learning disability terms, that is something we have been striving towards for a very long time. My concern is that we do not go backwards. If what we are saying is that we want to move forward in the same direction for all groups, that is a fantastic aspiration to have. Ms McHale: I would add a little bit to this part of the debate in that you do not need to go down separate criteria guidance if you focus on the needs of the individual. Need should determine the outcome rather than the potential professional input that is required if there are different service user groups. You should consider the impact that continuing care could and should have on children. I firmly believe that if children were accommodated within the continuing care policy, then you would see a different long-term commissioning arrangement of service provision, which would build for the future and contribute to the aspirations we have around government policy. Q15 John Austin: For clarification, may I add to an earlier question from the Chairman that the Chairman finds it incomprehensible why anybody would move from Wakefield to Barnsley! I want to come on to the independent review the department published and the reported response from SHA staff which described a staggering lack of central guidance. The Ombudsman, in her report, has said of the guidance that there was a question of misinterpretation and misapplication. Is it a lack of guidance or is it a lack of consistency about applying guidance, and could the Department have done more to ensure a consistency of approach? Ms McHale: Personally, I think there have been several attempts at issuing guidance, which have facilitated the inconsistency in application. One person's interpretation of complexity or intensity is different from someone else's. I think more could have been done with regard to clarification and transparency about the definitions and the applications. Ms Gilley: One of the issues at the time, following the publication of Anne Abrahams' first report on continuing care, was that the Department of Health was not quick enough. That was our issue in terms of the processes that we were putting in place in order to try and deal with the numbers of people who were contacting us, et cetera. That is my comment. I do not know if there was going to be much that the department was in a position to do at that time that was going to be helpful on the criteria themselves. The issue was about helping strategic health authorities, our primary care trusts and social services to deal with the numbers of people who were asking for their cases to be reviewed. Mr Young: I came new into this at the same time as the guidance was coming out. I think the guidance was useful and has improved the consistency. Certainly, having seen the work done by the predecessor health authorities, the guidance has already enabled us to improve the consistency of application and the patient experience of being assessed. Working towards a national framework with further and more guidance will support this even more, particularly around the guidance of involving users and carers in the assessment process and also in understanding the decisions. Q16 John Austin: If we go back to the Ombudsman's recommendations and the review, there has been some criticism that the Government's action fell short of the Ombudsman's recommendations. I know my colleague, Dr Naysmith, wants to pursue this with the next set of witnesses. We have heard a lot about the postcode lottery and has the review merely reduced the number of postcodes from 95 to 28? Ms Gilley: I should not really be saying this. I do think that over-simplifies things because it is to do with the assessment process. It is not to do with 28 strategic health authorities, with all due respect, but the number of primary care trusts and their partners, the social services departments. In terms of the decision-making process, that is generally the first and very key stage of that process. It is about monitoring them and their consistency of decision-making and making sure that people who are assessing and people who are deciding are doing that in a consistent and transparent way. Q17 John Austin: Mr Young has mentioned the question of the National Framework. Perhaps I could put it to all of you and ask what that framework should include. Should it include a complete revision of the eligibility criteria and should it address both health and personal care issues? Ms Attlee: It should not be a complete revision in the sense of starting again. There has been a huge amount of progress in the criteria that we now work to. As you say, the 28 health authorities are much closer in their approach and delivery than the previous 96 were. The review group is in place and doing that work; it is building on all that good practice that has happened and the good policy that has been developed. It is not about a wholesale review but about taking the best and confirming that as the national standard, which will be very beneficial. We have certainly developed our policy in conjunction with local authorities. It is absolutely critical that it covers the whole spectrum; otherwise it really makes it very difficult to implement the rest of the policy around integrated services and integrated care packages for people. That is what we are all about delivering. Ms McHale: In future, the policy should concentrate on being transparent, equitable and acceptable. It certainly should look at how we do things differently, building on good practice and good examples. It has to be fit for purpose for the changing services. It is not about just doing exactly what we have been doing and a bit more of it where it is right. We have to change to develop the policy so that it reflects how we want things to work in the future. That does mean encompassing issues around learning disabilities, direct payments, challenging behaviours and everything else. Q18 John Austin: And a consistency of approach on assessment procedures? Ms McHale: There should be a consistency of approach on assessment procedures and ownership of continuing care. We talked about the 28 strategic health authorities but the PCTs have to own this as well. It should not be resource-driven. There is a huge element of resource availability that relates to interpretation of eligibility. Q19 John Austin: I assume that organisations like the ADSS are in continuing negotiation or consultation with the department over this? Ms McHale: We have been invited to participate in the revision and we are very pleased about that. We would like to be partners in it and not just required to sign up to agreements. Q20 John Austin: You have no indication when they are likely to be ready? You have no inside information about that? Ms McHale: No, I have not. Q21 Dr Naysmith: We have had lots of submissions putting in evidence to the Committee saying that confusion exists widely between the National Health Service continuing care system and the registered nursing care contribution framework I see a few people are nodding, so obviously that exists. Do you think it is a problem? Does everyone think it is a problem? Is that generally recognised? Ms McHale: It is. Q22 Dr Naysmith: What do we do about it? Ms Gilley: It goes slightly wider than that. One thing we have found is that members of the public are very confused about some very fundamental things, the most fundamental being that NHS services are free and social care services are charged for, so I think that is the first point. Q23 Dr Naysmith: I was not thinking about the public but about the people who do the commissioning, but both will be true, I am sure. Ms Gilley: The other things flow from that. Another issue is that different sets of people on occasions have been looking at nursing care bandings from those who have done continuing care. We have tired to bring that together so that, in terms of local decision-making panels, they do both. They will first and foremost look to see whether an individual is eligible for continuing health care and only if and when they have decided that that person is not, will they then look at banding, if they are in a nursing home. Q24 Dr Naysmith: That is the way the system is supposed to work. Why does it not work like that? Ms Gilley: The system in County Durham and Tees Valley certainly does now work like that. I cannot promise that it has always worked like that but that is the premise upon which we make our local decisions. Ms McHale: That is correct. It is supposed to work like that. The Delayed Discharges Act requires the continuing care assessment to be made first. If you look at the guidance for the RNCC, it gives definitions and examples of the highest banding being below that of the Coughlan outcomes. There is a huge level of confusion about this. The continuing care banding has to be differentiated from that. I would add that there is not a proper process for review. If you are in a nursing home and you are on the high banding of nursing free-funded care, then if you then deteriorate into continuing care, potentially there is not the opportunity automatically to have that resolved. There are issues about that. Q25 Dr Naysmith: What would you say should be done about that? Ms McHale: We have to eliminate the discrepancy around the examples in the guidance for the higher level of nursing funding and re-emphasise the requirement for the continuing care assessments to be done, first and foremost. There has to be built in the period of review and monitoring, the availability and accessibility for people to do that automatically. Q26 Dr Naysmith: Ms Attlee, you wanted to come in on the general broad thrust. Ms Attlee: I am slightly surprised about that because certainly there is a built-in expectation that a nursing review would be undertaken every year and at any point, either the inmate or the nursing home can trigger a continuing care assessment. Again, it may be about practice not reflecting policy. The framework is such that this should be a regular review of nursing care application. Q27 Dr Naysmith: This is the whole area that we are investigating: why in different places do different things happen, even though the criteria are supposed to be laid down. Going on to what is probably a slightly more embarrassing question for all of you: does some of this have to do with the fact that primary care trusts have fixed budgets and that one of them is more expensive than the other, so getting towards the end of the year --- Some people are nodding and some shaking their heads and saying it is not true. Ms McHale: There is a big element of difficulty facing primary care trusts in balancing their budgets and dealing with the demands that continuing care can make. We have done some surveys of local authorities. We know there is at least one PCT which has a cap on how much per person they will give towards care. Q28 Dr Naysmith: Can you be explicit on that? Ms McHale: I cannot. I would have to supply that information to the select committee later. Q29 Dr Naysmith: It would be good if you could do that. Do you think it never happens, Ms Attlee? Ms Attlee: No, I am not saying it never happens. Certainly PCTs have financial problems and that has a bearing effectively on how things are implemented. I do not feel in our area that is the reason why differences occur. Certainly it puts a pressure on the whole issue, and all the more reason why it has to be done in a joint fashion. Certainly in our case most of our commissioners who are commissioning long-term care are jointly employed by health and social care. The issues about whether it is our budget or your budget are not the key issues as to why differences occur. That may well be the case in other parts of the country. I can only speak for north west London in this regard. We have tried to build into the system that it is about the needs and the appropriate placement and appropriate funding source and then, yes, the budget pressures appear, but they appear as part of our overall position. You may be familiar with north west London's financial position perhaps as a result of that. Q30 Dr Naysmith: You may not realise but this could well go out on the radio on Sunday night and people in Hounslow might well write in and say they do not recognise that system, but you are happy to say that? Ms Attlee: I am at least confident in saying that if somebody has been denied NHS full funding in north west London it is not because we have not got the money; it is because they do not meet the criteria. Mr Young: I would support that for the Strategic Health Authority. Q31 Dr Taylor: I live in an area where I am just on the edge of one strategic health authority abounding two other strategic health authorities. Like other members, I do have problems about where the criteria appear to differ. I quite take the point that you have made that it is very often the interpretation of the criteria rather than the criteria themselves, but did our two strategic health authority representatives take into account the neighbouring strategic health authorities' plans when they made theirs? Mr Young: The work in north west London had started very early, following the 2001 guidance. This was before my time. Cath Attlee chaired a group on this. I think other health authorities around - and as London health authorities we meet with other health authorities - had looked at our criteria and were seeing what was good and what was relevant to them. There had been some work done on that. Q32 Dr Taylor: There was a certain amount of consistency between areas? Mr Young: Yes. Q33 Dr Taylor: What about in the north? Ms Gilley: I would say something similar in the sense that we certainly had more detailed discussions with our more northerly SHA, which is Northumberland, Tyne and Wear. We did also have some discussions with people from Yorkshire and also from the north-west to try and find out what other people were doing, what their approaches were, how they were going about trying to get consensus to steer the whole process. Q34 Dr Taylor: Do you come across problems with cross-boundary flows where somebody is assessed in one area and goes to a residential home in another area? Ms Gilley: Yes. It would be foolish to say that there are not those issues but there have not been any cases that we have felt have been hugely unresolved. We have had a number of people who have ended up in acute care in the north east and who have then wanted to move south to be nearer relatives, and there has been a negotiation but we have reached agreement. The person has not ended up remaining in hospital or going somewhere else; they have gone where they wanted to go. Q35 Dr Taylor: Again, with the strategic health authorities, turning to the interpretation of the criteria, how do you monitor PCTs on their performance? Ms Gilley: This is the point I was trying to make earlier. This is going to be important nationally so that something happens on this. We do have a software programme. I say that with my fingers crossed. It does exist and it does work but it does not give us the level of data extraction that we would like. It is the beginnings of something. To be truthful, I think that would be the only way in future that you would be able to do this in terms of looking at spend, numbers of joint packages, numbers of cases for people who have a learning disability and through a whole range of issues that you then would want to pick out and look at. Then, as you would do with any other data, you can begin to examine the outliers. There might be good reason why you have particular outliers, but at least it would give you the prompts to do that. Mr Young: We are probably not quite at the stage of having the electronic data but we are looking at similar issues around placement and getting the financial information. There are difficulties about financial information in different PCTs that may be using some money from continuing care budgets and some money from community nursing budgets. Therefore, it is about having an understanding both as to how the budgets are put together and a consistency of understanding of what should be included in financial measures. We also have the SHA panel which sees cases. We have been using the panel's test for consistency of decision‑making across primary care trusts. We are also looking, as part of the training for assessors, at possibly assessing sample anonymised cases to check that the same results come out. Q36 Chairman: Would it be fair to say, comparing your area to Ms Gilley's area, that you would have more of what she terms outliers? My recollection is that when the community care changes came in, in looking at the London experience, people seemed to move much further afield from London than perhaps they would have done in an area like Durham. With your geographical area, are you likely to have more people moving out of your area and therefore you need to deal more with other areas than perhaps Ms Gilley would in the north east? Mr Young: Yes, but if they moved out of our area, they would be assessed under our criteria initially. This goes back to a previous question: one of the key problems is not necessarily the difference in criteria but the appearance of criteria, the way they look in each strategic health authority. That means that if people move out of area, and particularly in terms of wanting annual reviews (and it is very hard in London to do the annual reviews as we do send a lot of people out of area) someone who understands our criteria and our assessment tools would need to be able to assess them. Q37 Dr Taylor: On the same lines, please help me to understand this. The responsibility remains with the PCT but presumably it is usually hospital staff, trust staff, who do the assessment. Is that right? Ms Attlee: It is usually a multidisciplinary set of staff, so it may be a social worker and a hospital nurse or therapist, or, if the person is in the community already, a community-based nurse. Q38 Dr Taylor: The team would include people from the acute hospital trusts? Ms Attlee: If the person was in hospital, yes. Q39 Dr Taylor: I hate the phrase "toolkit" but there are various toolkits for this sort of purpose. Do you take note of which they use? Do you try to get them to use a particular toolkit across the patch? Ms Attlee: We have a standard health needs' assessment form which we ask all staff doing the health component of the needs' assessment to use, or they may use something very similar. Some of the hospitals in London have something very similar. As long as it produces the same set of needs' data, that is fine. They need to be able to produce a needs' assessment that is able to be summarised in the standard format that we use for the north west London criteria. Q40 Dr Taylor: Is that all a toolkit is, a needs' assessment form? Ms Attlee: There is a health needs' assessment and then there are other components that would amount to it, yes. Q41 Dr Taylor: If we do move to a single set of national criteria, which hopefully we will, would you then support a single toolkit or a range of toolkits? Ms Attlee: I think that would probably be a range simply in terms of professionals wanting to have their own. Q42 Dr Taylor: That is a range for different client groups or different professionals within this? Ms Attlee: There will be different tools that will add up to the whole needs' assessment. The health needs' assessment will focus on particular nursing needs, medical needs, et cetera. You have therapeutic needs, the psychological needs, et cetera. Normally there will be a number of components that will add up to the full needs' assessment. There will be different tools being used by different professionals as part of the multidisciplinary team to add up to that. Q43 Dr Taylor: Even with the different tools, you think you will be able to monitor and make sure that everybody is being treated equally and fairly? Ms Attlee: You have to be constantly validating. It is not a fixed scientific process. There needs to be constant validation, in the same way as the issue around developing the single assessment process is not static; it will be constantly developing. Yes, I think one can do that validation process. Q44 Dr Taylor: That is your aim? Ms Attlee: Yes. Q45 Dr Naysmith: We have just been talking about the confusion between the two things. A lot of people have said that the RNCC framework was useful as a national model. Does that suggest that a similar approach would be useful for the continuing care on a national basis? In a way, it is similar to a toolkit but this would be a national thing. Ms Gilley: You still come back to the same thing, that you do need a national framework, be it for nursing bandings or continuing care or anything else. However, this is about the application of that. What has never been done to my knowledge, and I may be wrong about this, a comparison of how people are banded to see whether somebody who is high banded in one of our nursing homes would have similar needs to somebody who was high banded in a nursing home in north west London. Yes, in essence, use it, but the same thing needs to happen about nursing home bandings as does about continuing care, which is about monitoring how they are put in place and implemented. Q46 Jim Dowd: Could I look at the area of the retrospective reviews and ask you all what you think the best mechanisms are for ensuring that the lessons that they reveal and the past failures that they uncover is incorporated and informs the development of the national framework? Mr Young: In north west London we have identified, through the retrospective reviews, problems in the past. The key improvement that has already been incorporated is that by asking our primary care trust assessors to go out and carry out these independent reviews, under an agreement that we as the 16 local authorities and PCTs together drew up, there is a consistency of approach, particularly about involving the carer in that review. The information from the carer has been incredibly useful. Many assessors have said to me afterwards that doing it this way, which for some of them was new, has really improved the process. I know that some of the PCTs are now sitting down with the carer and using the assessment tool: the carer has the assessment tool; the assessor has the assessment tool. They are doing it together and that is producing a much happier individual at the end. The individual understands the decision much better if he or she is involved in the assessment process. For north west London that has been far and away the most effective outcome from the retrospective reviews. Ms Attlee: Some other practical things have come out. One is the poor practice in terms of information and record-keeping, as has already been addressed, and which in a sense is being addressed separately as well by things like the Freedom of Information Act and everything else. Some of the poor practice that was clearly in place from 1996 onwards is already being tackled through a number of things. That needs to be very clearly built into the national framework: record keeping, assessment process, involving users and carers in the process, et cetera. I think those lessons are already being learnt. They need to be stated within any national framework for review. Q47 Jim Dowd: When you say "poor record keeping", do you mean the quality of what was in the records or the absence of records? Ms Attlee: Both. Q48 Chairman: Are we talking in particular about nursing homes here? Ms Attlee: Not just nursing homes but everybody. Q49 Chairman: That is right across the board? Ms Attlee: Yes, not everywhere but examples across the board. Q50 Jim Dowd: Are there any examples of where it has actually led to changes in practice? Ms Attlee: Certainly in information, record keeping has led to improvements in practice across the board, and again that has been addressed by things like the delayed discharges and the other initiatives that are going on in terms of record keeping. Yes, I would say there has been a huge improvement. Ms Gilley: In terms of accountability, people who are making the decisions jointly across primary care and social care now feel that they are accountable to the people about whom they are making the decisions. Being brutally honest, if you go back to 1996/97, that was not the case. That is why there may be records of someone's assessment but they tend to be very clinical about their disease process, et cetera, rather than actually their needs, and there is very little, if anything at all, about why they were not eligible for NHS funding. Q51 Jim Dowd: Why do you think the timetable, the projections, for completing the reviews has slipped so badly? Mr Young: Certainly, in north west London, we did not expect this issue of lack of records or the difficulty in accessing records. I think we assumed that we would be able to write off for the records and get them within 28 days. Unfortunately, that has not happened. Cath Attlee raised this issue previously. That has been a great difficulty. Now everyone is much more aware that there is this accountability in the process and the stream going up through the PCT and local authority multidisciplinary panel, then the SH panel, then the Ombudsman. People are much more aware that they must keep records and that those records must clearly explain the decisions they have made. Q52 Jim Dowd: It is not just a tardy approach to the reviews; it is really that the reviews have been far more complicated than was envisaged at the outset? Mr Young: Yes. Q53 Mr Burns: Have you completed all the reviews up to complaints received by March 2004? Mr Young: All the reviews have been completed in the first stage. In north west London we offer people a second opinion if they have been unhappy. All those second opinions have now been completed as well. Q54 Mr Burns: Do you know, off the top of your head, how many cases you have found where there was a mistake made and so compensation has had to be paid, either to the individual or to their family, as a result of that mistake? Mr Young: In north west London, and I do not have the exact figure, it is just over 100. Q55 Jim Dowd: Out of how many is that? Mr Young: Out of about 220-230. Q56 Mr Burns: As a matter of interest, what compensation have you paid? If an individual, at whatever time the wrong assessment was made, had then to sell his or her home, they could well financially have lost out considerably, depending on the state of house prices at the time they sold and now. Have you just paid the cost of the care or has there been an element of compensation to make up for the knock-on effects the wrong decision has had on an individual and their financial position? Mr Young: The formula we used is the cost of care plus the retail price index plus inflation. Q57 Mr Burns: In fact, no compensation has been paid if people have financially lost out because they have had to sell their house? Ms Attlee: We use Department of Health guidance. Q58 Mr Burns: Are you anticipating anyone who might be in that position suing you? Mr Young: We have not as yet heard from any of the people to whom we have offered restitution that that is what they are looking for. I have to say that when I gave you those figures of 100 plus that does not necessarily mean, because we have carried out these reviews in a very thorough manner, that the original decision was wrong. It could be at some point in between. Q59 Chairman: The circumstances may have changed. Mr Young: Yes, the circumstances may have changed at a later stage and we have identified that from that point. Normally what has happened is that these have been quite small amounts for the individuals because it has happened at a later stage. There have been very few at five years or whatever. It has normally happened for the last two or three months of someone's care. Q60 Mr Burns: Just one final point on this: when you make an offer to someone because a mistake has been identified, do you make the offer as a final settlement? Mr Young: We do, but we also give them the name of the local Age Concern representative to talk to about the issues as well. Q61 Mr Burns: Is that before they accept? Mr Young: Yes. We say, "You may wish to discuss this with someone". In the form it sets out that if someone agrees, it is a final offer. Ms Gilley: For us it is not; we would just make the payment. We use the Department of Health guidance and pay to people restitution rather than compensation. Q62 Mr Burns: Can you explain what your definitions of those two words are? Ms Gilley: We took legal advice about this as well, just to be clear. Restitution is to pay back the amounts of money that people had paid out, plus an amount of interest. We had also been using the retail price index. There are various different mechanisms you can use. That was the one we chose. Compensation would be as applied in the legal process: you look at somebody's loss and, depending on the circumstances, that could be way beyond the actual cost of the nursing home fees and it would then take into account house sale, et cetera. We did the former rather than the latter. When our primary care trusts do make a payment to somebody, they do not do it as a final settlement. If a person still wishes to appeal, in terms of the local process they can, and obviously they are still free to go to the Ombudsman service. That would be the direction that we would point them in, in addition to local advice centres. Q63 Mr Burns: What would happen if someone or a family turned round and said, "We are X thousand pounds out of pocket because we wrongly had to sell the family home and we want compensation"? Would you consider that on its merits or would you reject it out of hand? Ms Gilley: We would have discussions with the family. We have met with a number of people who have had particular issues. We would write to them formally to say that we will make them the payment of what is restitution and that they can accept that but it is not a final settlement. If they still have issues about how the money settlement has been calculated, then we would say that they should take those to the Ombudsman service. I understand that Anne Abraham's service has actually been asked to look at a number of cases similar to that. I do think that then that would be the right and proper place. Q64 Mr Burns: Potentially, the £180 million that the Government has identified as the probable cost that they are going to have to pay out for wrong decisions being taken could in fact, depending on the Ombudsman looking into those issues, be infinitely more than £180 million? Ms Gilley: I am not aware of how much of the £180 million that was identified has actually been spent. Mr Burns: What the Government is saying is that they have put aside £180 million, which they anticipate is the total cost they are going to have to pay out for the wrong decisions, presumably in the repayment of the costs of care and not compensation. Q65 Jim Dowd: Has anybody identified any cases along the lines that Mr Burns has just mentioned? Have you any experience that that has actually happened? Ms Gilley: No. Mr Burns: Ms Gilley has just said that she thought that some cases had been sent to the Ombudsman for a request. Jim Dowd: If you wanted to sue the health authority or the PCT you would just get on and do it. You would not need to ask the Ombudsman for that, would you? Mr Burns: No, but it would be cheaper to get the Ombudsman to do it. Q66 Jim Dowd: Not necessarily. The Ombudsman's recommendations are not mandatory. Could I come back to the numbers, Mr Young, for a moment? You said about 100 out of 220. How many more cases are you expecting to look at? Mr Young: The ones that have come since April, and I think we are up to cases that have come in within the last six months. I think we have about 10 to 15 of those. Q67 Jim Dowd: We are looking at an overall figure of round about 40 per cent of the cases you look at result in restitution? Mr Young: I think it was a bit more than that but, yes, of a certain amount, not necessarily the full amount. Q68 Jim Dowd: In the experience of the rest of you, is that a uniform pattern across the country, with variations? Is that generally the kind of level that is occurring across the country? Ms Gilley: I would say that ours was probably lower than that, but you have to look at the history as well in terms of the criteria that were in place in earlier years, and whether or not they were incredibly strict. If they were incredibly strict and restrictive at a certain point, the likelihood is that for that period it would result in a significant number of people who were wrongly denied. However, in areas where the criteria had been more fair, in that the level for continuing care was lower, then obviously you will find less cases. I am not sure it is possible to extrapolate them. Mr Young: Seventy per cent of our cases agreed have come from one previous health authority. That supports the argument. Q69 Jim Dowd: Which authority was that? Mr Young: Hillingdon Health Authority. Ms McHale: The £180 million quite rightly is payment back to the patients, the service users themselves, but it does not take account of the cost of the social services system where potentially social services has picked up a wrong decision. Q70 Chairman: So that we fully understand the difficulties in those cases where you are having to go back and look at the arrangements, and picking up this point about the record-keeping, which must be absolutely crucial - and many of us can now understand more easily why it has taken so long to deal with this matter - can you give an illustration of a case where the records have been crucial in establishing a move to a band at a particular point? I am assuming when you were talking about the records that you need to examine the records to work out at what level that person should have been at any particular time. Can you think of any cases where something would have triggered the move between bands that impacts on the banding assessment they should have been on? Ms Gilley: That is quite a difficult one because the banding system did not come in until 2003, so anybody whose case we were looking at prior to 2003 was that they may have had some nursing need, that the system of nursing home bandings and free nursing care did not exist. For those people it is very different, whereas for cases after that, after that time everybody in the nursing home was being assessed, so by definition the records would be much improved, because at the very least they would have had an assessment for the banding process. Q71 Chairman: Have you made any restitution for RNCC bandings? Ms Gilley: No. Q72 Mr Burns: That answer is not particularly surprising because presumably the criteria have been tightened up so much that you would not expect to be making mistakes since the banding came in, or by and large you should not. Ms Gilley: Yes. Q73 Dr Naysmith: It has been indicated to us in the evidence we have had that the people who have benefited most from the review system are those that are the most articulate and the most intelligent, and people who are probably most disadvantaged and need help are the ones who are not applying for review. What have you done to try and publicise what was going on and to encourage people who might not be the ones you would expect to write letters to their MPs and councillors all the time, but the forgotten ones? Ms Gilley: We have used local advice agencies to make sure that they understood the process in relation to contact, assuming they knew this was going on, but certainly ---- Q74 Dr Naysmith: That is partly the point, is it not? Some of them might not even know. Ms Gilley: If they did not, we contacted them to say "this is happening and if somebody comes in this is the kind of thing you need to say, if you want to have a discussion either with us at the health authority or our primary care trust". We gave them names of real people and telephone numbers to contact. Within that, coming back to reimbursement, we cannot underestimate that where people had been made a payment of reimbursement how that had worked. The North East, in many ways, has still got some very close, small communities, which are probably different from north-west London. We did have one instance where somebody who was a regular attender at the local working men's club then told everybody about the payment, and the primary care trust in Easington were then contacted by the club's secretary, who asked if we would like to look at all of these others. The point I am making, apart from the fact that it is amusing, is that it did pick up some other people who were family people who should have been funded. Obviously, we were unable to replicate that across all of the working men's clubs in County Durham and Tees Valley. We have also done some training as well. We were fortunate to have some money for two full-time trainers, so we have used those in terms of making clear, as part of that process, that if individuals are aware of other people's families, or whoever it may be - they need to think about asking for their cases to be reviewed. Q75 Dr Naysmith: Did you distribute leaflets to care homes, for instance, and advertise? Ms Gilley: Yes, we did produce a leaflet and have distributed that widely. Our issue with the advice agencies was that we wanted to contact them personally rather than just send them the leaflet, but we have produced written material. Mr Young: We had a similar thing. We had three waves of inquiries. The first wave was the people who had read the Ombudsman's report, and those were the ones that came before April; and I would say that those were largely the group you would have expected to have applied. The second wave was where each of the PCTs put out posters into nursing homes and GP surgeries asking staff as well as individuals if they were aware of anyone who might have been eligible. That was also when we contacted voluntary groups as well. We then got the third wave, the word-of-mouth wave, when the payments started coming out. The networks in north-west London do appear to work quite well. Q76 Mr Burns: Were you paying people when you found they had been incorrectly assessed, if they were dead what did you do? Did you pay it to the next of kin? Ms Gilley: This is the lawyer in me coming out, I am afraid. We actually produced some information and briefed all of our primary care trusts about the payments system because we needed to be clear that the payment was going to go to the right person. Where the person is deceased, you need to make sure if it is payment of a member of family, especially if there is more than one child and a number of siblings, and everybody else is agreed that it will be paid to the eldest child. Clearly, you do not want other people coming back with issues. You would have to make that process not overly onerous for people, so we would ask for some proofs around grants of probate, letters of administration or whatever, but if people did not have those, the primary care trusts and their finance departments would make inquiries to make sure the money was being paid to the correct person. Q77 Mr Burns: How did the money work, because the Government is funding it as to £180 million, so did you have to apply to the Department of Health every time you needed to make a payment, or could you draw on some fund? Presumably, you were not taking the money out of the local health budget. Ms Gilley: The health budgets are held by each of the primary care trusts now so the SHA does not have any money any more. Q78 Mr Burns: It has a bit. Ms Gilley: Well, to employ some of the staff, yes, but ----- Q79 Chairman: You are voluntary, are you? Ms Gilley: No, not yet! It was the primary care trusts' finance departments that were making the payment, and they had previously had an agreement from the Department of Health about the amount of money for each of the PCTs, so they knew that they were drawing the money against an allocation. Q80 Mr Burns: But the allocation was a ring-fenced one, was it not? Ms Gilley: Yes. Q81 Mr Burns: What was the average time between agreement between a family or an individual and the assessors about that there had been a wrong decision and the amount that was going to be paid to them, and the actual physical paying of the money? Was it a swift procedure, or were they having to wait months? Ms Gilley: If it was a local decision where the primary care trust and social services reviewed the decision and agreed that somebody was to receive restitution, then that process would be generally quite quick. I say "generally" because there were some exceptions in terms of looking back to find out amounts of money that had been paid, and sometimes that was a difficult process, particularly where fees in an establishment had been in part met by the individual and part by social services. Barring that, those payments were quite timely. Where people appealed to the strategic health authority to say they did not agree, then obviously it would take longer if our appeals process then did go back and say the person had met the criteria for a longer period. Q82 Mr Burns: What is your estimate of "quite quick". Ms Gilley: It sounds as though I am prevaricating hugely, and I am not, but it could be very quick in terms of a number of weeks between a family being given a decision or being asked to produce evidence and then receiving the money. In instances where it was difficult for primary care trusts to get information about fees paid, it could take some time. That process is very similar to trying to get clinical information assessments really. Q83 Mr Burns: I do not want to labour the point, but if the PCT was seeking to get information about fee levels, that suggests to me that no final decision has been taken on an agreement reached between the individual or their families on the level of payment they would accept, so you would still be in the process, surely? I am interested in once the process has been wrapped up and everything agreed, and a family or an individual said, "we owe you £20,000 because you were wrongly charged " - how long from that point to receiving the money? Ms Gilley: With all due respect, it does not happen like that, or in our area it does not. We would say to you, if it was a member of your family, "we think that your mother should have been fully funded from 17 July last year up until two weeks ago". The issue there is, if the fees had been paid in their entirety by her, then the amount of those fees is relatively easy to calculate. If she had had assistance from social services and they had paid some of the fee, given the fact that it was last year it would be relatively easy, but had it been in 1997 it would require some digging to find out what the contribution had been, and if it was over a number of years or over a time when fee levels had changed. Q84 Mr Burns: There comes a point when that information is discovered, and a proposal is put to the individual or their family as to what you should believe should be the payment to the individual. Ms Gilley: Yes. Q85 Mr Burns: At that point, when the individual or family receives the agreed money ----- Ms Gilley: Very, very quickly once the amount of money had been agreed. The point I was making is there could be some gap between saying money is owed for a period, and then receiving money, but less of a gap between saying "we have agreed it is X amount of money" and then the cheque. Dr Taylor: I really only want some written clarification if it is too long to answer, but I was very bothered when Ms McHale mentioned the difficulty of payment by results. Would it be possible to expound that in writing because it is terribly important that we do know how that impacts? Q86 Chairman: When I was talking about demarcation, you said your staff were employed in what sounded like a multi-disciplinary arrangement, employed in the same set-up. Can you explain how you operate briefly? Ms Attlee: In my patch we have joint commissioners for adult care, for older people with learning disabilities, mental health and disabilities. Those joint commissioners are jointly employed by social services and the PCT to commission services for those people from both PCT budgets and social services' budgets, so although we do not have a section 31 pooled budget, those individuals are responsible for both halves of the budget. So the issues around, "is it going to save this one or that one?" are not an issue in that sense. Obviously, we have a whole system concern about the pressure on the budgets, and that is a continuing pressure that we are tackling in terms of getting best value from the market, getting the best nursing home accommodation or residential accommodation, and the best packages for our clients. However, we are doing that together, not separately and competing. The panel that oversees the long-term placements and the funding decision is chaired by either a joint commissioner or one of the social services colleagues with a jointly commissioned panel, with joint commissioners on that panel as well as individual clinicians and social workers. There is always a collective decision about the appropriate placement and what is the appropriate funding. Q87 Chairman: In your experience, how common is that system elsewhere? Ms Attlee: I think it is fairly common but not universal. Q88 Chairman: I notice Ms McHale was shaking her head, which does not surprise me. Ms McHale: Is that what surprises you - that I am awkward and do not agree? Q89 Chairman: No, because I knew about the local practice obviously. Ms McHale: It is different definitely. Chairman: Thank you all for an excellent session. It has gone on longer than we anticipated, but we are most grateful to you. Witnesses: Ms Pauline Thompson, Policy Officer, Community Care Finance, Age Concern, Ms Julia Cream, Head of Public Affairs, and Ms Barbara Pointon, Alzheimer's Society, Mr John Wheatley, Senior Social Policy Officer (Social Exclusion, Work and Welfare) and Ms Anne Williams, Independent Complaints Advocacy Service, Regional Co-ordinator for the North West, Citizens' Advice, examined. Q90 Chairman: Welcome to our witnesses. We are very grateful for your participation. I am sorry we are slightly delayed on bringing you on, but I am sure you will agree, because you have all been present, that it was a very useful session. Can you briefly introduce yourselves to the Committee? Ms Pointon: I am Barbara Pointon. I am a carer of someone who is in the very last stages of dementia. We have been on the sharp end of the continuing care system. Ms Cream: I am Julia Cream, Head of Public Affairs for the Alzheimer's Society. Ms Williams: I am Anne Williams, the North West Regional ICAS Co-ordinator for Citizens' Advice Bureau. We help people through the NHS complaints procedure. Mr Wheatley: I am John Wheatley from Citizens' Advice. Ms Thompson: I am Pauline Thompson, Policy Advisor for Age Concern on care finance. Q91 Chairman: Can I begin by asking you a broad opening question. You have heard the arguments and concerns that have been put to us, and I am sure you are aware of some of the evidence we have received, and most of you have submitted evidence to us. What would be the easiest means of resolving the current difficulties within continuing care? Ms Cream: My top three suggestions for improving would be national criteria, national assessment tools and much better training for people doing assessments. We have additional concerns around the emphasis on physical health needs as opposed to mental health needs, and an issue that is coming up more recently is the difficulty of continuity of the care package when people move from social care to NHS continuing care. Q92 Chairman: What can be done about that? Ms Cream: Better joint working. Ms Pointon: Extend direct payments to NHS continuing care. Q93 Chairman: Say a bit more about that, Ms Pointed; and if you want to talk about your experiences in relation to your own circumstances - which is why you are here - how might that possibly help you? Ms Pointon: Direct payments I think are the best thing since sliced bread. They give a choice as to who works in our own home. I am going to talk mainly about caring for someone at home, because what is worrying me is the institutional mindset that is often brought to a lot of the criteria and the assessment processes. To pick up Julia's last point, Malcolm was on direct payments funded by social services. He moved to continuing care, and then there is the notion of the NHS being unable to directly fund those; and so we are under threat of having our care package upset. This is about the last thing that either the carer or the patient wants. I would like to know why the NHS cannot take over the care package as is, and simply fund it as is. Q94 Chairman: You make a very bold point about the way in which we view things through institutional care, which is something that one or two of us have argued for a long time. Do you feel you are speaking on behalf of other people who are caring for someone in the community, in reflecting that thought? Ms Pointon: I do, because I speak at a lot of conferences and seminars and people come up to me at the end and say, "your experience is my experience", so I think I am not a lone voice. Malcolm was assessed three times for continuing care, and one of the criteria that was being used was that it was not nursing care because I was not a nurse, so the care was being defined by who gives it, which is fine in an institutional setting but does not work if you are working at home because you do not have a nurse on tap. Secondly, somehow the notion that you are caring in a home does need a different approach, for example live-in care is essential in the late stages of some illnesses, and that is an area in which the NHS has very little experience of commissioning. Ms Thompson: There is a real problem about people who get care at home and who are in residential care. There seems to be a mindset that you can only get fully-funded NHS care in a nursing home, whereas it is quite clear in the guidance that you can get it anywhere. It is whether or not that personal care is paid for at home, because obviously it is a combined package of care, but if somebody's primary needs are health needs, then the whole lot is the responsibility of the NHS. Only last week, I had somebody who rang me up who was told that if they went into a nursing home, they would have the care package fully funded by the NHS, but if he went home the personal care would have to be funded by social services; therefore he would have to pay. I am thinking that this does not match up at all. The other real issue that needs to be addressed if we are going to get anything like a sensible view of continuing NHS care is that we have to sort out the registered nursing care contribution. The very fact that the highest band is described in the way it is, which by anybody's standards their primary need must be healthcare, yet you only get £125; and even the £75 band has some difficulties, so unless that gets sorted we are always going to have this problem that you have to be worse in order to get continuing care. Mr Wheatley: We would certainly support the call for a single set of national eligibility criteria within the consistent national approach and better training for professionals involved in the continuing care process. It is clear to us also that people do not get enough clear information about what the process is, what their rights are for reviews, and how the review processes are carried out; but there does also need to be an information strategy for people. There should be better record-keeping, clear requirements for record-keeping so that we do not see the experience of trying to review cases where there are simply no contemporaneous records. A lot of the cases we see are about reviews, so measures to improve timeliness of reviews would also help, and the problem of making decisions binding where people can be dealing with a strategic health authority, a PCT and in some cases the Ombudsman - but in none of these cases is the ultimate decision binding on the person responsible for paying. Ms Williams: I would like to add to the wish-list that we would like to have some independence. The line of questioning in the earlier session was indicating that the fact that money is involved and that the PCT staff are under some pressure and that there is a limited budget as to where this money will come from. The people who are doing the assessment are quite people who are doing the review of their own assessment, and there needs to be a level of independence somewhere. As John said, we have had one case that has gone through numerous reviews at PCT level, gone to the strategic health authority level; and the strategic health authority found in favour of our client, and the PCT will not honour it; and there is nothing anybody can do. Q95 Chairman: You cannot go to the Ombudsman. Ms Williams: We can, but if they decide to go against the Ombudsman it is not binding. They can make recommendations. Even to get to the Ombudsman stage to look at it and get a result, currently it is taking 55 weeks. It will be over another year before that family will know what is happening, so there needs to be a more timely review. We did hear the problems about no records, and that is undoubtedly a problem, but when we have suggested that there must be other medical records around - the health service keep records for seven or eight years, and there must be GP records and incidents when they have had interaction in the hospitals. They will not use them in some instances; they will only use the nursing home records. In many cases in some areas that nursing home no longer exists, and then it just sits on a desk and it is very difficult to get it moved forward. Q96 Chairman: Looking at information back some time, where you cannot get information from the records of the home - either they are not there or they are inadequate - you have difficulty accessing alternative means of working out this person's circumstances. Ms Williams: It is some of the review panels - whether they will accept that evidence; and quite often the carer's evidence is not considered; it is only the written contemporaneous records of the nursing care that was given at that time. Q97 Chairman: They might not accept the GP's records that could affirm the nature of the care that was needed ---- Ms Williams: That is the argument we use to say they should be considering it, but we have to push that. My concern is that we deal with a very few number of the cases. As was pointed out earlier on, a lot of the people who perhaps are not as articulate do not know - and do not all belong to working men's social clubs - that there are schemes available and that they would be entitled to them. Ms Pointon: I would like to suggest that in the criteria a professional is designated whose responsibility it is to tell all families about the existence of continuing care. It is self-funders who get the very thin end of the wedge because they do not have the social worker to their elbow. If you could say it is the GP's responsibility - it is something everybody has got, and the only answer there is a GP; it is their responsibility to tell the family about the existence of continuing care. I went for five years without knowing it existed. If you do not know it exists, then you cannot apply for it. Ms Cream: I think if carers felt they were going to be automatically offered NHS continuing care when the person they were caring for was eligible, it would dramatically change the system. At the moment my overwhelming impression is that they fight tooth and nail to get it, and it is a battle, which creates a very adversarial culture. Q98 Dr Taylor: We heard in the first session that PCT and SHA representatives are working for fair and consistent application of the criteria. Talking first to Age Concern, how do you think the assessment process and the application of it is working? Ms Thompson: You must remember that we only ever get the complaints. I know that there are some people where it has all happened magically, and they do not ring us up to tell us that. Certainly from the calls that we have had, I would say with a huge amount of difficulty. If you ask for continuing care, we find that people are put off right from the very beginning - "oh, nobody gets it in this area; you have to be nearly dead to get it". So right from the start you are working from a system whereby you might find that in that case you will not bother. It is an attitude. I suspect the staff that are working at the higher level are all working very hard to get it even across the board, but then you have lots and lots of front-end staff who may or may not be too aware of changing criteria attitude, so it is a mindset at the moment within the NHS that they are there to deal with acute services, and continuing care is something else really. There is a problem there. We certainly find there are people that come to us who have had an assessment tool and have to meet a number of the criteria at a certain level, and in some cases it seems to be very, very rigidly applied. I think it would be pretty hard for Pamela Coughlan to get continuing NHS care based on some of the criteria we have seen. Q99 Dr Taylor: You have been very fair and said you really only get complaints, but you must have some idea from members and supporters that the system as a whole is working or is full-stop not working. Ms Thompson: I would say it is full-stop not working. Q100 Dr Taylor: Obviously ICAS get the complaints. Ms Williams: We get them across the range, and traditionally Citizens' Advice Bureau have always worked with our colleagues in the rest of the voluntary sector. Prior to us dealing with this, we would always forward people on, so it has been a bit of a steep learning curve. We deal with all the complaints across the NHS. Continuing care is the biggest postcode lottery of them all. You will be aware on this Committee of the problems with cancer care and all the rest of it, but it is nothing to continuing care - it is so different. Every PCT, even though they have got the same strategic health authority criteria, have interpreted it very differently. Every professional on the ground then interpreted that slightly differently, and it is the one area where the public have the least comprehension on how it is working. It is very difficult, especially if a couple may have a parent each who is in need of continuing care, who live literally up the road from each other but come within two different PCT areas, and they cannot understand at all why one will be eligible and the other one who in their minds is more ill and therefore needs more care cannot get it. You cannot explain it. We have been advised by the Ombudsman's office that all the criteria have been checked legally, and all comply with the regulations; and the only way we can challenge the criteria - and we do feel there are some we would like to challenge - is through judicial review. That is very, very difficult and very expensive. If you have spent several years trailing around different review panels and taking days off holiday and hours and hours - and Barbara has taken years to try and achieve it - judicial review is not an option. I do think we need to have a national criteria. Q101 Chairman: Ms Williams, you made the point about postcode lottery. Is that a point that resonates with everybody else. Ms Thompson: Absolutely. Q102 Dr Taylor: You have already said you would agree with Ms Cream's first point on national criteria. Would you also agree national tools and far better training? Ms Williams: Yes, all of those. We would also want some level of independence in the reviews. I really do not think it is right that the people who have made the decision should review that decision. Q103 Dr Taylor: Can I turn to the interface between RNCC and continuing care. You have already said that there is not an interface; they are one and the same thing effectively. Ms Thompson: Effectively. If you look at the criteria for the highest bands you have to have complex predictable needs; you have to need therapeutic interventions over a 24-hour period. How can they describe that as not having a primary health need and only being incidental and ancillary to the accommodation? I think all the time you have to go back to the Coughlan case. Although we were talking earlier about its policy, and policy has shifted, at the end of the day it is the law. There is an Act and there has been case law which establishes this. Unless it reflects that case law, I am severely worried, and I feel that if we go for national criteria we have to be absolutely straight down the line that we are properly reflecting the Coughlan case in the criteria and in the assessment tools. Q104 Dr Taylor: What form should our recommendation take; that we abolish the difference between them - that they are really the same? Ms Thompson: I certainly think that you cannot look at one without the other, so both of them will need to be looked at together. If they are going to keep the system whereby some people have fully-funded care - and a lot of people do not quite realise - they muddle it up with the free personal care. It is so different because fully-funded care in a care home means that if the home costs £700, the NHS pays that £700. If we are looking at having a system whereby some people, because of their primary health needs, should be fully funded, which we agree with because that has always been the case since 1948, you then need to sort out that those people that do not qualify for that full funding but have much lower nursing needs - that there is a separate band for them, but it is very clear that there is some sort of disparity between one and the other, and that they are not so muddled up - that you have to be so bad to get the nursing band and you have to be even worse to get continuing care. Q105 Dr Taylor: So a better definition of the banding would be one answer. Ms Thompson: Yes, one answer. Ms Williams: We see a lot of cases where, regardless of how many toolkits people are given or criteria, the practice still regularly occurs where people do the RNCC banding; and then, because you are not getting the highest level you do not get the continuing care. When we get involved and asked the date of the continuing care assessment, they were all done at the same time by the same people, and because you have not got the highest level of nursing care, which has been explained is very difficult - we had a client who was unfortunately in the very last stages of the Parkinson mask, which means that their condition is very, very stable and they are very, very rigid, so they are not qualified for the highest level of nursing care. The fact that that person has huge nursing care needs means that they do not qualify for the highest level of nursing care because they are not unstable, and therefore that particular client was refused continuing care. When we got involved and started to ask when they started to do the continuing care assessment - luckily it has now been awarded, but why should that family go through all of that because there is this confusion over the nursing care. We do need to stress independence on review. Q106 Dr Naysmith: The recommendation should be that the continuing care assessment should be done first. Ms Williams: Yes. Q107 Dr Naysmith: Why does that not always happen, or does it ever happen that people say, "if we do the continuing care assessment first it will cost us more money than if we do the nursing first"? Does that ever happen, although it was denied in the previous session that it would ever happen? In your experience ----- Ms Williams: It happens daily. As one of them said in the previous session, quite often these will often be done within an acute session, so there will usually be a social worker, possibly an OT or a nurse from that ward, and they will do the assessment and they will do both sets of assessments. In a large hospital setting there will be many, many beds taken, with bed-blocking and all the rest of it, so there is a lot of pressure on the ground for the front-line staff to get this done. Sometimes those two people will make the decision. The doctor's input and other professionals will come in at an after date, but that person has been moved out of that hospital and into a situation where there is no nursing care, and to get them out of the hospital pretty quickly. Q108 Dr Naysmith: Let us be absolutely clear. There would not necessarily be a benefit for the hospital in going for one or another - the money comes from the primary care trust. Presumably, it does not go to the hospital to distribute it, it goes to continuing care; so what would the benefit be for the hospital ----- Ms Williams: I am sorry, I did miss out that quite often there would be a PCT member there, and that that is why it is. Quite often it is the commissioning care manager who will be doing all the reviews. Ms Thompson: We find very frequently that in spite of the fact that there were directions issued last year that the continuing care assessment has to be done first, there is no continuing care assessment done at all. A friend of mine only last week was telling me, "my Mum has got to go into a nursing home next week" - she was in hospital. I said: "Have they done a continuing care assessment?" She looked at me blankly. "Do you know how much nursing bands she is going to get?" Again, she looked at me blankly. So I put down a few questions to her - "you must ask this, this and this before you agree that your Mum can go into a nursing home" and she now has continuing care, but it was only because she showed them the e-mail I had sent her and said, "Should I be asking for continuing care?" The social worker said: "Oh, yes, I think perhaps you might." It would not have been raised otherwise. Ms Pointon: I would say anecdotally that although I asked Malcolm to be assessed against the continuing care criteria twice he was assessed against the RNCC, and so even when you ask for it - I think there is confusion among some of the professionals actually, who do the assessments. Could I say two or three things about the assessment process itself? What has got to me is the notion that one size fits all. Malcolm's assessments took very little account of important features of dementia such as panic attacks, hallucinations, inability to communicate or understand, and the psychological effects of the illness. Unless you ask the right questions, you will not get the right answers in the assessments. I think it is down to the fact that we are using a tick-box mentality to do these assessments. It is my personal view that human-beings are far too complex to be reduced to a system of ticks in boxes and Gestalt psychology told us a long time ago that the whole is greater than the sum of the parts. A more holistic view should be taken of assessments, which are based on what levels of care the person needs rather than who should give it. As a carer, as a receiver of this process, I am strongly of the opinion that the assessments are designed more to discover who should be funding the care rather than the level of care that should be provided to this patient. You talked right at the beginning about the division between social, personal and nursing care; and if only that were abolished, then a lot of this palaver and professional time would be done away with. I have a vision of the future that care is care is care whether you are talking about someone who is unable to dress themselves or about palliative care. If the funding for it were in one bucket that was totally separate from funding from social services and health in other means, first of all it would do away with a lot of these almost positionings that people take around the problem. Secondly, there would be a continuum of care, and when people move from one kind of care to another there would not be this dislocation. Thirdly, the taxpayer - and this is where I make an openly political point - would look more kindly on a hypothecated tax particularly for the sick and the elderly that was going into one holistic budget rather than being pooled budgets. That is just how I feel from where I sit as a lay person. Q109 Chairman: I would not disagree with anything you said. Ms Cream: On the RNCC issue, I think the introduction of the RNCC has focused so much of the debate on what is nursing care as opposed to what is health care, and it has particularly penalised people with dementia because they get very little care from nurses. It has also meant that people in residential care homes - and you might be in a residential care home not because that might be the best setting but it might be the only place that can take you as opposed to a nursing home, but then you do not get any contribution if you are self-funding from the health service. Q110 Dr Taylor: Ms Pointon made a very good point, that the carer is defined by who gives the care. If it is a nurse that gives it, it is nursing care; and if the same care is given by anybody else it is not. That is a very good point. Ms Thompson: I think the Ombudsman's case in relation to Ms Pointon's case, where she said it does not matter who gives the care - if it is healthcare it is healthcare - is such an important point. Q111 Mr Burns: Ms Thompson, we have heard concerns that if a self-funding resident in a care home becomes eligible for continuing care, the home may face a drop in the fees that are paid, and the resident may then have to move to a less expensive home with all the disruption and whatever; or be faced with a requirement to top up the NHS contribution to their care costs. Do you have any evidence of such situations, and what advice would you give us as to how we can address the problem? Ms Thompson: We have had people who were told - because there is no choice of accommodation in the NHS in the same way as there is in the social services clients - when they were first thinking about asking whether or not they should get full funding, that they will not be able to stay in the same home. That, I find, really worrying because it meant that some people were still paying for their care who could probably well be being fully funded who have to decide that because of this risk of them having to move they will not apply for it. I have had cases where the person has been found to be needing full funding, and the particular home was more expensive than the NHS was prepared to pay. In some cases, it has been juggled around, whereby the care home has said "these are the fees for your care and these are extras"; but I worry about that because that means that care homes could just carry on adding on to the extras and adding on to the extras and adding on to the extras. We have a real problem with local authority residents and topping-up at the moment and I do not want to see that replicated in the NHS. It is the whole business of funding care homes at the moment, and we have concerns that self-funders are subsidising local authority-funded residents. I can understand that the NHS does not probably want to pay the self-funding rate if they think that is because they are having to subsidise the local authority. It is a real issue that needs to be addressed across the board. What actually is the NHS paying for? I have even heard some time ago that in one area the NHS was not prepared to pay more than social services were prepared to pay for the nursing care. I cannot see how you can have an NHS where, by the very nature of the type of person that they are prepared to fund, i.e., the illest, is not prepared to say "we will have to fund more than local authorities"; so I suspect care homes are very happy if a local authority-funded resident who is paying the local authority rate comes under the NHS because they should get more money. I do not think there is any incentive on care homes where the person is self-funding and they are getting more than the NHS would be prepared to pay. I am quite sure that homes must think, "if I put in for self-funding we are not going to get as much money for that person". At the moment, as I say, the NHS either pays all or nothing, so we have been informed by the Department of Health. Therefore it becomes really difficult in those situations. I would be very reluctant to say "let us go down the third-party top-up route" because we have already had problems with that. I think it needs to be very carefully worked out with the care homes what exactly the NHS is funding and what they are prepared to pay, and they should be prepared to pay what is needed. When you think of the cost of a hospital bed, I cannot imagine that too many care homes are charging vastly above that, and most of them will be charging considerably under that; so even if it is quite an expensive home, the chances are that it will still be cheaper than having somebody in hospital. Q112 Mr Burns: Ms Cream, it is estimated that up to 60 per cent of care home residents suffer from some form of dementia. Ms Cream: It is 75 per cent. Q113 Mr Burns: Thank you. The question is still relevant. We have been told that the current system for determining eligibility for fully-funded NHS care discriminates against people with mental health conditions, and in particular with dementia. What needs to be done to ensure fairness and appropriate inclusion of those who suffer from dementia? Ms Cream: One of the reasons why we were so pleased that Barbara Pointon won her case when she went to the Ombudsman was because it recognised that the assessment tools in many areas do not incorporate psychological and mental health needs adequately and so the assessment tools need to be revised. Even most nurses have very little training in dementia so they are not able to recognise mental health needs in that group. Improving that understanding would be extremely helpful and make a big difference. Barbara can give practical examples of how it is done. The other criteria that we are really concerned about is the one around "stable and predictable". It is probably the one that we get most feedback on, and anger from carers. If you have Alzheimer's you are going to get worse and you are going to decline, and ultimately you are going to be in the palliative stage of dementia. Our experience and feedback from people is that as you decline you are less likely to be eligible for continuing care, which is not what you expect. If you are sitting very passively or lying in a bed, you are perceived to be easier to care for. We do not agree with that; we think you need much more intensive support to help you have a good quality of life. We have had people go to the Ombudsman who have come off continuing care. The other area that is very difficult is in the terminal phase. You are eligible if you are in a terminal phase of a condition and it is a very short period. When you have dementia, it is very difficult to say when that period starts, but also it may last for a very long time, but your needs are the same. If you are getting good care at home from your family members, your relatives, you are almost penalised and you are not getting the support from a nurse. We have people who say, "I am looking after my mother; she is doubly incontinent, cannot communicate; she is in a bed and needs a hoist and has swallowing difficulties" and they are told, "your care is not healthcare; it is just social care" or "it is not a primary health need" or "your mother is not ill enough". Those are very, very common complaints. Q114 Mr Burns: Ms Thompson, can you just clear something up for me because there seems to be some confusion and you might be the best qualified to answer. We know that in Scotland there is greater across-the-board provision for long-term care for citizens, and it tends to go under the generalised term "free long-term care" in Scotland. You see in this country people calling for free long-term care based very much on the Scottish example. Does that mean total free long-term care so that if my mother were to go into a residential home then there would be total free care for her; or is it only parts of the care and the package that is actually free, and the individual or the individual's family, still subject to assessment, has to pay some money out? Ms Thompson: That is why I said at the beginning it is very different, what is the personal care and what is the continuing care. In Scotland at the moment if you are in a nursing home you get £210 a week and if you are in a residential care home you get £145 a week. But you have still got the rest of the hotel costs to pay for. That is the big difference. It is interesting because since they introduced free personal care into Scotland, those figures have not gone up, and it was introduced in 2002. By the very nature of the way care home prices are going up - in fact it was interesting because at the time when the free personal care came in in Scotland, there was a long ongoing dispute between COSLA and the various care home organisations, and they re-negotiated the fee levels and the fees went up by quite a lot; but although the total fees went up, the amounts put into the free personal care and additional to the nursing care did not go up accordingly. That is why I think there is a real problem about - does more and more become the hotel costs and less and less becomes free personal care? It is quite a difficult system. If you are talking about free personal care, you are talking about the person meeting their hotel costs; but I do not know whether you would look at a set hotel cost that everybody would pay and nothing more, and then whatever is above that must be personal care. We have started with looking at the total costs of the home and you lop off a bit for personal care and a bit for nursing care, and whatever is left the person has to pay. If you are in a care home that costs £700 a week, getting £210 personal care still means that you are paying an awful lot for the hotel costs. Q115 Jim Dowd: What is the average cost for a resident in a nursing home or care home in Scotland - what proportion is provided of the bill from the personal care ----- Ms Thompson: Obviously, care homes do vary a lot in Scotland as well, but I think probably about £400. This is off the top of my head, and I can get some figures for you if you want. You are still probably talking about over half being for the hotel costs. As well you have to remember in Scotland that they do not get the attendance allowance, whereas self-funders in England get attendance allowance. In England you could get £125 worth of nursing plus about £60 of attendance allowance; whereas in Scotland you get £210 through personal care but you do not get £60, so you get less in Scotland than you do in England at the moment. Chairman: It is not as clear as people think. Q116 Jim Dowd: So they are only £25 better off. Ms Thompson: Some of them are worse off. You have to be very careful about this terminology. Q117 Mr Burns: There is a lot of confusion in this country, and I think over the next six weeks I think there will be even more confusion and I would like to have it clarified and on the record. Do you think - and this does not necessarily reflect my view - that there should be a hotel cost component within continuing care? Ms Thompson: I think it would be very difficult to introduce because obviously we have the free NHS, and if your primary health needs are health needs it is a difficult thing. People already feel that by stealth the Health Service has withdrawn considerably. You have only got to look at the number of beds that have been lost over the last 30/40 years. People who would have been looked after in a hospital now are not being looked after in hospitals. Q118 Mr Burns: That raises another point that has just occurred to me. Do you remember about four years ago, rightly a decision was taken to introduce free nursing care, because logically the Health Service should have been picking up this bill years ago? Ms Thompson: Yes, 2001. Q119 Mr Burns: Were you then as confused and surprised as I was by October of 2001, when one discovered that it was not going to be what we understood was free nursing care, but actually bands that restricted the amount of money? Did you always expect that? Ms Thompson: No, I did not always expect that. I was certainly involved in the discussions, and at the time we were saying it ought to be one band - the difference between what residential care costs and what nursing home care costs - but we were told that that could not happen, which is why they ended up with the banding system. Obviously, they have got bands in Wales and in Northern Ireland. I am not saying that the amounts they pay are adequate there either. The bands have stayed pretty much the same and have not gone up by very much, and they are remarkably low. When you think of the type of people who are in nursing homes, we were very surprised how low the figures were, and looking at what they were expecting nursing homes to do - to meet someone's complex, 24-hour nursing needs, the home is given £125 for that. The other thing that really did come as a very nasty shock to everybody was in 2001 when the people who were self-funding got the so-called free nursing care, which is not called that now - it is now called the NHS Contribution - and all that happened was that the homes put their price up by whatever. We still get letters about that. People are so, so angry about that. It really has not made a lot of difference. Q120 Dr Naysmith: Is there anything we can do about that? I have written to the Minister on a number of occasions when people have said that this should not be happening and this is disgraceful but nothing happens. Ms Thompson: We certainly took it up with the Minister at the time. We were told that because they were self-funders it is a contracts issue. Somebody has already said that self-funders really get the raw end of the deal here, and I would say that is very much the case because they have to negotiate their own contract. Although there has now been slightly more clarity brought into the care home contracts whereby they have to say which is nursing and what is personal care and what is the hotel cost ----- Q121 Dr Naysmith: That is statutory now, is it not? Ms Thompson: Yes, but we still find that it does not always happen. Q122 Dr Naysmith: When did that come in? Ms Thompson: It came in in July or June of last year. I can check that. People are still finding - in one of the case studies I mentioned in our response, the person who went to find his wife was actually in an ambulance waiting to go into a care home - he had not decided which are home she was going to go into, by the way, and he was told by the care home that the fee would be £450 a week. Then when eventually her £125 was paid, the fees went up by about £125; so ----- Q123 Dr Naysmith: That is exactly what happened. That is what I am getting at. That happens quite a lot. Ms Thompson: Yes. We still get a lot of letters about that. Q124 Jim Dowd: It has happened, past tense, because it was when it was introduced, was it not, that everything just simply moved up by a large margin? Ms Thompson: It is still not made all that clear to individuals, whether or not the fee that they are charging includes what the nursing contribution is going to be, or whether it does not include it. Q125 Dr Naysmith: I am talking about the situation where somebody comes out of hospital and negotiates a fee for a nursing home, and then later their assessment comes through saying there is so much money for it, and the nursing home just takes the money. Ms Thompson: Which is why it is so important that the assessment is done when they are in hospital so they know how much they are going to get and what band, and whether or not they are going to get continuing care. In the case that we quote, the person went into a care home on 28 September; they only wrote on 21 September to say, "you need to do an assessment for continuing care" and every one of the assessments was signed off after the person had gone into the care home, and some of them were signed off in November. This is one of the big problems that you have with access, knowing whether you are going to get continuing care before you go into the care home - and the care homes need to know as well because they should be better funded for people who need continuing care. Q126 Dr Naysmith: This was covered very well in the previous session, retrospective review and all the problems with it, and a couple of you in evidence have said there were problems, but do you think it was covered, because most of you heard it in the previous session? Is there anything you would like to add? Ms Williams: You were asking whether this is the full amount they should have been offered. We certainly advised a couple of families to seek more money, and they decided not to because it had just been so traumatic. This week, when I knew I was coming here, I rang round the Bureau quickly, to find out what was happening very recently. One of the clients in Cheshire has just settled for £16,000, and we feel it should be considerably more money than that. The son said, "My Dad had started the process whilst he was alive", and they felt they had won the token that Dad was right. They had got £16,000 and they just cannot be bothered facing any more of it - and this has taken five years. Ms Thompson: I would have some real concerns about the robustness with which some strategic health authorities have trawled. When you are trying to talk numbers and how to reflect it, it is really difficult to do that, because if you do not do much to find out who is out there you might end up only getting the really obvious cases coming your way. If you do an awful lot and get lots of other people, then the percentage of cases that get continuing care might be much lower. Certainly people in residential care homes and people at home have probably missed out because there is nobody who is really responsible for making sure and keeping a weather eye on whether or not they now fall into continuing care criteria. Q127 Chairman: Going into working men's clubs seems the best way! Ms Thompson: Yes, but not everybody goes there. Mr Wheatley: The process is long-winded and very painful for people. A lot of the work that is going on in the ICAS bureau is detailed casework and complex over years. There are review stages and complaint stages to the process, and there is lots of batting backwards and forwards between primary care trusts and strategic health authorities. Trusts are not bound to follow the outcome of reviews. There is a bit of confusion over which cases go to the Health Commission and which cases ought to go to the Ombudsman. There is a poor evidential base for doing the reviews and lack of clarity about what is admissible, and poor decision-making right the way through. I think we are talking about a process that it is difficult for health professionals to understand; but it is almost impossible to explain to people what the basis for review is; and any policy grounded on those difficult foundations is bound to fail. Ms Pointon: From the point of view of the carer, fishing out all the paperwork for retrospective review, which I had to do going back seven years - I am a squirrel and I found it all, but it took me hours and hours and hours to get it into order to present the case to the panel. Full-time carers, 24/7 carers, just do not have the energy or sometimes they just do not want to have anything to do with this. What about all those who have got nobody to shout for them and get it all out? Why I am talking about this is because I want to stress two things about people who are being cared for at home. One is the importance of partnership with the family carer. We are the people who see most of the patient and know their needs intimately, and I still cannot understand why when social services assess the carer of someone with dementia goes through the assessment and you sign it, that it is an accurate picture. I found the health assessments that were done of my husband - one of them had 14 major inaccuracies in it because I had not seen the assessment before it was sent in to the panel, which then decided that Malcolm's care was social; but missing from the assessment was the fact that he had frequent fits, so how could his care be stable? The other thing about care at home is that in the criteria please can you make sure that respite is part of the package? Without proper respite the carer is going to go down, and when the carer goes down the whole ship goes down with them and they become a bigger burden. I know people on the whole are not being cared for at home, but in the future they will have to be because of the burgeoning elderly population, and there will not be the care home places available. So please keep the care at home focused in the criteria. Mr Bradley: I wanted to pick up on the figures you are giving on the comparison between Scotland and England in terms of home costs and contributions, and if you could send us a note on that it would be very helpful. Chairman: Thank you all for an excellent session. We are most grateful to you, particularly you Ms Pointon; it has been very helpful having you here. Witnesses: Mr John Pye, Continuing Care Nurse, Royal College of Nursing Member, Mr Martin Green, Chief Executive, English Community Care Association, Dr Jackie Morris, Deputy Chair, Policy committee, British Geriatrics Society, and Ms Jo Peck, Head of Nursing and Clinical Governance, Medicine Division, University Hospital Lewisham NHS Trust, examined. Q128 Chairman: Welcome to our last group of witnesses. We will not keep you too long. Will you briefly introduce yourselves to the Committee? Mr Pye: My name is John Pye, I am presently employed as Head of the Commission for Continuing Healthcare for Cheshire and I am here representing the Royal College of Nurses. Ms Peck: I am Jo Peck, Head of Nursing for Medicine at Lewisham NHS Trust. Dr Morris: I am Dr Jackie Morris and I am representing the British Geriatric Society. I am a jobbing consultant geriatrician, and deputy chairman of the policy group at the British Geriatric Society. Mr Green: I am Martin Green, Chief Executive of the English Community Care Association, and a trustee of Age Concern England. Q129 Chairman: Can you say a little bit about the Association, Mr Green? Mr Green: We are the largest represented body for the community care sector in England and we have about 2000 residential homes, which represent about 110,000 beds in membership. Our membership goes right across the board, so we have charitable and voluntary sector providers; we have large corporates and we have quite a lot of individual small home-owners. Q130 Chairman: Would you include members of the National Care Homes Association, or would they be separately organised from you? Mr Green: That is a separate organisation, although we do have some cross-over members and some people are members of several umbrella bodies. Q131 Chairman: Can I thank you all for contributing to our inquiry, and for your evidence we are most grateful. Mr Pye, I recall, going back some years, when community care arrangements evolved from 1981 where people could go into care or nursing homes and get a top-up from the DSS system towards the cost. The argument was that that incentivised people to enter institutional care who frequently did not need to be in there, because it was easier to get care in a home than support and care to remain in your own home from the state. In your evidence you state that the registered nursing care contribution framework rewards dependency and fails to provide any incentives for recovery or rehabilitation. How do you think this perverse incentive might be tackled? Mr Pye: I think it is a perverse incentive, and I like yourself, Chairman, have been around the Health Service a long time, and I was party in the early 80s and 1990s when community care came out. When the RNCC first came into being it laid down what we believe was perversity in that we reward people's dependency rather than their potential to improve. If I may, Chairman, I will give you an example of that in my local area. We have a number of patients who we have assessed using the RNCC and those assessments were made on the wards in hospitals and were high bands. We placed them into our local nearby nursing homes where they have very good care, and their dementia has been treated accordingly. They are now improving substantially, and we have now gone in and re-banded those patients and given less finance to the nursing home to look after them, which has a massive detrimental effect both upon the individuals themselves potentially but also on the business of the nursing home to try and maintain the same level of standards which they wish to have. That is the main issue as far as I am concerned. With the policy we now have, we have no alternative but to use it as a perverse system; that if people do offer over and above what people generally get, and people do improve and rehabilitate, we go in there and disinvest and remove the awards that we have made to the homes. Q132 Chairman: The whole system basically is working against rehabilitation and helping people, moving them towards independence in some respects. Mr Pye: Absolutely, and like a lot of initiatives that have come out quite recently it is a reaction to an issue and a problem. The reaction to the long-term commissions report was, "we will fund nursing care". That was patently obviously not going to happen, and we are now not funding nursing care, we are funding a proportion of nursing care. That came along as a reaction to the long-term commission. It also did not take into account the policy we already had in place for continuing health care, and the two sides have never married up. I was listening to previous speakers about the combinations and the relationship between the RNCC and continuing healthcare. It was never thought about when RNCC came out, and we have ended up with two policies and two procedures matching in everything including the words, which places a great difficulty on us within the nursing sector and certainly within PCTs in trying to disseminate and make decisions on who funds and who does not. Q133 Chairman: You have argued that the changes to continuing healthcare criteria will not resolve wider problems of access to healthcare "unless there is a far greater agreement about what constitutes health care and what constitutes nursing care". That is at the heart of what we have been talking about all morning. What do you mean by this? What do you feel are the implications for patients who practise and how might we resolve the issue? Mr Pye: I was kind of hoping that was your first question this morning, Chairman, to see if we could identify what was health and what was social care. I have been in the Health Service 37 years and I am no closer to finding the answers to what is health and social care. That is a perversity we have in dealing with probably our most dependent population. These people require continuing care. Whether it is continuing healthcare or continuing social care is a bit of a red herring really. These are individuals who previously would have been in a long-stay hospital under the guidance and supervision of doctors, consultants and specialist staff. We no longer have that provision for them. We put them into the independent sector, and very good as it is, it detaches them from the National Health Service, and that is inherently what we have got. We have our most dependent individuals in the care of non-NHS staff, with little or relatively small amounts of support and guidance given to those individuals. You suggested we move the demarcation line between health and social care, and I think we need to do that. We need to look at people holistically and see what their needs and care needs are. Q134 Chairman: You also need to have a holistic professional, and the more I stick around in this area, the more I think the future professional roles will be markedly different from what we have now probably. Doug Naysmith and I have been serving on a committee evaluating the Draft Mental Health Bill, and of course the proposal in that Bill is to move away from the approved social worker role in sectioning people to the approved mental health professional because there is a recognition of people working much more closely together, and in a sense we are moving towards one professional. Do you see that as a means of responding to some of the demarcation problems we have got over and above the funding issues, but the actual practice of people. What is your view as to what that future professional might be? Mr Pye: That is crucial too. It has happened over a long period of time. I was a community nurse in Liverpool way back in the 80s and 90s where we did merge the carers, the health and social care staff, because we had those disputes about who gives eye drops, who washes hair and their feet, and all those issues. We created a generic worker at that time, and they are spread round the National Health Service, the social services now anyway, particularly around the elderly. The only way forward is to come together and provide a generic workforce for the elderly with the specialist people involved in their care as well. Continuing health care gives an opportunity now towards the creation of that. Q135 Dr Taylor: Can we explore definitions a little further, and it is really the definition of "nursing care". We have heard from our previous group that if a nurse gives it, it is nursing care, and if somebody else gives the same care, it is not. How should we be recommending that this is altered, if it is altered, when it is used for the determination of registered nursing care contribution? Mr Pye: It is crucial we understand what we mean by "nursing care". As a couple of previous speakers clearly said, they provide quite a high level of nursing care to their loved ones and their families and friends. The vast majority of their care is provided by the mother and father. They carry out tracheostomy changes; they carry out ventilatory procedures on their own children. It does not stop becoming a nursing task simply because the carers do it, but they do so under the guidance, supervision and training of the qualified nurses. It does not stop becoming a nursing task. The 2001 definitions of nursing care included those tasks delegated and supervised by nurses; however, when it comes to the funding issues around that care it ceases to be. The continuing health care and the RNCC clearly specify it is the work carried out by registered nurses. If you are not a registered nurse, you cannot carry out nursing care. Q136 Dr Taylor: So we do come down to what our previous witnesses said; that if it is carried out by a nurse, it is nursing care. Mr Pye: Yes. If it ----- Q137 Dr Taylor: If it is the same duties carried out by a care assistant or a carer, completely unqualified, it is not. Mr Pye: Sure. I guess all care provided by a nurse does not necessarily need to be nursing care. Q138 Dr Taylor: Any help from the British Geriatric Society? Dr Morris: I have always had a problem with this. I was at a meeting talking about dementia and the needs of older people with dementia the other day, and we have major concerns that the most frail older people are given over to the care of the least trained and the least qualified to deliver that care. If you were talking about people with cancer, we would not be saying this was acceptable, and I think there is a perverse incentive to give people the cheapest care and the most untrained care. That is not saying that in some circumstances it is not very good, and I have spent lots of time visiting and supporting care homes, and they deliver amazing care and often in a much better environment than the traditional long-stay hospitals. However, I think we have thrown the baby out with the bath water. We have documented in our statement that we think it is the responsibility of the NHS to earmark and dedicate a specifically trained group of staff of specialists to support this vulnerable group of people. As has already been expressed so frequently this morning, it is very difficult to tell who is NHS continuing care and who is not. Older people in nursing homes and care homes are very major users - and this has not been said - of the acute sector, because often their health needs have not been identified early enough and sorted out early enough; so this is a problem. The other thing is that the British Geriatric Society would like you to appreciate what is a comprehensive geriatric assessment. I have been looking up to make sure that I have the right terms, but it is very important for everybody to appreciate that there needs to be a co‑ordinated approach to an older person, where a team of professionals assess an older person's health, medical, emotional, cognitive and functional needs, to identify reversible problems, to review their medication and allow that patient and individual to achieve their maximum potential. This process has been proven to work. It does not necessarily reduce mortality but it reduces institutionalisation and improves outcomes. We think it is very important that specialists are involved in this process. Often in hospital, the assessment process leading to continuing care or nursing home care does not necessarily involve a specialist geriatrician. As has been described, there are major problems with how assessment prior to placement and continuing care is done, and poor documentation. We believe the system should very much involve the patient and the carer and that there should be good documentation. We also think that you cannot just do one comprehensive assessment; that assessment and review - there needs to be a dynamic process. You need to assess people, and then if the decision is made - and you need to make sure they have achieved their maximum goals and potential - you need to take into account the complexity of their needs and the relationship between disease, impairment disability and handicap. I hope I am being clear. Q139 Chairman: You presumably accept the point that Mr Pye made, that your assessment process could have a detrimental effect on the funding circumstances of the individual patients. Dr Morris: Yes. Q140 Chairman: Have you experienced that? Dr Morris: There is a perverse incentive to discharge people before they have reached their maximum potential. I have always practised health care such that I would like each individual to really achieve their maximum potential, and that is our ethos. On the other hand, if you are short of beds and there is a flu crisis and there are queues in the medical admissions unit and A&E departments, you might want to precipitate the early discharge of somebody who is not fit for discharge. Q141 Dr Naysmith: I would have thought very small numbers of people get the proper geriatric assessment that you are talking about. Dr Morris: I would like to put this question back to you. I think that we need to know. We do not know. I would suggest that we need to ask you to audit how comprehensive geriatric assessments are carried out in this country, because it is a very difficult thing for us to do but it could be part of the national framework. Q142 Dr Naysmith: You are saying that this should happen, and it should not just happen when people are going for assessment for care; it should maybe happen regularly by general practitioners who can identify people who are ready for a geriatric assessment. Dr Morris: Yes. It should be a dynamic ----- Dr Naysmith: So given the number, it would require a huge increase in the number of geriatricians before it could even become feasible. Q143 Dr Taylor: Is it not the comprehensive geriatric assessment part of the single assessment process? Dr Morris: It is supposed to be. Q144 Dr Taylor: You are saying it just does not happen. Dr Morris: It does in some places and does not - it is a postcode lottery. Q145 Dr Naysmith: We were told in an earlier session there would be a social worker there, a nurse and someone from the PCT. Dr Morris: Yes. In areas I have been in touch with recently, some people have panels involving a clinician, which review the paperwork. Some people do not have panels. So even in small areas of London and outside there is a tremendous variation in how this is performed. The other thing is that we welcome the national service framework for long-term conditions, but we would suggest that there is a need for a case management process. Geriatricians cannot do it all, as you said, but we need a case management system to work with the nurses and the primary care trusts, to set up a system whereby vulnerable older people can be tracked through, to identify reversible problems, to make sure they can access acute care when appropriate and access rehabilitation when appropriate, and for their medications to be reviewed. Mr Green: Dr Morris has mentioned lots of issues which certainly from the independent sector I want to pick up on. She mentioned the way in which assessment was carried out, and particularly that there were other factors around assessment, and often they were about whether or not there was a crisis in beds rather than whether there was patient need. I also think there are some really big issues about the continuation of medical support when people are discharged to either a nursing home or a care home. Actually, the ability for that care home and those medical staff and care staff to be able to function appropriately is often about having a clear understanding of what the medical need is and also some ongoing supervision of the case, because as Dr Morris said, cases change and people rehabilitate; they develop and change in terms of their dependency. We need a better interface between the acute services and those in the nursing home services so that people can be really clear that actually we are all about a resource that is there for the patient need. That is one of the things we have lost. When people get discharged from the acute sector, the Health Service often, particularly when they go into a care home or nursing home, think, "that is our job finished". Actually, it should be about continuation of care for the patient right across the board. The other thing I wanted to pick up on was something Mrs Pointon said. The definer of whether or not it is medical care or whether it is a social care should not be who delivers it; you do not need to have a nursing qualification, but you need some ongoing support from somebody who might have a nursing qualification. There are moves towards that, and our colleague from the RCNN said that, in some other areas of care, for example in children's care. You have a situation where people are doing quite high-level medical interventions but they are doing them because they are being well supported by their community clinician. That does not happen so much when people are in residential care, and we need a clearer interface between the role of the acute services, the role of the community services and the role of residential services. We need to have that much more clearly defined, and we also need to look at how that impacts on commissioning. We talk a lot about the outcomes and about patient need. We do not see a lot of intelligent commissioning, the commissions for outcomes. In terms of the way in which we need to have commissioning, it needs to be really focused on outcomes. We need to make sure the incentives are about enhancing people's independence. So a lot of that good work that goes on in the residential sector, either nursing homes or care homes, that rehabilitate people and give them more independence at the moment is not validated. Often that is because people commission a process of care based on current medical position rather than saying "actually the medical assessment says the potential of the patient is X, and if we commission intelligently and flexibly, if we get to a point where they are increased in independence, we need to have incentives in the system to secure that". Q146 Chairman: The incentives are completely against that from what we have been told. Mr Green: Absolutely they are. Q147 Chairman: It is ridiculous. Mr Green: Absolutely, because the incentive is to keep the patient at the higher dependency level. The other issue is that often there are not proper re-assessments. Yearly re-assessments in cases of people who are very frail are not adequate, because they change in their conditions. Q148 Mr Bradley: You mentioned the tripartite relationship between the acute, the community and the nursing home or potential home. In my experience, taking physiotherapy, if you are prepared to take the person back to the hospital they might get a physiotherapy service. Relying on the community to come into the home to do that same thing is extremely limited and patchy, and unless you do that, then that rehabilitation stops the moment they come out of the acute setting. Mr Green: Absolutely. We need to analyse whether or not those are structural impediments based on the way in which services work at the moment or whether the structural impediments are because of workforce issues and lack of trained personnel. I think it would be useful to unpick those issues for the long-term planning approach. Too often we might say that we need to change the structure, but underlying where the structure is are some issues about long-term planning and workforce planning particularly. If your Committee does anything, it could also highlight some of those long-term planning issues as well as some of the "where we are now" issues and "where we would like to be issues". Dr Morris: We emphasised in our report that in a recent national study published in 2001, they found that charges were made in 30 per cent of homes for physiotherapy and 39 per cent of homes for speech and language therapy, so there is a problem around people accessing appropriate therapy. Our recommendations in the Royal College of Physicians, whom we are also representing, in a report we did in 2000 was that we would suggest the introduction of a more multi-disciplinary approach should be facilitated across the board in homes to support case managers. As well as that, I think you need a clinical governance system, and I would support your suggestion, which looks at outcomes, including death and mortality. I would be very interested to know whether there is any information about outcomes from the continuing care panels about what happens to people, about death rates, readmission to hospital and so on, about the panels around the country and the regional variations. That would be very interesting and would help us. Q149 Dr Taylor: Can I go back to the assessment of the patient in hospital for NHS continuing care, particularly going to Ms Peck, to tie it down and give us the detail. Who does it? What are their job titles at the moment, when you are putting somebody through this assessment? Ms Peck: It is still in the multi-disciplinary approach certainly in our trust. On that team would be a nurse from the ward, who has obviously been caring for the patient; and they would contribute to the nursing side of the assessment. Q150 Dr Taylor: Would that be a fairly senior nurse on the ward? Ms Peck: It could be anybody. We try and get somebody who knows the patient the best, because obviously then they can go for the most detailed report. When the case goes to the panel - and we have a panel in our patch - the quality of the assessment is vital. Often a lot of cases get deferred at the panel stage because the quality of the assessment is not good enough. Q151 Dr Taylor: So it would be a staff nurse or a sister, if you still call them that. Ms Peck: Yes, we do - just. Then there would be, depending on the patient, physiotherapy, occupational therapy assessment, depending on what the diagnosis of the patient is. Q152 Dr Taylor: So nurse, OT and/or physio. Ms Peck: Then somebody from social services obviously to look at the current home situation of the patient, and then a doctor would also give their assessment. Q153 Dr Taylor: Who would the doctor be if not necessarily a geriatrician? Ms Peck: It would be a physician, so a medical consultant. Q154 Dr Taylor: Is that good enough? Dr Morris: I would question, is it always the consultant? I would wonder whether the consultant may designate it to a more junior member of staff. Having sat on panels for many years, the people who filled the forms in was variable. I think to be fair it would often be the registrar. Q155 Dr Naysmith: Just as it is the registrar or senior houseman who sees patients at a clinic. Dr Morris: Yes. Q156 Dr Naysmith: Lots of people think they are seeing a consultant but in fact they are not. It is the same thing. Dr Morris: Yes. Q157 Dr Taylor: Should one of our recommendations be that it should be at consultant level? Dr Morris: I would think - consultant level filling the form in - as a consultant geriatrician filling the form in? Q158 Dr Taylor: It is more and more likely to be because there are not enough juniors about now, are there? Ms Peck: We normally have a consultant that signs the form, but whether the consultant physically filled in the form - they would normally sign it so their signature is on the form. Q159 Jim Dowd: Would that not serve simply to slow the whole process down? Dr Morris: I should not think so. Mr Green: My issue here is not about who signs the form and what their particular medical status is; it is about clarifying what is on the form and how much inquisition has been gone into in terms of whether or not the patient's needs have been taken account of. I would not want to go down the road of necessarily saying it has to be a consultant. It has to be somebody who has gone through a process, and that again raises the issue about clarity and standardisation in the assessment process. We need to have that so that if you had somebody who is appropriately trained, who knew the patient and understood what we were trying to get at from the assessment, then it would not matter whether they were a consultant. I do not try to do Dr Morris out of a job, but it is just about being clear. Q160 Dr Taylor: So we have the participants. Who actually makes the decision about the health and social care components? How is that decision arrived at? Who makes it? Ms Peck: At Lewisham it is made at a panel meeting, and the panel is made up of members from the PCT, social care and health and the acute trust; and they ratify. Q161 Dr Taylor: The multi-disciplinary team that has done the assessment would then report to this panel. Ms Peck: Yes, they submit the paperwork and then the panel make the decision about where the most appropriate destination for the patient would be. Q162 Chairman: Is this a panel similar to the one we had described to us in the earlier session? Ms Peck: I assume so, yes. Q163 Dr Taylor: Has the introduction of the single assessment process made any difference? Ms Peck: No, because we are not using the single assessment process across the board yet. Actually, we have just had a case that went to panel this week in Lewisham that had the single assessment, and it was deferred because the assessment was not deemed appropriate; so they have now got to go back and re-assess under continuing care. Q164 Dr Taylor: Turning to the registered nursing care contribution, is assessment for this viewed as a sort of ladder, that you start at the lowest and work up; or do you start at the top and work down? How does it work? Ms Peck: I am not sure. Mr Pye: I do not think it is either/or; I think it is based upon the information provided to the nurse undertaking the RNCC, who looks at the criteria within each band. Q165 Dr Taylor: Would you agree with previous witnesses that there is very little distinction between the highest band and continuing care? Mr Pye: The wording is the same - "complexity; intensity" - they are both within the high band of continuing healthcare. Again, it is down to interpretation. Q166 Dr Taylor: Is there a space for a very closely defined group in between those, or do you think the merge is so inevitable that they ought to be regarded as one? Mr Pye: I think they practically are one. There are some real difficulties in identifying a difference between the two. Again, it is down to local interpretation at a specific time. Q167 Dr Taylor: Would that go for all of you? Mr Green: I certainly do not think there is much difference between the two, and I think it is down to interpretation. I think there are lots of other factors that come into play here which are not mentioned, which are sometimes about the amounts of people you have at any particular time needing that particular resource. Nobody comes out and says that but that is the reality. Dr Morris: No, the reality is that colleagues of mine have said, "we are keeping this patient in because we think they need hospital care and we are not putting them up to the panel, and they are very frail and very vulnerable and we think they need to be in hospital". They have not gone through any panel; the consultant has made a decision that that individual needs a lot of care. Another consultant however might say, "I am sorry, we have got to have the beds, and put them up before the continuing care panel." Q168 Dr Taylor: There is a limitation on resources available outside. Dr Morris: Yes. Q169 Jim Dowd: On assessment, do you talk to the relatives? Ms Peck: Yes. They are involved in that process, almost from the very beginning. Q170 Jim Dowd: They are involved when you said four people together, making reference to a panel. At which stage are they involved? Ms Peck: They are certainly very involved with the social services component of it, and they will contribute to the nursing. Q171 Jim Dowd: But are they actually present when the meeting takes place, making the decisions? Ms Peck: No, because each individual does their assessment on their own, and the form is completed but each person fills in their relevant bit. Sometimes it will be done at the team meeting, or elements of the form, but sometimes it will be filled in by separate individuals on separate occasions. Q172 Jim Dowd: Do the relatives see the report before it goes to the panel? Ms Peck: Not normally, no, not in acute trust. Mr Pye: It is worth saying, Chairman, that the panels do not operate in every area. Q173 Chairman: I picked that up from Mr Hill because I had a good idea it did not happen in my area. I had never heard of it. Mr Pye: No, they do not have panels; they have individuals who make decisions. Q174 Chairman: Does it in your area? Mr Pye: We do not have panels in Cheshire. Q175 Chairman: Is it a north/south kind of thing because we get the picture that they seem common in London. Dr Morris: It is not common in all areas. Q176 Jim Dowd: Lewisham, which I know very well, is a relatively small DGA, about 450 beds. On average how many assessments are you doing in a month? Ms Peck: The panel normally hears between six and ten cases each time it meets, and it meets twice a week, on a Monday and a Thursday, but that is not just patients in Lewisham Hospital; that is patients already in care homes or patients in mental health trusts, or patients who are in hospitals outside the borough but are Lewisham residents. Q177 Jim Dowd: So it is about 20 a week, or up to 20 a week. Ms Peck: Yes, up to 20 a week. Q178 Dr Naysmith: Mr Green, is there any evidence that when a home takes residents from more than one primary care trust area there is likely to be an inconsistency of assessment? Mr Green: Very definitely. It is very interesting when we talk about things like assessment processes, which are supposed to be based on individual need, and then we see block contracting from local authorities and health trusts about the delivery of a service. If you were thinking about this in relation to individual needs and you were going through an assessment process which said a person has given needs, you would then look at your resource package appropriate to those needs and a placement appropriate to those needs. So there is great variability in the system, and certainly in relation to how the individual interpretation happens in different places. That is where we have not got much standardisation, and in fact we have postcode lotteries coming in through the back door. Q179 Dr Naysmith: That must give rise to problems where you have some patients in some of your members' care homes, where some people are being well funded and others hardly being funded at all, but with the same needs. Mr Green: Absolutely. As the demographics change, and particularly as there are more people with very high dependencies because of Alzheimer's disease and dementias, there will be even more pressure on beds. The inconsistencies inherent in the processes around assessment will then lead to some people saying "no, I am not going to have your patient in this establishment because somebody else does a better assessment process and is prepared to pay more for more intensive care. Q180 Dr Naysmith: Does that happen? Mr Green: I will not say it is happening now, but it will happen in the future. It probably is happening. I cannot quantify that, but I do not think it is happening to any great extent. I do think it may happen in the future, and particularly as we are in a situation where we know the demographics are going to change. We know there will be increased numbers of people with very high dependency levels, some of which may be able to be supported in supported housing or through community care packages, but some of which undoubtedly will need residential or nursing care. If we do not get our planning structures right now, we will have a great shrinkage in that available resource and greater competition for those beds. Q181 Dr Naysmith: It must follow then that there will be some residents who have been assessed for a level of care that is below what you would anticipate they would need when they are in your members' homes. Mr Green: Absolutely. The problem is that often as well assessments are, whatever anybody says, resource-bound. For example, if you had little in your budget then you would spend much longer justifying your lower level band because you had to justify it to yourself and others, whereas if there is more budget you know you might be more flexible. There needs to be far more re-assessment on a regular basis, and that needs to be multi-disciplinary re‑assessment because the reality is that the dependency levels are such that often people are placed in their end-of-life placements, and at that period in a patient's journey there is a lot of change, and sometimes quite rapid change. We need a commissioning process and a resourcing process that can build flexibility into the system so that people can have their care needs sometimes turned up but conversely sometimes turned down. There is a lack of flexibility at the moment and lack of re-assessment. Q182 Dr Naysmith: You may have heard me refer to a couple of cases I have where people were not properly assessed but were admitted to residential homes on a contract, and when they were subsequently assessed properly the money that came just resulted in the home putting the fee up so that it was of no benefit to the individual at all. Can you tell us how this can happen and what your members' official attitude to this is, if you have one? Mr Green: I think it happens because of under-funding at the initial stage and because the way in which there is a monopoly commissioning approach via either health trusts or local authorities means that homes cannot survive without those contracts to fill the beds. So they are forced to either make self-funders pay more in order to cover gaps, and then when an opportunity arises because there has been a re-assessment of the need - and what has happened is the need has not changed but the assessment and the acknowledgment of the resources required has changed - so the individual would expect to benefit from that, but the reality is that the care needs are being now more properly assessed in terms of their resources. That leads to a very unsatisfactory position for everyone. Q183 Dr Naysmith: You can understand why people would be very unhappy about this. Mr Green: Absolutely. Q184 Dr Naysmith: Because the letter comes to them saying "you are getting so much more money from the Government" and it is ----- Mr Green: Absolutely, and everybody is dissatisfied probably with the exception of people like the commissioners, because nobody ever comes into direct contact with them, so they are not the people in the firing line, and this was about probably inappropriate assessment at the start we need to get this assessment process really clear so that there is a robust and accountable approach for both the care needs but also what those care needs cost. Q185 Dr Naysmith: How often does it happen that you get this late assessment? Mr Green: I think it is happening less often now, but certainly in the past it happened quite a bit. Part of the problem is the variability of assessment and the fact that people have not got clear assessment criteria which is a national one does not help. Of course, you also get people who cross-reference around their own families. For example, the mother-in-law has one assessment, and they think they are in a much higher care band, but they get probably more money than somebody else who they perceive as being in a lower care band; then they get differential approaches. That does not help the process and it leaves people, particularly carers and older people themselves quite dissatisfied. It also leaves providers dissatisfied because they have to deal with the understandable upset that that causes. Dr Morris: I totally agree with everything Martin said. My concern is that previously in the panels there was a perverse incentive for the Health Service to get the social service departments to pay for everything. This has expanded into the fact that the acute sector wants to shift everything on to the PCT and makes it more the responsibility of the PCT. There is some evidence that some people have been imaginative and set up systems whereby the acute sector and the PCT work much more collaboratively to improve the system of delivery to older people. On building on this, one of the things that has been mentioned as part of assessment and as part of my experience is the incredibly poor documentation that homes receive when patients arrive from hospital. They may have got a very complex assessment, but they will not have got their previous medical records. They will not have got their hospital records, their GP's records. They may if they are lucky occasionally receive a discharge summary, because the discharge summary will tend to go to their previous GP. The homes are left with a new patient about whom they know nothing, and they have to then set up a comprehensive system of care delivery. Building on that, when I have been into the homes - and I think it is improving - you often get a system where the GP's records are in the GP's surgery; the care home plans are in the care home; and the medication lists are somewhere else. There is not a holistic approach to providing care, and this needs to be part of assessment and part of the review assessment, the bringing together of ----- Q186 Dr Naysmith: That is clearly something we need to turn our attention to. To turn it round, in the previous session we were talking about the retrospective review, when some people were complaining about the state of records in some care homes. Mr Green: Absolutely. There is an issue about records generally, and it is a fairly easy issue to address as long as we get some clarity about what is required and we build it into a standards regime. One of the disappointments is that some of these things should be addressed by things like electronic patient records, which is costing millions and millions of pounds but probably will not address the very points that Dr Morris mentioned. So we have an opportunity here which has been missed. Q187 Chairman: We are on the case. You know that, do you not? We have been for some time. Mr Green: There are some issues about records, but it is very difficult as well because there is not any clarity or standardisation about what records need to keep, and also ----- Q188 Chairman: And how long they keep them for. Mr Green: Absolutely. Dr Morris's point is very important, that people are sometimes having to start from scratch, not knowing the history, when they get a patient coming through to their establishments. That is not helpful because you start not knowing what the history was. So even if you keep the records for ten years or do them in the best way, you have probably got 70 years of patient records that you did not get to before the patient was admitted to your establishment, so there are some big issues there. Dr Morris: I have a suggestion, that you empower the patient and the carer. I suggest a system whereby the patient carries their own record. Q189 Jim Dowd: Mr Green used the very loaded term "postcode lottery". How do you reconcile your desire for greater uniformity with devolved local priority-setting by PCTs? Mr Green: It is a real dilemma because you need to have local priority-setting, but that needs to be about real priorities, not about budget-led priorities. For example, one of the issues I have about local priority-setting is the accountability of what those priorities are and how you establish which priorities are going to be for area X, and why they are different in area Y. I would not have a problem in terms of the local priority-setting if there was some accountability and people knew why particular priorities were for particular areas. The other thing we need to understand is that local priorities should be responding to local need, but that does not mean that some people should be getting better quality services than others, so there has to be a position where you say "this is our benchmark of what people should be receiving in terms of the quality of the service" and then you build in the local priorities on to that benchmark rather than just letting it be a free-for-all, which it is potentially in my view at the moment. Q190 Dr Taylor: In a previous inquiry, the delayed discharges inquiry, we tentatively explored the possibility of specialist GPs or consultant geriatricians being attached to care homes. Is there any mileage in that? Dr Morris: We would support that. There is an example of this in the north, in Durham, where they have appointed a GP practice to take over a group of care homes. They have also got nurse specialists to provide a case management system to back this up. We are exploring this in Paddington where I work at the moment. But those GPs have had a comprehensive training programme, the GPs with a special interest in older people. I think we now call them practitioners with a special interest. Q191 Dr Taylor: Are there many community geriatricians? I know there are very few. Dr Morris: They are a developing species. There are community geriatricians and they are a developing group. What the British Geriatric Society recommends is that the service that the departments of geriatric medicine provide need to be comprehensive. Within that comprehensive service there would need to be a system of community geriatrics, which includes attachments for GPs and nurses to be trained up, perhaps to teach in nursing homes and so on; so it is about providing a comprehensive service which includes community geriatric medicine. Mr Green: We would support that as well, and we would certainly support it because it may stop the practice that happens at the moment that some care homes and nursing homes have to pay to get GP services, which is an absolute scandal, because those establishments are supposed to be in the community, and the residents should be able to access every other community service. Chairman: Thank you for a very useful session. I am sorry we have kept you so long, but that indicates that we have had a very interesting session. Thank you very much. |