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Health Committee - Minutes of EvidenceHC 1583-II
Taken before the Health Committee
on Tuesday 10 January 2012
Mr Stephen Dorrell (Chair)
Grahame M. Morris
Dr Daniel Poulter
Mr Virendra Sharma
Dr Sarah Wollaston
Examination of Witnesses
Witnesses: Liz Fenton, Chief Executive, Princess Royal Trust for Carers, and Emily Holzhausen, Director of Policy and Public Affairs, Carers UK, gave evidence.
Q451 Chair: Good morning. I am sorry to keep you waiting; it is our first meeting since Christmas, and there were one or two things that the Committee wanted to talk about before we moved into an evidence session this morning. Could I ask you to open the session by introducing yourselves, and also by telling us a little about the role of your organisations in carer support in the social care context?
Emily Holzhausen: I am Emily Holzhausen. I am Director of Policy and Public Affairs at Carers UK. We are an organisation of carers and chaired by carers. We provide a lot of support and advice to carers-we run an information and advice line-and we have been campaigning for change for the past 40 years, from when a woman gave up work in order to care and found that there was no support available whatsoever.
We have a local network of around 55 local branches which are entirely volunteer run, so we have a very strong volunteer base, and we have an affiliate network of around 400 local organisations across England, Wales, Scotland and Northern Ireland. Our job of work is really to be the voice of carers, which comes very strongly through our membership. We must not forget that families who provide unpaid support are really the backbone of care in the community to the tune-I am sure you have seen our work-of £119 billion a year.
We warmly welcome this inquiry and very much welcome having this opportunity to give evidence to you.
Liz Fenton: I am Liz Fenton from the Princess Royal Trust for Carers. We have an organisation which supports a network of carers centres throughout the UK: some 142 independent carers centres that provide a range of services for their clients-carers-within their area of benefit. They provide a range of services from emotional support to benefits advice, information on how to get respite care locally and training-a whole range of services. We support them by providing training, quality standards, policy and information, as well as ways of fundraising locally. We also have a national aspect, which is about translating national quality locally and vice versa, and bringing together nationally those local experiences of carers across the UK to inform policy at the national level.
Q452 Chair: Thank you. I would like to lead off, if I may, by picking up Emily’s point about the £119 billion of the value attributed to informal care. I want, in a friendly way I hope, to begin by challenging the thought process that lies behind that. We all know that many disabled elderly people rely on care from members of their group of friends and family, but for the great majority of people providing that type of care, the motivation to do it is not measured in money; it is measured in terms of the relationship with the individual. I wonder whether the case for proper support for carers, which is absolutely central to effective delivery of social care, is actually strengthened by trying to put a monetary value on what is for the great majority of people simply the discharge of their human obligation to a friend or member of their family.
Emily Holzhausen: I think that is a very helpful analysis. The value of that does a number of things. First, it shows the scale of support that we are talking about. Secondly, we know that people’s relationships are out of love and duty, and it is not on a monetary value, you are absolutely right, but it gives, I have to say, a great sense of value to carers themselves. They feel enormously emancipated by it, and for people who can often be very isolated and vulnerable, that makes a big difference.
The third thing is that there is a point at which a monetary value can be attributed to the support that carers provide, which is where it becomes important when looking at funding social care and that equation. If you were to look at carer breakdown or carer ill health, those equations really start to matter. So I think that part of it is absolutely true, and it serves different purposes, but we do not for a minute think that the 6.4 million carers across the UK are going to give up instantly, because they will not-a lot of them tell us they will not-but many of them want more support, want to be understood and want a better social care system that functions better with health and helps rather than hinders them.
Liz Fenton: It is helpful to put a monetary value because, with the best will in the world, no matter how much a carer wants to carry on caring, if they are not adequately supported, they may not be able to carry on. There will be a cost to that, so it is very useful, as Emily said, to be able to put a figure to that, because then you can compare it with the cost of supporting a carer, which is minimal compared with the replacement care if they were not there.
Q453 Chair: There is a deeper philosophical question. I know Carers UK argues that we should be assessing care need for the cared-for person on a carer-blind basis. I wonder whether that is the right way to assess the care need of a particular individual or whether you should actually look at the pre-existing human relationships and say, "How do you support those pre-existing relationships, rather than trying to disentangle them?"
Emily Holzhausen: We argue it that way round-you have interviewed the commissioners, haven’t you?-because one of the difficulties that commissioners have is trying to get hold of how much unmet need we actually have in the system. That is part of the problem. If you do not know what unmet need there is, it is very hard to assess risk on that basis because you do not know the scale and the size of the problem. We say carer-blind assessment because we think that whoever ultimately takes responsibility for providing care-at the moment it is with local authorities-needs to know the level of need in that household, because then you can start looking at the levels of risk that you might have should things go wrong or people change their mind. What we know about families is that people’s first choice quite often is to look after family themselves. People like to sort problems out themselves within the family. That is why we argue it that way round.
What we would be concerned about the other way round-looking at relationships first, which already happens in a much more informal way-is that people say, "Are you all right? Are you coping? All right then," and do not really delve into it and get behind the great British mentality of coping and saying, "Yes, yes, I’m fine, thank you," when that person might really be at breaking point but does not want to admit it or is worried about upsetting relationships. So if you know what the problem is, you are then able to look at negotiating the kind of support somebody is able to get.
People give very freely and willingly, but they do not want to give up their health. We have people who do not necessarily want to give up work completely. They might be willing to go down to part-time work, which is where flexible employment is incredibly important, but the other way round would probably undermine the caring relationship in the longer term.
Q454 Chair: There is a danger the other way, isn’t there? If somebody says, "Yes, I am fine, thank you," they may actually be fine. The professional may think that in that set of circumstances they would not be fine but, given those human beings and the way they have led their lives, they are fine. The danger is that you seek to substitute your judgment for theirs.
Emily Holzhausen: Yes, but I still go back to the original thesis, that we should be looking at need as it is, and understanding that pattern. I think that will help us understand how families will change and their decisions around care may change over the years to come. We are expecting people to work longer and, particularly women, it is important to stay in the labour market for pensions and other reasons. It is important that we have a modern social care system that works with people and does not leave them in a double bind, making a terrible choice between looking after mum or your partner and having to give up work, which we find in one in six cases.
Chair: I have had my say. Valerie is first.
Q455 Valerie Vaz: There is a feeling that there is a standard family with mother, father and everybody else. Actually, 60% of carers are female and they may be-correct me if I am wrong-single parents or just a mother looking after a child, for instance. I was interested to draw out that: the majority of carers are female, and some are children, who really should be at school rather than caring. Is your analysis quite important in determining how much care is needed?
Emily Holzhausen: Absolutely. I think those family relationships are enormously important. We have different people with different needs. Families are completely different. You might be caring for a parent, a partner and a disabled child. That is all possible, and that is all within our membership.
We provide the secretariat for Employers for Carers, which has done an enormously important report recently looking at people caring at a distance. Those are people on the motorway every weekend up and down trying to sort out care for parents or perhaps older siblings who are disabled. I don’t think that those distance carers are necessarily recognised in the system. We have a system that looks at people living together or closely together, whereas we need a modern care system to ensure that those people are able to manage. That affects people in all walks of life who struggle with that, including here in the House.
On the subject of children and young carers, perhaps Liz would like to say something.
Liz Fenton: Definitely. Young carers are recognised as a major area of caring in the family, where the caring role can become problematic. As has been said, it is part of normal family life for people to care for each other, but for young carers that can become problematic and they need the support to manage those care roles. Their needs need to be taken into consideration during the assessment as well. Often, with the separation of adult and children’s services, the contribution that children are making to care is overlooked and, therefore, their support needs are overlooked.
I very much agree with Emily that the support needs of the person with social care need to be assessed initially, but there is no reason why the carer cannot then be asked how much of that care they are prepared to provide. If it’s the other way round, there is an assumption that you will provide the care and we will make up the difference. If it is done from that point of view there is far too much temptation for local authorities to put pressure on carers to take up the biggest part of care and then make up the difference, which does not measure the actual care needs and risks and does not fairly make it clear what the care needs for that person are.
I should also point out that we have recently carried out some research into older carers, and the fact that the people with the highest levels of caring responsibilities are often over 65 themselves. So, when we are talking about the range of caring, we should remember that older carers are very much in the majority and have specific needs because of their own ill health. Sometimes people even take turns caring for each other through different bouts of ill health. But even permanent, full-time carers-we hear stories of people in their 60s with arthritis and so on having to lift an elderly spouse or an adult son or daughter with learning disabilities, for instance. We need to be aware that caring goes across the whole spectrum and there is not a particular pattern.
Q456 Valerie Vaz: I am sure we all recognise those cases in our constituencies. We all have cases like that. I just want to focus on the comment that you made about the tipping point. You mentioned it in your submission, but could you expand on it?
Emily Holzhausen: There is a piece of work that Linda Pickard did a few years ago, which was published in 2008. It looked at the probabilities of people providing care, and it explained that, given the trajectories of people working and ageing, and the amount of care that was being provided-the whole care system relies on a certain level of input from family, basically-there would be a point at which, given the current trajectories, the amount of family care available would no longer be enough. That was the tipping point that Linda described for 2017, which we talked about in our evidence. That publication was based, in 2008, on an increasing level of social care, and of course we have seen a squeeze to local authority budgets. I imagine that we are probably in that space now where we have reached the tipping point, and where there will be an increasing gap between what family can provide and what the state or private means provide. We are there now.
I advise carers day in, day out, and I get phone calls from people who say, "I just don’t know what to do. I don’t know how to get care, I don’t know how the system works and I am thinking of giving up work to care." My concern is that it will start to eat into people’s choices where they give up work. What we see is that flexibility from employers, a little bit of care, better understanding and a better system can keep those people in work. We need that for the economy as well as for continuing later in life and pensions. As we all know, for people who fall out of work it is incredibly hard to get back in again.
Liz Fenton: There are much higher levels of poverty among carers for that very reason. They have to give up work and they lose out on their pensions. In addition, a recent survey found that up to 60% had spent all their savings on adding care to the package that was provided by the state. They are far more likely to be living in poverty, or certainly to be far less well off than non-carers.
Q457 Andrew George: This partly relates to the earlier debate about being care blind, or at least blind to the family support structure, and these two questions relate to each other, particularly in relation to poverty among carers. If you follow the logic of a care blind assessment and the increasing personalisation of care budgets, would you agree that perhaps the next step would be to allow carers to enjoy some of the budget that might be made available as part of the care plan, rather than to employ carers? Would there be a danger in doing that? One of the big problems, as just explained, is the poverty among carers and the fact they forgo a significant amount of income as a result of the time that they put into caring. I just wondered whether that was an area of discussion that you as professionals have thought through.
Emily Holzhausen: Certainly carers have been talking about it for quite a long time, and it is a really complex area. It is possible to pay close relatives, which is essentially what you are talking about, through direct payments, and it has been particularly important where there has been no other service that has been right or available for somebody-for dementia perhaps, for somebody they trust within the family, for somebody from a particular ethnic background or for a complex disability. It has been very important. It has always pained me when we have had families on income support who have had a whole raft of workers coming in, and yet that family has been on the poverty line. That situation existed when we had the independent living fund, long before direct payments came in. It certainly would be a means to improve carers’ incomes by paying people where there is no other alternative, but it is not without its complexity in that your husband or your wife could become your employer. So it needs some examination. Certainly some people among our membership are very for it; others feel that they would never ever wish to be paid for that care, it is absolutely the last thing they want. But we are not talking about one rule for everybody are we? We are talking about flexibility. So certainly that flexibility is critical because otherwise people would not get support. How far along the downward line it goes needs to be looked at and that is something which I imagine will be teased out as well with the proposals to bring forward a Bill and the Law Commission’s proposals.
Q458 Andrew George: Have you and the Princess Royal Trust for Carers thought some of this through? Will you also be contributing to that part of the debate?
Emily Holzhausen: We have done quite extensively. We have advocated for being able to pay relatives-continuing the option of paying relatives-and you would need to be very clear about what relationship that carer then had within the assessment system. Just because you pay somebody, it does not necessarily mean that they can’t have an assessment of their own needs. It is complex. We could go into it, but you probably don’t want that at this time.
Liz Fenton: One final thing: I think it is really important that carers have the choice to retain that funding within the family rather than paying someone else, as long as it is a choice. My experience in local carers centres is that, where carers were being paid, they were also contributing huge amounts of unpaid care. So they were still unpaid carers, even though they were being paid for a few hours’ care a week.
Q459 Barbara Keeley: I wanted to ask a further question about the tipping point and the financial squeeze that all families are under at the moment. During carers week I gave an example in a speech here of a carer locally who had had to take up an evening cleaning job. The only way she could manage her caring responsibilities and the evening cleaning job was to put her husband to bed at 4 o’clock, which goes against everything we believe should happen in terms of the human rights of people being cared for. Clearly, it is difficult sometimes for people to manage. How much closer do you think the tipping point may be in terms of both those difficulties and the impact of local authority cutbacks in care packages and of the financial squeeze? Presumably you are getting feedback about that into your networks with Carers UK and into your carers centres. Has the position changed a lot since all these factors have come into play?
Liz Fenton: We are seeing that there is a squeeze on the contracts for carers centres where they are being expected to provide more for less funding. That is one aspect of it. We are definitely seeing a squeeze there. Also there is a reduction in social care expenditure generally and that has an impact on carers because, where the care is not being provided, carers are making up the difference on the whole. Carers centres generally are reporting far more cases of people in financial difficulty-debt in particular. Having spent all their savings on additional care they are now really up against it. Some are borrowing at massive interest rates in order to keep going. That seems to be an area of work that has expanded beyond recognition in carers centres over the past few years.
Emily Holzhausen: We run the secretariat for the Care and Support Alliance which is about 55 organisations. Last year we found that services were being cut-this is from memory and I will have to go back and check the figures; I can always provide a note to the Committee-by about 12.5%. That was before the budget squeeze really took hold. We have seen increased charges. Around 9% of people have seen an increase in charges, and the FOI requests that appeared in the press over Christmas suggested that charges have gone up by 12.5%. So it is not just a cut to a service, necessarily; it is also the increased charges that are placing a squeeze.
What we have found, funnily enough, since charges were introduced is that about one in seven people start to refuse services because of worry about paying charges. We are finding that a lot more people are being reassessed, or they are being told that their charges will go up, so we have asked carers to contribute their examples. We will see, for example, somebody who has a bill of almost nothing go up to £250 a month, and they are coming to us in desperation saying, "How on earth am I going to pay this?" Some of those processes that the local authorities have in place are not really working properly, in terms of making sure that people are properly financially assessed.
Liz Fenton: And the choice and control as well. Sometimes the replacement of the care-for instance, day care-may be reassessed as a payment that is often much lower than the actual cost of providing day care. Therefore, the replacement they are able to put in place is nowhere near what they were getting before. It is not universal, but we hear about these things.
Q460 David Tredinnick: How can carers-I want to change direction slightly-help prevent the breakdown of support for a cared person and stop or reduce the likelihood of them requiring more intensive care?
Emily Holzhausen: On something that Liz said earlier, it is really important that people are given the right information and advice about someone’s condition. We expect nurses and medical professionals to be trained for years and years, but we expect a family member to go away with a diagnosis of just, "Well, sort that out. You are on medication, there you go." Five different lots of meds to take a day-have you any idea what they do, what their side effects are, how they work in combination, or how you are supposed to make sure that somebody can eat properly and will sustain a healthy life? The programmes that we have run around training are incredibly important, and it is about looking after carers themselves. A lot of centres run training, don’t they?
Liz Fenton: Centres do. We have taken part in a Department of Health programme looking at how carers can be supported within the NHS to help prevent carer breakdown. There is not enough evidence at the moment, but there is evidence that failing to support the carer means that people are readmitted to hospital with secondary problems and infections and that carer breakdown is the cause of admission into either hospital or long-term care. It is important for the carer to have the information and tools to be able to provide the right level of care to the person they care for, and to care for their own needs. We know that incidence of ill health, and particularly mental ill health is much higher in carers than the rest of the population, so it is about them being able to support the person they care for, to prevent their condition worsening, but also, even if that happens, for them to be able to continue caring. The research that we did last year showed that, on average, by supporting the carer, the carer can continue to care for approximately two years longer.
Q461 David Tredinnick: How does that training and advice vary across the country? Is it uniformly good or uniformly indifferent?
Liz Fenton: The difficulty is that what we have been trying to do is persuade the NHS to provide their care; for instance, if somebody has a stroke and is then discharged to go home with the family, to make sure that the family are properly supported and trained at that stage. There are all sorts of other interventions within the NHS. It is very important there, and that GPs recognise carers as well, so they are able to make sure that they are properly informed about medications and so on.
Q462 David Tredinnick: Yes, but in answer to my question, are there any black spots in the country? Are you aware of any areas that are a particular problem?
Liz Fenton: I think they are everywhere.
Q463 Chair: Are there any white spots?
Liz Fenton: Exactly. It is better and easier at the moment to pick out areas that are doing very well. They are around the demonstrator sites and the particular carers centres that have been funded to specifically provide that kind of support for people. For instance, in East Sussex, for a long time we had a back care advice service. A lot of areas have that, but it is very patchy. It is one-off and depends on how well the carers centre has been able to make the case locally and how much funding is available. To some extent that was very successful, because that project showed the importance of supporting carers to maintain the health of their back and it has been mainstreamed.
Q464 David Tredinnick: Fair enough. However, our briefing says that 62% of carers rate their quality of life as good. Does that mean that the burden on carers is not actually too high at all?
Emily Holzhausen: It tells you that 40% do not. That is four out of 10.
Q465 David Tredinnick: Well, it is a very large majority. It is well over half who are satisfied, so what are your comments on that figure?
Emily Holzhausen: I think that they are very positive. It says a lot of good about our society and how people feel about caring, which is something that we should celebrate. What Barbara and Valerie also talked about was that we have a spectrum of care. We have people who are caring at the heavy end, some of whom will fall into that 62% and who will be very happy with how things are. At the other end of the spectrum we have people who are extremely hard-pressed. Four out of 10 people saying that they do not have a good quality of life is still a significant enough proportion for me to be concerned.
Liz Fenton: That 62% as well can very quickly drop off if they are not properly supported. If there is a sudden change in the condition of the person they care for, for instance, if they are not monitored and supported, they can suddenly go into that other 40%.
Q466 David Tredinnick: Is there an effective mechanism in place to give us the information about the benefits to carers of the caring role, as well as the burdens it imposes on them? Are you happy with the structure?
Emily Holzhausen: Yes. We have done the research on it. If you ask people, there is a lot on our online carers forum, which is run by carers, on the affirming stuff of caring and how people feel that they were able to give mum a good end of life and a good death. They were able to keep their sons and daughters living in the community and playing a full part in the community and were able to give their children the longest and best quality of life possible. There are some very affirming things there. We try to bring that out during things such as carers week, but there is also concern on those four out of 10 when things start to bite.
Q467 Grahame M. Morris: I want to take you back to an answer you gave the Committee a few moments ago. I think we all accept-certainly I do-that carers exemplify the good society and make a huge contribution. This informal, unpaid care is often to family members. There has been an attempt made by the Department of Health to quantify that. Can you quantify the numbers involved for the record of the Committee? I know that you have done that in the written evidence.
May I also take you back to the answer you gave a little while ago on the increased charges and the pressures on social care, not just in terms of care charges, but in terms of transport charges and so on? How does that square with the number of assessments that are being carried out on carers and, subsequently, those carers being awarded care packages? Is that at odds with the fact that we have this huge number, with growing demands and growing pressures on them, yet the assessments and care packages for carers are falling?
Emily Holzhausen: Yes, that is a correct analysis. You will have seen from other evidence that the amount of care hours that are provided in a community are going up, but to fewer people. Who else is providing care to those very vulnerable people? Are they self-funding or is it family? What we are seeing in the statistics of carers is that you have a steady increase at the heavy end of over 50 hours of care from about 650,000 to 750,000 in 1985 to more than 1.25 million now. We have seen that increase again on population projections. Family is increasingly taking on that role.
To go back to the number of assessments, it is difficult to say, because the performance criteria drove assessments. So it’s hard to say whether people are actually getting better outputs or not. The number of assessments for carers did increase, but I am not sure where they are now, to be honest, with data. Certainly, the charge is increasing-as I say, I think it’s about 12.5%. It is having a squeeze on family incomes. People do have to make a hard choice about what they are going to spend on. Is it going to be fuel? Is it going to be food? Is it going to be the children, or am I going to say no to that service?
Q468 Grahame M. Morris: I understand. I don’t know whether you can confirm this, but figures that have been provided to the Committee indicate that there has been a 3% fall in the number of carers assessed and a 2% fall in the numbers receiving a care package arising from that assessment in 2010-11. Is the total number of carers, in your estimate, around 5 million adult carers?
Emily Holzhausen: It’s 6.4 million across the UK. I can’t remember what the numbers are for England. It’s about 5.4 million, roughly, for England and Wales.
Liz Fenton: The household survey 2009-10 found that only 4% of carers are being assessed. Nearly half had had only two days’ break since they started becoming a carer. Even for those who have had an assessment, approximately half of the cases we looked at had had only simple information, and not even a referral to their local carers centres.
Q469 Rosie Cooper: You’ve talked very generally about the issues today, and I’d like to drill down to a couple of specifics. Before we do, do we have any idea or projection of how many carers there are out there whom we don’t know about?
Emily Holzhausen: An enormous, well-
Liz Fenton: It depends how you define that. People who care for only a few hours a week, who might actually be making all the difference, may not identify themselves as carers. The biggest problem that we have in our sector is that people see themselves as doing something that is a normal part of family life, and not as carers. They may be the 62% who are carrying on quite happily. It becomes about making sure that people recognise, when they need support, that they are carers and that they can get the support that they are entitled to from being a carer. That is a major problem: to get people to identify themselves, let alone other professionals to help identify them.
Sorry. What was the question again?
Q470 Rosie Cooper: Basically, have we got any projection of how big the number might be out there?
Liz Fenton: The last census had 10% of the population. It corroborated the view that we had before, which was that it was about 10% of the population who recognise themselves as providing a caring role.
Q471 Rosie Cooper: I ask the question because we visited Lancashire. In my area, there is a huge increase in cost and the take-up is dropping dramatically. But I also speak from a personal level. For example, both my parents were profoundly deaf, having been born deaf. As a child-I was the eldest child-I would be and have been the carer there the whole time. But I would have never recognised that, because that was normal; that is what we did and we got on with it. Now, my father is 87. He has had a number of strokes and needs a lot of support. What is absolutely amazing to me is, for example, he has vascular dementia, and the psychogeriatrician says that he needs to go to a day care centre. That is not a question of money. The day care centre says to me, "No point in him coming here." Why not? "Can’t communicate with anybody. Therefore it is pointless." He is not going to go into a home. I preface that before I say the next thing-I am having an extension to my house being done now, so he’s not going to go into a home. But I asked the local deaf social worker, "Is there a residential home where there are people who could communicate with deaf people?" "Yes." "Could I go and see it?" I went there, met the manager, and had a cup of tea. "How many people in here sign?" "None." So all of that is not quantified by money; you cannot provide that service. So never mind the people like me who were an unknown number and who were doing it because it was normal. We have now shifted 60 years on. I used to say I was kidnapped by the deaf community. Now I am set free and I am out here trying to do the best, and the system cannot meet that need. There are hard-of-hearing and deaf people out there who people cannot communicate with. They are isolated in a community and nobody appears to give a stuff. So how do we deal with that?
Emily Holzhausen: I think that is partially the measure of the unmet need. That is why we mention the carer-blind assessment. The family pick up and you support and you do all those things. You actually do not know when this will come out. It is not just the fact that your father is deaf; it is also the fact that he has dementia. Somebody has to understand the communication issues that you have with both, because they are quite significant, and that is why we need to measure it.
Q472 Rosie Cooper: It’s okay us talking about the generality, but how does the specialism-the communication difficulties-figure?
Liz Fenton: That is why the personalisation agenda is so important, so that people’s needs can be looked at individually and they can buy in the support that they need rather than having to go to-
Q473 Rosie Cooper: How can you go to a day care centre that is not there? How can you buy a residential place that is not there?
Liz Fenton: In circumstances like that, the family needs to be talked through the options to get the outcome that they need, but it may not be from a day centre. It may be from someone visiting. There might be all sorts of other ways that that need-that outcome-can be met without necessarily one particular answer.
Emily Holzhausen: He should be assessed as part of the care package.
Q474 Rosie Cooper: He has been.
Emily Holzhausen: Exactly.
Q475 Rosie Cooper: And there isn’t an alternative. I have explored every avenue, from the leader of the council right through to every system going-health and social care-and the answer is that there is no provision. So where is it?
Chair: You are a carer elected to the House of Commons.
Rosie Cooper: That’s my frustration. There will be a lot of people out there who are stuck in a conundrum of this sort-it will be a different conundrum-and it has to be on the table. I am not exactly unable to make that case and make that noise, and it is not met.
Liz Fenton: Definitely. We see that all the time. There are all sorts of examples of people who are in dire straits in sometimes unbelievable situations of caring, and there appears to be nowhere to pick them up. At least with the carers centres and the local information, we are able to provide support and information. Where there is an answer, we help the carer to find the answer, but there are always difficulties, definitely.
Emily Holzhausen: Also, it is partially a lack of understanding of the real importance of communication needs and cultural need among different communities-for example, the blind and deaf-blind. But it is also an issue of squeeze on funds. We are seeing increasing numbers of specialist services that are less available.
Q476 Rosie Cooper: Absolutely, and interpreting is a big one.
Emily Holzhausen: It’s a huge one.
Q477 Dr Wollaston: Can I move on to the Dilnot commission? You have both set out very clearly some of the financial burdens on carers-the shocking data that 60% of them are using up all their savings and a further 53% are borrowing money, often at high interest rates, to cover their costs. You have also stated-I know Liz Fenton has-that the priority has to be on reducing the financial burden on carers. How far and to what extent do you think the Dilnot report addresses this, and how successful do you think it would be if it was implemented?
Liz Fenton: I think it would be a definite step in the right direction. It would mean that there was a clearer sense of eligibility across the whole country, so that would be helpful for carers. They would know exactly what they are dealing with with their local authority. It would not be left up to local decision making. The cap would be very helpful as well. Certainly where carers may be relying on whatever is left of the estate to be able to live on after the person they care for passes on, for instance, that could make a huge difference. I don’t know whether Emily wants to add anything.
Emily Holzhausen: I agree with the cap on the spending of savings on care. One of the other important things I wanted to say-because we are very interested in systemic change and long-term change-is the fact that people come only to our services when there is a crisis. People do not plan for care. They do not expect it, yet the statistics of people who require care-from a cleaning service because they are getting increasingly frail or less able to manage all the way through to very complex care-show that it becomes something that virtually all of us expect to need at some point in our lives, yet none of us is planning for it. That is one of the difficulties.
You do not necessarily expect your husband to be diagnosed with MS; nobody wishes that one of their parents would get dementia and what might happen in their lives or, indeed, other conditions. Too add to what Liz said, the forward planning and the understanding that something like that might happen to us is incredibly critical. It might be that the carers’ financial situation has improved because the person who they are caring for has planned well for care, and has the means to buy care or go through the system and be properly supported so that the carer does not have to supplement anything.
Q478 Dr Wollaston: Do you have a view about the level of the threshold and the level of the care?
Emily Holzhausen: The cap is where it is set. I know that the commission put a lot of thought into it, thinking about what is right in terms of the balance of what you get in behavioural change as well as what feels right in terms of contribution. If you increase that, it changes those effects and behavioural changes to £50,000, as modelled. There are a variety of costs associated with it. Of course, we would prefer a cap of around £35,000, but it also depends how money is in the system and where we are going with it.
Q479 Barbara Keeley: Speaking on the Dilnot report, the care meter to meter the cost of care up to the £35,000 cap is not to include informal care provided by family carers. Do you agree with that or do you think that it is something that perhaps the Dilnot recommendations did not get right in its record or should change?
Emily Holzhausen: We did look at it. It is quite a complex issue looking at metering. We thought that the Dilnot proposals were quite clear-clearer than what we have now in terms of the system, and that has to be a good thing. What is complex in metering as well is that it might not just be the older person who is spending their own savings; it might be the carer who spends their own money to support them, which a number of people do. Our basic tenet is that carers are not made worse off and that they have to be supported by the system.
With the Dilnot report, you have to spend up to £35,000 anyway for savings in order to have your assets protected. In some respects, the difference between spousal and son or daughter is complex. If it were spousal care, it is usually shared assets, whereas son or daughter care is a different relationship. There are a few complexities in metering that we need to tease out.
Q480 Barbara Keeley: But are you concerned that there is a disincentive for families to provide care, given that it does not count towards the £35,000 cap? If outside care were brought in, that clocks up towards the £35,000 and then care can become available. But all the equivalence of providing informal care doesn’t count.
Emily Holzhausen: No; I am not worried about a disincentive to provide care because it might affect a few cases but, on the whole, we do not see people making decisions to provide care around that. They tend to spend money where they really need to, unless they really feel that they cannot afford it. They tend to make choices around care based on love duty and those kinds of relationships. I would like to examine it perhaps where some of the relationships are more complex, but I am not worried about it being a disincentive.
Liz Fenton: However, if it is a positive choice, that is good thing generally, anyway. If that allows a positive choice to care, rather than a requirement to care, that has got to be better for the carer and for the person that they care for, so that they are not under stress and they do not feel that they are doing something which can be a very tense situation, particularly if they are caring for someone with challenging behaviour in some way. To have positively made that choice out of a decision that we want to give the best care, increase independence and all the good things that can come from caring, that is much better than having to make a decision because of money.
Chair: Grahame, do you want to raise the impact of the Law Commission?
Q481 Grahame M. Morris: In relation to the framework that has been proposed by the Law Commission, do you have any particular thoughts that you want to share with the Committee in relation to how that will impact on carers?
Liz Fenton: The recommendations about the assessment are very, very important. We are concerned-this is very important-that the assessment is not seen as an end in itself; it is obviously a means to an end. We would not want assessments to be seen as the achievement; it is really what comes out of that. At the same time, having said that, an assessment can often be the first and only time that the carer has had a chance to talk about their life and the stresses and strains that they are under, and so on. If it is done properly, an assessment can be a very empowering and very important part of the caring process. We would very much support assessments, and for those to be done at the same time as the social care assessments, so long as they are separate and independent.
Q482 Grahame M. Morris: In relation to the carers’ assessment, you would strongly support the particular recommendation on the issue of portability-to end the postcode lottery and inconsistencies?
Liz Fenton: Definitely, even if it is only for the time that it takes to reassess in the new county or whatever, because that gap can be huge. I would also argue that there would have to be a strong case made for any major changes. If there is an eligibility criterion that goes across the country, quite a case would have to be made, I would argue, to change that assessment massively.
Q483 Grahame M. Morris: Is there an argument for ring-fencing money specifically to support carers, perhaps for respite care? There is a huge issue about unpaid care and so on, but in terms of supporting them in their activities-supporting relatives, families or friends-is there an argument for trying to ring-fence an element of money just for carers for that particular purpose, rather than it going to the individual who needs care?
Liz Fenton: Yes, I think there is an argument for both. It is whether it is a need for the person who is cared for or for the carer, but definitely, if there is a carer involved in any form with either assessment, there needs to be a strong consideration of their needs for a break. The present Government have made money available through the primary care trusts for respite. Unfortunately, very little of that has actually been used for respite, but we saw that as a real step in the right direction. It is very important that carers are able to get a break, and that the person who they care for gets a break from them as well.
Q484 Grahame M. Morris: I think the last Government made money available for respite.
Liz Fenton: That’s true.
Q485 Grahame M. Morris: My particular PCT ring-fenced that and dedicated it for carers.
Liz Fenton: But very few did, unfortunately. Although we are hoping that that will change over the coming year, we have not seen a lot of change; there has been some change.
Emily Holzhausen: May I add something to the legislation point? I think it is an enormous opportunity for us all to simplify things and, to come back to your point about care-blind assessments, to have the proportionate assessment so we have light touch, which is incredibly important right to the other end of the spectrum. The other two points I wanted to make are-
Q486 Chair: Before you move on, what did you mean by light touch? Who is in favour of heavy touch?
Emily Holzhausen: No, well, you do need complex assessments where you have much more risky situations, very complex family relationships and complex disabilities-that kind of thing-so you would need more time, more professionals to come in and have a look. But where we can, we should be looking at lighter-touch assessments and using the expertise of families as well.
There are two points I wanted to make about the legislation. One is that, when we go forward, we will end up with some rump legislation, as it is called; it is not a very nice term. We are talking about giving stronger rights to carers caring for adults. We need to remember that parents of disabled children, for example, will not necessarily have as strong rights as adults caring for adults. We need to remember that we need to link the legislation up with young carers. We need to ensure with any legislation going forward that they link up and we accord the proper rights.
The final area is around integration. I don’t think it was possible for the Health and Social Care Bill, but we need to look at the shape of social care legislation and whether we should look at additional integrated duties on health to look after carers. I won’t get into the Health and Social Care Bill now.
Chair: Indeed, that is quite a big subject. Andrew.
Q487 Andrew George: Going back to the portability of care. To what extent do you both take the view that what we should be driving towards is a national standard, and that there should be less-or indeed no-local variability to that? As a supplementary, I would like to ask to what extent the problem of variable assessments and lack of portability of care is a problem. Isn’t it the case that most care settings mean that a lot of people are not terribly mobile and, therefore, we are talking about only a small proportion of families where that might be the case?
Emily Holzhausen: There are two issues there. One is the portability and there are a small number of families who move or wish to move, and that causes a number of problems, as you know. Possibly people make decisions not to move as a result of not being able to guarantee what will come, and the uncertainty of that.
The other issue is that portability has around national entitlement eligibility criteria. There is the evidence you will have heard from other people around being able to plan for the future if you know what you are going to get. That universality is a basis on which we can all plan, not just the insurance industry or any other mechanisms. It gives us a common centre and hopefully makes things easier for advice services like ours at a national level, or indeed at a local level, to explain the system, which takes hours and hours of our time. We are an over-subscribed service; we have a very high percentage of people who cannot get through.
Q488 Andrew George: What have you learned from the cases where you have taken up complaints about the lack of portability? Have you been able to persuade local authorities that have taken the less generous approach to the assessment in those cases to vary their views?
Emily Holzhausen: We have found that a number of cases have ended up in the High Court. We have found that it is an extremely long, drawn-out, painful process on the whole. The difficulty is that we will tend to hear of the ones that go wrong, so we won’t get to hear of the ones that go right. If I am taking advice from my information advice service rather than surveying the population as a whole, you would possibly get a different view from a different set of cases. Where there is complex care involved, when things go wrong they go spectacularly wrong.
Liz Fenton: The thing is not just the eligibility as far as parity. It is the portability in the sense that if you have got a complex package of care for someone you care for, say a child, and you have all sorts of different components of that care, it is getting that put in place in the new place. It is not just whether you are eligible for it; it is getting it so that it is in place. You cannot wait a month for the care that that person needs to carry on being at home. They may need constant 24-hour care at home. They cannot say that they will wait a month until they are reassessed and then decide what package of care is. It doesn’t work like that.
Q489 Chair: Can I push you a little on this? It seems to me we are in danger in this world of accepting some of these concepts as no more than common sense, without thinking through what the implications are. With the concepts of portability, national assessment, personal budgets and cash payments-and I set them out in that order-it seems to me that what you are doing, if you are not careful, is reinventing social security. I wonder how that is remotely compatible with light-touch assessment of different circumstances in families and with genuinely personalised social care. Is there not a choice to be made between whether we go in the direction of a very standardised system, which will be one size fits all because it has to be at a national level, or a genuinely personalised system that is capable of being flexible at a local level? Is there not a choice to be made?
Emily Holzhausen: That is a very interesting question, particularly given the developments with the new personal independence payment and the way that is being assessed. I do not think the national assessment is moving to be as prescriptive as the personal independence payment. I think that decisions and spending on care will always be local issues in terms of what you can then buy, how it configures and what other support and family networks you have locally. How that happens is very different.
Q490 Chair: But if it becomes a form of entitlement against a national definition, the scope for local flexibility is going to be local decisions fitting people into boxes, rather than asking yourself how you deal with this set of family circumstances, isn’t it?
Emily Holzhausen: Yes. We surveyed our membership to see whether they would like a national system or local flexibility, and, of course, they want both. Everybody does. The best system would have an element of both.
Liz Fenton: I do not think that they are mutually incompatible. I agree that it is not necessarily one thing or the other. Having national eligibility standards gives a benchmark, obviously, for the assessment and choice locally. Family choice and decisions about how they want to live their lives has to be part of that decision, no matter what the national eligibility criteria are. So there have to be levels of choice at every level within a framework that is nationally dictated so that people know what they are entitled to, if that is what they choose. Local authorities are responsible for ensuring they are offering that as an outcome, rather than as a prescriptive list of services.
Chair: I understand how you can use the words to reconcile it, but I am not sure how it works out in practice.
Q491 Barbara Keeley: Just a final point on Dilnot, if it is the final point on Dilnot. In the sessions we have had with people from the different stakeholder groups, it has seemed quite difficult to take forward the debate on Dilnot. Clearly we need a debate on it because, as Andrew Dilnot says himself and as you have touched on, most people do not tend to think about social care. Most people do not plan for it, and they certainly do not plan for funding it, even if they think about it at all.
There are 6.4 million carers, but you said that they only come to you in a crisis, when they are at the absolute point of not managing. It is my contention that social care does not get enough debate time in this House. Although this Committee is inquiring into it, the House spends more time thinking about planning, forests and football governance than it does about this crucial issue. Even over Christmas, we thought more about 40,000 people with implants that might be faulty than about those 6.4 million people. Ten per cent. or more of all of our constituents are carers, yet, because of their situation, they perhaps do not have time and are too hard-pressed to come to surgeries or to be in touch. What can we do about that over the coming months? Perhaps I will leave it with you, because I think it is important to do something. I do not think we are going to reach cross-party decisions on investing billions of pounds in social care without the temperature being raised a bit. It seems to me that there is a stumbling block in getting people thinking about this, talking about this and raising it with MPs. I do not know whether you have thoughts on that or whether I should leave it with you.
Liz Fenton: That could take a long time. It is a major issue: getting people to recognise that when they are at the stage where they are relatively comfortable with their caring role and do not realise that it may not stay like that and that they will require support and are entitled to it. The seven demonstrator sites across the country were looking at the impact of the NHS having more responsibility for carers, and I think that could be a huge step in the right direction if the NHS had a statutory responsibility for supporting carers.
We have found that carers are in crisis is when the person they care for has to go to hospital, and yet they are often not recognised at that time. We have found that we can make a huge difference by being available in hospitals and around the discharge process, and being there when people come out of hospital. It is the time when they are amenable; they recognise themselves at that stage, because it is a crisis. There are other touch points where we can get in touch with carers.
As we have all said, it is very difficult because there is a point at which you change from it being a normal part of everyday family life to being a carer. That may creep up on you over years, or it could happen suddenly with the birth of a child or someone having a stroke. There are all sorts of ways it can happen, and because of the nature of the role and the isolation of carers, and the fact that they are not necessarily identified by the professionals or the community around them, they can spend many years struggling with massive responsibilities and stress without any support at all. We have got to find ways of reaching them at an earlier point when they are relatively happy and saying, "No, I am fine with the caring role", and making it clear that when and if it does happen-and also to reach them at a stage before they go into crisis, so that we can hopefully prevent that crisis.
Emily Holzhausen: One of the issues, and Andrew Dilnot has said this on several occasions, is that care tends to be a private matter that people do not necessarily raise. They do not necessarily raise their need for care. We have some fantastically vocal disabled people in our communities who do, but it tends to be a private matter that people do not raise. We have to really change that and put it much more into the public domain. There will be a lobby of Parliament on 6 March-I hope I have got that date right-where disabled people, older people and carers will be coming hopefully to meet MPs, to say how social care needs to be reformed and to emphasise the urgency of that. It is incumbent on everybody, and one of Andrew Dilnot’s recommendations was to make it a public awareness campaign. In this short period that we have before we have a White Paper, I hope that people will be able to raise their voices. A petition is going round to try to get some signatures, but care still remains very much a private matter among people, although of course we have to change that.
Chair: The final set of questions, and then we need to move on.
Q492 Dr Poulter: You touched on a plethora of issues concerning carers-understandably, because there are a whole range of issues, including, for example, carers who have to travel to care-but I would like to focus on the big issue here, and the big issue for the Committee, which is elderly care, and better looking after older people and supporting people who are caring for older relatives. Such people make up the bulk of family carers and carers as a group.
In that respect, you mentioned earlier, Emily, in your evidence that there is a problem. I think you said that one of the main issues is how social care can better function with health to support carers. That is something that you raised earlier, and it seems to me to be a crucial issue throughout the whole debate and our whole inquiry. If we look at how that happens, there are issues around respite care that you have touched on; there are issues about day centres; and there are issues about better training and support for carers given by both the NHS and perhaps social services. Can you give a picture of how you think those issues are addressed throughout the country? Are they addressed well? Is there joined-up thinking? Is there the proper support for carers in place to enable those resources to support respite care? Are the resources being put in place to provide that education and support for carers to look after their relatives?
Emily Holzhausen: One of the difficulties about the NHS is that it focuses on the patient. It tends not to look at the support around it, so it does medical professionals and patient very well, but it does not do family and patient very well. That is where if you are interacting with the NHS it becomes problematic. Across the whole NHS if we have things like the QIPP programme, where we embed carers in that, making it part of productivity and performance, we completely change the relationship that the NHS has with families.
Q493 Dr Poulter: I don’t think that is true of healthcare professionals when looking at the families. I think perhaps the funding structure of the NHS does not recognise necessarily the role of carers and their support. Is that a fair point because it would be very disingenuous to professionals to say that?
Emily Holzhausen: No. I think it is disingenuous to say that the whole of the medical profession does not do that. That is completely disingenuous. I apologise.
Q494 Dr Poulter: It is certainly not what I saw in the summer when I was working with doctors.
Emily Holzhausen: There are some fantastic medical professionals out there. When we look at the data around hospital discharge, for example, which is a classic point where you expect the family to pick up, 30% are not consulted about it and it is too short and about 28% thought that emergency readmissions were a result of too quick discharge and not proper assessment. That is really where we want to change things. You need to see people as partners. The best medical professionals already do that and where that happens-
Q495 Dr Poulter: Do you think it is that the system is set up in a way that does not allow professionals to do that effectively much more than that professionals do not want to do it?
Emily Holzhausen: Yes.
Q496 Dr Poulter: The way that the tariff system is set up in hospitals, for example, and a payment by results system encourages short-term views and institutions to do what that institution does rather than to look at the whole person or the family and the issues to do with discharge planning in an effective way. There are good examples where it happens, but the system is set up in a way that does not support professionals in doing those things.
Liz Fenton: No matter how good, they are they are not measured for being good at supporting carers. They are not funded for it either, so that is a major disincentive. With discharges, for instance, the incentive is to get someone out of hospital as quickly as possible, not to make sure that they don’t come back in a month’s time because that is a different funding stream. That sort of thing has not been thought through. The short-termism is a major problem, particularly with hospital care. They are not looking at what might happen if the carer is not supported, in that they might not be able to maintain the level of care that is needed without training and support.
There are definitely disincentives. There are few incentives and lots of disincentives for supporting carers within health. There is no real measurement yet of the benefits to the NHS of supporting carers. Benefits are usually shown as social care benefits. There is no immediate and short-term benefit to the primary care trust budget, for instance, of supporting the carer, even if it is about the health of the cared-for person; that tends to be long-term and has not been quantified.
Q497 Dr Poulter: So in summary, you are saying that there is a financial fragmentation of care and people then have to present in crisis, as you were saying earlier, with that revolving-door syndrome where people don’t get the proper discharge planning they need.
Liz Fenton: Exactly, and by that time the care has probably broken down and they will have to go into care or not come out of hospital for a long time. That is not necessarily the problem of the hospital. A lot are taking that into consideration. We know a number of PCTs that have invested in support for carers, but it is quite minimal compared to the need. It has shown huge benefits to the hospital environment, apart from anything else, and the strain and stress on nursing staff, to have carers properly supported. Often that relationship breaks down and then causes problems for the nursing staff.
Chair: It is a subject to which we shall return, I am sure, many times and probably in the next session as well. Thank you very much for your evidence. You have given us plenty of food for thought.
Examination of Witnesses
Witnesses: Dr James Mumford, Senior Researcher, Centre for Social Justice, and David Orr, Chief Executive, National Housing Federation, gave evidence.
Q498 Chair: Thank you for joining us this morning. I would like, if I may, to ask you to begin by introducing yourselves and your organisations, and to say a very brief word about the interest that your respective organisations have in the inquiry we have going on into social care.
David Orr: Thank you very much. I am David Orr, chief executive of the National Housing Federation, the trade body for all the housing associations in England.
Our members house about 5 million people. Over half the housing associations in the country provide specialist housing and support of some form or another. You will all be aware of the large-scale specialists, like Anchor and Housing 21, which provide for older people a huge range of other support and care services, covering a whole range of different people. However, this is not just an issue for us of the specialisms within housing associations or specialist organisations. Something like half of all housing association tenancies are now held by people who are 60 or over. It is our assumption that that group of people, as they age and become more frail, are likely to require considerable degrees of support and care, and that very often that support and care will be provided in their home rather than in some external residential setting. Indeed, we think that is exactly as it should be, but we do not think the systems and structures are in place yet to ensure that it is properly delivered.
On one broader point of introduction, those of us who have been involved in housing have felt a degree of frustration over the years that the health and social care debate is a health and social care debate. We think it needs to be a housing, health and social care debate, because it is almost impossible, outside the delivery of acute services, to consider how best to meet someone’s needs unless they are properly housed.
Chair: Thank you.
Dr Mumford: My name is James Mumford. I am a policy researcher at the Centre for Social Justice, which is an independent think-tank established by the right hon. Iain Duncan Smith in 2004. We had done a lot of work as an organisation on the causes of poverty in the UK, around the "Breakthrough Britain" report in 2007, and we arrived at 2010 realising that older people and poverty-which many older people face-was an aspect of social breakdown in the UK that we had not focused on. We were commissioned to do a review for 18 months, and we wanted to look at a number of issues in the round to do with older people, so that we did not miss out things like housing, but social care was an important part of what was the final report published in June 2011, "Age of Opportunity".
I had the opportunity, over 18 months, to travel the country and to visit lunch clubs, day centres, befriending charities, extra care housing and dozens of care homes, hospitals and home improvement agencies, and to talk to hundreds of older people. It is from that experience that I would like to draw this morning.
Q499 Chair: Thank you. I want to begin, if I may, with a set of questions related particularly to the housing agenda and the theme that Dan Poulter was concluding on with the last set of witnesses: the importance of integrating health, social care and, according to the point you just made, social housing. How do you feel that agenda is going? What are the principal obstacles to delivering more integrated services and what are the opportunities available to us if we deliver those services more effectively than we have in the past?
David Orr: First, I don’t think it is just about social housing. Clearly, housing associations are what we do, but I think that this is a broader housing question about proper integration. What are the advantages? Let us start with the most obvious kind of example. If someone is getting a bit frail and a bit unsteady on their feet and it is possible to install some grab rails in their home, it may reduce or even eliminate the potential that that person will fall, break their hip and need an acute emergency admission. That is good for absolutely everyone, but there is not a strategic environment where the discussion about how those relationships fit together takes place. The proposals in the present Bill on the creation of Health and Wellbeing Boards could easily be precisely that place, if it becomes an environment for people who have a degree of expertise and a legitimate interest in that strategic overview.
It is not just about operational stuff; it is about thinking strategically about how we create the environment in which it is possible for different voices and different expertise to be heard. It would be true to say that our experience of the health service is that it is quite a self-contained organisation. In a way, it is so big that it is difficult to find the routes to that kind of strategic discussion, either at a national level or a local level. Health and Wellbeing Boards may well be a mechanism for doing that.
You will not be surprised to learn that we think that there should be, as a matter of course, a housing voice. It does not really matter specifically whether it is the local director of housing or someone from a housing association. What matters is that that degree of expertise is available at a local level to inform the thinking that goes on. I think that the advantages of doing that are potentially quite profound. We gave a very small example in our written evidence of Havebury Housing Partnership, which has come to an arrangement with a local hospital about discharge. They provide a flat, at a cost of £150 a week, which stops someone potentially having to stay in hospital while the discharge programme is properly set in place, at a cost of £2,800 a week.
There are examples all over the country. The Home Group is presently exploring "the good death". I think it is using that terminology and I hope it continues to do so. It is well aware of the fact that the huge majority of people say that they want to be able to die in their own home. Well, Home Group, like every housing association, is providing many of those homes. It wants to explore how it is possible to help to make that happen much more cost-effectively for society and much more comfortably for the individual. It is about exploring individual components of this, as well as putting in place a strategic environment where it is possible to bring the issues together and think comprehensively about how the different components relate to each other.
Q500 Chair: Is there any academic or research evidence that you would point the Committee towards that looks at what opportunities exist to improve the use of the resource and the efficiency and quality around the kind of integration that you are talking about?
David Orr: The research evidence in this territory is flimsy. The kind of research evidence that we have is about impacts. There is research evidence of the value of having a warm and secure home, in terms of reducing demand on the health service. There is research evidence about the impact of the supporting people funding, for example: £1.6 billion generating £3.4 billion of savings, and many of those savings are in health. However, more open-ended pure research of the kind that you are suggesting, Stephen, is thin on the ground.
Q501 Chair: I asked the question partly because I wondered whether Dr Mumford in his travels round the country had identified this as an opportunity for improving the structure of the way care services are delivered.
Dr Mumford: I would agree with Mr Orr about the research base academically around this. We have seen from the most dynamic home improvement agencies working in the private sector-I know less about housing associations-key interventions, which have literally saved people from hospital admissions. I can think of one in Leeds I went to where things as small as grab rails, ramps and stairlifts-that kind of intervention housing-wise-have had a huge impact on health, although the savings for the health service do not incentivise. They are for the health service, even though the investment needs to go in through the disabled facilities grant system, or through local councils. There is definitely an evidence base around that.
Q502 Rosie Cooper: I was going to ask a question about standards, but I would like to react to some of the things that you both just said. For example, regarding Health and Wellbeing Boards, I hear you talk about the strategic aspect, and how they might influence or inform thinking. I am totally supportive of Health and Wellbeing Boards but the truth is currently, in my view, that they are powerless. They can think and talk and strategise but they cannot actually drive change. I wonder whether you could say how you thought that Health and Wellbeing Boards would be able to drive change and link commissioning for health and social care together, and how they would acquire the teeth to enforce and not just advise. We are awash with advice; we actually need to make some changes.
David Orr: That is a very good question. The relationship between enforcement and getting on and doing things is a critical question. I am not absolutely certain that enforcement is necessarily the best way to achieve the outcomes that we are looking for. I think the closest parallel that housing associations have been involved in have been local strategic partnerships, where you might say that many of the things about those strategic partnerships are similar to the proposals for Health and Wellbeing Boards.
The experience of local strategic partnerships might be described as under a normal distribution curve. At one end some of them have been stunningly good; at the other end some have been stunningly bad. In the middle there is a range that varies. What characterises the good and the bad? Can we learn from that? Can we make sure that these things don’t happen? If I can start at the negative end, the thing that characterises the bad is where people attend them believing that their job is to stay in control and to say, "We are the local authority, we own this, we are not really going to let anyone else influence what we do."
At the good end, it is regarded as an open opportunity for people with knowledge and expertise to contribute to how we improve this society, this place; how we improve the decision-making process. You may have a Health and Wellbeing Board with enforcement powers, but if it is operating at the bad end, the enforcement will not be helpful at all. How do we construct these, so that they have the people on them and the willingness among those people to make them fly?
Q503 Rosie Cooper: Absolutely. Let’s just talk about the good end. We have an absolutely fabulous Health and Wellbeing Board and we have come out with a really great strategy that does not actually tie in with what the commissioning board wants to do. They don’t have to be listened to; they just have to be present. What happens then?
David Orr: One of the major questions in all of this is about the quality of commissioning. If you have a great Health and Wellbeing Board and poor commissioning, and if you give the Health and Wellbeing Board enforcement powers to tell commissioners how to commission, is that going to provide a sensible solution? I don’t know. It is not something that we have given much thought to, because it seems an improbable place to get to, but it might.
Q504 Rosie Cooper: I will leave that one there. I would just leave you with a non-enforcement type of statement: I know of one local authority where a non-urgent appointment with an occupational therapist would take 87 weeks.
David Orr: We know plenty like that.
Q505 Rosie Cooper: So we need a lot more.
The Committee has heard that social care standards in England are very low and that residential care accommodation standard is probably the worst in Europe. When we met the CQC, it indicated that it monitors at minimum levels. Do you agree with those statements? Do you have any evidence to support that?
David Orr: I have no basis in proper research evidence that we have gathered to challenge that statement. We have not done a kind of specific exercise that looks solely at the experience of housing association-provided care. My anecdotal evidence from spending a lot of my life touring the country, meeting housing associations and seeing the work that they do is that the majority of it is of quite good quality. I have visited establishments where I think, from my non-expert view, that the amount of thinking that has gone into how you provide good residential accommodation for people with dementia is at the cutting edge; it is as good as you can find anywhere in the country. But we have not done a kind of specific piece of research about the experience of housing associations and the care provision.
What we do know, of course, is that housing associations involved in this are regulated not just by the Care Quality Commission, but by what is presently the Tenant Service Authority-that’s about to change. I tell you what. If you are working in a housing association, it feels like the regulation is pretty stringent.
Rosie Cooper: Oh well, let me tell you: I have had a great deal to do with the TSA recently, and I can tell you that other than the nuclear option, they might make you feel a bit frightened, but they do not actually deliver.
Chair: That is slightly outside the scope of our Committee, if I may say so.
Q506 Rosie Cooper: Dr Mumford, do you have any comments about the standard of provision?
Dr Mumford: Yes, absolutely. I have visited some superb residential homes in this country, and I have also visited some dreadful ones, so on a statement about them being the worst in Europe, I wouldn’t be able to answer totally. But I do think that there are some places in Europe where, for example, there is multiple occupancy in care homes. In the UK, that isn’t the case, and that is something that we should hold on to-having a personal room for residents. There are places where we can go that would be worse than the current situation.
However, there are real problems in the residential sector that I have seen-things that do not just relate to internal organisation, which the CSJ thinks needs considerable reform. I would like later to bring the Committee’s attention to a new model that we are particularly enthusiastic about. I have been to homes where 99-year-old men with comorbidity said that they had not seen a GP in two years. Of course, when you are doing research, you are always wondering, "Is this just a one-off, or is this related to more of a trend?" From the work that we have done with the British Geriatric Society and other organisations and homes, particularly in the inner city, this is a problem that we are seeing again and again-GPs are not going into residential and nursing care homes, and residents are suffering as a result. They do not go in because, as one GP who is a medical director of a London borough’s PCT said, they are a "clinical iceberg"-they do not know where to begin and they are not commissioned to do it.
The arrangements we know about, as a result of that, are either that providers cut their losses and pay extra money to the NHS, thus double charging basically-so £10,000 for one afternoon session a week-and that is what produces the best results because you are having the regular presence of a GP, or that they go without and the result is high rates of emergency admission to hospital. There are problems with the residential sector that are internal to it, but there are also problems with the residential sector that relate to the NHS and to the regulatory framework.
Q507 Rosie Cooper: You have just described what is, in essence, paragraph 9 of your evidence. I would say that the fact that you need a defined GP is not only relevant to care homes but to long-term care for patients who are maybe living in housing association or other accommodation. How do you think that changes to social care, but also the NHS reforms, can actually deliver? Looking through changes in GP contracts, if you like, how do you see the problem that you have just outlined addressed in the current climate?
Dr Mumford: We think that the proposed reform-the Health and Social Care Bill-could present opportunities to improve the particular issue of GPs going to care homes. That is because we think that there should be an alignment of single practices to single homes, with opt-out clauses and possibilities for residents who want to remain with their family doctor. That is most likely to happen when it is commissioned by GPs and when GPs see the incentive to do it.
I am not an expert on the frameworks around GP contracts, but we have received evidence from multiple medical directors of PCTs saying that the 2004 contract does not incentivise GPs to work in this context. I know that it is a historical issue in terms of this being a group of people who used to be looked after in hospital and are now looked after in the community, and that transition and that shift has happened over the past 20 years, but we think that it has to be higher up the job agenda for GPs. We think that this could be made possible by GPs being more empowered to act through this Bill.
Q508 Rosie Cooper: Sarah may be able to help a bit with this, but let me just make one final comment. I know of someone who went into a nursing home-a residential home and thereafter a nursing home. They were obliged to change from their family doctor and they were registered with another practice, but when they needed to see a doctor, they saw a different doctor and one who did not read, or did not know, any of the medical history. Every time they visited, the doctor changed all the drugs that the person had been on for 10, 15 or whatever it was years, at a stroke, saying "Oh, they don’t need that now-change this"; and a new doctor comes, saying, "Change that." What you are describing may sound good, but the truth is that, unless there is some continuity even there, people just disregard what has gone before.
Dr Mumford: The transition is a key point but, counter to that, I have seen superb ways of working, for example, in Peterborough, where a GP felt that her practice was failing the local community of residents in nursing and residential homes, as there were multiple doctors going in from different practices. The start was to align one practice to one home; and then you have got a problem about which doctors are within it. Once they had achieved that, which obviously needed a sympathetic PCT which she had in Cambridgeshire, then she-this is Dr Gillie Evans, whose case study is noted in Age of Opportunity-realised that she needed to lead by example and take the most difficult specialist nursing home, and she would be the doctor who went in there every week. Other of her GP colleagues went in and looked after the other care homes. The point there about the transition was that the handover from the nurses is dramatically improved. She was able to introduce syringe drivers, so the specialist nursing home is basically a hospice in this context.
What we think is that you can find excellent models of best practice, and I am sure that the Committee has heard lots-or perhaps few-
Chair: We have heard some.
Dr Mumford: There is structurally something whereby this could become rolled out on a more widespread basis. We think that that might be possible in the new reforms.
I will go back to your direct question, Ms Cooper, on the issue of what happens if you transition from a family doctor whom you love to a new practice that looks after that particular home, which you do not know anything about. We think that you could have an opt-out to stay with the family doctor, as long as the family doctor behaves differently from how the majority of GPs in this country behave in relation to their residents in care homes. I say the majority, because there are excellent examples of family doctors who do not, but I think that is how it could be solved.
David Orr: A rider to that: for us, one of the key questions about the Bill that is presently being debated, and about GP commissioning, is the extent to which it solves the existing problem of lack of access to GPs for people whom you might describe as being deeply excluded. This is a major problem at present. People who are homeless find it very difficult to access GP services and, as a result, they make hugely disproportionate and very expensive use of hospital services. A whole range of other people find it difficult, just on a day-to-day basis, to access GP services. If we are to start from an assumption that the best way of keeping the nation healthy is by preventing illness and by being able to intervene at the earliest possible time, this is an issue that has to be resolved.
Q509 Valerie Vaz: Can I just add something slightly different? Most of the debate has been about the fact that there will be a demographic change and lots of elderly, and about how we get them to pay for it because they own these houses. I do not know whether either of you has statistics about how many people we are actually talking about who live in these houses who can pay for their care. You mentioned that half are over 60 in housing associations. Do you have any figures for that?
David Orr: People who are living in housing associations are renting their homes in the huge majority of cases.
Q510 Valerie Vaz: Exactly. So my point is that they are still going to be an issue.
David Orr: They do not have the capital asset of a home to move back to. The issue about how care, of whatever kind, for those people is paid for is an acute one, because for owner-occupiers it may be an unpalatable possibility but at least there may be equity in their homes that they can use. People who are renting do not have that. Unless they have savings built up, they do not have the mechanism to pay for their care.
Although the Dilnot report has had a range of different responses, one of the things that seemed to us to be sensible about it was that if you are to create a new system that depends to any extent on insurance, there has to be a mechanism for limiting the overall exposure of the insurers. That is what Dilnot does, and it seems to us that at least that mechanism is worth exploring further.
We also believe that it is possible to explore equity-release schemes for people who do have equity in their homes. One of the mechanisms might be for homes to be sold to housing associations, thereby releasing the equity and allowing the person to continue to live in their own home. It seems to me that if we are to resolve this conundrum, we absolutely have to have every option still available and not have closed down options in the discussion about how we pay for social care.
Chair: The question is around the statistics of the number of people in housing associations or in care homes?
Q511 Valerie Vaz: The problem is that the debate seems to be about how we get the elderly people to pay for it. Now there is a chance to have a much wider debate about how we treat our elderly, and this is a chance for everyone to come in. We do not see them just as bed blockers, and consider how they pay for it and how we save money. If we solve the problem of how we treat our elderly in society, perhaps we can all have a dialogue-you included, because I think you have an important role with housing-but we are looking at two different types of thing. We are looking at not only people who own their home, but people who cannot afford to pay for it and still need social care and what mechanisms exist. I will come on to your Green House.
Dr Mumford: We know that about 260,000 old people in this country, of a total of 400,000, live in nursing and residential facilities. The self-paid there would be, if my maths is correct, 140,000. Although the political attention is welcome and it seems that a consensus is forming, the Centre for Social Justice’s particular concern about the Dilnot proposals is how you drive up quality and increase funding for the group of people who already exist in a means-tested system and do not have capital.
When Lord Warner talks about driving up quality by increasing the pot of money, we question whether you would drive up quality, because, as well as increasing the pot, you are increasing the number of people who are drawing upon that pot. You would be bringing on to the books a whole new group of people who are home owners, preserving their capital and the inheritances of their children. It is not as simple as dismissing their concerns, because it is a tragedy to lose all your assets to pay for care, but we do not think it is the only tragedy of later life. Our concern as an organisation is for the very poorest. We have a means-tested system as a result of 1948. There is so much attention on abuse in care homes and nursing standards. Older people’s health and social care issues seem to be on the front pages every single day of 2012, and we are concerned that by pinning all the hopes of reform on a cap for what people with housing wealth pay is not going to solve the fundamental problem that the poorest face.
Q512 Valerie Vaz: Which brings me on to the future. You have seen the past, the present and the future: could you describe this new model that you have seen?
Dr Mumford: As part of our review, we conducted an international visit to the United States to see a model of nursing care-this is an important point-that is residential, like a nursing home. The model was invented by Dr Bill Thomas. It is not just a brainchild; it actually exists. There are 127 Green Houses in the US with 250 in development. Based on the assumption that, even if we get much better at providing care in the community, which I know Mr Orr has been speaking about for 20 years-that has to happen and our report gives a lot of attention to that-the prognosis for dementia and clinical dependency, and the consensus that at some point it becomes difficult to look after a clinically dependent older person in their own home, means that the need for intense-care settings is not going to go away. The need for care homes is not going to go away, so for all the policy attention to be focused on keeping people in their own home for longer misses possibilities for reform of the long-term care setting. Thus it becomes absolutely vital that we dream a different future for residential care, particularly nursing care. The Green House model presents a new way of doing that, and the innovation lies in two things.
First, the reform of design. These Green Houses are self-contained buildings for nine to 12 people with about two staff members looking after each home. Their kitchen is not downstairs or siphoned off but is actually at the heart of the home. There are no clinical corridors and the rooms are off the central area. The design is half of it. The second half of the innovation is around the staffing ethos. Basically, by cutting out middle management, the key thought is this: the staff in the care home context are bigger than the roles that they have.
By empowering the staff to actually take responsibility for the way that that particular Green House is run, and by also allowing them to take charge of cooking the meals and doing the laundry, you make huge staffing efficiencies, so that there is not actually any more hour per resident in terms of the staff labour cost, but it is for the same cost. They have seen extraordinary results from what they have achieved because of these two dramatic innovations at the heart of this new form of care. As I said, this is not just a bright idea. It is being backed and rolled out across the US.
Q513 Barbara Keeley: You said "nursing care". Where is the medical element of that?
Dr Mumford: The medical element is the two care staff-for reasons that I will not go into they are called "shahbaz". They basically want to create a new word, because they think it is demeaning as a job role in western societies. You have two of those for the eight to 12 people. Because you have a number of those different homes in the same place, even though each is run differently, for each of the two homes you also have one nurse attached who would be going from those two homes, and so the nursing element is there and is crucial. For us, the recommendation that goes along with new models and allowing for new models to take place and reform of long-term care, and dreaming a different future for it, is around the regulation.
At the moment, nurses have to be on site in nursing homes. We already made a recommendation in "Age of Opportunity" around a consensus forming that the distinction between residential and nursing is becoming spurious, because the clinical profile of people in residential is coming to resemble that of the people in nursing homes. Therefore we think that the nursing money that the NHS allocates to people in nursing homes should be allowed to follow the patient or resident into residential homes. That means you have to decouple it from a requirement that there be nurses on site in nursing homes, because you would not expect all residential homes to have nurses, which means we need a new role of nursing from that which, obviously, is current. Basically, that would mean changing the law-a regulatory change to allow there to be new models of doing this.
Q514 Barbara Keeley: I wouldn’t disagree with the vision that you have described for care homes, but it seems to me about a million miles away from the reality of where we are in terms of funding. Some £1 billion has gone out of adult social care funding over the last year, and more cuts are expected this year and next year. Care homes are struggling to even survive, and self-funders are carrying the burden. Although it is optimistic and a good idea to have such visions, where on earth will the funding come from to make this sort of thing happen? As I understand it, care home owners are struggling now. We have had the Southern Cross business of 750 care homes changing hands. We have a crisis going on. Although it is praiseworthy to have these sorts of visions, surely, in the current funding environment, you cannot imagine that there will be the funding to do this. Who on earth will embark on something as optimistic as this, with very small numbers, when they are struggling to maintain care homes at larger units?
Dr Mumford: The key point about this is revenue, not capital. In terms of revenue, you would be right to raise a concern if on a revenue basis Green Houses were shown to be more expensive to run.
Q515 Barbara Keeley: You can’t even design something as different as this on the current resources. What I am saying is that it is such a struggle to keep current care homes going, I cannot see a new model evolving unless some funding were found for it. Are you suggesting that the Government should fund the development of the new small homes?
Dr Mumford: Okay. I will answer the question about the capital cost. Yes, it would require redesigning. We think that there are possibilities through the Homes and Communities Agency and through the way that central Government work to incentivise local provision. We think that that could be a possibility. I have seen cases across the country where sheltered homes have been retrofitted into extra-care housing, for example. That would be something where that as well as retrofitting to extra-care housing, retrofitting to Green Houses could be a possibility.
I really think that the key point is the revenue. If it were shown that the running of it-with the downward deflation on pricing by social services departments-was much more expensive, there would be a real force in this current environment of how we could possibly think of new models that may be better but a lot more expensive. I draw the Committee’s attention to a peer review journal of the American Geriatric Society. It has written up the costing implications of the Green House model. I would be happy to supply this as a note to the Chairman. It actually shows that it is not more expensive to run them, because you are redesigning where staff and labour cost is allocated. You are basically getting much more face-to-face contact between the care workers in the Green Houses and the residents, because it is a smaller context. You are taking out the middle management.
For example, if you calculate that an average nursing home bed in the UK costs £650 a week and, therefore, £2,800 a month, which is say $4,000, that sits right in the ballpark of where the reimbursement for the Green Houses comes from, because half of all people in Green Houses are on Medicaid. It is state reimbursement money that they are looking for. It is non-profit. It is looking for the kind of people who would be provided by the state in a different way that the US states do it. It is not an upper end brass and glass provision, which is really the key point for thinking about why this could be relevant to our context.
Q516 Chair: If we had a more flexible system, we could probably look at extra care housing that would be significantly less costly in terms of the public revenue that would be required. Instead of having three or four classifications, we would have a continuum of different models of care that were more appropriate to individual sets of circumstances?
David Orr: Which is precisely what we need. A lot of that is covered in a publication that we produced last year, called "Breaking the Mould". If you haven’t already seen it, please take a copy. I can circulate others. It covers quite a wide range of ideas. Some of it envisages the future happening now. We just have to be clear about the funding challenges that there are.
Like it or not, the Homes and Communities Agency’s capital funding is two thirds down on what it was in the last comprehensive review period. It meant that the mechanisms by which housing associations produce new homes are based on revenue subsidy, higher rents and more housing benefit. That will not work for capital investment in specialist residential accommodation.
The incidence of new specialist residential accommodation in the present framework is miniscule, partly because the capital is not there, but partly because no one is confident about the revenue funding being there to support specialist capital provision. We have to be very thoughtful about how we make this whole system as flexible as it possibly can be. Dr Mumford’s idea is potentially worth further exploring, but it is about having a wide range. We call it "Breaking the Mould", because we have to think differently about how we do it, and I hope that there are some useful examples.
Q517 Grahame M. Morris: While you are on this issue, one aspect of Dilnot is capping living costs of between £7,000 and £10,000 a year, which has revenue implications. What is your view on the downside of that aspect of Dilnot’s findings?
David Orr: Honestly? We have to see Dilnot as the start of a negotiation. If you accept the basic principle, you have to get drilling down into what numbers will work and what numbers will not work. In many cases, those will be sensible. But people’s needs change, so how do you assess what constitutes a housing cost, a support cost and a care cost? That was really what the Supporting People fund tried and, in the main, successfully delivered in doing. The Government have protected that, but because of the exigencies of local government at present, the amount that has gone into local government is not coming out for the provision of new, supported housing.
Some 75% of our members who are in this business say that they expect cuts of 12% or more. Nearly half reckon more than 20%. There are some local authorities cutting by 40%. Provision is going, and the way that commissioning is working means that there is an expectation that costs will be squeezed and squeezed. That is happening to the extent that one or two housing associations, which care about the standard of living of the people whom they employ as well as about the care that they can provide, are saying, "We are not going to do this any longer, because we think it is taking us to a place where we cannot provide to the level that we want." We have to think very carefully about the consequences of some of the squeeze that is happening at the moment and see if we can think creatively about different ways of funding it. If we are ever to get insurance in, you need to have a cap on the exposure to the insurers. That’s where Dilnot is right.
Q518 Dr Wollaston: I want to touch on a couple of things. First, to Dr Mumford, does the level of dependency in these Green Houses reflect the level of dependency that we see in nursing homes in the UK? It strikes me that the staffing model means that their staff are doing effectively what carers do in the UK-they are doing the shopping, the cooking, the cleaning and the caring. But if you’ve got only two for a ratio of up to nine residents, that is presumably not going to be effective if they have got high levels of dependency. In other words, is what you are classifying as nursing dependency equivalent to what would be nursing dependency in this country?
Dr Mumford: I would be happy to find more of the evidence base around the profile, but yes, it is the same clinical dependency profile. When I visited Albany in the state of New York, the Green House I visited there sat alongside what the American term for our residential is, which is assisted living. Those two facilities sat alongside each other, and it was very obvious that, having seen the difference between some of the self-payers, for example, in the care home that I volunteer in, in London, and nursing home patients-in this country, the difference is merging-the self-payers in that context, in a residential home, are very different from the nursing home patients in a UK context. That difference was similar to the difference between assisted living and the Green Houses. The assisted living was that there would be high rates of dementia, but in terms of other things, in other levels of clinical dependency, some of the people in the Green Houses were really dependent. Again, on the concentration of staff there, of those shahbazim, by increasing the time spent-it is a smaller context, and it is how they feel that succeed in that-they would be the first to stress that they are dealing for a typical nursing home population group.
Q519 Dr Wollaston: Thank you for that. Coming back to David Orr, can I ask what the under-occupation rate is in housing associations? I wonder whether one of the models for funding the higher quality of housing needed is to persuade people to vacate under-occupied properties, so that those with larger families can be housed. Is that one of the models that it relies on, or do you think that we need to return to a previous funding model of capital funding?
David Orr: First, I think we have to think quite carefully about the nature of the offer that will persuade people that they want to move from what has been their family home. At present there are many people living in three or four-bedroom homes who are resistant to moving, because they have lived there for the past 30 years there and their children have grown up-all the reasons that people become attached to a place, all the memories and all the rest of it. Our response to that has tended to be to offer poor quality, one-bedroom accommodation. People are resistant to moving to that.
What we ought to be doing is offering high quality accommodation of at least two bedrooms, so that the grandchildren can come and so that there is an offer that says, "This will improve, rather than diminish your quality of life." We have not been very good at thinking about releasing the capacity by improving the offer that we make to people to move out of those properties. There are a number of organisations, particularly housing associations, that are doing everything they can to make the process of moving as easy and straightforward as they can, saying, "We will sort it all out for you. We will provide the moving. We will do everything that we can. We will pay for all of that." Many people like and welcome that.
We know that when people have the opportunity to move into high-quality accommodation in extra care or a retirement village or whatever, they are very happy with what they have moved to. The concern is that they are being pushed into a small, one-bedroom place and "I’m not going to go" is the response that you get. There is capacity, but we have to think about it in a way that does not lead to the individual or the couple concerned feeling that they are being penalised for becoming old.
Q520 Dr Wollaston: Are there some examples of this where it is happening much better in some parts of the country than others?
David Orr: Yes. We can provide you with some examples of where that is happening.
Q521 Dr Wollaston: How do they fund it? Why are some areas successful and other areas unsuccessful?
David Orr: This is a complicated business to do with the way in which housing associations and local authorities debate the use of the existing housing stock. If you have a local authority that always wants to ensure that as soon as a vacancy arises, someone is moved in from the waiting list into that vacancy, it is very difficult to have the kind of flexibility that we want to see, where, when a vacancy arises, they would think, "Who in our existing stock would this vacancy most suit and, then, can we move someone else? Could we use a vacancy to create a chain of three, four or five different moves that benefit a whole lot of different people?" At the end of that, you could say, "Here is the vacancy that we can refer back to the waiting list." The tendency is that they go straight to the waiting list and the local authority says, "Right, it is a two-bedroom flat, so we will allocate that to a couple and a child." We have talked about flexibility in this a lot. Flexibility is absolutely the key in dealing with all of this. People have to have the ability to manage the estate much more flexibly than has been the case.
Q522 David Tredinnick: I want to change the subject slightly and talk about home adaptations, which touches on something that you said earlier about grab bars. I have a couple of questions. To what extent are local authorities and the National Health Service pooling budgets to create home adaptation services to support those who want to stay in their own home?
David Orr: Not enough, I would say. There is a degree of frustration out there, which you referred to earlier, Ms Cooper, at how simple and straightforward it ought to be, but how difficult it is to get the OT visit to get the process under way, which allows the assessment to be carried out and then allows the investment to be made.
Q523 David Tredinnick: So, to go back to your earlier point, is this where you see the Health and Wellbeing Boards coming in with new ideas?
David Orr: This is a possible place. It is the kind of subject that may be part of the discussion at a slightly more strategic level. Again, there are one or two examples of places where this whole process works extremely well. We can provide evidence of those for the Committee. Part of the reason for the frustration is that everybody looks at it and thinks, "It really needn’t be this difficult. Why is it so difficult to organise this?" Sometimes it is something as basic and straightforward as the money being there, but because the rules said that you have to have an OT and you cannot get the OT for a year and a half, nothing happens. That is the kind of thing that we have to get past.
Q524 David Tredinnick: Last question. When the Committee went to Carlisle, we were shown some brochures about colour coding of homes where doors had been painted red and plates bright blue and other simple striking colour schemes used to help patients-perhaps, residents, I should say-find their way around the home. I was thinking about what you were saying about grab bars earlier on. This is really a development of the grab-bar theory. It is incredibly simple and it appeared, from what I heard, that it enabled people to move around their home safely and thereby stay in residence, rather than in hospital, for a longer period of time for a minimal cost.
David Orr: That is absolutely right. Both inside the property and where people are living in extra care or retirement villages or whatever, the incidence is growing of colour coding of floors and making it easy for people to navigate their way around. The level of learning and expertise on that is growing rapidly. Certainly what I see is that every extra care facility that is now being built will have that thinking as part of the design. I think there is real progress happening there.
Q525 Dr Poulter: I want to pick up on some of the issues you have raised about local authorities. You say that some local authorities do things well but there is also a concern about the intransigent attitudes that may exist in some local authorities. We have talked about Health and Wellbeing Boards but how would you like to see those attitudes broken down? What mechanisms could be put in place?
David Orr: Let me start by being generous and saying that I think local authorities are under enormous pressure at the moment. The range of demands that are being made of them at the same time as they are having to make significant cuts to their spending has put them under considerable pressure. Some of the consequences of that are about a degree of entrenchment-people wanting to hold on to and protect what they need. This question, not just in local authorities, it is true in housing associations, the health service and elsewhere, always comes down to local leadership and the extent to which, at a local level, people are prepared to share. Community budgeting: we ought to be seeing more of that. It is a mechanism that works. We know that it works. I know the terminology keeps changing but I am referring to the kind of total place thinking that says, "Let’s look at this place as a whole and try to work out how we can invest in it in a way that makes the most sense."
Q526 Dr Poulter: That is a good point, but nevertheless having an acceptance-some members of the Committee agree fully with what you said-that housing and having housing that is fit for purpose, adaptable and future-proofed as well, to support people as they grow older is an essential part of preventive health care and good social care. That is the point that you made. But that is not a view that is widely realised by local authorities in general and by the NHS in getting it to happen on the ground. You have the Department of Health on the one side and the Department for Communities and Local Government on the other. But this issue, because it is housing, perhaps sits in governmental terms with the DCLG. Is there anything you could say in terms of pushing this agenda forward either at a local level or a national level that would be useful in terms of raising that awareness about holistic and preventive care?
David Orr: Practical things-there is a whole of lot of land sitting there that is capable of being built on, which would help to ease the housing crisis and, if it was health service or local authority land that we were building on, there is a huge amount of willingness in housing associations and elsewhere to talk about what is most needed. The experience of housing associations talking to the health service about their land is: "We want you to build things that work for the health service but we are going to sell you the land at top dollar because we need the money as well." That is not a sensible starting point for negotiation. A lot of this operational stuff at a local level, yes, it does depend on the quality of local leadership, but there is not a strategic environment that nurtures the idea that we do this best if health, housing and social care are part of the same conversation at the same table as a matter of course.
Q527 Dr Poulter: How would you create that strategic environment? That is what I am trying to drive at. What would you do, what would you say, what could be done to create that? Obviously, talking about partnership-
David Orr: We have suggested that the Bill should have a requirement that there is a housing voice on Health and Wellbeing Boards; that there should be a housing needs assessment as part of the health assessment. You cannot look at how someone’s overall health is going to be managed unless you are clear that there is a safe and secure home for them to live in. We think that you can write that into the legislation; not writing in the outcomes but the mechanisms that ensure that at least the conversation is required to take place.
Q528 Dr Poulter: One final question. We obviously have unitary authorities and we have other set-ups such as two-tier authorities. Health and Wellbeing Boards are to be run by the upper-tier authority, obviously by the unitary authority, but where there are two tiers of local authorities, the lower tier does not run the Health and Wellbeing Boards but is actually responsible primarily for housing and housing associations as well. Is that of concern to you in this context?
David Orr: Yes, I think it is. I think two-tier local government is quite often something of an inhibitor of effective communication. Because, if you are a housing association having to engage at both tiers and you are engaged in housing and support then the housing is in one local authority-district council-and the support and whole discussion about care is at a county level. That is already something of a complicating factor. How the Health and Wellbeing Boards are constructed means that they will be at the upper tier of local government and I think that is probably right. That is the scale it needs to happen at.
I was intrigued by the way you phrased the question, when you said that it would be the upper-tier level that runs the Health and Wellbeing Boards. I hope they will see their job as hosting the Health and Wellbeing Boards and making sure they run themselves. I think this is part of the difficulty. If local government believes that it owns and is therefore responsible for all of the outcomes of the Health and Wellbeing Boards, they will not be as effective as where local government says, "This is a mechanism by which we bring a range of people together to come up with some solutions."
Chair: On that note, I am going to say thank you very much for your evidence and contribution. You have given us plenty of food for thought.