§ Motion made, and Question proposed, That this House do now adjourn.—[Ms Bridget Prentice.]
§ 10.2 pm
§ Mr. Tony McWalter (Hemel Hempstead)As often happens with Adjournment debates, constituents initiated this debate—in this case, the family of a woman with dementia. However, this issue became my preferred topic for a debate not because of a constituent but because of the remarks of two Ministers, one for education and the other for local government. They made it clear that there will be continuing, welcome increases in the resources vouchsafed for education, but they also suggested that there will be a continuing squeeze on the total resources that local authorities can expect to spend. The implication of both those statements for a service that is not educational and is grossly underfunded is that it will have to persist with a resource level not very different from what it currently receives. That has certainly happened with social services.
In my area, Hertfordshire, because, ironically, improving prosperity has resulted in a boom in house and land prices, the prospect of a person with dementia getting the package of care that they need is no different from what it was when the Government took office in 1997. The closure of care homes, as well as full employment and the need for people to earn more money than would normally be paid to someone working with dementia patients, mean that it is difficult indeed to find staff to look after people in residential homes. I know that the Government's good intentions have never been in question, and there have been many initiatives designed to repair one bit of the system or another. The national service framework for older people, for instance, published in 2001 and regularly updated, shows that much new investment in health will unquestionably be directed at improving the condition of older people. However, most of the needs of someone with dementia, whether in a mild, intermediate or severe form, are categorised not as health needs but as needs for social care. The regime for social care varies throughout the country, but throughout England and Wales, while those who work in the field do so with dedication and determination, as far as sufferers and their carers are concerned, the regime is unresponsive, harsh and unyielding. One has only to contrast the stories that one hears from constituents about how wonderful the health service has been with those that one hears about the terrible problems that they have had with social services to feel that those harsh remarks are justified.
If dementia is a cruel illness, we owe those who suffer from it and those who try to care for them a high degree of consideration and kindness. What happens instead is that, sadly, we look at these matters from an entirely economic perspective. Governments begin with the thought that an adequate system would be dreadfully expensive, and then devise ways of saving money, often without any real attention to the fact that this cruel illness is made a great deal more savage because we fail to apply normal political intelligence to it.
144 This debate has two themes: resources and morality. I shall spend more time on resources than ethics, but I want to reflect on how those with dementia and their carers are dealt with. In a sense, it does not matter whether the Government point to 50 initiatives or 500 or whether they tell me that they have increased resources by 50 per cent. or 100 per cent. What one needs to do is focus on the lived experience of those touched by the cruelty of dementia, and the experience of those who love them and want them to have their pain, bewilderment or loss attenuated. Those who love and care for those with dementia want their own exhaustion, sense of grief and loss, fear and emotional needs to be given proper consideration, but the experience of people now facing this problem in their lives is terrible in most cases. They are categorised as having not a health need, but a need for social care and support, and that system is scandalously complex, economically punitive and shamefully unresponsive.
We know that the Government accept that the consequences of dementia could be attenuated—even the most recent communication on the national service framework for older people, dated 25 September this year, makes that point—but what comes over time and again is the need for a national strategy on dementia. To expect each local authority to cope as best it can, each with a different history and philosophy and a different resource base, is to assume that muddling through is, for the most part, the best that can be done. It is not.
I speak of these matters with some passion because I think that, in part, people with dementia are seen only as a problem and not as having a continuing contribution to make to the quality of our lives. Perhaps I can mention my own case. Shortly after I first met a lad called Jack, then aged five, we were in a home for people with dementia where he was visiting his great aunt Ruth. I was struck by how the residents responded to him as he chatted to them and played with his toys, as well as by the way in which this child dealt with each of these people as a friend. The gentleness of Jack's mother and her consideration for her aunt Ruth were striking. It was clear that she had visited the home on many occasions and that residents looked forward to her visits. Jack's mother became my wife and he became my stepson. He is now 6 ft 2 in tall and at university, and I still think that the people in that home had a strong and positive formative influence on him, as they did on me and his mum.
If that story sounds a little too personal, it is not unusual. Currently featured in "EastEnders"—so it must be a common occurrence—is a storyline in which Kat will finally realise that Alfie is the man for her because she can see in him a considerateness for his gran, who appears to have dementia, that her rich beau would never display—at least I hope that is how it will work out.
People with dementia are part of society, and the way in which we treat them in part defines who we are. The home that I mentioned was a private home with very large fees, and most people could not think of being helped there. The care that most people receive is a great deal less effective than that which was given to my adopted aunt Ruth.
145 In our society, we claim to have built consideration for those with dementia into the governmental system, but of course there is no single system. Central Government delegate it to local authorities, but then say that they are expected to spend a standard amount on social services. Local authorities never treat reviewing the standard spending assessment—SSA—as a priority; most who have that responsibility spend well above their SSA for social services because they are humane, but they know that the service that they provide falls pitifully short of being able to hear a cry of pain and to respond to it appropriately.
Dementia has many forms—some milder, some more pronounced and some extreme—but for many sufferers, and for all if they live long enough, the final solution is to live in a residential home, probably for the rest of their natural life. In Hertfordshire, the amount of money that the county council pays for someone who is reliant on public resources falls far short of what care home providers think appropriate. SPAIN—the Social Policy Ageing Information Network, a conjunction of various bodies that do work in this area—suggests that it is about £85 short per patient per week. The county has done its best, but last year, after hard negotiations, it had to agree a 7.9 per cent. increase in the rate that it pays for residential care, although the Government were, yet again, expecting a settlement well below that figure.
Even at that level, many operators of residential homes try hard to close them down, because the land that then becomes available is so valuable that they can secure their own economic circumstances and retirement by selling it. People from Hertfordshire are living in homes hundreds of miles away in Wales, the Isle of Wight and Liverpool—although, Mr. Speaker, I have heard no cases of them being sent to Glasgow, so we are at least that humane. Splitting families up in that way has a devastating effect on people. That is the reality behind the national service framework claim that
There are serious shortages of suitable care homes in some areas…and few local authorities have yet developed sufficient services to help people with dementia continue living at home.Those are the Government's own words.Once someone is in a home, there is a continuing squeeze on money. If they are in a private home and have to subsidise it out of their own family resources, there is always the prospect that they may end up living so long that they have to move from a place that is comfortable, and where they have a more manageable existence, to a place where they know no one and their circumstances are decidedly less commodious. Caring families facing the prospect of their relatives having to make such a move, or people facing dire economic consequences for themselves if they try to hang on, are presented with an invidious choice.
What makes residents of a comfortable home insecure, and what makes it so difficult for families to find a place for their relative with dementia, is the spectre of what counts as health care and what counts as social care. For example, health care assistants count, paradoxically, as social carers. A Kafkaesque labyrinth of funding complexity is involved when they are employed. That results in lengthy delays in the appropriate resources that are eventually allocated to people with the illness.
146 I have a constituent whose niece is willing to help with her social care. That includes helping her to clean herself after she has excreted. What would be the health consequences if she did not have such help? Help with the preparation of food is social care, but how costly is it to cope with the health needs of someone who is malnourished? Of course, looking after elderly people with dementia is demanding and it is not surprising that many vacancies remain unfilled, given the low wages and career development prospects.
Sadly, one way in which people sometimes cope is through the prescription of neuroleptic drugs. The use of such drugs has escalated to the point where many people with the complaint no longer have the quality of life that my adopted aunt Ruth enjoyed nearly till her death.
I thank the Alzheimer's Society and Andrew Chidgey for their help in preparing for the debate. I conclude by quoting the words of the Social Policy Ageing Information Network, which is composed of many of the charities that deal with such matters. Its report concludes:
We urge the Government to act decisively to bring social care for older people into line with the ambitious programme for the NHS. The good intentions are there, the resources to carry them through are not.Piecemeal measures",which include amounts of £300 million to patch up some parts of the system,are not enough—they merely serve to divert the pressures from one part of the system to another. What is needed is a fundamental review of funding for older people across the whole spectrum of social care. Without such a boost, neither older people's needs nor the Government's modernisation objectives for the NHS"—let alone the needs of those with dementia—"can be met.
§ The Parliamentary Under-Secretary of State for Health (Dr. Stephen Ladyman)I congratulate my hon. Friend the Member for Hemel Hempstead (Mr. McWalter) on securing the opportunity to debate this important issue. However, I cannot possibly agree with his comments about Glasgow. Having lived there for several years, I must leap to the defence of that fair city. If that ensures that I am called promptly in future debates, that is even better.
My hon. Friend described some of the problems that face people with dementia and their carers. Dementia can doubtless have a dramatic effect on individuals, their families and friends. My hon. Friend is right to take the matter seriously and raise it in the House.
Debates such as this are bound to concentrate on what is going wrong. I should therefore like to start by saying that a great deal is going right as regards how we care for people with dementia. It is important to put that into context, because about 600,000 people in this country have dementia in various degrees of seriousness. When dementia is diagnosed, it is important that the individual and the family approach it as far as possible with a positive outlook. That is difficult if we give the impression that it is awful for everybody all the time. 147 Many people have a high quality of life for many years because the disease progresses relatively slowly in some cases.
§ Lady Hermon (North Down)Will the Minister give way?
§ Dr. LadymanI shall in a moment, once I have made some progress.
Some of the care and support comes from people's families and friends, who work tirelessly to ensure that partners, parents and neighbours are cared for in the best possible way. However, the statutory and voluntary sectors provide much support. They increasingly provide a range of person-centred services. The statutory and voluntary sectors also provide a range of support services to enable carers to continue caring.
§ Lady HermonI am most grateful to the Minister for taking this intervention. I had not intended to intervene, particularly in another hon. Member's Adjournment debate. As the wife of a dear husband who has only recently been diagnosed with Alzheimer's, I urge the Minister to consider the fact that, somehow, GPs should look much more closely at the symptoms. I went to our GP five years ago, but my dear husband was diagnosed only last year. With the greatest respect to the Minister, he can tell me how much is being done now, but early diagnosis would have helped my husband and our two children a great deal.
§ Dr. LadymanFirst, may I offer my sympathy to the hon. Lady and my best wishes to her husband? I entirely agree that, if we can diagnose these conditions and begin to manage the problem much earlier, it is often much easier to deal with the matter. Early diagnosis and early intervention in long-term conditions can often be key to their proper management, and I am sorry that that has not happened in her case.
The point that I was making was that many people who have been diagnosed with dementia can have many happy, quality years of life before the condition becomes serious. If there is a positive aspect to the situation, it is that people in the hon. Lady's situation should be aware of that. A story that I often tell is that it is reputed that, not that many years ago, one of our own Prime Ministers was diagnosed as having dementia while still living at No. 10 Downing street, and stayed there and ran the country for a year or so after he had received the diagnosis. It is important, therefore, that we put this into perspective. Such a diagnosis is not an immediate death sentence, and we need to manage the condition as positively as we possibly can. I think that that was probably the thrust of the argument of my hon. Friend the Member for Hemel Hempstead. There is a great deal of quality of life to be drawn from even the most difficult of situations.
Let me give an example. Hon. Members might have heard of the Jackdawe scheme, a specialist home care service in Nottingham for people with dementia, which recently won a health and social care award. On average, the people using the service receive 10 hours of care a week, and the care provided is in line with what 148 they need, not with a fixed menu of services. Most people with experience of the service speak of the quality of life of those who are being cared for in the project.
As my hon. Friend intimated, most people do not want to go into a care home, and one of the things that the Government are doing is to look for alternatives to that. We have put a huge amount of money into intensive home care packages for older people, including those with dementia, and many people with dementia can be kept in their own home for a considerable period. About 27,000 more intensive home care packages are in place already.
We can also make available the extra care model of housing, an example of which is Alexandra House in Coventry, which I visited fairly recently. I met a lady with dementia and her husband—who was in his mid-eighties—who was looking after her, living in their own flat in that extra care community. For about a decade, he had done nothing but look after his wife, and that was now taking its toll on him. Because they were living in an extra care facility, however, she was able for the first time to get the care that she needed, and he was able to take a break from caring and to start to lead his own life again. I met him on the day before he was due to start a computer course at the local adult education college, at the age of 87. He was able to leave his wife for the first time in many years because he was confident that she would be looked after when he was out of the house. There are, therefore, many alternatives to care homes, and we must explore them.
My hon. Friend talked about the shortage of care home beds for people with dementia for whom that is the only option. He criticised the Government for leaving the responsibility for that in the hands of local councils, but the reality is that that is where we place the responsibility for judging local capacity. We cannot possibly judge it from Whitehall, because we do not know the situation in his area or in other areas around the country. We therefore put a responsibility on local councils to do that planning, and we have given them adequate resources to do so. My hon. Friend talked about the resources available in his area, and about Hertfordshire's financial position, but since 1997 we have increased by 25 per cent. over and above inflation the funding for personal social services across the country.
My hon. Friend talked about standard spending assessments. Actually, we do not have those any more: we have formula spending shares, which reflect deprivation levels and other local issues, and determine how much each council receives. Councils are, however, supposed to top up spending on those services from council tax. That is what council tax is for—to add extra money. We give councils responsibility for judging local needs, and trust them to balance the availability and capacity of services against those needs.
The availability of care home places is also an issue when social services departments are working out how to reduce the number of delayed discharges from acute hospitals. To enable acute beds to be used to maximum effect, Hertfordshire offers patients and their relatives the opportunity to move to the homes of their choice, but in the interim, until a vacancy becomes available, people may have to wait in homes that are not in Hemel 149 Hempstead. That, I think, is the position described by my hon. Friend, in which people find themselves outside their local communities.
Hertfordshire has a block contract for 60 nursing home beds for people suffering from dementia, all of which are in the Hemel Hempstead area. A further 74 beds are contracted with nursing homes in Luton and Harpenden. I am assured that Luton is the furthest area in which people are placed and that, if relatives experience problems visiting the home, the council uses the carers grant to assist them. At least, that is what I am told. If my hon. Friend has evidence to the contrary, I hope he will bring it to my attention, because when councils tell me porky pies I take that seriously. There is also access to 460 residential care home beds for people suffering from dementia who do not require nursing care all—in Hertfordshire.
As I said earlier, the local authority offers choice through the preferred choice option. When people have been placed outside Hertfordshire, they return to the Hemel Hempstead area as soon as there is a suitable vacancy. Some take up that option; others do not.
My hon. Friend mentioned the important issue of carers. Most people with dementia are cared for at home, and we have made extensive efforts to improve support for carers. We shall more than double the money currently given to councils to support carers. It is £100 million this year, £125 million next year, and £185 million by 2006. Councils can use that money to give people short breaks from caring, and to provide them with other help.
Let me stress a point that I always stress when speaking about this subject. We have introduced a regime enabling carers to demand their own assessments. Many carers do not realise that they can go to their local social services departments and demand assessments of their needs. I urge them all to do so.
My hon. Friend mentioned pre-nursing care, personal care and the costs involved. In October 2001 the Government delivered their commitment to bring in free care from registered nurses for people paying all their own nursing home fees. That also applies to people receiving nursing care at home. It ends the anomaly of people having to pay for care in nursing homes that would be provided free in residential accommodation or at home.
The Government recognise that caring for someone with any form or level of dementia often requires the involvement of a registered nurse. The complexity of the problems experienced by sufferers, including behavioural change, means that frequent review and supervision of their care may be needed to maintain 150 their safety, nutrition, personal hygiene and so forth. All those important functions are delivered as part of nursing care, and the national health service now fully funds that care.
As for personal care—described as "social care" by my hon. Friend—in responding to the royal commission on long-term care we decided not to make personal care free for everyone. However, I can tell my hon. Friend that some or all of the personal care costs of almost seven in 10 people are met by the state.
Those whose personal care costs are not met by the state have assets in excess of £19,500. By making that decision, we will be able to redirect an additional £1 billion a year by 2006 into services for everybody. Were we to provide free personal care for such individuals, we would not have as much money to spend on other services. The intensive home care packages, the carers grant, and the so-called access grant, which makes the services available to allow us to keep people in their own home, are all paid for by not making personal care free for people who have significant assets. If we made personal care free for such individuals, all that would disappear—we would be unable to provide that level of support, and all older people, including those with dementia and mental health problems, would suffer as a result.
I put it to my hon. Friend and to you, Mr. Speaker—you have an interest in these matters from the Scottish perspective—that the Government in Scotland came to a different view. They decided to fund personal care for everybody. Now, more people in Scotland than in England are having to enter care homes, and in a few years that divergence will be very dramatic indeed. People in England will start to see the merit of the Government's decision, and I suspect that people in Scotland will start to ask their Government why they took the line they did.
In addition to what I have described is something called NHS continuing care. When an individual's medical needs outweigh their personal care needs, as sometimes happens to people with dementia, they become eligible for NHS continuing care, whereby the NHS pays not only for their nursing care and personal care, but their accommodation costs. That is the third level of care, about which people who engage in this debate often forget. It is true that the ombudsman criticised—
§ The motion having been made after Ten o'clock, and the debate having continued for half an hour, MR. SPEAKER adjourned the House without Question put, pursuant to the Standing Order.
§ Adjourned at twenty-eight minutes to Eleven o'clock.