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1 Apr 2009 : Column 244WH—continued
“The £150 million is revenue, not capital expenditure. It is being made available as part of primary care trusts’...overall general allocations. These are increasing by 5.5 per cent. in each of 2009-10 and 2010-11, a total increase of £8.6 billion over the two years of which the dementia funding is part. PCTs have flexibility over the use of these resources in line with the operating framework.”—[Official Report, 24 February 2009; Vol. 488, c. 640W.]
The operating framework was published with the revenue allocations to which the Minister referred in that answer on 8 December 2008—almost two months before the national dementia strategy was published. It is true that the operating framework mentions dementia as one of the priorities to be determined and set locally by each PCT, but there is nothing like the detailed guidance provided by the strategy. It is clear that the £150 million mentioned in connection with the strategy is, as the hon. Gentleman said, not ring-fenced for delivery. Nor is it impossible that PCTs and local authorities will already have decided their spending plans for the next two years before even having laid eyes on the dementia strategy. If that is so, how can we be sure that the funding necessary to deliver the strategy’s objectives will be available?
In conclusion, I say again that I welcome the strategy and I again congratulate the Government on introducing it. However, none of us can go on simply taking curtain calls for its existence; we must make it a reality and make it work for the people with dementia who need it. I do not doubt the Minister’s commitment to the task or the commitment of those who work with him on it, and nor do I doubt the difficulty of that task. However, I ask him to take this opportunity to deal with the points that I have raised and to use this debate to discuss the next steps in addressing this fundamental challenge, which we are no longer ignoring, but which we are still some way from defeating.
9.52 am
David Taylor (North-West Leicestershire) (Lab/Co-op): It is a pleasure to follow the hon. Member for Rugby and Kenilworth (Jeremy Wright), who is almost a neighbour of mine. He has a long-standing interest in this issue and is always lucid and thoughtful in debates on it. I congratulate him on securing this urgently needed debate at the fourth or fifth time of asking.
As was his custom, Albert Einstein neatly captured the essence of a broader ill in society when he said:
“The intuitive mind is a sacred gift, and the rational mind its faithful servant. We have created a society that honours the servant and has forgotten the gift.”
For a long time, Governments of various colours could be accused of having forgotten the gift. While other terrible diseases, such as cancer and heart disease, have benefited from long-term research funding, the same cannot be said for dementia, and the difference in the improved treatment and understanding of those other diseases is clear.
With the advent of the national dementia strategy, however, there has been some hope of a cogent and coherent plan to tackle this terrible condition, which affects more than 1,000 people on average in the constituency of every one of us in this Chamber and in this House. As the hon. Gentleman rightly said, the strategy is welcome and a huge step forward. We acknowledge that, and its contents are certainly encouraging.
As some hon. Members may be aware, I introduced a ten-minute Bill on the management of dementia in care homes during the previous Session. On work force planning and training, one of its objectives was to make dementia training, including the use of antipsychotics, mandatory for care home staff, because it is not mandatory at the moment. As the hon. Gentleman said, that is shocking, and I will return to the issue later in my contribution.
I would like to spend a few moments talking about the relationship between the national dementia strategy and last year’s carers strategy, which my hon. Friend the Member for Brighton, Pavilion (David Lepper) mentioned in an intervention, before turning to how we can combine them with better training and support for professional carers to ensure that we continue to cherish our cognitive gift, even once dementia has begun its remorseless ravages.
Ultimately, the aim of a national strategy for the treatment and care of dementia patients should be the balanced provision of services, with home care and family support wherever possible, and professional care from suitably trained and qualified carers based on need. Two thirds of dementia patients live at home, with the remaining third in the residential care system. The carers strategy is therefore clearly central to supporting family carers in delivering improvements, and the seventh objective of the national dementia strategy, in which the Government acknowledge the necessity of joint working between the officials responsible for delivering the respective strategies for carers and dementia, is welcome.
Although it is worth noting that carers’ benefits remain untouched by the carers strategy, I welcome carers’ access to more and longer breaks from their duties, the provision of more support by the NHS locally, the extension of the new deal for carers and the
recognition of young carers’ needs. Such things have clear benefits for all carers, and especially those caring for relatives, spouses or friends who are touched by dementia.
However, we must listen rather more closely to carers if we are successfully and effectively to implement the Government’s proposals in the carers strategy. Page 13 of the strategy says that by, by 2018, the Government envisage that
“carers will be universally recognised and valued...Support will be tailored to meet individuals’ needs, enabling carers to maintain a balance between their caring responsibilities and a life outside caring, whilst enabling the person they support to be a full and equal citizen.”
Certain people with dementia are not full and equal citizens now.
Bob Spink: The hon. Gentleman mentions those with dementia being full and equal citizens. Does he support—this is a rather sensitive issue—tags being used with victims of dementia where families want to use them to give their loved ones more freedom and longer and better care in society?
David Taylor: I am grateful for that intervention. Having seen the effect of dementia on constituents’ families and, years ago, on a member of my own family, I think that I would support a limited pilot of something along those lines to check its weaknesses. Superficially, it has some attractions, and I can understand that.
We must listen to carers because, by the Government’s own admission, and as the Alzheimer’s Society has consistently asserted, the present standard of care for dementia patients is distinctly uneven across our land. I repeat that, in pursuing the much-needed reform and improvement of dementia services, we are starting from a much lower base than is the case for diseases such as cancer and cardiovascular diseases.
Let me give a snapshot of present provision in Leicestershire. A number of weaknesses have been identified by constituents caring for spouses or relatives with dementia who have contacted me. Issues include late diagnosis and a lack of information on support and advice for newly diagnosed dementia patients and their carers. I am also concerned that the direct payments scheme for carers may not be as helpful as it could be to those responsible for loved ones with dementia. To take one example, my constituent Derek Barham cares for his wife Maureen, who has advanced dementia, and I know them well because they are friends of mine. He and his wife qualify for direct payments, but they are unable to use cash from this source to pay for a nurse who is qualified to care for dementia patients. Nor can carers who attend under the scheme help the patient with toilet visits or other physical support. The main carer is therefore relieved from their duties only in the sense that they do not have to be in the same room at all times. People in Leicestershire qualifying for direct payments and who care for under-65s with dementia also have problems accessing day centre services, where staff are more likely to have appropriate training in dementia care.
I have written to the Minister about the problems with direct payments that my constituent has identified and I recognise that they may be peculiar to Leicestershire, but I am not sure. However, it is useful to register this
example of the experience of the first round of reform for carers, particularly those caring for people with dementia.
It is equally important to register good local examples of dementia and carer support work. I take this opportunity to pay tribute to the excellent Side by Side project for carers of younger dementia patients. The Alzheimer’s Society, which is doing fantastic work in this area, is undertaking the project in Leicester and Leicestershire. The project explicitly consults and includes the person with dementia in designing a care and support package that they and their carer can access from Side by Side, so that they can continue to lead as normal a life as possible post-diagnosis. I believe that the project could well be rolled out across the country by the Alzheimer’s Society and the aims of the carers strategy and the national dementia strategy will be greatly supported by it.
David Lepper: Will my hon. Friend acknowledge that a huge problem faced by many carers is that they are often the elderly husbands, wives, partners or friends of equally elderly people, and that their age, and sometimes physical infirmity as well, can put additional strain on them in their caring duties? However, they want to care for their loved one.
David Taylor: It is ironic in some ways, but those carers themselves need tender loving care from their wider family and the professionals who exist to give such support. I should like some respite care to be available on a rather greater scale than at present, which would be helpful.
The carers strategy maps out improvements that will support and enhance the role of almost 600,000 family carers in this country who are responsible for the care of spouses or relatives with dementia, but the national dementia strategy commits only to making guidance available to care home staff on best practice in dementia care. I acknowledge that the NDS proposes that care homes nominate a lead member of staff for dementia and that local authorities and PCTs provide in-reach services for residents with dementia. Yet it seems that we have missed an opportunity to bring the level of dementia awareness and treatment in care homes to a decent minimum standard. That should not impede other NDS proposals for care homes, provided that the Care Quality Commission comes into operation with an independent and robust inspection regime for care homes, including scrutiny of the treatment of residents with dementia.
The CQC is born today; this is its first day of operation, and I do not know who the parents are but we should congratulate them, given the track record of CSCI in this context, and the fact that its response to questions in the all-party group’s last inquiry about why the use of antipsychotics was not monitored for effectiveness and appropriateness was, to paraphrase, “Not me, guv.” It seems obvious to many that training residential staff in dementia care would help to ease the difficult transition from home to residential care that thousands of individuals and their families and carers face every year.
The idea that we must raise standards of care in residential homes for dementia patients is borne out by last month’s Laing and Buisson survey of the UK
private care home market. It found that a third of care homes allegedly specialising in dementia—according to their notepaper and the notice boards outside—do not provide their staff with dementia care training. That is illogical and unacceptable. That lack of specialist training in dementia is extraordinarily lax and a further illustration of the dangers of dogmatically introducing the free market into long-term care, rather than providing a minimum standard of care for all, whether in public or private residential accommodation. Two thirds of care home residents have dementia. That figure needs to be repeated time after time. The dementia population is likely to double over the next 20 years and the majority of long-term care placements are due to dementia. Yet still care homes advertise themselves as specialists and are not required or inclined to train their staff in how to treat residents suffering from that terrible disease.
We must also remove the threat to dementia sufferers in residential care of the inappropriate prescribing of anti-psychotic drugs, which the hon. Member for Rugby and Kenilworth mentioned in his opening remarks, and which unnecessarily blights the lives of more than 100,000 people. That number of people would fill the new Wembley stadium; that is how many care home residents are receiving inappropriate medication to quieten down symptoms that could be tackled in non-pharmacological ways. That is a disgrace. In my ten-minute Bill of 14 May last year, I highlighted the key factors in ending that medically crude and socially unjust practice; those factors must be the regulation of the use of those powerful drugs in residential settings, and mandatory training in dementia for all care home staff.
Like the hon. Gentleman, whom I will call my hon. Friend in the present context, and, I am sure, our fellow members of the all-party group on dementia, I am disappointed that our inquiry and subsequent report into the widespread use of anti-psychotic drugs in treating dementia sufferers living in care homes, entitled “Always a last resort”, has not yet helped to persuade the Government to make specific provision within the NDS for an end to inappropriate prescribing. The Alzheimer’s Society and the Royal College of Nursing, among others, state that the use of anti-psychotic drugs for residents whose behaviour is defined as challenging, or who are suspected of being capable of challenging behaviour, accelerates the cognitive decline of the patient and increases the risk of cardiovascular disorders. That is the dreadful factor in this. It may make things easier for staff and less distressing for other residents, but that is the fact. The practice can only accelerate the decline of dementia patients and, as such, should be addressed in prohibitive terms by the NDS.
We await with interest the publication of the review of anti-psychotic drugs this spring, although I am not sure when spring is; it technically starts on 20 March, does it not? Might it run until late September? Who knows? We must look in the Government’s lexicon of terms. It is a source of concern that that work is separate from and later than the NDS itself. Perhaps the Minister will include this matter in his reply.
The population of dementia sufferers will be close to l million by 2025 and the Government acknowledge that the pace of implementation of the NDS will vary across the United Kingdom. In five years’ time, after the demonstrator sites and evaluation work, decisions on further funding for the NDS will be taken. Whoever
is in government in 2014—it may be the Labour party, in our fifth term, I guess—will have to contend with a rapidly growing population of dementia patients. [Interruption.] Let the record show the murmur of assent across the Chamber at my mention of a fifth term. It is crucial that over the next five years, the development of clear and flexible care pathways for the treatment of dementia patients must be a priority for all those in local government, the NHS, the voluntary sector and the private sector who are involved in the care and support of individuals, carers and families affected by dementia.
The development of the understanding, treatment and perception of dementia that we all hope the NDS will achieve must start at the beginning with early diagnosis. I note that my hon. Friend referred to that early in his remarks. Unfortunately, as the Government’s quality outcomes framework has identified, dementia is being identified at a rate of only 40 per cent., which leaves the majority of people suffering from dementia at any one time going undiagnosed for an indefinite period. We are making progress, it is true, and I know that the Minister is concerned about the issue.
David Lepper: Does my hon. Friend share my concern that where diagnosis is being well done, increasingly, numbers of younger people—some in their late 30s or early 40s—are being diagnosed with dementia and that that is a patchy picture across the country, but one to which the Department of Health perhaps needs to pay attention?
David Taylor: My hon. Friend is of course right. The number of early-onset dementia patients is underestimated according to whoever one talks to. I think of a close family friend who seemed unusually forgetful in her late 30s and early 40s, who was eventually diagnosed with dementia and is in a pitiful condition as we stand here this morning. She is now in her 50s, but that is early onset, by any definition, and more needs to be done.
The National Audit Office estimates that only one third of people with dementia receive a formal diagnosis. That is yet one more illustration of the low level that we are starting from and, as such, evokes a “better late than never” response to the NDS, which cannot come soon enough for the patients, carers and families who have to contend with dementia on a daily basis.
Dementia patients face a distressing and disturbing lottery that is only partly geographically-based. The NDS, the carers strategy, the long-term care strategy and the end-of-life strategy will all help to address the paucity of qualified support and care for sufferers of what is now almost a ubiquitous disease. However, we need to increase the pace of reform before local services become overwhelmed by the number of people needing the specific form of care and treatment required by dementia sufferers. We need to go more than the extra mile. In a vivid comparison, the hon. Member for Castle Point (Bob Spink) suggested that the amount of money going into research was the equivalent of building one mile of motorway. On that basis, we need to go several miles along the motorway.
There are four things that I would say to the Minister. Four words characterise the concern of those in this place who interest themselves in dementia. The first, of
course, is resources—ring-fenced resources. The second is research. We must invest a great deal more in research. The third is training. I hope that the all-party group’s report—I look to the chairman to say when it might be published, but it cannot be long—will focus specifically on training. I hope that the Government will respond directly to its recommendations.
The fourth is inspection. On the birthday of the Care Quality Commission, we must ensure that there is an inspection regime not only for residential care, which of course is necessary, but for care in the domestic setting. Two thirds of people with dementia are being cared for, with personal support, in their homes or in other people’s homes, rather than in residential care. That is where we see a really substantial gap. If we or a family member, perhaps a parent, were unfortunate enough to become one of the almost 1 million people with dementia, what would we expect? What would we want? We have to do a great deal more for those in the home setting. That was clear from the evidence given to the all-party group about two weeks ago.
Bob Spink: The hon. Gentleman has reached a particularly moving part of his speech. Will he mention the great love and dedication of the vast majority of those working in care homes who care for those with dementia? Many of them are unsung heroes.
David Taylor: They certainly are.
My final comment is this: although I have been critical about the quality of care and training, it is not intentional or deliberate cruelty. It is often unintentional neglect by untrained staff that causes problems for the 750,000 of our fellow citizens who are affected.
10.12 am
Mrs. Jacqui Lait (Beckenham) (Con): I congratulate my hon. Friend the Member for Rugby and Kenilworth (Jeremy Wright) on his success in the ballot. He spoke of the broad sweep of the strategy, which is of concern to many. I also congratulate the hon. Member for North-West Leicestershire (David Taylor), who continued in that vein. However, I am about to break the trend, as my speech, which I hope will be brief, is very much rooted in the borough of Bromley, of which my constituency is part.
Bromley has the highest proportion of elderly people in any London borough. Although it is generally regarded as being a wealthy area, dealing with those who suffer with dementia represents a fairly big challenge—and, as many have said, this is an increasing number. We have an excellent voluntary sector: I am thinking of Mind, the Alzheimer’s Society and the many other charities, which do superbly well in providing wonderful care, and so far as is possible, so do our health and social services. I suspect that, in common with many other areas, we have an increasingly large cohort of GPs approaching retirement age, but what makes Bromley slightly different is that we still have far too large a proportion of single-handed GPs.
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