Alzheimer's Disease and Dementia

Part of the debate – in the House of Lords at 7:37 pm on 10th March 2004.

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Photo of Lord Warner Lord Warner Parliamentary Under-Secretary, Department of Health, Parliamentary Under-Secretary (Department of Health) 7:37 pm, 10th March 2004

My Lords, along with other noble Lords I am grateful to the noble Lord, Lord Sutherland, for giving us an opportunity to discuss this important topic. I am grateful too for his recognition of the increased investment into care of the elderly that the Government have made. I join him and others in paying tribute to the work of the Alzheimer's Society. In fact, its new chief executive used to work for me, which may totally destroy his public reputation, of course.

I also pay tribute to the moving and thoughtful maiden speech of the right reverend Prelate the Bishop of Coventry. We look forward to his further contributions in this House. I agree with the noble Earl, Lord Howe, that the debate has been informative and a force for good.

As noble Lords have said, there are probably around 700,000 people in the United Kingdom with dementia requiring care and support. By 2050, that number will have grown to around 1.2 million. The noble Baroness, Lady Greengross, illustrated the incentive this provides all of us to try to reduce the growth in that rate and its impact on services. Although in many instances support comes from family and friends—I shall return to that later—a great deal is provided by the statutory and voluntary sectors.

The first point I should like to address is one that was raised by a number of noble Lords concerning the capacity of the care home sector. The Laing & Buisson Care of Elderly People market survey, published in July 2003, put the national bed capacity in care homes from all sectors at 470,000, with demand estimated to be around 460,000. The survey also indicated that homes are closing at a slower rate than in either of the previous two years. We accept, as a number of noble Lords pointed out, that there are parts of the country where homes have closed in such numbers that a person's choice of care home is severely limited, and that there are local shortages and problems to be addressed. But I do not believe that this is a national crisis.

Estimates of the number of people with dementia in care homes are, we acknowledge, as high as two-thirds. That is why many councils have increased, or are looking to increase, their commissioning of specialist provision for people with dementia.

A number of noble Lords have raised issues in regard to medication. Although the care of older people relies on a complex arrangement of services across a range of settings, of particular importance to the treatment of those with dementia is the use of medication. The treatment of those with behavioural problems requires very careful consideration and planning. As the noble Lord, Lord Walton, and the noble Baroness, Lady Finlay, have reminded us, the disease classifications in this area can be extremely difficult.

Concern has been expressed in the past about inappropriate and over-prescribing of new atypical antipsychotic drugs for people with dementia, especially those older people in care homes. These new drugs can be an effective way of managing a range of conditions. However, it is important that they are used appropriately and as part of a wider package of care that, where possible, includes non-pharmacological interventions.

Yesterday, the Committee on the Safety of Medicines recommended that the use of two atypical antipsychotic drugs—Risperidone and Olanzapine—be avoided in the treatment of patients with dementia because of an increased risk of strokes. These drugs are not licensed for the treatment of patients with dementia. I hope this will be seen as an opportunity for local clinicians and care managers to look again at the range of treatments available for treating those with dementia, with a view to ensuring that the most appropriate and beneficial services are delivered.

The pharmacological treatment of dementia has been the subject of work conducted by the National Institute for Clinical Excellence, as the noble Baroness, Lady Finlay, and other noble Lords have said. NICE has already produced guidelines on the use of anti-dementia drugs and is currently in the process of producing further guidance on all aspects of treating patients with dementia.

I acknowledge to the noble Earl, Lord Howe, that there have been variations in implementing NICE guidance but, as I have said in public before, we are on the case in this area; improvements are being made; and all SHAs are trying to monitor the progress made by PCTs in the application of NICE guidance.

Turning to the planning and performance management of the system, the development of the right services, in the right place and at the right time, is important if those with dementia are to get the care they need. Central to service improvement is the National Service Framework for Older People, launched three years ago. It is important to emphasise that this framework is a 10-year plan—it is not a two-year or three-year plan but a 10-year plan—and it contains a standard dedicated to the improvement of mental health services for older people.

The Priorities and Planning Framework for 2003–06 requires protocols to be in place across all health and social care systems by April 2004 to develop and provide integrated services for the care and management of older people with mental health problems. New performance indicators are being established to measure progress and the Commission for Health Audit and Inspection will this year complete an inspection of these services as part of the wider National Service Framework for Older People inspection.

I turn to the issue of research, to which a number of noble Lords, including the noble Lord, Lord Walton, and the noble Baronesses, Lady Finlay and Lady Greengross, referred. I agree that we have to do all we can to support research in this area. During the past few years, the Government have organised nearly £40 million of research on dementia via the Medical Research Council and the NHS Policy Research Programme. We need to be optimistic about this research investment, as the noble Lord, Lord Sutherland, and others have indicated.

I am grateful to the noble Baroness, Lady Greengross, for her information about the cognitive vitality of the benefits of bingo. I shall certainly pass on this information to my 87 year-old mother, who is an avid fan.

I turn now to the workforce issues, which have been raised by a number of noble Lords. Having the best services in place for people with dementia relies on an appropriate workforce. I recognise that there is a journey to travel in this area, as a number of noble Lords have mentioned. The department has convened an Older People Care Group workforce team to consider anew the workforce and training needs of those working with older people. This approach brings together a wide range of people. The workforce team has also established a subgroup to look particularly at dementia services.

We need more flexibility and there is much to be done, as a number of noble Lords have suggested, but there are some gleams of light such as the Croydon memory service, which is a one-stop shop for people of different ages with memory problems. Assessments can be done either by health or social workers and there is good access for people from ethnic minority backgrounds.

A number of noble Lords touched on the issue of carers. But professional care and support in this country is only one side of the coin. The majority of people with dementia are cared for at home, which can be a very demanding and exhausting task for their carers. I share the concern of all noble Lords that we recognise the contribution and altruism of carers and what they do in very difficult circumstances.

As the noble Baroness, Lady Pitkeathley, mentioned, the Government have done more to recognise the contribution and concerns of carers. We developed the national carers strategy in 1999 with carers and the organisations which represent them. I should like to pay tribute to the work that my noble friend Lady Pitkeathley has contributed to the area of carers over a long period of time.

A carers grant was introduced in 1999 to support councils in providing breaks and services for carers in England. The grant has been increased annually and has provided an extra £225 million over the past four years. It is worth £100 million this year and by 2005–06 it will be £185 million, helping an additional 130,000 carers. Councils will be able to use the money to give carers help with taking a break from caring and also to give them ongoing support with caring.

A number of noble Lords raised the issue of personal care. All the initiatives we are taking to improve services for those with dementia and their carers are based on making services more person centred, and we believe that better choice and better services are beginning to be provided. It is worth quoting here from the National Service Framework for Older People in Standard Two:

"Older people and their carers should receive person-centred care and services which respect them as individuals and which are arranged around their needs".

It should,

"recognise individual differences and specific needs . . . including cultural and religious differences".

I hope that this reassures the noble Lord, Lord Chan, and the right reverend Prelate to some extent, but I recognise that we need to do more to make services accessible to ethnic minority older people.

As to the issue of race equality schemes, which was raised by the noble Lord, Lord Chan, we have launched a 10-point plan to ensure that black and ethnic minority groups are equally represented at all levels of the NHS. Trevor Phillips, chairman of the Commission for Racial Equality, is chairing the group that will be working on this issue.

Many, including the noble Lord, Lord Sutherland, feel that to offer truly person-centred services we must make all personal care free. We respect those views, but the Government have taken a different view and do not accept that this is a flaw at the heart of their policy. In their response to the Royal Commission on Long Term Care, which was chaired in such a distinguished manner by the noble Lord, Lord Sutherland, and which formed part of the NHS Plan, the Government stressed that free personal care for everyone would be costly, would not be guaranteed to lead to service improvements and would not help the poorest members of society.

Making personal care free for everyone carries a substantial cost, both now and in the future. It would consume most of the additional resources being made available for older people. We believe that the funding available should be used to help promote the independence of all older people. Free personal care for all would not achieve this. It would be difficult to distinguish between elderly people with different conditions.

At the moment, seven out of 10 older care home residents already have some or all of their personal care costs paid by their local council. If all additional money for older people were to be used to provide personal care to the rest of the older population, the frailer and poorer members of society—those in most need—would not benefit.

In July 2002, the then Secretary of State for Health, Alan Milburn, announced a wide-ranging package of measures radically to reform services for older people. By 2006, compared with the resources available today, another £1 billion a year will be spent on social services for older people. The package focuses on six main themes: faster assessment; stabilising the care home sector, which I have talked about; expanding the range of services; easier access to free community equipment; increased choices for older people; and more support for carers. All these services are of great relevance to older people with dementia.

With regard to intermediate care, this will build on the development of intermediate care services, heralded in the NHS Plan and funded to the tune of £900 million. Intermediate care is crucial to the care of all older people as it promotes care close to one's home—in one's home, wherever possible. Hospitalisation for older people can lead to institutionalisation, and loss of independence and dignity. Older people prefer to be cared for at home. We aim to ensure through the initiatives outlined that they are able to exercise this choice.

A number of noble Lords, particularly the noble Baroness, Lady Barker, raised issues relating to ombudsman cases. The noble Baroness asked about progress on continuing care, and the pros and cons of guidance following the Health Service Ombudsman's judgment in the Coughlan case. Since publication of the report in February 2003, good progress has been made in investigating cases in which people may have been wrongly denied continuing care in the past.

I reiterate that the care people with Alzheimer's or any other condition receive from social services or the NHS should be determined by the assessed needs of each individual. That has consistently been the Government's policy. It is not, therefore, possible to say that in all cases, in any particular setting, all care will be provided either by the NHS or social services. However, the existing guidance, issued in the summer of 2001 in response to the Coughlan judgment, made it clear that,

"the setting of care should not be the sole or main determinant of eligibility. Continuing NHS health care does not have to be provided in an NHS hospital and could be provided in a nursing home, hospice, or the individual's own home".

It seems clear that continuing care may be provided in the home.

The same guidance also discusses the various aspects of eligibility criteria, including that,

"the individual has a rapidly deteriorating or unstable medical, physical or mental health condition" and may require support from the NHS. Again, the guidance seems to cover the issue the noble Baroness raised.

On current activity in response to that ombudsman's report, all SHAs—strategic health authorities—are fully engaged in investigating cases of possible recompense brought to their attention. Strategic health authorities are expecting to complete the majority of cases and the changes needed by the end of the March 2004 deadline. All 28 strategic health authorities agreed new criteria for continuing care last autumn.

There is also a current review of continuing care in progress across nine strategic health authorities. We will consider new guidance in the light of that review.

The noble Baroness, Lady Barker, and the noble Earl, Lord Howe, alluded to the recent ombudsman case involving Mr Pointon. I do not want to comment in detail on this particular case in Cambridgeshire, but it has been referred to as a test case. However, it is a decision of the ombudsman in relation to the care of one individual. The ombudsman has said, very helpfully, and has been at pains to make it clear, that it is an individual case. In these cases, each individual should receive care following appropriate assessment, with services shaped around the needs of the individual, as the recent White Paper on choice and responsiveness in the NHS emphasised. That was the finding of the ombudsman, and that is what we are trying to ensure applies in these sorts of cases.

We have also required all strategic health authorities to agree new eligibility criteria for continuing care which, as I have said, they have done.

The noble Earl also mentioned the mental incapacity Bill. The Department for Constitutional Affairs has the lead on this; the draft Bill was published in the summer of 2003, and a report of the Joint Scrutiny Committee has, I believe, just been published.

In conclusion, let me say that older people with dementia need and deserve better services. The Government have set in place a number of initiatives to try to ensure that that happens. More money than ever before is being invested in older people's services. As well as the additional funding for intermediate care services and the extra £1 billion a year for social services by 2006 already mentioned, older people will benefit from the record allocations to primary care trusts announced in December 2002: £148.3 billion for 2003–04 to 2005–06—a cash increase of more than 30 per cent in the total allocation. A very considerable proportion of that will go to services for older people.

Many good local services are now developing, but we are not complacent. We must ensure that the personal needs and choices of older people and their carers are central to the services they receive, that they are able to play as full a part as possible in society and that they have their dignity and cultural differences respected and their independence protected as much as possible.