Speech: 29 November 2011, Andrew Lansley, Dementia Action Alliance


I’m delighted to be able to join you today.

In terms of the future of the health and care system, there are few more important issues than dementia.

In the context of major reform to both our health and care system, the priorities of the National Dementia Strategy are as relevant as ever, and we are committed to delivering them.

Earlier diagnosis so people can access the support they need more quickly and maintain their quality of life.

Improving the quality of care in hospitals and care homes – with a clear focus on outcomes.

Reducing the use of anti-psychotics.

And above and beyond that, much greater investment in research. More focus on personalisation and choice.

These are all areas that have been championed by the Dementia Action Alliance.

Since I became Secretary of State, I have been impressed, time and time again, by the commitment of charities, the royal colleges and many other professional organisations to work together to find answers to tough questions.

The Alliance embodies this spirit -it’s not only its passionate advocacy that I value, but its constructiveness and optimism.

Not just in its push to reduce the use of anti-psychotics, but also its drive to improve education and training of nurses, GPs and many more working in health and care. 

And the potential it sees in involving partners from outside the health and social care sector such as BT, who also want to play a part in improving the quality of life of people with dementia.

These kinds of partnership are vital because of the scale of the issue we are facing.

Dementia is the condition that’s most feared among the over 55s.

It’s also perhaps the one that’s least understood.

Its symptoms easily confused or written-off as an inevitable consequence of ageing – sometimes by people who have dementia, and sometimes, by the professionals.

We’re not unique in this respect – this is a global issue. There are 36 million people with dementia in the world today.

And 28 million of them don’t have a diagnosis. In this country, we do slightly better, but not much.

Over three quarters of a million people with dementia in this country. Six out of ten of them without a diagnosis.

450,000 people unlikely to get help until their condition leads to a crisis for them or their carer.

The tragedy is that they will never discover that a diagnosis doesn’t mean the beginning of the end.

Often, it’s a gateway to more effective support and treatment, that will help them stay independent for longer and plan for the future.

This is why we’ve now rolled out a national campaign on the signs and symptoms of dementia. And why improving diagnosis rates – particularly in areas that are low – is one of the priorities in this year’s operating framework published last week.

It’s why we’re investing in memory clinics and other forms of support that can help people in the early stages of dementia to cope.

It’s simply wrong to assume that because a condition has no cure, there’s no hope.

And no government should be immune to the struggle of people who have dementia to hold on to their sense of identity, their self worth, if their disease rapidly progresses.

But I won’t pretend there’s no financial incentive.

We know that good support at home for people with dementia can reduce the need for admission to a care home by a quarter.

Even in very complex cases, that require a highly skilled mental health team, good case management can reduce admissions to care homes and save money.

Carer support and counselling at diagnosis plays its roll too -  reducing care home placement by 28 per cent.

The National Audit Office estimated that the average general hospital could save £6 million a year if they improved treatment of older people on their wards with dementia.

The London School of Economics estimated that in relation to hip fracture alone, better management of patients who also have dementia could save between £64 and £102 million in England every year.

The case for both improving the quality of care, and developing new treatments is abundantly clear.

Investment in research is rising – up from £12.7 million in 2009-10 to £18.6 million in the last financial year

The National Institute for Health Research will provide an extra £18 million, over 5 years from April 2012, to set up new biomedical research units focused on world-class research.

The Medical Research Council will increase its funding on research on neurodegeneration from £34 million to £37.5 million per annum

There has been a good response to the themed call for research, which, with enough high quality bids, will also lead to more money for research.

And many charities and other professional organisations will work together to promote funding opportunities to the dementia research community.

The benefits of this investment won’t be immediate. But I am confident in the foundation we are building.

Last week, we celebrated the six-fold  improvement in cancer survival rates of the last 40 years.

My hope is that in ten or 20 years’ time, we’ll be able to point to a similarly significant breakthroughs in how we treat dementia.

There are steps we can and should be taking now, however.

Last year, we set a challenge to the health and care profession. We said that we wanted to reduce the use of anti-psychotics to treat dementia by two thirds by the end of this month.

I know I’m preaching to the converted today. Members of the Alliance have been the driving force behind this agenda.

But even so, I want to underline the seriousness of this problem.

1,800 lives lost every year because people with dementia are being wrongly prescribed anti-psychotic drugs, the majority of which are not even licensed for dementia.

Thousands of people with dementia each year being denied their dignity, their right to self expression because some parts of the health and care system treat symptoms of distress as challenging behaviour  that must be suppressed.

We won’t know if the target we’ve set has been met until well into next year. But early indications aren’t good.

And if we haven’t made significant progress, we will take tough action. 

There are some who argue that we’re asking too much: that in care homes and hospitals, there are few alternatives to anti-psychotics.

I disagree. The best care homes get it right. And they do this by taking the time to understand the behaviour of people with dementia and to listen to them – by understanding their personal history and their life story.

Like the care home resident who was becoming agitated because he missed his garden.

In response, the home relocated his garden shed to the care home’s garden so he could work in the garden with his own tools whenever he wanted.

Or the lady who used to work as an administrator in a prison during the war and would try to find and remove keys from all over the building because she remembered the need for security.

 Instead of prescribing anti-psychotics, the staff gave her a piece of wood with five locks on it and five keys that fitted on a key ring.

So every time she left her room, she’d turn the locks. And as a consequence, she stopped removing keys from the building.

Much of this is about the quality of the workforce in the care system. This is why one of the key themes of the engagement on the future social care is on how we support the workforce to deliver good quality care.

The CQC inspections have highlighted some shocking failures in care homes, hospitals.

I am determined that, just as we celebrate what’s good about the health and care system, we’re equally conscientious when it comes to shining a light on poor care.

But while we need to take a good hard look at the areas where things go wrong, we shouldn’t lose sight of is what makes care better – what good looks like.

There was one thing that was particularly striking in the reporting around the EHRC’s study of home care visits.

When Linda Stephens, spoke about the quality of care her mother received in an interview on the radio last week, she said that she was in no doubt that the care assistants who were doing their job well knew this – they understood what good care was.

But she could see that those who weren’t doing a good job would have no consciousness that what they were doing was wrong.

This doesn’t excuse poor care, and it certainly doesn’t excuse abusive or aggressive behaviour. But it tells us more about the problem – that there’s  tolerance – even an expectation – of dismissive or disrespectful behaviour which goes unchallenged by peers or managers.

Some of it is about the quality of leadership in different organisations – how leaders in the health and care system establish a culture that prioritises dignity and respect.

Nursing directors and medical directors in the hospitals will know when care on geriatric wards is not up to scratch. They have the power to do things that will help put it right. 

But in dementia, as well as leadership, it’s about education and training. The paucity of understanding about the symptoms of dementia and how it can be managed must be addressed.

That’s why we asked Skills for Care and Skills for Health to develop common core principles on supporting people with dementia, which set out the basic understanding of dementia that all health and social care workers need. 

And this year, we’re investing in eight education and training projects on dementia, covering areas such as life story work, reminiscence, and training and support for family carers 

It’s why Professor Alistair Burns, our national clinical lead on dementia will be surveying the content of curricula in those training to work in health and care to check that tomorrow’s doctors, nurses and care professionals have the right preparation to work with people with dementia. 

And as in both health and social care, we begin to develop more sophisticated ways of measuring the quality of the care people receive, it will become increasingly obvious which services are meeting that challenge well and which aren’t.

In the NHS operating framework, which we published last week, we’ve made it clear that, in relation to dementia, commissioners must ensure that all providers are compliant with the NICE quality standards.

And that there must be more effort to improve diagnosis rates and reduce prescribing of anti-psychotics.

From 2012/13, through the Commissioning for Quality and Innovation (CQUIN) framework, we’re introducing a new goal to improve the diagnosis of people with dementia in hospitals.

When over 75s are admitted to hospital, they can expect to have a dementia risk assessment. If they are diagnosed with dementia, they should be referred to local memory services that can give them support.

This will not only help us improve diagnosis rates, it will help raise awareness and improve treatment of people with dementia in hospitals.

In addition, with the NHS information centre, we’re developing clearer indicators to measure the quality of care for people with dementia and their carers.

We would very much welcome the Alliance’s input into this work. Where there’s poor care, we want to be able to identify it, and where there’s good care, we need to celebrate and reward it. 
Better quality of care in every setting. More opportunities for early intervention, more personalisation – that’s the challenge.

It goes hand in hand with putting people in control of their care.

As the Alzheimer’s Society has said in its statement on involving people with dementia in their care, it’s people with dementia who are the experts on what it’s like to live with their condition.

I know that as of yet, use of personal budgets for people with dementia has been comparatively low.

But when many people with dementia – particularly in the early stages – have a combination of health and care needs, and when their carers will often need quite specific support as well, I believe they could be truly transformative.

We’re currently evaluating a series of projects that use dementia advisers and peer support networks to support people with dementia and carers.

Because what people with dementia and carers tell us is that what they want is one point of contact who can help them develop the care package that will work for them.

The last thing they want is to be stuck navigating a complex system – the endless phone calls to their local GP surgery or to social services that never seem to amount to anything.

We still have a long way to go if we’re going to improve the quality of care for people with dementia. But I believe that, through the National Dementia Strategy, and the focus on outcomes, we’re building strong foundations.

With no sign that the number of people with dementia is going to decline, and there’s no miracle cure on the horizon, of course, there’s much more to do and we need to move faster.

Quite simply, the human and economic cost of not improving the quality of care of people with dementia is too big a price for society to pay.

That’s why I’m personally committed to the dementia strategy.

And I will do everything possible to make sure we improve the experience of people with dementia and their carers.

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