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Speech by Paul Burstow MP, Minister of State for Care Services, 26 October 2010: Improving Dementia Care Conference

  • Last modified date:
    20 December 2010

It’s just over a century ago that Alois Alzheimer first described the distinctive plaques and tangles of the disease that bears his name.

A hundred years on, there is no cure, but there is hope.

As this year’s awareness campaign made clear, we can now do a lot to help people live well with dementia at all stages of the disease.

I want to talk today about how we achieve faster progress – from point of diagnosis right through to the care people receive at the very of their lives.

The Coalition Approch

We are, at heart, a reforming Government.

We believe in shifting power out of Whitehall – to the townhall, the professional, above all to Citizens.

We believe in giving health and social care professionals more discretion, more autonomy, and more responsibility to achieve the best for the families they serve.

And we believe, finally, in giving people more power and influence to control and shape their own future – particularly through user-led organisations, which can help us to design and deliver services that people really want.

Transparency and Accountability

The dementia implementation plan, which some of you helped us to shape, encapsulates these principles.

No more targets.

No more micro-management from Whitehall.

A new focus on outcomes, not processes or inputs.

More choice for the individual.

And more control passing from the centre to the grassroots – and, with it, responsibility and accountability.

We’ve said that every Primary Care Trust will now have to account for their progress on improving dementia care. Not to me. Not to policy teams in Whitehall. But to the local people they serve.
And we will insist on full disclosure. PCTs will be expected to publish details of how they’re spending the money for dementia.

By doing so, they’re opening the door to local challenge, giving people a voice if they feel they’re being short-changed.

But people must be ready to use that voice.

Charities, pressure groups and individuals themselves have to be ready and willing to interrogate local plans and insist on the high standards of care.

And we all have to learn to judge success, not by inputs and processes, but by outcomes.

It can no longer be good enough for the NHS to do great things for a person in hospital, and then let them down by not continuing that support in the community.

The new Outcomes Framework will give commissioners a clear, unambiguous picture of what they need to achieve for people with dementia and their carers.

And through joint strategic needs assessments, councils will take a lead role in making sure the right connections are made across health and social care to achieve these results.

Hospital care

So what are our priorities for dementia care? There are plenty of them set out in the Dementia Strategy.


But for the me, the priority can be summed up in a single word: dignity.

Preserving a person’s dignity has to be the first and last principle of dementia care, whether it’s in hospital, in a care home, or in a person’s own home.

It’s so often the simple things that can be overlooked. How a person is dressed in the morning. The care and attention paid to their personal appearance. Choice over when they take their meals. Control over how they spend their time.

Dignity and compassion have to be maintained throughout the person’s dementia journey.

And particularly at the very end of that journey – which is why I welcome the new resources published today by the National End of Life Programme.

Training and awareness is key to this.

And I’m afraid we have to acknowledge there is a training deficit in the NHS as far as dementia awareness is concerned.

Like all deficits, it needs to be tackled head on, and we’ve reflected this in the position dementia has been given in the new Operating Framework.

Care Homes

Of course, the same applies in care homes. I’m sure many of you were glued, as I was, to the Gerry Robinson documentaries last year.

These films revealed how well-run care homes became more popular and more profitable, as well as better places to live.

They showed how imaginative leadership to inspire staff and involve residents in the running of care homes transformed their self-esteem and improved the quality of their lives.

But the images that really stuck in my mind were the stark differences between the care homes.

In a successful care home, there was a flurry of activity and chatter – energetic staff, happy residents.

In a struggling care home the mood was almost palpably bleak. Carers demoralised, residents slumped lifeless in their chairs, drugged up on medication.

Reducing Anti-Psychotics

Again, it shows that we must insist on a much stouter defence of people’s essential dignity and human rights.

Nowhere is this more important than in reducing use of anti-psychotic medication.

Sube Banerjee’s report laid bare the human cost of inappropriate use of these drugs.

The headline figure is 1,800 deaths a year – but the cost to people’s quality of life far exceeds this.

We need a wholesale change.

The evidence is clear.  These drugs cut lives short. 

They should not be routinely prescribed to people with dementia.

They should only ever be used as a last resort and then only for a short period.

So this is one area where I will be leading.

A national audit is underway and we will expect PCTs to publish their progress towards reducing usage.

Our aim: an overall reduction of two-thirds by November of next year.

But achieving these reductions isn’t achieved by a speech in a conference hall like this.

It’s achieved through action - through better practice in care homes and hospitals.

That is why Alistair is meeting with medical directors and the Royal College of GPs to look at how they can improve their record on anti-psychotic drugs.

The Public Finances

Now it would be wrong of me not to mention the financial context, something I know will be causing many of you here anxiety and concern.

So what does this mean for dementia care?

Well, even with the protection the Government has given to health and social care budgets, we still need to find significant savings to reinvest in improving care for the future.

More than £8 billion a year goes into dementia care, and the National Audit Office has suggested nearly £300 million a year could be saved.

So we need real imagination, boldness and creativity to find new ways of delivering care.

We need more examples like the GP-led memory service in Staffordshire – saving money precisely because it’s focusing on outcomes.

The team there has dramatically reduced hospital costs by bringing down the diagnosis time for dementia from three years to four weeks.

Let me repeat that. 

Diagnosis down from three years to four weeks!

Not because of any national target. Not because of pressure from Whitehall.

But because they saw the benefits for patients.

In dementia, as with other fields of health, quality pays.

Just as efficiency without quality is unthinkable, so quality without efficiency is unsustainable. We have to achieve both.

GP Awareness and Referrals

So yes, we need more investment in memory services in our communities.

But we also need a shift in professional awareness and attitudes.

Older people with memory problems should never have their symptoms dismissed as just ‘part and parcel of getting old.’

We need a ‘safety-first’ approach in primary care. As with cancer, the professional response should be “if in doubt, let’s check it out”.

We’ll be working with GPs and other primary care teams to look at how we can achieve earlier diagnosis so we can do more to postpone dependency and reduce costs.

Research

And we make these savings for a purpose. So we can invest in the treatments and care models of the future.

Earlier this year I had the pleasure of chairing a lecture by Professor Chris Dobson at St Johns, Oxford.

He spoke of the extraordinary work done by his team on the disease mechanism behind dementia and the role of proteins in the body.

We need outstanding programmes like this to continue.

As the Chancellor confirmed last week, dementia research will be prioritised within the health research and development budget.

And I’m chairing a Ministerial Advisory Group to make sure dementia researchers get a fair share of the £1.7 billion research fund.

One of the many issues we’re looking at is how we can encourage more people to take part in medical trials.

The Dementia Declaration

And that leads me onto my final point.

Because dementia, as it tightens its grip on our communities, will be something that, touches all of us in our everyday life.

So we all need to wake up to what this will mean.

Not just in Government, not just in the NHS, not just across social services.

Every single one of us has to be ready for a future where more people have dementia, and more will be caring for them in our communities.

That means boosting understanding, awareness and engagement across our communities as a whole.

We need examples like the WRVS, which is helping its 50,000 volunteers to become more dementia-aware.

I know Lynne Berry will be speaking to you about this later.

And where organisations like WRVS lead, other will follow.

I’m particularly encouraged by the Dementia Declaration, which I’ll be formally launching in a moment, because it demonstrates the culture change we need.

Removing the reticence to help older people.

Banishing the ignorance and stigma surrounding the disease.

Encouraging more organisations to come forward and make a contribution.

I pay tribute to the 45 organisations who have signed up, and I hope many more will follow in their wake.

Conclusion

To sum up then, my message is simple.

It’s a message of hope.

Yes, the road will be tough, and the financial context will make things difficult.

But I think we can rise to the challenge and make this a breakthrough period for dementia care.

And let me leave you with a story that sums up why it’s so important we do so.

It’s about an older couple coming to terms with late stages of the wife’s dementia.

She had sadly deteriorated to the point where she no longer had any recognition of who her husband was.

She was often extremely agitated and frightened in his presence, which as you can imagine was a terrible situation for everyone concerned.

But amidst all of this, her carers found some refuge, some consolation and some hope.

The wife, they discovered, was once a very talented musician – that was how she’d originally met her husband.

And so they hired a portable piano that she and her husband could play on in the care home where she lived.

It was an experiment – just a hunch really – but the impact was immediate.

Playing a duet on the piano once a week, not only calmed her, it restored her connection with her husband.

For the time they were together at the piano, the smiles, the familiarity, the gestures of intimacy that defined their relationship returned.

It gave the family the best possible outcome under the circumstances – a few precious moments of lucidity amidst the confusion and fear.

A powerful story. A hopeful story.

A story that shows all the hallmarks of excellence in dementia care.

This is the excellence we must insist on in every part of country.

And it’s the excellence, with your support and hard work, we can achieve in the years ahead.

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