Speech: 1 November 2011, Paul Burstow, Dementia Congress

Paul Burstow speaks at Dementia Congress.

This was published under the 2010 to 2015 Conservative and Liberal Democrat coalition government

Paul Burstow

If you ask the over 55s what their biggest health fear is, it’s dementia.

More than cancer, more than heart disease, more than getting smashed up in car crash - they fear dementia.

Go back in history, and you’ll see that what motivates people to form communities, commonwealths and government is to protect each other - from outside threats, but also from the fear of them too

Because when people live in fear - whether of crime, neglect or a debilitating disease - there can be no security. No liberty.

Our job is to reduce people’s fear of dementia.

That’s what the Dementia Strategy is about.

That’s why, when I came into office, I didn’t just chuck it in the bin, as new governments sometimes are inclined to do.

The priorities it sets out are the right ones.

Early diagnosis - because we know that of the 750,000 people with dementia, 6 out of 10 go undiagnosed.

We recognise too well why this is - fear and stigma among people with symptoms.  Poor understanding among health professionals.

And we can also rehearse ad infinitum the benefits of early diagnosis.

That’s why in September, I allocated an additional £10 million for local authorities to spend on memory services.

Better treatment that leads to a better quality of life, that enables people to maintain their independence for longer and plan for the future with their families.

It’s how we avoid the very real and personal tragedies that we are all too familiar with - where with alarming rapidity, someone goes from living an independent and active life to institutionalisation. Where family members have to watch their loved one’s increasingly desperate struggle to hold on to their identity and sense of self worth.

That’s the human price we pay when we get it wrong.

But there’s an economic cost too.

The analysis of the National Audit Office’s 2007 report still applies. Too often, spending on people with dementia comes too late, and this leads to a much bigger bill for health and social care services.

We know that good support at home for people with dementia can decrease institutionalisation by nearly 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 answers are there, and hidden in plain daylight.

Improving hospital care

It’s the same with improving hospital care. Because we know - and have known for many years - that people with dementia in hospitals are admitted for longer, are more likely to die or to end up in a care home.

The CQC’s recent report provided a shocking reminder of how care of older people in our hospitals needs to dramatically improve.

One in five hospitals failing to fulfil their legal duties towards older people in their care.

If that’s not reason enough, what about the costs?

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.

And improving people’s experience in care homes. Let’s not pretend we don’t know what “good” looks like in care homes.

Where people with dementia live health and independent lives - not an isolated existence as passive recipients of care.

Where staff take the time to understand people’s history and treat their concerns as legitimate - where they don’t talk about challenging behaviours, but signs of distress.

Like the care home where staff noticed that two residents used to try to put their coats on and leave the building at the same time every afternoon.

After talking with the residents and their family, staff realised that they were remembering going to the bus stop to collect their children from school.

So rather than seeing it as challenging behaviour that needed to be medicated away, they put a bus stop and seat in the corridor.

At 3.30pm each day, the two ladies would put their coats on and go to the bus stop, talk to each other for half an hour and then return to their rooms.

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.

Simple interventions that depend on one simple thing - staff in care homes seeing people with dementia as individuals, with histories and experiences.

I know that yesterday, you had a lively debate about whether it was realistic to reduce the use of antipsychotic drugs to treat dementia.

Let me be absolutely clear.

These drugs kill people. They increase the risk of strokes and other life threatening conditions.

They are not licensed for treating dementia.  They can worsen the very signs and symptoms that are the trigger for the prescribing in the first place.

Every year 1,800 people die prematurely as a result of being prescribed these drugs.

Call it the chemical cosh, call it chemical restraint, call it what you will.  It is a prison sentence, locking a person in their own body.

Not enhancing their quality of life.  Shortening their life and robbing them of their dignity in the process.

I first raised my concern about the inappropriate and over use of antipsychotics in 1997.  I asked a Parliamentary question.

Even back then, the medicine authorities had warned of the side effects and risks of routine prescribing.

Those warnings went unheeded.

In 2001 I published the first of a series of reports called Keep Taking the Medicine that drew together the evidence.  That evidence was compelling even then.

Drugs being used for long periods on repeat prescription on a large scale.  A lack of routine medicine review.

Then finally the Department of Health commissioned Sube Bannerjee to conduct a review.  At long last.

That review concluded that antipsychotic drugs were being prescribed far to often as a first resort, that two thirds of prescribing was inappropriate, that they were shortening people’s lives.

That was in 2009.

For over a decade its felt as if I’ve been banging my head against a brick wall.  Now I find myself on the other side of the wall and I’m determined to hold the system to account.

In no other area of health and care would it be acceptable to put so many lives at risk for so little benefit.  To forcibly sedate to make people easier to manage.

It is a silent scandal that I won’t tolerate.

That is why last year I set our sights on achieving a two thirds reduction in prescribing by November this year.  It was a challenging target.

Over the past twelve months a lot has been done to raise awareness, to audit prescribing, to provide the tools to change practice.

At this point we don’t know for sure whether we’ve hit the target or not.  But early signs are that we are not moving anywhere near fast enough.

So I want to put it beyond doubt how seriously the Government takes this.

As the death toll has mounted, so too has the evidence.

So if we are a long way off hitting the target then I will take whatever steps are necessary to make sure far fewer anti-psychotics are prescribed in the first place.

And that when they are prescribed for people with dementia there’s a proper clinically justifiable reason and that the prescription is regularly reviewed.

I am by nature an optimist.

So I have great hopes that the Dementia Action Alliance call to action that I launched in June this year will achieve its ambition of completing 180,000 clinical reviews of people with dementia by March. Those reviews could be the turning point.

Quite literally, liberation day for tens of thousands of our fellow citizens.

And liberty is what this is ultimately all about.

Parliament has put in place deprivation of liberty safeguards in the Mental Capacity Act.  The Act’s purpose is simple.  To protect the best interests of the individual, their dignity, their distinctiveness.

Antipsychotic drugs prescribed against the evidence, without clear clinical justification amount to a deprivation of liberty.

No one should be surprised.  That after a decade of raising the alarm about this issue I would not hesitate to act.

And let’s be clear what liberty means here.

It means turning a light back on. It means someone getting their loved one back.

Only yesterday, I heard the story of a man with dementia who was a resident in a home in Medway. He’d been prescribed anti-psychotics for many years. Following a review by a pharmacist working at Medway primary care trust, he was taken off them.

A couple of weeks later, the care home phoned the pharmacist to tell her that, that morning, the gentleman had looked at himself in the mirror and announced that he was looking scruffy and needed a shave. It was the first time he’d shaved himself for several years.

So that’s what we need to focus on in present. But what about finding the cures and treatments of the future?

You’ll be only too aware of the historic lack of investment in research into dementia.

It’s another issue I feel, until recently, has been neglected - one I worked with the Alzheimer’s Research Trust in 2010 to make the case, and which I made sure featured in the last Liberal Democrat manifesto last year.

The Ministerial Advisory Group on Dementia Research that I chair recently published a route map setting out how we will raise the profile of dementia research and increase spending.

Investment is already 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 lead to more money for dementia 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’m more confident now than I was when I took up this post, that in a decade, we will begin to see the same kind of breakthroughs in dementia treatment and prevention that we’ve seen in other research areas like cancer.
Dementia poses big challenges to our health and care system.

It demands reform.

We know that the costs of dementia are huge - the Alzheimer’s Research Trust puts the figure at £23 billion per year.

More than cancer and heart disease combined.

But when talk turns to reform it tends to concentrate on health reform.

Social care reform matters just as much.

We need law reform, we need funding reform too.

But the case for funding reform will fail to reach first base if don’t wake people up to social care’s nasty little secret: it isn’t free, and never has been.

Today families face potentially catastrophic costs.

Despite this bitter truth.  Most people think that social care is free just like the NHS.

So I need your help.

If funding reform is to make progress it must be measured against reality not fantasy.

When the Dilnot Commission reported in July you could have been forgiven for thinking that Andrew was proposing introducing charges for care for the first time, not that his plans were going to cut the cost of care for most families and offer peace of mind to all.

Together we must shake people out of this cozy dream and awaken them to the reality of our unfair system.

The engagement on social care that I launched in September will inform the White Paper that we will publish in April next year.

Alongside it, we will also publish a progress report on that will set out our response to Andrew Dilnott’s recommendations on funding.

Make no mistake - the two are clearly linked.

The things we know lead to better quality care in almost every case also lead to less costly care.

Intervention and prevention with early diagnosis.

The work on personalisation, led by Jeremy Hughes of the Alzheimer’s Society.

A better quality experience in hospitals and care homes.

Greater integration - not only of health and social care, but across all public services.

More diverse and responsive services - using the incredible resources and expertise that the voluntary sector has to offer.

Things we know not only lead to better care, but also less costly care.

Justification again that NHS and social care reform cannot be put off because we’re living in times of austerity - it is because we’re living in times of austerity that we need to reform.

That’s the challenge in front of us. And none of us underestimate its size.

But in the partners I see around me today - in the organisations that make up the Alliance - I count myself very lucky.

Rather than ending with a rousing chorus on how we need to do better, and move faster (though undoubtedly, these things are true), I want to end with a word of thanks.

During my eighteen months as care minister, I have been impressed, time and time again, by the work of charities, the royal colleges and many other professional organisations to support people with dementia and their families.

It’s not only their passionate advocacy that I value.

It’s the ability of these organisations to work together, and develop better services.

You see it in the work of the Alzheimer’s society, who have championed the cause of people with dementia and their families for many years, and have been the driving force behind the Dementia Action Alliance.

You see it in the commitment of our royal colleges - in the Royal College of Nursing’s focus on improving how people with dementia are treated in acute care settings, to name but one example.

And in the dedication of many charities - in Dementia UK’s championship of better support for carers and training for health and social care staff. Or the British Geriatrics Society’s work to improve diagnosis and treatment of people with dementia.

As I’ve said, by nature, I’m optimist. And what underlines my optimism is the commitment of the many organisations here today to do better for people with dementia and their carers.

When I think of Churchill’s oft quoted maxim that a pessimist sees difficulty in every opportunity and an optimist sees opportunity in every difficulty, I know which camp these organisations belong in.

And that’s what gives me the confidence that we can, and will, deliver on early diagnosis, improve the quality of hospital and home care, end the scandal of inappropriate prescribing, and place this country in the forefront of the global research effort to tackle dementia.

Our goal.

Quite simply to banish the fear of dementia.

Thank you.

Published 2 November 2011