I do not have any ideological objection to ‘dementia friendly communities’. It is hard to object being friendly however it is defined, so long as it does not foster a sense of belittling or victimhood for me.
However, it does concern me how superficial this construct is, potentially.
If you wish to extend the notion to providing reasonable adjustments, or ‘cognitive ramps’ as Al Power refers to them, it makes sense to me to know exactly what sort of residual cognitive abilities exist in the diversity of people living with dementia. That way you can seek to change the environment to make life easier (e.g. appropriate signage around buildings).
That is more meaningful than being ‘friendly’.
Kate Swaffer is the person who has coined the term ‘living beyond a diagnosis of dementia‘. I think her phrasing of it is very powerful one. It for me conveys the added dimension of life after the diagnosis has been made. It also begs the question of how a person makes a connection between his or her future, with his or her own past.
This is a different approach to the idea of an abrupt change of a ‘person with dementia’ compared to a ‘person without dementia’. The phrase combats directly the loss of continuity.
It’s reassuringly said, quite often, “But you’re the same person as you were before you officially had the diagnosis”. And this is of course true.
But the moment this diagnosis is disclosed means that changes occur; for example, in his or her ‘connectedness’ with the rest of the world, including perhaps employers, friends and family. And clinicians can treat you very differently.
A major aim of policy should be trying to combat the loneliness and isolation which can accompany the disclosure of a diagnosis of dementia. But it is hard to deny that this is fundamentally how a person’s social network changes after a diagnosis.
Tom Kitwood was way ahead of his time to think about this connectedness. Whenever mental stress is imposed on somebody, physical health is affected. Any abrupt change of environment or friends can be hugely unsettling. Of course, this is precisely what happens if a person with dementia enters a residential setting.
The dynamic changes in social network for a person beyond a diagnosis of dementia can be extensive, and yet we talk about dementia friendly communities as if they are always static phenomena. In other words, once they are built in a certain cost-neutral way they will remain so forever. They will remain just as they have been, prior to anyone person receiving a diagnosis of dementia, and for evermore.
I have often asked people with dementia how they feel about many close friends leaving them at the time of their diagnosis. Some of them have remarked that of those old previous friends who have remained as friends the friendship has become much less superficial.
Of course people have different experiences.
Maybe then the social network of a person living with dementia can be just as cohesive, even if consisting of different people. Therefore, the only continuity will be in society’s attitudes at large towards people with dementia.
And of course the person without dementia can become the person with dementia at any time. In an ideal world, the community should be worth living in whether you have dementia or not. What was wrong with the old approach of wanting to be as inclusive to everyone as much as possible?
I think overall the biggest failing of the ‘dementia friendly communities’ is that implies we all are in rigid groups of with dementia or without dementia, and we are defined by our label. This does not take any account of the changing relationships between us all at any given time.
There are many burning issues in English dementia policy. One is mitigating against a high number of low quality and unreliable diagnoses of dementia due to poorly trained staff and inadequate resources in the system overall. Another is the poor coordination of care following diagnosis, due to the haphazard partial and inadequate roll out of anything appearing like integrated or whole person care.
The implementation of dementia friendly checkouts is yet another example of English policy having taken route which appears to have as its objective enhancing the brand profile of contributors from the voluntary sector, rather than genuinely enhancing the quality of life of people with dementia or carers. These are checkouts with huge banners with the word ‘dementia’, and literature from a particular source explaining about dementia.
How this situation has arisen is easy to explain relatively, however. In the name of ‘dementia awareness’, people have clearly abused the well meaning intention of ‘Dementia Friends’. Public education of dementia was desperately needed in the UK, is a global aspiration, and was indeed signposted in the 2009 English dementia policy document.
The 2009 English dementia policy document, the only five year strategy to date from the Department of Health, was published by the Department of Health. It was called ‘Living well with dementia’. There have been piecemeal policy documents annually, but it is recognised that the follow up to this five year strategy has not been published yet.
Unlike in cancer, there is no worked up care pathway. Cancer Research UK has made great strides in producing such a document for cancer. Cancer, like dementia, is an important long term condition where timely diagnosis, and encouraging people live to better is a priority. Cancer benefits from some effective medical and surgical treatments which not only have an effect on symptoms but on disease progression.
Justice delayed is justice denied. In cancer, it is well known that the provision of clinical specialist nurses have vastly improved the wellbeing of patients particularly in end of life care, such as from Marie Cure or Macmillan. There is no such provision of such nurses in dementia. Currently Admiral nurses, provided by Dementia UK, are finding it tough to get commissioned despite widespread demand. The lack of promotion of them in recent policy documents is not justified given the huge literature for them proving beneficial outcomes. They should be in the second English dementia strategy which has been delayed without any explanation. Justice delayed is justice denied.
The UK instead is focusing on ‘dementia friends’. How the number of Dementia Friends suddenly shot up from 700,000 to 1 million is a bit of a mystery, save for the fact that this increase in numbers happened to coincide with an online registration exercise. The danger of course was that people were using ‘Dementia Friends’ as a tickbox exercise merely.
Another indication that a tickbox mentality was being applied to ‘Dementia Friends’ was the large numbers of people, including commissioners notably, who kept on referring to the provision of information sessions as ‘training’. It is categorically stated in all official communications from the Alzheimer’s Society that it is not training. The policy reason for this is that nobody responsible wants to promote inadequate training for dementia care settings, where great strides have instead been made for example in the development of the ‘care certificate’.
The ‘Dementia Friendly’ checkout is striking in the context of the worldwide aims of dementia friendly communities. Supportive communities, howeverso defined, are meant to be inclusive and accessible to all. They are meant to be non stigmatising.
One of the aims of ‘Dementia Friends’ is indeed to see beyond the diagnosis. People are therefore not labelled by their diagnosis. It would be hard to conceive of a supermarket queue for ‘Learning difficulties’, ‘Depression’ or ‘First episode psychosis’.
When Mick Carmody or Kate Swaffer, both leading members of Dementia Alliance International (the only peer group of people living with dementia internationally and peak body), get told, “But you don’t look as if you’re living with dementia”, they have been known to respond, “That’s very interesting – but do tell me, what does a person living with dementia look like?”
It is actually very rare for someone with dementia to be living only with dementia. Co-morbidity is common. If you had dementia and depression, which queue would you join? The dementia friendly queue or the depression friendly queue?
When I was at the Alzheimer’s Disease International conference in Australia earlier this year, one of the speakers asked all people with dementia to stand up. Citizenship for people with human rights is a major drive for policy worldwide, and a principle aim of advocacy based on human rights is to protect people with dementia and carers against degrading treatment. This has been enshrined legally in some form or other since Roman times.
Asking people with dementia to stand up in a theatre is making a spectacle of people’s living in an undignified manner. Kate Swaffer, Co-Chair of Dementia Alliance International, even mentioned in her plenary speech how offensive it was.
It is highly unlikely that people living with dementia want to ‘out’ their diagnosis in a shopping queue, when many will be wanting to go about the life as normally as possible. Could you imagine the tannoy announcement, “Will all people with Alzheimer’s disease go to checkout number 9 please?”
As it happens, the vast majority of people living with dementia do not want to join that queue and hate the idea.
Dementia represents about 128 different conditions, depending on how you count them, ranging from Alzheimer’s disease at one end (very common) to anti-potassium antibodies paraneoplastic dementia (relatively rare). As dementia, a progressive condition affecting the brain, can in theory affect any of the thinking functions of the brain, in theory it is possible that any of the cognitive functions ranging from attention to higher order visual processing can be affected. So that is what could be in theory expected in a ‘dementia friendly checkout’.
It is hard to say why dementia friendly checkouts have been greeted with such enthusiasm. Certainly any reasonable leaders in the NHS should not associate themselves with such an unintelligent offensive policy. English dementia policy and their leaders should not be for the promotion of themselves at the expense of the wellbeing of people living with dementia or carers.
For some time, Kate Swaffer had been suggesting to me that I should watch one of her favourite films ‘Babette’s Feast’.
In case you were unaware, one of Kate’s remarkable talents is high-end cuisine. Kate even ran a restaurant. I went past it in a mini van while I visited Adelaide suburbs earlier this year.
In case you haven’t yet seen this extraordinary, remarkable film, I do not wish to do any spoilers. I do need to tell you some basic details though – it involves Babette producing a meal for twelve people, consisting of top quality courses. She barely has any help, but does it all to budget. There is no money left at the end of the evening.
If you are desperate to know the plot of the film, please refer to the synopsis here.
Health and social care often look to other sectors to look for best practice. For example, only this afternoon, Jeremy Hunt made reference to two hundred ‘avoidable deaths’ in the NHS every week; ‘the equivalent of an aeroplane’. Travelling by air, for example the use of checklists, has become a paradigm for patient safety.
I started watching ‘Babette’s Feast’ just after midnight this morning. It finished before 2 am. It is an amazing film. You’ll see why when you watch it.
But in passing I could not of course help but think about the parallels between preparing a complicated meal for guests with ‘dementia care’. I’ve always had problems with the term ‘dementia care’ as it can sound very robotic. I think it is a rather unemotional term for something at the heart of humanity – that is looking after someone.
Is it that ‘dementia care’ sounds transactional? I think this issue of carer versus care recipient is problematic if there is a problematic power imbalance.
Back to the dinner party.
It is no small achievement for Babette to provide a meal with a number of courses, such that all the dishes arrive on time. This is a big operational ask.
But it is highly significant that the dishes had personal resonance for the guests – often invoking memories. Such evocation of memories, further, could lead to a massive outpour of wellbeing.
The meals together can cause the guests to feel much more content, such that they enjoy each other’s companies – overall the group’s wellbeing is much enhanced.
Therefore, Babette’s feast is more than a set of dishes. It has personal resonance for the people involved – making it unique.
Babette neither profits or makes a loss on the meal (for reasons I don’t want to go into, otherwise it gives a key detail of the plot away.) The ‘outcome’ is that all the guests end up very happy.
In this current climate, it is all very easy to become enveloped in the ‘costs of caring’ and operationalising care. But this is of course to take away something very special which you can’t bottle.
Choice is heavily emphasised in English dementia policy. Thinking about it more, choice is an inevitable consideration when the discussion becomes preoccupied that accounting phenomenon known as ‘scarce resources’. It is a political drive which can lead to rationing.
On the other hand, how much would you value ‘mercy’ and ‘compassion’ at? It is easy to know the cost of many things, and the value of nothing; and this is particularly so in residential dementia care I feel.
This quote for me summarises for me much of a shift towards a much healthier way of thinking for all of us:
I’m sorry I’m not the most interesting Jeremy in British politics right now – but I do have the most interesting job, and there is no greater privilege in government than being responsible for our NHS.
To do that I’m supported by a fantastic ministerial team.
So let me start by thanking Alistair Burt for his avuncular kindness, Ben Gummer for his youthful energy, Jane Ellison for her good-natured calmness, George Freeman for his great passion, and David Prior for his worldly wisdom – what a team and I am lucky to have them.
My day as Health Secretary usually starts the same way.
When I arrive in the office there’s a pink folder waiting for me on my desk.
It contains a letter from a member of the public about something that’s gone wrong in the NHS.
Of course these letters are not typical of much brilliant care that happens every day in our hospitals and surgeries.
But I know that if I ignore the things that go wrong, others will too.
I’ll never forget one letter.
A lady wrote to me about her brother who worked as a call centre manager.
He went to hospital for an operation because his back was in agony from a pinched nerve.
Things didn’t go well, including a feeding tube inserted incorrectly, a catheter left blocked for 2 days and cries for help left unanswered in what ended up being a horrible last two weeks of his life.
As Health Secretary you have a very simple choice.
Do you ignore these problems and try to sweep them under the carpet or do we confront them head on and sort them out?
It’s a political choice, too.
Because it’s never comfortable for any government to admit when things go wrong.
But if you care for something – as David Cameron always has for our NHS – you want it to be the best.
I’ll tell you someone else who wanted it to be the best. Nye Bevan, the Labour Welsh firebrand who set up the NHS in 1948 – four years after a Conservative Health Minister suggested it.
Now Bevan would probably turn in his grave if he knew he was being quoted at a Conservative Conference.
But he used a good phrase to explain what he was trying to do.
He said he wanted to ‘universalise the best.’
If the NHS is about equity, it has to be about excellence.
If someone wealthy lives near a hospital with problems, they have alternatives.
But everyone else depends on that hospital.
And if we don’t do everything in our power to improve the quality of that hospital we betray them – and we betray the founding vision of the NHS which says that however fraught your life, however frail your voice our society has not forgotten you because we have an NHS.
The vision of Nye Bevan before.
The vision of a one-nation Conservative Party today.
But a vision that, in office, the modern Labour party forgot.
Their pride in having set up the NHS blinded them to the dangers of ignoring poor care.
Targets mattered more than people.
Good news mattered more than good care.
So when we faced up to the problems of Mid Staffs – which happened on Labour’s watch – they said we were ‘running down the NHS.’
They even tried to vote down the law that set up an independent Chief Inspector of Hospitals.
The true party of the NHS insists on high standards for patients in every corner of the NHS, however tough and challenging that might be.
And although there is much still to do, the results so far speak for themselves.
24 major hospitals have been put into special measures in the two years since the Francis Report into Mid Staffs.
People said no one would want to work at those hospitals.
That they would sink in a spiral of decline. That things would go from bad to worse.
Instead those Trusts changed their boards, recruited hundreds of doctors and nurses, and transformed the care they give. 9 have already come out of special measures and according to one study up to 450 lives are being saved every year as a result.
So let’s recognise the brilliant work of the doctors and nurses at Basildon, Tameside, King’s Lynn, East Lancashire, George Eliott, Bucks, Goole, Lincoln and Heatherwood and Wexham Park who have worked so hard to turn their Trusts round.
Across the NHS the effort to learn those lessons and improve care has never been higher. And I want to pay tribute to some of the achievements in the last 5 years.
Record numbers of doctors and nurses.
MRSA and CDiff rates halved.
Mixed sex wards eliminated.
Cancer survival rates at a record high.
Maximum waiting times introduced for mental health.
A million more operations every year.
And public satisfaction going up, now at near record levels.
Last year the independent Commonwealth Fund said that under the Coalition our NHS had become the best healthcare system in the world – better than France, better than Germany, better than the US – and here’s something for rugby fans – better than Australia! – so let’s hear it for all 1.3 million NHS staff working so hard in such challenging circumstances – the nurses, cooks, surgeons, cleaners, clinicians, physiotherapists, mental health professionals, porters and volunteers.
We are proud of every single one of you.
And not just the NHS – let’s recognise those working for local authorities to support our vital social care sector and public health programmes.
As you struggle with the pressures of a rapidly ageing population, you too have had many successes.
Integrated care finally becoming a reality thanks to the Better Care Fund.
Smoking rates at an all-time low.
Teenage drinking down and drug use halved in decade.
Teenage pregnancies at a 40 year low.
Yes the gaps between richer and poorer areas are still too high but we are making progress – and Conservative governments and Conservative Councils will never allow young people to have their future taken away by accidents of birth, or debt, or dependency, or addictions which destroy their dreams and take years off their lives.
I have a simple plan.
I want our party, the Conservative Party, to be the party of the NHS.
Some people listen to our opponents and think differently.
So we have to prove it.
And we are.
For two elections in a row, David Cameron and George Osborne promised more money for the NHS than any other party.
The extra £10 billion we have committed to the NHS this parliament is a massive commitment in the face of the worst deficit in our peacetime history.
But what Conservatives know is that a strong NHS needs a strong economy.
We also know high quality public services are not just about what taxpayers put in – they are about what the public gets out.
That whether it’s schools, or police, or hospitals the truly progressive party is the one that fights for higher standards and tackles problems head on.
Like the issue of people who die when they shouldn’t because they are admitted to hospital over a weekend.
When we said in our manifesto, we were committed to 7 day services, it wasn’t just about the convenience of evening and weekend GP appointments, important though that is.
It was to end the scandal of 11,000 excess deaths each year because of what is known as the ‘weekend effect’ in hospitals.
We are not asking junior doctors to work longer hours – that wouldn’t be safe.
Nor is it our intention to cut doctors’ pay – and it is utterly irresponsible to try and scare people into believing we are.
But we do want to support the many doctors who do work weekends with properly staffed shifts, safe working hours and 7 day diagnostic services so that patients are not put at risk.
So I say to those people working very hard right now on the frontline, stand beside us as we address this.
What’s good for patients is good for doctors, so be our partners in building the safest, highest quality healthcare system in the world.
Now safe care is not just about weekend services.
How many of you know that there are around 200 deaths in our hospitals that could have been avoided every week?
We’re no better or worse than other countries – but that’s like a plane crash a week because of mistakes we shouldn’t be making.
Part of the reason is that across the world, often the culture in hospitals is wrong.
Put simply we make it too difficult for doctors and nurses to speak out about poor care.
Too many worry that if they own up to making a mistake or blow the whistle on poor care they will be fired – as they sometimes are.
As a result not only do we cause patients and families untold anguish as they search for the truth, we lose the chance to learn from those mistakes.
In our hospitals we need an honesty culture not a blame culture – which is why I asked Sir Robert Francis to do the first ever independent review into whistleblowing.
Some people say we don’t have enough money in the NHS to deliver the high standards of care we all want.
But it isn’t a choice between standards or money.
If someone catches MRSA in hospital, they stay in hospital for longer costing the NHS more money.
Safer care costs less, not more.
So let’s eliminate the waste from unsafe care and like the rest of the public sector make efficiencies and raise standards at the same time.
Our best hospitals like the Salford Royal down the road, Frimley in Surrey and Northumbria show us it can be done, so let’s learn from them and never waver in our commitment to high quality care in every corner of the NHS.
Now I want to talk about GPs.
Let me tell you about a wonderful GP in Essex.
Every week he asks his practice nurses to write the names of any patients they are worried about on post-it notes.
He then personally calls them to check up how they are.
We have many GPs like him.
But many more who want to be like him, but find they simply can’t deliver that kind of personal care because of targets and tick-boxes and rising appointment lists.
That kind of personal, proactive care should not be a relic of a bygone age.
It’s how we’ll make the NHS sustainable by keeping people healthy and happy at home without needing expensive hospital treatment.
So on Sunday we set out plans for a new contract that will support GPs to deliver evening and weekend care by working with other local surgeries and clinical staff.
We also announced a £750m scheme to improve primary care premises and technology to allow surgeries to expand and modernise their services.
And it’s why we are backing the NHS England Five Year Forward View which will connect the services offered by GPs, local hospitals and social care system to offer integrated care closer to home.
Right for GPs, right for the NHS and the social care system – and most importantly right for the patients.
Let me finish with a point about the culture in the NHS, perhaps the most important point of all.
If we’re going to change the culture to make it more focused on patients, governments too are going to have to change the way they run it.
The NHS is the fifth largest organisation in the world – only beaten in size by McDonalds (now you weren’t expecting the Health Secretary to mention McDonalds were you?), and also Walmart, the Red Army and the US Department of Defense.
Faced with such a large bureaucracy, health secretaries of all parties – quite understandably – have tried to make changes by introducing targets.
Individually those targets have worked – bringing down waiting times, speeding up A & Es, improving cancer care and so on – but collectively they have undermined the professionalism and sense of vocation that should be at the heart of medicine.
Now I’m not going to scrap every target because patients should never have to wait too long for treatment.
But we do believe peer-review, transparency and openness about performance is a better way to drive up standards than endless new targets.
So last year I launched a new website, MyNHS, where we publish more information about NHS performance than any other healthcare system in the world.
You can see how safe your local hospital is;
how good the food is;
how good your local GP surgery or care home is;
the mortality rate for your surgeon
and over 693,000 other pieces of data.
From next May we will go further with assessments on MyNHS about the overall quality of mental health and cancer care, area by area,
and because we still have too many avoidable deaths we’ll also publish avoidable death rates hospital by hospital.
Some people have criticised this as ‘naming and shaming’ – but there are no sanctions or punishments for those with low scores, just the opportunity to improve.
Transparency for patients, not targets for politicians.
A new culture where patients always come first.
Conference, our healthcare system has always faced challenges.
And our strongest weapon in the face of those challenges has always been our willingness to innovate.
We discovered penicillin, we pioneered anaesthetics, we made the first hip replacements possible and we unravelled DNA.
We gave Britain the NHS – and the world its first universal healthcare system.
And we’re not stopping.
We will soon be a world leader in curing rare diseases with our genomics programme;
a world leader in using transparency to drive up clinical standards;
a world leader in improving hospital safety.
All backed with the resources of a strong economy only a Conservative government can deliver.
Some say with pressures mounting and money so tight, we need to rein back our ambitions.
But I say the only way to meet the challenges we face is to raise our ambitions, face the storms and draw strength from the wonderful commitment of NHS staff and the British people who stand foursquare behind them.
Because with a one nation Conservative government, for our NHS the best is yet to come.
And here was the reaction of Richard Humphries, Director at the King’s Fund:
The phrase is, of course, as meaningless as a ‘cure for cancer’, but equally trips off the tongue for corporate fundraising purposes. Like there are many different forms of cancer, like breast, ovary or bone, there are many different forms of dementia, like Alzheimer’s, frontotemporal or HIV.
It’s clear not everyone is going to be a winner from the G8 Dementia Summit promotional package. The write-ups of the dementia research strategy have included ‘the usual suspects’ from “Pharma-friendly communities”, with a token sop to research for wellbeing.
The G8 Dementia Summit is an extremely good way of promoting dementia as a worthy public health issue. Many passionate campaigners will indeed take to the stage to explain, often in very personal terms, why dementia is an incredibly important issue for them. It has become extraordinarily difficult not to know somebody who, in one way or another, is touched by dementia.