Simon Duffy

Thoughts, Bemusements & Arguments

Month: September 2015

We’re Getting Older – Don’t Panic, Don’t Panic!!

Some days seem to have a curious symmetry to them, and this week I have had one of those days. It began in the heart of the Whitehall and it ended in a community radio station in East London; but the theme at the heart of the day was constant: what does it mean that we are now living longer?

The first discussion was a roundtable with some of the leading academics and experts in health and social care. (If you are wondering why I was there then you are not alone; I don’t know either, but I was certainly happy to have been invited.) It was chaired by the excellent Professor Martin Knapp of the London School of Economics and we were being asked to think about the implications of ageing on health and social care.

I was asked to say a few words about the impact of longer lives on our ability: “to provide and procure care” although, as I tried to argue, I think this is entirely the wrong way to frame the question. The real question is “how do we support each other as we live longer.”

What I tried to communicate was that there is no evidence that our growing health, and our longer lifespans, will create any crisis. These facts should be a source of celebration. Yet, there is almost no social change, even social progress, which cannot be turned into a crisis if it’s handled in the wrong way.

In my presentation I used data from a report by The Centre for Welfare Reform that we will be publishing in a few months. I had carried out an analysis of of disability, healthcare, social care and community capacity in Barnsley, where:

  • 2% of the population were in very bad health
  • 7% were in bad health
  • 13% had a disability (this group will overlap with the first two to some extent)

Barnsley spent £60 million on social care, however this figure is dwarfed by the care that the citizens of Barnsley provide to each other without pay.

If Barnsley had to pay for the support that is already being provided free, by carers (the official jargon for family and friends) then it would have to spend about £600 million. In other words the support provided by families is about 10 times greater than the support paid for by the community via taxation.

Furthermore, we can go on to estimate how much time and energy is potentially available to the town – what we could call its ‘community capacity’. You can do this by looking at how many people live in Barnsley (about 250,000) and then taking away all the time spent on being a child, time lost to paid work, time in education, time spent caring and time used for ordinary amounts of rest and leisure. This leaves you with an estimate for how much ‘community capacity’ is available. For Barnsley that is equivalent 65,000 whole time equivalent people, with an economic value of over £1 billion.

There is an army of community capacity potentially available to any community (unless its working too hard) and this capacity is probably over 20 times greater than what is spent on social care.

We are society with immense financial wealth, in addition we already have all the human capacity necessary to provide the care and support that we need to look after each other. We will all go through the shared human experiences of sickness, age, disability and death; but we certainly have the resources necessary to ensure that we can all do this in ways that ensure our dignity and mutual respect.

If we focused on our immense community capacity available then there would be no sense of crisis. However community capacity is undermined by a series of negative factors that are driven by Government policy and by the interests of the powerful:

  1. Cuts to social care – Local government funding from central Government has fallen by more than 30% in 6 years and is projected to fall further. Central Government funding used to provide 75% of local government finance. Cuts to social care have been deep and we have seen the number of people supported fall by well over 30% in the same period. I assume that local Government has had to cut its most efficient and low cost supports first, leaving it with a growing percentage of its budget invested in expensive and institutional provision, which is harder to cut. I do not see how the obligations of the Care Act 2014 can be balanced with the desperate situation of local government.
  2. Means-testing of social care – The extreme means-testing of social care does what all means-testing does – it reduces social solidarity and encourages people to divest themselves of their own wealth if they are at any risk of needing social care. This further undermines community capacity and faith in the community’s capacity to support people to get the necessary additional finances they need when illness or disability develops.
  3. Inequality and poor productivity – The UK is the most unequal country in Europe with low productivity and high employment rates. Or to put this another way, more people are having to work longer hours to maintain even a very modest income. For instance, increasingly both partners in a typical family need to work to maintain a modest income, leaving less time for caring or for citizen action. Economic inefficiency and extreme inequality both have the impact of minimising available time for citizen action and community capacity.
  4. Workfare and the collapse of the voluntary sector – There are two powerful but inane dogmas that dominate public policy in the UK: (1) the only useful activity you can do is earn a salary and so pay taxes and (2) the best people to find people work or volunteering opportunities are the DWP or their private-sector agents. Clearly these ridiculous assumptions undermine our ability to tap into people’s real gifts and skills.

So it seems we are in the process of turning what is an opportunity for a longer richer lives into a severe social crisis. We lock a higher proportion of our increasingly limited financial resources into professionalised and institutional care; so we will then be only able to offer support to fewer numbers of people who will be in severe crisis. Alongside institutional care, micro-institutionalisation and the misuse of technology to ‘keep people safe’ will probably grow. At the same time fewer families will feel that they can afford to take care of their own relatives and will so demand ‘care’ from a system that will not be able to offer them support until they reach breaking point. The ongoing pressure to allow euthanasia is consistent with this crazy system problem.

The sad thing is that, while there are so many clever and well intentioned people in the central and local government, it just seems impossible to shift discussion away from the minor problem of ‘funding social care’ to the major opportunity of ‘supporting community capacity.’ It is cynical to think that this is only because a crisis is much more useful to the political elites, but Mencken’s often quoted proposition does sometimes feel so true:

“The whole aim of practical politics is to keep the populace alarmed (and hence clamorous to be led to safety) by menacing it with an endless series of hobgoblins, all of them imaginary.”

Perhaps, but I hope this is not true, the powerful do not want to recognise that releasing community capacity is about freedom and empowerment. The real solutions we need – those generated by people, families and communities – all require freedom and creativity in order to exist. The great innovations we are seeing from organisations like PFG Doncaster, WomenCentre, IBK Initiatives, Best Buddies UK, and so many more, are all rooted in an awareness that we are free citizens who can choose to act to benefit ourselves and our community.

Capacity is rooted in the actions of free citizens, working together in community. Such capacity cannot be bought, it cannot be bossed, it can only be enabled, supported and liberated.

Despite my fears it was encouraging that so many in the discussion did share my sense of disquiet at the danger of accepting inequality and an on-going public service crisis as the inevitable background to policy-making. But one could still feel the gravitational pull in our discussion of these hobgoblin problems: the fear of increased costs, the fear of increased rationing and fear about what will happen to us at the end of our lives.

After this discussion I was lucky enough to be invited to East London Radio, to be interviewed by Mervyn Eastman. Mervyn Eastman is an inspiring leader and social worker who has established the Change Agents Coop with the wonderful Cheryl Barrott. The Centre for Welfare Reform has recently joined the Coop as an organisational member.

Together we discussed how the idea of citizenship must become central to our thinking about ageing. Citizenship, everyday citizenship, is the foundation for building a good life for ourselves and building good communities together. We explored how old age was not a problem; but a society that insists on treating it as a problem will certainly end up creating one.

What made this radio interview especially sweet was that I was able to indulge my love of music. A rather sad admission on my part is that I have always dreamed about what I would choose if I was ever invited on Desert Island Discs or on Radio 3’s Private Passions. For East London Radio I picked:

  • Communication Breakdown by Led Zeppelin
  • The Nightwatch by King Crimson
  • Anyway by The Roches
  • A Survivor from Warsaw by Arnold Schoenberg

As I left the studio, to head home to Sheffield, I found myself in the community cafe and bookshop that was also the home of the community radio station. On the shelves were some fantastic European novels I’d not heard of and so I indulged myself by buying 4 books to take home.

So my day ended with this sense of contrast. On the one hand, in the bowels of Whitehall, intelligent people were struggling, against the grain, to stop the system turning old age into a new social problem. Meanwhile, on the streets of East London, ordinary people were busy building, sharing and supporting one another to lead richer, better lives.

As ever Christ’s words help. The Vulgate puts it as “sufficit diei malitia sua” which could be loosely translated it as: Start by tackling today’s injustices.

If Government really wants to help us ensure that we can take good care of each other in the future then there are four pressing problems it could tackle now:

  1. Protect social care funding
  2. End social care means-testing
  3. Radically reduce income inequality
  4. End the stigma and control of the DWP’s benefit systems

Do those 4 things and human capacity will flourish and many of tomorrow’s problems will never arise.

Time to Rethink Charity

Charities are in the news. Many seem to be failing, failing as businesses, failing in standards or failing in their role as advocates. Standing back, we can see two tendencies, one very negative, the other potentially positive, although currently much weaker.

The negative trend in the UK is the on-going collapse of the public and voluntary sectors and the invasion of large private organisations who are privatising Whitehall, the NHS, schools, local government and even the voluntary sector. For some this is called ‘modernisation’ but it is hard to see what is so modern about disastrous and corrupting inefficiency of projects like the Public Finance Initiative, the Work Programme or the inane procurement regimes which drive out community organisation and true innovation.

Again and again we find that when the public sector tries to harness the ‘dynamism’ of the private sector it often finds itself on the losing side of the deal. This is not surprising, when one side of the deal comes motivated to maximise profit, while the other is just following procedures, then expect a mess. Neither side is to blame – oil and water do not mix.

One of the saddest features of this collapse is the way in which so many charities, many with long and noble histories, have found themselves climbing on board the privatisation bandwagon. Today many charities are no more than inefficient private business – with high CEO salaries, poor terms and conditions for staff and bureaucratic cultures. There is nothing dynamic and creative about this new kind of voluntary sector – often there is nothing particularly voluntary about it either.

However this is not the full story. There are also a new forms of organisation emerging, ethical businesses, who do not just focus on profit; and community organisations that are dynamic, entrepreneurial and creative. For organisations like these the old charity model no longer seems to apply.

This old charity model still dominates our legal structures, and it fits into an understanding of civil society which goes something like this:

  1. The public sector provides core public services – from policing to healthcare. The sector is managed and controlled by politicians, who are accountable to the public (every few years).
  2. The private sector provides services or goods that people pay for. It is commercial and focuses on profit. It survives only when we buy what it offers.
  3. The charity sector harnesses our citizenship, enabling people to give, time, money or passion to supplement core public services.
  4. In particular the governance of charities must be voluntary, for this is meant to make it immune to the profit motive (and hence it is protected from corporation tax).

This model may have worked reasonably well in the past. But it is not clear how these distinctions hold when:

  • Government stops providing services and starts to buy them (what is called commissioning).
  • Instead of services people are given budgets to buy their own support (what is called personalisation).
  • Some business are choosing ethical objectives (what is called social enterprise).

It would be easy to declare the whole thing a farce, to dissolve the distinctions and to leave the market to sort everything out. Let people and government buy what seems best, let businesses grow, transform and become ethical. Let charities wither, if they no longer offer ‘good value’.

But, as G K Chesterton said, “Don’t ever take a fence down until you know the reason it was put up.” In this case the reason for the strong distinction between the profit motive and the ethical motive is that it doesn’t take long before the profit motive wins hands down. Profit enables businesses to buy political influence, control and even the appearance of being ethical. This is the reason that the likes of SERCO, A4E and G4S keep winning contracts from the public sector, while the small, the local and the ethical struggle to survive.

Instead of abandoning the distinction between the profit-seeking and the charitable it may be better to redefine it. In fact there may be a much better distinction available to us.

Today, when we use the word ‘market’ we usually think only of commercial exchange – buying and selling. The term has become captured by narrow liberal economics. However if we go back to ancient Athens and revisit their version of the market – what they called the ‘agora’ then we find, not just commercial exchange, but a whole range of human activities: teaching, praying, playing, politics, government. The agora is a public space and it was marked off by a series of sacred marker stones which could not be moved and beyond which no private property could be claimed.

So Athens, one of the most creative and fruitful places in human history, protected its public spaces from private enclosure. However Athens did not put all of the activities of the agora under control of the ‘demos.’ It was not public (or democratic) control that made something public – it was its appearance in the public space. It was the transparency of these affairs, as opposed to their privacy, for privacy is the essence of the private. The agora was a space in which we came outside and behaved as individual, diverse and interacting citizens.

As an aside, it is interesting to note that the assembly, where the people met to make democratic decisions in together, was actually outside the agora – on a hill called the Pnyx. The Pnyx overlooks both the agora and the Acropolis, which was also a distinct site, and which was protected for the sacred purpose of worship. The agora, the space for free citizen action, was therefore distinct from both those areas where people came together to act as a whole people – in making decisions or worshipping God. The agora was plural, diverse and sacred.

Can we then replace the profit-voluntary distinction with a different public-private distinction?

Perhaps we should distinguish what makes something public from what makes something private, and in particular we should work hard to define and protect those things which are public – which we all share together – from those things that are private.

Here are some thoughts on what measures we might use to guard the public:

  • Local – Things that are rooted in the local are more reliable than the national or international where only a brand, a logo or profile is visible.
  • Transparent – When we aim to serve the public we will be quite happy to let people know our salaries, our savings, our funding and our workings.
  • No copyright – If we are interested in the public interest we will not want to protect private property rights and milk citizens for years to come.

Perhaps a further advantage of this approach might be to help us think about what David Miliband used to call “double devolution” the shift in power back to people and to communities. Devolution to the individual means that some public services need to be converted into private entitlements – in particular incomes sufficient to meet our basic needs. However other public services need to be converted into public goods – resources that communities themselves can examine, support or transform.

In this way we can overcome the reductive simplifications of Marxism with its ludicrous suspicion of private property and the very natural human activity of trade. Yet we can also remember that we also need public goods, safeguarded from the invasion of the private, that there to be enjoyed – in one way or other – by all of us.

Assisted Dying or Nazi Eugenics

Spot the difference.

Here are the words of the Assisted Dying Bill 2 which is currently being promoted by Rob Marris MP in the UK Parliament:

Subject to the consent of the High Court (Family Division) pursuant to subsection (2), a person who is terminally ill may request and lawfully be provided with assistance to end his or her own life. Subsection (1) applies only if the High Court (Family Division), by order 5 confirms that it is satisfied that the person:

  1. has a voluntary, clear, settled and informed wish to end his or her own life;
  2. has made a declaration to that effect in accordance with section 3; and
  3. on the day the declaration is made: (i) is aged 18 or over (ii) has the capacity to make the decision to end his or her own life; and (iii) has been ordinarily resident in England and Wales for not less than one year.

Susanne E Evans, in her book Forgotten Crimes wrote:

“…a [Nazi] Ministry of Justice Commission on the Reform of the Criminal Code drafted a similar law sanctioning “mercy killing” of people suffering from incurable diseases. The law read, in part:

Clause 1 Whoever is suffering from an incurable or terminal illness which is a major burden to him or others, can request mercy killing by a doctor, provided it is his express wish and has the approval of a specially empowered doctor.

Clause 2 The life of a person who because of incurable mental illness requires permanent institutionalisation and is not able to sustain an independent existence, may be prematurely terminated by medical procedures in a painless and covert manner.”

We are not quite at the point where most people agree with Clause 2. However the proposed Assisted Dying Bill proposed by Lord Falconer is essentially identical to Clause 1 of the Nazi Bill described by Suzanne Evans and which was the first stage in the legitimising the T-4 Action (which killed over 100,000 people with disabilities). The gas chambers which had been used to kill people with disabilities were then disassembled and taken to concentration camps and used on the Jews.

The connections between euthanasia, eugenics and the Holocaust are profound. Either life is sacred and its dignity should never be undermined or all is relative and we will leave the powerful to decide who counts as important and who doesn’t.

If someone really believes their life is worthless they are just wrong.

Dr Andrew Lucas and Perpetual Life – A Film

I awoke this morning from my dreams with the idea for a film in my head. I am no script-writer and I will never find time to complete this project, so I share it here. If you want to turn it into a film or something else then please be my guest.

A shot of London – subtitle: Year 2166

We pan over London which now appears even shinier, and the streets are full of people celebrating the victory of England in the World Cup. An open top bus (suitably modernised) floats through the crowd. On the top are many familiar faces, including Wayne Rooney and many other members of the current England team.

Now cut to inside St Paul’s Cathedral, where there is a celebratory service going on, again we see the heads of Rooney and his team mates, we also see that the audience is full of beautiful young people, happy and genuinely attentive. They watch a young and handsome Archbishop of Canterbury who is giving a sermon.

Archbishop:

“How great is Great Britain! Yet again we are victorious at football. Yet again we prove that, truly, we are building Jerusalem here, in this green and pleasant land.

“And it is here in Britain that the great discoveries have been, the great steps forward in human progress. 400 year ago St Adam Smith uncovered the workings of the market. Only then did men come to understand that progress depends upon selfishness. This revelation then opened up the age of progress, industry and happiness.

“300 years ago St Charles Darwin uncovered the true workings of nature. Now we understand that we are not, directly, creatures of God, but of evolution, and that progress comes from the on-going battle of the strong to overcome the weak.

“Then, just 150 years ago, our living saint, Dr Andrew Lucas, made the next great British discovery.

Cut to an earnest young man sitting amidst the congregation who nods and smiles modestly in recognition of the Archbishop’s comments. Cut back to Archbishop who is continuing with his sermon.

“Dr Lucas has discovered the essence of life itself, the life force, the vital link between physics, chemistry and biology. Lucas has discovered that element of our life blood which makes life possible. Using his discoveries Britain then began its programme of extending Perpetual Life to everyone. The doors of heaven are now truly open.

“All these great discoveries have had to be matched by an evolution in our religion. Today the New Church of England has managed to uproot the heresy of life after death. We’ve gone back to the Bible and demonstrated the real meaning of Christ’s sacrifice. It was not some mysterious life after death that he was offering us – instead it was a message about the real possibility of heaven on earth. Today more and more people are taking advantage of the opportunities of Perpetual Life, as Dr Lucas and his team work to make this new technology available to everyone.

“So, let us thank God for England’s victory in the World Cup. Let us thank God for Dr Lucas and his brilliant discoveries that have made all this possible. And let us thank God for Great Britain, the country that has opened the doors of heaven.”

Congregation enthusiastically clap the Archbishop. The Camera pulls back from St Paul’s and pans to St Thomas’s hospital which is now one of the grandest building along the Thames. We are in a teaching theatre, where junior doctors are being educated, and are being addressed by a beautiful young (female) professor of medicine.

Professor of Medicine:

“Welcome everyone to your first course in the medicine of Perpetual Life. As trained doctors you will already know much of what I am about to show you; but it is always helpful to be reminded of the foundations, that underlie our vital science. So let us begin by watching this short film.”

We now watch the first scenes of an introductory teaching film on Perpetual Life. Suitable documentary images accompany the narration.

Film narration:

“In 2016 UK Parliament began the process of legalising euthanasia (or as it is now called Happy Death). The first step towards Happy Death was to allow people the right to end their life, under medical supervision.

“It was then that a brilliant young doctor, Dr Andrew Lucas, decided to specialise on end of life medicine. At first his programme focused on helping people be genuinely happy as their life ended, new drugs were developed and the process was made not just painless, but pleasurable.

“However, naturally, Dr Lucas also began to wonder whether there might not be other advantages to the Happy Death programme. A dead body can teach us much, a dying body can give up its organs to help others. But what if a living body could give up it’s very life force? What if life itself could be transferred from one individual to another?

“It was this profound insight that opened up the field of Perpetual Life (or PL). Today a willing patient can transfer their life force to another person, to extend their life and even to maintain them in state of perpetual youth and health.

“Dr Lucas himself, as a brave pioneer, first began to carry out these experiments upon himself and so he became the first person to benefit from PL. Then of course he turned to the leading minds of the time to win support. If it was not for the support of Heaven TV and the vision of its owner Mr Rupert Murdoch then his discoveries may have gone to waste. But after joining the PL Programme Mr Murdoch became its primary patron. Leading politicians joined him on the programme, and so his support grew. Today all our leading writers, scientists, film stars and sporting heroes are proud participants in the PL Programme – staying young, living longer and working to build a better world for everyone.

“Of course there are still mysteries to uncover; for just as it took many years to discover DNA, and so explain the truth behind Darwin’s theory of evolution, so we have not yet fully understood the mechanism by which the life force exists.

“Dr Lucas is continuing to work on the development of an artificial version of the life force. He will be successful; but until that time the PL programme must continue to exist in partnership with the Happy Death programme. We still need some people willing to give up their lives, in order to extend the lives of the best, the beautiful and the successful.

“We are also still limited by the constant of life – the 70 years rule. For while the life force can be transferred, the transfer value of life is set at a maximum of 70 years, and varies in accordance with how much life has been sacrificed. Life is extended by 70 minus the years already lived. So this means the most useful lives are those of the youngest.

“So while everybody wants to join the PL Programme we are not yet able to offer everyone the joys of the programme. Instead we must appeal to those who are ill, who are disabled or unhappy. We must offer them the chance to sacrifice themselves for the greater good. Fortunately the technology of Happy Death has so improved that many more people are willing to step forward and offer their lives in sacrifice. For many people a few months of extreme happiness is well worth the loss of many years of life.

“Today the systems of Quality Adjusted Life Prices (QALPs) enables people to evaluate their options and to choose to trade in their life for a Happy Death. This is a independent, market-based system, all carefully overseen by NICE (the National Institute for Care Excellence).”

“Life and death has always seemed like a lottery. The best of humanity can be unfairly struck down, while the worst can hang on for decades. Today, thanks to the expertise of doctors like you, thanks to the patronage of Mr Murdoch and Heaven TV and thanks to the good people at NICE, death is being tamed. Death is now fairer and perpetual life is possible for the brightest and the best.”

At this point the film could develop in a number of different ways. Here are three options:

  1. We follow Dr Lucas becoming angrier with himself and with the system he has created, as he discovers, yet again, that he cannot overcome the life constant or develop the life force artificially. The film follows his efforts to pull down the system around himself and the way in which powerful forces within the media, politics and economics will not allow him to do so. [or]
  2. We follow the story of one of the members of the PL community who is finding that they can no longer earn the money necessary to stay on the programme. They become convinced that the high price and limited supply of PL is a plot to enrich the rich. However, by exploring what really happens to those outside the programme, and those on the Happy Death programme he discovers that in fact everything possible is being done to extend PL to as many people as possible (e.g. people are encouraged to give up their babies for HD at birth, people are being paid to join the HD programme, their family are being assured places on the waiting list for the PL programme, mental illness and suicide are being encouraged in low income families.) He then tries to share what he’s learned – but he is discovered and he is forced to join the HD programme himself. [or]
  3. We focus on a revolutionary movement, perhaps based in the North of England (say Sheffield), where people organise to overcome the powerful forces of the PL programme. This could involve a love interest story, where there is love between someone on the PL programme, perhaps in a position of influence, and a terrorist trying to tear the system down. This could also build on the idea that heretical religious groups continue to exist underground, who continue to spread their belief that life is sacred and that everyone is of equal value.

You may have much better ideas about where to take this story. But if you decide to make a film, book or play from this idea, don’t worry I promise not to sue you. However, if you do make any money please donate some to the disability campaigners who are fighting the Assisted Dying Bill:

http://www.notdeadyetuk.org

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