Notes from the Panopticon

Damart Days

Autumn is a second spring where every leaf is a flower ~ Albert Camus (1913 –1960)

Damart is probably the best-known manufacturer of thermal underwear in the UK. Every year, as autumn arrives along with the falling leaves, a Damart catalogue pops through the letter box. Until now my wife has thrown it in the bin. This year she has kept hold of it. She is starting to feel the cold.

We're neither of us old but we are "getting on". The delusion of immortality is fading. Aches don't go away. Pains and other symptoms begin to seem serious and could presage an illness that will stay.

When you read about the latest health scare or news that this, that or the other activity predisposes or increases the chances of being afflicted with this, that or the other condition, nothing is said about the fact that the best predictor of getting cancer or succumbing to a heart attack or a stroke or going bananas is getting old.

Now I'm not trying to be morbid or to depress anyone. I am quite happy most of the time. I am content to be "getting on" despite the disadvantages. The drawing in of the years, like the drawing in of the days, makes me reflect on how lucky I have been. How lucky I am.

I haven't achieved a great deal in my life. In many ways it's been an "also ran" sort of life, the kind of life that most people lead. Many of us try to bulk up what we've achieved but, personally, I don't see much point in that. I hope I haven't made too many people unhappy during my life and, if I've achieved that, then I'm glad.

Life continues to offer challenges and moments of excitement and novelty, and in my small way, I keep trying to push my horizons forward, learning new things and sometimes making new friends. Listening to other people, mostly through what they write, is a good way to avoid stagnation.

There are things that make me sad. I feel sorry for people whose lives are closed and limited, and who can never experience the richness which I've enjoyed by having the luxury of choice. My parents left Czechoslovakia when I was less than two years old and I often think of what might have been. The lives of generations of people in the Eastern bloc were crushed by a dynasty of greedy megalomaniacs who claimed to know best how lives should be lived. They didn't of course. They simply enjoyed power and control and the luxury that came with them.

Today, people continue to live under the heel of other megalomaniacs and in even more misery than the compatriots I left behind. These monsters ensure the continuation of poverty in much of Africa, the Middle East and South America and are responsible for many broken lives.

How quickly things change when tyranny subsides. Many people in South East Asia are joining the lucky generation, even in China. And India shows that it is not only dictators who prevent people escaping poverty and enjoying the freedom that general prosperity brings. It can be overweening bureaucrats too. Indians call them the abominable no men.

I am one of the lucky ones who lived in an open society in the 20th Century. I am horrified by how carelessly that openness is being thrown away.

At the beginning of this piece, I mentioned the delusion of immortality which dominates our lives. I should also mention that many people cling to that delusion – in the face of all the evidence – by looking forward to an afterlife. (Remember that most suicide bombers are drawn into their terrible trade by the promise of an afterlife.) How much stronger we would be if we recognised that our lives are all that we know we have. Whether or not there is an afterlife, if we could just accept that life is the only thing we can be sure of we would, perhaps, recognise how very precious it is.

For me this is the very foundation of what is right and wrong. If I have nothing other than my own life, the same is true of every other person. If I fail to enjoy my life to the best of my ability, I have nothing. That is also true of every other person. So I should like to help everyone with whom I come into contact to enjoy their lives. Not to tell them how to live their lives – because their lives are theirs and not mine – but to offer a helping hand and to share. To share with absolutely everyone who wants to share with me. No-one is different: quick or slow, big or small, white or black, woman or man, weak or strong, old or young ...

Nothing big (it's far too easy to get it wrong) but in little everyday ways. The only true and lasting happiness, after all, comes from companionship with others.

    Damart days are good days for me. I hope they are good for you too – when you get there.

MMR Vaccine: Truth and Consequences

All other knowledge is hurtful to him who has not honesty and good-nature ~ Michel Eyquem de Montaigne-Delecroix (1533–1592)

This article was prepared before the current measles outbreak was announced. It is even more relevant now.

The MMR (measles, mumps and rubella) vaccine has been routinely administered to most one-year-olds in the US since the early 1970s. It was widely introduced into the UK in 1988. Ten years later, in February 1998, thirteen doctors based at the Royal Free Hospital in Hampstead published a report in the Lancet, alleging that the vaccine was linked to the development of inflammatory bowel disease and autism. (The same research team had already suggested in 1995 that MMR was associated with Crohn's disease, although this claim had quietly been abandoned.) The new report was based on a finding that eight out of twelve children referred to the hospital had suffered from sudden onset of developmental disorders very soon after the administration of the vaccine.

The Guardian, at the time, stated that: "A medical study suggests today that there could be a link between the measles, mumps and rubella vaccine (MMR) given to children in their second year of life and inflammatory bowel disease and autism … They also found that the behavioural changes in the children which are typical of autism, such as forgetting the basic language they had just learned, began within days of their MMR vaccination".

Report discredited

The doctors' report was discredited by the investigative journalist, Brian Deer, who commented that: "even a superficial examination of the report revealed crude errors, inconsistencies and omissions which might properly have been challenged by the Lancet's editor". Instead of such careful scrutiny, The Royal Free Hospital was quick to promote the report through a press release, a video news release and a press conference.

Deer's investigation, published in a Sunday Times special report and a Channel 4 documentary programme, revealed that Dr Andrew Wakefield, who fronted the study, was receiving payments from Richard Barr, a solicitor who was trying to bring a case (financed by the British Legal Aid Fund) against the vaccine manufacturers. The children cited in the doctors' report, were in fact associated with Barr and his action.

Undermined confidence

The effects of the controversy were to undermine confidence and to drastically reduce the uptake of the MMR vaccination. Between 1995, when information began to appear suggesting that the MMR vaccine was implicated in bowel disorders, and 1998, when the paper was published alleging the link with autism, the uptake of the vaccine fell from 92% (close to the World Health Organisation's recommended level of 95% for the protection of a population) to 88%. It hovered at about this level until 2001 when the case was taken up by the media with a sustained attack on the vaccine.

By 2003, the level of uptake had fallen to around 80%. By then, 12% per year of young children had been put at risk by a scare which proved to be unsubstantiated. And it took until 2005 to bring the uptake rate back to 84%, which is better but still more than 10% below the World Health Organisation's recommended level.

Harm done to the nation's health

It is difficult to assess the harm which this has done to the nation's health.

The chart below, showing the incidence of the three diseases, looks dramatic; incautious journalists might jump to the conclusion that we are in the grip of a mumps epidemic caused by the MMR debacle. They would be wrong. The rise in mumps cases is mostly in the over-15 age group – a group who (as children) were too young to benefit from the introduction of MMR. This is the normal type of epidemic which occurs from time to time and which blanket vaccination is designed to prevent.

There has also been a smaller – but still significant – rise in cases in the under-15s, which probably did result from the MMR boycott. With an epidemic among teenagers and young adults (for whom MMR was not available), and with parents avoiding MMR, young children are being exposed to mumps with no protection against catching the disease.

The second chart shows the infection rates of the other diseases in a little more detail by cutting off the top of the graph and the mumps spike. It shows that there was very little effect on infection rates during the problem period. Epidemics come and go, and luckily there has been no significant outbreak of measles or rubella during the period, as there was with mumps. However, the low level of immunisation has put children and unimmunised adults at risk, in the same way that young adults are currently at risk of catching mumps.

Dangerous diseases

All three diseases are dangerous and can cause serious long term consequences:

• mumps can cause sterility
• rubella can cause birth defects in babies whose mothers are infected during pregnancy
• measles can cause death; in 2006 an uninoculated thirteen-year-old (with an underlying lung condition) was the first child to die of measles in the UK for 14 years

Children who missed out on the MMR are growing up vulnerable to these diseases. More than 3000 of them have already fallen victim to mumps.

So how did we get here and what can we learn? The government, faced with the problem of falling confidence, did not handle the situation well.

Loss of trust

The first and most serious problem was that it had lost the trust of the public. This is not a problem peculiar to the MMR crisis. But it does show how important it is for a government to show itself to be honest and open. Without trust, it cannot carry out its job properly. Here are some factors which led to this disintegration of trust:

• The handling of the BSE crisis by the previous Conservative government which undermined faith in official scientific advice.
• The disastrous strategy used in the 2001 foot-and-mouth outbreak which led to the closure of the countryside and pyres of burning carcases – how could people trust a government that let things get so out of hand?
• The failure to address the growing menace of hospital acquired infections – most people knew someone who was affected.
• The failure to demonstrate that the huge additional resources which were being poured into the NHS were making a difference – this had a disastrous effect on NHS staff morale and undermined public trust further.
• The style adopted by ministers and officials when questioned about their policies and actions; this had become mealy-mouthed and defensive.
• The failure of Tony Blair to say whether his son Leo had been given the MMR. This undermined confidence in government advice and was a particularly crass version of the "do what I say not what I do" attitude. Blair should have known better. He was a father of a young baby and was dealing with a public fearful for the health of their children and had been given a unique opportunity to demonstrate confidence in the advice of government scientists – an opportunity which he flunked.

Richer parents

In addition, faced with a potential public health disaster, the government failed to try an alternative strategy. Instead of insisting that it was MMR or nothing, they could have offered separate inoculations, an option chosen by many richer parents (including the Blairs? – a later leak suggested that Leo had been given the MMR but by then it was too late). Offering an alternative to MMR, with a carefully-reasoned explanation of why the government felt it was right to choose the three-in-one, would have been so much more reassuring than the "we know best approach" which put thousands of children at risk.

Of course the government were not the only culprits. The more drama-driven elements of the press were all too keen to spread doom-laden predictions over their front pages, to ferment fear and insecurity in their readers. And we must remember who started the whole debacle. Scientists who do not follow proper procedure undermine respect for all scientific research.

And so children were put at risk by a three pronged failure:

• Shoddy science
• A hysterical press
• A mistrusted government

Luck may run out

There is a risk that the whole can of worms will be reopened now that Dr Wakefield and two of his colleagues (Professor John Walker-Smith and Dr Simon Murch) face a hearing before the General Medical Council. They will be questioned about the conduct of the research that underpinned their report. Let us hope that lessons have been learnt and – equally importantly – that no efforts are made to reignite the fears. So far we have been lucky, with only a limited impact from reduced immunisation. Luck may run out.

Everything in moderation – including Health and Safety

The wise man in the storm prays to God, not for safety from danger, but deliverance from fear. ~ Ralph Waldo Emerson (1803-1882)

I quote from a petition on the Downing Street website:

A 79-year-old disabled lady in the rural village of Urchfont, Wiltshire, has spent the last 8 years tending lovingly to a very small 'triangle' of land at the entrance to the village, including funding the plants from her own pension. She has now been told by council bureaucrats that she must stop unless she gets a licence, wears a fluorescent jacket, carries and places 3 signs in the road, and has a permanent lookout with her. Failing this, the plot will be tarmaced. Officialdom gone mad.

I urge you to sign the petition. Click here and you will find yourself speaking directly to Gordon Brown (almost).

This story is just one of many. Here are some more examples of officials bringing in rules or acting restrictively in the name of health and safety:

• Sarah Thompson of Keele University has conducted a survey of schools to identify activities which have been banned for fear of the children hurting themselves. These include playing conkers, football in the playground, and skipping.
• According to The Times, 7600 trees have been felled in the past 5 years for safety reasons in two London boroughs (with few replacements planted). Other authorities which are cutting down trees in large numbers include Manchester and Edinburgh.
• Local authorities are becoming increasingly concerned about their liability in the event of food poisoning when school groups provide food at functions, and are therefore restricting their freedom to do so. Village fetes run the same risk.
• Tesco prevented a clown from performing an act with balloons because a very small number of children are allergic to latex.

Why should the other 99% suffer

Let's examine that last example in a bit more detail. The incidence of latex allergy in the population is 1%. This is comparable with peanut allergy (no-one has yet suggested that peanuts should be banned but you never know…) The effect of both allergies is serious; it can be devastating and sometimes fatal. But this does not mean that the other 99% of the population should suffer.

The right strategies would be using appropriate warnings to enable sufferers to avoid risk and teaching the best methods of handling a reaction. Life is not fair and spreading disadvantage as widely as possible is not a sensible or a sustainable approach.

These examples of over-reaction to perceived risk are in the public domain. I would now like to focus on a largely-unknown instance of the unintended consequences of the spread of health and safety regulations. It should warm the hearts of many a die-hard Tory.

Anti-social behaviour

My father-in-law was chairman of a boy's club which specialised in adventure training. More important, it specialised in providing boys who had fallen foul of the law (often boys from Borstal institutions) with the opportunity to participate in adventure activities. These deliberately placed them in scary situations which they needed courage, stamina and self-discipline to overcome. They were well supervised and none of them came to harm apart from scratches and bruises.

The founder of the club was an ex-military man, a sergeant-major, and his adventure centre provided a brick in the wall which held back the tide of what would now be called anti-social behaviour. And it worked. An amazingly large proportion of the boys and young men who came to him from Borstal turned their lives around after the experience and "went straight". Overcoming scary situations, achieving physical goals, had given them confidence and self-respect for the first time in their lives.

Proper implementation

All this came to an end in 1993 when four teenagers died in a kayaking expedition off the coast near Lyme Regis. In this case, the company organising the trip had failed in its responsibilities. Its managing director was convicted of manslaughter, thereby proving that the legislation in place was sufficient.

The accident did not merit further legislation (proper implementation was enough). But after the tragedy, all adventure centres came under the scrutiny of health and safety. My father-in-law's club had no choice but to stop taking boys who were in danger of going off the rails. Instead, it changed into the equivalent of a leisure centre.

The founder of the club, the ex-sergeant-major, died recently. The congregation at his funeral was enormous, with people standing in massed ranks in the car park. Many of these mourners were men who had benefited from the opportunity to participate in his scheme, to test their mettle and go on to lead productive lives. We can only guess at the number of crimes committed because no more boys and young men are given the same opportunity.

Acute over-exertion

My point is this: everything we do carries a risk. Some of us will always be willing to take risks in order to lead richer lives. But none of us can do anything that does not carry some kind of risk. And avoiding risk carries a price. Without going out of our way to do anything unusual, we run the risk of being accidentally hurt:

• On the road: 271,000 people were injured in road accidents in 2005 (88% suffered minor injuries, 29,000 were seriously injured, and 3200 were killed).
• At work: 328,000 injuries occurred at work in 2005 (91% were relatively minor and resulted in less than three days off work, 28,600 were major injuries, and 212 were fatal).
• At home: there were 2,701,000 reported accidents at home in 2002 (the latest year for which figures are available), almost half of which were caused by falls. In 2004, there were approximately 3900 accidental deaths at home, again mainly caused by falls.

It would, of course, be much better if these accidents did not occur. Most wouldn't if we stayed in bed all day (and the 90,000 accidents a year caused by "acute over-exertion" would certainly be avoided). But I think you will agree with me that life would greatly impoverished.

Whenever we restrict what we do to reduce the risk of coming a cropper, we pay a price. And sometimes this price is too high. We must find a way of achieving a balance between the fearful, who encourage the extension of safety restrictions (for our own good they say), and those of us who are more adventurous and realistic about the dangers of life.

Evidence and hard facts

And I have an idea.

Before enacting rules that stop pensioners from making a garden for the pleasure of others, or prevent ex-soldiers from running courses to test the mettle of young men at risk of going off the rails, or stop clowns from twisting balloons into interesting shapes to entertain children, or insist that boys play conkers wearing goggles, or forbid girls skipping, health and safety officers and insurance companies should be required to submit proposals to an Ofcom-type regulator (Of-free?).

They should support them with evidence, with hard facts, to put their proposed restrictions into context. For example, officials should enumerate how many injuries and deaths they expect to prevent, and over what period of time, by cutting down trees in our city streets. The debate about each and every restriction would then be out in the open and the officials might think twice about some of their sillier ideas.

At the same time, in another example, insurance companies should enumerate how many accidental damage claims would be avoided by pushing up premiums to a level that make the cost of organising village fetes impractical.

If you have ever bought an airline ticket, or travelled by train, or hired a car, you will have agreed to forego rights and protections which you might have expected the supplier to provide. And you have to sign a release form every time you have a medical procedure.

There is no reason why we should not be willing to take similar risks when walking down the street. As Donald Rumsfeld said (sometimes you are right even if you are wrong), "stuff happens". A council's obligation should be limited to situations where it is negligent or has failed in its statutory obligations. It should not be obliged to have an officer standing by in case someone slips on a leaf that has fallen off a tree or is banged on the head by a conker.

This whole area needs a serious rethink. There should be a limit on the extent to which the excuse of protecting our safety is used to restrict our freedom.

Sign the petition here. You have until the 13th September.

Foot and Mouth 2007: Moment of truth* for DEFRA

Experience teaches only the teachable ~ Aldous Huxley (1894 – 1963)

DEFRA (aka the Department for the Elimination of Farming and Rural Activities) now has an opportunity to demonstrate that it has changed its spots.

It has long been vilified as one of the most intrusive and inefficient arms of government. Its insatiable bureaucratic demands, and the inability of its different sections to coordinate and share information, mean that farmers are subjected to repeated inspections and duplicated veterinary visits.

Despite all this data collection, DEFRA has proved itself unable to operate efficiently. In 2006, because of its chaotic office structures, it was months late in distributing the payments due to farmers; at one point, it admitted having 400,000 tasks left to complete. Most farmers were forced to borrow money from (and pay interest to) their banks in order to cover the shortfall.

Farmers have complained bitterly at the extra paperwork imposed by DEFRA's implementation of the animal passport scheme. Now, at last, there is a chance to show that all the pain has been worthwhile. DEFRA should have, at its fingertips, all the information it needs to nip the foot-and-mouth outbreak in the bud. It should be able to trace the exact movements of every single animal that has been affected. It should be able to identify every single animal with which the affected herd has come into contact. And it should be able to do this more or less instantly. If not, all the effort that has gone into the passport scheme has been a waste of time and money.

This time, there is no excuse. In 2001, decisions were made by the Blair government which, as ever, framed policy first and thought about it later. It failed to consult the reports prepared (at great expense) after the 1967 foot-and-mouth epidemic and therefore learned nothing from that experience. Now DEFRA has the animal passport information to hand, while lessons learned from the 2001 epidemic are comfortably within living bureaucratic memory.

If DEFRA fails to deal with the outbreak effectively, the minister in charge (Hilary Benn) should resign. There should also be a wholesale clear-out of the higher echelons of DEFRA. Gordon Brown should make it clear that he expects an exemplary response. Failure should not be tolerated. However unpleasant this crisis may be, our new government should see it as an opportunity to break with the past. It must ensure that the civil service does its job effectively; it must force it to face up to its responsibilities.

* el momento de verdad, or moment of truth, is – rather appropriately – the point in a bullfight at which the matador is expected to make a clean kill.

Picture credit:

by Steven, aged 9 - one of many pictures submitted by children affected by the 2001 foot-and-mouth epidemic.

www.visitcumbria.com/footandmouth.htm

Why do nurses hate Patricia Hewitt?

"We pity in others only those evils which we have ourselves experienced." ~ J-J Rousseau (1712-1778)

We all want a better NHS and the present government has spent a huge amount of money to effect improvement. In order to ensure that the money was not wasted, and to measure how much the spending is improving matters, measurable targets were introduced. These were intended to show, for example, that waiting times are falling. At the same time, strict budgetary controls were put in place to ensure adherence to the spending plans.

The unintended consequences of these policies have been frightening. Among the worst is the phenomenon of "gaming", which reveals much about the mindset of the people charged with our welfare.

Seriously ill patients left to suffer

To meet the target that accident and emergency cases should be seen within four hours, hospital managements have instituted policies that mean that newly arrived critical patients may be left to wait while less urgent cases who could safely be left but arrived earlier are dealt with first. In this way the less urgent patients do not exceed the four hour deadline. This reduces the number of potential black marks on the hospital's performance target. But seriously ill patients may be left to suffer risking the eventual outcome of their treatment and, sometimes their lives.

It has also been reported that patients not seen within four hours can be left almost indefinitely. They can only be counted as falling outside the target once, so there is no longer an incentive to see them at all.

Also, to delay the start of the four hour deadline patients can be left waiting outside in ambulances. The clock in the reporting system only starts to tick once the patient has entered the hospital. This means that the ambulances are not freed to return to service as quickly. But, of course this is not the hospital's problem.

To its credit, the government is trying to audit the situation better and is stamping out instances of gaming when they come to its attention.

Management ignores impact on patients

But the real question is: how can a group of people in a position of power and control believe that it is right to focus on achieving targets, while ignoring the impact on patients. At best, fearful and vulnerable people are left without support or help. At worst, health and lives are put at risk.

Another horror which has come to light is the instruction given to cleaning staff in one hospital to turn over sheets instead of washing them – to save money. And this at a time when hospital-acquired infections are killing patients. Again you must ask the question: what is going on in the heads of those that make these decisions.

An insight into how this might happen was provided by a series of three programmes on TV where a management expert, Gerry Robinson (who had proved his ability to turn around failing companies) was asked to cut waiting times in an NHS hospital without spending extra money. A major obstacle that he encountered was the reluctance of the chief executive to come out of his office to see what was going on in his hospital. He hated leaving his comfort zone – which was analysing figures – and saw no benefit in meeting the people he was managing.

My argument here is a little complicated but please bear with me. The chief executive saw his job as studying financial and statistical reports and using them to find ways to allocate his resources better. He had been successful in balancing the hospital's budget, for example. He did not see it as part of his job to watch the hospital at work, gauge morale, understand logistical problems, pay attention to detail and judge the effectiveness of the team he was leading. He did not see how his skills and position, and his visible lack of concern, and complete lack of encouragement could affect his staff and help them with their problems. If that was his attitude to his staff, for whose jobs he was responsible, imagine how remote he was from the patients.

Quick and dirty ways to make the figures look better

With that sort of leadership, it is easy for a culture to thrive where managers just look at numbers and seek quick and dirty ways to make the figures look better. And once in existence a culture reinforces itself. (Presumably that is how the CE got his job.) Anyone with sensitivity, anyone with imagination, will not want to work long in an environment where callous decisions are routinely made. They will drift away. (And whistle-blowers are pilloried). Meanwhile, the administrators left behind will recruit staff who see things in the same way that they do: that the whole thing is a game where the sole objective is to get the numbers right.

Going into hospital is frightening. Sickness makes you vulnerable, and however minor your problem, you are surrounded by the suffering, pain and fear of others. Your own mortality is never far from the front of your mind. If this is exacerbated by a callous institutional framework more interested in its own problems and preoccupations, the experience becomes much worse.

Irreconcilable clash of cultures

So it is not surprising that Patricia Hewitt (The Health Secretary) faced such a hostile reaction when she addressed the Royal College of Nurses. Many doctors and most nurses are drawn to the profession by a vocation to care. I have been relatively lucky with my health so I have not had to meet too many nurses, but all those that I have met, have shown genuine care and empathy and have helped me through frightening times. It is lucky that these medical staff act as a buffer between patients and an uncaring administrative structure.

But in an uncaring environment these humanitarian instincts are undervalued. Doctors and nurses feel unappreciated. There is an irreconcilable clash of cultures. No amount of money spent by the government will improve matters if the bureaucracies through which they effect their policies tolerate – and indeed generate such callous behaviour.

Image credits
http://www.suelebeau.com/images/principal.gif

http://upload.wikimedia.org/wikipedia/commons/thumb/6/6c/Physician_in_hospital_sickroom_printed_1682.jpg/300px-Physician_in_hospital_sickroom_printed_1682.jpg