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19 February 2001

A long wait on Alexanderplatz

A personal account of the frustrations of NHS queues

By Paul Barker

I think of it as “my year of the NHS”. Don’t shy away. I’m not writing the story of my time on a ward. I once worked with a journalist who’d been an assistant editor on the old-style Punch. The two unsolicited articles they received most often were “My driving test” and “My hospital visit”. Both went straight back.

Fortunately, I’ve spent very little of my life in hospital beds, or even at a GP’s surgery. But this past year, I’ve spent a large wedge of my time acting as a temporary (at least, I hope it’s temporary) unpaid NHS administrator. On behalf of a very close relative, I’ve been trying to make sure that appointments – for tests or consultations – happened in the right order; that different departments in a leading London teaching hospital actually communicated with one another; that letters of clinical referral from one consultant to another were despatched in something under the four weeks that seemed to be regarded as perfectly normal.

It’s been an absolute eye-opener. The NHS remains, in many ways, a wondrous creation. If anything sudden or drastic happens, the elephantine system suddenly turns into a panther. If you are run over, or have a stroke (see Robert McCrum’s revealing book, My Year Off), your chances of being well treated for that emergency are very high – especially if you live near a teaching hospital. But, even then, you’ll be dismayed by the clear signs of disorganisation, shabbiness and filth. As a regular visitor at hospital this past year, I’ve been conscious of walking past mysterious bags of evil- looking waste, of stains and spills on dirty carpets. The 19th-century reformers invented the modern hospital because they wanted to get the ill away from their germ-ridden homes. Now, the longer you stay in a hospital, the likelier you are to catch another disease.

During this past year, somewhere up there, far above the head of anyone working in, or trying to use, the NHS, the politicians have thrown their abuse at one another, and massaged their dubious statistics. The trade unions, from the British Medical Association through to Unison, have explained that any troubles are all a matter of “morale” (which is now, as it always has been, union-speak for higher wages). Opinion polls have shown that less than half the population is happy with the NHS and that many people do not trust even a Labour government to look after it. This should worry a party for which, ever since Aneurin Bevan invented it, the NHS has always been a voter rallying point.

In a leader last month (22 January), the New Statesman mocked those who felt distaste at the press photographs of bodies stacked in a hospital chapel instead of in a mortuary: “It is a collectivised public service, free at the point of use; and to expect from it high stand-ards of individual attention or customer choice or fastidiousness about dead bodies is absurd, just as it was absurd to expect gourmet meals from a Soviet restaurant.” In the closing years of Thatcher-Major rule, I edited a collection of essays, Living as Equals. Professor Dorothy Wedderburn contributed a paean of praise to the NHS, headed “The superiority of collective action”. For many years, it created a feeling of equality in one segment of life at least. But I don’t think she meant it should be run like a Soviet restaurant.

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I never tried to eat, gourmet-style or any other way, in a Soviet restaurant. But in east Berlin, in the days when you were allowed in for a few hours, I was very struck by the way a DDR restaurant was run at a showcase site in the Alexanderplatz. Someone had decided that it was tremendously “inefficient” to have any empty tables. Answer: have this as the only restaurant on the square; open it for very short hours; and so create a queue, snaking out into the square, from which people could edge in from time to time, and hope to get a table before the restaurant closed again for the afternoon. (I went hungry and spent my money on playing cards with DDR symbols on the backs.)

On that comparison, perhaps the NS leader was right. But if it is, the health service cannot long survive in its present form.

My experience of the past year is that the NHS is permeated with a culture of keeping people waiting: the Alexanderplatz Technique. If what ails you is something that doesn’t leap to the eye – even if it makes you miserable and physically sick – then you are trapped in this culture of waiting, like a fly caught in a spider’s web. I’ve found myself writing letters, sending faxes, even sometimes e-mails, to try to move the machine forward. I remember an entire morning spent trying to find the whereabouts of a specialist nurse who was due to carry out one test. Her name wasn’t on the hospital switchboard’s computer. Eventually someone in her department thought: “I think there’s someone with that name here.” But they knew of no extension number. When I got it, she was extremely helpful. But she couldn’t carry out the test without a letter of referral from the consultant who had requested it. Time was ticking by. After yet more chasing, I got through to the consultant’s secretary, who told me that “three or four weeks to send out a referral letter is quite normal”. Finally, she sent it down the corridor in about ten days.

I could go on. A haematology clinic that makes an appointment, and then when you arrive has never heard of you. After hours of waiting, a nurse refers you to a doctor who then reveals that you need yet another letter of referral before you can be tested. Or the appointments desk suddenly decides you must go on the “new patients” waiting list, after telling you point-blank that you have never seen the consultant that you began to see 18 months before. (You’re not on the computer screen. Therefore, you don’t exist.) Or you manage to get an X-ray appointment – it’s been a struggle – in time for the results to be ready for the next appointment with the consultant. When you arrive at outpatients, in the usual shabby queue, you are told that the X-ray department can’t find the results. You ask if you can make a new appointment at a date when they will be ready, and you’re told the first would be in three months. More phone calls and e-mails. You get an earlier appointment, only to find that the X-rays have been carried out wrongly.

This quest for an answer goes on and on. Along the way, an operation that turns out to have been totally unnecessary is carried out. “But we have to give it our best shot.” It emerges – disgracefully – that the female patient I’m helping to battle against the system gets much better, more courteous attention from the male consultant if I turn up at appointments with her.

When this consultant refers her for a second opinion at another London teaching hospital, the necessary clinical referral letter is again delayed, and sent to a slightly wrong address. It languishes there till a more enterprising nurse tracks it down. After that, some notes are due to be copied and sent across. We are caught in a limbo. The secretary to Consultant A seems unwilling to part with the notes. So Consultant B can’t take things forward. He is a surgeon, but he’s admirably unwilling to operate with the information he so far has. Almost two years since the first visit to Consultant A, he says: “We don’t really have a firm diagnosis.” This may not be surprising when, at a first appointment, Consultant A had told his patient that the pain and vomiting she was suffering from was “quite normal”. It has now reached the stage where she’s on not much more than a starvation diet. One day in January, she was racked with pain and vomiting for several hours after eating only a couple of breadsticks.

Like me, she has been a devotee of the NHS, defending it against its critics and never taking out private health insurance. And, yes, she has many things to be grateful for: treatments that went well, or reasonably well. And, yes, we all know of reports of poor practice in the private sector; especially in London, the nursing seems to be poorer than in the NHS. This was Robert McCrum’s experience when he moved, after a severe stroke, from the NHS to the private sector (drawing on his insurance policy from his then employers, Faber & Faber). But, for the second opinion, Consultant A suggested that the first appointment was taken privately (within an NHS hospital) “to speed things along”. So the patient paid her £120 to Consultant B, and the £30 the NHS charged on top for the use of his consulting rooms within the hospital.

If, between us, we ever manage to get what’s necessary to take diagnosis further, this patient will face a decision about whether to stay in the interminable-seeming NHS queuing culture, or whether to pay to get out: perhaps very large sums indeed. This goes against the grain, both on grounds of principle and on grounds of “having paid taxes all these years”. But at what point do you choose between letting yourself or your savings suffer?

In all this saga, I’ve become more and more conscious of what it must be like if you do not have the bloody-mindedness to ring, write and fax. If your phone bill is a worry to you – if you even have to use a public call-box – how will you battle through the fortress-like delays of a hospital switchboard, and the defensiveness of secretaries for whom consultants are gods? It isn’t a question of that all-purpose excuse, “lack of resources”. It’s a question of an Alexanderplatz culture as engrained as the dirt on the unwashed hands of many of today’s ward-round doctors.

The NHS is permeated with the feeling that patients should be eternally grateful. But life has moved on since the 1940s. People expect a “front office” that’s efficient and pleasant. They don’t expect to have to battle with some bad- tempered, inattentive receptionist.

On a recent visit to an outpatients’ clinic for a minor ailment of my own, I saw a notice which said that, in the past month, more than 90 patients had missed appointments. The implication was that patients ought to be ashamed of themselves. But if I ran an appointments system with that degree of mishits, I’d think I’d got something wrong myself. Letters are sent out into the blue, stating appointment times, with little or no consultation about whether they fit. When you arrive, you discover that batches of patients have all been given the same time, in order to make sure the consultant is never kept waiting. The Alexanderplatz Technique again.

Before the NHS nationalised the hospital service, many towns had two hospitals: one, usually called the Infirmary, was funded by voluntary contributions. This was the politer hospital. The other, usually called the General, was built by the Poor Law Board of Guardians. Even now, you can easily tell which is which: it’s noticeably bleaker in a former Poor Law hospital. If you’re still uncertain, you’ll find plaques on the wall, commemorating the honoured founders, even after innumerable NHS reorganisations.

This air of charity has not been driven out by the ethos of collective action: far from it. In a Yorkshire town, not long ago, in a local non-teaching hospital (ex-Poor Law), I visited a woman in her nineties, who was very stoical, very proud of hardly ever visiting the doctor. It wouldn’t be long before she went to her son’s home to die. She was never bathed the whole time she was in hospital. When her son came to take her out, and remarked on it, he was told, rather crossly: “Oh, we can do it now, if you like.”

As so often in organisations, so with the NHS: I’m increasingly convinced that decisions taken right at the start, which seemed so good at the time, contained the seeds of many of the later difficulties. The two central decisions Bevan took were to fund the NHS out of general taxation and to make it a national service. He rejected an insurance model, and he rejected the arguments of his cabinet colleague Herbert Morrison in favour of local control.

Funds from general taxation – supplemented latterly by fees from employed adults for prescriptions and a few other services – meant direct control by the Treasury. Even five years ago, Professor Wedderburn was able to praise the NHS, because of this, for being an extremely frugal service to run. You don’t get many people saying that today. And a national health service produced a set-up that, once, was second only to the Red Army in the numbers of people it employed. Now there’s no Red Army. The whole thing is unmanageable, as all those reorganisations have proved.

My year of the unwieldy NHS and its beloved Alexanderplatz Technique has convinced me that the only way to make the health service work as Bevan hoped it would is to break it up and put it under genuinely local control. And the only way to change the odour-of-charity relationship between patients and professionals is to bring in upfront payments – which would be reimbursed later through insurance cover. This would work both ways. You can be sure that patients would turn up for appointments if they had to pay a fee.

I know all the arguments the other way. An insurance-based system, as in France or Germany, leaves the question of those without proper coverage – not the poorest of the poor, usually, but the working poor. But this isn’t insuperable. A local system means that services may be unequal. But, for the first time in 50 years of the NHS, comparative statistics are being published, and we are learning how unequal the existing service is.

In any event, as the welfare economist Amartya Sen pointed out in Living As Equals: “A dilemma is not a conflict between a good thing on the one side and a bad thing on the other . . . Rather it is a battle between different good things.” This is a truth that is forgotten at our peril in public services. What used to be called council housing (and is now either social housing or affordable housing) has been all but destroyed, not by the Thatcher government’s right-to-buy policies, but by the apparently benevolent decision to allocate according to “need”. Instead of being something to aspire to, these estates have now often become ghettos of the socially marginal. One good cause destroyed another.

So it is with the NHS. To cling to the original pattern, even though the world has changed, may yet destroy it. Local control and an insurance principle: this is what radicalism would now mean. Will a Labour government have the courage? It took a Tory government to destroy the cosy old ways of the City of London in the Big Bang, and several other cosy professional ways as well. To each his own. The NHS remains essentially a Labour terrain. This is the only place reform can come from, and the only way the NHS can be preserved from becoming yet another of those great British institutions that are so much “the envy of the world” that no one else, anywhere, has seen any reason to copy them. It may be that the moment is arriving to acknowledge that we’ve got it wrong. My year of the NHS makes me think so.

Paul Barker is a senior research fellow at the Institute of Community Studies

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