The struggle with health

I am a disabled man. We are all, of course, disabled, even the brightest and best of us have a disability of some kind - a disability to control anger, perhaps, or love our enemies. We all suffer to some degree but I suffer from persistent physical disability in a land which has a national health service which is meant to preserve us from illness - and yet this health service has not provided me with health. In fact it has more often produced the opposite - worse and more disabling ill health. Thi (?) to bring it healing and regeneration in fact becomes another illness of the city, draining it of life and oppressing it. Maybe the NHS does this to the city, turning what is life (let us say for instance the birth of a new human being) into what is pathological, transforming what is at the vanguard of human experience (for example, mania) into an illness in need of chemical suppression.

This essay explores my experience of disability (and my experience of being disabled in the eyes of others) within the context of the NHS and its promise of universal welfare. It seeks to explore the complex relationships between personal experience and the mass management of the city. It is a personal odyssey through something that is of deep personal concern to me and yet with the aim of opening up the dynamics of our shared urban experience.

We begin with the great wonder of post-war reconstruction - the National Health Service

The NHS - origins and ideology

It is not without justification to say that the NHS began in the poverty of Whitechapel, for it was here that that the young William Beveridge experienced, through the medium of Toynbee hall, the entrenched, multi-headed poverty which has been Whitechapel's hallmark for centuries. Many others also experienced similar poverty in similar places and determined that the great centre of empire should learn how to overcome this multi-headed giant of poverty rampaging in its own castle. Through the first half of the 20th century various policies were put in place to combat poverty and disease but it needed the crisis of the Second World War to make people believe that the giant could be slain, and to stir up the political will to attempt it. Beveridge was given the task in the midst of the darkest years of the war to imagine a post-war reconstruction of welfare in Britain. The war demonstrated what could be achieved when a modern nation put its mind to it, for instance through the Emergency Medical Service which brought together the complex patchwork of voluntary and municipal health provision to meet the pressing needs of Britain under the Blitz. Beveridge sought to work out practically how the 5 giants of Want, Squalor, Disease, Idleness and Ignorance could be conquered. A different approach was envisaged for each giant. Unemployment was to be slain by full employment, insurance to provide a basic living wage for the unemployed and a safety net to keep any others out of abject poverty. There was a strong emphasis therefore on responsibility and people making provision for themselves in regards to employment and earning a living. Health, however, was treated differently. Medical care - both from General Practitioners and Hospital specialists was to be provided free and universally. Health was perceived to be a basic human right and it was believed that it was possible to deliver it through universal, high quality medical care. Beveridge's report was greeted rapturously. The report became a best seller and Beveridge a national hero. Even the Nazis were impressed by the comprehensive vision of the report, considering that it out did them in National Socialism!

The report might have got buried, or at least castrated, by a Conservative government (although it did command wide cross party support) but the Labour landslide meant that it was enthusiastically picked up. The health agenda was carried forward by the prodigiously gifted Aneurin Bevan, who won over civil servants and establishment doctors to establish the NHS with the backing from doctors that it needed. Many doctors were suspicious of the proposals, wishing to maintain their independence and not become civil servants. Left wing MPs were equally suspicious of not paying doctors a salary and of allowing NHS consultants to retain private work. But a compromise was reached and an essentially socialist health service was created which still retained more than vestiges of privilege. The political battles around the setting up of the NHS therefore created complexities in the system which continue today. It was always unpredictable how the service would work out once it hit the streets and certainly there was a massive demand in the first few months as people came forward to find solutions to the deafness, short-sightedness and hernias which they had lived with for years. What is undeniable is the incredible impact that having free and comprehensive medical care had on a nation who had previously lived under the shadow of healthcare limited by individual finances. But as Bevan himself declared "We shall never have all we need, expectation will always exceed capacity" (although many mistakenly believed that the NHS would reduce the need for health services by making everyone healthier). Healthcare was now limited not by individual finances but by national finances and perhaps by something more profound - the reality that health is not the product of doctors, money or the NHS but is a far more complex and fickle concept which is as hard to define as it is to create.

Through the 1950s and the 1960s the welfare state and the NHS had the broad political support of all parties and health, especially, was a simple policy area which didn't even require a cabinet minister. There were battles over prescription charges, raising the status of general practice and the beginnings of the demolition of the large mental hospitals but the atmosphere was generally positive and, especially in the sixties, expansionary. In the 70s, however, questions about the NHS began to be asked from the left and the right. The monetarist and free market policies which bore full fruit in the reign of Thatcherism wished to roll back the state and bring private enterprise into healthcare provision. This agenda became dominant after the economic recession of 1973 and the oil crisis which necessitated a reduction in government spending. But the left was also questioning the welfare state. Poverty was 'rediscovered' in the sixties, which raised serious questions about the whole welfare enterprise and created a lobby for ever increasing spending from the far left and welfare professionals. Less mainstream agendas also came to the fore, as in the case for childbirth. The simple dynamic of the NHS was to increase the hospitalisation of childbirth with increasing reliance on technology. Women's groups, in particular, however, began to question this trend and whether it was really in the best interests of mothers. A small independent midwifery movement developed which sought to give women the choice of homebirth and balance technological advances with the age old skills of 'wise-women' midwives (IMA 2001).

But it was the agenda of the right that became dominant. Initially Thatcher bypassed health and the welfare state concentrating her attention on castrating the unions and on economic policy. As economic policy began to bite deeper and deeper into government spending confrontation with the cash hungry NHS was inevitable. Thatcher was temperamentally suspicious of the NHS and would have preferred an insurance based scheme where people who could payed for their own healthcare. But she was aware that the nation was religiously attached to the NHS and didn't want to appear to be threatening its fundamental character. She was therefore searching for some way to change the NHS in line with free-market thinking but without appearing to undermine it. It was a confused agenda which has left people with the gut feeling that the Tories can't be trusted with the NHS. Nonetheless she finally hit on the idea which seemed to promise the possibility of change - the internal market. Rather than the NHS remaining a command driven economy there was to be a split between purchasers and providers. GPs, for example, were to become fund holders, buying services from the hospitals and other healthcare providers. The doctors in the person of their trade union the BMA vigorously opposed the plan but Thatcher found a general in the person of Ken Clarke who could defeat this union just as she had defeated the coal miners (her first choice the true blue Thatcherite John Moore was undermined, ironically, by his own ill-health). All the inherent conflicts within the NHS and British politics had truly come to explosive life - healthcare had become a battlefield.

Developing in parallel to these political and managerial changes there was also a profound revolution in the understanding of healthcare. The extent of this revolution was demonstrated by the publication by the BMA in 1993 of Complementary Medicine: New Approaches to Good Practice which sought to give a context in which alternative therapies could be understood and included within the mainstream healthcare system. This was in stark contrast to a 1986 report Alternative Therapy which disparaged alternative therapies as having little in common with the scientific principles of orthodox medicine. (Fitzpatrick 2001 p144). It would seem that in 7 years the confident march of conventional medicine had been halted and its underlying sense of manifest destiny corroded. Some like Fitzpatrick react in horror to this overturning of their professional scientific training but others like Hilary Jones (Jones 1998) seem to have reflected more dispassionately and come to an understanding of why alternative therapies have attracted a following. He gives an interesting table of contrasting consultation styles in conventional and complementary (how alternative therapies are often now designated) medicine (Jones 1998 p33). Thus whilst conventional consultations average 6 minutes, alternative therapists have initial consultations of 60 minutes with 30 minutes for follow ups. Conventional doctors are poor listeners, often interrupting and disagreeing with a patient's interpretation of symptoms whilst alternative therapists listen carefully. Jones also sees the direct payment for services as having a positive impact on the therapeutic relationship. Jones seems concerned to create an understanding between the two worlds of conventional and alternative medicine and whilst being clearly sceptical about certain therapies such as radionics, seeks to make room for all forms of medicine. Others are much less conciliatory. The American web site Quack Watch is an ongoing diatribe against all forms of alternative medicine and whilst alternative therapists still seem cautious of openly attacking conventional medicine in print many will verbally express fear and revulsion of doctors and the industrial-medical complex.

Fitzpatrick (Fitzpatrick 2001 chapter 8) traces the philosophical roots of this change which found expression in the 1993 paper. He sees the 1970s as being the time when medicine lost confidence as it came under attack from people like Ivan Illich in his book Medical Nemesis (see below) This was followed up in the 1980s when the attacks became more mainstream as in Ian Kennedy's Reith lectures Unmasking Medicine in 1981. But these changes can be traced back further to doubts about the efficacy of modern medicine typified by the Thalidomide disaster which produced limb deformities in babies if taken during pregnancy. And of course a recent spate of disasters for the medical establishment - Harold Shipman and the Bristol Royal Infirmary - has only made politicians, the media and the public more open to the radical criticisms of modern conventional medicine. A consequence of this growing criticism has been an increase in emphasis on preventive approaches and health promotion, but as Fitzpatrick points out throughout his book this just encourages health to be a instrument of government regulation and intervention into all aspects of our lives. We are now told what to eat, how to exercise our bodies and how to indulge in copulation.

This brief narrative does scant justice to the whole story but what it does demonstrate is the increasingly complex nature of healthcare in Britain. There is no longer a simple crusade to end disease, where complexity is only to be found in the political manoeuvrings needed to create the appropriate institutions. But there is, rather, a complex debate about the nature of the health providing institutions and even more complex discourses about what health is and how we create it. The NHS might still be a sacred cow which no politician can openly challenge but there are plenty of people asking whether goat's milk might not be better for us and wondering whether the beast has got BSE or some yet undiscovered disease!

Health in London - structure and personal stories

Having set the general context of complexity within the NHS we need to focus more precisely on the urban experience of health and healthcare. I will focus particularly on the London experience.

Kings Fund

The health of Londoners is generally slightly better than that for England as a whole but there are two exceptions.

These high inner city death rates are offset by the low death rates in the rest of London. London has a particularly polarized experience of health.

Unemployment, social and cultural isolation, and the poor living conditions created by poverty all foster vulnerability to mental distress. In inner London these conditions interlock with the capital's high levels of substance abuse, homelessness, and HIV and AIDS to create unusually high levels of mental ill health. In addition the capital's younger than average population means a greater incidence of psychoses and eating and personality disorders at the stage in which they require the most active intervention by health and social services. Substance mis-users are highly concentrated in London: about a third of the people starting contact with drug misuse services in the U.K. live in the capital. There is also evidence that seriously mentally ill people are attracted to live in inner cities. ... Epidemiological studies suggest that the incidence of serious mental illness in inner London is twice that of suburban and rural areas.

London is not therefore an unhealthy place - in comparison, say to Scotland's great urban metropolis Glasgow with its high rate of coronary heart disease (London's is rather low). Its deprivation does, however, cause particular health problems especially for young men and those struggling with their mental health. It may not make you ill but it might drive you mad.

Hospitals are an important part of the London landscape. St. Thomas', home of Florence Nightingale and modern nursing, looms opposite the Houses of Parliament on the other side of the Thames - reminding the politicians of their most intractable problem. Guy's and its museum of surgery still echoes to the memory of Keats' melancholy and the most ancient of all St. Bartholomew's continues to resist its rationalisation. These great teaching hospitals have been recognised as unbalancing healthcare in London for a hundred years and a number of them (e.g. St. George's and St. Mark's) have been moved out into suburban London. But they continue to exert a powerful influence, attracting the sons and daughters of the establishment to train there as doctors and nurses, and providing a focus for professional and public resistance to the managerial restructuring of London. These hospitals continue to attract many people from outside the capital because of the perceived excellence of the clinical care that they can provide (and from my wife's recent experience in St. Bartholomew's there would seem to be some justification for this perception). This emphasis on acute and elective services has, however, seemed to lead to an under-emphasis on more mundane primary care services.

London is perceived to have particularly poor GP services. 25% of GP premises are considered to be unfit compared to a national average of 2% and this figure rises to a staggering 45% in deprived East London. Those aspects of healthcare which require ongoing input such as mental health and care for the frail elderly are considered to be particularly weak (Kings Fund 1997). This is in stark contrast to local authority expenditure on health related social services which is significantly higher in London even accounting for the greater expense of running services in London. It is unclear why this has happened but the clear implication is that attention in London has been concentrated by an elite cabal of leading consultants on prestigious centres of international excellence at the expense of the healthcare of the poor of London. Interestingly no one seems to argue from the fact that London's health is generally at least as good as that of the country as a whole that GPs are not such an important factor in the promotion of health! That would not fit the logic of a healthcare culture which can come up with bizarre statements such as "the fact that the use of hospitals by residents of inner-deprived London has not increased at the same rate as that for comparable groups in other English cities gives grounds for concern" (Kings Fund 1997 p70).

Following on from the Tomlinson report 1992 attempts have been made to address this imbalance of prestigious teaching hospitals alongside poor primary healthcare. This has been attempted by the simple expedience of giving less money to hospitals and encouraging them to amalgamate and giving a cash boost to primary care. The Kings Fund are doubtful about whether this will improve healthcare for Londoners because out of towners are continuing to use London hospitals and the cash boost to primary care is time limited. It is also worried by the complexity of the healthcare scene in London

The turbulence attendant on successive NHS and local authority reorganisations, along with the preoccupation with price setting and the annual contracting round characteristic of the internal market, has diverted energy and resources away from the substantial service design and development tasks central to achieving positive change
Kings Fund 1997 p71

They are also concerned by the lack of an overview and the amount of time spent managing individuals who continue to receive their healthcare from different trusts and authorities. Now in the new millennium Labour has continued to introduce more changes, including moving away from the internal market so I for one have no idea what's happening now! We also need to ask what supposed improvements actually mean on the ground, a nearby GP surgery in Hackney, for instance, has recently had a new surgery built. The surgery has wonderful spacious rooms for the GPs but the waiting room is still cramped and without adequate windows. It is at this level that I would ask questions about the Kings Fund material that I have been dependent upon. It's material is exclusively quantitative and seems to rely on a very narrow range of references almost entirely drawn from Kings Fund research or from official sources. It is badly in need of some good qualitative material which can more adequately tell the story of healthcare in London and examine the crucial but complex relationship between healthcare and health. It is to this issue that I will now pay attention.

David Widgery

The lack of qualitative material from the Kings Fund can be rectified to some extent by examining David Widgery's Some Lives. This book is a GP's reflection on the East End which contains both material from his casebook and his political reflections on the NHS and East London. Widgery is a very political and polemical writer as befits his membership of the Socialist Workers Party. But Widgery is not an archetypal Leninist, having more than a touch of the bohemian anarchist about him (he was an influential writer for the sixties hippie newspaper Oz). In fact his commitment to the SWP seemed to be rooted in its continuing belief that revolutionary change could be achieved by the working class, rather than the revisionist sects of Marxism who eschewed such 'simplistic' politics. There is in Widgery a strangely touching naivety which asserts the dignity and strength of working class culture even while charting its degradation. For me, at least, there is a sense of desperation in Widgery's assertions, but they are made more real and authentic by his very concrete engagement in the uncomfortable realities of East End life. During the 80s he became more and more engaged in his medical work and it is this, perhaps, which has most lasting value and certainly most relevance to our present concern of understanding the complexity of health in London.

This passage gives a snapshot of what actually happens in the chaotic reality of urban healthcare. Widgery is able to abstract from stories a picture which challenges the 'efficiency' models which measure performance in terms of through put of patients and staffing economies. Theories are understood, plans are in place but reality is greater than both of these. One of these stories poignantly illustrates the limited perspective of individual's experience of the NHS.

Widgery, of course, comes from an overtly political standpoint and is always keen to press home the polemical scalpel but a humanity under-girds his politics. His attitude to religion is illustrative. In the preceding quote he doesn't seek to secularise the woman's experience and elsewhere he appreciates a Bach concert in a docklands church for its spirituality as well as its musicality. From a member of the SWP this is impressive and persuasive of the authenticity of his storytelling. An even more revealing story is of his encounter with a nonconformist minister

Despite the ideological gulf between the two Widgery seems to identify a commonality - they both experience the reality of the East End face to face and know the exhaustion of it. Widgery draws more direct connections between ill health and the city in his discussion of the violent racism directed against the Bangladeshi community

Widgery gives a clear witness to the complex causes of urban ill health which may not be quantifiable but are clear enough to anyone who wants to listen to the stories.

Widgery's sensitivity to urban reality may well stem from his own ill health rooted in childhood polio but he is generally unreflective about his own experience and position within the urban ecology. Maybe it did get too much for him, official reports of his death talk of an extraordinary accident but others make mention of suicide. Certainly self-reflexivity is not a noticeable attribute of urban activists. I will seek to rectify this in a following section but first I want to briefly examine another important aspect of healthcare in London - one which was ignored by the Kings Fund and Widgery, that of alternative health.

Alternative healthcare in London

Alternative healthcare is something that has been created by the NHS and its institutionalisation of the rationalistic medical model. Previously the various models of healthcare - medical, homeopathic, spiritual, Chinese, ayurvedic etc. competed equally for patients but the NHS elevated the dominant paradigm into a privileged position. The state now paid for people to access medical healthcare whilst other models had to persuade people to pay for them themselves. As we saw above there is now a move to fund other models of healthcare but generally speaking the alternative models have to woo their clients by paying them more attention and offering something different.

London has always been a place where these different models of healthcare have been prevalent (Ackroyd p207-11). The independent midwifery movement described above has always been centred in London.11 of the 30 presently practising independent midwives are based in London (and the true number is more because one of these midwives has a large practice in which she employs a number of other quasi-independent midwives). London is also the one place where there are enough independent midwives for them to be able to gather and organise themselves. A similar London orientation can be seen in practitioners of the Alexander technique - a method of body management developed by an Australian - FM Alexander. 39% of the practitioners listed in their directory are London based - being especially concentrated in north and north west London. Alexander first introduced his technique to Europe through London where members of the elite such as Archbishop William Temple, Sir Stafford Cripps and Bernard Shaw became his clients and it has become popular amongst actors. The directory indicates that it has spread throughout the country, although there are notable concentrations in places like Brighton (a favourite location for alternative types wanting to get out of London), Devon and Oxford.

I don't know exactly why London is such a centre of alternative therapies but it should surely be taken into account when looking at healthcare in the capital. Money obviously has something to do with it. No gentrified London high street is complete without an alternative therapies clinic. But alternative healthcare isn't simply private medicine - there are plenty of places to go if you just want medical care with a hotel room. It is an expression of scepticism about establishment institutions and a search for alternative models which is evident throughout urban London.

A personal odyssey through the NHS

I came to London with bad feet and painful hips. No one seemed to understand why. I had been investigated but no one was able to give me any idea why I suffered from this persistent chronic pain. I was prodded, made to undress in front of uncomfortably attractive nurses, scanned, x-rayed, left waiting in noisy, barren hospital corridors, all for no apparent benefit. I had even been yanked about by an osteopath the only result of which is that I have ever since only slept with one pillow (this seemed to be terribly important for some unknown reason). Looking back on this pre-London experience the thing which strikes me most is that I had learnt nothing from it, I remained alienated from my body and unaware of why it felt like it did. My mind was trained in the sophisticated analysis of historical, literary and theological texts, my heart was schooled in the ways of love and friendship and even my spirit was discipled in the way of Christ but my body was numb and passive - illiterate in its own carnal language. My journey through London has, perhaps, been a journey to learn this language and to relate it to the other languages of mind, heart and spirit. Certainly it is a hard journey for I have been reluctant to undertake it and there are few guides - especially amongst the medical profession who are more often interested in loading you aboard the jet plane of cure than providing you with some of the maps for the journey which you alone can take. For, as you would have thought we'd learnt by now, it is the journey rather than the arriving that is important.

Arriving in London with bad feet meant that I couldn't walk around as much as I would have liked. My explorations were constrained and restricted but I roved freely by bus and train - at least it feels free from my present far more restrictive perspective. But I always felt constrained and was aware of limitations and occasionally had to struggle with finding suitable footwear. My body was always there as a problem and I never lived unconsciously within it - especially because I was dully aware of a variety of tensions, aches and rigidities. which I, as the mystics have it, had experience of but no knowledge.

Learning from my skin

I had just moved into a tower block in Battersea after finishing a rather traumatic relationship. The flat was hot and stuffy which probably contributed to the skin problems which I developed. Not that I really acknowledged that at the time, I had some awareness that the heat was a problem but I did not want to acknowledge it. After all I didn't have anywhere else to live, I liked living there, it was cheap and it was something that an urban mission person ought to be doing. And anyway who knows if it was the flat that was the problem - maybe it was the relationship break-up, maybe it was just destiny.

Not that the GP asked me any of these questions. It was a surgery just round the corner, the waiting room was cramped and crowded and there was no appointment system so you either got their early and waited an hour outside or got their late and waited an hour inside. I have noticed that there is a trend within inner city GPs to introduce appointment systems, but it often seems like a losing battle because people just turn up anyway - which is OK if you've got nothing else to do, but for busy, important people like me it's a pain. Well it was more than a pain. It turns meeting the GP into an experience which culminates in a misleading sense of relief - at last you've got out of that waiting room, now you've made it. This is disaster. Because the really important part of negotiating the NHS has only just begun - you are now encountering the gatekeeper. Here is the person who has access to all that the health service has to offer, and therefore, so you think, has access to health itself. This, of course, is tragically mistaken and maybe you know that, the doctor certainly does, but it is a pervasive myth and it was what I believed at the time. Not very coherently, not as a doctrine but what else were doctors there for?

They were there because I had this skin problem which was causing me considerable grief. Actually I had two skin problems. I got two creams. This was the reward for all my patient courage. You need a reward, you've psyched yourself up to go to the doctors, you've made it through the waiting room, you've actually got into the consulting room! You've done your bit - now it's up to the doctor. They will provide you with health. And here is the problem: your passive expectation dulls your awareness when it needs to be at its most alert. I didn't really listen and later I got confused. Which cream was for which bit? Was it important? And the initial problems didn't seem to be getting any better. It threw me. Everything escalated and got completely confused - which cream would work? What was the actual problem? Was I reacting to the creams or was this just all part of the process of healing? I stopped using them and things got better but then worse so I started using them again. And it wasn't just a little irritation - the pain was driving me crazy. I was wondering if I could carry on working, I didn't want to go out as it just made the pain more difficult to deal with. It was a nightmare year.

But where was the GP in this? The surgery seemed to reflect the chaos I was feeling. It had a hectic atmosphere on the verge of panic, which was about as far from health as I could imagine. What I needed was a calm environment in which to resolve my anxieties and confusions but all I got was a referral letter to a consultant which was never sent. This made me angry and I left the practice, joining another one on the other side of the estate. By this time my problem had resolved itself when I finally decided to give up medication of any sort and follow the more practical advice I had picked up along the way. The problems still reoccur and I wonder if all the medication hasn't created a chronic weakness. Was the GP to blame for this? If he had listened attentively and got a handle on the problem at the start maybe it could have been resolved. Maybe the problem was with me - I was too passive, not engaged enough in the creation of my own health. Maybe it was a problem of environment - poor housing, over stretched GP practice, chaotic inner city community. It isn't possible to say with any accuracy. I'm aware that the true story is far more complex than I have portrayed - I had a number of other health problems that I was struggling with, not to mention the positive spiritual growth that was maturing in those difficult days. And who knows what personal and practice issues were engaging the GPs at the time? We should also not forget all the Tory reforms, discussed above, that were being introduced at the time. A comprehensive analysis of my experience would need to include all these factors.

I did, however, make a friend out of my problems. We both shared various chronic ailments and so we met to pray together, having both learned that health cannot be insisted upon and that cure is a secondary matter which comes into play after you have learnt to bear the burden with dignity and strength.

I was referred to a skin specialist. My family found out about him through their medical connections and I persuaded my GP to refer me. I could have taken the private route (this has always been something my family has felt happy about spending their money on) but it was possible to see him on the NHS so it didn't seem to matter. We have often used the technique of gaining access to the appropriate consultant through paying the £100 private fee but then having treatment delivered through the NHS.

I went to see the consultant at his NHS clinic in one of the central London hospitals. The hospital had recently been rebuilt and it is an impressive structure - vast vaulting atriums where large modern sculptures are suspended and glowing white corridors hung with tasteful prints. Nonetheless the waiting is the same and that sense of lost-ness in the impossibly convoluted medical complex. The dynamics are therefore much the same as meeting the GP, there is tremendous relief when your name is eventually called. But the awe is greater, a vast hospital is a more impressive temple than a cramped inner city surgery and the GP has a far less impressive group of acolytes. The consultant, also, might actually know something about your problem. The acolytes are a complication, they increase the numinous quality of the doctor, isolating you in a cubicle to prepare for his ministrations or taking your notes before you encounter him. The cubicle is the most problematic experience because it is there you are told to strip. Being naked in this great machine is scary enough but I have never yet worked out how many of your clothes you are meant to take off. Are you allowed to keep your underclothes on? This always troubles me, sitting in the cubicle being handed a skimpy cotton night shirt and being told to take your clothes off. Then you're alone wondering what they meant. I think I've worked it out now - you can keep your underclothes on, in fact you can do anything you like and if the big chief has to wait then so be it. On my second visit I was very daring. I'm allergic to cotton (yes I know that sounds strange and nurses when I tell them always look as if they're on the verge of saying - O yes and I'm Florence Nightingale) so I decided to take my own polyester dressing gown. But I got away with it - no one gave me a detention or anything! It's amazing what you can do when you just decide you're going to do it. So I wasn't too bad this time. I had to hang around waiting for the doctor but I was sitting in my own dressing gown which actually covered most of my body rather than giving me a crash course in wearing a mini skirt.

The consultant was OK. He looked at my thighs and he saw it - the little red spots which every doctor up till then had never seen (or if they had, never mentioned them to me). He even wanted to get them photographed so sent me off to the medical photographer. Wow! I was important - I was contributing to medical science. He said some useful, practical things but then came the bombshell.

"I think we might try an antidepressant. Just in a tiny dose. It can just depress your sensitivity. It's not for psychological reasons, it just helps the nerves be less sensitive"

It struck me about 5 minutes later. Antidepressants? You must be joking - I wouldn't even touch those with a 10 foot syringe. I got the prescription but never took them. They're probably still hanging around in the medicine cabinet.

I never went back. I had an appointment but just didn't turn up. I know this is very reprehensible behaviour but I couldn't face sitting there and saying that I didn't want to take the drugs. Something in me also rebelled at the nakedness, the undressing, the waiting. It seemed oppressive and unnecessary, as if it put me in a position where I had to do what I was told. The consultant wasn't like that, not the old dictator of the ward round, but the system was still the same and modern sculptures hanging in airy atriums couldn't change that. I was beginning to distrust the system - my polyester dressing gown was a symbol of me asserting my own needs and my own knowledge about my body, but I was still too weak to confront it directly. I couldn't bring myself to actually go back and say "No I don't want that treatment". I took the course of the oppressed over the centuries, sliding away and making myself scarce.

Maybe I am my own worst enemy. Maybe the drugs would have solved my skin's sensitivity. Maybe going back and talking it through would have led into a creative solution. But I didn't do that. I withdrew. I have started to withdraw more and more from the medical system - trying to find my own way through the maze of my own pain. This is, perhaps, a form of resistance to the medical establishment - a resistance to the humiliation of being stripped and being a passive receiver of health from an iatrogenic system . And if it is a resistance to the medical establishment it is also a resistance to our increasingly mechanised society. Within these systems we are at times able to communicate with other suffers with whom we can share insights into true health. A cab driver told me the story of his slipped disk for which he underwent every treatment available before talking to another patient who advised a gradual stretching of his back by touching his toes. Within a few weeks he was back at work.

It seems to me simplistic to posit a straightforward confrontation between the medical establishment and sufferers. But there is something wrong with a system which is so bad at establishing good communication between patient and healer. What is wrong with the system will be examined in the concluding section but first I want to examine the alternative health scene which is often seen as having most to contribute in this area of communication.

Alternative health - medicine by another name

I want to examine two experiences of the alternative health scene. Some of my experiences have been positive - I have, for instance, found the Alexander Technique useful. Generally I have found those therapies useful which are empowering i.e. which are dependent upon what I do rather than what treatment is given to me. Often alternative therapies seem to have completely taken on board the medical ethos, thus homeopathic remedies are given in the same way as allopathic medicines without any analysis of the patient's temperament and nature.

A friend suggested that I visit a certain alternative practitioner, saying that she was particularly intuitive and insightful. Eventually I decided to try her and went along with her ministrations. Nothing really changed, but because I was brought up to be polite I tried to make the most of it, and anyway she kept saying how much better I looked and what progress I was making. After awhile I began to try and start engaging with her, asking her to explain to me what she was trying to do and what was the basis of her work. She was evasive, it felt as if she was saying to me - don't use your mind just go with the flow. I continued to confront her and said I thought she was trying to convert me, which she never denied without ever admitting to it. Soon after I left. I had found her evasive and manipulative - all the stuff about me looking better seemed just about stringing me along and reminded me of a story by Garrison Keiller where a New Age business associate rips off the story's protagonist and keeps telling him to be cool and not get angry. My friend said that my asking her about the basis for her work probably threatened her because she felt insecure about this herself. So it was wasted money and a certain legacy of bitterness but no physical harm done. The same cannot be said for my next encounter.

I damaged my back because of various adjustments I was forced to make to my sitting position due to my skin problems. I knew that this was a serious problem for me as it severely restricted my mobility. I had by now become much more reflective about my ailments and it felt as if I had been waiting for this development for years - it forced me into a situation where I could no longer struggle to live an ordinary life but must take on the more obviously restricted life of an invalid. I had been aware that my sitting posture was unsustainable but now I was confronted with the reality. In some ways it was a relief to become the invalid I ... but now I struggle for the right word. Did I know I would become an invalid, or did I fear it, or expect, or welcome it? Something of all these. The point is it wasn't a surprise. I made a brief visit to the GP, but mainly because I was having problems with painful heels and otherwise avoided seeking any help, preferring to find my own way to relax into the pain, gently observe its development and allow my body to heal itself. I was put under various pressures to see someone, which disturbed my equilibrium with my pain but I resisted for some time and my back gradually improved. The pressure, however, had its effect and I eventually decided to visit an osteopath who had been recommended to me with a vague notion in my mind that I wanted someone to look at what was going on with my back. But I had not properly formulated what I wanted to achieve from the consultation.

The osteopathy was brisk and business like. The room large, uncomfortable and astonishingly cold. It was an environment I immediately felt ill at ease in. The consultation proceeded with its own inevitable momentum in which I felt I had little part to play, I wanted to explain the complex and interwoven nature of my problems but the osteopath seemed to want to proceed to treatment as soon as possible. In fact she even apologised for not being able to do much treatment this time. So I got swept up into the manipulation, crunching and clicking of osteopathy dimly aware of not wanting it, but caught in my familiar bind of passivity before medics. As she pressed down on my back it felt as if she was fighting it - trying to make it do what it ought to do rather than understand what it was trying to say. I was reminded of the bear-like orthopaedic registrar I knew as an operating department orderly who seemed to attack his patients with all the subtlety of a grizzly. The comparison is not exactly fair but the lack of empathy is the same, when I said that I couldn't sit properly because of my skin condition it seemed to be treated as an excuse rather than the painful dilemma which it was. In our second consultation things were made worse by the receptionist who had stayed out on an extended lunch break so that my osteopath had to periodically answer the door. Unsurprisingly she was visibly irritated and I knew that any chance of an emphatic relationship between us was gone.

I never went back. I couldn't even bring myself to cancel the appointment. I just wrote a letter with the cheque for the consultation. Subsequent to my treatment my feet started to become incredibly tender, even disturbing my sleep - something that I had never experienced previously. On receiving my letter the osteopath immediately rang me and spoke to my wife and said she wanted to call back and talk to me. She never did. I feel deeply angry about the situation. Not so much with her, or with myself but just with the reality that my feet have been seriously injured (maybe with long-term consequences). It is the anger of powerlessness - the deep ache of a world out of joint that it is not possible to do anything about.

From passivity to anger

Reflecting on these chronologically arranged encounters it is clear that I have progressed from an unaware passivity to an awareness of my passivity which makes me angry. I am rarely able to identify any malpractice in my encounters with healthcare professionals but I am increasingly frustrated and disillusioned, being more and more likely to walk away from any form of medicine or therapy. My experience of conventional and alternative therapy is similar - they are equally obfuscating and disabling. I can think of positive examples - the Christian GP who tenderly compared my struggles with Job and the pain management course which faced up to pain realistically and gave me some tools to manage it (even if it disappointingly failed to address issues of spirituality). But most of all I am confronted with myself. I experience my own limitations - physically but also emotionally and spiritually. I have to acknowledge my own (often) destructive anger and the struggles that my spiritual practice has had in navigating the maze of my pain, anger and frustration.

What it does demonstrate is that health is not something to be delivered by capitalist freedoms, socialist planning or medical technologies but it is something that you must struggle with within yourself and within your environment. It places each of us in the middle of the complexities of the city.

The complexity of urban health

The limits of medicine - Ivan Illich

I have ranged widely in this survey of the complexity of urban health and it is not easy to pull it all together. Nonetheless I have found that Ivan Illich's book Limits of Medicine does provide some context in which to understand the processes described above.

Illich's argument is basically that the modern pursuit of health through medicine has created the unexpected feedback of a sick society where the achievement of personal autonomy and health is increasingly difficult. My experience suggests that Illich is fundamentally right. Illich's argument has three basic pillars:

Iatrogenesis is clinical when pain, sickness, and death result from medical care, it is social when health policies reinforce an industrial organisation which generates ill health; it is cultural and symbolic were medically sponsored behaviour and delusions restrict the vital autonomy of people by undermining their competence in growing up, caring for each other, and ageing, or when medical intervention cripples personal responses to pain, disability, impairment, anguish, and death.

Iatrogenesis is the causing of sickness by doctors and Illich sees it as having the three forms described above. The clinical is fairly straightforward and is now well established through the work of magazines like What the Doctors don't tell you even if it still struggles with the power of the medical establishment. But it is perhaps in the notions of social and cultural iatrogenesis that Illich's insight is the most profound and the least acceptable.

We can see here the effect of the NHS struggling to deliver healthcare to the nation and finding itself caught up in endless complexities because health is removed from the arena of personal responsibility and becomes controlled by a medical elite on a quasi religious mission. Illich particularly identifies the importance of diagnosis which turns someone's complex experience into scientific jargon, transforming doctors from ministers to sick people into solvers of medical riddles. This in turn relates to cultural iatrogenesis where people look to medicine to solve the riddle of their lives rather than learning to live with suffering and joy as responsible and autonomous individuals and communities

What is crucial for Illich is this art of living. This is not something that can be easily reduced to a simplistic notion such as 'coping' which is a term he uses in the original book but now rejects (see preface to 1995 edition); for it is not a technique but a lifelong learning. What made me respond to Illich was that I could see this learning happening in my own life through the stories told above, where I eventually began to learn that my health was my own responsibility not that of the medical system. What life is about is living with suffering and its inevitable interweaving with joy and the mundane. Most forms of modern healthcare, mainstream or alternative, do not seem recognise this at all, but rather offer the El Dorado of painless cure. The NHS seems trapped in this expectation that it can deliver health despite the fact that many from Bevan to modern inner city GPs are only too well aware that this is a ridiculous fiction. We must not only take responsibility for our own health (as the New Age health gurus tell us), but also for our own suffering which we cannot always transform into the modern god of at glowing vitality. There are, however, some models of healthcare which might enable us to recover our dignity - one is independent midwifery

Independent midwifery - a new model of healthcare

As previously outlined independent midwifery arose out of the relentless mechanisation of midwifery in the 70s. Giving birth had been turned into a sickness which needed to be managed in hospitals by obstetricians and their midwifery acolytes. There always existed in Britain, however, a tradition of the midwife as an independent practitioner who was not dependent on a doctor. Some midwives, therefore, decided to leave the smothering arms of the NHS, not for the financial rewards of private medicine but in order to recover the ancient art of midwifery - being alongside women.

The independent midwife practices mainly in the homes of the women she is assisting. Antenatal visits are not merely exercises in clinical investigation but opportunities to build the relationship and understanding which will become crucial during the climax of labour and birth. Technology is used where necessary e.g. sonic aids to listen to the baby inside the womb and the woman might choose to make use of the NHS for scans, but what is avoided is unnecessary interventions which intrude into the dignity and privacy of pregnancy. Similarly labour and birth are usually undertaken in the familiar surroundings of home where the woman is encouraged to do what makes her feel comfortable and relaxed rather than fit into what is convenient for medical staff. Pain relief in the form of gas and air can be provided but often birth is a completely natural process. If labour does not proceed satisfactorily women can be taken into hospital if they want to have a Caesarean or some other form of technological intervention. The midwife, however, seeks only to provide information about her options rather than take decisions for her. So while a normal natural birth is not always possible the woman has the best possible chance to achieve it. She is encouraged to take responsibility for her own birth rather than off-load it onto the professionals.

Independent midwifery has a curious role in British midwifery. On the one hand independent midwives are praised for being at the cutting edge of modern midwifery and turning back the tide of expensive and over-technological care. The government report Changing Childbirth looked to independent midwifery as a role model where continuity of care was provided and the woman rather than the professional was centre stage. Nonetheless independent midwives evoke complex reactions - many health professionals find them scary because they eschew the technology on which they rely. The RCM (Royal College of Midwives) refuses to insure them and for this reason most hospitals refuse to allow them to practice on their premises. The latest twist to this story is that the midwives new regulatory body - the Nursing and Midwifery Council is thinking of not allowing midwives to practice without insurance because of fears that they (the Council) will be liable to prosecution. This would eradicate most independent midwifery because insurance is only available at the same rate as obstetricians i.e. £18 000/year . Midwives have a long history of being controlled and stigmatized as witches and threats to public safety and whilst most midwives are now safely contained within the NHS independent midwives retain the ability to threaten and disturb. The danger for independent midwifery, apart from it being wiped out by our increasing obsession with risk management and legal liability is that it will internalize its marginalisation - unduly distancing itself from the mainstream and over identifying with alternative technologies - such as homeopathy. This might distract it from its woman centred distinctiveness which is neither alternative nor mainstream.

Independent midwifery is rooted in the belief that birth is normal and that even potential difficulties such as breach births are normal. It gives us a glimpse of healthcare as an art which says that suffering is normal and something which we do not need saving from, but rather skilled compassion as we experience it and the personal craft and courage to welcome it as part of normal life in all its richness. As Illich says:

Conclusion

Looking back on this examination of healthcare in London I feel very small. One person amongst the millions of the city searching for what it means to be healthy. We have all been taught to be dependent upon the NHS which, whether we supplement this with private or alternative medicine, is perceived as the bedrock of our health. It's enormous resources and vast brief is our insurance against suffering. This is why the debates about it are so heated and contentious for every politician, interviewer, expert and columnist has an intimate interest in the subject which relates to their most profound hopes and fears. People often express that their one desire is that they should remain healthy. The fear of illness and death underlies all our lives and makes us vulnerable to promises of easy salvation. Why else is the quack such an ever present character? Health has become a search for solutions - the search for solutions to illnesses, the search for solutions to the management of NHS resources, the search for the solution to our fear of ill-health. But it is this search which leads us into complexities which overrun us and create ever more intractable problems. The moment when we realise that our search for solutions has caused us to loose our humanity is a time for humble reappraisal as is well illustrated in this story arising from installing a video camera in a labour ward:

In one labour, the woman was coralled on a bed in the middle of the room. People came in and out with barely a nod in her direction and on one occasion the husband, who had spent most of the labour standing (and who was not invited to sit down) ended up sprawled in a chair just watching his partner. The midwife had her back to the woman and concentrated on her notes while the groaning woman ended up trying to rub her own back! ... Mo Harris remarked that she watched the videos later and was concerned about the behaviour of a midwife who came into the room without knocking, looked at the monitor and spoke to the attending midwife and left. She had to watch the video a number of times to check because the midwife concerned was herself. She commented that with her awareness of the importance of being 'with woman' she was shocked that she too had behaved in such an insensitive way.
(Beech 2002)

We can recognise the problems and the increasing complexity of the healthcare system (Plsek & Greenhalgh 2001) but moving into a different place is not so easy. Why shouldn't our solutions to the problems which our search for a solution to the problem of illness caused, itself create further problems and further alienate ourselves from our humanity? Certainly the solution of suing or stigmatizing doctors isn't going to solve anything. Our only hope is to move beyond illnesses and technical solutions to a focus on what people actually experience. And focusing on people ultimately means that I focus upon my own attitudes and what I desire for myself.

In my own situation of deteriorating health I find myself needing to welcome illness as an inevitable part of life, maybe a shadowy part of life, but nonetheless part of what makes me a human being rather than a zombie. We must all have welcomed illness at one time in our lives - who of us has not secretly enjoyed the week off with flu which rescues us from an over busy schedule? More profoundly many people with chronic pain have experienced the coming to terms with their pain as a liberation from a hectic and unreflective life. Certainly making friends with our death is central to many spiritual traditions, and if not with death then why not with pain and illness? (Callender 1999). I find my struggle with chronic pain like walking through a muddy field of clay - every step cloying and frustrating: an experience , perhaps, not unlike that of being the Secretary of State for Health (if less well paid). But as I reflect upon it I realise that that clay can be shaped, moulded and baked into bricks, tiles and forms of great beauty. And I also remember the story of clay being formed into a figure of supreme grace into which the creator breathed the very breath of life. What if this could be the ultimate destiny of my suffering?

Epilogue

My story has been one of increasing ill health since I was 16 years old. In the months after writing this essay my health deteriorated considerably -- I became virtually housebound needing cabs or lifts to get around and having major problems with my voice. I felt as if I had truly reached the end of ordinary life. I increasingly shied away from treatment seeing health professionals more as a source of knowledge and insights about my body than as people who could bring a cure. I was struggling and somewhat withdrawn into myself but did feel a kind of peace as I gave up the struggle to be normal. Recently I came across a book on the Internet about self massage which has enabled me to engage with my body in an intimate and precise way. For the first time in over 20 years I have gained some understanding of why I am experiencing pain and find myself able to ameliorate the pain. It is brought a new hope into my life and reinforced for me the message of this essay -- that we must take responsibility for own pain. Not that we are self-sufficient or necessarily able to cure ourselves, although this might be possible, but rather that pain truly is part of life and as we embrace it and seek to understand it we become more fully human.

Bibliography

AnnCallender Paths through Pain. DLT 1999
Beverley Beech The Rising Caesarea Rate 2002 in Aims Journal. Vol.13 no.4 Winter 2001-2002
Clair Davies The Trigger Point Workbook
David Widgery Some Lives - a GP's East End SinclairStevenson1991
Frank Pierce-Jones The Alexander Technique: body awareness in action Schocken Books 1976
Hilary Jones Doctor, What's the Alternative? Hodder and Stoughton 1998
IMA Register of Independent Midwives. March 2001
Ivan Illich The Limits of Health - medical nemesis
Kings Fund Healthcare U.K. - the Kings Fund review of health policy 1999/2000
Kings Fund London Commission Transforming Health in London Kings Fund 1997
Michael Fitzpatrick The Tyranny of Health. Routledge 2001
Michael Rosen David Widgery 1947 - 1992, Writer, Journalist, Doctor and Activist - An Obituary by Michael Rosen
Mike Sheldon Whole Person Healthcare March 2001
Nicholas Timmins The Five Giants: a biography of the welfare state. Harper Collins 1995
Paul Plsek & Trisha Greenhalgh The Challenge of Complexity in Healthcare BMJ Volume 32315 September 2001 p625
Sean Boyle & Richard Hamblin The Health Economy of London Kings Fund 1997
The Poetics of Propaganda - David Widgery
The Society of Teachers of the Alexander Technique Directory 1997

This section is heavily dependent on Timmins 1995

I had an operation on a pilonidal sinus which when they got round to operating on it had healed itself, but the doctors went ahead 'just in case'. I have not been able to sit down since.

This threat has now, temporarily, been removed not least because no one is offering insurance of any sort to midwives