Reality Check

I went to talk about my book to a cancer support group in Newham, East London, a couple of weeks ago. It was a salutary experience, and served as a sobering reminder that, whatever progress has been made in treating the disease, it still devastates lives and causes profound anguish and pain.

The group meets in cramped premises above a doctor’s surgery on the edges of a housing estate near a railway line. Because of thefts, there are metal grilles on the entrance door which is controlled by an entryphone. It gives the feeling that the place is slightly under siege, a small haven of warmth and safety in a cold and hostile world.

This is true at a much deeper level than simply the physical one. The tiny staff that runs the centre (mostly volunteers) not only organize meetings, but arrange counselling and complementary therapies for patients and their carers. They provide assistance in applying for benefits, plan outings and day-trips, and offer teaching sessions in helpful skills such as computer use. In short, they lay on comprehensive and much-needed programme of help and support to all those whose lives have been affected by cancer.

The people I met were quietly warm and smiled in welcome. They clearly took great pleasure in one another’s company. But you didn’t have to talk to any of them for very long before the extent to which disease had rocked their lives started to become apparent. Whether as patients themselves, or as close relatives or partners of people who had died of cancer, they all bore the wounds of savage illness, which were covered by at best the thinnest of skins. Their experiences remained raw and poignant, sometimes frightening.

My visit came not long after the government’s review of Incapacity Benefit in which it announced that doctors should be seeking to create a “well-note” rather than a “sick-note” culture, and focus upon what patients can do rather than what they can’t (i.e. get them back to work). To those in the frontline of serious illness this seemed a grim and insensitive proposal that simply shows a woeful lack of understanding and experience on the part of those proposing it. With suppressed but heartfelt emotion, that encompassed great hurt and weariness as well as some scarcely veiled bitterness and anger, they told me what my own experience confirms: ”The people in power who come up with these things have simply no idea.”

A Scary Story

From the Camden New Journal, 7 February 2008

Review by Daniel Allen

"There must have been occasions during Colin Ludlow's hospital odyssey through bowel cancer and countless operations when he wanted to turn to the wall and say: 'Enough. I want to die.'

"The NHS appears to have done its best to oblige, and the fact that he is alive to tell the tale is testament as much to his understated courage as it it is to the doctors and nurses whose skills just about prevailed in the face of huge systemic failings.

"His account of a nightmarish five months spent in the Royal Free Hospital is a compelling meditation that mixes Shakespeare and surgery, Marx and mashed potato ('lumpy' - hospital food is still dire.)

"Above all, it exposes the patient in contemporary healthcare as little more than a pinball, banging about between the outposts of a system that is meant to function seamlessly. Patient-centred care? Not quite.

"Ludlow, a television producer, is an excellent guide through this wasteland. Incredibly, he avoids mawkish self-pity, to which he has a greater claim than most, and tells his tale of unfolding woe with a surprisingly light touch.

"As illness and, inevitably, MRSA grip, he descends into a version of hell where he seems destined to spend eternity waiting for operations that get cancelled and where the devil comes dressed as a dietician with cruelly inept advice.

"His professional background enables Ludlow to compare and contrast the health service of popular TV-fuelled perception with blunt reality.

"As he drifts in and out of consciousness and, more than once, pushes at heaven's door, Ludlow's drama is like Holby City on hallucinogenics; a weird, warped world where individuality is stripped away and the anticipated 'bastion of order' becomes a vision of chaos. 'I remain haunted by my time in hospital,'he writes. One can see why. Four years on, he is still recovering.

"The suspicion that Ludlow may have once upset some vengeful deity is compounded not just by his mother's death, but by the fact that his wife, Anna, also endured bowel cancer.

"Her journey back to relative health sounds straightforward in comparison, which says everything about the gravity of his illness and nothing about the insignificance of hers.

"Bowel cancer is not something you shake off: with her form of the disease, only 43 per cent of patients live for five years or longer after surgery.

"The fact that they are both still alive causes Ludlow to wonder whether, given all he has experienced, he is lucky or unlucky.

"'My cancer hell' has become a popular literary genre and it is reasonable to ask what extra Ludlow brings to the table. Perhaps not much if you are entering your own period of anguish and are looking for clues about how to emerge intact.

"There is, on the surface, little of comfort here. By the skin of his teeth, however, Ludlow gets through; that he does so in the face of everything that illness and a lumbering, malfunctioning Leviathan of a system can chuck at him is, in the end, a cause for raucous celebration of human fortitude.

"In the face of such spirit it seems churlish to criticise, but one small irritation is Ludlow's description of past events in the present tense. This will not jar with everyone, but when it does it may detract from what is otherwise a powerful account.

"It is customary to say of stories such as Ludlow's that they should be 'required reading' at the Department of Health. It is also customary for the Department of Health to ignore such suggestions and live instead on a diet of policy drafts that promise much but, if Ludlow is right, deliver little.

""And there's the tragedy: the NHS has more to learn froma single patient's account of what can go wrong than from a whole legion of policy wonks.

"Down on the frontline, where the battle between demand and resources rages at its most cacophonous, it seems the last voice to be heard is still that of the patient."

Special Treatment

“Does that mean you’re going to get a lot of money?” enquired my 13-year-old son as he scanned the headline in the evening paper: “Telly’s Leslie wins £500K (sic) MRSA award – Record NHS payout for actress”. “I’m afraid not,” I replied tersely. He wasn’t surprised.

“Is it just me, or is that outrageous?” I asked a friend the following day. Imagine my feelings when he told me that the story I read had left a nought off, and that the payout was actually £5m. Curiously, it didn’t fan my sense of outrage. It just left me feeling rather disgusted and depressed.

The illness has clearly blighted the actress’s life. But despite having endured an experience myself of being admitted to hospital and things then going horribly wrong, I find I have a stubborn lack of sympathy or fellow-feeling. Why is that, I ask myself?

It’s partly because my own experience of MRSA was such a non-event – a completely innocuous skin infection cleared by a few of smears of cream in its most recent manifestation (see my blog Return of the Superbug). Even when I contracted it post-operatively five years ago, I would never have known I had it if the doctors hadn’t told me. There were no symptoms as such, and it was treated with intravenous antibiotics that had no discernible impact on my condition. I did notice the pneumonia that I contracted, probably as a result of having MRSA, but even that was pretty small beer compared with the raging fever and massive stomach haemorrhage that landed me at death’s door in Intensive Care and required 45 units of blood in transfusions over one tumultuous weekend to replace what I had lost.

So I find it mildly bewildering when people ask me in disbelief “You’ve had MRSA then?” I’ve done a number of photo-shoots for the press over the past week to promote my forthcoming book, and that is the question that every photographer has raised – usually in a tone of awed amazement that I am still alive. I feel a bit of a fraud when I shrug it off as having been the least of my worries.

Still, the mythology that surrounds the disease has served Leslie Ash well – even if she actually caught the strain of staphylococcus aureus that does respond to most antibiotics. She has clearly suffered far more radical effects than me of her hospital-acquired infection. But when the average payout for breast cancer blunders is £25,000 – and some women have died or been comparably damaged as a result of these – her award does seem to represent special treatment.

That’s also true if you compare it to other awards made to MRSA victims. The award-winning TV documentary a couple of years ago A Dirty Weekend in Hospital featured a host of people who had suffered hugely distressing consequences from having had the disease, but apparently Leslie Ash’s payout is equal to the total of all the payouts to MRSA cases in the period 2004-6. Her lawyers have argued that this reflects the scale of her lost earnings, but having worked as a TV drama producer for many years and knowing well the kind of fees that different actors can command, I cannot help feeling that the payout reflects an extremely generous or optimistic assessment of these.

The other thing that grates for me are the circumstances that landed Leslie Ash in hospital in the first place. Apparently she was admitted with a punctured lung and two broken ribs after an “energetic sex session” with her husband. What the couple get up to in private is entirely their own affair, but when it ends with one of them in hospital seeking help and that person then contracts an infection (which is always a risk when you go to hospital), it seems a bit rich that the rest of us end up having to foot a massive bill in consequence.

This is a dangerous line of argument, because it begs the question of where you draw the line when accidents might be considered to be people’s own fault. Are you less deserving of sympathy or recompense because you were hospitalized as result of a skiing accident or bungee-jump? Because of a car-crash or from smoking?

I don’t think the issue would arise if this payout had been on a more moderate or “normal” scale. But when £5m is being taken out of the health service, which will deprive others of treatment, it is hard not to entertain such thoughts. One of the underlying principles of the NHS is of people’s right to be treated more or less equally when confronted with ill-health. By agreeing to this immense award, the NHS managers, or their insurers, are bowing to the celebrity culture that so bedevils our society, and rubbing our noses in the fact that, sadly, the system does not treat everyone the same.

The End of History

Last month the Royal Free Hospital re-named its wards. The historic titles were scrapped and replaced with functional labels that indicate the floor on which the ward is situated and the direction it faces. So Jex-Blake Ward, for instance, which was named after Sophia Jex-Blake, whose pioneering work in doctors’ training opened up the medical profession to women, became 12 South. The distinguished physicians and generous benefactors who shaped the hospital’s history are no longer to be part of its living fabric.

The Royal Free’s history is a particularly stirring and distinguished one. It was the first hospital in the country to offer free care to those who could not afford to pay for it. A hundred and twenty years before the NHS came into being, it established the principle that the only requirement for treatment was medical need. It was also the first hospital in England to offer clinical facilities to female medical students, without which they could not be properly trained. It thus laid the foundations for two of the fundamental precepts of contemporary healthcare in Britain, and it consequently seems a shame that Elizabeth Garrett Anderson – the first woman to qualify as a doctor in this country and also the inaugural Dean of the Royal Free Medical School – will no longer be associated with the hospital on a routine daily basis. The ward named after her is now known as 11 West.

But – sentiment aside – does this really matter? The re-naming is apparently intended to make it easier for emergency “crash” teams to find their way round the building, and also to make fewer demands on the literacy skills of the hospital’s patients. Quite apart from being fantastically condescending, however (are we seriously expected to believe that doctors able to perform life-saving resuscitation procedures are unable to locate a ward because it is identified by a name rather than a directional code?), I believe this change does undermine - in however small a way - the fundamental nature of the institution.

As I explain in my forthcoming book Shadows in Wonderland (to be published on 7 February – see www.hammersmithpress.co.uk) the Royal Free, like most modern hospitals, conforms to almost all of the criteria that the French academic Marc Augé uses to define “Non-Places” – the faceless environments such as airports, motorway service stations or supermarkets that form such a major part of the contemporary landscape, and from which we feel so painfully alienated. Prominent among these characteristics is the way that these environments deny the past: “There is no room for history...what reigns there is actuality, the urgency of the present moment.”

Writers such as George Orwell and Milan Kundera have tracked the ways in which totalitarian regimes eradicate and re-write history to suppress opposition or criticism, and legitimize their abuses of power. Conspiracy theorists might well see this “innocent” change of names at the Royal Free as part of a sinister, covert campaign to erase the past and move away from free, universal healthcare based on social and sexual equality towards a private, marketized system based on the ability to pay. From this perspective, the name of the hospital itself will be the next thing to change. Why remind us that hospitals once were free?

While I doubt the existence of such a coherent plan to dismantle the existing system, at a time when the future funding and nature of the NHS is being endlessly re-examined, I think it remains valuable to be constantly reminded that the compassionate inclusiveness and equality of hospitals today did not just happen by chance. They are the result of determined action by a host of committed and pioneering individuals over many years. It also does no harm to remember that many of the health service’s assets were not purchased by the state, but given for the public good by caring and enlightened benefactors. They are held in trust and not to be lightly “sold off” to balance the current balance-sheets.

Am I just an old codger who can’t bear change, or do others agree?

Return of the Superbug

I received a call from the Marie Curie Hospice in Hampstead last Thursday, and was told that I no longer have MRSA. The news came as something of a relief, even though I have been functioning quite normally for the past few months, despite being infected with the “hospital superbug”. Indeed, I even took a certain mischievous pleasure recently in bringing a polite drinks party conversation about the awful dangers of hospitals to a stunned halt by announcing “I’ve got MRSA at the moment actually.” The looks of horror and disbelief that greeted my remark, not to mention the visible acts of recoil, were a perfect joy to behold.

Nevertheless, having now had MRSA on three separate occasions over the past five years, I’m not sorry to be pronounced “clean”. The infection has made my frequent visits to hospital significantly more vexing and complicated, and this recent bout of the disease also prevented me from paying my weekly visits to the hospice gym.

I originally caught MRSA during a five-month stay at the Royal Free Hospital in 2003. It did have serious consequences on that occasion as I was profoundly ill, and I certainly could have done without the bout of pneumonia that it precipitated. Relative to my other problems at the time, however, it was not a major concern, and when I was eventually discharged I had apparently been cured of the bug.

It was therefore mildly distressing to be told 18 months later, after a routine test following further surgery at the hospital, that I had acquired the infection once again. I began a new programme of treatment and testing, but whether I achieved three consecutive clear sets of swabs, which is the condition for being pronounced officially cured, remains unclear. I believe I did, but some of the nursing staff at the hospital were not convinced. The tests were so protractedly haphazard and the results buried so deep in my copious records on the hospital computer, that it proved impossible to prove either way. The staff simply couldn’t find all the relevant data.

Thinking myself to be “clean”, however, I was slightly dismayed and perplexed to be informed by one of the nurses at the hospice recently that I had MRSA yet again. Given that I had been back in the Royal Free for another operation earlier in the year though, and that I only seem to have to set foot in the place to contract the bug, I suppose I shouldn’t have been surprised. The wound from my surgery was still spotting blood more than six months on, and a swab taken from the site revealed that MRSA was the reason.

This time, however, I was in a much better context for having the problem dealt with. The staff at the hospice gave me a tube of cream to rub on the wound for 10 days, and then organized regular weekly swabs to see whether I still had the infection. Within a month I had achieved the magic figure of three clear tests and was told that was “clean”. Which only leaves me now to ponder the banal miracle by which a few smears of ointment have vanquished such a legendarily potent – or at least persistent – superbug.

The Future of Hospital Care

The gleaming, new University College Hospital in London is a state-of the art institution. It is equipped with all the latest medical hardware; the wards are discreetly secured from unwanted intruders; many of the phones have mobile handsets so that staff can take calls as they go about their other duties. Although when I took Anna there last week the revolving door at the rear entrance was broken and the visitors’ toilet on her ward was blocked, after two years of use the environment remains impressively clean and well-ordered, and the staff clearly take pride in the high-quality facilities that the hospital provides

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The sense of cutting-edge modernity also extends to the procedures for admitting and treating patients, all of which have a comparably streamlined efficiency. Anna was admitted at 7.30am on the day of her operation, having been trusted to stop eating and drinking as required and take her ”bowel prep” at home without supervision. She went initially not to the ward where she would stay, but to an Admissions Lounge. From here she was called into a bay where she changed and saw the relevant doctors and nurses for her pre-operative consultations and checks. Then, when they were ready for her in the operating theatre, she made her way on foot down to the third floor where she was received by the operating team.

The surgery – which proved quite complicated and lasted a couple of hours – was performed “key-hole” using cameras in tubes and laser scalpels. Afterwards she was taken to a ward on the 13th floor where she spent the night. The next day, just 24 hours after the operation, she was discharged and came home. Twenty-five years ago, the same operation (to remove an ovarian cyst) involved a large 12 centimetre cut across the abdomen, a week to 10 days in hospital, and several months of painful recovery. Last week Anna left hospital – admittedly still weak and sore – with just four tiny incisions, each sealed with a single stitch.

Medicine has made extraordinary progress in recent decades and continues to do so. The sleek briskness with which Anna’s surgery was accomplished reflects the pared-down and highly focussed institutions that hospitals are now becoming. Preparation and recuperation are made the patient’s responsibility, with the hospital offering fantastic treatment but limited care. The patient is not reduced to prostrate passivity the moment she enters the building, but remains independently mobile until almost on the operating table. Relations with the nursing staff are restricted as the stays are so brief, and different people are responsible for admission and after-care.

Although primarily cost-driven, in general these are welcome developments for the patient as well as the NHS budget. No one wants to stay in hospital longer than they have to, and the more patients are able to retain their autonomy the better. Based on our experience last week, however, I do have a couple of small caveats. Anna’s operation was scheduled to take place at 10.30am (she was second on the surgeon’s list for the day) and expected to last up to an hour. Allowing for some slippage and time spent in the recovery room after she came round from the anaesthetic, it therefore seemed reasonable to expect that she would be back on the ward by 2pm. When I rang then, however, she had not returned, and since the ward only deals with the patients after their surgery the staff could not tell me when she actually went to theatre, nor of the reasons for any possible delay. I remained relatively philosophical at this point, but when I rang the ward again at 3.30pm and Anna still wasn’t there I began to fear the worst and imagine dreadful complications on the operating table. In fact she’d been in the recovery room since well before 2pm waiting for a porter to take her upstairs. With patients walking themselves to theatre, fewer porters are available to transport them when assistance is required.

The half-hour of mental torture I endured before a nurse called to say she was all right (sadly we have much experience of things in hospitals not going to plan) is perhaps a small price to pay for having her home so swiftly later. But along with the problems faced by patients who do not have relatives to care for them at home when they are still very weak and needy after surgery; as well as the increased risks of MRSA and other hospital-acquired infections resulting from the system of “hot-bedding”, these are the downsides that need to addressed if the pattern of high turnover hospital care which undoubtedly represents the future is to prove a genuinely brave new world.

Rain or shine?

For the past seven years Anna, my wife, and I seem to have been like the pivoted figures on a Swiss cuckoo clock that move in and out to predict the weather. Shortly before Christmas 2000, at the age of 43, she was diagnosed with bowel cancer, and retreated into the shadow of illness while I “stayed out” as the public face of our marriage. Two years later, after surgery, chemotherapy, some unexplained side effects and living with an ileostomy, she seemed well on the path to recovery and ready to emerge from the gloom. She had an operation to re-connect her bowel which we hoped would mark her return to “normal” life.

But on the day following her surgery, I was diagnosed with a tumour in my own bowel. As she moved into the daylight, I retreated into the murky depths of the hospital world where I was destined to remain for an unexpectedly long time. A series of fairly catastrophic complications following surgery to remove the growth meant that I spent five months in hospital, and was left so depleted that I have spent almost five years recovering. Gradually, however, I have regained my strength and begun to resume a life that is about more than just hiding in the shadows at home. A book I have written about our experiences is due to be published in February, and I feel that at last I am starting to move back into the outside world with everyone else.

However, just as this is happening Anna is retreating once more into the shadows. This week she returns to hospital to have an ovarian cyst removed. So the countervailing pattern of our health continues, and we both find ourselves wondering when we might be able to spend some time “out” in the light together.

Still, one consolation is that this time it’s a different hospital – the gleaming glass and steel of the new University College tower in central London rather than the decaying concrete of the Royal Free in Hampstead. Since ancient times there has been a belief that life moves in seven-year cycles or “climacterics”. Perhaps this shift marks the start of a new seven-year cycle for us. If so, I only hope that it proves less gruelling and traumatic than the last.