Andrew Lawson was the kind of man whose force of personality could shake things up, even in a gargantuan organisation like the NHS. A consultant anaesthetist, he devoted his career to sparing the sick both the agonies of illness and the torments of treatment. Among those who sought him out, his wife remembers, was an MI6 officer who had to live with the crippling after-effects of torture.
Lawson understood that while doctors are captivated by diagnoses and diseases, those being treated are overwhelmingly concerned with something else entirely: pain.
One day in 2007, however, he was the one who began to suffer. “I have not felt myself,” he wrote in May that year. “I’ve had difficulty in energising myself.” Struggling with flu-like symptoms, he found himself impatiently berating his wife, Juliet. “I want everything to happen sooner rather than later,” he noted. When Juliet went away on business for a week, Lawson found himself unusually, and unaccountably, upset. Something was up.
He got a colleague to perform a chest X-ray. Just two weeks earlier he had been skiing in the French Alps. The results of the X-ray came back. He had mesothelioma, an incurable cancer that affects the pleura, or lining of the lung.
With most cancers, it is hard to know the exact cause. Though some smokers get lung cancer, for example, not all lung cancer sufferers have smoked. But mesothelioma is different. In almost every case, the cause is exposure to asbestos – a fibrous building material once dubbed “miraculous”, but now known to be mortally dangerous.
For most of us, mesothelioma has been an easy disease to ignore. Asbestos, after all, is a product of the past. The most dangerous type of asbestos has not been used in Britain since the 1960s, when a voluntary industry ban came into effect. Even when it was used, only people in specific industries worked closely with it – pipe laggers, builders, carpenters and shipyard workers, for example. An industrial toxin from another era, it hardly seems cause for concern today.
But such complacency is misplaced. Britain, it turns out, is today at the peak of a mesothelioma epidemic. There are more mesothelioma deaths here than in any other country on the planet. With an annual toll of about 2,500, more than twice as many people die of the disease as die in accidents in motor vehicles.
The reason that we are feeling its deadly effects now is that, though asbestos use has been illegal for years (all types of asbestos were eventually banned by law in 1999), it usually takes decades for mesothelioma to develop. And the mesothelioma scourge is not confined to veterans of industrial building jobs. Asbestos has been, and in many cases still is, embedded in the homes we live in, the offices we work in, the schools we are educated in, and the stores we shop in. As a result, mesothelioma is no respecter of class, wealth, occupation, or age. The bastions of privilege, from smart London department stores to public schools, have proved no refuge. The Houses of Parliament are riddled with asbestos. Even the hospitals that are meant to make us better have been reservoirs of this deadly carcinogen.
Andrew Lawson was not old. Nor was he a pipe lagger. In fact, he struggled to think where he might have come into contact with asbestos. Then he put his finger on it. “It seems that there may have been a lot of asbestos in the tunnels at Guy’s Hospital where I spent six years training,” he wrote. “Everybody – students, nurses, doctors and porters – used the tunnels. One wonders how many of my contemporaries will get the same disease?”
It was a question to which, sadly, he was able to provide a partial answer. “Of four doctors who trained at Guy’s Hospital and who subsequently developed mesothelioma in the past five years,” he noted in a letter in 2010, “I am the only one left alive.”
How many of us will get this disease?
Andrew Lawson was diagnosed with mesothelioma when he was 48. When he died, on February 17 this year, he was 55. To survive so long is unusual. Fifty per cent of mesothelioma sufferers are dead 8 months after diagnosis. It is always fatal.
So now we can only echo Lawson’s question: “How many of us will get the same disease?”
According to Britain’s leading expert on mesothelioma, Professor Julian Peto, our best guess is that between 1970 and 2050, when the asbestos epidemic in Britain should have played itself out, some 90,000 people will have died. Most currently have no idea that they will die this way.
A quick glance at the reports from the courts, where those affected often turn for compensation, shows how far the scourge of mesothelioma has spread. This June, for example, Marks & Spencer admitted negligently exposing Janice Allen to asbestos. She worked for the chain for nine years, from 1978 to 1987, supervising clothes sections at two sites – one of which was the flagship store on Oxford Street. Mrs Allen was only 18 when she started working at M&S. Now she has two children in their 20s.
“Before this happened,” she says, “I had never heard of mesothelioma, I barely knew about asbestos. I never would have dreamed that I would be affected by it.”
Few people do know much about asbestos. In fact, asbestos describes not one substance but a group of six minerals. They get their name from the word “asbestiform” – which describes the fibrous structure which endows them with strength and flexibility. Of the six, three have commonly been used in the building trade.
Chrysotile, commonly known as White Asbestos, is by far the most frequently found in buildings today. It was used in roofing panels, floor tiles, pipe insulation, boiler seals, even brake linings in cars. It is less lethal than other forms of asbestos, but it’s still considered a “major health hazard” that can kill by the EU and WHO.
More dangerous, however, are Brown Asbestos (amosite) and Blue Asbestos (crocidolite). Britain was once the world’s largest importer of Brown Asbestos, and experts suggest that “there is strong but indirect evidence that this was a major cause of the uniquely high mesothelioma rate [in the UK]”.
Janice Allen may not have thought of herself as a typical victim of mesothelioma, but Julian Peto’s work suggests that her story is far from uncommon. He has produced a study of sufferers which suggests that “a substantial proportion of mesotheliomas with no known occupational or domestic exposure were probably caused by environmental asbestos exposure.”
Much of that exposure, he says, is due to “normal occupation and weathering” of our buildings. No one, it seems, can be sure that they are safe.
A report from Goddard Consulting, which looked at the Palace of Westminster, shows how people, even in the heart of government, might have been exposed unawares. In 2009 Goddard reported that service shafts and piping ducts behind Parliamentary committee rooms were contaminated with asbestos, whose lethal fibres could be disturbed by something as innocuous as “strong currents of air”.
MPs are frequently accused of looking after their own interests, but in this case it seems the opposite may have been true. While the Parliamentary Works Services Directorate insisted that the Palace of Westminster had been given “a clean bill of health”, it is now accepted £1bn of work lasting several years is required to overhaul Parliament, upgrading electrics and removing asbestos, and that after the 2015 general election MPs may sit in the nearby QE2 Conference Centre rather than on the Green Benches at Westminster.
The Goddard report noted that “the presence of asbestos has not been managed in accordance with the various regulations”. It is impossible to know if this mismanagement will cost lives. All anyone can do now is wait.
One person who has never been able to pinpoint his exposure to asbestos is Graham Abbott, a GP. Like Andrew Lawson, Abbott, 50, suspects that he was exposed to asbestos while working in hospitals. “I have worked at a hospital where positive asbestos claims have been made,” he says, “But I can’t prove it in my case. It’s so hard to remember all the places one has worked in, and the dates.”
What he remembers clearly is the day early in December in 2009 when he was overcome with what felt like a fever. He was 45, and in the middle of a late evening surgery. “Suddenly I started feeling shivery. It came on very quickly. I felt dreadful. I didn’t think I was going to be able to drive all the way home.”
Being a doctor, Abbott knew that the pain was coming from the pleura, the lining around his lungs. But like Janice Allen, he simply had no reason to suspect mesothelioma. He ended up spending a month off work. Puzzled doctors gave him chest X-rays, and administered pleural catheters to draw off fluid from the lungs and send it for assessment. Yet the condition went undiagnosed.
Slowly his health improved and he went back to work. But from time to time the same symptoms returned, often after he took exercise and was breathing hard. In 2011, one of Abbott’s patients arrived at his GP’s surgery with similar symptoms to him, and was subsequently diagnosed with mesothelioma. But even then Abbott didn’t make the connection with his own case. After all, his patient was decades older, and had worked directly asbestos. The link in that case was clear.
In September 2011, Abbott’s condition worsened again, and his consultant took his CT scans and X-rays to a panel of experts. In December 2011, exactly two years after Abbott started feeling unwell, a probe, equipped with a camera, was fed into the cavity between the lining of his chest and the lining of his lung.
“I’m an optimist. I tend just to plod along,” he says. “I hadn’t worried about it too much to be honest. But Rachel, my wife, was worrying.” The result of the biopsy came in the week between Christmas and New Year: “I was told it was mesothelioma.”
Pupils perched their Bunsen burners on asbestos mats
And it is not just hospitals. Asbestos was frequently used in offices, shops, libraries and town halls for its marvellous insulating and flame-retarding properties. Schools too. In fact many people will have been first exposed to asbestos in the classroom. Up and down the country, in myriad chemistry lessons, pupils have perched their Bunsen burners on asbestos mats. Websites have sprung up to address the issue of asbestos in schools.Meanwhile, in our homes, items as innocuous as floor tiles or shed roofs have routinely contained asbestos.
“It’s an industrial poison built into large amounts of our housing stock,” notes Andrew Morgan, the lawyer who represented Andrew Lawson in his case against Guy’s Hospital. “In one case the only contact the woman sufferer could think of was pulling down a garden shed in the 1970s. So be careful how you pull down the garden shed.”
The impact of diagnosis, knowing that the disease is incurable, is huge. “It takes a while to sink in,” says Graham Abbott. “I went back to work and tried to carry on but realised that I couldn’t concentrate on what I was doing. I was at the surgery for two weeks. Then I realised that I would have to leave and sort myself out.”
“Well, I won’t see Christmas again”
One of the hardest things was moving from the position of doctor to that of patient. Like countless patients before him, he remembers feeling bewildered by the amount of information to get to grips with. “It was hard to take everything in,” he says. “I asked my consultant ‘what is my likely survival?’ I was quoted about 12 months. I remember thinking ‘Well, I won’t see Christmas again. That’s it.’”
Mesothelioma is particularly pernicious, because it is the mechanics of how we stay alive – the very act of breathing – that causes the cancer that kills.
British Lung Foundation
The normal options for treating other forms of cancer work less well with mesothelioma. The effectiveness of surgery, for example, is hotly debated. Some feel it is worth trying. Treasure disagrees. “You can’t excise the pleura,” he says. ”You can’t get your knife round it.” Meanwhile the cancer “is not very responsive to chemotherapy”, which “has an effect” but does not cure. “Every now and again you get long survivors,” says Treasure. “But in the end they all die.”
Happily, some patients do live far, far beyond expectations. The author Stephen Jay Gould died 20 years after diagnosis. Two-and-a-half years after his own diagnosis, Graham Abbott is still battling on.
After contacting mesothelioma Abbott was put in touch with Andrew Lawson, who, four years after his diagnosis, had become a one-man support and advice bureau for fellow sufferers. “Hello, Cancer Central,” he would announce cheerily when they called.
“He was very positive,” says Abbott. “He had been diagnosed 4 years before and was still very active.” Initially, Abbott had been offered six cycles of chemotherapy that would take four months, and likely prolong his life by just one month. “I felt desperate,” he says. “I felt like giving up.” Lawson, however, “managed to put a slightly better tint on things.”
After seeing several consultants, Abbott decided to pursue his treatment with Prof Loic Lang-Lazdunski, professor in thoracic surgery at Guy’s. “We had an advantage in that I didn’t wait to be referred, I just rang them up and they saw me,“ Graham admits. “The average patient would have to get a referral and have funding approved.”
Money is crucial for those with mesothelioma to pursue the best available treatments. But when those treatments eventually, inevitably, fail, many sufferers are faced with another financial worry – about the future of the families they will leave behind. And so they turn to the courts in pursuit of compensation.
Andrew Lawson contacted Andrew Morgan, from Field Fisher Waterhouse LLP. “It has been known that asbestos is noxious to health since 1898,” says Morgan. “But what changed in the 1960s is that it was realised that even very low levels could be a risk to health. That is where company negligence came in.”
Andrew Lawson and Guy’s hospital eventually settled their case, but it was not what Morgan calls a “full-value settlement” since Lawson could not prove definitively that his mesothelioma was down to asbestos exposure at Guy’s. After the inquest into his death, a spokesman for Guy’s did confirm, however, that “the asbestos in the basement area concerned was removed in the 1990s”. That was too late for Andrew Lawson.
In fact, pinning lethal asbestos exposure on one company or place of work – usually decades after the fact – has proved a huge problem for mesothelioma sufferers seeking compensation. Many of their former employers have changed hands or gone out of business. Insurance records may have been lost. And those defending themselves from claims know they have time on their side, which the claimants certainly do not.
In response, this year has seen major new legislation which makes it easier for those with mesothelioma to claim compensation even if their former employers can no longer be traced. The law has created a £350m pot of money, funded by the insurance industry, for those diagnosed after July 2012 who can prove exposure but have no one to sue. In these cases sufferers will be awarded 80 per cent of what a court might have awarded in a normal compensation case – about £120,000. About 300 successful claims to the scheme are expected each year.
Andrew Morgan, like many involved with mesothelioma sufferers, thinks that £350m represents “a very good job” for the insurance industry. “It’s a deal written by insurers for insurers” he says, suggesting that the sum is a quarter of what insurers would have had to pay if the passage of time had not intervened, and mesothelioma sufferers were able to track down companies and sue them in the normal way. Even Mike Penning, then Works and Pensions minister, admitted that the law was “not perfect”. But both Penning and Morgan admit that, with seven victims dying each day, quick action was needed. “People are suffering so much, and need help today,” said Penning during the Mesothelioma Bill’s second reading in December last year.
By then, Graham Abbott had been in the hands of Prof Loic Lang-Lazdunski for 19 months. After their initial consultations, Lang-Lazdunski advised surgery which, in contrast to Tom Treasure, he believes has a positive effect. This was followed by radiotherapy and chemotherapy – a tri-therapy for which Lang-Lazdunski can boast five year survival rates as high as 40 per cent. Abbott felt empowered. “That of course is one of the most important things,” says Abbott. “You see it in patients all the time. There is some drive that keeps you going. When you give up you can deteriorate very quickly.”
Graham Abbott went in for surgery in March 2012. By the end of August he had completed the last of his six cycles of chemotherapy. Follow-up scans revealed no sign of the disease.
“Then I had my scan in March . There was multiple spotting [of cancer] around my chest. I was just about to turn 50.”
“It’s not life threatening. It’s life ending.”
Once again Abbott put himself through six cycles of chemotherapy. Now there is no sign of the tumours. But the process is both physically and emotionally gruelling.
“You have to think about practical things – about the finances when I’m gone for example, or showing my wife how the boiler timer works. When you get bad news you start getting negative. You have to look forward.” As the father of Ellie, 16, and Tamsin, 14, that is not always easy.
“It’s hard as a parent,” he says. “It is difficult to know what to say and how much to say. When I was first diagnosed I told the girls that I had a condition that meant I wasn’t going to become old. They reacted very differently. Tamsin is very sociable and boisterous. She told her friends and we got lots of calls very quickly. Ellie was more reserved. She didn’t say much.”
Such conversations are something that all cancer patients must face. But for mesothelioma sufferers such discussions are not leavened by hope, by even a glimmer of a possibility of survival. The disease carries with it (even as it did, eventually, for Stephen Jay Gould) a grim certainty. As Andrew Morgan says, “mesothelioma is not life threatening. It’s life ending.”