Dr Janet Leese, a GP, was only 57 when she was told that she was going to die because of something terrible that had happened to her at work.
It wasn’t that she had been infected with a disease from a patient, or been driven to exhaustion by her job. Instead, she was found to have breathed in dust from renovations at a hospital where she was training to be a doctor in the 1980s.
Floating in that dust were microscopic asbestos fibres, poisonous filaments from building materials that got into the delicate lining surrounding her lungs and caused mesothelioma, a deadly form of lung cancer.
‘She had just been to Hawaii with my father to celebrate their 25th wedding anniversary when she started to feel unwell,’ says her son, Richard Blunt, 30.
Dr Janet Leese, a GP, was only 57 when she was told that she was going to die because of something terrible that had happened to her at work
‘She was diagnosed with mesothelioma in November 2013 and by January 2014 she was dead. She was such a lovely person and so popular as a GP. They have since named a street after her — Leese Drive in Cheswick Green, near Solihull — where she had her surgery. She had so much more to give to the community and that’s such a waste.
‘But what makes me really angry is that her death was completely avoidable.’
Older generations will associate asbestos — a naturally occurring, mined silicate fibre — with post-war building booms, shipyards, mine shafts and car factories.
For 150 years, it was used to strengthen roofing and flooring, to provide insulation and as a fire retardant. Then, as proof emerged of the damaging effects it had on the lungs of workers in these industries, governments started implementing bans.
Iceland was the first in 1983, with the UK introducing partial bans later in the 1980s and a total moratorium on its use in 1999.
You would be forgiven, then, for thinking that asbestos, and the deaths it caused, were mistakes that we had put behind us. But you would be wrong.
Asbestos is a ticking time-bomb which successive governments have failed to tackle. According to research by think-tank ResPublica, there are six million tonnes of the stuff in 1.5 million UK buildings, including workplaces, public buildings — even schools — as well as a potentially massive number of pre-2000 homes.
A BBC investigation in 2018 found asbestos is present in 90 per cent of hospitals. And, according to Department for Education figures, 81 per cent schools contain it.
That’s a concern as children appear more vulnerable to the effects of asbestos.
‘The Government’s Committee on Carcinogenicity has calculated that a child exposed to asbestos at age five is five times more likely to develop mesothelioma than an adult exposed at age 30,’ says Dr Patrick Roach, general secretary of the NASUWT teachers’ union.
As for asbestos-related mortality being a thing of the past: in July, a report by the Health and Safety Executive (HSE) put the number of deaths linked to asbestos last year at more than 5,000. That’s almost 100 deaths a week.
More than half of those are due to the form of mesothelioma that killed Janet — and they are growing in number every year.
According to the HSE report: ‘Annual mesothelioma deaths in Britain increased year-on-year over the past 50 years, with just over eight times as many deaths in the most recent decade, 2011-20, compared with 1971-80.’
There were 2,544 mesothelioma deaths in 2020, 6 per cent more than 2019. In spite of these concerns, in July the Government rejected calls from the Work and Pensions Committee to begin a national programme of asbestos removal. They argued that removing it would create more problems than it solved — an approach regarded as disastrous by campaigners.
‘The position of the Government and the HSE is that removing the asbestos could be potentially dangerous to workers,’ says Sir Stephen Timms, chairman of the committee. ‘The current policy is that asbestos is safe if it’s in an enclosed area and it isn’t disturbed, but this is an unsustainable position.’
During the committee’s hearings earlier this year, Chloe Smith, the Minister for Disabled People, Health and Work, told MPs that the Government had ‘a clearly stated goal’ to ‘work towards there no longer being asbestos in non-domestic buildings’.
Helen has three daughters, aged 16, 13 and ten and she is desperate to see them grow up. At present, her cancer is stage 1, the lowest. ‘I started chemo in September last year and finished in January this year,’ she says. ‘My first scan showed the cancer was stable but a second scan showed growth
‘But there is no over-arching policy for the removal of asbestos in the UK,’ says Sir Stephen Timms. ‘There needs to be a plan; starting with a time scale.’
The current inaction has infuriated many. ‘Simply leaving asbestos in situ is not a solution to this problem,’ says Richard Blunt. ‘Asbestos might be considered relatively safe one minute, but then something unexpected could happen and it is exposed and becomes dangerous — as it did to my mother.’
Janet worked as a GP at the East Birmingham Hospital, now known as the Heartlands Hospital Trust, from 1984 to 1988. She recalled protective plastic sheeting being put up where ceiling tiles were being removed during refurbishment work.
‘There was a storm and that sheeting was blown down, leaving dust covering everywhere,’ says Richard. ‘This is where she is thought to have inhaled the asbestos.’
After a four-year legal battle, the Trust accepted liability and paid damages, which Janet’s family donated to the charity Mesothelioma UK, to fund a specialist nurse in the West Midlands.
Exposure to asbestos can cause other illnesses such as asbestosis, which is not cancerous but causes fatal hardening of the lungs — but mesothelioma is the biggest killer.
The mesothelium is a membrane that surrounds the heart, lungs and intestines. No one knows exactly how breathing in asbestos results in the disease, but it is thought fibres cause an inflammatory response that leads to the cancer.
The average timelag between exposure to asbestos and symptoms appearing is around 35 years —and half of all patients will die within a year of diagnosis.
There is no cure. Chemotherapy and immunotherapy can slow down the growth of the cancer, but to what extent varies. ‘I’ve had some patients who we’ve thrown everything at and they haven’t survived six months,’ says Nick Maskell, a chest consultant at North Bristol NHS Trust and a professor of respiratory medicine at Bristol University. ‘Yet others respond well to treatment and are stable five years after diagnosis.’
The diagnosis itself can be delayed as the symptoms are so common they can be attributed to other causes.
‘Common symptoms range from a non-productive cough, a dull chest pain and breathlessness on exertion,’ says Professor Maskell, ‘These are caused by a build-up of pleural fluid in the chest cavity, which can also result in pain.’
He says doctors may suspect a chest infection and prescribe antibiotics but, when that doesn’t work, the patient may be referred for X-ray, which reveals the fluid build-up on the lungs. A biopsy is needed to diagnose mesothelioma with certainty.
Liam Bradley, 35, a roofing inspector from Nottingham, received a quicker diagnosis than most after he fell from a roof seven years ago, breaking his neck, hip and ribs and puncturing a lung.
During a procedure on the lung a year later, doctors noticed white specks — a biopsy confirmed it was mesothelioma.
‘It was a massive shock to find out that this is going to kill me one day,’ says Liam. ‘Instantly me and my partner, Bryony, broke down in pieces. I have three children aged under seven. I couldn’t bear the thought of leaving them, of them growing up without a daddy.
‘But I’ve had chemotherapy and, at the moment, I’m fit and well. I’m determined to live every day to the full and to be there to see the children grow up.’
Liam believes he inhaled asbestos during a job in 2006.
‘I’d worked on a new-build but we’d had to join the roof to an older factory next door,’ he says.
‘When we stopped for lunch, the site manager asked us to wash our hands because there was evidence of asbestos. I remember feeling uneasy. We didn’t have dust masks or safety equipment. What worries me is the casual attitude people in construction work have to this. If they’re told to go up and rip something out, they often do it without checking the asbestos records of a building.
‘When I say: “No way, not without protective equipment”, they think I’m being over-cautious — until I tell them that I have terminal cancer caused by asbestos.
‘The Government says asbestos is safe while it is undisturbed, but all it takes is a bit of irresponsible renovation work and it’s exposed. About 70 per cent of the roofing work we do involves schools and, more often than not, there’s asbestos in or around them.’
Grace Carroll, 71, another mesothelioma patient, worked as a science teacher and assistant head in several schools in East London for 36 years. (This is not her real name, as she doesn’t want to burden her extended family and friends with the knowledge that she has terminal cancer.)
‘When I started working, they had raised the school leaving age to 16, so a lot of schools were quickly extended and there was a lot of asbestos in those buildings,’ she says. ‘All the pipes were lagged in asbestos. One thing I particularly remember is that the ceiling tiles had asbestos in them and they were always loose.
‘The kids used to love seeing who could jump the highest to dislodge them and, when the wind blew, they rattled and you could see the dust falling out of them. That dust would have contained asbestos.’
Grace says that she saw evidence of asbestos in all of the schools in which she worked.
‘People need to be made aware of how commonplace asbestos is and the Government needs to start removing it,’ she says.
No one knows exactly how much it would cost to remove the asbestos from public buildings in the UK and that is because there is no central database detailing where these buildings are.
One of the Work and Pensions Committee’s recommendations was to set one up but this was also rejected by the Government on grounds of the cost and effort involved. Liz Darlison, CEO of Mesothelioma UK, says this was a huge mistake. ‘Despite the UK banning asbestos in 1999, it is still present in many of our buildings and so the risk of exposure is with us every day. It only takes the inhalation of very low levels of asbestos fibre to be struck down years later with mesothelioma, a cruel cancer that is not survivable.
‘To take the deliberate decision not to record exactly where it is leaves the impression that the Government doesn’t want to know how bad this problem is.’
Mesothelioma UK is also critical of the way the Government treats victims. ‘There are two government schemes to compensate mesothelioma patients, so there is acknowledgment of them being victims of an industrial injury,’ says Liz Darlison. ‘Yet when it comes down to funds for research, mesothelioma is the poor relative compared with cancers such as bowel, breast and prostate.’
In June, the National Institute for Health and Care Excellence (NICE) approved two immunotherapy drugs — nivolumab and ipilimumab — which, when used together, had been proven in trials to extend life in some mesothelioma patients by several months, sometimes several years, with fewer side-effects than chemotherapy.
However, as the trials were conducted with patients who hadn’t first had chemotherapy, it was licensed only as a ‘first-line’ treatment, meaning patients who’ve had chemotherapy can’t have the immunotherapy treatment.
That rules it out for those like Helen Bone, 39, a nurse from Middlesbrough. She was diagnosed a year ago after experiencing abdominal pains. She is unsure where she inhaled the asbestos responsible for her cancer.
Helen has three daughters, aged 16, 13 and ten and she is desperate to see them grow up. At present, her cancer is stage 1, the lowest.
‘I started chemo in September last year and finished in January this year,’ she says. ‘My first scan showed the cancer was stable but a second scan showed growth.
‘I would like to try the dual immunotherapy treatment but I can’t because I’ve had chemo. This means that if you’re 80 and you get diagnosed with mesothelioma today, then you may have immunotherapy because you haven’t had chemo.
‘But I’m 39 and I can’t have it and that means that, even at 80, you might live longer than me. And that doesn’t seem fair.’
Helen is taking retirement on the grounds of ill health so she can spend more time with her daughters.
‘Mesothelioma is a cancer that can’t be cured, but it could be almost eradicated by getting rid of the asbestos that causes it,’ she says. ‘People need to be aware of the dangers and of the fact that the Government has decided to do nothing about it.’
A Government spokesperson said: ‘It is untrue to suggest that hospitals or schools are not safe to those who use them. While many NHS and school buildings are from a time when asbestos was widely used, asbestos is considered safe if it is undisturbed and managed properly. When work is carried out which would disturb asbestos, experts are brought in to safely dispose of it.
‘We are improving public infrastructure across the country, including building 40 new hospitals in England by 2030 and transforming buildings at 500 schools over the next decade.’
The Health and Safety Executive said: ‘The management of asbestos is a complex, sensitive issue and a key priority. Our focus has been on what the best available evidence tells us about exposure risk. We will act on any suggestions where there’s evidence that doing so would be beneficial.’
To Helen, that simply isn’t good enough. ‘I don’t know how long I have left to live,’ she says. ‘But while I have breath in my body, I won’t stop offering this simple message: We can’t simply leave asbestos where it is and hope for the best. We need a plan to get rid of it. And we need that plan now.’