Writing her story - women and mesothelioma

Yet, for the vast majority of cases, we still aren’t able to pinpoint the causes or places they picked their disease up. Safety Management investigates whether we need to write a new narrative on the dangers of asbestos, one that does not cut women out of the story.

The story of asbestos is a horrible and familiar one. Between 1950 and 1985 the use of asbestos was widespread, and as late as 1997, over 3,000 asbestos products were still on the market.

It has long been told how asbestos exposure has affected male workers during these times; the carpenters and plumbers and tradesmen who unwittingly handled the deadly insulating material, or the dockyard and railway workers who unloaded the cargo. Women mostly appear in the research on asbestos-related disease as ‘unexplained’ or ‘background’ cases, or in so far as they picked up the disease from the men. For example, women who washed their husbands’ work clothes containing asbestos fibres.

Yet, is this the whole story, and is it the only one we should be telling today? How does this story disempower women and female victims of the disease and what problems does it set up for women in the future?

Female deaths rising

One person who believes the story needs to change to protect vulnerable female workers still at risk of contracting asbestos-related disease is Lucie Stephens, whose mother died of cancer linked to asbestos in her job in a primary school. “I think mesothelioma has traditionally been seen as a mens’ disease and it’s true that more men continued to be diagnosed than women. But this fails to recognise that the numbers of women who are being exposed and diagnosed is growing,” she says. 

HSE’s most recent statistics on mesothelioma rates appear to confirm Lucie’s concerns. In 2015 there were 2,135 male deaths and 407 female deaths, similar to the annual numbers in among males and females in the previous three years. However, whereas for men the numbers are expected to decline, for women this is not the case. HSE’s Mesothelioma mortality in Great Britain 1968-2015 report says we can expect deaths to fall from 2020 in men, but “predictions suggest that the peak among females will occur later than in males – ie, well beyond 2020”.

With asbestos still in many of the buildings women work in, this is not surprising. It is likely that at least half a million commercial properties contain asbestos and around 75 per cent of all schools, according to The Asbestos Crisis, the 2015 paper written by the All Party Parliamentary Group on Occupational Safety and Health. Yet, are women being told the whole story of the risks and are they being protected in these workplaces?

Exposure question

Lucie says the danger is not just that asbestos is in schools and other public buildings, but that women aren’t being told of the risks, which perpetuates the ignorance. “Because many people are not even aware that asbestos is in their workplace, they are not in a position to identify where they were exposed. This means that these exposures become logged as ‘environmental exposure’ rather than increasing the awareness of the risks that schools, hospitals and local authority buildings can pose.”

Research has not done a good job so far of telling women’s stories of exposure, according to Aliyah Akram, barrister at 12 King’s Bench Walk, whose interest in the subject of women and mesothelioma was sparked after stumbling on a scientific finding. It found that one third of all mesotheliomas currently occurring in British women are genuinely ‘spontaneous’ cases unrelated to asbestos exposure. She says: “That seems unlikely. I’m not a scientist, but maybe it’s because we don’t [properly] look at the causes of mesothelioma in women.”

Redefining occupation

We tend to think of asbestos affecting certain male-dominated occupations, such as in construction, but although those in such trades are at a higher risk, in fact asbestos is everywhere in society, including the places where women work. However, in the first report of its kind, the 2009 report, Occupational, domestic and environmental mesothelioma risks in Britain – funded by Cancer Research UK and HSE – only one third of female mesothelioma cases could be traced to their work. For example, workplace exposure caused about 22% (110 deaths) of all female cases it analysed, mostly in medium-risk industrial jobs, particularly assembly line work.

When it came to explaining the causes of the remaining two thirds, it said, the increasing trend in female rates in Britain can be traced to sources which “may include release of asbestos from buildings due to normal occupation and weathering”.

Akram thinks that language like this is unhelpfully vague, but could be used more helpfully as the starting point to redefine categories. “I think this is almost the next question – once we get beyond occupational exposure, what’s next? Lots of buildings such as schools and government buildings contain lots of asbestos – asbestos insulation board and ceiling panels, often those kind of sectors are heavily female dominated, so it might be occupational but occupational in a very different sense.”

Clear information

It is important to establish the occupational link for a variety of reasons. Firstly, to spread awareness of the risks, as Lucie says, and also to control them. “I think most people are oblivious to asbestos, sadly sometimes until it is too late. We need a much clearer approach to showing where it is in our public buildings and be clear what the consequences of asbestos exposure can be,” says Lucie, who is spearheading a campaign to have asbestos removed from schools by 2028, but also is focused on the need to raise awareness of risks in the meantime. “When people work in environments that contain asbestos they need to be given clear information to help them to understand the potential risks and how to detect the early symptoms of mesothelioma,” she says.

The failure to tell the whole story of asbestos does not just prevent better risk management in our buildings where women (and men) work, but it also makes sufferers’ lives a lot harder.

From her experience of representing victims of asbestos in the courts Akram explains how hard it is for a woman to win a case against an employer for asbestos exposure.

She recalls the Sloper v Lloyds Bank case in 2016 in which Carole Sloper, a bank clerk, said she had been exposed to asbestos working for two Lloyds bank branches. Aged 54, she had contracted mesothelioma and said she’d got the disease from maintenance work involving ceiling tiles that contained asbestos in her workplaces. “She wasn’t working with it herself and the judge found she hadn’t proven her case. Those kind of exposures are very hard for a woman to prove on the balance of probability,” says Akram.

When it comes to claiming for funds as a mesothelioma sufferer, the difficulty to prove the occupational link becomes a further barrier. One of the questions in the Diffuse Mesothelioma Payment Scheme, set up in 2013 for people who have no recourse to insurance, is ‘Was your disease caused by exposure to asbestos during your employment?’

Equality has leaped forward in so many ways for women, and in many areas that involve work – from equal pay to discrimination laws. Yet, in the realm of asbestos-related disease, it appears that women are being disadvantaged, at the cost of their lives. While the government has admitted wrongs committed in the past, asbestos is a present risk today and must be faced up as such. “The greater scandal has been uncovered which is that a whole generation of working men have died from mesothelioma, it’s a horrible and painful death,” says Akram. “But there’s another level if you unpeel which is how women have been exposed. But people haven’t been asking the right questions up until now.”

These questions must be asked and addressed. The story of asbestos must be updated to reflect the realities of today.

Safety Management met Mavis Nye, a mesothelioma survivor and campaigner. Read her story and about the Mavis Nye Foundation set up to raise funds for treatment here