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The impact of asbestos on the UK workforce: three waves of mesothelioma

People, Place and Policy Annual Conference

12^th June 2024

Dr Bethany Taylor

Dr Peter Allmark, Prof Angela Tod.

Mesothelioma UK Research Centre

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Mesothelioma UK Research Centre

Funded by Mesothelioma UK
conduct a portfolio of robust and rigorous research with a reputation for excellence nationally and internationally
To improve the experiences of people affected by mesothelioma
https://www.sheffield.ac.uk/murc

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Two studies:

Mesothelioma Asbestos Guidelines Study (MAGS).

Healthcare staff with mesothelioma.

Mesothelioma and Education Workers Study (MEWS):

school-based education workers with mesothelioma.

Insights into the experiences of presentation, diagnosis, treatment and care
Indication of the incidence of mesothelioma amongst these two professions.

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Asbestos

Asbestos is a mineral resistant to high temperatures, valued for its use as a fire retardant and heat insulating material.

The UK has a history of exceptionally high asbestos use

Although asbestos was banned in the UK in 1999, many buildings built before this date still contain asbestos.

The UK’s number one cause of work-related deaths (UKATA, 2023).

It is a carcinogenic material

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Mesothelioma

An incurable cancer caused almost exclusively by exposure to asbestos
Rare. 2700 new cases each year UK.
The UK has the highest recorded rate of mesothelioma in the world
High symptom burden.
Unique information and support needs due to its aetiology, prognosis and associated financial and legal implications.

Mesothelioma is an incurable cancer caused almost exclusively by asbestos exposure. It primarily affects the lining of the lungs (pleural mesothelioma) but can affect the lining of the abdomen (peritoneal mesothelioma) and very rarely other areas of the body.

It is rare with approximately 2700 new cases each year.

While mesothelioma is a worldwide problem, the prolific usage of asbestos in the UK means it has the highest recorded rate of mesothelioma in the world

Mesothelioma is a devastating disease with a high symptom burden.

It’s a complicated diagnosis. Patients and their families have unique information and support needs. This is partly due to it’s cause. Symptoms can present 15-45 years after asbestos exposure and this lapse in time can be difficult to comprehend. The fact that it is preventable is incredibly difficult for people affected. Mesothelioma has a short prognosis with the majority of patients dying within 12 months of diagnosis.

Adding to this, there are financial and legal implications. Because mesothelioma is identified as an industrial disease, patients and their families may be entitled to compensation and when a patient dies, the death must be referred to a coroner for investigation, as a legal requirement.

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Three waves of mesothelioma

1^st wave: Workers mining asbestos, handing raw asbestos

2^nd wave: Workers handling products made with asbestos e.g. in construction, power stations, shipyards, railways

3^rd wave: Environmental exposure to asbestos in homes, workplaces and public buildings

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81% of UK primary and secondary state schools have asbestos “present on their estate”

94% of hospital trusts in England contain asbestos

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House of Commons Select Committee Report 2022

Risks to public health if nothing changes

Recommendations concerning future management of asbestos. These included

To develop a national asbestos register to ensure accurate records of asbestos in buildings
Gradual removal of asbestos over 40 years, prioritising buildings most at risk.

Current policy is to manage asbestos in situ.

The risk of asbestos is receiving increasing attention in the media and in politics. April 2022 saw the publication of a UK Parliamentary Work & Pensions Select Committee report into the Health and Safety Executive’s approach to asbestos management (HoC, 2022a). The report argued that the status quo was unacceptable and there was a risk to public health if nothing changed. They made several recommendations concerning the future management of asbestos, a number of which were accepted but these two here were rejected. 1) the development of a national asbestos register to ensure accurate records of asbestos in buildings and 2) gradual removal of asbestos over the following 40 years, prioritising buildings where people are most at risk, such as schools.

Currently policy is to manage asbestos in situ unless the asbestos becomes exposed and a danger to building users. Asbestos in public builds e.g. Schools and hospitals is managed in situ by the duty holder with an annual report.

To implement a national strategic plan
To improve occupational records on death certificates to monitor for asbestos related deaths
To review and improve microscopy techniques.
To review and share the evidence relating to routine, environmental, air monitoring of asbestos fibres.
To ensure HSE's current review of the Control of Asbestos Regulations includes a thorough assessment of moves towards more stringent asbestos occupational exposure limits in Europe, carefully considering their application to the GB context.

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Research studies carried out over several decades all agree that the sort of invasive and destructive work associated with removing asbestos gives rise to the greatest release of asbestos fibres and the greatest risk of exposure. As such, the Government could only advocate more proactive removal of asbestos from buildings if there is compelling evidence that the increase in exposure for workers removing asbestos is justified in terms of reduced risk to building users. At present, the evidence is not there.

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Bottom line – according to ONS data 2000-21

ONS data

Doesn’t cover other staff in schools/ hospitals (e.g. maintenance, administrative, auxiliary)
Only covers death up to age 75
Only covers the last employment

The data for 2011-2021 shows that teaching is now the highest ranked occupation for mesothelioma risk for females

According to this ONS data, …

There are however serious concerns about this data and these figures therefore being a severe underestimate of the risk of asbestos in these occupations.

The latest National Mesothelioma Audit showed that 56% of people diagnosed with mesothelioma were over the age of 75.

Even based on the ONS data, teaching is ranked as the highest ranking occupation for mesothelioma risk for females. This is not because females are more at risk than males but because females are not typically represented in the known high risk occupations such as mining and construction which are highly ranked for males.

MURC has found that the ONS data misses a large number of former and current hospital workers. Based on FOIs to the DWP and to NHS resolution the Centre has found some of the missing people.

9 mins

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Columns E and G in the yellow/ beige give the ONS data – death rates 2000-2021

Columns C and D in the orange give the NHS Resolution data. We submitted a FOI asking how many claims they have received from former workers who developed mesothelioma - column C is 2013-19; column D is 2014-22

Number of claims per annum is 41 or 39. This is much higher than the figure given by the ONS data. This remains an underestimate because this only represents those who pursued a claim and this is difficult to do with health care workers compared to a high risk industry. There is a reluctance amongst law firms to take on a case with less than a 50% chance of winning. So figures are on the low side but nevertheless are a great deal higher than the ONS data.

There is no single body to ask about claims made by education workers as there is the NHS Resolution – would have to be through every education authority or employer.

We then submitted FOIs to the DWP. Most people who develop mesothelioma will put in an Industrial Injuries Disablement Benefit claim (if they have time before death). IIDB picks up most people who develop meso – still miss some.

Columns F and H in the pink give the Industrial Injuries Disablement Benefit claims over 5 years – 2017-22

The categories that the IIDB use meant that we had to do some playing around with the data for Health care workers. This led us to believe that approximately 68% of people in these categories work within the NHS. This 68% gives a 65.28 per annum. Almost a factor of 10 greater than the ONS data.

Looking at IIDB claims in the categories of primary education and secondary education – these categories will capture some people who work in education but are not teachers e.g. cleaners or administrative workers who work in the education industry for example.

So when the government responded to the recommendations on the basis of the ONS data, we can show that this data is a drastic under-estimation.

SOC – Standard occupational categories

Standard industrial classification of economic activities (SIC)

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The school environment

“Frighteningly, the disturbance was what could be described as natural 'wear and tear' – pupils disturbing it with bags, rulers etc.”

“A boy had made a hole in the wall at one time and pupils would kick at the walls. There were holes in the corridor walls.”

“[She] was exposed to asbestos several times. Asbestos insulation ceiling tiles had been taken down and stacked in a busy corridor while electricians worked on cables…Bullies took children’s satchels and blazers and hid them in the ceiling tiles. And there had been vandalism in the girl’s toilets, where asbestos ceiling tiles were also stacked.”

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291 failures of asbestos management in schools resulting in release of asbestos fibres

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ATaC and NORAC survey report

Inspected 128,761 buildings with asbestos

Found 710,433 items of asbestos

71% of these asbestos items had some level of damage

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How does this impact patients today?

Low index of suspicion

Distress and shock at diagnosis

Concern for others and the ongoing risk

Inequalities in accessing compensation

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Low index of suspicion

Typical mesothelioma patients have worked in an industry associated with asbestos exposure e.g. mechanic, shop fitter, railway maintenance etc

Generally, these industries are dominated by men, meaning women tend to be viewed with a lower index of suspicion

Perceived delays in diagnosis

There can be immediate suspicion of mesothelioma when a person who presents with symptoms typical of mesothelioma has worked in an industry associated with asbestos exposure such as mechanic, shop fitter, railway maintenance.

People who have worked in industries not traditionally associated with asbestos exposure, such as hospitals or schools, are less likely to trigger timely suspicion.

Similarly, as the industries known to be associated with asbestos exposure are dominated by men, women generally may be viewed by services with a lower index of suspicion. While there remains a need for statistical research to explore this index of suspicion further, qualitative data does suggest that this is the case.

Such low index of suspicion led to perceived delays in diagnosis for people whose work history is not typically associated with asbestos exposure, and particularly women.

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Low index of suspicion

‘They started asking me whether I’ve been exposed to asbestos and I was thinking no I don’t think so. I did you know and the chest surgeon … you know he didn’t, couldn’t believe a teacher would have it because I wasn’t in any of the industries known for this disease.’ Source: YouTube Rosie Peters, patient, teacher (MEWS)

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Distress and shock at diagnosis

‘You always think labourers get mesothelioma because they work so closely with these substances, but to be in a classroom day-in day-out with young children, it came as such a shock to us.’ Source: Freddie Davis, Husband of Pearl Davis, a teacher who died of mesothelioma patient (MEWS)

‘I think personally now, it’s ironic, that I’ve dedicated 44 years of my life, and you know, that dedication is what’s killing me now. It’s ironic really.’ Source: Interview with health professional and patient (MAGS)

Additional psychological and emotional support needs.

Additional time to understand diagnosis.

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Concern for others and the ongoing risk

'Mum was incredibly angry when she got her diagnosis as she was working in a school with asbestos. She worked …in primary schools with five-year-olds in reception. She hadn’t been able to protect them. Although Mum is now in the last weeks of her life, she is horrified that teachers and pupils continue to be exposed to asbestos in schools.’

Source: Lucie Stephens, daughter of Sue Stephens a patient and teacher (MEWS)

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Inequalities in accessing compensation

Mesothelioma is considered an industrial disease
Compensation is available to those who were exposed due to their employer’s negligence following the asbestos ban.
Support families facing a loss of earnings
Support access to non-NHS funded treatments to lengthen their lives.

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Inequalities in accessing compensation

Patients exposed to asbestos in an occupation not recognised as high risk are less likely to have a successful compensation claim.
More difficult to find specific cases of exposure that were due to employer negligence when the client is a teacher/ health care professional
Reluctance to take cases on where there is less than 50% chance of winning.
This generates an inequality between patients exposed in a high-risk industry and those exposed in an environment not yet recognised to be high risk.

Consultation with legal professional stakeholders during both the MEWS and MAGS suggested that patients exposed to asbestos in an occupation not recognised as high risk are less likely to have a successful compensation claim.

A lawyer usually has little problem in finding likely points of exposure for a client who has mesothelioma and worked in a known high-risk industry. More difficult to find specific cases of exposure that were due to employer negligence when the client is a teacher/ health care professional and it is likely that the employer will contest the case.

There is a reluctance to take cases on where there is less than 50% chance of winning.

This generates an inequality between patients exposed in a high-risk industry and those exposed in an environment not yet recognised to be high risk, such as in a school or hospital.

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Can we afford to get rid of asbestos from public buildings?

In November 2023, a cost-benefit report was published by Mesothelioma UK in partnership with stakeholders. The report estimated that in 2023 the total cost to the UK economy of asbestos-related diseases among former school and hospital workers was over £1.3 billion.

Considering asbestos removal costs only, the benefits of removing asbestos from schools and hospitals over a 10-year period – approximately 30 times faster than the current speed of progress would be 4.1 billion, outweighing the cost by a factor of three. This equates to a £3million saving for every £1million spent on removal.

If the building is what is called a system-built building, then the fabric of the building is made of an asbestos product and therefore asbestos is too integral to the structure of the building to be removed by any other means. In these cases, demolition, rather than removal, is required. Cases where demolition in required are more expensive, reducing the cost benefit ratio to 0.85. This means that for every £1 million spent, the economy saves £850,000. The net cost to the Government over 10 years remains relatively small at £2 billion over 10 years. In addition, much of this rebuilding would have to take place in the near future anyway due to the poor condition of UK schools.

NOTE that pupils not included in benefits side and this analysis is based on a 10 year removal period. The recommendation put to the government was 40.

There is now, therefore, a clear cost-benefit argument to removing asbestos from schools and hospitals.

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Take home messages

Asbestos remains a risk to public health
Policy decisions are being made based on data that underestimates the risk of asbestos
People diagnosed with mesothelioma following exposure in non-traditional environments such as schools and hospitals may face inequalities in access to care and support.

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Thank you

https://theconversation.com/the-hidden-danger-of-asbestos-in-uk-schools-i-dont-think-they-realise-how-much-risk-it-poses-to-students-203582