Mesothelioma: are nurses being put at risk in the workplace?

The cancer, caused by asbestos, could affect more staff than statistics suggest, say our expert authors

• Office for National Statistics analysis concludes that hospitals have little or no evidence of increased mesothelioma risk compared with the general population – but this does not tally with the experience of many specialists
• Data show that at least 81% of organisations running hospitals in the UK have sites containing asbestos
• Analysis highlights good technical care of healthcare workers experiencing mesothelioma, but emotional care sometimes falls short, especially when carers are engaging with colleagues

Malignant mesothelioma is an aggressive, rare cancer caused by exposure to, and inhalation of, asbestos, a fibre-like material once widely used in the building sector.

The cancer is associated with traditionally male-dominated industries that use asbestos, including asbestos mining and disposal, and the construction industry.

Analysis finds mesothelioma rare in healthcare workers

Although the UK has the highest rates of mesothelioma in the world, the Office for National Statistics (ONS) recorded only 177 mesothelioma deaths in the category of health and social welfare professionals between 2002-15.

ONS analysis concluded that non-industrial workplaces, such as hospitals, had little or no evidence of increased risk compared with the general population.

Nurses say incidence of mesothelioma higher than research suggests

This analysis, however, does not tally with the experience of many mesothelioma nurse specialists, or with that of others who work in the area, such as the charity Mesothelioma UK or legal professionals.

These experts report seeing far greater numbers than the official statistics suggest.

• RELATED: Asbestos: some nurses face elevated mesothelioma risk through sustained exposure

Some healthcare professionals have publicly reported their experiences of developing the illness.

In some cases, they have reported difficulties in getting a diagnosis because mesothelioma is believed to be so rare in healthcare workers.

For this reason, Mesothelioma UK commissioned the University of Sheffield to complete a study to find out what the experience of presentation, diagnosis, treatment and care was like for healthcare professionals and other NHS workers.

The full study report was published at the end of September 2020.

Are nurses and other healthcare workers at risk from asbestos?

Data show that at least 81% of organisations running hospitals in the UK have sites containing asbestos.

Following a BBC freedom of information request to 243 NHS trusts or health boards, 198 out of the 211 (94%) organisations that responded said their hospitals contained asbestos.

Blue or brown asbestos is often removed from buildings as it is considered high risk.

White asbestos is considered lower risk and is generally left in situ and monitored in case it is visibly damaged.

However, it is not the visible material in white asbestos that poses risks but the invisible fibres that are released from it.

Improved air monitoring might be more effective in picking up such fibres, particularly as damage is not always easy to detect when asbestos is hidden behind walls or floors.

How many nurses develop mesothelioma?

Because mesothelioma is such an aggressive disease, the time from diagnosis to death is usually fairly short – most people who develop the cancer die because of it.

According to the ONS data, 114 of the 177 deaths of healthcare professionals between 2002-15 were among nurses.

Because of concerns from mesothelioma nurse specialists, charities and legal professionals about the likely underestimates in these figures, we tried to get a more accurate picture.

We asked NHS Resolution how many healthcare workers had sued the NHS, claiming they had developed mesothelioma after being negligently exposed to asbestos at work.

Between 2004-19, there were 1,229 such claims, according to data provided under freedom of information laws.

All of these were NHS workers who had developed mesothelioma, although only about half of this group had won their claim against the health service by showing it was due to negligent exposure at work.

• RELATED: Family of nurse who died appeals to former colleagues for asbestos information

Unfortunately, NHS Resolution would not provide a breakdown of the figures by job or profession.

Even going by claims, this higher figure underestimates the true extent of mesothelioma among current and former NHS staff as it only includes those who actually made a claim against the health service.

Many who develop mesothelioma will not make a claim because, for example, their legal team is unable to identify a specific incidence of negligent exposure to asbestos.

Many nurses have careers ranging across many sites and this makes tracing difficult.

It is therefore impossible to say how many nurses develop mesothelioma.

Literature review sheds more light on experience of mesothelioma

We can, however, say with some certainty that the ONS figures are too low.

The 1,229 claims are likely to include those made by NHS non-clinical staff, but it is also likely that nurses make up a large proportion of the figures. So, these figures underestimate the actual figure of NHS staff who develop mesothelioma but by how much, we do not know.

In 2019 we reviewed the literature relating to professionals’ experience of developing mesothelioma, including published academic papers, blogs, YouTube broadcasts and other online information.

Seven former healthcare workers who had developed mesothelioma – including nurses, healthcare assistants and doctors or their partners – also shared their experiences with us.

Symptoms and diagnosis of mesothelioma

Our interviewees reported many physical symptoms that were similar to those of other patients with mesothelioma, such as pain, nausea and breathlessness.

They also reported strong emotional reactions; for some, this was exacerbated by knowledge of the condition and its poor prognosis.

In other cases, knowledge of the link to asbestos left some puzzled about the provenance of their cancer.

One healthcare assistant told us: ‘I kept thinking, well where could I have had it from, you know?’

Diagnoses were sometimes associated with an attempt to locate potential asbestos exposure outside the workplace on the part of the diagnosing clinician.

• RELATED: Quality care for people with mesothelioma during the COVID-19 pandemic and beyond

One nurse diagnosed with mesothelioma described a conversation with her consultant in which she was questioned about where her parents worked and her living situation to determine a link with asbestos.

She told the doctor there was no link.

‘I said, no, we’ve never had any asbestos in any houses that we’ve lived in,’ she says.

Some healthcare professionals felt a sense of anger or disappointment that they had been exposed to the risk in their workplace, in an environment that is supposed to be about healthcare.

One nurse says: ‘I’ve dedicated 44 years of my life and, you know, that dedication is what’s killing me now. It’s ironic.’

Treatment and care for healthcare workers experiencing mesothelioma

The data we reviewed suggested that, in general, technical care was good but sometimes emotional care fell short.

One issue highlighted was the way in which healthcare professionals sometimes treat patients who are also their colleagues.

Patients have reported a lack of empathy, compassion and understanding from colleagues, who often seem evasive or unsure how to treat them.

This phenomenon has been widely acknowledged in academic literature and was also raised by our interviewees.

‘A mesothelioma diagnosis does not imply that there is ‘nothing that can be done’ to help the patient. There is often much that can be done’

Sometimes healthcare professionals with mesothelioma report being treated more like colleagues than patients, despite the devastating diagnosis.

One nurse described how receiving her diagnosis from a colleague was ‘horrendous’ because of a perceived lack of compassion.

Another nurse said she was shell-shocked by the news but found the response from her nurse lacked empathy.

‘She just said I’m so sorry about your diagnosis – take these and if you do nothing else then ring this number,’ she said.

‘And that was it. I walked out. I thought, I’ve just been told I’ve got a terminal illness, and all I’ve got is a bunch of leaflets.’

On the other hand, there were many reports of positive treatment and the 26 clinical nurse specialists working across the UK from the charity Mesothelioma UK were highly regarded by interviewees.

Recommendations from the report

Our report makes a number of recommendations regarding the management of asbestos.

At present, the UK relies on specifications set in 1969, when Asbestos Regulations came into force.

We recommend the UK improves the monitoring of levels of asbestos using techniques that are now widely available and used in other countries.

Furthermore, we suggest that the healthcare workforce should be taught about asbestos, its dangers and its management, perhaps at induction and update days.

We also propose that, when leaving the health service, staff should be reminded that asbestos exists in most NHS premises and that asbestos-related illness is a possibility that should be borne in mind if the symptoms are present.

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Further information

• Healthcare Staff Mesothelioma Asbestos Guidance Study (MAGS)

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Peter Allmark is research associate at the division of nursing and midwifery at the University of Sheffield

Angela Tod is professor of older people and care at the division of nursing and midwifery at the University of Sheffield

Liz Darlison (@darloliz) is consultant nurse at University Hospitals of Leicester NHS Trust