Annabel Freyberg, the Oxford-educated daughter of an hereditary peer, doesn’t fit the typical picture of a mesothelioma victim.
The industrial disease is associated with dockyard and construction workers and is caused when needle-sharp asbestos fibres from building materials become embedded in the lungs.
But Annabel, who died two-and-a-half years ago, is one of a growing number of unlikely victims succumbing to this aggressive cancer.
Britain was the world’s biggest asbestos user — as an insulator and fire retardant — and has the highest incidence of mesothelioma.
And although the import and sale of some forms of asbestos was banned as long ago as 1985 (it wasn’t until 1999 that all forms were banned, though builders were allowed to use stockpiles), mesothelioma can take up to 40 years to develop.
In susceptible people, just one microscopic asbestos particle can trigger the slow development of the deadly cancer.
Asbestos is thought to be in virtually all schools constructed between 1950 and 2000 — and in a variety of other buildings.
In the UK, 40,000 people have died from the disease, including teachers and those exposed as schoolchildren, according to campaign group Asbestos In Schools.
A further 60,000 to 70,000 have unknowingly been affected, says Professor Sir Anthony Newman Taylor, director of research and development at the National Heart and Lung Institute.
‘There has been a huge drop in exposure to asbestos since the Eighties, but this is a legacy disease,’ he explains. ‘More than half the cases are still to come.
‘There are around 3,000 new cases a year, people die within a year of diagnosis and there is no effective treatment.’
The death rate is continuing to rise by ten per cent every year and it’s estimated there will be a further 60,000 deaths from this disease over the next 30 years.
‘If we are to develop treatments, we need a much bigger research effort to find the gene mutations that cause a tumour to form,’ says Professor Newman Taylor.
‘At the moment, we don’t even know if the variation in susceptibility is inherited or just chance.’
The experience of Annabel, 52, a popular and well-known writer and journalist, was particularly tragic.
Her nine-year-old daughter, Blossom, was already losing a five-year battle against neuroblastoma, an entirely unrelated nerve cell cancer, when Annabel developed what appeared to be a chronic chest infection — subsequently diagnosed as mesothelioma.
She died in December 2013, little more than 19 months after her daughter’s death — leaving her husband, the author Andrew Barrow, to care for their other child, Otto, then 12.
‘We think about her all the time but I don’t want to dwell on the sadness,’ says Andrew.
‘She wouldn’t have wanted us to be downcast.’
Annabel’s brother, Valerian, has taken up the issue of Britain’s mesothelioma plague, joining a campaign to raise funds for research into the disease which kills as many people as skin cancer, and yet attracts a fraction of the funding.
‘This is a terrible condition,’ says Lord Freyberg. ‘The number of deaths is increasing, people are more aware than they were a few decades ago, but there’s a long way to go.
‘Annabel became ill six months before she was diagnosed, but she just assumed it was stress.
‘It was only about two weeks after Blossom died that she actually went to the doctor.
‘Antibiotics did nothing so she was sent for more tests and had a biopsy about four weeks later.’
Annabel had chemotherapy with cisplatin — but it proved so toxic it left her dramatically weakened.
‘It is very hard to gauge where the disease could have come from,’ says Lord Freyberg. ‘It could have been repair work at her school [that released asbestos dust], but I honestly don’t know.’
Annabel boarded at Marlborough College, like the Duchess of Cambridge.
The school issued a statement saying it acts ‘in accordance with the 2012 Control of Asbestos at Work Regulations’ — broadly meaning that asbestos in its buildings must be encapsulated and regularly inspected to ensure fibres are not leaking.
Lord Freyberg is one of a surprising number of Westminster figures touched by the disease.
Lord Giddens, emeritus professor of sociology at the London School of Economics, has revealed his wife died from it; former MP Lord McNally’s sister died after washing her husband’s asbestos-contaminated work overalls; and John Glen, MP for Salisbury, says his father has the disease.
Lord Alton, the former MP for Liverpool Mossley Hill, observed repeated mesothelioma deaths among the shipyard workers of Merseyside and is now campaigning for more research, and for the insurance industry to provide more funds for a compensation scheme.
‘There’s a mistaken belief this is a “legacy” disease of heavy industry,’ he says. ‘It isn’t, it affects people from unpredictable backgrounds. The rate of deaths is continuing to rise. We need more research.’
His efforts have had some recent success. In March, George Osborne announced that £5 million from the fines imposed on banks for the interest rate-rigging scandal will go to mesothelioma research.
The move has been welcomed by Bill Cookson, a professor of genetic medicine at Imperial College London, who is working with Professor Newman Taylor on identifying the pathways of the cancer.
‘We know it’s possible to find a treatment because we have succeeded with leukaemia which was also once always fatal,’ he told Good Health.
A potential new treatment was announced last week by U.S. researchers who have tested a vaccine on 38 patients and reported that 86 per cent had significant shrinkage of their tumours.
For David Staley, who lives with his wife, Alison, in Manchester, a breakthrough is crucial.
David, 40, a specialist risk manager with Barclays and father of two, had been fit and healthy all his life until late 2014, when he suddenly became weak and tired after developing ‘flu’.
After repeated investigations, he was diagnosed with mesothelioma last October and was left reeling.
‘I have done office jobs all my life,’ he says. ‘I may have breathed in one random asbestos fibre at school, or it may have been when I had a holiday job as a gas meter reader. The meters were mounted on asbestos boards.’
He had his entire left lung removed last November, and has had four cycles of treatment with cisplatin and Pemetrexed to destroy any tumours elsewhere.
‘I know average life expectancy after diagnosis is 12 months, but I can’t be one of those statistics. Most of the diagnoses are in people over 65. In my favour is that I was diagnosed at a young age.’
The link between mesothelioma and asbestos in schools is particularly worrying because, as the Government’s committee on carcinogenicity has warned, young lungs are more vulnerable: three to four pupils die for each teacher affected, it says.
The youngest victim, Sophie Ellis from Stowmarket, Suffolk, was just 18 when she died in 2010.
‘From the beginning, the diagnosis was terminal,’ says her father, Andrew. ‘We never found out where it came from, but there is no question that something needs to be done about asbestos in schools.’
Suffolk County Council, which runs the three schools attended by Sophie, has said there’s no evidence she contracted mesothelioma at school, and that staff are instructed to check for leaking asbestos.
Between 1980 and 2013, 308 teachers died from mesothelioma, says the National Union of Teachers (NUT), with the number rising sharply from three a year in 1980 to 19 a year today.
The union says about nine in ten schools contain asbestos, but a survey found fewer than half of teachers and 20 per cent of parents were aware of it and the risks.
In March 2015, the Government published a long-delayed review into asbestos in schools.
It proposed a series of measures, including a programme of air sampling from the start of this year.
‘None of it has happened,’ says Christine Blower, the NUT’s general secretary.
‘We didn’t feel the recommendations in the report went far enough and now it seems the Government is dragging its feet on the limited action proposed.’
The Department for Education says it will spend £23 billion on school buildings by 2021 and intends to implement the recommendations of the review ‘in full’.
The Health and Safety Executive says it’s down to education authorities and school governors to ensure asbestos in buildings is safe.
Michael Lees, from Holsworthy, Devon, founded the Asbestos In Schools campaign after his wife, Gina, 51, an art teacher, became one of the first teachers known to have died from mesothelioma.
‘Although only a minority are susceptible, we don’t know who they are,’ he says.
‘People are often completely unaware of the risks of sticking drawing pins into walls, slamming doors or dislodging ceiling tiles — but these things can release fibres and cause disease.’
Some institutions are taking the risk seriously.
Eton College has now removed or encapsulated asbestos, as have the royal palaces, a process which some suggest may have led to the death from mesothelioma in 2009 of Alastair Aird, equerry to the Queen Mother.
As Professor Julian Peto, an expert on cancer epidemics at the London School of Hygiene and Tropical Medicine, told a conference on the topic in May: ‘The problem is, by trying to get rid of asbestos you may do more harm than good by raising the dust.’