Britain is facing an avalanche of asbestos-related deaths. For decades, the official policy of successive governments has been to leave asbestos where it is, provided it is sealed in, painted over or not degraded so that it’s shedding fibres.
However, many hospitals, schools and other public buildings are now so old and crumbling that campaigners argue this policy should be abandoned.
The danger is mesothelioma, a cancer that develops in the mesothelium, the membrane that covers the lungs, abdomen and heart.
The cancer is caused by inhaling tiny fibres of asbestos. There is no cure, and treatments such as chemotherapy and immunotherapy can only slow down its growth. Once diagnosed, most patients die within 18 months.
Asbestos was widely used in the UK in public and domestic buildings as a form of insulation and a fire retardant for decades – found in everything from ceiling tiles to toasters, corrugated roofing and ironing boards, before finally being banned in 1999.
As a result of its widespread use, the UK now has the highest mesothelioma mortality rate in the world. And the tide of people being diagnosed with the disease is growing.
It can take 20 to 60 years between exposure and developing symptoms – such as abdominal and chest pains, coughing and breathlessness – and the fear is that many people are living with a ticking time bomb inside them.
The Mail has now joined campaigners in demanding government action to ensure that public buildings – including more than 21,000 schools – have all remaining asbestos removed, and to set up a national online database listing every non-domestic building in the country that contains it.
Asbestos was widely used in the UK in public and domestic buildings as a form of insulation and a fire retardant for decades before finally being banned in 1999
People continue to be diagnosed with mesothelioma. While some have worked with asbestos, many of those affected have not, and had no reason to suspect they might have inhaled the deadly fibres. The impact of this disease is reflected here in the stories of these ten brave people…
From bunsen burner mats at school?
Mark Smith, 36, a transport manager, lives in Bradford with partner, Hayley, 34, who works in accounts, and their children, aged nine and seven. He says:
With two young children, I should be in the prime of life. But I’m so weak and breathless that, when we went on a pre-Christmas outing to our local stately home I had to hire a mobility scooter.
Just months prior I was playing rugby and taking part in charity cycle rides.
Last August I started losing my appetite. I then developed a stabbing pain in my stomach. I thought it was a hernia.
Mark Smith, 36, has started a two-year course of immunotherapy which he hopes will delay his cancer growing
My GP sent me to A&E where doctors drained nine litres of fluid from my stomach. They told me they suspected I had cancer – after doing a biopsy they diagnosed peritoneal mesothelioma – mesothelioma in the abdominal lining.
To make things worse, the doctor mistakenly said it was treatable and I could expect to live a long life. A few days later, a second doctor revealed the devastating truth: I have, at best, 18 months to live. We are still reeling.
I’ve started a two-year course of immunotherapy which, I hope, will delay the cancer growing.
I am still producing up to two litres of fluid every day as an effect of the cancer, but have been fitted with a permanent drain.
Despite all this I still manage to work as my job isn’t too physically taxing. When I tell people I have cancer caused by asbestos, they’re shocked. I’m so young and have never worked with asbestos.
Solicitors are tracing my education and work history: one theory is that asbestos was in the ceiling tiles in my school or in the mats we used with bunsen burners in science lessons.
Hayley and I are trying to protect the children from all this: all they know is I’m poorly and that doctors give me medicine to reduce the fluid in my stomach.
Contracted it as a 16-year-old receptionist
Michelle Spencer, 63, a retired teacher, lives in Rochdale with her husband, Nigel, 58, who works in logistics. She has two children and six grandchildren. She says:
I’m dying because of where I worked and it makes me so angry.
I believe I came into contact with asbestos in 1976, when I was 16 and worked as a receptionist at a local carpet mill. I had to take messages to a room where maintenance staff were working on the asbestos insulation on pipework.
I was only at the company for 18 months, but it seems to have signed my death warrant.
Michelle Spencer, 63, believes she came into contact with asbestos in 1976, when she was 16 and worked as a receptionist at a local carpet mill
When I developed a dry cough in 2021, my GP suspected long Covid – but after a CT scan a week later (which showed a shadow on my left lung) and a biopsy, I was told it was mesothelioma.
Initially I felt relieved because it sounded better than lung cancer. But then the doctor gently pointed out that it was incurable.
Nigel and I went to pieces. I loved my job as a catering teacher at Buckley Hall Prison but by then I felt too weak to continue. Leaving broke my heart.
The prisoners even paid for me and Nigel to go on a spa break. I still get cards from them.
I’ve had chemotherapy and immunotherapy which have kept the cancer at bay. But I’m running out of options and time.
Through my solicitors, Irwin Mitchell, I received compensation from the insurers of the company that owns the mill. It’s allowed us to make memories. In September Nigel and I celebrated our 25th wedding anniversary in Sri Lanka. We hope to take the entire family to Disneyland Paris this year.
I try to feel positive that I can do these things before I go.
Accountant in tower block with asbestos
Alan Smith, 80, former managing director of Anglian Water, lives in Melton Mowbray with wife, Deb, 65, a retired retail trainer. He has two children and three grandchildren. He says:
I’ve never worked with asbestos or knowingly been anywhere near it. Though I probably came in contact with it in around 1972 when I spent two years as an accountant in a 16-storey tower block in Ipswich. The building was demolished in 2008 because it was riddled with asbestos.
Alan Smith, 80, says so far his cancer is stable and he is fit enough to walk up to five miles a day
Or it could have happened when I attended meetings in the offices of Wisbech and District Water Board where asbestos has also been found – I remember loud building work going on behind a partition.
One lungful of asbestos dust is enough to give you cancer, but I didn’t realise how vulnerable I was. When I started suffering breathlessness in July 2023, as an ex-smoker I assumed it was lung cancer. I was shocked when I was diagnosed with mesothelioma.
As my cancer is slow-growing, doctors don’t recommend treatment. So far the cancer is stable and I’m fit enough to walk up to five miles a day. I have had a good life and am determined to stay as active and positive as I can.
Once lived in a very old building
Karen Cansanay, 44, a full-time mother, lives in Cheltenham with husband, Alvin, 47, a business consultant. They have four children aged from five to 22. She says:
I woke up from an operation to remove a suspected gallstone to learn that the lump in my stomach was actually cancer – peritoneal mesothelioma.
That was last July and I have, at best, two years to live. I’m still in shock – it seems like a nightmare.
Karen Cansanay, 44, can’t pinpoint how she came in contact with asbestos although she says she did once live in a very old building
My little boy, Elijah, is five. He only knows that his mummy has a pain in her stomach. My older children (aged 22, 18 and 17) know the truth and are heartbroken.
It’s all happened so fast. I started feeling breathless last January. My hands also felt numb. When I began to feel bloated, my GP ordered a full MRI scan which revealed a lump in my stomach. After the diagnosis I started a course of immunotherapy, which I hope will prolong my life.
I can’t pinpoint how I came in contact with asbestos although I did once live in a very old building and I’ve since learnt it’s in so many old buildings. All I can do is try to enjoy every day and build as many memories for my children as I possibly can.
As student had job cleaning in schools
Susanna Illingworth, 38, a compliance officer, lives in Oxford. She says:
When I started suffering from a bloated stomach and other gut symptoms, and pain under my rib cage, my GP suggested a number of possibilities including muscle strain, endometriosis or a gluten intolerance. It was only when I started fertility treatment in August 2023 that I discovered I have mesothelioma.
I’ve always wanted children and, as I don’t have a partner, in August 2023 I decided to go to a private fertility clinic.
The consultant started by scanning me. When he saw fluid around my ovaries, he urged me to have an MRI scan on the NHS before fertility treatment. I felt so fit, I never suspected cancer.
Two months later I had the scan. That’s when the nightmare began, as it showed nodules on my ovaries. Doctors thought it was ovarian cancer. I was petrified when the surgeon told me they feared it was stage 4 and incurable. Thank heavens my sister (I’m one of four girls) was there with me.
Susanna Illingworth, 38, is working with solicitors who are trying to trace where she came in contact with asbestos
Reeling, I was transferred to the Royal Marsden Hospital a few days later. It was only last January that a battery of further tests showed I had peritoneal mesothelioma. My grandfather, an admiral, died of mesothelioma aged 69, soon after I was born, so I knew what it meant.
In August – after six sessions of chemotherapy – I had a 12-hour operation at the Hampshire Clinic in Basingstoke to remove my ovaries, fallopian tubes, womb, spleen, appendix and the lining of my stomach. The surgeon then filled the cavity with heated chemotherapy drugs to kill any remaining cancer cells.
I feel immensely lucky that I seem to have responded well to treatment but I feel immeasurably sad I can never be a mother.
I’ve had terrific support from HASAG, an asbestos disease support group based in Southampton, and from Mesothelioma UK, which funds a peritoneal mesothelioma cancer nurse specialist.
I’m also working with solicitors who are trying to trace where I came in contact with asbestos. Theories include my primary school – and as a teenager I also worked as a cleaner at various schools which may well also have contained asbestos.
As apprentice, saw it glistening in sun
Steve Elford, 73, a retired electrical engineer, lives in Wisbech, Cambs, with his wife, Lori, 64, a retired nurse. They have five daughters, 13 grandchildren and three great- grandchildren. He says:
When I was diagnosed with mesothelioma in May, the bottom fell out of my world.
Lori [his second wife] and I only got married in 2013 and we still had so many plans. We’d recently bought a home in Cyprus and intended to spend half the year in the sunshine. Until my diagnosis – after I developed a persistent cough early last year – I was fit as a fiddle and felt invincible.
Steve Elford, 73, was diagnosed with mesothelioma in May and first worked with asbestos in a foundry which he joined as a 16-year-old apprentice
I first worked with asbestos in a foundry which I joined as a 16-year-old apprentice. I remember seeing asbestos fibres glistening in the sunshine and thinking it was innocuous. So I was blindsided when I was told that I had mesothelioma in my right lung and it was incurable. The irony is that I have always been virulently opposed to smoking because I know the dangers of lung cancer.
I was offered immunotherapy and promised it could buy me up to three years. Sadly, in October, scans showed the treatment wasn’t working. The cancer is too far spread. I am now receiving palliative care only.
We’ve been blasé about the dangers of asbestos for far too long. As I know to my cost, it is a killer.
How did middle-aged mum get it?
Lisa Black, 54, an admin assistant, lives in Sevenoaks, Kent with husband, Russell, 59, an IT developer. They have a daughter, 25, and a son, 23. She says:
I was diagnosed with mesothelioma last May. I’m still in shock and very angry. I’ve always looked after myself – eaten well and taken plenty of exercise and never been ill apart from the odd cold.
But this evil substance somehow got inside me – I still don’t know how – and it’s killing me. The irony is I expected to live a long, healthy life; my nan died at 102.
Last February I started struggling to breathe and was so ill I was admitted to hospital – the doctors thought it was pneumonia and even when a second X-ray showed fluid on my lungs, no one suspected the truth.
Lisa Black, 54, says being told she was terminally ill was shattering and she has never felt more alone or terrified
Mesothelioma is so misunderstood, doctors weren’t looking for it in a healthy, middle-aged mum.
It took several CT scans and a biopsy before they realised. Then they kept asking me: ‘Have you ever worked with asbestos? Have you ever renovated an old property?’ The answer is no.
Being told I was terminally ill was shattering. I have never felt more alone or more terrified.
We have tried to sugarcoat the diagnosis for our children but I know they’re frightened. When I asked the doctor whether I would be here this time next year, he shrugged and said: ‘We hope so but it depends on how you react to treatment.’
After two cycles of chemotherapy my lungs seem clearer, but the side-effects are horrendous.
We all need to be more aware of the dangers of asbestos. Although it is banned, it’s rife in our schools, hospitals and public buildings.
Visited factories that may have contained it
Phil Seddon, 55, a technical manager at a food factory, lives near Wigan with his wife, Paula, 54, a sales administrator and their daughter, 17. He says:
I went from feeling fighting fit to discovering I had a terminal illness in just one month.
Now – a year on – it still seems unreal. I may not look unwell but my insides are rotting.
In October 2023 I developed a bad cough and got breathless walking up stairs. As a chap who regularly did the Yorkshire Three Peaks Challenge – a 25-mile walk over three mountains – I knew something was wrong.
Phil Seddon, 55, went from feeling fighting fit to discovering he had a terminal illness in just one month
My GP immediately arranged for me to go to hospital, where doctors drained over eight litres of fluid. After a bronchoscopy – where a camera was passed into my lungs – I was told I had mesothelioma and it was terminal.
I’d never even heard of it. Doctors kept asking if I’d worked with asbestos. I haven’t, although my job was servicing machines in factories. Now solicitors at Leigh Day are helping me trace all the buildings I visited for work over the past 30 years where asbestos would have been in the structure.
I’m receiving immunotherapy and while well enough to work, I wheeze and even walking 150 yards is difficult.
I stopped asking for a prognosis after it plummeted from 2½ years to 16 months within a few weeks. I’d rather not know.
Signs in pregnancy baffled doctors
Emily Jane Carter, 41, works in logistics and lives in Tamworth with her husband, Ryan, 38, a production manager, and their three children aged ten and under. She says:
I was five weeks’ pregnant with my son, Thomas, when I noticed a sharp, paralysing pain in my left shoulder in May 2022 – I now know it was caused by a build-up of fluid around my lung where the cancer is.
Emily Jane Carter, 41, says she lives from scan to scan and never plans beyond three months but tries to make life as normal as possible for her three children
I was in such agony, I was admitted to hospital four times during my pregnancy but doctors couldn’t find the cause though they suspected some form of cancer.
Finally in October 2023 – 17 months after the pain started – Ryan persuaded me to go to the GP as it was no better.
My doctor sent me to hospital, where a series of X-rays and CT scans showed I had pleural mesothelioma.
I was alone when the consultant told me it was terminal. I went to pieces. But with three young children, I have to get up every morning and stay positive. I’ve been receiving immunotherapy for 12 months. So far the cancer is stable.
I live from scan to scan and never plan beyond three months but I try to make life as normal as possible for our children. They know I have a poorly lung and need treatment, but they are too young to understand that I’m dying.
Most days I feel well. So much so that in May I hiked 26 miles with a group of six fellow patients. We raised over £10,000 for Mesothelioma UK.
My career meant I worked in offices next to warehouses. My solicitors are going right back to my school days to see where I came in contact with the asbestos which is killing me.
Worked in fireproof room in 1970s
Ian Terry, 75, a retired computer programmer, lives in Worcester. Widowed, he has two children and three grandchildren. He says:
The past 12 months have been very tough. My lovely wife, Vanessa, died of bowel cancer in March and I’ve been battling mesothelioma with no idea how long I have left.
My first job after university was as a computer operator between 1970-1972 and I was working in an air-conditioned, fireproof room containing asbestos-based ceiling tiles.
Ian Terry, 75, says back in the 1970s no one knew the dangers of asbestos like they do now, so he doesn’t feel bitter
The vigorous air conditioning – necessary to cool the computers – meant invisible asbestos particles from the tiles were constantly blown around.
Back in the 1970s no one knew the dangers like they do now, so I don’t feel bitter.
With the support of the excellent ASCE charity (Asbestos Support Central England) earlier this year I received £150,000 compensation from the company’s insurers – plus unlimited funds for treatment. Thanks to this, I’ve started chemotherapy privately.
I was diagnosed in September 2022 after feeling breathless. It was a body blow as in the very same month Vanessa was diagnosed with inoperable bowel cancer. She lasted just 18 months.
I had surgery to remove the pleura – the thin layer covering the lungs and lining the chest cavity. This kept the cancer at bay until this summer. I haven’t asked for a prognosis. I live one day at a time and make the most of the time I have left with my family.
